PRESIDENTIAL COMMISSION ON THE
HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

HEARING ON CARE OF HIV-INFECTED PERSONS

The Hearing was held at the
INTERSTATE COMMERCE COMMISSION BUILDING
HEARING ROOM B
12TH AND CONSTITUTION AVENUE, NW
WASHINTON, D.C.

Friday,. January 15, 1988

COMMISSION MEMBERS PRESENT:
ADMIRAL JAMES D. WATKINS (Ret.), CHAIRMAN
COLLEEN CONWAY-WELCH, PH.D.
RICHARD M. Devos
KRISTINE M. GEBBIE, R.N., M.N.
FRANK LILLY, PH.D.
JOHN CARDINAL O’ CONNOR
BENY J. PRIMM, M.D.
PENNY PULLEN, M.D.
CORY SERVAAS, M.D.
WILLIAM B. WALSH, M.D.
POLLY L. GAULT, EXECUTIVE DIRECTOR
COMMISSION MEMBERS NOT ATTENDING:
JOHN J. CREEDON
THERESA L. CRENSHAW, M.D.

BURTON JAMES LEE, III, M.D.

 

 
 

 

INDEX

WELCOME

Admiral Watkins, Chairman

OVERVIEW/EVOLVING PERSPECTIVE IN THE AREA

of EDUCATION OF HEALTH CARE PERSONNEL AND PROFESSIONALS

Dr. Peter Fischinger, AIDS Coordinator
U.S. Public Health Service

PANEL EIGHT

HEALTH CARE PROVIDER EDUCATION AND THE HIV EPIDEMIC

Dr. Sam Matheny, Director
Office of Special Projects, Health Resources
and Services Adminstration

Dr. Patricia Hurley, Director

New York University AIDS and Mental Health Project
and Co-Director, AIDS Regional Education and
Training Center

Dr. Eric Fine
AIDS Administration of the Maryland Department
of Health

Dr. Marilyn Chow
California Nurses Association

PANEL NINE

RECOMMENDATIONS

COsT

Dr. Vivien DeBack, Executive Director
National Commission on Nursing Implementation
Project

Ms. Jeannee Parker Martin, Director
AIDS Home Care and Hospice Programs of the’
Visiting Nurses Association of San Francisco

Ms. Helen Miramontes
American Nurses Association

Dr. Jean Fox
University of Virginia School of Nursing

Dr. Mary Naylor, Associate Dean and Director
of Undergraduate Studies, University ‘of
Pennsylvania School of Nursing

PANEL TEN
BENEFIT ANALYSIS
Mr. John Thompson
Yale University School of Medicine

 

PAGE

301

302

315

319

320

325

' 346

348

351
354

357

376

 

 
 

 

INDE X (continued)
PAGE

PANEL TEN (continued)
COST BENEFIT ANALYSIS
Ms. Dianne Luby, Operations Manager 380
Medical Case Management for Equicor, Equitable
Hospital Corporation of America

PANEL ELEVEN
EVALUATIONS OF CLAIMANTS WITH AIDS/SOCIAL SECURITY
DISABILITY INSURANCE PROGRAM AND SSI
Mr. David Rust, Associate Commissioner 388
for Disability, Social Security Administration

Dr. William Winkenwerder, Special Assistant 393
to the Administrator, AIDS Coordinator at the
Health Care Financing Administration

Mr. Douglas Peters, Senior Vice President 396
Blue Cross of Chicago

Mr. William Ferguson, Director 418
Division of Payment Policy, Office of Supplemental
Security Income

ADJOURNMENT 427

APPENDIX
SUBMITTED TESTIMONIES

 

 

 
 

 

PROCEEDINGS

MS. GAULT: My name is Polly Gault. I serve as the
designated federal official, and in that capacity, it is my
privilege to declare this meeting open. Mr. Chairman?

CHAIRMAN WATKINS: Good morning. Welcome to the third
day in a series of hearings on care by the Presidential
Commission on the HIV epidemic.

Before we start our hearings this morning and I pass
the chair to Dr. Conway-Welch, I would like to take this
opportunity to ask three of the staff members who were detailed
to the Commission, Captain Jerry McClellan from the US Navy,
Office of the Surgeon General, Christine Grady, clinical nurse
specialist from the National Institutes of Health and Rosemary
Diliberto, public health analyst from the Health Resources and
Services Administration to please stand. They are over here. I
would like to recognize them because it is typical of the
response that this Commission is receiving that they have been
willing to not only come to us and serve, but more importantly,
they have been willing to work day and night through the holidays
to help prepare for these special hearings on care. They are
uniquely qualified. They have provided a tremendous service to
the nation, and I would like to just give them this special
recognition in a public session here, and perhaps we could give
them a little round of applause.

(Applause. )

CHAIRMAN WATKINS: Thank you very much. I will turn
the chair over to Dr. Conway-Welch.

DR. CONWAY-WELCH: Thank you, Mr. Chairman.

We are pleased to begin day 3 of our hearings on care
issues surrounding the HIV epidemic. I would, also, like to
note that the staff worked very hard to put this hearing
tadether, particularly since it involved a lot of work over
their holidays, and I, also, would like to recognize the fact
that many of our witnesses were contacted, and they were
gracious enough to be willing to help us out with their
information, but that, also, involved work over the holidays,
and we are sensitive to that, and we appreciate it very much.

I would like to discuss very briefly the way we will
proceed. When we have a panel of several people in front of us,
we will ask everyone to confine their remarks to approximately 5
minutes. We have asked them to bring their remarks in the form
of recommendations or summaries, and then we will commence
question and answers with the Panel.

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For the first presenter this morning, we are going to
deviate from that a bit because we have asked him to provide
some background material, and we will then have time for
questions and answers after his presentation. It gives me great
pleasure to introduce this morning to you, Dr. Peter Fischinger,
the US Public Health Service AIDS coordinator. Dr. Fischinger?

DR. FISCHINGER: Thank you, Dr. Welch, Admiral Watkins,
members of the Commission. Thank you for the opportunity to
appear before you. I think what I will try to do in a very few
minutes is give you an overview of the evolving perspective in
the area of education of health care personnel and professionals.
As you know, the Public Health Service is organized in various
agencies, bureaus, institutes and divisions. There is an
enormous amount of activity going on. We are organized in the
area of AIDS in a task force that meets on a regular basis. We,
also, have a federal coordinating commission that involves other
federal departments and agencies that interact with us on a
regular monthly basis.

I think it is very interesting that when you called
this meeting to focus on this issue you singled out one of our
agencies, the Health Resources and Services. It is interesting
that as far as what has happened in the last few years where much
of this activity had been going on that the major focus was
actually elsewhere. For example, in 1987, HRSA represented only
19 percent in this specific area. However, in 1988, it will
represent about 45 percent of the activities. Therefore, I feel
it would be my mission here to present to you the remainder of
the activities as they evolved in this particular area.

I think it is, also, interesting to consider that
recommendations in the Public Health Service are unique ina
sense that they can be transposed rather immediately into the
various agencies and funding can occur through normal and
appropriate mechanisms in the areas that we think ought to
develop. Let me immediately start and particularly focus in ona
few specific aspects. I had a series of slides put together for
this. The slides are in your handout, but if I may have the
first slide on the health care workers and professionals. I want
to specifically zero in on the fact that there are subsets of
these that are normally not accentuated, such as the
administrators, the laboratory workers, trainees and students.
‘ney also come in contact with AIDS patients and virus, and they
also have to be informed, as well as the standard groups of
health care professionals that we normally consider. May I have
the next slide?

We would then like to consider the mechanism of
information transfer to the health care professional. These
range from a global type of notice, as the national advisory

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notices, to regular transmissions of reports from CDC on a
national basis, and drug advisory bulletins from the FDA. There
are ways of accessing the most recent quality treatment protocols
through the physician data query. There are AIDS symposia and
conferences.

In the next slide we, also, outline specific workshops,
and targets for health care professionals. We can look in terms
of training groups networking and a large number of products that
have come out. These are general in nature. They can be specific
in terms of packets for AZT, videotapes, directories and
brochures.

In the next slide, I would like to show you the nature
of information that we think ought to go to the health care
professional. In terms of the major subsets, we see that the
areas of interest are very much in transmission, prevention and
the implications of seropositivity. Everybody wants to know
exactly what does it mean and what doesn’t it mean. The
manifestations of AIDS which are very protean in nature at times
are, also, of great interest. The status of treatment and the
neuropsychiatric component have, also, been highly significant
certainly in the last few months.

In the next slide, I would like to show you that there
are questions of attitudinal barriers that have to be solved; the
possibility of alternative care modes, and the questions of
support and community services.

All of those are in the category of the various
agencies of the Public Health Service. One of the other
questions that always comes up is the question of financing, and
that is in the area of Health Care Financing, and you will hear a
more specific rendition later on today.

In the next slide, I would like to consider one of
these global types of advisory notices from the Departments of
Labor, and Health and Human Services a few months ago which
considered the workplace. Half a million of these notice have
been sent to health care employers in November 1987. This is a
bulletin that comes out in the Federal Register, as you can see,
and the idea is that for the first time the employers can now be
held accountable.

Primarily these are health care employers and therefore
this is one of the ways of disseminating the important
information to the health care professional through a larger
work-oriented group.

In the next slide, I would like to show you that
individual agencies have achieved significant degrees of
accomplishment and an important agency is the NIH. For example,

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the NIH sponsored symposia focused on health care professionals,
that took place in December 1986, in San Juan.

There has been a series of seven workshops for nurses
and social workers. Four thousand, two hundred of these
individuals, were actually trained in the process during 1987.

I have a little brochure listing the speakers, for the San
Diego meeting. There are, also, pediatric AIDS conferences that
are focused on the health care professional, as well as
obstetrics and gynecological workshops, and two of those, took
place in 1987, as an NIH activity. Next slide, please.

The additional things that have come from NIH are drug
information; 35,000 packets went out on AZT to pharmacists, and
physicians. There are directories of intermediary organizations
that are useful, that have been collected. There is interaction
with other outside groups. The on-line AIDS information file
exists for optimal treatments today, and there is a series of
other telecommunications strategies and various specialty reports
that come out as well.

In the next slide, I would very briefly like to go over
what the ADAMHA, the Alcohol, Drug Abuse and Mental Health
Administration has been doing. They have an extensive program.
I apologize for the small size of the slide. Again, this is now
targeted to the very specific subset. This is deriving from the
Institute of Mental Health, and there are specific mental health
foci that are involved here. One of the important things is a
series of contracts that have been let to a number of sites, and
the special feature of this is making sure that they are not
redundant in terms of content with HRSA and other organizations
within the Public Health Service.

In the next slide, I would like to show what mental
health’ would like to be doing in the next year or so. There will
be a series of new contracts that are going to be awarded
nationwide, and they will have a very similar focus.

One of the very critical aspects of ADAMHA is, of
course, in the area of drug abuse. The next slide, outlines what
they have accomplished. I think all of these are detailed in the
specific testimony. We can see that the numbers of trainees that
have been informed range in the thousands, and I would like to
stress several categories in that subset, One is that we have to
get to the drug abuse counselors. We have to talk to the people
who run these clinics and there is, a program for training of
trainers. Only in that fashion can you actually go out to the
community where essentially the great bulk of drug abuse occurs.

In the next slide, I would like to show the
accomplishments of ADAMHA. They have had a series of training,
education modules that go in depth into those specific questions

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that are of interest to the drug abuse treatment community.

There is an outreach program that will go out to street workers,
people who actually can communicate with the drug-abusing
population. Methadone treatment facilities can be upgraded in
the process; a series of videotapes, also, exists. So, ADAMHA
has come up with a great deal of positive input. There is, also,
activity in the area of CDC. Their major focus is the STD
clinic. They have been informing these people in the area of
AIDS for quite some time, and for example, in the last year, they
trained over 2300 individuals specifically in areas of AIDS.
They, also, have lab courses, both here and abroad, and they have
trained several hundred individuals. As you know, the major CDC
products are in the form of informational packages, the MMWR. So,
there is an enormous degree of activity, and one of the things
that perhaps most of us have made use of, CDC has put out 200,000
slides in the last 2 years responding to 5000 different requests.
They deal with the epidemiology, as well as other specific
aspects of AIDS.

In the next slide, I would just like to focus in ona
coordinated effort. For example, this one deals with the target
of the federal laboratory worker in this particular case and,
also, the outreach program, since there are a lot of contracts.
that are going on where people are actually working with
replicating virus.

As you know, several infections have occurred. There
is a great deal of anxiety among laboratory workers, and we are
in the process, right now, of updating the Public Health Service
recommendations. There has been a series of groups that deal
with biosafety standards, and we are now defining personnel
surveillance programs in terms of what is the best way to go when
somebody who is potentially positive comes up; how is the
information transmitted to this individual, how to preserve the
confidentiality, and what is the best approach to this.

So, the status is that we have a final draft that is
ready to come up. The last thing that I would like to mention --
Next slide? -- is the general overview of HRSA. You will hear
more from Dr. Matheny, and there are only two foci that I would
like to mention very generally. This is where our main action is
going to take place over the next few years. These are the
education and training centers, and dealing with the community
physician who has to be educated. In the last slide is the
general overview of the AIDS curricula preparation and execution
that will be taking place in the various professional schools,
and again, Dr. Matheny can give you a better sense of focus
there.

Also, included in your package is the first rendition
of the Public Health Service spending in the area of AIDS for
1988. This the reconciliation budget. We have had a 92 percent

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increase over the last year. The budget for the entire Public
Health Service will be on the order of $951 million. Each agency
is specifically represented as to how much they are spending, and
the only very highly specific focus in the area that I have been
talking about is that in 1987, the education for health care
professionals has cost approximately $8 million. In 1988, this
will be going up to $24.5 million. The major focus will be a
rise from $1.5 million in HRSA to 11.5. The second largest
agency contribution is in the ADAMHA. They will go from $4.2
million to about $9 million. The rest is represented in terms of
other agencies.

Mr. Chairman, this essentially concludes my
presentation, and I am amenable to, I am sure, many questions
that would come up. Thank you.

DR. CONWAY-WELCH: Thank you very much, Dr. Fischinger.
I would like to start with questions on my right, Dr. Lilly?

DR. LILLY: I am going to pass for the moment.
DR. CONWAY-WELCH: Mrs. Gebbie?

MS. GEBBIE: Doctor? We will get together, Admiral and
have an alumni association.

(Laughter. )

MS. GEBBIE: At the local level where grants are
awarded to a regional institution, there is some doubt that those
institutions will reach beyond the borders of their own state to
neighboring states because there are universities that have a
land grant relationship to the state in which they are located,
perhaps and not a strong history of working across a multistate
region.

What kind of efforts are you making to ensure that a
regional center truly reaches the region that you have matched
up with on your maps or in your outreach system?

DR. FISCHINGER: I think specifically in terms of
discussing the education and training centers, I think Dr.
Matheny will be able to go into a lot of detail. Obviously an
outreach has to be effected, specifically in the areas where
there may be relatively low incidence, so that a number of
states can be brought into the network.

In the Public Health Service we have had experience as
achieving that because there are other kinds of centers
available. As you know, in terms of my past history, I have
come from the cancer field, also, a lethal disease. There are
approximately 60 cancer centers across the country; precisely

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the same questions have to be answered. How do you affect
outreach? There may be ways of developing community programs in
various hospitals, clinical programs that can be part of an
outreach program. I think these have to be yet defined
specifically as to how do you go, and it probably has to be site
specific. Different areas will have different needs, and I think
this is one of the HRSA occupations that we will follow very
closely.

DR. CONWAY-WELCH: Dr. Walsh?

DR. WALSH: Doctor, has this program been going on for
too brief a period or have you been able to evaluate how far you
are getting in your educational project. There still seems to be
abysmal ignorance in my own profession and among many other
colleagues or allied health specialties, and I wondered what the
experience has been because particularly if you are going from 8
million to 24 million, I am sure that you want to benefit by any
omissions or errors. What have you found?

DR. FISCHINGER: I think your first statement was very
right that it is very new, and nothing existed in the area of
education and training centers in 1986. There was just the very
beginning in 1987, but it is really rising significantly in 1988.
I think it is very difficult to evaluate this well, and I think
you are absolutely right in that respect. We want to make sure
that there is a continuous flow of outreach that gets to the
place where it is needed.

DR. CONWAY-WELCH: Dr. SerVaas? Mr. Creedon?

MR. CREEDON: Doctor, I don’t Know whether one of the
things you are looking at is the different model for caring for
people inpatient, outpatient, chronic and that type of thing.
Is that part of what the educational process is about?

DR. FISCHINGER: I think different models have to be
considered as to what is the best way to go. I think as I tried
to point out, you do have a series of targeted populations. It
is quite clear to me that when you want to reach counselors in
drug treatment clinics, it is going to be a very different
educational approach in terms of their foci. When you are talking
to people like psychologists and psychiatrists, you have to have
different stresses put on that.

The clinicians that we interact with are obviously
very much interested as to what is happening, what can I do for
the patient today; what kind of complications are coming up; what
are the best treatments; and one of the interesting things that
has to be considered, what are the bogus type of treatments that
are occurring? People who are desperately ill seek desperate
measures, and what I am saying is that different groups will have

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very different distinct foci as to how to approach their
education relative to their perspective of AIDS.

MR. CREEDON: Some of the testimony we have had
indicates that at various times once someone has AIDS they will
require hospitalization, and then they will not require
hospitalization but rather outpatient treatment. Then there may
be a period when they come back again, and there are a number of
models with respect to which we have had testimony. One is the
San Francisco model, and we had someone from the Robert Wood
Johnson Foundation talking about the situation there, and we had
a doctor yesterday telling us about Johns Hopkins. They all
seemed to have somewhat different approaches. They all seemed
very convinced that their own approach is the most effective one.
I wonder whether you are doing any evaluation of the different
approaches. I guess in part I am looking for something that we
as a Commission should be recommending as far as you see it that
could be helpful in this process?

DR. FISCHINGER: I think you are right. There is not
what is a recognized uniform approach to what may be the best in
terms of treatment of the patient from the very beginning of the
infection down to terminal stages of the disease. We posed that
question in the Public Health Service, and I believe Dr.
Sundwall gave you some specific testimony, including the report
from HRSA that was asked for by the Assistant Secretary for
Health, Dr. Windom, that has 17 recommendations in it. Some of
those recommendations for people who interacted are posing
precisely the same questions. How do you get the best care? Is
in-hospital care optimal, at what points in time? I think it is
reasonably recognized that out-of-hospital care is, also, a very
important component here, and we have assigned various agencies
of the Public Health Service to look at that question as an
outreach event based on recommendations that we have had.

MR. CREEDON: As one of your slides indicated, an
aspect that needs to be considered here is financing at various
stages. Dr. Bartlett, in particular, from Johns Hopkins
yesterday said that he thought that a capitation approach from
beginning to end could be more effective and more cost effective
than having different payment approaches for when someone is in
the hospital or they are out of the hospital, when they are ina
chronic care facility or someplace else. Is any work being done
about that possibility from the standpoint of either Medicaid or
any other government program?

DR. FISCHINGER: I think you were appropriate enough to
have invited Dr. Winkenwerder who will be a witness later on. He
wili represent, as the AIDS coordinator, the Health Care
Financing Association. This is a sister group within Health and
Human Services. I think he will be the most appropriate person
to recognize how the federal health care financing system

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actually may impact on these treatment modes. We are

interacting with them on a regular basis. We have a group of the
Assistant Secretaries for Health that includes Dr. Roper who is
the head of the HCFA and include all the other Assistant
Secretaries, and we are discussing these issues.

MR. CREEDON: Thank you.

DR. CONWAY-WELCH: Thank you, Mr. Creedon. I have two
questions, Dr. Fischinger. I think I am correct by your numbers
that you have been involved in training with about 7000 people
over 17 states since you have begun your efforts in this area.
While I know that it is very new, do you have an idea of what you
hope your projected numbers would be? That seems like a small
amount, given what we are hearing as the need.

DR. FISCHINGER: You are referring specifically to the
HRSA effort as to how many we would like to train eventually. I
am not quite certain how many would be optimal, but it is quite
clear that a several-fold increase of those that have currently
been trained is going to be necessary, and the possibility of
developing second-stage training, the training of trainers is
always a very effective way of doing it. ADAMHA has had a little
lead on that, has been effective, and it has basically
multiplied. So, if you speak in terms of training, let us say,
just in the area of drug abuse, tens of thousands of people have
been actually approached and reached in that capacity. So, I
think you, again, have to look at various subsets as to where
training can occur.

DR. CONWAY-WELCH: Thank you. I understand that the
advance notice for information occurred in November for the
Department of Labor, and Department of Health and Human Services
protection against occupational exposure that was in one of your
slides. I had a question about three aspects of that, and
perhaps you may not be able to respond at this point, but perhaps
you could share some information or background with the
Commission regarding those regulations. My concern is that the
hospitals, particularly and other agencies are going to need to
classify the tasks that are performed in terms of the possibility
of exposure to the virus. The concerns that I have with that are
threefold. One is how does that relate to the CDC guidelines
which at this point is what we have to give guidance to health
care professionals.

Second, the role of professional judgment, will that
have a role, and what will that role be in terms of the
implementation of these guidelines, particularly OSHA inspectors
in the agency. Third, the cost, the estimated cost in an 800-bed
hospital for the implementation of the regulations, if they are
implemented as they are currently spelled out. I am concerned
about the role of professional judgment with OSHA inspectors.

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DR. FISCHINGER: Let me say that the whole thing has
appeared in the Federal Register, and as I mentioned, there are
different categories of potential exposure. The initial input,
naturally has been primarily through the CDC and their
guidelines. There is, also, the latest one of these in the
series, the August 27 recommendation on prevention of HIV
transmission in the health care setting. I think there is a
direct input to the formulation of this dual Department Federal
Register advisory notice. I think the categorization is
reasonable.

I think one of the areas that probably has not been
addressed that worried me a little bit was the fact that some
hospitals that also do research will have laboratories where
virus replication takes place. Let us say that if they do grow
virus in tissue culture, and I think Dr. Lilly certainly is an
expert in the area, whereas you have fairly low levels of virus
in body fluids, maybe almost from zero to a few hundred
infectious units, immediately in culture, as you are trying to
isolate a virus, you can go up to levels where you have tens of
thousands of infectious virus particles. Based on essentially
the only animal model that we have, this virus is quite
infectious, for the chimpanzee. It takes very little to infect
an animal, and we are now considering the possibility that there
may yet be another category considered for people who actually
work in the area that have to do with replicating virus as well.

So, that is, in terms of the specific regulations as to
the three categories. The question of professional judgment,
comes in both in house and, in terms of the people who will do
inspections and make certain that the right guidelines are being
followed. For the first time there are going to be some teeth in
this in terms of -not being strictly advisory, it has to be
implemented. It is going to be very important that those people
who monitor this are, also, well educated in the process. We
will interact with the federal communicating group where we do
interact with the Department of Labor on a regular basis to make
sure that those individuals will have an appropriate degree of
training there, as well. I think we share some of your concerns.

The element of cost as to how much this is going to be,
I cannot directly address. I can come back and try to educe as
to what the projections might be based on our Department of Labor
through OSHA primarily.

DR. CONWAY-WELCH: Thank you very much. Dr. Lilly?

DR. LILLY: I wanted Peter to come back to this
question of the infection of research workers in laboratories. I
suppose my main question is to what extent has the publicity
surrounding the number of accidents that have occurred in which

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laboratory workers have become infected, impeded the
accomplishment of AIDS research?

DR. FISCHINGER: I think a great deal of concern has
been raised by the fact that two laboratory workers have become
infected. Both of these occurred in contractor facilities where
large amounts of virus are being concentrated, and this means
literally hundreds of liters of virus per week. This is
necessary for the development of the ELISA test plates, but it
does involve virus concentration. It is quite clear that at
least one of the individuals has been infected by the virus this
individual was actually working with.

This is not ambiguous because otherwise you may always
have the possibility that there were other ways by which this
person was infected other than that particular virus. A great
deal of concern was raised regarding "Can you consider a specific
evpesure that accounted for the seroconversion?" In one of the
cases that was a very clear-cut event where a person was handling
concentrated virus and actually suffered a wound in the process
of cleaning out a centrifuge rotor.

In the other case, it was not clear whether the person
experienced a triad of events, where virus leaked from a
centrifuge, where a person did not wear gloves, and the person
had, also, trauma or a cut or dermatitis on the hands.

We can certainly say that in the year and one-half the
time interval in which this did occur numerous occasions have
taken place where one of those three events was obvious. We
could not simply put all three of them together to account for
it.

I think what is gratifying has to do with the
reference, "Are our guidelines appropriate for laboratory workers
right now?, is that both of those events occurred about 18 months
ago. There are literally hundreds of workers out there who have
been using standard P3 containment procedures, and none of these
have seroconverted. Again, from speaking to individuals in
laboratories that do handle large amounts of virus, I think there
is a sense of proper caution. I don’t think it is impeding the
work, at least in the groups that have been working on this virus
already.

mo DR. LILLY: I, also, wonder, are these laboratory
workers insured in any sense against this kind of thing?

DR. FISCHINGER: I think that these laboratory workers
have a general insurance policy. I cannot address the specifics
in terms of HIV. As far as I know, most of the groups that are
dealing with virus are actually now monitored voluntarily on a
regular basis to make sure if something does occur that they are

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properly notified with all the aspects of confidentiality and
privacy maintained. I don’t think that anybody had considered up
feout the possibility of having specific insurance in terms of
HIV, but I can get back to you on that as well.

DR. CONWAY-WELCH: Thank you very much, Dr. Fischinger.
We appreciate your comments. We would like to move on now to the
second panel.

CHAIRMAN WATKINS: Dr. Fischinger, let me ask you
another question. I certainly commend you for spending the
resources that you have been provided in a balanced way. So, I
don’t want to raise that issue, but when we listen to hundreds
and hundreds of witnesses coming before us that are pleading for
a war on AIDS or pleading for more trained specialists, more
trained social workers, and more drug rehabilitation and
treatment clinics. They talk about the terrible paucity of
nurses and the declining recruiting potential; the fact that
National Health Services Corps is declining significantly in
numbers for lack of incentive and the lack of networks in the
field that provide optimum cost effective care using the models
that are available and so forth. So, I guess being an old
bureaucrat, I listened to the words, and there is no question
that you are a competent professional. Your people are dedicated
to doing the best they can, but after all, the Congress doubled
the budget, and the question is do we really have a war on AIDS
going in your opinion or are you just managing the resources most
efficiently that you have been given? In other words, what is
the plea from the Public Health people? We have been listening
to Dr. Koop, and he is saying some things. Are you satisfied
that you have got your hands around the additional funds doubled
by the Congress. Can you effectively move in a variety of areas,
and are you getting the message out to the little people, the
community-based organizations that we have listened to who are
saying that they don’t see the impact yet? They don’t see a lot
of the things they need. They are crying for all kinds of help
in a variety of areas.

So, I guess that my question is a broad question. Do
you think you have a war on AIDS that the Public Health officials
feel is appropriate for the nation. Are you listening to the
pleas of all of the people around the country that are faced with
overwhelming tasks and who constantly hear that the projections
are getting worse?

DR. FISCHINGER: I think your question is global in
nature. I think that any targeted approach on such a serious
disease as AIDS will probably go through a number of phases. We
have certainly seen some very rapid progress in the
identification of the agent and we are trying to develop some
drugs that may be at least partially helpful.

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Po

The idea, as I would see it, is that this first phase
has been reasonably successful. I have been in the present
position now almost 2 months, and what I have seen is the fact
that much of the activities that we have seen has been
specifically targeted to the existing programs. I think what we
need is a proactive visionary approach that is going to look at
the entire panoply and panorama of health needs.

I think some of these we have done well. I think with
the new input in terms of specific resources it is now such that
I think we are ready to be able to carry this in a concerted
effort to the actual health care provider, to people who are
actually in the trenches who need all the help and the support
that they can get, and I think the increase that we are seeing
now in our agencies like HRSA, I think this is the beginning of
such an effort. You are absolutely right. I think more ought to
be done in that particular sector.

CHAIRMAN WATKINS: I am just extremely concerned that
there is a tendency to see dollars flowing in a budget line,
while the human resource underneath, used to manage those dollars
effectively, are lagging considerably. We have heard a lot of
pleas from people who want increases in the number of full-time
equivalents. We see a total mismatch between the NIH budget and
the Food and Drug Administration budget which seems to be an
orphan budget without any advocacy. How are they coupled
together? Are we building a backlog there that is really
detrimental to other health problems in the nation? Do we have
that kind of aggressiveness going on? Do we have the trained
professionals, for example, that are necessary to execute that
pudyet effectively or do we have to wait 2 to 3 years for that to
build up? We have seen dollars added in many other areas, and
yet people are coming to us and telling us that they don’t see
the results of those dollars at the person with AIDS level yet
for a variety of reasons in the states. It may not be your
responsibility, but I am asking you the question because we are
overwhelmed with some of the testimony that is coming before us.
I am not sure if what you are doing is an answer to these
concerns, particularly, as viewed from the grassroots level.

 

DR. FISCHINGER: I consider the fact that at certain
points in time in dealing with this epidemic you will have
different approaches that are going to be necessary. Of course,
if you could consider that you can have a treatment or preventive
approach, you could very easily obviate the specific events, and
this is probably one of the reasons why so much of the resources
have been put into the National Institutes of Health. I think
many people will believe that the ultimate solution to this
problem is going to have an effective preventive vaccine or an
effective treatment. So, that is one of the reasons why so nuch,
I think has been focused, but again, I think you are right. We
are in a second phase of this, and we have to be able to, in lieu

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of not having a specific treatment or vaccine right now, we have
to be able to have an effective outreach to the consumer groups,
to people who are working with the patients, and I believe that
some of the increases in activities which we frankly haven’t had
before that are now in the last year’s and the current budgets
and are further projected as part of our planning for 1989. We
will take your consideration with a great deal of import, and we
will continue our planning with that in mind.

DR. WALSH: Doctor, with the vast increase in funding
that we have, is the interagency coordinating board functioning
effectively or will it function more effectively or is this the
right mechanism or should there be some other mechanisn. Along
with what the Admiral has pointed out, we, also, hear so many
different efforts by so many different agencies that don’t seem
to be coordinated. Do you have any comment on that, because you
know $950 million is an awful lot of money?

DR. FISCHINGER: I think this is obviously sort of a
very significant question that we have to pose. Are we making
sure, one, that we are covering all bases; are we dealing with
any questions of redundancy, and this is where the interagency
interactions take place. We do have a very significant
discussion of any of the issues that come up. All agencies are
represented in our task force. Sometimes the need is actually to
be interacting with other federal departments in the area which
actually even goes beyond this. Obviously other departments are
involved. The critical kinds of issues that are being considered
like with the Department of Defense and the question of the early
neuropsychiatric damage, we have to interact. They have the
individuals who have critical jobs, and the question of early
such damage has to be really assessed by the experts that we have
in the Institute of Mental Health and some of our agencies.

There has to be a translation of expertise. What do we really
know on a longitudinal basis in such a case through other
agencies? Yes, we are in constant and continuous discussions
with then.

DR. WALSH: Because we would deeply appreciate, any
suggestions along the line of how this Commission could make
recommendations to make the coordination perhaps more efficient
because you have a great burden of responsibility with all that
funding coming out of HHS. I just get the feeling as we hear
speakers from your own agency and other agencies that there is a
little vagueness to me, and I think that something has to be
strengthened, and we would like to know how to do that.

DR. FISCHINGER: Thank you. We will get back to you.

DR. CONWAY-WELCH: Thank you very much, Dr. Fischinger.
May we have the next series of panelists, please? I know that
Dr. Matheny is under a time crunch. We have asked the following

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panelists to discuss issues surrounding health care provider
education and the issue of the HIV epidemic. I would like to
begin with Dr. Sam Matheny. He is Director of the Office of
Special Projects, Health Resources and Services Administration.
Dr. Matheny, good morning.

DR. MATHENY:: Thank you. I appreciate this
opportunity to go into a little more detail on some of the
aspects that you had presented this morning and by Dr. Sundwall
yesterday. I am the Director of the Office of Special Projects
in the Bureau of Maternal and Child Health and Resources
Development, and this is in the Health Resources and Services
AAministration.

I, also, function as the AIDS coordinator for HRSA. Dr.
Sundwall has already talked to you about the other activities in
our office, and I am going to limit my remarks, really to the
education and training center, since I think that hasn’t really
been discussed in enough detail yet.

Just a brief word on what philosophically where we are
going and what we are intending to do with education and
training centers. The epidemic, as you all know, really started
in several major metropolitan areas, and for a number of reasons
the health professionals who were involved originally with the
AIDS epidemic were really limited to those metropolitan areas as
the primary care providers for those patients.

For other reasons, I think that we have found that
those health care providers, that the pool of health care
providers or the people who have frank AIDS really have not
increased considerably in the last few years, and this is of
great concern, I think, to us and will be of an even greater
concern if there is not something done to share the
responsibility for the care of those patients throughout the
general health professional public.

Philosophically then I think that what we are seeing is
that the education and training centers and the focus that we
have is going to really -- we are trying to make an influence on
primary health care providers throughout the United States for
several reasons.

One is that HIV infection is not an uncommon condition,
and if you look at the statistics which we think we know and
compare them with other chronic diseases, it is really not much
less than a number of chronic conditions which we term as fairly
common throughout this country.

It is, also, because of this and because the
distribution is fairly, although it is concentrated in several
metropolitan areas, it will change in that distribution and the

315

 

 
 

 

number of people who have HIV infection, more importantly the
number of people who have been exposed to high risk behaviors
which will make them concerned about the HIV infection will be
important throughout the United States.

We know that people are, also, returning to their homes
of origin for care when they reach the stages of terminal
illness. So, for a number of these reasons, there are no health
care providers anywhere in the country, we feel, who should not
and cannot be responsible for dealing with areas and aspects of
the infection.

Therefore, I think we have to back up in what we have
determined as the goals and objectives of education of health
care professionals. It will be important, not only to talk
about taking care of AIDS patients but it will, also, be
important to determine because there is a new incorporation of
knowledge skills and attitudes of health maintenance and
prevention which should be a part of the care of all people in
the linited States, and to do this, we are concerned because
there are a number of studies which are now indicating that some
of these, particularly these knowledge skills and attitudes are
lacking in health professionals who are now practicing. I would
refer you to the studies of Dr. Lewis at UCLA in which it was
demonstrated among primary care physicians that not a majority of
them were taking adequate sexual histories, knew how to do so or
were giving appropriate medical advice to patients as a result;
studies in the Journal of Medical Education which indicate
homophobia, a significant homophobia on the part of medical
studies; studies, also, by Dr. Lewis which indicate that
competency in working with AIDS patients was directly related to
the degree or lack thereof of homophobia in relation to the
patients.

So, there are significant barriers to both the care
delivery and the skills needed to do that in health care
professionals throughout the country. A lot of schools have
tried to and have already done and incorporated some of this
curricula into their educational programs, but a lot more needs
to be done.

We have a cooperative agreement with our own Bureau,
with the Bureau of Health Professions and have instigated a
number of initiatives in health professional training, among them
a conference in Baltimore which was the result of a series of
conferences among health care professionals, the leaders of
these health care professionals throughout the United States,
and I will be happy when the proceedings are published to share
their recommendations as well as mine with you. It is really
the result of, I think, some of the most important health care
professional leaders in the country on this issue, and some of
what I am saying will be redundant. I would refer you to those,

316

 

 
 

 

and I think it would be more complete as far as those
recommendations.

However, in meeting the critical needs, we have last
vcar started with funding of $1.9 million which was awarded to us
to begin education and training centers for centers. If I could
have the first slide?

These centers were located in four different areas of
the United States in the amounts that you see on the board in the
schools. We will have Dr. Hurley from New York University who is
the principal investigator of one of these centers, and she can
go into more detail perhaps at that time, but essentially these
centers were to have a regional focus. Next slide?

And currently the regions which are covered by these
centers which may change are the following, as you can see. So,
there are regional activities, and in some cases this was
already, and the question came up how to accomplish this, and in
University of Washington there has already been an established
system called WAMI, Washington, Alaska, Montana and Idaho and the
addition of Oregon to their area of interest allowed educational
activities to build on a former system of care or system of )
health working with health professions that the University of
Washington has worked with in the past. We intende because we
know we will have approximately $11 million to continue to
sunpnoert these and add probably six or seven additional centers so
that the entire United States will be blanketed by these
education and training centers in some form within the next
month, the awards will be made. The purpose of these education
and training centers -- Next slide? -- is really the following.
It is to target current primary care providers, health
professional schools, residency training programs and
particularly "train the trainer" activities which will hopefully
expand the activities of these and be able to reach a larger
number of people.

Interestingly enough, even within we have only had the
funding out since August, we have already effectively worked
with over 1000 health care providers in the last several months
and our intent would be to at least reach 1000 percent per year,
and probably we will be able to do more than that through the
"train the trainer" activities.

Education and prevention diagnosis counseling and
treatment, and I would emphasize that what we are trying to do
is determine what commonalities exist, not what is just specific
for AIDS. AIDS is a condition of chronic care of the disabled,
of the infirm, and we should be looking at education and training
for what is needed throughout. We have programs in geriatrics
programs and the disabled, and our intention is to show how the

care for AIDS can be integrated into the curricula in dealing

317

 

 
 

 

with the care of other disabled people. So, this will be, also,
an interest in working on the prevention and diagnosis, as well.
Next slide?

Showing, also, that the centers will have some
activities of hotlines, referrals and clearinghouse functions
that will work both with the CDC clearinghouse and, if needed, to
develop more regional responses. The multidisciplinary approach
we feel is important. The care is complex, both for dealing with
the frank AIDS patient and those who are concerned, and it needs
to be integrated with nursing, with home care, with social care
and other facilities. So, that is a very important strong
emphasis.

Ambulatory care, particularly we achieve the effect of
having drugs which can allow the patient to become more
ambulatory and live longer. That is going to be more important,
and finally and most, I think, important to integrate this care
into the entire total health care system. It should not, and we
do not intend on developing AIDS~-specific professionals but
intend to try to integrate what is needed to work with both the
at-risk person and the entire medical community to achieve that
focus and go throughout all the health. This, also, is that we
are concentrating predominantly in these physicians, dentists and
nurses but obviously other health care workers, health
professionals will be affected, as well, but the National
Institute of Mental Health will be working more strongly with the
mental health workers, and our focus is going to be primarily on
these other primary workers.

So, our recommendations really we feel would be to
continue the support for these regional centers of training and
education, to encourage the health professionals to integrate
the care of HIV infected people into the mainstream of the whole
health care system and to recognize that HIV infected people do
need non-acute care and to make sure that the educational goals
and objectives correlate with the needs for the out-of-hospital
care which probably will become more and more important.

Finally, special emphasis needs not only health care
professionals counseling not only working with patients about
the positivity or negativity of their test results but
counseling in patient education, areas in which not only
recently have been really incorporated in a significant fashion
in health professional training.

I think probably several are ahead of others. This has
been more a part of nursing profession a lot longer than it has
the medical profession, and I think probably we in the medical
profession are several years behind in the development of this
and other areas.

318

 

 

 
 

 

Within the medical profession this has not developed in
a uniform fashion, and several of the health professional
training programs are ahead of others. So, that needs to be
emphasized and built on and developed to a greater degree. This
concludes my testimony. I will be glad to respond to questions.

DR. CONWAY-WELCH: Thank you, Dr. Matheny. Dr.
Patricia Hurley is Director of New York University AIDS and
Mental Health Project.

DR. HURLEY: Thank you, Dr. Conway-Welch and members of
the Commission. I. would like to point out as Dr. Matheny has
already mentioned, I am, also, Co-Director of the AIDS Regional
Education and Training Center that is funded by HRSA, and I am
delighted to be here.

You have my testimony. So, I would like to move
directly to recommendations, and they are as follows: I
v-acemmend that No. 1 universities with academic health science
centers be mandated to continue to take the lead in HIV AIDS
continuing education for health care providers and education of
generic students.

No. 2, a mechanism be developed to assure the health
care professionals who care for AIDS patients have attended
programs that focus on diagnostic treatment and care issues that
contribute to compassionate patient care. This might be a
certificate program that documents completion of a specific
number of contact hours.

At this time HIV AIDS continuing education is a
voluntary activity for health care professionals. Accountability
to consumers demands that there be a mechanism for assuring that
practitioners complete continuing education activities that focus
on AIDS.

No. 3, educational programs must focus particularly on
the moving attitudinal barriers to care of persons with AIDS.
Homophobia, addictophobia or discriminatory practices of any
kind must be reduced and eradicated by educational activities
that are repeated often enough to break down the barriers that
prevent us from providing humanistic patient care.

No. 4, educational funding should include programs for
other levels of caregivers, including paraprofessionals who
provide a large percentage of direct care, particularly in the
home. In geographical areas of high incidence programs should
reach all human service providers, teachers and day care staff,
youth workers, emergency medical technicians, police and fire
personnel.

319

 

 
 

 

No. 5, health care professionals are in need of a
formal multidisciplinary peer support group, that is a support
group with other practitioners who are working intensively with
AIDS patients and one that is led by an experienced group leader.
Hospital and agency administrators must be convinced that there
is a need to support staff and that time allocated to this
activity is necessary to prevent burnout. Perhaps research that
measures the efficacy of support groups in decreased sick days
and turnover would be helpful.

No. 6, to demonstrate the value of integrating
education of health care professionals with practice and
research, funds should be used to support alternate models of
health care delivery that demonstrate continuity of care. An
example of this is a model of care that utilizes a day treatment
center, home and hospice care to provide quality patient care and
consideration of the person as an individual. Such models would
include the development of staff education, quality assurance
guidelines for patients and significant others and measures to
assess staff changes and attitudes and behaviors.

These models should be designed so that replication in
other settings is possible, and finally, I would like to add one
recommendation that you do not have, and that is that we will
eventually have a vaccine against HIV infection. We will
eventually have better treatments for opportunistic infections.
People will live longer and longer. Therefore the
psychological, psychosocial and neuropsychiatric sequelae of
AIDS such as dementia will be with us for a long, long time.

We need a cadre of well-trained, compassionate,
interdisciplinary teams of health care professionals to meet
these needs in the future. Thank you very much.

DR. CONWAY-WELCH: Thank you very much, Dr. Hurley.
I would like to introduce Dr. Eric Fine of the AIDS
Administration of the Maryland Department of Health. Dr. Fine,
good morning.

DR. FINE:: Thank you very much, Dr. Conway-Welch,
Admiral Watkins, members of the Commission. I am very pleased to
be able to speak today and to represent the State of Maryland. I
am a career public health professional, public health
administrator and a board-certified pediatrician. I would like
to speak more directly to the concerns that states have in trying
to address the training needs of health care providers at the
state level. I think some of the questions that were raised
earlier about the federal role are very important and very
Significant in our perspective of how we wish to approach this
problem.

320

 

 
 

 

First of all, it is very clear that there is a need, an
overwhelming need for health care providers to receive
additional education. The examples that I could cite in
Maryland have to do with a typical kind of anxiety of health
care workers every time they read the papers and find that
another nurse subjected to a needle stick has now become
seropositive. Health care providers are not able to put into
perspective in general the significance of those statistically
very small occurrences which still create a lot of anxiety in
the health care providing community.

In Maryland there are relatively few reports of
patients with AIDS to the state health department. We have
16,000 licensed physicians. We have another 75,000 licensed
health care providers of all types. Among the 10,000 physicians
who practice in Maryland, only 533 actively report patients with
AIDS to the state health department. This is not a deficit of
reporting. This is a reflection of the few physicians, in fact,
who actually care for persons with AIDS. I might add that only 5
percent of those physicians have seen more than 5 AIDS patients
and reported them to us on a regular basis.

What about patient access problems? We are
consistently hearing that patients are having difficulty finding
dental health care. They do not seem to have the same difficulty
with medical care, but this is a recurring theme that we hear
before our AIDS Commission in Maryland.

What about infection control procedures? Earlier there
was a mention about OSHA’s statement and the requirement to
protect health care workers. I think this is a tremendous and a
very important development in the United States. This will put

employers that health care workers need to be protected and to be
provided with the appropriate gloves, gowns, masks, etc.,
whatever we believe is appropriate to.protect a health care
worker.

Now, for the first time, OSHA and in Maryland, the

Maryland Occupational Safety and Health Administration will get
directly involved in compliance measures to see that biologic
hazards are reduced and controlled. In addition to that, with
the assistance of Maryland Blue Cross and Blue Shield, we were
able to mail to all 75,000 licensed health professionals a copy
of CDC’s guidelines for the management of infection control in
the health care setting.

This alone, this small act begins to make all of our
health care workers aware of their risks and their requirements
and their rights with respect to working in a safe health care
setting.

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Two things I would like to draw to your attention; I
have attached, for your information, to my testimony a copy of a
regularly produced report about patients with AIDS in the State
of Maryland, just so that you would have some perspective that
Maryland is really not an extraordinary state with respect to
occurrence of this disease. We are not a California. We are not
a New York or a New Jersey. We are more or less a typical state.

We represent approximately 1.5 to 1.6 percent of the
reported cases each month, and so, our problems, I think, are
very typical with respect to other states in the United States.

Physicians in Maryland have attempted to do some things
through their state and local medical. societies. One example
which you have is a publication by the State Medical Society of a
journal which was totally devoted to sexually transmitted
diseases and AIDS. In addition, this journal was reprinted by
Lue AMA and used for regional educatior purposes in Maryland
where physicians from five states came to a regional program; and
again, this was a limited didactic presentation, the kind of
thing you would pay registration and go for continuing medical
education credits. The real question is this type of
presentation really going to change any physician’s behavior? Is
it really going to encourage physicians and nurses and others to
begin caring for AIDS patients, and I would submit that the
answer to that is no.

Let us go on for a second and talk about some of the
barriers that I see as to why health care providers don’t seem
to want to pursue this education. First of all, there is not a
perceived need in the general provider community that they will
ever have to treat this type of problem. The numbers are
relatively small-in our state; and those who have tried to care
for one patient or another, and I speak of physicians now, have
found that as the patient becomes increasingly symptomatic, it
becomes very time consuming and therefore very expensive to be
able to orchestrate all of the consultants and all of the other
providers and all of the other services that are necessary. And
interestingly enough, most of the physicians who are caring for
larse numbers of these patients are infectious disease
specialists who by training are primarily consultants. They are
not accustomed to the ongoing day-to-day, comprehensive type of
care that an individual might have with a chronic condition.
They are not really able to follow up on the typical complaints
that patients have with their medication, with their
gastrointestinal symptoms and so on, so that a physician is
needing the assistance of other health care professionals, and a
team approach is what is needed.

What about the release time for training? This is
particularly a problem with nurse education. If we wish to
develop, as we will in Maryland, a cadre of case managers who

322

 

 

 
 

 

are largely community health nurses, we need to be able to
provide them time off for this education. You simply cannot
take a nurse in a local health department and say, "Come to an
educational program," without providing for that person’s
coverage back in the field or providing some sort of stipend so
that individual can have exposure to that information.

I might add, also, that this education is pointless
without hands-on experience. Anything that is gotten through
books and papers and slides really needs to be put into practice.
Individuals need over-the-shoulder supervision while they care
for patients. Our experience, and you may have heard from Dr.
Bartlett yesterday at Johns Hopkins, is that individuals who work
with AIDS patients day in and day out develop comfort with those
patients; and they transmit that feeling of comfort to the
patients which does not pertain when patients are placed in
general medical or surgical wards. And the patients report this
time and time again.

Now, what about curriculum? We are strongly supportive
of the Education Training Center program (HRSA). We think this
is innovative. We think it is a way to go, and we think it is
the way that the Federal Government can give us some direction in
giving a coordinated curricular approach to the education of all
catcyories of health care professionals. We should not be in
the business of developing curriculum in 50 states of the United
States. There needs to be one curriculum, one basic educational
approach. However, the way in which that approach is implemented
really can vary depending on the locality and the specific needs.

Not every state has a plethora of addicts who are
affected with AIDS or who have children who are infected with the
HIV virus. New Jersey is very different from Maryland with
respect to that problem. California likewise is very different,
in that there are large numbers of support personnel who have,
over time developed the kinds of community supports and services
that we in Maryland do not have.

What about outcomes? You know, we frequently can put
up training programs. We can pursue our medical education or
nursing education, but who is measuring the outcome? Who is
really looking at whether behavior on the part of the health
care provider has really changed? We can be very pleased that
we put on conferences, and we charge tuition, and people go
home, but does anything really change? Our education needs to
be based on an assessment of those educational objectives that
wa eet forth in the early instance of what it is we want health
care providers to do.

I would like to talk a minute about motivating factors.
What is it really that would motivate an educator or a health
care provider to pursue their education and incorporate it into

323

 

 
 

 

their practice? Licensure and certification have been mentioned.
I think the requirements of OSHA are another reason why
individuals would feel the pressure to get this education. What
about maintaining their job? Some will do it because they want
to serve patients better. Others will do it because they feel
that in some way it will improve their reimbursement or their
ability to practice. It may become a job requirement. All of
these need to be taken into account as motivating factors which
would help health care providers seek this information.

I agree that 100 percent of our health care workers
need to have basic information about HIV. They need to know how
to protect themselves from exposure. Some will need to know how
to manage patients in great detail, but all will need to know
about infection control procedures.

Let me close then as the time is running, with three
basic recommendations. The first one is that we would heartily
support the HRSA Education and Training Center approach.
Maryland was an unsuccessful federal grant applicant last year.
We will be reapplying again for a regional type of approach, a
multistate approach. We feel that this is the way that
providers will begin to have the curriculum and the oversight of
education that is needed now.

I think that the education, my second recommendation,
which you have, needs to be multidisciplinary in nature, and it
needs to be a hands-on approach; and perhaps in the questions I
can tell you about a demonstration project that Maryland is
funding to do that.

The third and last, and I must emphasize this, is that
the Federal Government has a very important role to play in
giving states direction; and I think a question about this came
up before. How is it that we in 50 different approaches are
going to attack the problem of AIDS? One way that has proven
successful over the years, and one only has to look at the
Maternal and Child Health program sponsored by HRSA, is through
a formula grant mechanism. One can take that $900 million
(federal AIDS budget) and divide it up on a pro rata share with
50 states and ask those states to do certain specific things.
We call that a state plan.

cpc has done this to a limited extent with us, but it
is not quite there. If we knew in advance how much funding was
available from federal resources, then we could go to state
budget people and say, "This is what the federal component will
be."

At the present time, many of our state budget analysts
are saying that, "this is really a national problem. It is not a
state problem. We had better wait and see what the Federal

324

 
 

 

Government is going to do." It is this kind of inaction or this
kind of insecurity and a lack of knowledge at the state level
that is really tying us up with respect to provider education
programs. Thank you.

DR. CONWAY-WELCH: Thank you very much, Dr. Fine. I
would like to introduce Dr. Marilyn Chow from the California
Nurses Association. Dr. Chow?

DR. CHOW: Good morning. Thank you very much, Dr.
Conway-Welch and members of the Commission. Thank you for
inviting the California Nurses Association to present testimony
on its AIDS health provider education and training project,
otherwise known as the CNA AIDS "Train the Trainer" program. It
is a program that can serve as an effective model for educating
health care providers in the country. As you heard yesterday,
many health care providers still harbor fears and
misunderstanding about AIDS that affect the delivery of patient
care. Ongoing education is needed to assure improvement in the
level and quality of health care for people with HIV infection.
AIDS education for health care providers is often ineffective
because while it transmits information about the disease
process, it does not address people’s values, attitudes, biases
or prejudices related to sexuality, IV drug use, death and people
of other cultures.

The California Nurses Association obtained state
funding to establish a statewide AIDS training program in June
1986. The focus of our program is to teach others how to teach
sensitively about AIDS. Between June 15, 1986 and June 30, 1988,
the CNA "Train the Trainer" program will have educated 1359
providers in California who in turn will have educated
approximately 33,000 health care workers in their setting. The
trainers have come from hospitals, home health agencies, centers
for the developmentally disabled, long-term care facilities and
health professional schools.

In addition, the program will have provided ongoing
+schnical assistance to the trainers in the form of updates and
a resource newsletter, and all of this was accomplished for the
sum of $600,000 over 2 years which breaks down to about $350 per
trainer or $13 per health care worker.

The four primary goals of the program are listed on the
left side of the poster panel. They are to increase health care
providers’ knowledge about HIV infection, to allay unwarranted
fears about AIDS which prevent health care providers from
providing adequate care to people with the HIV infection; third,
to provide innovative teaching strategies to enable AIDS
educators to achieve these first two goals, and finally to
decentralize AIDS expertise. The unique aspect of CNA’s "Train
the Trainer" program is that the trainer remains in the

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workplace, providing ongoing access to AIDS information on a
regular basis. The left side of the poster panel, also,
illustrates the "train the trainer" concept as actually used in
year one.

We had two training coordinators. They trained a total
of 759 health care providers, and they in turn taught 19,000
health care workers within basically a 6-month period of time.

The creation of an optimum learning situation and
utilization of strategies which engage the learner are critical.
Therefore the entire program is based on adult learning
principles which take into consideration the climate in which
learning takes place and the needs and experience of the
learners.

The program has three components: (1) pretraining
learning activities done at home by the trainer prior to
attending the training session, (2) attendance at a 2-day
training session where trainers learn how to teach the contents
and, (3) the trainers, teaching the HIV instructional program to
health care personnel at their facilities. The pretraining
learning activities included interviews, readings and a
selr-assessment of knowledge about AIDS and HIV infection. The
2-day training program is conducted by a training coordinator.
We keep the class size small so that there can be really good
group participation,, and so trainers have an opportunity to
practice teaching their peers about AIDS.

The training is organized into eight topics. I have
submitted copies of our program guide for the record. I don’t
have time to go into all of the topics, but the program is
culturally sensitive, and the final topic prepares the trainers
to develop their own lesson plans and discuss strategies for
marketing their HIV instructional programs to the specific
targeted health care group.

The third component, implementation of the HIV
instructional program requires each trainer to go back and teach
at least 25 other health care workers. The trainers tailor the
content to meet the target learner’s needs, and they select the
interactive teaching strategies which will enhance learning of
the health care workers. All health care personnel need ongoing
continuing education about AIDS and access to information about
AIDS and infection control procedures must be available at the
work site. Based on our experience, the California Nurses
Association makes the following recommendations.

First, to provide an AIDS "Train the Trainer" program
for health care providers throughout the United States with the
initial focus of developing trainers in the 10 states with the
most cases of AIDS.

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The second recommendation is to provide ongoing
technical assistance to trainers through continuing education
updates and a resource newsletter offered six times per year.
This capitalizes on your initial investment.

The third is to require health care facilities to
provide a standardized orientation program on AIDS for all newly
hired health care workers and to provide ongoing in-service
education to keep already employed personnel informed.

Our own evaluation found that the most common barriers
faced by trainers were lack of administrative support for AIDS
education and institutional constraints such as lack of
in-service time for staff.

Our final recommendation is to develop and implement a
core curriculum on AIDS for all students of health professions.

Thank you, again, for the opportunity to present
testimony. We would be more than happy to assist the Commission
in its further work.

DR. CONWAY-WELCH: Thank you very much, Dr. Chow. Mr.
Creedon?

MR. CREEDON: While the main focus of this particular
panel is not financing, Dr. Fine did mention that it would be
helpful from the standpoint of the State of Maryland if we had
some idea as to what the federal contribution to the state effort
would be, and of course, one of the subjects that we need to
consider carefully is the role of the Federal Government, the
state government, the local government and others in the whole
financing problem. I wonder if Dr. Matheny would comment on Dr.
Fine’s problem and elaborate a little bit more on it with respect
to timing?

DR. FINE:: I have been told by our budget people very
pointedly that they see AIDS as a national problem, if not a
world problem, and historically with sexually-transmitted
diseases in particular, the focus has been to channel dollars to
the Centers for Disease Control who then work individually with
states, both through assigning public health advisers and, also,
providing direct assistance and financial assistance to help
states control what is seen as a national problem. AIDS
certainly is in that category. So, the question that was put to
me by our budget people was how do we really know what the
federal contribution will be? We have the added problem that
our fiscal year doesn’t conform to the federal fiscal year. So,
there is always a problem that our budget process is over when
the decisions are made about available dollars and so forth.
This compounds the problem of our going to our own state budget

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people and saying, "We are going to need the following resources
for the coming fiscal year." The way we have gotten around this
in the area of maternal and child health is that we had a certain
dollar amount that we could count on historically. This was the
maternal and child health block grant which was previously called
a formula grant. It was based on some measure of the numbers of
mothers and children who met certain criteria and therefore, each
state was entitled to a share of an appropriation which was
decided on obviously by Congress and the President.

We think that a similar kind of approach is really
necessary to give states the necessary flexibility, particularly
in the health services area. In the education area, I think
ETC’s are providing some leadership and will begin to create the
regional training focus that is necessary, but we don’t have
enough of an assurance from year to year what will be the federal
contribution. CDC is providing right now to Maryland the largest
source of federal support, except for Medicaid, of course.

DR. CONWAY-WELCH: Thank you.
MR. CREEDON: Do you have any comment, Dr. Matheny?

DR. MATHENY:: I do think there is some distinction
between educational objectives for training, from what education
training centers are doing and the financing issues, and
traditionally the institutions like we have awarded the first
four grants to our institutions that have recognized leadership
role in health professional training, and it is, also, an issue
on a regional basis. So, virtually all states are covered and
would have access to the system, but the emphasis really here is
working with health professionals which traditionally has been a
leadership role of health professional schools.

MR. CREEDON: A related question, if I may? A related
question in everything that you are talking about and some of
the things we discussed yesterday is the cost of what you are
uving; wnat is the cost, what is the estimated cost of training
the nurses and the doctors and others who are in the provider
setup? Now, you have allocated so much to do it, but looking
down the road over the next years, how much do we need; what is
an appropriate amount? There should be no blank check. On the
other hand, we have to have an amount that is adequate to do the
job, so how do we determine what that is?

DR. MATHENY:: I will play with semantics a little bit.
I will say that what is needed to provide training, I am not sure
that we can show currently that we will train by -- I mean that
takes an evaluation effort to be able to accomplish. I would
emphasize that what we are doing is, also, trying to integrate
what this activity is within the entire scope of health care.
There are some AIDS-specific things that obviously are necessary,

328

 

 
 

but there are other things that really will be important to deal
with the aging population with the disabled population, and it is
very, very important to show that and to not go down the road of
being completely AIDS specific in any of this education and
training.

Health professionals need some of these skills,
knowledge and attitudes among the entire health care provisions,
and this is where we are trying to show the commonality rather
than just simply the individuality of AIDS as its own issue.

MR. CREEDON: I can see a distinction between saying
that we are not going to train people just to provide AIDS
service. On the other hand, you must have some idea of how many
doctors are out there, how many nurses are out there, how many
other providers are out there who need specific training in this
area and what it is going to cost us to do it.

DR. MATHENY:: Virtually the entire health professions
community needs to have some basic information and needs to have
some basic skills and attitudes. We don’t feel that virtually
any health professional can say that it is not applicable to that
particular person. There will be different levels.

MR. CREEDON: Do you have any reading what the likely
cost of that would be or can you give us some help in making an
estimate. Can you give us some information, perhaps supplement
what you gave?

DR. MATHENY:: No, sir, I cannot give you a bottom
figure. I can just say that what we have currently allocated is
roughly $11 million this year to work with these education and
training centers, but a considerable amount of this will be done
through the health professional schools themselves and through
cooperative efforts with other foundations. In other words, we
intend on being a catalyst. These centers will have to
demonstrate some self-sufficiency and ability to generate other
resources outside of our own grant awards.

DR. CONWAY-WELCH: I think Dr. Walsh has some similar
questions. Dr. Walsh?

DR. WALSH: I am delighted that our Chairman is more
benevolent today because I think this panel is making a
significant contribution that is getting down to some more
specific issues. You are preaching to the choir when you are
preaching to me about integration of training because I see so
many similarities in the resistance that at least three of you
described to when we tried to get people interested in geriatric
training, tried to get professors to include it in the medical
schools, tried to get the students and the residents interested
in it. These, too, are chronic long-term care people, and I

329

 

 
 

 

think what you have brought out, Dr. Matheny and Dr. Hurley and
all of you, is that maybe one of the mistakes that we have made,
is that because of the impact of AIDS as an acute infectious
disease which would, you know, the idea was that it could wipe
out the world, we have become so AIDS specific that we have
inadvertently built up a great deal of resistance among the trite
who say that it is not our disease; it is not our problem; it
belongs to New York, San Francisco, Houston, Baltimore and a few
other places but not us, and I just think that it is terribly
important that we have a change in direction.

Those who have suffered with AIDS, needless to say have
been able to market their disease, and they market it because of
great fear, but you have many of the same social and family
problems with chronic cancer patients. You have the same
personnel problems in the health care workers treating patients
with cancer that they know are not going to respond to
chemotherapy, that are going to die. You have seen the
psychological aspects of breast cancer time and time again
glorified on television and one thing or another, and I just
wonder if in our training programs we could not make them more
attractive to health professionals if we made them more
integrated and if the restrictions on funding to the research
training centers were not limiting in any sense to just AIDS
instruction but that we "Train the Trainers,". After all I have
been doing that for 30 years or more, and this is my life and
what I do, and what Dr. Chow has brought out is so eloquently in
her testimony, but just suppose those 33,000 people could apply
all that you taught them to helping and providing home health
care for people with cancer, for people who are elderly, that are
alone and so on. I think, as I said yesterday, AIDS gives us
tremendous opportunity because of the emotional grasp it has on
the nation to do an awful lot of good for integrating into
long-term care and chronic care of patients with other illnesses.

The resistance that is building is not a political
resistance but it is building on the fact that we have had for
all of our lives many patients needing long-term care, many
patients needing counseling. Who needs counseling more than the
family with an incurable cancer patient in the family or using
them at young or older ages, and so, I just was so delighted to
hear your philosophy on that that you feel it must be integrated.
I just think it is superb.

DR. CONWAY-WELCH: Would anyone like to comment.

DR. WALSH: And I think that the important thing -- our
benevolence just went out the window, but the important thing I
think that we have to find out is whether it is logical ina
center like yours, Dr. Hurley, to make that training more
attractive and to extend it so that so much of it would do it
auyway? Would more professionals, in your opinion, would more

330

 

 
 

 

professionals come in? Would the governor be more likely to give
up some of that surplus? I am taking Rich DeVos’ mantle today.
Why should the Feds come in, and why should you wait for the Feds
when you have got a surplus of damn near $100 million in the
State of Maryland from we, taxpayers? I mean why go crying to
the Feds? You ought to get to work without the Feds. I don’t
understand that philosophy.

DR. CONWAY-WELCH: Let me exercise the Chair’s
prerogative and ask for comments on that?

DR. HURLEY: Could I comment, please? I totally agree
with you, Dr. Walsh, and I think it, also, feeds into my comment
about people living longer and longer, and we need home care, and
we need hospice care, and those needs are certainly the same as
for other patients who have chronic illnesses. I think that
there is just one thing that we need to remember about this,
however. For example our ETC which covers New York, New Jersey,
Connecticut, Puerto Rico and the Virgin Islands. There are 35
percent of the AIDS cases in the country in this region. There
are some issues that just cannot be integrated into a typical
chronic illness model. AIDS is the No. 1 killer of women between
the ages of 25 and 29 in New York City. The homophobia and the
addictophobia has to be dealt with, and so, I agree with you 100
percent, but there are some issues. The number of young dying
people is different, and that issue needs to have a place in this
integration of long-term care plan.

DR. FINE:: I don’t want to defend the use of the
surplus in Maryland. I might remind you that there is a little
bill there that has to do with the Old Court payout, and that,
also, has to be taken care of, but I think that the issues that
you raised are very important. We are modeling on geriatric
evaluation services which are available statewide in Maryland
through local health departments and, also, our crippled
children’s services where we do in-depth diagnostic evaluations
ot children and develop care plans for those children with case
management.

We are drawing from those two approaches in Maryland to
develop an approach to the AIDS patient. We think that the fact
that the patient changes so rapidly and can go from acute
hospitalization to the need for chronic long-term care makes it
a particularly difficult problem. It is not a predictable
problem the way perhaps a cancer might be. One can have some
sense of what the course will be over time, so that there is
this changeability of the patient’s condition and some need for
medical specialists to be much more flexible; and I think that,
too, makes it unique in trying to approach the problem. All I
was pleading for was some leadership from our federal colleagues
so that we can begin to dovetail our efforts with theirs and not
duplicate, and I think our budget people are right in posing that

331

 

 
 

 

question to us. They don’t want to put dollars and lock
themselves into a budget item that they feel the Federal
Government is already intent on providing in any event,
surveillance, for example.

DR. CONWAY-WELCH: Ms. Gebbie?

MS. GEBBIE: I already started raising this question
earlier, and I really pose it to several of you. In the absence
of federal training grants to cover the whole country various
other agencies have already started programs. You have heard
about Maryland’s. The medical societies, the nursing
associations, the state health departments are, in fact, doing
training. In addition, each state’s experience with AIDS is
quite different. What you need to accomplish your services and
your education will vary for a whole lot of reasons. I have
seen enough federal grant programs to know that at times it is
possible to get away with, in your annual report, simply sending
back a copy of the brochure that lists five states in it, a list
of advisory committee members that shows you have at least one
person from each of five states and just say, "I am serving five
states or three states or 20 states," but in fact, the program
remains rooted, rounded, oriented and completely ethnocentric to
whatever home school has it. I am very concerned that we not see
this happen, and I want to find out what is being done to assure
that these centers will not just mail brochures to the states
they are to cover but will really check and make sure what they
offer is integrated with and complementary to whatever has
already been going on in those other areas.

DR. MATHENY:: I think that bears to some extent on
competent project officers and leadership out of my office, and
I certainly intend to do that to the extent possible.

DR. HURLEY: Could I comment on that? I think that for
each center -- I am speaking now for our ETC, the ETC in New
York. Certainly it depends on how the programs are developed.
For example, in our case, for our region which I have already
told you about, we have developed a professional association
model and in New York, New Jersey and Connecticut we have
subcontracted to professional nursing associations just in
reality because they are the largest body of health care
providers in the state to do interdisciplinary workshops, ranging
trom 14 to 20 hours of didactic plus clinical experience. They
will run those programs in their state with the ETC faculty
providing the curriculum. We, also, have interactive video
conferences that will reach 100 sites within our region for
primary care providers and dentists. So, I think that if
programs are developed in that manner, you are almost assured
that it is not confined to the home base.

332

 

 
 

 

MS. GEBBIE: How did you evaluate that the nursing
association as the appropriate subcontractor, would, in fact,
relate to what was going on in those states, was going to be an
acceptable leader in that process?

DR. HURLEY: Yes, in the course of developing the
programs, we spent many, many days in each state and indeed, the
nursing association will act as the liaison to the state
departments of health, and the state departments of health are
going to be directly involved with the advisory councils. State
Nurses Association will liaison, also, to the other professional
associations, medical associations, social workers, occupational
therapists and so on. So, they are networking with us and the
state department of health, and that is the way we intend to do
it and are doing it.

MS. GEBBIE: Thank you.
DR. CONWAY-WELCH: Dr. Lilly? Dr. Chow?

DR. CHOW: I, also, want to comment on that. The
California Nurses Association’s perspective with the "Train the
Trainer" program, what we have done is to work with, say, other
states or other interested hospitals or, for example, the
Veterans Administration. Recently, the VA invited CNA to doa
presentation on our "Train the Trainer" program specifically for
consideration of adapting that system, so resources are utilized
effectively and programs are not reinvented. We have a program
that works fairly well, but we know that it needs to be adapted
to particular systems, and we have worked with them through an
advisory committee to be sure that the program is adaptable to
their system.

DR. CONWAY-WELCH: Thank you. Dr. Lilly?

DR. LILLY: I would like to pick up on a couple of
aspects of the training in particular, and one of the upcoming
hearings before this Commission will deal extensively with the
subject of AIDS-related discrimination. We have already had
AIDS-related discrimination mentioned to us in a number of
contexts, discrimination with respect to employment, with respect
to housing, with respect to insurance and so forth.

Two of you, Dr. Matheny and Dr. Hurley, mentioned
homophobia and other forms of AIDS-related discrimination. I
think that in a sense this could be an exception to what Dr.
Walsh was talking about, that in fact, the chronic cancer
patient was faced with something similar a generation ago when
cancer was a dread disease but that is no longer so true now,
whereas there is a great deal of potential for discrimination,
ana £ would simply like a little bit of discussion of that,
since I think this is certainly one of the first times that

333

 

 
 

 

aspect has been brought in front of this Panel, and I wonder if
you could discuss the aspect of homophobia with respect to
patient care specifically, just briefly?

DR. MATHENY : I just touched on the, which I think, if
I interpret Dr. Lewis correctly, it is one of the first times
that competence has been related to prejudice, and it actually
did show that people who were more, that had rated higher or
lower, however you defined on the homophobic scale among primary
care physicians actually demonstrated less competence in dealing
with AIDS-related issues on this group of people that he was
studying. It is a real issue and a real important one. I think
it ic going to probably be the most difficult thing to teach
which is teaching attitudes. It has always been educationally
much more difficult than teaching from a knowledge base. I would
defer to Dr. Hurley whom I am sure has had a lot more experience
with that.

DR. HURLEY: In practice it is a problem, and it
basically comes down to quality of patient care. If you have
health care professionals who really see drug addicts as, quote,"
throwaway people", it actually directly affects patient care, and
we need to develop more strategies. We have been doing values
clarification in other areas of professional education for years,
particularly in nursing education, and role playing values
clarification, those kinds of things need to be certainly
incorporated into the curriculum for any of these programs. I
think, for health care professionals who don’t have great
exposure to AIDS patients the fact of having a person with AIDS
come into programs and talk to them and share their patient
experiences with them is very helpful in overcoming some of these
problems.

DR. LILLY: I was wondering what kind of education are
you aiming at for the practicing physician to deal with the
problem of prevention education of the people that they are
treating, in particular sexually active patients who do need
counseling and are the physicians being trained to do that
counseling?

DR. MATHENY:: We are working in two ways, both through
the education training centers and having developed a really
strong working relationship with most of the major specialty
societies who have the greatest amount of involvement. In turn
each of these specialty societies have developed, of importance,
have developed AIDS task forces which in turn are developing
specific curricula which will be aimed at that, incorporating
this in their conferences with workshops, making a major effort
with newsletters. I would give an example. The American Academy
of Family Practice, Family physicians, has developed a patient
education newsletter that will be sent out to every practicing
member of the American Academy throughout the country which is

334

 

 
 

Po

the largest group of primary care physicians. This, in turn,
will be available in a packet to be used for education materials
with a hotline to their own library source, and in turn this can
be complemented by the education and training centers.

This is only one example. It is occurring in other
professional societies, American Osteopathic Association, a
number of others, but we are encouraging this through our office
and with the Bureau of Health Professions through our
cooperative agreement, and this is one of our main prerogatives
out of our two bureaus together.

DR. FINE:: Dr. Lilly, our medical society has made a
series of speakers available to local medical societies
throughout the state with the objective of trying to go and see
if physicians have this basic information, give them the basics
about AIDS and try to deal with their attitudes; and what we find
increasingly is that it is the attitude piece that takes up the
most time It is working through the physician’s feelings about
hamncexuals or whatever relates to that particular population of
patients, and many physicians in these local medical societies
have never seen a patient with AIDS because they are in the
outlying areas. So, this is a recurring theme for us.

DR. MATHENY:: Just a comment, too, Dr. Lilly, is that
another initiative of education and training centers is really
to aim very early at the people who are teaching in the
residency programs and the graduate programs themselves because
it is very difficult to work with residents or medical students
unless the faculty themselves have some of these capabilities.

 

DR. LILLY: I am very aware of that. We have a rather
brief program of training in human sexuality of our first-year
medical students in our school, and the feedback that I get from
the students is that is worthless. It does no good to anybody,
at least as taught there. I mean I am not talking about the idea
of doing that teaching, but I think we might need some trainers
for that kind of training.

DR. CONWAY-WELCH: I suspect your school is not the
only one with that problem, Dr. Hurley. Ms. Pullen?

MS. PULLEN: I apologize that I have had to be out of
the room for part of the presentation. You may have covered
this. The answers to the last question touched on it a little
bit, I think, or saddled up toward it, but I would like to know
from any of you what strategies you have or can conceive to
overcome MD apathy and get doctors to care enough to actually pay
attention to the education that is being thrown at them, even to
the point of learning to diagnose which I think a lot of doctors
do not know and don’t understand that they need to know?

335

 

 
 

 

DR. MATHENY:: Again, I don’t think all of this can
really occur just through the education and training centers. It
is really a multipronged approach that occurs through
incorporating some of this into the specialty boards, into the
recertification. There have been suggestions which is not in
our turf into relicensure, into emphasis by the professional
societies themselves which is really going to create a great
emphasis. Obviously the AMA has been in a very important
leadership role, the ANA, the American Osteopathic Association,
all professional groups, and it is working with these and
coordinating efforts. I think our responsibility is to see that
this is done and that we work with them and share a lot of this
information.

In the education and training centers it is provide
this in a continuing medical education format for practicing
physicians. You are correct, you know, the difficulty is there
is a whole generation of people who are practicing who did not
have the skills taught in medical school, during residencies, and
many of them have natural abilities to perform them, and a lot of
others don’t, and it will be very important to make sure that
this improves. Being able to take an adequate sexual history, as
I mentioned, is something that not the majority of practicing
physicians do or do well.

DR. HURLEY: I would like to add to that. I am not so
sure that it is apathy per se. My experience is that we have
pockets of high incidence of AIDS with physicians and primary
care providers who are very sophisticated, and then in the
periphery of the area we have primary care providers, with
different experiences. Perhaps it is apathy, but perhaps, also,
it is just not having been exposed to the information, and in
hurried and active lives and very busy lives it is difficult to
get the time to go to the place where it is all happening to get
the information that you need to do accurate diagnosis, for
example. The approach that we are taking, and we certainly will
evaluate it is to provide interactive video conferences for
primary care providers that will go out in our region to over 100
sites, primarily hospital bases where physicians and dentists can
view programs and then pick up the telephone and ask the speakers
questions and get the information that they need. We hope that
this will be a very effective way of addressing the problen.

MS. PULLEN: Some of your teleconference sites will be
in hospitals?

DR. HURLEY: The satellite, as I understand it and the

footprint that it covers, covers a whole network of hospital
sites for video conferences for health care professionals.

336

 
 

 

MS. PULLEN: So, all you have to do is persuade the
medical staff at the hospital to sponsor this for everybody to
come in?

DR. HURLEY: It is already sponsored.

MS. PULLEN: As opposed to getting a doctor to come
from his office to some Holiday Inn somewhere where they are
having satellite?

DR. HURLEY: Exactly. The ETC is sponsoring the
srograms, and the video network is already in place through
satellite communication. So, we will direct our programs to the
hospitals, and it is right in their home base.

DR. FINE:: I would caution that those individuals who
take part in such programs are usually those who have already
decided that they have a basic interest in doing this. Either
they are providing the care or for some reason they feel that
they wish to inform themselves better. I think that the ETC’s
have an obligation to document what proportion of the health
provider community is truly participating in this and that we are
not continually preaching to the converted.

DR. HURLEY: I have no question that we will document
it. I don’t think the suburban and rural sites that these
programs are going to are the converted. I mean we are talking
about program in very low incidence areas.

DR. CONWAY-WELCH: Thank you very much. I would like
to ask one question, probably of Dr. Hurley. I know because of
my professional involvement that schools of nursing around the
country are looking at their curricula and identifying what they
are and are not doing, not only in regard to AIDS but infectious
disease and immunosuppression problems, etc. Do you have the
sense that is occurring in schools of medicine, as well?

DR. HURLEY: I am not really sure how much. I was at a
meeting recently where one physician colleague said that it was
easier to move a cemetery than it was to change the curriculum of
the professional school.

DR. CONWAY-WELCH: I can identify with that.

DR. HURLEY: My intuitive sense tells me to say that I
don’t believe that it is happening to a great extent, but I have
nothing to base that on except my experience.

DR. CONWAY-WELCH: Mr. Chairman?

CHAIRMAN WATKINS: Let me ask you, and I don’t want you
to focus only on this suggestion but maybe as a trigger mechanism

337

 

 

 
 

 

for dialogue. We heard from the Dental Association yesterday
that very serious question, certainly in my own mind, if not in
any of the other Commissioners is whether or not there still is
such fear and concern with the health care professionals that we
even have ethical standards that differ from each other for the
same issue, and while that is understandable in the early stages
of infectious disease, it doesn’t seem to me to be a very wise
objective for the long haul. Is there not as urgent need to bring
American Medical Association representatives and their ethics
committees, American Dental Association, the nurses association,
the hospital association and other people representing health
care providers at a rather high level effort to get at this
attitude issue because if the health care professionals don’t
have the caring and the courageous attitude necessary to deal
with this at the front end, how do we expect the American people
to be able to calm down and to be able to follow suit? Isn’t it
the horse before the cart to get the health care providers to be
fully on board on the issue. It seems to me the attitudinal
rrekiem, and we see this on all our field trips, needs
leadership in these professional organizations to come to the
fore and face this issue up front and talk about it in a very
discrete way. I think we would send a signal out to the nation
that the health care providers of this nation are together on
this, and this is the way we are going to try to inculcate that
into the youngsters coming up and to the older health care
providers that have been there a long time that just aren’t
tuned in on the right frequency yet.

So, I am just throwing that out. There may be other
techniques, but I am bringing this out because we are in open
session, and I would like to hear some comments back from you on
that, how you might go at that. Instead of just saying that it
is an attitude problem, and we have got to change it, and we
will educate and so forth, isn’t there something more aggressive
from top down that we can do on this issue and face it more
forthrightly as a specific health care provider problem when we
have the kinds of things we heard yesterday where four out of
five dentists have not only a fear of working on the AIDS patient
but have a fear that they will lose their other patients. You
know, it is hard for me to reconcile that in my own mind as to
the rationale that allows a referral policy that says that you
must serve all AIDS patients unless, of course, you don’t feel
competent to do it because you, are not technically qualified to
deal with people with infectious disease. This seems hard for me
to understand since we have had infectious diseases around.

So, I just say that if there is confusion there, how do
we expect the American people to understand and to be less
confused?

DR. MATHENY:: Admiral, I fully agree with you on that,
and this national consensus group that convened with the Bureau

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of Health Professions in November in Baltimore was to really
achieve that first step in this. These were the leaders, the
people that you are talking about representing organizations we
feei should be there, and I think it was a good initial first
step. We intend to follow up on that with subsequent similar
meetings. Those, in turn, are going back and working with their
own professional organizations to bring these to their general
membership and to the policy people in those particular
organizations, and I think it will, and those are the
recommendations that I intend to share with you when the
publication is coming out this week.

CHAIRMAN WATKINS: So, you will send that to the
Commission?

DR. MATHENY:: Yes, sir.

CHAIRMAN WATKINS: I think it is extremely important if
we are all pulling together on this nationally that people in
your business just simply have to be precursor to a national
understanding, and it seems to me at that point then that your
very fine education and training centers have the potential for
linkage into the basic education process for all others because
if you all feel that you are together on what has got to be done
here and where we are going, then it is easier for us to build
curricula elsewhere for others. However, if there is confusion, -
and we are not sure, and there are attitudinal problems, it is
going to be very hard to convince others to change their
attitudes, if the health care providers aren’t pretty much
together.

The second point I would like to make, I would like to
know from you, Dr. Matheny how many requests for grants from
states last year did you get that you could not acknowledge, you
could not fund. I assume it was resource constraints, that Dr.
Fine probably put in a reasonably good request, and you have to
divide your money out, but I would like to know how many have
come in from the states that want these training centers. How
many did you have to turn down; what was the cost of the requests
that they came in with and perhaps any other input you have as to
why they were not possible. It seems to me that in that concept
you have is the potential, even on a small scale in those states
that are not all that wound up with this disease yet to lay the
groundwork for the future and by doing that and setting up the
models now, even on a very modest basis, you lay the groundwork
for the future, and in doing that you already have begun to
generate an educational process that is very good for the state,
for the local people and so forth, and it seems to me you might
have in your own concept the potential to change things in the

nation as a whole by allowing your concept to be moved more

339

 

 
 

 

aggressively elsewhere and perhaps not on the grand scale it
needs to be in some of the more heavily dense areas of the HIV
epidemic. Can you respond to that?

DR. MATHENY:: Yes, sir. I cannot remember the exact
figures off the top of my head. I think that there are around
300 requests for the four centers that were funded for
applications. Out of that, I think that we had well over 40
applications that were completed, I believe. I would have to
check my figures. Of those, we only had the funds because of
iue way that we had said that we were going to award three. We
actually were able to get some funds through joint effort with
the Bureau of Health Professions to do early funding for a
fourth one because we felt that the need was very strong through
their generosity, and with the additional amount of money we had
intended on having 10 to 11 centers funded this year. So, they
will all be up and running and funded, probably by the second
week of March.

CHAIRMAN WATKINS: Will you have given a positive
response then to all the states for what they think they need?

DR. MATHENY:: Right, by the second week of March,
would be my guess. The grants are due in next Tuesday. The
awards will be made by the end of February.

CHAIRMAN WATKINS: So, there is nothing the Commission
need do there in your area then to assist in the training
process?

DR. MATHENY:: It was awarded. We were already ready
to go out with award announcements, and they should be, hopefully
implemented well’ within the third quarter.

CHAIRMAN WATKINS: And does everyone know what is going
on with these projects at the ETC’s in other states and other
health providers? Do they know that what you are doing, what the
results are; how do you coordinate all that?

DR. MATHENY:: Obviously we published the notice in the
Federal Register, and in addition we have been making this very
well known to all professional groups, educational
organizations, sharing this information with, for instance, the
ANA, the AMA, the American Association of Medical Colleges
drumming up as much enthusiasm and interest as we could possibly
do.

CHAIRMAN WATKINS: Are you getting any interest by the
American Dental Association in joining in the ETC’s and helping
out.

DR. MATHENY:: Considerably. They are very interested

340

 

 

 
 

 

and very concerned.

CHAIRMAN WATKINS: Let me ask this general question; is
there any need for a generic national AIDS clearinghouse to
support training health care professionals in AIDS?

DR. MATHENY:: Directed to me?

CHAIRMAN WATKINS: You probably are the best one to
answer today. Is there such a need; is it clearly identified and
is it effective?

DR. MATHENY:: Yes, sir, there is one at CDC. It is
under the CDC. I think the award grant is for $4.5 million
recently awarded to Aspen which is a Rockville-based
organization. It was awarded, I think, October 1, and since at
cpc I don’t know a lot of the details concerning the award, but
we lave expressed the hope and are working with CDC on making
sure that this will be helpful to health professionals, as well
as to the general public for a clearinghouse for information.

In addition, the education and training centers will be
doing information gathering and sharing, and Dr. Hurley probably
can comment on that.

CHAIRMAN WATKINS: Have any of you had association with
this AIDS clearinghouse that CDC has set up at this point, and
are you satisfied that it is moving in the right direction?

DR. HURLEY: Yes, I certainly am. I, also, would like
to add one comment. I appreciate what Dr. Fine and the State of
Maryland are doing in terms of educating their health care
workers, but I think that the type of program that states may do
in terms of education for health care workers is perhaps
different than what the AIDS regional education and training
centers are trying to do in terms of educating health care
professionals. I really believe that those training centers
must be very closely connected with academic health science
centers because this is where the research is going on, and if
we are going to educate health care professionals, we must have
very close connection with the latest research and the latest
information that is going on within the network of research
activities. So, I think that there are different levels of
education that we are talking about or can talk about, and --

CHAIRMAN WATKINS: Is there something, Dr. Hurley, that
this Commission can do? Are you asking the Commission to do
something along the lines of your discussion here or is this
something that is purely within the state; it is well known and
just probably isn’t that well executed at this point in time in
the stages of this disease?

341

 

 
 

 

DR. HURLEY: No, I am trying to clarify in terms of
states’ participation and their role in education of health care
workers and health care providers and what the AIDS regional
education and training centers are doing and how those two things
may mesh and be the same or may be different. I think that is my
point.

DR. CHOW: I would like to, also, comment on that. I
think it is important that the federal clearinghouse, also
establish linkages with the state and local levels. For
example, in our project, we are funded by the state, and we may
or may not be known to, say, federally-funded group unless we
made our efforts and our project known to these federally funded
groups. So, I would urge the ETC’s to be sure to make the
linkages both at the state and local levels so that each level is
aware of all projects.

CHAIRMAN WATKINS: Has that particular point been made
to the Centers for Disease Control?

DR. MATHENY:: Yes, sir.
CHAIRMAN WATKINS: And, did they agree with that?
DR. MATHENY:: Yes, sir.

DR. FINE:: I would like to support Dr. Hurley’s
statement and, also, point out that many of our health
professionals are seeking accreditation, continuing education
credits, and of course, it is our academic institutions that
provide those, but it costs a great deal of money salarywise to
support education in the academic setting, and I think that
$500,000 which is the average award for an ETC is considerably
short of what is necessary to establish a regional presence to do
that kind of education in the academic setting.

CHAIRMAN WATKINS: Dr. Matheny?

DR. MATHENY:: Those awards will probably average
greater than that due to the increased appropriation for this in
the last --

CHAIRMAN WATKINS: But that is dealing with the budget.
That is getting back to Mr. Creedon’s comment earlier, that you
are doing well with the dollars you have been given. I guess
what I am asking is what does it take to deal with this thing, to
take full advantage of the impact of the ETC concept in the
nation or training and educating health care professionals. It
seems to me that there ought to be at least a line that you all
set that says that is what we would like to do. Here is where we
are. Here is where we ramped up because of doubling of the
Congressional budget. This is what we can really manage in it,

342

 

 
 

and this is where we really ought to be going in the nation on
this, and the question is, is that kind of need well defined in
your organization, and can you provide it to the Commission?

DR. MATHENY:: I think so, and I think with the $11
million that we were awarded this year, and we have 11 centers,
that obviously makes the budget much more comfortable for them to
do regional activities than it would have been before that was
awarded.

CHAIRMAN WATKINS: It doesn’t seem like $11 million in
the kinds of dollars we have been talking about overall is
significant relative to the potential impact of what that $11
million is going to do with a lot of health care professionals.
I guess that is my point; it seems to me that it is a very cost
effective concept to begin to set national attitude and tone
through the health care professionals. If I am wrong in that
concept, let me know, but I think it has been an inspiring panel
along those lines, and I would like to know if you agree that
that is a point.

DR. MATHENY:: I think that we will have to determine
that after seeing what has been accomplished during this first
year. That is about all the comment that I can make at this
point on the budget.

CHAIRMAN WATKINS: Without being fired or what? How
about Dr. Hurley?

DR. HURLEY: Certainly I think your question is there
enough in the budget for the education of health care
professionals. Is that correct?

CHAIRMAN WATKINS: Yes and properly done and
responsibly delivered. Obviously I am not talking about a wish
list. I am talking about some hard stuff that the: ETC’s have
already demonstrated. Shouldn’t we be moving more aggressively?;
what should we be doing with the states that are not so heavily
impacted now to lay the groundwork for the future and perhaps
even by so doing set up deterrent mechanisms? They will begin to
infiltrate into the education process to possibly deter future
cases of disease. It just seems to me there is a vehicle here and
a mechanism that wins a lot of friends and doesn’t alienate very
many people.

DR. HURLEY: That is correct. I think that the
budgeting for -~ I appreciate your question, Admiral Watkins, but
the thing is that we have not had a great deal of experience in
evaluating the education and in costing it out. The NIMH project,
for example, was funded in November 1986. Our budget was
approximately $175 thousand for the first year. We were able to
provide various levels of education for health care providers,

343

 

 
 

 

both paraprofessionals and professionals, some more intense than
others, all on the mental health and psychosocial aspects of HIV.
We educated over 2000 health care professionals, physicians,
dentists, etc., and very effectively. Our evaluations were
great. This larger effort of the ETC however, which I believe is
going to be a very, very effective one, was funded in September
1987. There is very little data in yet to say, "Are we getting
enough money?" I would say, "Of course not; you know, we
certainly can use more," but I think we need to have hard
evidence to support that.

MR. CREEDON: Admiral, one of the things I don’t
understand in talking about the education is to what extent it
involves cases, you know, actual cases.

DR. CONWAY-WELCH: Do you mean hands-on clinical, is
tnat what you are saying?

MR. CREEDON: Yes, in other words to teach a nurse how
to take care of someone who has AIDS I would think on-the-job
training is what I believe in most strongly, and I think videos
and conferences and seminars and lectures and all that is
important, but you know, when you teach a doctor to become a
doctor, you at some point have him deal with live cases in the
hospital, and I don’t know to what extent in this arena we need
the same thing, and if we do need it, then in terms of dollars
and costs, I think you are talking about --

DR. WALSH: One thing, I don’t think you can put too
great a burden on education. There are some real candid facts
that we have to face, and you do the best you can with education,
but out of deference to the physician, a physician is not as
ignorant about this disease as you think. He probably knows
more. These patients take, he knows, an inordinate amount of
time. He has the same problems that the institution has. He is
paid at a Medicaid rate if he takes them, in most cases, and
while he can have all the compassion in the world and all the
education in the world, he has to balance his obligations with
wac rest of his practice, and I think you have seen it in nursing
homes and everywhere else with nurses. There is just a limit to
what nurses can do when they are caring for the elderly, and they
Suddenly just run out of gas and say, "I just cannot do this
anymore. I have got to do something else," and I think we
shouldn’t put the burden on those of you charged with education
to solve all of these human personal relationship problems that
physicians and nurses have. You can do the best you can, but
there is a limit as to what you can, what the return to you can
be. I mean it doesn’t mean you stop trying, but you want to be
realistic.

DR. CONWAY-WELCH: Ms. Gebbie has one more quick

344

 

 
 

 

question, and we need to close because we are almost 20 minutes
late.

MS. GEBBIE: I think in describing the number of grants
that you got and the number that were finally approved and the
number that were funded and then what you plan to do in the
future, you indicated you will be at 11 next year, and it sounded
like at that point you will have the country blanketed. You will
be able to draw a map and show cross hatching that includes every
state, but some of those areas are fairly large, and you still
have some other good applicants that would subdivide those
regions, and I think one of the relevant questions is do you fund
only those 11 because you have covered every state in one way or
another or would you at a future point subdivide and have 22 or
28 or 30 of these centers so that they could more intensively
relate to a smaller geographic area? I think it would be helpful
for us to see what your map will look like and any long-term
plans you have to make it more intensive instead of just resting
once you have covered the map.

DR. MATHENY:: I think that is a good point, and I
cannot say what will happen with that. It is just that the
feeling is that I think that the centers at that level probably
can more than adequately use that level of funding, and it is
difficult to say that we would undercut the activity because
doing a regional kind of activity is going to be difficult enough
with what they are currently doing, and by expanding that effort
we are probably pushing them to their limit right now. So, I
think we just have to wait and see how successful they are.

MS. GEBBIE: You might make it easier on any one region
if you made it a smaller region which would take more grants.
That is the reason for raising that point, and that is enough on
it right now. I think we can just see some planning.

DR. CONWAY-WELCH: Thank you very much. I would like
to thank the panelist. Mr. Chairman, do you have anything
further?

CHAIRMAN WATKINS: No.

DR. CONWAY-WELCH: We appreciate your time, and we
would like to move rapidly to the next Panel. Thank you.

I would like to welcome you, and we would like to begin
by asking you if you can try to confine yourselves to 5 minutes
as we have asked in terms of recommendations because obviously
the questions and answers are very important to the Commission,
as well, and I want to make sure we have as much time as
possible.

I would like to suggest that we extend until 12:15

345

 

 
 

today so that we do have a sufficient amount of time. Mr.
Chairman, is that acceptable?

CHAIRMAN WATKINS: Yes.
DR. CONWAY-WELCH: Thank you very much.
CHAIRMAN WATKINS: Twelve-thirty?

DR. CONWAY-WELCH: I am sorry, to 12:45. We are
scheduled until 12:30; we will have the opportunity to go to
12:45 if we find that questioning warrants it. Otherwise we will
stop at 12:30. I would like to begin by introducing Dr. Vivien
DeBack. Dr. DeBack is Executive Director of the National
Commission on Nursing Implementation Project. Dr. DeBack?

DR. DE BACK: Thank you. I appreciate the opportunity
to be here and will address immediately my three recommendations.
Before I do that, however, let me comment on the three
assumptions that my recommendations are based on. The first one
is that there is going to be a needed additional expenditure of
funds for AIDS patients because of the increase numbers of people
with AIDS, expected that we are going to see in the future. If
we can agree there is going to be an added expenditure, the next
issue then is how we address that problem and figure out ways to
keep the expenditure at a reasonable level.

My second assumption is that the AIDS patients need
Support and care which is different from the present diagnosis,
treatment, cure model that is in place, and one of my
recommendations deals with that. The third assumption is that
there are systems in place that should be utilized more
effectively in approaching the issues of education and
prevention and identifications of persons likely to come in
contact with the HIV virus. My recommendations then, based on

those assumptions are first to develop a standardized system of

care management in which professional nurses manade the care and

services of diagnosed AIDS patients.

Now, I know management of care has been talked about in
these hearings over the past 2 days. I would suggest that if the
profession nurse is the care manager, clients will receive the
necessary professional and technical nursing care for managing
infections and preventing them, for securing respite care for
families and friends, for educating families, educating patients
in self-care, as well, for connecting patients with community
resources such as Meals on Wheels and for utilizing community
volunteers and coordinate all those services. The professional
nurse is not only capable of doing that, but is already ina
position to carry out those kinds of activities.

The Community Nurse Organization and Ambulatory Care

346

 
 

 

Act that came out of the December legislation is a concept we
may be able to apply to the care of AIDS patients. While that
particular Act deals with Medicaid patients, specifically Part
B, there is nothing in the Act that precludes the community
nurse organizations from enrolling other types of patients.

The important thing is the community nurse organization
would have in place the kinds of people necessary for a managed
care system for AIDS patients.

My second recommendation relates to reinstating the
lost federal funds for nursing education so to increase the
supply of baccalaureate and higher degree nurses who can act as
case managers for AIDS patients. I further recommend increasing
the efficiency and effectiveness of the present nursing care
delivery system by supporting differentiated practice which is
designating role and position of nurses based intentionally on

education and ability.

It is important to note here that in our present system
nurses graduate from a variety of different educational programs
with different educational outcomes, and when they get into the
work field are employed in the same work roles. We consider that
kind of activity not only inefficient but believe that it
contributes to the difficulty in recruiting professional nurses.

Now, I don’t have to tell you about the shortage of
nursing in this country. Really what we are experiencing right
now is not so much a shortage as an increased demand for of
nurses, both in and outside of institutions. What we must also
realize is that there is a more serious shortage ahead of because
we have a decreasing number students entering into nursing
schools.

The shortage, present and future is a very complex
issue, and I don’t want to get into all of that, but it is
important to recognize that there is a direct correlation between
ageCreased financial aid to nursing education and he numbers of
students in nursing schools.

So,_reinstatement of lost funds for nursing education
and utilization of nurses by educational background, as well as
compensation for educational qualifications would offer us some
relief, not only from the cyclical of shortage but provide us
with the nurses we need for AIDS patients.

My third recommendation is that we increase funding to
systems that are already in place to improve the effectiveness
of those systems by increasing educational opportunities related
to reducing the spread of the AIDS virus for community health
care professionals.

347

 

 
 

 

We already have in place community nurses, school
nurses, home care nurses, occupational nurses in the work
setting, public health nurses, clinic nurse, HMO nurses,
independent care nurses. They are already taking histories,
providing sex education, counseling on drug abuse, identifying
persons at risk for the HIV virus.

Unfortunately, we have no common communicating system
to touch base with all those nurses. Not all nurses subscribe to
professional journals. There is no common mechanism to
successfully contact the almost 2 million nurses in this
country. I have been listening to ad campaigns and the various
ways we are attempting to educate the professionals of this
country. But it is important to understand that lacking a
common communication mechanism for our nurses puts us in a
position of having to come up with multiple sources and multiple
ways to touch base with them, not only the means using the
national and local lay media but, also, the professional
literature.

In addition, the regional educational programs that I
just heard about need to consider that nurses ordinarily are not
released from their work experiences to take part in
educational programs. Nurses often do not have the personal or
institutional funding available to them. These factors need to
be considered as we begin to educate our nurses.

I appreciate the opportunity to bring these
recommendations to you and look forward to discussing them with
you later.

DR. CONWAY-WELCH: Thank you very much, Dr. DeBack.

We would like to introduce Ms. Jeannee Parker Martin.
She is Director of the AIDS Home Care and Hospice Programs of the
Visiting Nurses Association of San Francisco. Welcome.

 

MS. MARTIN: Good morning. I would like to thank the
Presidential Commission for inviting me to present testimony
related to the nursing care of persons with AIDS. Since
mid-1982, the Visiting Nurses and Hospice of San Francisco has
cared for more than 1500 individuals with AIDS in its home
health agency and hospice programs and more recently in its
residential care facility Coming Home Hospice, a facility which
sevecal members of the Commission visited on a recent trip to
San Francisco.

With a staff of more than 300 professionals and
volunteers who provide care for an average daily caseload of 73
AIDS patients, I feel well prepared to discuss the issues related
to nursing care.

348
 

 

The AIDS epidemic has challenged every facet of nursing
care. Nurses face complex physical, as well as psychosocial
problems in the care of the person with AIDS. The complexity of
these problems is compounded by yet other considerations; one,
inadequate training and education of nurses; two, lack of access
to information about infection control; three, inadequate methods
to support nurses; and four, lack of alternative nursing care
when hospitalization or home care is no longer appropriate for
the patient. Nurses throughout the United States although eager
for information, remain largely uneducated and ill prepared to
care for individuals with AIDS. Due to the complex nature of the
nursing care that is required for persons with AIDS, I would
like to make the following six recommendations:

Recommendation No. 1. The Commission must enlist the
support of and encourage the collaboration between nursing
organizations to provide training and education throughout the
United States. These organizations include the American Nurses
Association, the National League for Nursing, the Federation of
Nursing Specialty Organizations and the California Nurses
Association AIDS "Train the Trainer" program.

Daily nurses are faced with new problems related to
neurological changes, pain and symptom management, treatment for
the palliation of multiple opportunistic infections, as well as
experimental interventions to help with the treatment of HIV. It
is essential that nurses are fully informed about ali
opportunistic infections. Up-to-date information must be
readily available in all health care settings. Such education
will encourage appropriate and timely nursing interventions.

Recommendation No. 2. The Commission must enlist the
support of nursing organizations to develop nursing standards of
care for the person with AIDS. Such standards will ensure that
appropriate care is provided in every setting. Currently nurses
who have little experience dealing with AIDS are attempting to
provide interventions and compassionate care.

At national organizations experienced practitioners are
developing standards of care for the care of the person with
AIDS. You must support these efforts and expedite the delivery
of information to nurses across the nation.

Recommendation No. 3. The Commission must promote
nursing research and identify financial support through both
federal, state and local agencies. Such research will provide
accurate information for training and education of nurses caring
for persons with AIDS.

Recommendation No. 4. The Commission must develop
mechanisms to provide support to nurses caring for persons with
xiDS. For example, changes in licensing and certification

- 349

 

 
 

 

requirements for Medicare and Medicaid programs must be
encouraged. Such requirements would include support groups,
interdisciplinary team conferences, flexible work weeks and
adequate staffing patterns. These efforts will increase staff
retention, prevent burnout and promote career development.

As you have already heard in other testimony, the
person with AIDS suffers from a plethora of psychological and
social problems. Some patients live alone. Others come from
non-supportive home environments. Many patients suffer from
dementia or symptoms causing them to rely on others for
assistance with all activities of daily living. Yet other
patients have substance abuse problems which interfere with
their ability to carry out treatment regimes, remember clinic
appointments or simple tasks of daily living.

All individuals with AIDS are facing a terminal
diagnosis and will confront multiple issues related to death and
dying. In both hospital and community-based settings, nurses
must face many challenges with every patient. Such constant
demands on the nurse are stressful in any environment, but nurses
may be unprepared to intervene with these complex problems and
will require special support.

Recommendation No. 5. The Commission must identify and
promote alternatives to hospital care when acute care is no
longer required by the patient. Such access must be available
to all persons with AIDS, including those with substance abuse
problems. You must elicit support of home health agency and
hospice organizations to promote such access to care.

These organizations include the National Association
for Home Care, the National Hospice Organization and the Hospice
Association of America. The complex physical and psychosocial
problems of the person with AIDS often pose a barrier, a fear and
misunderstanding in the nursing home, adult day health care, home
care or hospice setting and may prevent discharge from the
hospital.

For example, greater than 80 percent of our patients
have severe memory loss, confusion and weakness, requiring
supervision around the clock by family, friends and attendants.
Family members may be afraid that they will be unable to provide
the necessary care at home and discourage discharge from the
hospital.

Some individuals with AIDS live alone and are unable to
return home, unless adequate supervision is available. Nursing
homes have been largely inaccessible due to limited bed capacity
and untrained staff. Adult day health centers and residential
care facilities are now being explored in some cities, but
Similar barriers exist in these settings, as well. Access to

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alternative care will greatly reduce the existing burden on
hospitals throughout the United States, and finally,
Recommendation No. 6, the Commission must promote legislation to
provide adequate reimbursement under Medicare and Medicaid for
nursing services, including registered professional and
vocational nurses and attendants.

Nursing and attendant care are either poorly reimbursed
or not reimbursed at all in home and hospice programs, adult day
health centers, skilled nursing facilities or residential care
facilities. Attendant care around the clock is often necessary
as the patient’s mental and physical status deteriorate. Even
with attendants around the clock an all-call nurse may have to
make a home visit at 3 o’clock a.m., to assess an individual’s
status. This may seem like a minor task, but this nurse may
spend 2 or 3 hours assessing the patient, contacting the
physician for medication orders and allaying the patient’s and
family’s fears.

Such care is usually non-reimbursable. Although we
have developed a model to support such extensive care, most home
health and hospice programs are unwilling to accept the financial
risk of extended hour care. To reduce inpatient hospital costs,
it is essential to promote better reimbursement for care outside
the hospital setting. It is impossible to assign accurate costs
associated with the above recommendations. However, for each
recommendation, both the direct and the indirect financial impact
must be considered. With respect to the direct financial impact,
cash outlays will be required for all education and research
efforts. Both professional staff and technical support will be
required to implement training programs to educate legislators to
collaborate with various organizations and to identify
alternatives for care. Grants must be awarded to nursing
organizations for their education and research efforts and to
local health departments or to others knowledgeable about
services available around the country. With respect to the
indirect financial impact, savings would be substantial as more
appropriate nursing care is given resulting in fewer costs
associated with unnecessary procedures or placements.

The AIDS epidemic has challenged every facet of nursing
care. I hope that these recommendations will enable the
Commission to carry out their responsibilities to promote better
access to nursing care, to encourage appropriate care in the most
cost effective environment and to provide humane and
compassionate care to all individuals affected by this
devastating illness. Thank you.

DR. CONWAY-WELCH: Thank you very much. I would like
to introduce Ms. Helen Miramontes from the American Nurses
Association. Welcome.

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MS. MIRAMONTES: Good morning. I would like to thank
you on behalf of the 188,000 members of the ANA’s 53 constituent
state nurses associations for the opportunity to address this
Commission. You have asked us to provide recommendations from a
nursing perspective which will facilitate cost effective,
efficient delivery of integrated quality care to persons with
AIDS.

AIDS is a nursing management disease. Over the past 3
years, ANA has issued a number of policy statements on AIDS,
incorporating guidelines issued by the Centers for Disease
Control and the Surgeon General. In essence we believe that the
most effective tools for preventing the transmission of AIDS are
education and preventative health techniques. We oppose
discrimination against persons with AIDS or a positive HIV. We
support the availability of quality health care, the
confidentiality of that care and respect for the individual
affected, and we support increased funding for research and
educational efforts.

Therefore, our first recommendation is that nurses
incorporate accepted occupational safety and health standards
and guidelines into their nursing education and practice. We
believe that if nurses understand the disease and prevention
modes, they can realistically assess the risk and take
appropriate precautions. We have urged OSHA to address the
hazards of AIDS and hepatitis B, and ANA will participate in the
OSHA rule making on AIDS and hepatitis B this year.

Secondly, ANA recommends better coordination of
services. Fragmentation of services is a major problem, and
clients are deprived of care. Professional nurses who understand
pharmacology, community resources, the pathophysiology of AIDS,
attitude resolution and values clarification are qualified case
managers.

Our third recommendation is that appropriate funds must
be given to family planning, public health, substance abuse and
minority health programs so that they may be effective.

Lack of funding is the most common complaint.
Community outreach and education cannot be accommodated because
of lack of personnel and AIDS-related services are putting a
strain on traditional public health services. ANA’s fourth
recommendation is to designate specific funds for alternative
delivery systems for AIDS patients. Most persons with AIDS can
function outside of traditional hospital settings. However, they
will need non-institutional care. Providing acute care for AIDS
patients presents many challenges, also. Some facilities have
found it difficult to create designated units for AIDS patients.
Upstacles encountered are recruitment costs, and a major problem
is staffing. Also, there will be an increased demand for

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professional nursing care in non-acute health care settings.

Our fifth recommendation is to increase access to
long-term care. ANA suggests that surplus acute care beds be
converted to accommodate long-term care needs and facilities
which presently do not accept patients with AIDS will have to
modify such policies.

Where will we find nurses when we are in one of the
most serious nursing shortage crises? Canadian Nurse cites a
study completed at Vancouver General which costs out daily
nursing hours per AIDS patient at 9.8 hours, almost twice the
cnct of what was expected. Compare that to an 8.5 nursing hours

per hospice patient.

Additionally a New York hospital study showed that AIDS
patients require almost double the amount of nursing time as
those who do not have AIDS. HHS predicted a 40 percent
undersupply of nurses by 1990 before the estimates on the health
care demand of AIDS patients were reported. The geographic areas
with the highest shortage of nurses are, also, those with the
highest prevalence of AIDS. The growth in the number of AIDS

patients and their increased care needs will make the projected
undersupply greater than 40 percent.

ANA’s sixth recommendation is for increased funding of
nursing education. Innovative and traditional incentives to
attract intelligent, compassionate people will have to be
intensified. Scholarships, loan repayment and loan forgiveness
for students to pursue nursing in public health underserved
urban areas, hospice or long-term care should be enacted.

Another challenge to providing such care in retaining
nurses is the psychological well-being of the provider. Health
agencies are reporting that recruitment of nurses is hampered by
family resistance to nurses caring for AIDS patients. If we do
not address these issues, we will face further retention and
recruitment problems in nursing. Our seventh recommendation is
that funding continue for nursing research on AIDS at the Center
for Nursing Research.

Finally, we recommend that funds to provide education,
treatment, prevention, outreach and research on AIDS not be
surfeited from other public health programs. A significant
number of individuals who may be at risk for AIDS are considered
high risk in other health-related areas. Nurses are in a unique
position to offer leadership,, and ANA pledges to continue its
role in the community and the profession in promoting AIDS
prevention and education. We are pleased that nursing has been
represented on this Commission since its inception. Such
foresight will hopefully facilitate the development of a logical,
scientific and humane recommendation of a national public health

353

 

 
 

 

AIDS policy for the President. We hope state and local officials
will, also, recognize that nursing must be included in AIDS
public policy development and not just in the clinical setting.
Thank you.

DR. CONWAY-WELCH: Thank you very much. We would like
to introduce Dr. Jean Fox. Dr. Fox is a Galt scholar in the
State of Virginia, and she is on the faculty of the University of
Virginia School of Nursing.

DR. FOX: Thank you. I appreciate the opportunity to
present testimony on behalf of psychiatric mental health
nursing. I am here today to describe how psychiatric mental
health nurses can contribute to the quality of care for those at
risk, those being diagnosed and those being treated for AIDS and
their significant others.

There isn’t any question that the painful, wracking
debilitation associated with the terminal stages of AIDS are
harsh. Fqually as harsh are the psychosocial experiences so
common to AIDS victims and their significant others. The
intense aching and encompassing fear, the consuming uncertainty,
the total loss of stability, the absence of a sense of a place in
the world, the belittling of self, the isolation and the grief
for AIDS victims and significant others are all too familiar.

Also, too familiar are experiences with people who care
for them being unprepared to help meet those needs because of our
own guilt, our own fears, lack of knowledge and skills. Health
care workers are not all specialists in meeting these needs. In
fact, most have very little education in these aspects of care,
unless they pursue advanced training in psychiatric nursing,
psychiatry, psychology or social work. AIDS is far too complex an
issue to not provide these specialty inputs. All health care
workers can increase their knowledge and skill, if supported and
assisted by mental health specialists. This support and
assistance can lead to improved emotional and physical care for
AIDS victims and their significant others.

Psychiatric mental health nurses are specialists. They
are prepared to provide expert day-to-day support and care to
families for people at risk or for people experiencing
difficulties. Psychiatric mental health nurses focus their
attention on assessments and their interventions on individual’s
daily adjustments, their coping, their relationships, their
health status and their quality of life. Psychiatric mental
health nurses are educated to utilize information about the
patient’s pathophysiological, medical and emotional condition,
usual patterns of behavior and relationships and to evaluate how
these are interacting to affect the patient’s daily life.

Psychiatric mental health nurses are educated to assess

354

 

 
 

 

the stresses a patient is experiencing, to explore and plan and
assist the client in utilizing available resources to cope more
satisfactorily on a daily basis. These specialists are educated
as case managers with skills in crisis and other
esychothcrapeutic supportive interventions. A focus on least
restrictive, most normative, least invasive coordination of care
characterizes case management activities of psychiatric mental
health nurses. The cost effectiveness of this supportive
intervention is well documented. Many victims of AIDS and those
at risk have lived in excessively stressful socially stigmatized
conditions prior to diagnosis, and they are frequently alienated
from the mainstream of medical care. They require sensitive
non-invasive support in their effort to achieve a satisfactory
daily life. Alternatives to typical acute care are essential to
the well-being of these individuals. Supportive counseling and
care directed toward assisting the patient to cope on a daily
basis are essential for quality of health care and are required
at whatever stage of the illness the individual is experiencing.

Presently there are only about 50,000 psychiatric
mental health nurses practicing in the nation. Over 12,000 are
master’s prepared and about 600 hold doctoral degrees. There is
a serious shortage of psychiatric nurses, as serious as in all
nursing specialties. The question is what is it related to? In
psychiatric mental health nursing it appears to be tied directly
to a dramatic shutdown of funding for psychiatric nursing
education programs and students. In 1976, the National
Institute of Mental Health, the only federal source for
psychiatric nursing education support funded 140 programs in
psychiatric mental health nursing.

In 1986, only 20 were supported. The change in the
support for students was from about 1700 to 97 in the 10-year
period. Of the total National Institute of Mental Health
clinical training budget which relates to training for
psychologists, psychiatrists, social workers and nursing, nursing
received only 6 percent of the $20 million in 1986, In 1987,
there were no new clinical training funds approved by the
Administration, therefore, no new support for psychiatric nursing
education.

What is required for psychiatric nurses to be able to
respond to the very serious needs of AIDS victims and
significant others for supportive mental health nursing care?
The Administration needs to provide support for students
enrolled in psychiatric mental health nursing so that they can
learn the knowledge and skills essential to provide care for
this population. Incentives must be made available to encourage
psychiatric mental health nurses to develop with significant
others and clients alternatives in patient hospitalization.

Some mental health nurses are already very actively

355

 

 

 
 

 

working with AIDS support groups. This should be encouraged
during an initiative for proposals directed toward innovative
psychosocial collaborative group support for AIDS victims and
significant others.

In summary, new funds should be allocated to the
psychiatric nursing education branch of the National Institute
of Mental Health to support education, care and research
projects directed toward improving mental health nursing care
for AIDS victims and significant others.

Schools of nursing should be invited to submit
competitive proposals addressing undergraduate, graduate
continuing education for mental health nursing care for AIDS
victims. Traineeships should be available, but they should be
tied to payback for work with this population. We have used that
mechanism very successfully in training mental health
specialists, and we have any number of graduates of programs
working with populations that we have identified or targeted, for
instance, the chronically mentally ill, the geriatric patient.
Payback works.

We need to develop research or care demonstration
projects designed to increase our knowledge and skill base in
this field. Projects should be funded in geographical areas
where risk and incidence are high and applicants clearly
demonstrate the capacity to make a significant contribution to
the number of prepared psychiatric mental health nurses working
with AIDS victims and to the quality of care provided.

Projects should be funded adequately and for a
substantial period to allow for the greatest possible return for
the investment. Approximately 100,000 to 250,000 per project per
vear for 3 years would be a reasonable level and duration for
such projects.

 

Advisory panels of AIDS clients, care experts and
significant others of AIDS victims should be required for each
of these projects. Given our very specialized technologies
available in health care, we cannot forget the quality of the
day-to-day life of the AIDS victim and his significant others;
we must protect as much as possible the psychological resource
of a sense of coherence, the ability to see life as stable,
predictable, congruent, coherent.

Certainly this resource is savagely threatened by AIDS,
but it cannot be destroyed by the care and the caregivers
providing that care. We must work with clients and significant
others to promote the human spirit and self so important for
well-being. This is the task of psychiatric mental health
nursing.

356
 

 

DR. CONWAY-WELCH: Thank you very much, Dr. For. Dr.
Mary Naylor, Associate Dean and Director of Undergraduate
Studies, University of Pennsylvania School of Nursing Dr.
Naylor?

DR. NAYLOR: Good morning. I am very | ‘a% to have
this opportunity to present testimony to the Corniss:on today
related to the er: oF ue 3 with
AIDS. An acute wy .
country with far-teawiru., implrcusians ror tu. . -nis
nation. This situatiin .5 com, wunced by - . crease

in nursing school enrollments and a dramatic deciine in the
national pool of high school and college students ind cating an
interest in nursing.

These major changes in the current and future supply of
nurses are occurring at a time when the need for highlv

sophisticated caring nurses is more urgent than in . . her
=criod in this profession’s history. A major factor
contributing to the increased demand for clinically c potent

caring nurses today and for years to come is the HIV epidemic.
An adequate supply of nurses willing and able to dedicate
themselves to the special needs of AIDS victims is cx ..cal to
the development of an effective and affordable continuum of
services for this population.

A recent national study revealed that the © «.cquacy of
existing financial aid programs has contributcu &. j1...cantly to
the decline in nursing school enrollments. ‘The . “loving
recommendations are directed at enhancing thi. 3° wi = ability
to recruit and prepare qualified nurses for the c # of AIDS
patients and their families by strengthenin — tal aid

programs available to prospective students.

The establishment of federally and stat:e-supported work
study and work grant programs is the focus of my first
recommendation. A work study program would enable sti ents to
work during the summer and school years as nurse assistants in
hospitals, community centers or shelters that car> “.r ‘IDS
patients and their families. This program could prov:de tuition
support and at the same time enable students to develop
essential skills in the care of this special popuiation. A work
grant program would enable nursing students to devote more of
their time to study by receiving tuition support while attending
school. In return for tuition, students would agree to work for
a period of time after graduation ina setting providing care for
AIDS patients. This recommendation recognizes the unique nature
of the population choosing nursing as a career, older students,
often with major family responsibilities and limited accesses to
traditional financial aid options.

The second recommendation is to increase appropriations

357

 

 
 

 

in special projects in the division of nursing for demonstration
projects to develop and disseminate the following information:
Model curriculum plans for undergraduate and graduate nursing
pcroycams that are designed to provide students with a core of
essential knowledge and clinical skills in the care of patients
with immunosuppressive diseases; programs to prepare nursing
faculty to teach students, nursing aides and other support
personnel about the care of AIDS patients; programs to address
the concerns of prospective nursing students regarding the care
of AIDS patients and to inform these prospective students about
the knowledge and skills that nurses receive to protect
themselves and their own families.

These programs are directed at minimizing the impact
that the public’s fear of AIDS is having today on our ability to
recruit highly qualified students into nursing and other health
professions, and finally, multidisciplinary education programs
for the care of AIDS patients. These programs should recognize
the cost effective care of AIDS patients and their families is a
collaborative effort involving all members of the health team.

A third recommendation is to increase the authorization
to the nursing student loan program and to decrease the
restrictions currently associated with this progran.

The increased funds could be earmarked as a payback
option. Students who receive monies from this program could
elect to pay the loan back through traditional means or through
service to AIDS patients. Currently students can receive a
maximum of $10,000, $2500 per year for 4 years under this fund.
The National Student Loan Program has had no new monies added to
this revolving fund for the past several years.

It has been reauthorized to include only those in
exceptional financial need. To receive funds, student resources
must not exceed 50 percent of the costs of attending school.
Increased support for and restructuring of the nursing student
loan program could result in a major source of financial aid for
nursing students in need.

A fourth recommendation is to earmark Medicare
pass-through monies for some of the direct costs associated with
educating nursing students for the care of AIDS patients. These
monies could be used to support faculty salary and related costs
as well as to provide stipends for graduate nursing students who
are preparing for specialty roles in the care of AIDS patients.
Medicare funds should be made available only to those hospitals
who have a contractual relationship with schools of nursing and
agree to use these monies for nursing student education.

My final recommendation is to increase advanced nurse

358

 

 
 

 

training appropriations, special priority should be paid to
those advanced nurse training programs that prepare clinical
specialists and nurse practitioners for the care of AIDS
patients and their families.

Nurses have always provided skillful, compassionate
care to persons regardless of their age, sex, race, social class,
educational background, religion or medical diagnosis. Nurses
throughout this country are demonstrating daily their
willingness to continue this tradition in the face of
vuunsiderable stress.

Until a cure for this disease is found, persons with
AIDS will look to nurses to help them live out their lives with
dignity. A major national resource, nursing needs to be
supported in its efforts to meet the formidable challenges that
AIDS poses to this country today and in the future. Thank you.

DR. CONWAY-WELCH: Thank you, Dr. Naylor. I have lost
track of which way we are going. Ms. Pullen? Dr. Lilly? Ms.
Gebbie?

MS. GEBBIE: We have heard quite a bit about the need
for research funds, and generally when it is put to us it has
either been some problems with research on the biomedical side or
another large lump called behavior. Several of you referred to
the need for nursing research but have not been specific. Would
you please clarify one, whether you think that is coverable under
either of those other lumps, if there were enough money there; if
not, why and then some examples of the kinds of not research
about nurses but nursing research that is particularly needed
that is pertinent to the issues around HIV infection, addressed
to any of you?

MS. MIRAMONTES: I spoke about the need for funds for
nursing research, and what I was thinking about is not only the
educational program that was talked about in the earlier panel.

I am past president of the California Nurses Association, and I
am very familiar with "Train the Trainer" program. One question
I have been asked when I have been doing presentations on that,
is can we validate that the program training makes a difference I
heard that mentioned in the previous panel, too, and that is
where some of the research needs to be done.

I, also, was recently hired as a project director for a
skilled nursing facility caring for AIDS patients in Redwood
City, California, because we don’t have data that prove that, to
support the idea that subacute care costs less than hospital
care. What are the patient hours that we need? How can we get
this and so forth? So, research needs to be done on those
areas, also. We have talked about standards of care for AIDS
patients. I think what we need is education about nursing

359

 

 

 
 

 

diagnosis and how to provide that care and research needs to be
done in those areas, also.

DR. NAYLOR: I would like to add that a large part of
what needs to be done in terms of research has to do with how do
we change people’s behavior. We are talking about changing the
behavior of sexual practice of individuals, changing the
behavior of drug addicts, changing the behavior of very
different populations which we have not yet studied, and so
attention needs to be paid in terms of research support for how
do we change people’s behaviors and how effective are
interventions currently being used?

MS. MARTIN: I think another area of research that must
be considered has to do with how to properly support the nurses
and other staff who are caring for individuals with AIDS. As you
have heard in multiple testimony, the intensive care that is
acyusced aud the length of time as Helen Miramontes mentioned
that is required in the care of the person with AIDS is
insurmountable with any other disease. I think it is extremely
important to identify types of support mechanisms to research if
those mechanisms are effective and then to identify them for
other programs across the country so that they could be
implemented.

DR. FOX: I think that there are a lot of questions
about the care process itself and the focus on the patient’s
daily coping adjustment, adaptation and what caring really means
in that context. An example is what is the most useful,
appropriate and satisfying system that involves the significant
other of the AIDS victims themselves and the care provider. We
have a tendency to provide all of our magic bullets in our
specialized treatments without asking how does that really fit
the life circumstances of the individuals that we care for. So,
I think there are some different questions about care that might
not necessarily fit within those two categories.

MS. GEBBIE: May I ask, none of you answered my
question about the funding source; is this research that you
think is eligible and would be covered under that behavioral lump
that we have talked about, if it were just big enough or is there
a reason for setting it aside in some special way?

MS. MARTIN: I think if it could be identified as
nursing research within the behavioral funding that it would be
appropriate if there were adequate funding available. I don’t
particularly think there needs to be a new funding source.

MR. CREEDON: Are you talking about research or pilots?
It might be both. Are you talking about pilot programs?

MS. MARTIN: I think both. I think you were referring

360

 

 
 

Po

specifically to research, but I think pilot program development
is, also, essential in order to identify or to clarify research
methods. You certainly would have to have pilot projects to
carry those methods out.

DR. CONWAY-WELCH: Dr. Walsh?

DR. WALSH: I don’t think you have to have any concern
that your plea is going to get sympathetic consideration from
this group with Dr. Conway-Welch and Dr. Gebbie here and myself
having been married to one for 45 years. You have got three
votes for support already. The thing that concerns me has been
the lack, I mean the word the Administration has used very
loosely, but actually there has been a growing diminishing of
support at every level for nursing education, despite the fact
that you all have been eloquent in the past, spokesmen, before
the Congress and everywhere else to try to get an answer to this
problem.

I see AIDS as Dr. Naylor is using it as a wedge to
perhaps get increased funding, but my fear is if you tie your
appeal to AIDS alone so much that you might get a temporary
injection which when the hysteria over AIDS diminishes, you will
then promptly lose.

I feel it far more serious than that. Again, I am into
the fact that this has to be an integral part of the whole health
care problem, and while I know you have been discouraged with the
lack of response that your appeals may have been getting in the
last 10 years or more, perhaps it would be better if you would
unearth some of those old arguments, coupled with your new
arguments to give us some really positive suggestions because I
think, and my record certainly in the work I do has established
that nursing is such a vital part of the education programs in
which we believe that we could not exist without them, and the
nurse today has become such an integral part of the medical team
that in many instances I can even remember a nurse:‘on an
intensive care unit on board the Hope overruling Dr. White from
Boston on a xylocaine push in the early days of intensive care
activities, and I think if you could come up with suggestions for
us, not today but that you could combine into some really solid
recommendations, I know you will get a sympathetic audience with
this Commission because I don’t see how we can tackle the AIDS
problem or any other problem of long-term care without making the
nursing profession more attractive, without giving you more
education funds, without giving you more incentives, without
finding answers for how you can provide incentives to high school
and college students to come, into the nursing profession as a
superb career opportunity. You have got two examples sitting
right here of people who have done well and, also, yourselves.

We have got to find an answer to that, and you have got to do it
to us because we don’t know enough to do it. So, that is my

 

361

 

 
 

 

question. How do we do this, and where can we get it so that it
will fit into a recommendation to the AIDS Commission and yet
will cover more than AIDS because I want it to come back and be a
permanent part of it and, also, I noticed this, too, and you
might comment on this, please as the second part of the

question. In our own fund raising, in the private sector, we
find it extremely difficult to get support for nursing projects.

I have, for 30 years, been unable to understand this
pecause they are so vital to what we do; whether it is because
they don’t have enough sex appeal or what, I don’t know what it
is, but you might come up with some thoughts on that, too, to
appeal, to find out how we can get more private sector
involvement in nursing incentives.

DR. CONWAY-WELCH: Let me ask, before you respond, Dr.
Walsh, the Admiral needs to leave at 20 after, and he has a
potential suggestion that I think falls into this general area.
So, if we might be able to have him respond, and then if you
could incorporate that in terms of your response to Dr. Walsh?

CHAIRMAN WATKINS: Since the issue is at hand, I was
going to ask the question in a different way, but I will focus
right on this whole issue of the inventory of nurses in this
country to deal with the nation’s needs.

I have been impressed by the data coming across my
desk, and I am, of course, a novice in this area, to see the
incredible shortage we have, the decline in proclivity of young
women to come into the nursing profession, the need for nurses.

I just read a document that said that we need almost one-half
million between now and 1990. So, I see that we are running into
another one of these very, very dangerous sets of rocks and
shoals as we say in the Navy, in the future that we really have
to worry a great deal about in the nation, and so, I am impressed
with Dr. Naylor’s series of recommendations. They are right down
the line of certainly my own thinking, and I know the thinking of
many on the Commission. I was impressed by those, and I am sure
that many of you hear listening to that would nod in agreement,
would you not? Would you nod if you are generally in agreement
with Dr. Naylor?

What I think would be important to us; this is a very
unique Panel that we have here, all competent, highly
professional registered nurses who have been right in the middle
of this thing. It is going to be unusual to get a group like you
together again, and so, it is important for us to, for each of
you to get a copy, if you would of Dr. Naylor’ s recommendations.
They are very articulate and well laid out in this document, and
then it would be very helpful if within the next 2 weeks each of
you, with your organization, with the best pen you can put to
paper pick up on her recommendations, enhance them if you need

362

 

 
 

 

to, criticize them if you need to. Give us your recommendations
because want to do something along Dr. Walsh’s lines here of
impacting heavily on this very gutsy part of the health care
delivery issue on the subject of AIDS.

So, I think that we are at the threshold of perhaps
doing something that the nation should have already done but for
a variety of reasons has not. We have set environments up that
have not enhanced the profession to the extent you all feel it
should be for a variety of reasons, and certainly I have a
daughter who is in psychiatric mental health, got her advanced
degree and worked here at Lorton and in mental hospitals and so
forth. You will be very pleased, Dr. Fox, you indoctrinate
extremely well. I cannot have dinner with her. I cannot be with
her that she doesn’t absolutely pound me, and now that I am
Chairman of the AIDS Commission she has found a real tool to work
ner magic on me. So, I am very sympathetic with this issue, and
I think it is important if -- will you be willing to do that?
Take Dr. Naylor’s paper as the baseline document and come back to
the Chairman of the President’s Commission on AIDS because we are
going to make some recommendations about the nursing profession,
and we have got to put it right up front, and we want to do that
soon. We are going in with a care package that we think makes
sense to the President, by the end of February, and this has got
to be one of the kernels of that.

In coming in with your recommendations, I would only
ask that you do this because I was a little confused, and I don’t
think you tried to get it so definitive as to give us this
breakdown, but we need to see the breakdown in general terms
within the context of Dr. Naylor’s paper on how you would break
down the elements of that education process to those with
associate degrees, baccalaureate degrees and advanced degrees.

It would give us a better feel for what you are talking about,
and certainly that would be useful to us.

So, if you all would be willing to do that, I think you
will be making a great contribution, and please feel free,
cbviously, and I would like it to reflect in your letters to us,
the degree to which you feel the recommendations you are making
represent, let us say, the entire body of your particular skilled
area, nursing. If it is the American Nursing Association, that
is fine. If it is a specialty area, Dr. Fox, that is fine. If
it comes from a special standpoint of experience with AIDS, Ms.
Martin, that is fine. So, I think that those separate inputs
coming into us could be very powerful, and we certainly would, I
think everyone would respect the recommendations based on inputs
from this particular talented group.

The only other thing I would like to take advantage of
while Ms. Martin is here, I was not at the hospice at San
Francisco during the visit. I intend to get out there later on.

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We will have an entire hearing in San Francisco, and so, I will
be able to get out to see you, but I asked a question the other
day, and I think it was misunderstood, and maybe you are the
person to ask it to. Legislation was passed in late 1986,
allowing states to adopt Medicaid hospice benefit. Very few
states have adopted it, and I want to know why. If they did,
would it be a reasonable or an adequate way to reimburse for
hospice care of persons with AIDS, and so, if you could just
talk a little bit about that to clarify, I don’t think I got it
from the individual who was involved in hospice work here, and
it was probably because my question was not very well stated.

MS. MARTIN: I am very familiar with both the Medicaid
and the Medicare legislation for hospice care. As with Medicare
legislation, very few organizations first, before I talk about
states were willing or have been willing to adopt Medicare
hospice benefits because of a fear that the per diem
reimbursement rate would be inadequate to cover the multiple
disciplines that are required under Medicare reimbursement under
the Medicare hospice benefit reimbursement package.

For those organizations who have adopted the Medicare
reimbursement package for hospice care, we have found that in
Tact, the reimbursement rate is adequate to provide hospice
services under the per diem package rate. Only three or four
states around the country at this point, including California
have adopted the Medicaid legislation. I believe it is fora
number of reasons.

CHAIRMAN WATKINS: I am sorry, has California adopted
it or not?

MS. MARTIN: California has adopted it. California,
Florida, New York and I believe there is a fourth state; a
number of states, anyway, have adopted it. It is cumbersome
legislation because it sets up for the states a very costly
package of care that they are, again, afraid to adopt. They are
afraid that it will cost the individual state an enormous amount
of money to provide hospice services when, in fact, if they would
adopt that legislation, it would appropriately move patients out
of very costly settings like hospitals in the very terminal
stages of their illness to more appropriate settings like their
home or nursing homes or other extended care facility settings.

CHAIRMAN WATKINS: This is extremely important, I
think, as we move into alternate care settings in our
recommendations, and if you have experience, and I don’t know if
you have the linkages, personal linkages to the other states,
representatives who have the same kinds of skills and experience
you have in hospice work, do you?

MS. MARTIN:: Yes, I do.

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CHAIRMAN WATKINS: Would you do this for the
Commission? This is now a separate letter. The second letter is
to communicate with those states who have adopted it, give us the
benefit of your collaborative effort to take a hard look at this
thing and try to relate there and look at the cost/benefit offset
that is involved. I think so often we take one narrow, isolated
endeavor, and we say, "Look how much it is going to cost,"
without looking at what the total cost offset may well be, and
certainly we have been given figures where we can see different
costs per day for individuals when available, when that service
is available, whether it is home care or hospice or other, and I
think if you have that experience, then we would like to, I
think, endorse something like that as part of our continuity of
care concept, but any specifics you have from experience to date
to allay fears of others so that people will take advantage of
legislation because so often we hear from the legislators we have
already authorized and passed sufficient dollars; states have not
picked it up, and I am sure there are fears and reasons, either
budgetary or others why they have not, but I think it is
something that we want to know more about, and obviously those
states that have picked it up, I assume what you are telling me
is they have not found that the spectre of pricing them out of
business has really taken place?

MS. MARTIN: Right, that is exactly right.

CHAIRMAN WATKINS: I think it is important that we know
more about that. Is this something that you can do without a
very heavy burden on you within the next few weeks or am I asking
you co do something that is really very complicated?

MS. MARTIN: I believe that the National Hospice
Organization which is located right here in Arlington has been
very active nationally in trying to identify and help states who
are interested in adopting this legislation and, also, to
identify states as to why they are not interested. So, I can
contact them quite easily, and I am, also, well connected in the
hospice community outside of the NHO.

CHAIRMAN WATKINS: I think it would be a great
contribution to us, and it would clarify this dichotomy that we
are running into that we have already given you the dollars and
the states won’t use it, and we cannot allow that to sit on the
table unaddressed.

MS. MARTIN: Just as an aside, as progressive as
California has been in adopting this legislation, it has taken
over 2 years for it to get through all of the red tape at the
legislative level, and it still is not enacted. It will be
available, I believe, for funding in August of this year.

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MR. CREEDON: Admiral, I think a supplemental request
would be to have your advice as to how the federal program might
be changed to make it more acceptable and effective from the
state standpoint, including your own experience with the program
so far.

MS. MARTIN: I have actually been consulted with quite
frequently from the aids who are working on the legislation here
in Washington. So, I would be happy to give my opinion and,
also, to consult with NHO to provide you with the information you
need.

DR. CONWAY-WELCH: Dr. DeBack?

DR. DE BACK: I would like to comment on the Admiral’s
request and then get back to Dr. Walsh’s question. Admiral, we
from the National Commission on Nursing Implementation Project
will go even a step farther than you have asked us to go in
terms of Mary Naylor’s work, and that is --

CHAIRMAN WATKINS: I am not trying to confine you to
anything. We want to hear everything you want to tell us.

DR. DE BACK: Because our job is to implement some of
the key recommendations of the National Commission on Nursing and
Institute of Medicine studies from 1983, we are setting forth
very specific activities that can be done not only by
government, by individual organizations and by cooperative
groups of organizations to help to move these issues forward,
particularly in terms of reinstatement of monies for nursing
education and direct reimbursement for nursing services. So, we
will certainly see to it that you get that.

CHAIRMAN WATKINS: This will be very, very important,
and I know that because we have talked a lot about costs in many
of the hearings, and we don’t want to cloud care so much with
costs that we fail to do anything. So, we are interested in
custing celationships, and I think it would be anything you can
give us in that regard would be very, very helpful.

DR. DE BACK: We will be glad to do that. In going
back to Dr. Walsh’s comments. He said we had excellent examples
of nurses out there which indeed, we do and that nurses have been
liked across this country which indeed we have. We have enjoyed
an unusual positive relationship with the entire community.
People like nurses. They know that nurses do well. However,
that appreciation has never been translated into funds. It has
not been translated into support for nursing. It has not been
translated into funds for education. It has not been translated
into respect for their work and the work that they do, and while
I think that .is wonderful and we are glad people like us, the
point is that money needs to be directed to nursing education and

366

 

 
 

 

nursing service. That is why my first assumption is that new
money must be spent. I have been in this business too long. I
am not so naive to believe that we are going to take money from
medicine or from anybody else and put it into nursing. That it
is not going to work. New monies must be spent so that we have
the adequate nursing personnel for the on-the-line, day-to-day
care that AIDS patients and others, Alzheimer’s, other long-term
care people.

CHAIRMAN WATKINS: We are going to, of course, have to
come to grips eventually with it by the 24th of June, with
priorities in our budget recommendation. This is one of the
tasks within our charter from the President, and from my personal
point of view, and I cannot speak for the other Commissioners,
but I can assure you that it is going to be very, very high on my
agenda, among the priorities. I don’t believe we can address
this issue without addressing the broader issue of the situation
regarding nurses in the country.

I think they are absolutely essential to the eventual
resolution of the dilemmas that face us on this particular
disease as well as everything else we are doing in health care
delivery. So, I think here is an opportunity now, and again,
taking a leaf out of Dr. Walsh’s book, AIDS may well be one of
the most positive catalysts for change in this country on health
care delivery we have ever seen, and if we let the opportunity
slip by, when is the next one going to come, and what happens in
the interim period as we face 10 to 20 thousand pediatric cases
of AIDS by 1991, projected by the Infant Mortality Commission and
the Congress and so forth.

We simply have to get our act together, and we haven’t
done it in an integrated way. We have to do that, and I think we
can do both. I don’t think is it what do you want to do, fix the
AIDS case or fix the other issue. I don’t believe we ought to
get in that argument. I believe they both get fixed, and I
believe is we really take this AIDS issue, and we bring it to
ground and we look at the obstacles to that, we find that those
are the same obstacles you all face in all other areas. So, we
don’t need to say, "Either/or," we can say, “AIDS will lead us to
a better health care delivery system in this nation across the
board if we do these things right." If we get the alternate care
settings, if we get the cost effectiveness down, we don’t have to
be so shocked all the time about up front costs. There is an
auoLcLization factor in this, too, and I have been in the budget
business long enough that if you can present amortization on
investment over time, you can get into business. It is the
business approach to it that makes some sense, and I think too
often we take pieces of these problems and say, "That is going to
cost you that much money," without looking at what we have just
done to set up a mechanism for alternate care settings that may
be significantly cheaper than what we are doing. So, we are

367

 

 
 

 

moving money around in my opinion far more than we are in doing
it. I am not saying that you don’t need up-front new monies
because I think that obviously some of that has to be done. The
Congress just doubled the budget for up-front new monies. How
that is going to be expended most effectively, I don’t know.
That is one of the things we can influence, and certainly nursing
is aoing to be right up there. So, I wanted you to get some feel
for I think the concerns that I think most of us share on the
Commission about this issue and I am delighted that our leader
here, being very much involved in nursing padded this Panel with
such competence today to get our attention. I have to leave.
Thanks very much.
1

DR. CONWAY-WELCH: Thank you. I would like to return
to Dr. Walsh’s question about the issue of the focus on AIDS
vis-a-vis a broader focus as we go forward in terms of
recommendations. Did I capture that?

DR. WALSH: Yes, we got four votes, too.

MS. MIRAMONTES: I am glad that you talked about that,
Dr. Walsh because ANA has for a long time been concerned about
the nursing shortage and we have gone through the cycles of the
nursing shortage, and we have looked at what is our
responsibility in encouraging more students to go into nursing
and so forth.

I think that our staff sent you a packet about some of
our releases on the nursing shortage. My staff person just
handed me, also, a paper that the HHS has just developed a new
Commission on Nursing to address the problem Health and Human
Services and also ANA just today have released a PSA, a public
service announcement, with Miss America who is a nurse, and it
is being released to 900 TV stations. Now, I know these are
drops in the bucket, but it is a beginning, and I think that all
of us need to be seriously concerned about this nursing
shortage. I will tell you that one of my personal concerns is I
have heard legislators in California link the nursing shortage to
the AIDS epidemic, and this is very, very dangerous. AIDS has
not caused the nursing shortage. I want to say that again and
again, but it is going to be exacerbated because of AIDS, and I
think that my last sentence in my testimony says it for me. It
is that nurses need to be involved at the policy levels, not just
at the bedside. We, as nurses and others involved in policy
decisions often think of ourselves as at the clinical focus of
the nurse and the individual patient, and where we need to be is
in those policy areas where policy is developed and direction is
given as far as finance, as far as protocols and so forth. This
is where it is an uphill battle for nurses, and I think all of us
on this table can tell you that. It is an uphill battle to be
involved, to get ourselves put on boards and on commissions and
ov fucthn. What we are beginning to see is that most of them on

368

 

 
 

 

legislative boards and so forth will have a token nurse now, and
fortunately, we have got two on this Commission. That is
wonderful.

DR. WALSH: You see the way she shuts me up, she is no
token nurse, but I think you are absolutely right, and I think
that you see it is both your strength and weakness. You know,
the idea being that you are unquestionably the closest to the
patient. Your importance to the patient is far more important
than it was 40 years ago or 30 years ago or 20 years ago, and
that, as I say is your strength and your weakness because
everybody says, "That is what she does best. Leave her there,"
and it is a shame because I agree with you 100 percent that you
should be at policy levels, particularly now.

I don’t care whether it is AIDS, aging or what, the
most important member of the health team today is no longer the
physician. It is the nurse. With the complications coming, the
whole attitude of health care and health care delivery is more
and more falling into your lap, and the doctor is actually
retreating from care, other than to manage it, I suppose.

MS. MIRAMONTES: May I quote you?

DR. WALSH: You may quote me. I have said this to
medical audiences as well, believe me. We have got to find an
answer, and I think this is a great wedge.

DR. CONWAY-WELCH: I think so, too. Mr. Creedon?

MR. CREEDON: I would like to address this to Dr.
DeBack, but the others may, also, want to comment. In your
memorandum and in your testimony you said that AIDS patients need
support and care which is different from the diagnosis,
treatment, cure model that is in place, and then your
recommendation No. 1 is to develop a standardized system of care
management in which professional nurses manage the care and
services of diagnosed AIDS patients. I think that is a very
interesting recommendation, and I wonder how you envision it in
terms of several things, A, the setting. If the patient, at
times is in the hospital, at times is out of the hospital, at
times is in a chronic care facility, a hospice or whatever, does
the same nurse manage the care throughout the process? We had
@iscussions yesterday with Dr. Bartley from John Hopkins, and he
said that he felt that there should perhaps be a capitation
approach to financing an AIDS case so that some one institution
would handle the case from the beginning until the patient dies,
and so, supplementing really what the Admiral said is that what
we are looking at here may be an opportunity to make some
significant changes in the way health care is delivered and has
been traditionally delivered. It seems to me that your
recommendation No. 1 is along those lines, and one of the

369

 

 
 

 

questions is how would the nurse be compensated, and you could
look at Medicaid, for example. Would she be compensated on an
hourly basis, on a capitation basis; how would she be compensated
for advice and counsel given while the patient is at home or for
a home visit? In other words, there are a lot of issues that
come up that are inherent in this type of recommendation, and yet
I instinctively feel it is a good recommendation, and somebody
should be in charge of the case from day 1 and follow it. Do you
know what I mean?

DR. DE BACK: Yes, indeed. First of all, let me say
that the concept of; case management is exactly as you have
defined it, that is from the onset of the illness a nurse case
manager is responsible for that case wherever that person is. At
times that may mean institutional care at one place or another,
and at times it may mean at home with support and so on.

MR. CREEDON: What would be the setting? I mean would
a nurse now have an office like a doctor where people, patients
would come to her? I mean traditionally you think of the nurse
as being in the hospital and being at the bedside. This would
seem to contemplate a different type of setting, a different
type of arrangement with respect to the nurse’s function, you
know, day to day.

DR. DE BACK: Yes, first of all right now, only 68
percent of the nurses are working in hospitals. But the care
mManager-nurse could be in a number of different places and could
be supported by a number of different institutions. The
community nurse organization concept is one in which there would
be a CNO in the community where nurses would reside and those
nurses would take on a group of patients, perhaps on a capitation
basis and manage their care.

MR. CREEDON: Are there pilots like that now?

DR. DE BACK: In the new legislation there will be a
minimum of four. So, I guess that usually means there will be
four.

DR. CONWAY-WELCH: Mary?

MS. MARTIN: In California there is, in fact, a case
management pilot project now in effect. There are, I believe,
five centers around California who have been funded to provide a
case management system, and within those five projects, they
have each been asked to develop the case management system they
thought was most appropriate. In San Francisco we have a nursing
case management system with a nurse who actually is a case
manager and follows the case throughout the whole length of the

*
@iagnoses.

370

 

 
 

 

Now, it is a brand new project. It has only been in
effect for 1 year. So, we don’t know really How well it will
work, but at this particular point it has been working quite
well. The other thing I would like to comment on is that in
terms of reimbursement of this type of service, if we looked at
the Medicare hospice benefit legislation and the Medicaid hospice
benefit legislation, a payment basis, either a capitation for
diagnosis as you will probably hear a little bit later or pre
diem capitation rate or a per diem payment rate certainly is one
way to consider reimbursement for those services, where for
example, under Medicare they reimburse at $80 per day, it is
regionally decided, but in California it is $80 per day for all
hospice services that are provided at home. That includes every
discipline or every service that would be required by that
individual.

MR. CREEDON: Is there any sense of how many patients a
nurse could handle on this type of approach?

MS. MARTIN: Again, talking about one model in San
Francisco, we have thought that around 15 patients per nurse
would be an adequate capacity if they were truly following them
from the start of care and, also, identifying the amount of
service that that individual would need. If the person is
involved more on the periphery and not involved daily in the
care of that patient, then I believe the number was 45 patients.
So, it is a relatively small number.

MR. CREEDON: We are talking about 270,000 cases by
1991 or whatever the time is, and if you are talking about this
type of approach, you really need a very significant increase in
the number of nurses.

MS. MARTIN: I would recommend to the Commission that
you might examine the California model, the project that is
actually implemented at this particular time in those five or so
sites.

MR. CREEDON: Can we get some information? Who could
provide that?

MS. MARTIN: I can contact the project director and
identify who would be appropriate.

MR. CREEDON: Would you think it would be desirable to
stimulate some additional models elsewhere?

MS. MARTIN: Yes.

MS. GEBBIE: In light of what we heard yesterday from
at least one witness in which they talked about a social work
model of one provider to 160 patients in case management, it is

371

 

 
 

very important that our staff work with these submitters so that
we know we are comparing apples and apples or we are going to be
very lost in the comparison.

DR. CONWAY-WELCH: There is another social work model
of one and 35, too.

MS. MARTIN: The social work case model has actually
been implemented around the United States for years, and it might
be the most appropriate model to look at. I don’t really know if
it is, but it is certainly an appropriate model that has worked
in the mental health system.

MR. CREEDON: What is the average compensation of a
nurse today?

MR. MARTIN: Average hourly rate or salary?

MR. CREEDON: However you would, if you were trying to
attract somebody, what would you tell them?

DR. NAYLOR: It varies considerably around the country.
It varies depending on site, urban setting versus rural setting,
etc. The last report, I think, of the National League for
Nursing, had an average annual compensation of about 21-some
thousand dollars, and --

MR. CREEDON: Less than a garbageman.

DR. NAYLOR: Always. The issue is even more
Significant when you consider the kinds of preparation and level
of skills needed to care for selected populations and the fact
that there is only about a $6000 differential between starting
Salary and salary at peak in career. The compression that exists
right now is maybe a major issue that needs to be addressed in
terms of economic restructuring to recruit.

MR. CREEDON: I was just making this point for you,
Madam Chairman.

DR. CONWAY-WELCH: Thank you, Mr. Creedon, and you did
it eloquently. I think Ms. Gebbie had a question, and I just
waited to add a comment in terms of the CNO legislation that
passed in December. That is an unknown animal right now in
terms of how it can affect nursing, but it seems to have
possibilities, and I would like to donate Chris Grady who is on
the staff and is a nurse to kind of help you all organize some
responses and perhaps some information on the CNO, also, would
be helpful to incorporate. Ms. Gebbie?

MS. GEBBIE: I would like to shift gears and just ask
this Panel questions comparable to those that we have asked

372

 

 

 
 

representatives of a couple of the other professions that have
been in front of us with regard to the issue of the ethical duty
to care and what experience we are having, if any, with nurses
not caring. I have certainly heard anecdotally of some of those
instances, the stand that professional organizations are taking
on that, and then secondly, the professional responsibility to
deal with issues of prejudice and homophobia.

Again, I think at least some anecdotal information that
nursing is a profession because of stereotypes about nurses of
both sexes may make it hard, at least as hard as for other
professions to even educate properly in this area, and I would
appreciate any comments for the record or follow-up that you
could give us on those two areas.

MS. MIRAMONTES: I would say that the ANA code of
ethics put out a statement last November, November 1986, that
actually addressed specifically infectious disease and AIDS, and
it was that unless the health care workers was at great danger,
at high risk, then they were obliged to care under the code of
ethics. Unfortunately, the membership in ANA is 200,000, and you
have almost 2 million nurses in this country, so that not all
nurses, I don’t think, subscribe to the code of ethics or see it
as the guiding light for their practice. That is what I would
like to see that the code of ethics is used as the guiding light
for practice.

Individually in California I have seen and talked to
nurses who called me about providing care, and questioned the
professional association’s responsibility; is it to the nurse
and to the patient. So, this issue does come up. We have not
had any complaints of nurses, at least in California, among our
members, refusing to give care. There has been talk about, for
instance, mandatory testing and those issues rather than
refusing to give care, and those are the kinds of questions I
have received.

DR. CONWAY-WELCH: Are there any other questions from
the Commissioners? I would like to ask one question in reference
to the Admiral’s statement on the different levels of nursing
education and the practice expectations that we ‘need to hear from
you go with that, and I am wondering if any of you would comment
on the concerns or frustrations or quality of care issues that
accompany the variety of the various levels of nurses working in
more isolated, less acute care settings where there are fewer
resources available and less opportunity for peer input or
supervision?

MS. MARTIN: I think it is always frustrating to deal
with the multiple levels of nursing. I think that all of us have
experienced that frustration, particularly in the home care and
hospice setting. I think it is essential, however, that we

373

 

 
 

 

utilize individuals who are not professional nurses, who are not
registered nurses but who in fact, are homemakers and home health
aids. They are the backbone of the care that we provide in our
own program and are the people who really do provide the
day-to-day hands-on care. I think the cost of registered
professional nurses is exorbitant today and probably will only
get more costly in the future, and it will be impossible to find
nurses who will, given the nursing shortage, who will provide the
day-to-day hands-on care. Not only that, I think that it is
unnecessary to use individuals who are highly trained to provide
some of the day-to-day hands-on care that is required at the home
care level, at least at the home care level. Individuals in the
home, however, who are homemakers and home health aids must have
adequate supervision by professional nurses. So, I think
although it is frustrating at times to have inadequate support,
we have to look at the: various levels of providers of nursing
care and place them appropriately in the health care system.

DR. NAYLOR: I would just like to add that if AIDS is
going to provide nursing with any kind of leverage as it relates
to recruiting qualified people into the profession, it is, also,
going to provide us with a really tremendous understanding of
what nurses do and the level of preparation and the level of
knowledge and skills that they are going to need to have to care
for incredibly complex health care needs of individuals and
groups of individuals, and certainly I hope that we pay a lot of
attention and that maybe this Commission would begin to address
the need for us to finally acknowledge that minimally we ought to
be talking about baccalaureate education for the preparation of
individuals to care for patients and certainly the need for
strong advanced preparation, master’s and doctoral degrees to
address some of the educational and research needs of this
population.

DR. WALSH: Again, doesn’t that tie in with what you
were talking about?

MS. MIRAMONTES: Right.

DR. WALSH: Of getting you into executive and policy
levels because so much, and I am sure you have seen it, Colleen,
depends upon the nature, both of the institution or the
organization and who is running it because I think we have all
been exposed to superb bedside care by LPN’s and so on provided
they have proper supervision, proper direction and respect that
nurse executive whom they are working for, and I agree that
without them we could never solve the problem, but I think this
is something that is still lacking. We have to define the point
that you are making of when we go in and say, "We need funding
for more nurses of these advanced levels that you are talking
about," that this is why we need them, that we, one of the
reasons we need them is that they have to be executives and

374

 

 
 

 

administrators and everything else as well as nurses in order to
take care of the rest of the health care team that they are going
to manage. You have to get training in management now in nursing
schools.

DR. FOX: I think one comment that I would like to make
is that nursing really does focus on the day-to-day care of
people.

DR. WALSH: Sure it does.

DR. FOX: And the thing which we-organize and
coordinate best is that day-to-day care, and we are not MD’s;
neither are LPN’s registered nurses, nor are home health aids
junior nurses, and so nursing brings essentially the very
specialized psycholosocial and nursing care perspective to bear
on the patient’s daily adaptation and adjustment, and that is
what we do best.

DR. WALSH: Exactly.

DR. DE BACK: That is a critical point as, indeed, are
the comments by Ms. Martin. We need all the health care workers
that we have, but at the same time, we need to clarify the
nursing education system and straighten it out a bit so that as
people graduate from different programs, they are rewarded in the
care system. On the basis of their educational experience
background. In this way we utilize people to the highest level
of their ability and reward them for what they know and what they
are able to do.

DR. CONWAY-WELCH: Thank you very much. We appreciate
the panelists’ time and energy and attention. We will reconvene
at one-thirty.

(Thereupon, at 12:45 p.m., a recess was taken until
1:30 p.m., the same day.)

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AFTERNOON SESSION

DR. CONWAY-WELCH: I would like to reconvene this
meeting of the President’s Commission on the HIV Epidemic,
looking at care issues. Our interest this afternoon is in
identifying some of the cost issues that are associated with care
and to provide some preliminary information and suggestions to
the hearing on finance of AIDS that will be held later on this
spring. I would like to take this opportunity to welcome Mr.
John Thompson from the Yale University School of Medicine. He,
along with his colleague, whom I will introduce separately, have
been asked to set the stage for us this afternoon in looking at
the issue of cost as an obstacle to care, and after each of their
presentations, there will be questions and answers from the
Commissioners. Mr. Thompson.

MR. THOMPSON: Thank you very much.

DR. CONWAY-WELCH: If you could speak directly into the
microphone, we seem to have problems hearing.

MR. THOMPSON: All right. The previous sessions of
this hearing have been devoted to the various aspects of the care
requirements of persons with AIDS. One might ask why, on the
last day of hearings was it decided to deal with costs and other
financial implications of such care.

The answer to this question is fairly obvious. Various
panels have identified very clearly that the care of persons with
AIDS is a complex, multi-faceted and multi-disciplinary problem
in that it involves almost every discipline of the healing
professions and every type of institutional and programmatic
setting in health care.

As if this were not enough, it is obvious that the
families of persons with AIDS and some members of the communities
in which they live must also be involved in an all-out effort to
supply high quality care under anything but optimal conditions.
It is not surprising then that the recommendation contained in
the Institute of Medicine’s "Confronting AIDS" comes up with a
recommendation that says "based on the experience today, the
Committee believes that if the care of these persons with AIDS is
to be both comprehensive and cost effective it must be conducted
aS much as possible in the community with hospitalization only
when necessary."

The Rand note, "The Cost of Treating AIDS Under
Medicaid" of May 1987, further states that the so-called "case
management model" with the goal of minimizing hospitalization
while stressing outpatient and home care is probably the best way
of organizing such care. We will hear more about that from Ms.
Luby.

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The main purpose of this testimony is, however, not to
examine the cost of the treatment of AIDS (there are precious
fou ctudies about it) but to examine the financial implications
of such treatment and to determine whether or not they are likely
to present barriers to the kind of care that is required. In
order to answer that question, we must first determine, who is
likely to be responsible for the financing of care to persons
with AIDS. The answer to that question is not a simple one since
it depends upon the state a person with AIDS lives in, his
previous work history, and the various types of support networks
available to hin.

After factoring in all those differences, however,
there is one point that is clear, and that is the multiple levels
of government will have to assume a larger and larger
responsibility for the financing of the care of persons with
AIDS. What is difficult to tease out with the present data is
what level of government is likely to assume the leadership role
and upon what basis, and with what types of accountability is
that governmental unit going to reimburse providers of care.

According to some national estimates of AIDS inpatient
hospital costs, private insurance has covered approximately 17
percent of the bill for 1985. It is generally agreed that
Medicaid will represent the primary source of public, third party
coverage for the treatment of persons with AIDS. William Roper,
the head of HCFA, stated in a 1987 conference that Medicaid
currently covers approximately 40 percent of the cost of AIDS
treatment. Variation on this percentage across states is
considerable. In New York, the percent of patients or persons.
with AIDS is 69 percent. In Massachusetts, it is 27 percent. In
Ohio, it is 35 percent. In my state, Connecticut, 39 percent,
and in Louisiana it is two percent.

Now, the very difference in these numbers, of course,
makes one pause. It is generally agreed then that the reason
Medicaid will represent the primary source of public coverage is
really due to a change in the epidemiology of the disease as more
and more of the patients are reported with drug problems. Ivy Jo
Bufford, for example, the President of New York City’s Health and
Hospitals Corporation, stated in testimony that 65 percent of
persons with AIDS will be Medicaid recipients in her hospital.

A more recent study of public and teaching hospitals
reports that approximately 53 percent of the care for persons
with AIDS was paid by Medicaid, two percent by Medicare, 22
percent by self-pay, and 19 percent by private insurance, and
tnree percent of the care was provided to prisoners under various
financial arrangements.

377

 

 

 
 

 

Now, one must be very wary of the so-called "self-pay
or other," category because often this is a euphemism for the
fact that nobody pays. In other words, this is often a person
who does not have private insurance, is not eligible for
Medicaid, and therefore this bill becomes a part of the charity
contribution of the hospital or simply a reflection of bad
debts.

It is obvious then that we must turn our attention to
Medicaid, assess its characteristics and try to determine what,
if any barriers might exist if we depend upon this source of
funding for most of the care of persons with AIDS. The Medicaid
program can be characterized as one, state based, with
approximately 50 percent of the money coming from the Federal
Government and 50 percent from the state; two, quite variable
depending upon the state; three, exhibiting a pattern of
reimbursement where even in the liberal states, the program pays
less than the cost of the care; and, four, depending upon the
state, Medicaid funds are supplemented or not supplemented with
local welfare funds.

Let us briefly examine these characteristics to see
what possible effect they might have on the financing of the care
of persons with AIDS. An article in a report by the Public
Citizens Health Research Group appeared in the December 29 issue
of the Washington Post Journal on Health. There it was pointed
out that though high hopes were held for Medicaid when it started
in 1965, as of this date, Dr. George Silver, Professor Emeritus
of Public Health at Yale University maintains that "the promise
of equal access and equitable provision of medical care for the
poor of this country continues to be denied."

I was interested in listening to the problems of
dentists and physicians, whether or not they wish to treat AIDS.
A bigger problem is that many providers refuse to see poor people
in their offices whether they have AIDS or not. That is a
problem we are going to have to face in financing through
Medicaid. Although the Federal Government sets up minimal
standards for the operation of Medicaid programs, these standards
can be met in a variety of ways by the states.

For example, total Medicare spending, which includes
the federal contribution, ranges from $400 a year for each poor
person in Mississippi, while in New York, it amounts to $3,200,
eight times as much. These differences in cost reflect
differences in health services covered and differences in
standards of eligibility for that coverage. Even more
importantly, Medicaid programs in various states have
historically paid less than cost to hospitals for the care of
patients. Estimates on losses per patient day are rare but the
study referred to above on the cost of public and teaching
hospitals found that in those states with liberal Medicaid

378

 

 
 

 

programs, the costs were $12,960 per hospital admission for
persons with AIDS, while the cost was $10,013 for the same
service in states with restrictive Medicaid programs.
Reimbursement was $2,340 less than cost in liberal states, and
$4,828 less than cost in the other group of states.

The problem is that in the past, Medicaid has treated a
very restricted and non-complex case load in hospitals. Most of
the Medicaid patients fall into the category of Aid to Dependent
Children or Aid to Families of Dependent Children. Consequently,
its case mix is primarily concerned with obstetrics, disease of
childhood, and diseases of women, primarily: gynecology. The
other part of the Medicaid expenditures is to nursing homes for
the care of the aging. This kind of a caseload is a far cry from
that of a complicated, multi-disciplinary, multi-level caseload
that AIDS patients present. Further, Medicaid’s historical
caseload are cases where economies of scale make the marginal
enste more important than the average costs so the hospitals are
not hurt quite so much. This is not true in the treatment of
AIDS.

There are, in addition, 37 states who have general
assistance programs which can fill in the gaps for Medicaid and
sometimes substitute for it. These programs are administered by
states or states and counties and towns and are known in some
states as general relief. There services and eligibility vary
widely as do their relationships with Medicaid.

It is for all the above reasons then, the lack of
uniformity among states and consequent lack of equity in
availability of care, the serious underfunding, the lack of plans
and policies for the treatment of persons with AIDS, the absence
of accurate financial data, that it is recommended that the U.S.
Department of Health and Human Services reevaluate the Medicaid
program and its role in payment of care for persons with AIDS,
addressing the problem of uniform quality standards of care,
equity in coverage and eligibility, and the financing of that
care. There are some questions whether or not the Medicaid
program will be so engulfed by the requirements of the care of
the persons with AIDS that many states might go bankrupt with
increased levels of financing.

The only saving feature in this picture is the fact
that most of the liberal Medicaid programs are in those states
with high incidence of AIDS, such as New York, California,
Massachusetts, Connecticut and New Jersey. In conclusion, one
might say that the very source of the payments may militate
against the accessibility to care on the part of persons with
AIDS. One should make it very plain that there is no evidence
other than in anecdotes, that hospitals are refusing to treat
high loss patients, either in Medicare or in Medicaid. The
highly-publicized bankruptcy of the AMI Hospital in Texas, the

379

 

 

 

 
 

 

concerns that in some states, hospital losses are considerable
and they may be to those very states where public hospitals are
mot available, makes one very worried about the impact of the
financing and care of persons with AIDS and the viability of the
existing Medicaid program.

The last concern one must pay attention to is the one
of the complexity of care. I cannot speak for other states. I
can only speak of mine, but at the last count, there were nine
agencies in the state of Connecticut who were officially
concerned with some aspect in the treatment or care of the AIDS
patient. The Department Health Services, the Department of
Income Maintenance, the Department of Children’s and Youth
Services, the Department of Mental Health, the Department of
Human Resources, the Commission on Long Term Care, the Commission
on Alcohol and Drug Abuse, the Department of Insurance, and the
Commission on Hospitals and Health Care. Each one of these
agencies gathers its own information on various aspects on the
identification, treatment, cost and/or payment of the care of
persons with AIDS. In most instances, these information systems
are incompatible one with the other so it is impossible for any
single agency to gain enough information to carry out its
activities, project anticipated expenses, and estimate the
overall effect of this catastrophic disease on the total health
eervices of the state.

Interagency monitoring systems must be developed to
trace the care and the financing of AIDS patients while
protecting the patients’ anonymity. Further, these information
systems much contain three pieces of data: one, basic
epidemiologic information; two, clinical progress of the
patient’s treatment; and, three, the finances and cost of that
care. Unless information systems are developed, no planning for
care can be carried out, no monitoring of treatment can be
mounted, and the person with AIDS can fall through the cracks of
the existing medical care delivery systen.

These interagency information systems closely resemble
cancer registries. We have seen the success of the cancer
registry in tracing the epidemiology and evaluating the treatment
of patients with cancer. The one thing these cancer registries
do not contain is financial information. If we had such a
registry for AIDS patients, then we could really make a
contribution to the planning, and financing of care for persons
with AIDS. Thank you very much.

DR. CONWAY-WELCH: Thank you very much, Mr. Thompson.
DR. CONWAY-WELCH: I would like to introduce Dianne

Luby, Operations Manager, Medical Case Management for Equicor,
Equitable Hospital Corporation of America. Ms. Luby.

380

 

 

 
 

ae

MS. LUBY: Thank you, Dr. Conway-Welch, and members of
the Committee. Medical case management is a cost containment
product that is intended to produce significant savings for our
clients who are employers on their catastrophic illness and
injury claims without compromising the quality of care.

The group insurance industry has been undergoing
dramatic changes in recent years. Traditional insurance is based
on the concept of evaluating and sharing risk. Group insurance
premiums are based on assigning a probability factor to the
possibility of illness or injury. We predict future utilization
by examining past experience. The risk is shared by large
numbers of people in a pool.

Due to the increasing cost of group insurance, more
and more employers have chosen to become self-insured. The
concept is the same, however, the risk is theirs and it is spread
over only the employees in their own group. The group does not
pay a premium, but rather they pay the actual cost of their own
claims plus a fee to an insurance company to administer these
claims.

It is highly speculative to predict AIDS cost because
on AIDS we have little past experience, no prior utilization and
therefore no way to scientifically predict future costs.

As an insurance company, the solution to increased
costs is to increase premiums. We raise the premium based on
experience and then pass that cost along to our clients. This
has caused more and more employers to choose self insurance.

This situation may cause people with AIDS to experience
increasing barriers to care. More and more employers are
choosing not to, or they are investigating not to, cover AIDS as
a part of their health care benefits insurance plan. If a group
is self-insured, and is attempting to write exclusions into its
policy to protect against paying for AIDS treatment, it is doing
so because of fear of the cost of AIDS. Small employers are
particularly vulnerable and fear bankruptcy of their insurance
plan if they cannot protect themselves from this AIDS epidemic.

 

Equicor’s solution has been to try to find an answer to
control costs for our clients and not to avoid them in this
manner. We have added AIDS to the list of illnesses and injuries
we cover under the medical case management program. Under our
program, each case is viewed as a unique situation with no
standard right or wrong approach.

For purposes of illustration, I have attached a
summarized version of a fairly typical case report from our
program. Our clients have purchased this service because they
view it as an added employee benefit in the time of an emergency

381

 

 

 
 

 

illness or injury, and because they feel that costs can be
contained if these types of cases have medical logic applied to
their management.

To quickly summarize this case, and, in fact, the
majority of our AIDS cases, is to say that standard health care
coverage is not the most logical in the treatment of AIDS. On
this diagnosis, cost is a factor because what is normally
reimbursed is not what is most prudent. Collectively then, the
person with AIDS, the insurer and the employer lose out.

The stages of deterioration in AIDS and preferred
methods of treatment at each level have been well documented and
our program subscribes to these. By attempting to maintain a
person with AIDS in their home, we reimburse for a continuum of
services: homemaker activities, attendant care, skilled nursing
ana associated therapies. We make benefit exceptions and we fund
for controlled approval items if we can manage symptoms and
prevent hospitalizations.

At the conclusion of each case we handle, we provide a
cost benefit analysis, documenting what the potential costs would
have been, utilizing their standard benefit plan and what the
actual costs were under our case management program. (On the
case study there is an example of one of those cost benefit
analyses).

Since 1985, 237 AIDS cases have been referred to us.
The number of referrals increased 305 percent from 1986 to 1987.
Claim dollar expenditures with medical case management have
ranged from $1,000 to $133,000. For cases which we have managed
and closed, our average claims cost per case is $22,110. This
number reflects experience only after we have picked up the case.
Claims prior to receiving the referrals are not included. The
average cost of claims without our involvement is estimated at
$34,278.

As the number of our cases has increased, we have
learned valuable management lessons. We maintain an extensive
resource system of providers who we have had success with, and
whose costs are competitive. We are negotiating discount
contracts with them for future services.

Our number one recommendation is for early involvement
using a case management approach. Case managers should be given
the authority to fund for alternative care to inpatient
hospitalization when it can be cost justified. Most importantly,
education must be carried out to show employers that AIDS cases
can be handled at reduced costs in catastrophic case management
programs. If exclusions for AIDS treatment become the norm, then
the public sector will bear an even larger share of the
responsibility.

382

 

 
 

 

DR. CONWAY-WELCH: Thank you very much, Ms. Luby. The
cost benefit analysis is particularly interesting in your
attached report.

DR. CONWAY-WELCH: I would like to open the panelists
up now for discussion, questions, answers, comments by the
Commissioners. Let me ask Mr. Creedon if he would begin, and
then you may have questions later.

MR. CREEDON: I have a question for Mr. Thompson. We
had some witnesses who basically were involved in hospital
management who confirmed what you are saying about a significant
percentage of the cases involving, were involved with Medicaid.
Medicaid frequently, under this DRG approach, this Diagnostic
Related Group approach, have been paying less than the costs that
the hospital incurred in taking care of the patient, and I guess
when the DRG approach was put in, it was an effort to avoid
giving the hospitals a blank check by saying, in effect, that,
well, if you have an appendectomy we are going to pay you x
dollars and not whatever your costs are so it was an effort at
holding down costs, and I think it made sense in principal but
the impression we get now from hospital management people is that
hoy arc just not paying anywhere the costs that are being
incurred, and 40 percent was mentioned as one perhaps average
payment that they received from the government for a Medicaid
case, 40 percent of their actual cost. So, as you said, the
added costs are either being charged as bad debts or assumed
somehow or shifted to someone else like to the employer who is
paying claims.

I guess what I am asking is whether you have any
suggestions, Mr. Thompson, as to how you avoid giving the
hospitals a blank check and yet at the same time pay them a
reasonable amount in relation to the costs that they actually
incur.

MR. THOMPSON: Well, I am one of the co-developers of
DRG’s. The DRG system was developed at Yale with myself and Dr.
Robert Fetter. Now, when we developed the DRG’s, there was no
such disease as AIDS, and since the payment is based on past
experience, I would certainly agree with the gentleman that
whatever he is getting paid is probably underestimated because we
just did not have that experience.

However, relatively few Medicaid programs are paying on
DRG’s. DRG’s is a payment system adopted by Medicare and, as I
showed you, only two percent of the AIDS cases fall under
Medicare. Some states, and I would have to know what state the
person came from and all that sort of business, have adopted the
DRG system for the payment of Medicaid patients.

383

 

 
 

 

Under my second recommendation, about this information
system, one of the purposes of carrying it out would be so that
we could properly cost the care of persons with AIDS and
therefore reimburse hospitals fairly based on accepted patterns
of care, I also want to reinforce what Ms. Luby said, hospital
care is not the answer to AIDS. Managed care with home care and
nursing home care and hospice care is the answer. In many
Medicaid programs, you cannot have managed care under the present
constraints of the state program. When I urged that the Federal
Government study this and change their standards, that is what I
mean, not just make available waivers which they do now, but
mandate new standards.

MR. CREEDON: So that there would be managed care in
the hospital, outside of the hospital, chronic, or whatever, and
Medicaid would pay for that whole process, maybe on a capitation
basis or something.

MR. THOMPSON: Well, they would probably pay for
hospitalization on DRG’s and then a percent of the charges or
fees on the other care sectors. You see, there is some feeling
that physicians and nursing agencies are crooks, that they are
going to bill you all they can possibly bill you. That is really
not true. You can derive standards of payment just like you can
derive standards in anything else. If until you have the
information, you are floating free, as they are now without any
information, you cannot even judge the fairness of fees.

MR. CREEDON: Was not the DRG system based on the
premise that they were overcharging for certain types of
operations?

MR. THOMPSON: Yes, and there was also based ona
premise that they were keeping them in the hospital too long. It
was also based on the premise that they should not have been in
the hospital in the first place. Since DRG’s have been in
effect, we have seen a fall in patient days, and we have seen a
fall in admissions. We have not seen quite so great a fall in
costs unfortunately, but we have had some fall.

MR. CREEDON: Well, the trick then is to avoid the
blank check, provide the restraints but at the same time pay a
reasonable amount.

MR. THOMPSON: Including consideration for quality of
care standards and financial standards.

MR. CREEDON: Thank you.

DR. CONWAY-WELCH: Ms. Pullen?

384

 

 
 

 

MS. PULLEN: That pretty much covered what I was
interested in.

DR. CONWAY-WELCH: Dr. Lilly?
DR. LILLY: I will pass for the moment.
DR. CONWAY-WELCH: Ms. Gebbie.

MS. GEBBIE: Ms. Luby, I am sorry I did not hear ali of
your presentation. I have had a chance to take a quick look at
it. One of the things that I hear quite frequently is the
concern that while persons infected with HIV may start out
insured, their insurance is often employer-related, and by the
time they are in most need of payment for illness treatment, they
are too ill to be employed, their insurance is lashed and they go
over to the public system. I would ask if you have any
information first of all on whether that is happening or are you
in fact able to follow your patients through from referral to
death. Second, if you are having any experience from that, is
the managed plan which you have worked out being carried over
when they shift over to a public sector payment of some kind, or
does it all fall apart and they kind of start over again.

MS. LUBY: I was just in Pittsburgh this week dealing
with just these issues with the office there. Most private
insurance plans these days have either extension of benefits
after a person has been terminated if, in fact, they are
terminated, or they are eligible for COBRA. That is, again, a
very high cost for an individual to pick up. What happens is
that every single employer who is buying health insurance writes
the benefits that they want into their own plan, and so every
single plan is different. Some may have a plan where they have
six months of short term disability. Some may have a plan where
they have twelve months of disability. What our case managers
do, because they have an insurance background as well as most are
registered nurses. There are some physical therapists, some
occupational therapists, but the primary profession is registered
nurses.

What they do at the beginning is we have benefit
specialists who look exactly at that plan and then figure out
what is going to be the length of the total window of coverage
that we will be able to give them, and we plan our case
management plan with that in mind. So you are correct, there is
the possibility, but really, if someone is covered and they have
become permanently disabled, 5 months, they are eligible for SSDI
then they will be on the public sector.

MS. GEBBIE: So out of the 237 cases that have been
referred to you, you have been able to continue your services

385

 
 

through their entire course of treatment, through death in the
cases you mentioned?

MS. LUBY: In mostly all of those cases, the cases that
I was dealing with just this week were cases where people are on
AZT and where they are living longer and we are trying to figure
out what we are going to do with these and what is going to be
the run-out of their plan. It is going to be an increasing
problem, but currently we have followed all of our cases through
to conclusion.

MR. CREEDON: If I may supplement a little bit, what
ms. suby said, many large employers at least, if someone becomes
ill with AIDS or anything else, to the extent where they are not
able to work, they are not terminated. They go on disability.
There is a disability insurance plan that is a part of their
employee benefit plan. While they are on disability, they are
entitled to whatever medical coverage their employees have. So I
would say many of the people, at least in large corporations, in
smaller corporations it might be different, many of the continue
on disability, continue to have their medical coverage and would
be subject to case management that Ms. Luby provides.

MS. GEBBIE: At least as I listen to people in the
community, there certainly is a description of a substantial
portion who do not have that benefit available to them, and they
are faced with that. The other question would be to get some
sense of the cost of your services, maybe it is in there if I
looked at little farther, but we have heard a lot about a variety
of case management models, and I think we are going to be trying
to look at different ones. It would be very helpful to know what
is the cost per patient of the management you provide, using
nurses or using the other professions you have involved. If you
could comment on that and perhaps provide us some written
materials, it would be very helpful.

MS. LUBY: There age 2 general ways case management
services are paid for, again, there is a wide variety. Employers
can choose to pay a capitated rate for their entire book of
business with us. If somebody has 20,000 employees, they may pay
a fixed amount per employee per month for all catastrophic
illness and injury management, AIDS being one that is covered
under that. The other way is that there is payment on a
billable hour charge. If we spend ten hours setting up a
treatment plan, over the course of the illness, we bill on hourly
rate for our time. I might add, the programs that work best, in
medical case management, are voluntary programs. We do not try
to tell the physician what to do. We work cooperatively with the
physician and with the insured person, and that is when they work
the best. The employer pays a billable hour rate or a capitated
rate because they see it as an added employee benefit.

386

 
 

 

MS. GEBBIE: Thank you.
DR. CONWAY-WELCH: Thank you. Dr. Walsh?

DR. WALSH: I do not really have anything but a brief
comment other than to say that it is the parent that, we are in
an era of managed medical care since the last decade anyway, and
where we are into implicit financing instead of, I mean, explicit
instead of implicit financing, and DRG’s have, yes, had some
effect.

This is no place to argue as to what the reasons were
for or whether they will continue to be effective since so many
hospital administrators have learned how to bear the system, and
but it is obvious that AIDS falls into a category, as Mr.
Thompson has pointed out, the disease that did not exist, and
even under the era of managed medical care, nobody quite know how
yet to manage the costs of AIDS. We have heard hundreds of
witnesses with a variety of questions, some of which are the same
as the ones that you all have made so I think I would like to
reserve my questions until after Dr. Winkenwerder and his
colleagues speak because we are only hearing half of the story,
and I think we would be better served to question maybe all four
after the other side.

DR. CONWAY-WELCH: I wonder if you two would be willing
to remain at the table as we have the additional panelists come
through the afternoon, if your schedule would permit you to do
that. I suspect there may be additional questions you could help
us with. Dr. SerVaas, did you have anything?

I had one question that may have two parts. The Issue
of a quote, unquote, DRG for AIDS, which you spoke about in terms
of the difficulty in developing, could you comment on that vis a
vis the problems with the information systems as you seem them.
You mentioned that basically with epidemiology, the clinical
progress and the cost need to be integrated before you can
identify reasonable DRG for AIDS. How far are we away from that,
is that going to happen, is that a naive question?

MR. THOMPSON: We are not very far from that.
Actually, New York State is working on that now and is actually
trying to validate the change to the DRG system to isolate out 15
different DRG’s based on AIDS which takes into effect the type of
complication, medical complication the person has, the age of the
individual, and whether it was an opiate or non-opiate related
disease. So we can expect some information on DRG’s out fairly
shortly. We are proposing this kind of a system in Connecticut,
more on the so-called cancer registry model so we can send
reminders to physicians and hospitals, have you seen this patient
lately? What kind of treatment is he getting and this sort of
business, just as they do on cancer registry.

387

 

 
 

 

DR. CONWAY-WELCH: Thank you very much. Are there any
other questions? I would like to go ahead if we may then and
iuvice the other three panelists, if they are all here for the
remainder of the afternoon, if you all would stay there if your
schedules permit, that would be very helpful. Dr. William
Winkenwerder, Mr. David Rust, and Mr. Douglas Peters.

I appreciate the effort that you have spent in
preparing your comments for the Commission. We also are
sensitive to the fact that we asked you all to do that over the
holidays, and that I am sure you and your staffs had a busy time.
We appreciate that very much. I would like to explain how we,
approximately how we will proceed. We would like the three of
you to present your comments or recommendations or summaries to
the Commission and there then will be questions and answers that
the Commissioners will address to the three of you. Are there
any other comments or concerns on the part of the Commissioners?
Then we will go ahead and begin.

First of all, I would like to introduce Dr. William
Winkenwerder. He is Special Assistant to the Administrator, AIDS
Coordinator at the Health Care Financing Administration. Dr.
Winkenvwerder.

DR. WINKENWERDER: Thank you. If I could ask if it
would be any problem for Mr. Rust to go and precede me, I think
it might help in the understanding of some of the comments that I
am going to make about the Medicaid program.

DR. CONWAY-WELCH: That is fine. I will introduce Mr.
David Rust, Associate Commissioner for Disability, Social
Security Administration. Thank you, Mr. Rust.

MR. RUST: Thank you, Madame Chairman. I believe you
all have copies of my testimony. Let me touch on some of the key
points. I think it is important because it puts our program in
context and there is such a strong linkage between our program
and the Medicare and Medicaid programs that I think it will fit
together better if we do it this way.

I am delighted to be here today to discuss with the
Commission the way we evaluate claimants with Acquired Immuno-
deficiency Syndrome under the Social Security Disability
Insurance Program and the Supplemental Security Income program.
We share your concern about the needs of the AIDS patients, and
we are committed to providing prompt, efficient and compassionate
service.

Let me begin by stressing the definition of disability
aS it appears in the Social Security Act. The definition that we
use is as follows: the inability for a person to engage in any

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substantial, gainful activity by reason of any medically
determinable, physical or mental impairment which can be expected
to result in death or which has lasted or can be expected to last
for at least 12 months. Claimants with AIDS meet this
definition. I want to stress again that it is a very strict
definition in the law, and we have had a very strict definition
throughout the entire 30-plus years that this program has
existed. Medicare benefits are available after the Social
Security disability beneficiary has received payments for 24
months. Medicaid benefits are generally available upon
ceiiysbility for SSI payments.

I will briefly describe how we evaluate a claimant who
alleges AIDS or any other disability. The first test is whether
or not the person is working, i.e., if he or she has earned
income above the level of substantial gainful activity. If the
answer is yes, they are working, we deny then, regardless of the
diagnosis, regardless of their condition, or the severity of
their impairment. If the answer is no, they are not working, we
proceed to the next step.

The next step is: does the person have a severe
impairment. If the answer is no, that the impairment is de
minimus, we deny them at this point. If it is yes, they have a
severe impairment, we proceed to the next stage which is, is that
condition severe enough that it meets or equals the regulatory
standards contained in the listing of impairments that we have
published in the Federal Register. We organized the impairments
into 13 different body systems, and we have standards in each of
those areas. If the answer to that question is yes, we allow the
claim at this point on medical evidence alone.

If the answer is no, we go to step four. The person is
impaired, but do they have the ability to do their prior work?
If the answer is yes, we deny them at this point. If the answer
is no, we go to step five. Step five is can the claimant do work
for which he or she is reasonably equipped to do by reason of
age, education and prior work experience, any other types of work
in the national economy. If the answer is yes, we deny them at
this point. If the answer is no, we allow them at this point.

So it is a complicated sequence of determining not what
the person’s diagnosis is, but whether that person is rendered
unable to work. I would stress it is not just a medical
decision, it is a medical-legal decision.

AIDS was identified, as, I am sure the Commission has
heard many times, by the Centers for Disease Control in the
summer of 1981. They published criteria for AIDS cases at that
point. By 1983, we were beginning to take steps. SSA had
recognized that we had a national health problem and the question
was how could we apply the CDC criteria in the adjudication of

389

 

 
 

 

AIDS cases. We decided that the person who met the standard of
CDC-defined AIDS met our listing level of impairment severity and
was allowable on the medical basis alone, as long as he or she
was not working.

CDC revised its definition of AIDS effective September
1, 1987. The revised CDC definition reflects recent medical
advances and the development of additional testing for the HIV
virus. We have accepted the expanded definition, which added HIV
dementia and HIV wasting syndrome to the definition of AIDS.
These two conditions had previously been part of ARC, the AIDS
Related Complex umbrella. We have incorporated the recently
revised CDC standards into the criteria for AIDS which we use to
evaluate and adjudicate cases, and we have sent that instruction
out to all of our adjudicating units.

Since AIDS as defined by CDC is not necessarily
Ucoiyned to designate the level of disability required for the Ss
programs, we will continue to follow future developments
regarding CDC’s definition of AIDS, and we will consider future
revisions to our own evaluation guidelines when that is
appropriate. We have recently convened a panel of physicians who
will consider updating a number of our regulatory listings.
Included in the mandate of this panel is to look at how we would
develop and the desirability of developing a specific listing for
AIDS. After we receive their recommendations we can take the
appropriate action to establish a separate listing for AIDS.

Ifa person alleges AIDS but does not have the
condition that is indicative of AIDS as defined by CDC and thus
is not automatically eligible to meet our standards, we process
that case through those five sequential steps just as we would
with any other disability applicant. If the person’s impairment
is severe enough that it prevents him or her from working, from
doing either their past work or other work for which they are
reasonably qualified to undertake, we then award benefits. This
is often the situation with ARC cases where the functional impact
of the impairment can vary widely from case to case.

SSI is a program that has a means test. It is focused
at people who have limited resources and limited income. A
claimant for SSI disability benefits may receive up to three
months payment if he or she is presumed disabled and otherwise
eligible, i.e., they are not working and they meet the income
standards of the program. This is done before we make a formal
determination of their medical condition, and it is done in most
of the cases where the person alleges AIDS and we have had a
confirming contact with the physician.

In 1985, we authorized our local Social Security
offices to make such a finding of presumptive disability after
that confirming contact. Prior to that, we had advised the state

390

 

 
 

 

disability determination services to use their presumptive
disability authority in cases of AIDS. That speeds the process
up and it gets benefits to the person in a much more timely way.

Our regional and field offices have also conducted
aggressive and active outreach activities in order to better
serve people with AIDS. For example, here are some of the
initiatives that we have carried out in various regional offices.
We have a teleclaims procedure for AIDS claimants, many of whom
prefer to present their claims to SSA over the telephone rather
than coming in to waiting rooms and where their chances of
exposure to infections and are greater. We maintain strong
liaisons with various local hospitals and also with comnunity
support groups. We have set up special arrangements with
advocacy groups and health and social agencies to assist them in
taking claims from AIDS patients or in referring claimants to SSA
for consideration.

We have conducted seminars with the medical community
and with hospital staffs to explain our evidentiary requirements
so that the materials produced by the medical community best fits
what we need in order to make a disability determination.

What have we observed of the impact of AIDS on the
Sucial Security Insurance program, and also on the Supplemental
Security Income program to date? Nationally, the Social Security
Disability Insurance beneficiaries with AIDS have been
predominantly male, 95 percent, with an average age of 38 years.
In the SSI program, about 90 percent of the recipients are males
and the average age is slightly lower, about 34 or 35 years.
About 44 percent of our recipients have been from New York or
California. There is great geographic concentration. Most are
urban rather than rural.

As of November 26, 1987, we had received 20,657 claims
for disability benefits under the two programs based on the
allegation of AIDS or ARC. We have awarded benefits to over 98
percent of the AIDS cases and 68 percent of the ARC cases. The
overall allowance rate for both AIDS and ARC is about 94
percent.

If we focus only on the Social Security Disability
Trust Fund beneficiaries, the SSDI program, we find that of the
13,000 cases awarded through June of 1987, less than 46 percent
are still living. Less than 20 percent of those who began to
receive benefits before 1986 are still alive. The data suggests
that the SST experience is similar.

It is estimated that the rapid growth in the number of
new, disability awards based on AIDS or ARC will continue.
However, the assumptions necessary to make meaningful assessments
of the impact of AIDS on the disability insurance trust funds and

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on the SSI program, beyond the next few years, are difficult to
narrow down. There are four basic assumptions, Madame Chairman,
that are necessary to make meaningful projections even in the
short term. One, the number of new cases that we will receive in
future years. Two, the proportion of all cases which result in
disability insurance or SSI claims. Three, the average level of
benefits received and, four, the average duration on the
disability roles.

In the near term over the next four or five years, we
estimate that the AIDS/ARC Social Security Disability Insurance
and SSI payments will grow faster than the overall disability
program costs. However, the estimated AIDS/ARC costs in 1992
still represent less than two percent of the total Social
Security Disability Insurance benefits estimated to be paid in
that year, and also less than two percent of the SSI disability
program costs in that same year. SSI, draws from general
revenues, not from the Social Security Trust Fund so the programs
are funded differently.

In the short term, AIDS and ARC costs do not appear to
present a significant threat to the financial well being of the
Social Security Disability Insurance Trust Fund or the SSI
program; although, as an aside, Mr. Chairman, I would stress that
actuarially over the next eight, ten, twelve years, depending on
the performance of the economy, we may have financing problems in
the Social Security Disability Trust Fund, but a lot depends on
other factors. AIDS, itself, does not seem to be a major
contributing factor to that problen.

Of course, any estimate of the incidence of AIDS or the
wesulting costs to the Disability Insurance Trust Fund and the
Social Security Supplemental Security Income program, are subject
to substantial uncertainty. The effects of AZT and other drugs
or treatments could increase or decrease the proportion of AIDS
patients among total disability beneficiaries. Given the
uncertainty surrounding the projections of AIDS and ARC costs, it
is clear that the situation warrants the close monitoring which I
can assure you the Social Security Administration will continue
to give it. Madame Chairman, as we get more information, we
will be glad to share it with you as it becomes available to us.

Confidentiality. SSA has always maintained a high
degree of confidentiality for all personal information in its
files. Our basic disclosure position rests on the principle that
has been the foundation policy of Social Security since it was
founded 50 years ago. That is that we do not divulge personal
information acquired in administering our programs so that
individuals will feel free to divulge any information that is
needed and pertinent for a complete and accurate assessment of
their claims and benefits.

392

 
 

 

SSA’s basic principle on disclosure of information is
embodied in our regulations implementing the Privacy Act, the
Freedom of Information Act, and Section 1106 of the Social
Security Act itself. These provisions apply not only to the
Social Security Administration, but also to our agents and our
contractors who do much of the disability determination work for
us and their employees.

Even though laws and regulations require the routine
disclosure of information from Social Security records for
purposes related to health and income maintenance programs, we
have concluded that individual, identifiable diagnostic
information should not be routinely made available. Beyond the
high level of privacy protection given to personal information in
general, SSA has always maintained an even stricter level of
protection for medical information. Accordingly, we do not
aisciose such information concerning AIDS victims without the
authorization of the individual themselves.

Mr. Chairman, this concludes my statement. I hope I
have responded to the areas of our program that the Commission
had expressed an interest in. It is my pleasure, at the
appropriate time, to answer any questions to the best of my
ability.

DR. CONWAY-WELCH: Thank you very much, Mr. Rust. Dr.
William Winkenwerder, Special Assistant to the Administrator,
AIDS Coordinator, Health Care Financing Administration. Welcome,
Doctor. .

DR. WINKENWERDER: First of all, I want to say that I
am pleased to be here today to discuss the financing of AIDS
medical care and the role of the Health Care Financing
Administration. I also want to say that Dr. Roper is very sorry
that he is unable to attend today’s hearing and wishes that he
could have been here.

The cost of care for patients with AIDS and
AIDS related disorders is rapidly emerging, as you well know, as
a major health policy concern. As has been stated,, earlier by
Mr. Thompson and I am sure others, the Health Care Financing
Administration plays a central role in financing the care of AIDS
patients. Nationally an estimated 40 percent of all patients
with AIDS are served under Medicaid. But in areas such as New
York City and New Jersey and certain other parts of the country,
the proportion may be as high as 65 to 70 percent. Medicaid now
bears nearly 25 percent of the total medical care cost of AIDS.
However, depending upon the spread of AIDS among intervenous drug
abusers and their sexual contacts and low income individuals, it
is our belief that this could rise.

 

 

 
 

Let me briefly explain the Medicaid and Medicare
programs. Medicaid, as has been stated, is a jointly funded
program between the Federal Government, which pays approximately
55 percent of the total costs, and the states about 45 percent.
Medicaid operates under broad federal guidelines with
considerable discretion being left to states about many different
issues, including eligibility and coverage for services. Most
patients with AIDS become eligible for Medicaid by becoming
disabled, a process for that has been well described by Mr. Rust,
and therefore meeting the requirements of the Supplemental
Security Income progran.

There are some other individuals, however, who become
eligible by being in categorically eligible programs such as Aid
to Families with Dependent Children or by being "medically
needy,". About 36 states have medically needy programs where if
one falls into a loss of income and assets because of their
illness, they can qualify for medicaid. Medicare, on the other
hand, is a totally federally funded program whose benefits are
available to those 65 years of age and older, to those who
survive a 24-month waiting period after becoming disabled and are
receiving Social Security disability benefits, and to those with
end stage renal disease. Because very few AIDS patients are 65
years or older, and because most die within two years of
diagnosis, only a small percentage, it is estimated less than one
percent, are on Medicare.

Projections have been made regarding the financial
impact of AIDS to the Medicaid and the Medicare programs. In
fiscal year 1988, we estimate that about $600 million will be
spent on AIDS in the Medicaid program. This will rise, we
estimate, to about $2.4 billion by fiscal year 1992. I want to
remind you that these costs do not include the costs of AZT which
are estimated to be about $50 million in 1987, the first year of
its use, and which could reach $120 million in the coming 1988
year. It also does not include the $30 million that was
appropriated by the Senate for low income individuals to buy AZT.

Although outlays for AIDS in the Medicaid program are
expected to grow rapidly in the coming years, these amounts are
only expected to reach three percent of the total Medicaid budget
in 1992. Projections regarding the financial impact of AIDS to
Medicare, of course, are far less, approximately $15 million this
year, rising to $60 million by 1992. But I would remind you that
these estimates do not assume any increased longevity of AIDS
paticnts due to AZT or other new therapies and there is a fair
amount of evidence that many AIDS patients are already beginning
to live longer.

The Health Care Financing Administration wishes to set
out four basic principles which we believe should be applied to
financing the care of AIDS patients and access of patients to

394

 

 
 

 

that care. First, and most importantly, AIDS should be
approached similarly to other serious and terminal illnesses. We
believe that it would be unwise policy to single out one disease
from the many others that cause large numbers of deaths and
disability such as cancer or Alzheimer’s Disease. New and
separate payment mechanisms or separate systems of care should
not, and I repeat, should not be set up to deal with AIDS. We
believe that the national policy in paying for AIDS should be one
that utilizes all the existing methods for health care coverage
that currently exist, that builds upon the strength of our
current system, and that adds new resources where they are
appropriate and needed.

Second, paying and caring for AIDS patients must be a
shared responsibility. Broad support is needed, both from the
private and the public sectors. Within government,
responsibility should be shared at all levels from the Federal
Government to the state governments to the local communities.
Within the private sector, responsibility must be accepted not
only by group insurers but by those offering individual coverage,
self-insured employers, charities, churches, and private
foundations.

Third, states should have the flexibility they need to
pursue optimal approaches for their respective residents.
Because of epidemiologic factors, such as the wide variability of
intravenous drug abuse, different states have markedly different
AIDS populations, and this does affect the Medicaid program, as
has been stated. Methods for delivering and financing care will
need to vary, depending upon these population differences, as
weil aS unique state resources.

Finally, all health care professionals have an
obligation to care for AIDS patients, and those with the HIV
virus. Care should not be denied because and individual has AIDS
or the HIV infection. Broad access to care can be insured only
if all health facilities and medical professionals are willing to
provide care.

I would like to make just a couple of other comments
that are not included in the prepared text, and that is, that the
Health Care Financing is responding to AIDS, that we are working
closely with the Assistant Secretary for Health, the Surgeon
General, the Social Security Administration and other agencies of
the Public Health Service to insurance maximum coordination on
these AIDS issues. Within the past year, we have developed an
AIDS task force which I chair, which is co~-chaired by Mr. Elmer
Smith who is very knowledgeable about Medicaid issues. We meet
on a regular basis to analyze policy issues and concerns. We
work with the Public Health Service on the Public Health Service
Task Force on AIDS. We have appointed AIDS coordinators in all
ten federal regions of the country to collect information and to

395

 

 
 

 

keep us abreast of the local issues. States are being encouraged
to collect and provide information regarding the impact of AIDS
to their Medicaid systems. And finally, we are funding research
at this point and soliciting more proposals.

Recently, in the Federal Register, we let it be known
that we are very interested in more proposals to study the costs
and financing of AIDS. I just want to let everyone know that we
are working hard, that we care about the situation and that we
would like and want very much to respond to this epidemic ina
humane, caring way, but in the most cost-effective way that we
can. Thank you.

DR. CONWAY-WELCH: Thank you very much, Doctor.

DR. CONWAY-WELCH: I would like to introduce Mr.
Douglas Peters, Senior Vice President, Blue Cross of Chicago.
Mr. Peters.

MR. PETERS: Thank you. Mr. Chairman, Madame Chairman,
members of the Committee, we appreciate the opportunity to offer
our perspective on some of the issues related to AIDS. As the
largest health insurer in the country, serving nearly 80 million
Americans in our private business, AIDS is obviously of vital
concern to us. In my remarks, I will discuss some of the issues
we see, some of the current activities and practices among Blue
Cross and Blue Shield plans, and offer a few recommendations for
your consideration.

Our 70 member plans across the country have long been
known as providers of comprehensive health insurance benefits,
often to individuals who are otherwise considered uninsurable.
We have also been extensively engaged in community education
efforts and providing educational materials to help control the
spread of AIDS. Because this has been a major focus of Blue
Cross and Blue Shield Plans. I wish to comment further on these
efforts.

To date, AIDS has not significantly affected our
practices. We certainly share HCFA’s view regarding the
avoidance, if possible, of creating a series of separate
scenarios. We are concerned about the effect of AIDS on the
health care system and the potential problems AIDS could pose in
our ability to continue to provide comprehensive health benefits
at affordable prices. There is clearly a risk to the private
health insurance systen.

Private health insurance relies on its ability to
accurately project the cost and utilization of health insurance
benefits. The uncertainty surrounding AIDS, particularly with
regard to its potential prevalence and the cost of treatment
presents special. problems to the health insurance industry. One

396

 

 
 

 

particular problem for Blue Cross and Blue Shield Plans is the
possibility of adverse selection. Because we have comprehensive
benefits, and liberal underwriting standards or open enrollment,
high risk individuals are attracted to our products. This is
what we in the insurance industry call adverse selection. It
occurs when an individual who knows he or she is at risk for
large medical expenses selects a health insurance program with
comprehensive benefits. The consequences of adverse selection
can be a group of insured individuals having a higher
concentration of poor risks(those who have medical conditions
requiring ongoing treatment).

When the insurer sets a premium for the entire group,
adequate to cover the expenses of the poor risks, the healthier
individuals may leave and seek coverage in groups with, on
average, better risks and consequently lower premiums. This
movement of the better risks serves to further increase the
concentration of poor risks which, in turn, causes premiums to
increase further thus driving out even more of the better risks.
This cycle of adverse selection, if not controlled, can spiral to
the point that an insurer may not be able to attract a sufficient
number of better risks to allow competitive pricing and continued
viability. Taken to an extreme, adverse selection can compromise
the financial solvency of the insurance carrier.

To avoid this situation, many insurers engage in
medical underwriting. They try to screen applicants for
pre-existing medical conditions that result in expensive
treatment costs. I would note that many of our Plans provide
coverage to anyone who applies regardless of their current health
status or pre-existing conditions. Many Blue Cross and Blue
Shield Plans will provide coverage with minimal restrictions on
pre-existing conditions. To date, 15 states have enacted
legislation creating risk rules for people who cannot obtain
private health insurance. Unfortunately, this coverage can be
very expensive, ranging from 25 to 100 percent higher than normal
non-group rates. Within states where Blue Cross and Blue Shield
does not offer open enrollment, risk pools assure that coverage
is potentially available.

I would like now to discuss the coverage that Blue
Cross and Blue Shield Plans generally offer. I will limit my
remarks to those services of particular concern to AIDS patients.

Plans have been able to extend their current contract
administration to accommodate AIDS patients. Most plans, for
example, make coverage available to the drug AZT through their
normal, pharmaceutical coverage programs. Further, most plans
offer coverage for home health care services, and the majority of
our plans offer hospice benefits. These benefits are of
considerable value to our subscribers but even more important
perhaps, as has been referred earlier in the testimony, is the

397

 

 
 

 

increasing availability of individual benefits management or case
management. Forty-six plans now offer individual benefits
management through which the benefits are provided on a
case-by-case basis. We do so if exceptions to the subscriber’s
contractual benefit provision are required.

Through these programs, plans cover the care for
subscribers that might not ordinarily be defined as covered
services. I believe you heard previously what case management
does, and how case managers work more closely with the physician
with discharge planners and various community agencies and the
patient to tailor a program of care best suited to the patient’s
need. These programs do not pay for everything. They do not
finance housekeeping services, nor most social services, but they
do create an important link between the insurer and the voluntary
community agencies best equipped to provide these services.

Case management also helps manage the cost of care
provided to subscribers. Our ability to manage costs effectively
will allow us to continue the practices which make our coverage
both available and importantly, affordably. The plan in Blue
Cross of Western Pennsylvania has found the use of medically
appropriate home health and hospice care for AIDS can reduce
treatment costs by $400 to $600 a day. In their experience, this
can translate into reduced AIDS treatment costs of up to 50
percent. Blue Shield of California has had more than 65
AIDS-related cases in its case management program. This
represents 10 percent of its case management cases. The plan has
not calculated the savings per case for AIDS patients. The
Savings for the program overall in 1986 averaged nearly $4,800
per case.

Due to the difficulty of identifying AIDS claims and in
the reporting of AIDS, we are unsure of the actual number of our
subscribers who have received services for AIDS. Our estimates
indicate that the number of AIDS patients among our subscribers
reflect national trends in general, with the highest number of
cases in New York, California, and New Jersey. Critically,
however, relatively few AIDS patients have private health care
coverage, as I believe you have heard previously.

Jane Sisk of the United States Congress Office of
Technology Assessment reports that 7 to 65 percent of payment for
health care services rendered to AIDS patients is provided by
Medicaid. You heard a more specific figure previously. One to
three percent of financing is provided by Medicare, 13 to 65
percent by private insurance and 2 to 40 percent of AIDS patients
remain uninsured. Our analysis of AIDS per case costs also
produces very broad ranges. The Plan experience seems to vary by
state and even by local community. Blue Shield of California,
for example, has reported lifetime AIDS patient care costs to
cauye Croom $7,500 to $110,500. Half of their cases cost less

398

 

 
       
     
   
        
      
   
   
   
     
     
   
   
   
   
   
   
      
      
     
          
          
  
    
   
   
  
  
  
   

than $52,500. The average per-case cost in their experience has
been $54,000.

Such ranges are so wide as to provide almost no
guidance. However, they do highlight an important variable, the
uncertainty surrounding the proportion of AIDS patients who have
private coverage and the proportion who will require public
services and assistance. This uncertainty must enter into our
planning, and as you have heard from HCFA’s testimony, into
public sector planning alike. The CDC’s data indicates, for
example, that as many as 23 percent of persons with AIDS
contracted the HIV virus through drug abuse practices. These
individuals may be least likely to have private insurance
coverage, and least responsive to the AIDS transmission
prevention efforts and most in need of medical and social welfare
services.

Plans have been very active in their communities with
respect to awareness and educational programs regarding AIDS.
They are using a variety of approaches including public foruns,
printed materials, videotapes and radio announcements. At last
count, Blue Cross and Blue Shield plans have distributed more
than one million copies of the booklet, AIDS: No Nonsense
Answers, a 20 page report in a question and answer format. We
believe your consideration of the following recommendations will
add to a more effective resolution of the spectrum of challenges
which AIDS presents.

First, to help in care, we are certainly supportive and
encourage the further development of case management. We need to
find more ways to support the development and expansion of
community-based services in this regard.

Second, to help in eliminating the disease, we are
supportive of an encourage additional federal expenditures on
research dealing with AIDS.

Third, to help finance the cost, we encourage
consideration of voluntary state risk pools which involve the
participation of employers who self-fund their benefits to make
coverage available for persons of high risk. Thank you very
much.

DR. CONWAY-WELCH: Thank you very much. I know Ms.
Luby does have to leave to catch a plane shortly so I just say
that for information. I would like to start on my right with Ms.
Pullen who is not there. With Dr. Lilly and given our time
situation, I think it is all right to suggest two questions are
fine if people have that.

DR. LILLY: I wanted to ask Mr. Rust to follow through
with me the progression into your system. When a PWA has lost

399

 

 

 
 

 

his or her job, he become eligible for SSI, and he receives as I
understand it, a fixed amount, $325 per month, is that right, or
at least it was that much in Georgia.

MR. RUST: It is $354 now. It is adjusted yearly, and
SSI benefits may vary a little bit by other sources of income
that the person may have.

DR. LILLY: Okay. Now, after 18 months, the person
must apply for SSD, which is a sort of permanent disability, is
it not, is that your --

MR. RUST: No, sir. When we make a determination of
disability, we do not have a concept of temporary disability. We
find the person disabled, that his or her condition has lasted
for 12 months, will probably last for 12 months or will lead to
death. We put them on the rolls and they come off the rolls
either by voluntarily going back to work or if they medically
improve, we have something like a tickler file --a case
designation -- called Medical Improvement Expected, and we may go
back and review the case at a later date. But the claimant
himself, the recipient or the beneficiary himself does not have
to come in at a later date to get a permanent status.

DR. LILLY: So it is permanent for the length of the
disability and if the PWA lasts for a very long time then he or
she will be on SSI for a very long time, and always with a fixed
income. Is that right? That is, the currently $354.

MR. RUST: Under the Disability Insurance program, it
is an entitlement, probably most of the members of the Commission
are covered, most people except federal employees are covered by
Social Security --

DR. LILLY: It is not income related?

MR. RUST: It is not income related. For SSI, we look
at them on a regular basis, dependent upon their other sources of
income. Their SSI benefit may go up and down, based on other
changes in their financial situation.

DR. LILLY: But the $354 is currently the maximum then?

MR. RUST: Except a number of states supplement that
with additional funds.

DR. LILLY: With the supplementing, does that ever
bring an individual to the point of income where they no longer
are covered by Medicare?

MR. RUST: Medicare?

400

 

 
DR. LILLY: Or Medicaid, I am sorry.

MR. RUST: The state supplementation does not. If they
were to' return to work, or, for some people, if their Title II
kicks in, and if their Title II benefit is large enough to make
then inelicible for Title XVI, that can change their eligibility
for Medicaid in some states.

DR. LILLY: Okay, I will think this through some more.
DR. CONWAY-WELCH: Ms. Gebbie?

MS. GEBBIE: I am having trouble picking my two, but I
will work on it.

DR. CONWAY-WELCH: We can come around again.

MS. GEBBIE: Okay. Mr. Rust, your presentation sounded
very simple, yet I know from sitting in a lot of meetings that
people who have tried to apply and get on your system somehow do
not experience it that way.

MR. RUST: That is the difference between fact and
theory.

MS. GEBBIE: Yes. A couple of pieces that I would
appreciate it if you would comment on. The first question is how
widespread are what sound like very nice initiatives like the
teleclaims and the close work with doctors to teach them just how
to fill out the forms right. I am not aware of that being
universal across the country, and secondly, what is the average
length of time from when a person walks in and starts filling out
forms or calls up and starts applying and they actually are fully
enrolled on your program? I am told it can be six months for
many people, and that that is a very miserable six month period
while they are sort of left hanging.

MR. RUST: It is going to vary from state to state.
Basically, what the person does is he or she contacts a Social
Security office, of which there are thousands across the United
States. Information is taken, information on the illness,
information on treating sources and hospitals and hospital stays.
A lot depends on the information the person presents. Doctors,
for instance, and hospitals, are better about medical evidence of
record than clinics are.

What happens is that the file flows to a state agency
called the Disability Determination Service and they must develop
sufficient evidence to make a disability decision, either yes or
no. One of the problems we have -- not so much with AIDS because
we nave a rather clear medical definition here -- but where you
get into other disabilities where the determination is not what

401

 

 
 

they have medically, it is whether or not it renders them unable
to work. In those cases we must determine how much medical
evidence exists, do we have to send them out for additional
medical examinations and so forth. It can take a long period of
time. Our average processing time within the Disability
Determination Service nationwide, is in the neighborhood of 60 to
70 days. There is time at both ends of process that so the
answer is we are talking about several months.

Now, for SSI, for people presenting themselves with the
a legation of AIDS and who are otherwise eligible for SSI, we can
make a determination of presumptive disability. All we need to
dn ie have a confirming contact with their doctor. It may be a
telephone call or a letter. We can begin that persons cash
benefits very quickly and then the file goes over to the
disability determination services and the case is fully
developed, but during that period of time, the person receives
benefits.

MS. GEBBIE: How quickly is very quickly?

MR. RUST: A couple of weeks I am told, and in some
cases as quick as seven days.

MS. GEBBIE: What about the first half of the question?
How widespread are the initiatives to make it easier to make the
information more readily available to physicians and others?

MR. RUST: We work with physicians and so forth across
the country, not only for AIDS but for other areas. When we
contact a physician, we are eager that he or she understand what
we need to make a determination. The better they understand our
needs and the better they present their medical evidence
accordingly, the easier it is for us to make a quick and
efficient decision. So we work with the medical community
through the various societies by meetings and so forth on an
ongoing basis of continuing medical education to teach them about
our program and our evidentiary needs.

As I mentioned, 44 percent of our cases come from two
states. Over a third come from three metropolitan areas so we
have concentrated our outreach activity in those regions that
have the largest problem but we do some of it in all areas. The
teleclaims process, for instance, is spreading across the
country. We want to have it some day, where all of our claims
could be taken by teleclaims if a person chooses to do so.

MS. GEBBIE: How widespread is it today?

MR. RUST: It is quite widespread. My recollection is
that we are up to about half of the country now covered by
teleclaims service for disability benefits but it is progressing

402

 

 
 

 

very rapidly. And people seem to like it, by the way. There was
a question at the beginning as to whether people would like to do
business that way. It is much more efficient, and for the people
themselves, it is much more convenient than sitting around in an
office waiting for hours for their interview.

MS. GEBBIE: If you are very, very ill and have been
waiting a long time to get through the system, to have to take
all your paper somewhere is very hard. Thank you.

DR. CONWAY-WELCH: Dr. Walsh?

DR. WALSH: I think really it is, when one thinks how
long it was before we got around to facing this problem, I really
think it is pretty commendable the progress that you have made
when one understands how Washington works. Frequently, the
greatest delay is reaching somebody on the telephone to find out
where to put your application, and that sometimes takes two
weeks.

MR. RUST: We are listed in all phone books. We try to
be, accessible.

DR. WALSH: I mean, there are just not enough phones.
So many calls are coming in, the lines are always busy. That is
what I am talking about.

MR. RUST: We adjudicate about 2.5 million cases a year
in disability alone.

DR. WALSH: Sure. That is what I mean. I can believe
that. So I think you are to be commended for the progress really
that has been made.

On this round, my questions are relatively brief.
Number one, with the still the variations in the picture of care
and required care, Mr. Thompson made reference to the fact that
he felt he and his group were rather close to suggesting a DRG
level for this and many of the witnesses that we have had have
been discussing all the ramifications of care. Are we ready for
a DRG designation on AIDS yet?

DR. WINKENWERDER: I would like to be able to give you
an either yes or no answer, but I cannot.

DR. WALSH: I know you cannot, that is why I --

DR. WINKENWERDER: I can say this, that the
Intergovernmental Task Force on AIDS that was chaired by Dr.
Sundwall within the Public Health Service has recommended that we
study whether this makes sense to have a specific DRG for AIDS
and we plan to do this. That is what will be happening in the

403

 

 
 

 

coming months, and certainly over the coming year. I think with
a closer look at this, we could have better information about
whether this would, in fact, make sense or not.

DR. CONWAY-WELCH: Is Mr. Thompson looped into that
study of the, he has a model of an AIDS DRG.

DR. WINKENWERDER: Not that I am aware of.

DR. WALSH: Yes, I know that. That is why I raised the
question. I was wondering if they were talking with hin.

DR. WINKENWERDER: I would question, however, the
assumption that without an AIDS DRG that somehow these patients
are not being fully paid for, that, in other words, the payment
does not meet the cost of their care. An example I give you is
in New York City, St. Clare’s Hospital, which is one of the
hospitals I am sure all of you are familiar with. It cares for
many, many AIDS patients. A large proportion of their population
is Medicaid eligible. I cannot recall the exact figure, but 80
or 90 percent or something like that. I read recently where this
particular hospital, the Administrator of this particular
hospital had indicated that they would have gone down the tubes,
so to speak, were it not for the reimbursement that has come as a
result of caring for AIDS patients.

NR. WALSH: He was a witness yesterday and told us he
learned to play the system. Yes. This is right, and the
hospital would have gone down the tubes. The other question I
have, Mr. Peters probably could answer, but all of you could
respond to, is I have been very worried at the, I do not call it
a glib acceptance because there is certainly some evidence,
particularly in San Francisco where you have a good network of
volunteer help, but the dependence on our forecasting cost of
AIDS care so much rests upon number one, the existing definition
of AIDS, not including all the ARC patients which I personally
think it should include. I think we are kidding ourselves.

But secondly, on how much money we are going to save
with home health care, and the evidence that home health care, if
it is quality care, is any cheaper than well managed in-hospital
care, certainly in other diseases is very shaky. You know HCFA
has been going through that wrestling match for years and I do
not quite understand the glib acceptable that all we have to do
is get into this home health care business, not that I do not
think it should be done because it is humane, there are many
reasons for it but I wonder if we are kidding ourselves on the
cost. I just do not know.

MS. LUBY: I would love to respond to that. I think
our experience has been, the first case of AIDS that we had in
1985, we got into it at a very late date, and we spent, that is

404

 

 
 

the one that cost $133,000. The way that we used to manage the
AIDS cases was we would get a referral, triggered by an ICD-9
code from a pre-admission review. When somebody was diagnosed as
having AIDS, we would get the referral. If we called that person
at that time and they told us, I am out of the hospital, I am
feeling well, I am back at work, we would close the case because
it was not catastrophic in nature and we thought, why should be
charging billable hours.

We have totally changed that at this point. The
earlier that we get the referral, we then take that case into
care and we start lining up a home health agency. We line up the
homemakers, we line up things before they ever need them because
what has happened is that then the day that we find out that they
are sick, they are thinking about or they may need a
hospitalization, we put that whole plan of care right into place
then. We avoid that hospitalization and it has dramatically
reduced our costs. What you are alluding to I think is what we
have learned over this last year, and why we are finding our
costs going down is because we have the people in place before
they have had one or two hospitalizations.

DR. WALSH: But my concern on that is, as one of the
other Commissioners, I have forgotten which one, pointed out the
other day, that a great deal of the home health care is provided
by volunteers today. Once we take the steps of guaranteeing
payment for every phase of home health care, that picture will
change. I think volunteers will be discouraged to some extent,
hopefully not, but they may be, and just as we have found, as I
mentioned before, hospital administrators learning how to beat
the DRG system in one way or another, I am not saying that we
should not finance it. I am just saying that I hope that ve are
estimating our costs accurately based on experiences like your
own verhaps, and others but that is the only part of it that
worries me. Not that it is wrong, because I think it is still
more humane than leaving them in the hospital.

MS. LUBY: Again, that has just not been our experience
in terms of, it is not pleasant to have somebody else in your
home that many hours a day, an outsider, so we continue, even
though we will pay for homemakers, even though we will pay for
attendants, we still have a large group of volunteers in most of
our homes and people really prefer that. It is almost like we
are encouraging to begin with, the use of homemakers, or the use
to bring somebody in but it is to keep them out of the hospital.

DR. WALSH: Will that work with IV drug use and the
like?

MS. LUBY: No.

405

 

 
 

 

DR. WALSH: I mean, and that is where 54 percent of
your cases in New York are now. What, have you got any
experience on that?

MR. PETERS: I was going to respond, Dr. Walsh, that
our experience with our population that covered subscribers is
quite similar. In California Blue Cross experience, the length
of stay in hospitals, because of aggressive case management, both
prior to hospitalization and certainly post, has reduced that
length of stay from a 13-day length of stay to now under ten for
AIDS cases in that region. It is a different number if you come
east in our experience.

The concern the California Blue Cross people identify
is that the AIDS support network is dying. It is dying literally
and it is dying figuratively, and one of the reasons for our
recommendation to you that we need to find ways as has been
expressed to find private and public partnerships to get after
thic, and not let that fall.

DR. WALSH: Well, the other thing is, with the IV drug
use population, there was only two percent or something compared
to New York which distorts also the numbers. But that is my
question. I am just nervous about how we are estimating costs so
we do not kid ourselves.

DR. CONWAY-WELCH: Mr. Creedon.

MR. CREEDON: Yes, I would like to address a question
to Dr. Winkenwerder. We have had many witnesses come before the
Commission and indicate that a relatively, well, 40 percent of
costs are paid by Medicaid. In other words, the hospital costs,
when someone goes into the hospital as an AIDS patient, the
actual cost that the hospital incurs are not paid by Medicaid.
Only 40 percent of those costs are paid by Medicaid. Now, --

DR. WINKENWERDER: Let me try to clarify something. I
hope that has not been based on any statements that have been
made about the 40 percent of AIDS patients that are served.

MR. CREEDON: No, this is the percentage of costs that
are being reimbursed. I guess, I wonder what your reaction is to
that, whether you agree with it. One of the concerns that
emerges from that is the hospitals with such a situation either
at some point go bankrupt or they shift their costs to somebody
else who is paying the bills of the hospital, and there is some
suspicion that the latter is taking place, at least to some
extent. I would like your reaction to these statements about
Medicaid not paying the really major part of the costs that are
actually incurred by the hospital in dealing with AIDS patients.

406

 

 
 

fo

DR. WINKENWERDER: Well, I am well aware of the fact
that those complaints have been made. The only way I guess I
could respond to that would be to say that if that were in fact
Lue case, tnen those hospitals that had large numbers of AIDS
patients ~--

MR. CREEDON: Like Houston, like the Houston hospital
for example.

DR. WINKENWERDER: Right. But I am thinking on the
other hand of the example of St. Clare’s Hospital in New York.

MR. CREEDON: Well, you know, as I mentioned --

DR. WINKENWERDER: This may depend upon the payment
rate in the state.

MR. CREEDON: Mr. Yezzo was here yesterday, and he did
not give us the impression that he was satisfied with the
Medicaid reimbursement formula for St. Clare’s. He did indicate
that he was able to manipulate in some instances, and that was
not his work, that is mine, the DRG systems so to cover a patient
for more than one DRG and thereby get more reimbursement than
some other hospitals have figured out that they can get.

DR. WINKENWERDER: One thing, we do not set the rates
for the states. That is something that the providers in the
states themselves could and probably should negotiate with the
state Medicaid agency if they feel like they are not being paid
enough. If those rates are higher, then we in HCFA pay. That is
just the way the system works. That is a discretionary decision.

 

MR. CREEDON: Well, now, as a Commission here we have
the challenge of making sure, evaluating whether there is
adequate financing available for the care that is needed, and
clearly the federal government is an important part of the
picture here. I do not know whether you saying well, this is not
our problem, it is a problem of the states, and so we have to
deal with each of the states.

DR. WINKENWERDER: No, I am not saying that. I think
that it is something that needs to be considered, and it is
something that needs to be evaluated, but I would also add that
let us not just focus strictly on one disease category, that is,
those individuals with AIDS.

MR. CREEDON: Well, this is our job though. This is
the Presidential Commission on AIDS.

407

 

 

 
 

 

DR. WINKENWERDER: I understand that, but in making
recommendations, this same argument might be applied to other
patients with serious and terminal illnesses who need high
intensity services.

MR. CREEDON: Well, you know, my own impression is that
the same perhaps, not to the same extent but that the same
problem exists with respect to both Medicare and Medicaid and
especially since the DRG system has been introduced, and I am not
criticizing the DRG system because I think you need to have a
sytem Wuece you do not give a blank check to every hospital in
the United States so I think it is a positive system, but unless
it is managed properly, it can cause other kinds of dislocations,
and there is a sense abroad generally, I think that that is what
has happened now. I mean, if you keep putting the screws down
and cutting the amount that is allowed down, then sooner or later
it will help. Do you want to comment on that, Mr. Thompson?

MR. THOMPSON: There are only 12 states, I think, where
Medicaid is paid by DRG’s. So the DRG issue in Medicaid is
important for only those 12 states. The problem is that it is
the states that set the reimbursement, and that reimbursement has
been historically low, and that low reimbursement may in the
future, I do not think it does now, but it may in the future,
make a difference, and to the access of that hospital by AIDS
patients. I agree with your statement, Doctor, that you should
not treat AIDS patients differently than other patients, and I
will quote the Admiral and I will say that maybe the harsh light
of this terrible disease is showing little wrinkles, warts and
sores in the whole medical care delivery system, including
Medicaid.

“Where I have problems is, I guess, is the part of the
standards that are set by the federal government and the part of
the standards that are set by the state government.

Historically, and in your own words, the federal people set broad
standards. I think they are too broad. Rather than allowing
imaginative tailoring as you suggested in yours to the states, it
also has the other side. The down side is they depress it. They
fool around with eligibility, they fool around with
reimbursement, and they fool around with the number of services
they offer, and that is going, those three things are going to be
critical in AIDS.

DR. WINKENWERDER: Let me respond to that. I think you
raise an important, very large philosophical question, and that
is the relationship between the federal government and the state
government. In a program like Medicaid, I would only remind you,
however, that this issue has come up time and again in Congress
and the Congress has not wanted to change that relationship, to
have broader central authority and that is really a decision that
would need to be made. There are changes in the law that would

408

 

 

 

 
 

need to occur. We do not have the authority to make those sorts
of decisions so I think it is a larger issue that you are
discussing, but I think it is very important.

CHAIRMAN WATKINS: Dr. Winkenwerder, there are ways to
influence in this world, and is there a display, for example, of
some of the, what I would consider to be from a person’s point of
view, inequities, from this extreme to the average to the most
liberal interpretation. Are there those available, and can they
be displayed in such a way that that becomes one of the obstacles
for equitable addressal of the issue across the nation, just as
something that we can display?

In other words, we do not have to say, we do not have
to direct, but when we raise certain things, it seems to be quite
inequitable, one to another, in the country. It seems to me that
is a legitimate role for the federal government to at least
Gisopiay, Saying, you know, we are the villains all the time, give
us more money from the federal government.

We think there are also some other issues, some other
ills out in the system that need addressal and here, for example,
is a display of how it is now allocated, for the same, what
appear to be the same cases. So there is another way to look at
it so I think it would be most helpful for the Commission to have
this thing more definitively presented, not with the idea you are
trying to hammer anyone, but to try to explain what is the real
issue we are talking about here, along the lines Mr. Thompson
just raised because I think that if we have gotten into a habit
of manipulating a system to achieve an objective, I think that
somehow the system needs to respond to that, the process needs to
be changed.

 

I think that is what Mr. Thompson was driving at. It
is far better for the institution to say, let us not allow that
kind of approach to be taken, let us try to fix the system a
little bit better and a little bit cleaner and influence it to
move along these lines that then do not demand the kind of
manipulation that we have heard presented to us.

DR. WINKENWERDER: Right. Well, I think it is an issue
that you need to consider. I do not have an answer for you with
regard to what you should do. There is another point, though,
that I would like to make, and that is that certainly part of the
reason, not all of the reason, but part of the reason there is
disparity in terms of what amounts of services and types of
services are offered, is the wealth that exists within a
particular state.

The state of Mississippi is not as wealthy as the state
of New York. It makes it much more difficult for that state to
come across with those funds. They are responsible for close to

409

 

 

 
half of the funding of the program, and I think those are trade
offs that are made within the particular states. I would remind
you, however, that in many of these states, and just in the last
two or three years, there have been extensions of eligibility to
pregnant women and children to bring more of them into the
Medicaid program.

MR. CREEDON: Many of the complaints we have had have
come from the major states such as New York, Florida, California,
not Mississippi.

DR. WINKENWERDER: Because the burden is going to be
greater in those states. But I would add that for every
additional dollar they are spending, we are spending 55 cents,
over half so we are certainly --

MR. CREEDON: We are hearing it from hospitals
themselves so they are saying we are not getting it, we are not
getting enough money to cover our costs.

DR. CONWAY-WELCH: Wait, may I interrupt just one
second. I know Mr. Thompson was going to reply at the same time
that Dr. Winkenwerder was, and then I think we need to clarify if
we have given you your two questions and then go to the other
cits Of the panel if that is acceptable. Mr. Thompson, did you
have a point to make?

MR. THOMPSON: No. I am pretty happy right now, to
tell you the truth, having straightened out that problem about
the balance between the state and federal government.

DR. CONWAY-WELCH: Thank you. Your second question,
Mr. Creedon.

MR. CREEDON: My second question relates to some of the
comments that have been made already that we should not
distinguish AIDS from other types of illnesses, and I would just
like to, in a way, ask why and in part it seems to me it is
different from most other types of illnesses that have come up
in, you know, in the last 25 or 30 years or whatever period of
time, and especially we have had a number of suggestions before
the Commission that for example, the eligibility for Medicare for
Medicare hospitalization payments perhaps be changed with respect
to AIDS patients, and I believe that Senator Moynihan has a bill,
and I do not know whether it has been submitted or not which
would do that.

But a number of people who have come before the
Commission have made the case that from the time AIDS is
diagnosed as AIDS until the people die, it is usually less than
two years that is required to qualify for Medicare payments, and
I guess there is an exception for dialysis now which was, I

410

 
 

 

assume, was decided as a policy matter that that was going to be
treated differently than other diseases because the
characteristics and the demands and the problems in relation to
it were different, and to some extent in the case of AIDS we have
something that is very different from anything that this nation
has seen before so even though it is a general proposition, you
might say well, we do not want to distinguish AIDS from other
types of diseases, and I think as a political matter, we may have
a great deal of difficulty distinguishing it because of the way
1t nas arisen but nevertheless, I would just like to hear a
little bit more about why not distinguish it if the qualities or
characteristics of the disease suggest that it should be
distinguished.

DR. WINKENWERDER: Since I was the one who raised that,
I will respond to that. I think this is a very critical and
important philosophical question that this Commission needs to
address. There are some aspects of AIDS and the HIV infection
that are different than other diseases, but the caveat that I
would add to that is that there are certain aspects of other
diseases that are unique and that people who have those diseases
can make the same claims. There are certain people with terminal
cancers that I know about that I have treated as a physician,
who could make the same claims.

So I think the question becomes,"is it wise public
policy to set aside or distinguish one group of individuals?" I
know that was done with end stage renal disease program but I
think it is a very thorny issue, and one that should be thought
about very carefully. We oppose doing this. We oppose setting
up any sort of disease specific program for people with AIDS
 ccause of the legitimate claims of those with other diseases.

Let me just add also that there is another issue here
that people are not always comfortable talking about with regard
to changing Medicare. We know about the Moynihan proposal, and
the Administrator testified last fall about this, and there is a
cost impact of the Medicare program of doing that. It is sort of
a shifting of costs from the private sector to the public sector,
and the cost to Medicare of doing that over five years would be
between two and eight billion dollars if that were done just for
AIDS patients to eliminate the waiting period.

If you were to say be more equitable about it, and do
it for all diseases, there is a very large cost impact, about $35
to $42 billion. I guess our thinking is if you were going to
change this waiting period or would consider that, that it ought
not be on a specific basis to any diseased group, and just
realize the cost impacts of doing that.

MR. PETERS: I would also like to comment on that. I
think our Plans, the 77 Plans across the country reflect regional

411

 

 
 

variation, local community attitudes on this. Our thinking when
we say to consider AIDS as any other disease is not a literal, or
to be taken literally, to the ninth degree.

What we imply and mean in that is that there are
existing technologies and techniques, for dealing with this
disease: home health care, case management. Those technologies
and approaches apply to AIDS. They apply to care and treatment
of other disease entities. There is clearly a difference with
respect to public concern and attitude and there may well be a
dramatic difference with respect to the cost and in time as we
learn more, we may well wish to approach it differently.

But I think our attitude is if we do that early and
segment it and isolate it, we will lose the value of those
support systems that currently exist. We will perpetuate the
rear that exists in some quarters and our resistance to help deal
with the subject. It may well be, just as mental health is
different than a surgical problem. Yes, those are different
diseases, but they are treatable within a broad context of a
health care delivery system. That is where we are coming fron.

MR. CREEDON: I think part of it is the question of the
dignity of the individual. I mean, here you are talking mostly
about younger people who die prematurely, who, many of whom at
least have been in the mainstream of life in terms of jobs and
that type of thing. Other than the IV drug users who are
probably all on Medicaid already, and the quality of care and the
social aspects of being a Medicare recipient rather than a
Medicaid recipient are different.

DR. CONWAY-WELCH: If we could go on to Dr. SerVaas.
Do you have any questions? You are going to give your questions,
okay. Dr. Lilly?

DR. LILLY: I would like to go back to this question I
was trying to get straight before. I am still not straight on
it, Mr. Rust. It does seem to me that there have been PWA’s who,
having lost their job and having gone on SSI, did later on have
to go into a different program which I thought was called SSD,
and I think you mentioned something about Title XVI or XVIII,
under which the amount that they received actually increased by a
relatively small factor, but it was enough to keep them from
getting Medicare or Medicaid, I am sorry.

MR. RUST: We have a five month waiting period that a
person is out of work before their Title II benefits can begin to
be paid. They can apply during that period of time, but the
benefits do not take effect until after the person has been
separated from the work force and is disabled for five full
months. If they have had reasonably good attachment to the work
force, they have earned a benefit through Title II, which is an

412

 

 
 

 

entitlement, an insured status, but they have to wait five months
to get that benefit.

Some people, because they have limited resources and
limited income, may have spent a great deal of money on their
illness up to that point may be eligible for Title XVI during the
five month waiting period. So they will come on the program
without a 5 month waiting period. They get a presumptive
disability determination and receive a check right away. They
will get SSI benefits for up to that five month period. Then
when the Title II benefit kicks in, it puts them above the income
levels and makes them ineligible for Title XVI. At that point,
in many states, they would lose their Medicaid eligibility, and
start into that 24-month waiting period to go on Medicare.

DR. LILLY: So it is a 24-month period without health
benefits then basically.

MR. RUST: That is correct. The presumption in our law
is that Title II is aimed at people who have a long attachment to
the work force. It is an entitled right, just like you are
entitled to your retirement benefit under Social Security. The
presumption generally is that those people have had health
insurance tnrough their employer or have it through private
mechanism. That is my understanding of what the legislative
history is for the SSDI. We recognize that the Title XVI, the
Supplemental Security Income person, is the opposite. That is a
person of limited income, limited assets and resources. That is
why they are entitled to the presumptive disability determination
and to the immediate Medicaid coverage in most states.

But none of us are aware, neither I nor those with me
today of a mechanism other than that which would cause them to
lose benefits. But we do have a cohort of people who do come on,
get Title XVI payments until Title II kicks in. When Title II
kicks in, it pays them enough cash every month to render them
ineligible for Title XVI, which may affect their Medicaid
coverage.

DR. CONWAY-WELCH: Ms. Gebbie?

MS. GEBBIE: Can I ask a follow up to that before I ask
my question since you are keeping score so carefully? Could you
provide us some information on the relative numbers of people
that fall in those various categories? Not sitting here today,
wut as a follow up?

MR. RUST: Yes.

MS. GEBBIE: Since for a lot of the community-based
organizations, that enrollment process is held out as one of the
answers to everything, if in fact, part way through it, it

413

 

 

 
 

 

becomes a non-answer, I think it is important to have some sense
of the magnitude of people involved in the various categories.

MR. RUST: We have two programs with two very different
orientations, but we have three categories of people.

MS. GEBBIE: Well, however you categorize them, if you
could give us some sense of where they fall within that.

MR. RUST: Some people get Title II only, some get
Title XVI only, some get concurrent benefits from both. We will
provide the Commission with some information, but those numbers
change but we will provide you a break out of that.

MS. GEBBIE: I suspect there is also an overlay of
whether or not the state in which they reside has a medically
needy program in addition to basic Medicaid and how that kicks
in, so we may never find the answer so thank you for trying.

MR. RUST: We will provide you with additional
information, we will try.

MS. GEBBIE: Okay. Let me go to Dr. Winkenwerder with
a question that I think is a prelude to some of our later finance
discussions and again is one that may need some work on between
hearings and that has to do with the experiences of states which
attempt creative programs, and then run into the processing of
waivers to do things differently. You have expressed very
strongly a view that I think many of us hold that there are some
problems if you set up AIDS as a unique disease because of the
experiences of people with AIDS are not always all that different
from others.

Yet, it is my understanding, from talking to some
Medicaid people from various places that the getting, that
waivers are necessary from the basic package in order to provide
some of the case management and community based services that we
have been hearing so much about, and that for whatever reasons,
it is hard to get waivers. Once you have gotten one, you cannot
keep it, and that it sometimes takes a year to get one and that
now a whole new special set for AIDS home based care are being
processed as a separate category of things which is really the
special case that you just argued against. Can you comment on
that, and to the extent you cannot comment on it today, would you
at least commit to following up for us?

DR. WINKENWERDER: I can comment, and I am very glad
you have raised the issue because I am happy to report that there
is a lot of activity in this area. I would challenge the remarks
made earlier that somehow we cannot respond within the Medicaid
program. There are waivers of the usual Medicaid requirements,
home and community based waivers and these waivers are available

414

 

 

 

 
 

to address the needs of certain populations of individuals, and
they have been available to states for those different
populations, as you well know being from the state of Oregon, for
the last three or four years I think.

MS. GEBBIE: With great and continued argument with
OMB, I might add.

DR. WINKENWERDER: With changes in the law, right. But
with regard to AIDS and other individuals with illnesses that
might be similar, there has been a lot of action. The states of
New Jersey, New Mexico, and Ohio, North Carolina and Illinois,
have all received, been granted waivers within this last year so
I would challenge your assumption that there is a great
difficulty.

This may have happened in the past but we stand ready
to expedite these waivers, whether they be for groups of
individuals with AIDS and ARC or for those who are disabled. The
waivers in North Carolina and Illinois are for those that are
disabled but as it has already been said, most of the patients
with AIDS that fall into the Medicaid program, are disabled so a
large number of them are covered. Two other states right now are
pending approval, Hawaii and California. We have had about eight
or ten other states tell us that they are very interested in this
concept. We think this fits with the concept of giving states
flexibility, and working within the Medicaid program. It does
come close to the concern about disease specificity that you
raised, but I think that we are comfortable with it and we are
supporting it as the way to respond within Medicaid.

The other thing I would add is that states can change
their plans for Medicaid to include case management of services.
Again, several states have done this including Massachusetts, New
Hampshire, West Virginia and Washington. Some are specific to
AIDS patients, some are not. Hospice care, we have approved
hospice care in three states, Florida, Kentucky and North Dakota,
aud many ocner states are submitting applications for these
waivers right now as we speak, and we are moving these things
through as quickly as we can.

MS. GEBBIE: Could you provide us with a chart that
shows, by every state, by all those categories of services, who
is providing what, either for all patients or for those only with
AIDS and ARC or whatever.

DR. WINKENWERDER: We would be glad to.

MS. GEBBIE: That would be helpful.

DR. CONWAY-WELCH: I see another grid coming on,
Christine. Mr. Thompson, then I realized that I gave up my

415

 

 

 
 

question in this process so I am going to retrieve a couple. Mr.
Thompson.

MR. THOMPSON: The question is that some of these
services granted by waivers were already granted by some states
so if you want, for example, to be concerned about hospice care,
you would have to include Connecticut which gives hospice care
under Medicaid but did not apply for a waiver, they just did it.

MS. GEBBIE: That is why I said by service. I did not
say by how you got it. I would like to see by service by state,
what is available.

DR. CONWAY-WELCH: I would like to address a question
to Mr. Rust, and then we will go to Dr. Walsh. We have heard
from patients who have AIDS about some problems with
confidentiality and I would like to get your idea if you feel
that they are real problems, or if they have been solved or if
perhaps there was a misperception. Issues of confidentiality in
terms of, you mentioned before that there are thousands of people
taking thousands of phone calls in terms of requests for
information. One concern we heard was the receptionist answering
the telephone or whatever when someone calls in, asking questions
about AIDS, particularly in a small area or rural area. How is
that managed or is that a problem from your point of view or not?

Along those same lines, the idea of some people
expressed concern about the actual storage of the material in the
files, not that you would divulge them, but that they were simply
stored where they were rather available to clerks and to people
working in the area who also lived in the area who also may or
may not know the people involved, and the other concern that was
expressed at some times was that somehow their Social Security
number and the fact that they were asking for information on AIDS
benefits, etc., somehow was going to be hooked together, and the
whole issue of confidentiality, not through divulging but simply
through happening to come out was a real problem, again,
particularly in the smaller and more rural areas. Could you
comment on that?

MR. RUST: It is an area that we look at all the time,
not just with AIDS, not just with medical evidence. The Social
Security Administration knows a great deal about a lot of people,
their income, benefit status, dependency and so forth.
tucrefuce, we feel it is extremely important, as I indicated in
my testimony to maintain very high standards of confidentiality.

We have 75,000 employees nationwide and in the
Disability Determination Services, we have over 12,000 state
employees that we pay 100 percent of all their operating and
Salary expenses to work for us. So, there are a lot of people
involved and we are dealing with millions of claims a year. We

416

 

 
 

have standards for the release of information. We enforce them
very vigorously. It is a part of our training. We have security
requirements for our folders, both in our hands and in the hands
of our agents the DDS’s who are not direct federal employees.

I am not aware of any particular instances, but what I
am sort of saying is that something can always happen when you
are dealing with 2.5 million claims a year. We do our best to
train our employees and to train those people who work for the
states, to understand the confidentiality requirements and to
enforce them very vigorously. We would respond vigorously if we
found breaches of confidentiality. There are work groups right
now in HCFA and Social Security and PHS and elsewhere in the
Department where we are constantly looking at whether our
confidentiality procedures are adequate, whether the training is
right, whether we need to do more.

When you get back to the more fundamental question, at
some point they do have to divulge to a Social Security employee,
the information: who their doctor is, what the allegations of
disability are and so forth. The teleclaims centers are often
not in their community, which is another thing I would mention.
The teleclaims center with the 800 numbers and WATTS lines are
more centralized, around the country so there may be a little
less of a problem for a person in a rural town.

If he is dealing with a teleclaim, that teleclaim
center may well be in the next state or a long distance away. It
is not necessary for him or her to go to the local district
ortice in their neighborhood where their friends and neighbors
work and give the information at that point. But, if he or she
does, those employees are obligated to preserve confidentiality
it is regulatory and statutory. There are prosecutorial things
that can be done for the divulging of that information.

DR. WINKENWERDER: Let me just add a word or two about
this effort to do what can be done about the issue of
confidentiality. Right now, there is an organized effort within
the Department of Health and Human Services which Mr. Rust has
alluded to which involves all departments. This is not just sort
of an ongoing, haphazard process, but one to review all
confidentiality provisions within the Privacy Act, the Social
Security Act, etc., and to report to the highest levels of the
Department about what can be done or should be done to insure or
improve the current confidentiality laws.

DR. CONWAY-WELCH: ‘When will that report be out?

DR. WINKENWERDER: I cannot tell you, but the effort is
ongoing right now.

417

 

 
 

 

MR. RUST: My staff advises me that we also are not
aware of any specific claims or problems that have been brought
to the Office of Disability’s attention. If the Commission is
aware of any incidents where this may have happened, we would be
interested in tracking that down and give you an explanation of
what happened, what broke down.

Unrelated to AIDS the other day, I got a call from
someone who said a disabled person called our District Office and
said, I have lost a leg. It is very difficult for me to get into
the office, is there another way for me to apply, and they were
told no. That is simply not right. We checked it, and someone
just made a mistake that can happen. We tracked back, found the
employee who had given them the wrong information and made
certain that that employee understood the rules and regs so that
it will not happen again. If that does exist, we would be
interested in knowing so we can take corrective steps.

DR. CONWAY-WELCH: The other question is I share Dr.
Lilly’s concern in terms of clarifying problems that we have
heard about SSI and SSD and the fact that it is a fairly
complicated set of rules and issues. What happens to someone who
is sick and who goes on SSI and then gets better and goes back to
work anc goes off SSI but then gets sick two days later and has
to stop working. How does that work in the system when they can
have exacerbations and remissions very rapidly?

MR. RUST: Bill Ferguson, is a Division Director, with
SSI under a different Associate Commissioner so I would rather
defer to Bill, if I may, because it is an eligibility question in
another program that is not directly under my supervision.

DR. CONWAY-WELCH: Thank you. Could you give your name
and title, sir, please.

MR. FERGUSON: Bill Ferguson. I am Director of the
Division of Payment Policy, Office of Supplemental Security
Income. If a person is on SSI disability, and they go back to
work, they are actually encouraged to go back to work, and their
earnings are not sufficient for them to go above what we call the
break even point, they would continue to be eligible for an SSI
benefit. If their earnings go up high enough that they can no
longer get an SSI benefit, but up to what we call the Medicaid
threshold, they can continue to be covered for Medicaid even
though they are no longer getting an SSI check. So, if the
person then stops working, they would revert back presumably to
the regular SSI status without any break in eligibility, assuming
that they did not go back to work and make $30,000 or $40,000 a
year. But if they have relatively low earnings, they can still
maintain their continuity in the systen.

DR. CONWAY-WELCH: Thank you. Anyone else? Dr. Walsh?

418

 

 
 

 

DR. WALSH: I was going to say one of the dangers of
sitting next to Chris Gebbie is that she always asks the
questions I am thinking of. But I did want to, I guess, ask also
when you consider the submission of some of the information for
which she has made requests, that those of us who are perhaps
closer to this issue because of our relationships with the Agency
in Washington, are aware that many of the things that have been
brought up at these hearings have already been hashed around at
HCFA, hashed around SSI, discussed and so on, and that policy
decisions have more or less been made or been determined, and if
there was some way that we could have some of that available for
the whole Commission, I think it would be very helpful because
just as John Creedon is worrying about the reaction to Moynihan
or D’Amato, or one thing or another, these are things that you
have already kicked around and have discussed even with the
Congress, have valid reasons for why they can or cannot be put
in, and it would be very helpful in the preparation of our report
if we knew the background so that we do not say something which
we know has already had a decision made on it that is not going
to do any qood.

The aspect of, for example, our concern about
recognizing number one, that we are an AIDS Commission and
therefore that is what we are supposed to be worrying about.
Yet, you cannot separate one disease or one group of people from
all the rest of the country when it comes to health care or
Medicare or Medicaid, forces us to sometimes cross the line.

But I would hope that you would not get the impression
that in any way we are in favor of advocating greater and greater
federal intrusion into the state, and yet at the same time, we
know that the states would like to get every dollar you can give
them with no regulations whatsoever, and with a license to do
anything they want with it, and that would be an even greater
mistake, for us to think that every request from a state is a
valid request, and again these are the things which you are
getting all the time and have valid arguments or at least you
have a position as to why some of this cannot be acquiesced.

If we could have, be privy to some of the reasons for
obvious questions. In other words, what you could ask yourself,
just from the list of things that have been given, and what your
answers are, I think it would help us immeasurably to understand
that you are trying to cope with a very difficult situation but
that when you are modifying Medicare and Medicaid, you have got
to worry about those 37 million uninsured, you are worrying about
uncompensated care, you are worrying about all sorts of things
when you are going to modify these laws, and the impact of
modifying what is the impact. Do not tell me now. Let us know.

419

 

 

 
 

 

The impact of modifying Medicare or Medicaid in some
ways, when you know that the minute you modify Medicare or
Medicaid, Claude Pepper or somebody over there will be wanting
you to modify it for something else and very sincerely and very
validly, but once you break the barrier, where does it all start?
We ennid end up as one of our witnesses suggested, with national
health insurance if we are not careful, and I just wanted to have
you give us some of that information and share it with us.

DR. WINKENWERDER: We would be glad to provide all of
that information.

DR. CONWAY-WELCH: If you could share that with us in
writing, that would be helpful. I have one other question. I
think Ms. Gebbie has a question, and then Mr. Chairman.

Could you clarify for me the definition of disability?
Is that the actual diagnosis of when AIDS occurs or is it when
someone is too sick to work? The reason I am asking the question
is that sometimes the diagnosis itself forces someone to have to
leave their job or to have to lose their residence or whatever
while they are still perfectly capable of working and places them
in very distraught circumstances. Again, that is a question that
we have heard from people with AIDS as we have gone through this.
Could you clarify whether the disability comes with the actual
diagnosis itself, or whether it comes when you are too sick to
work?

MR. RUST: Right now we are saying that if the person
has AIDS as defined by the Center for Disease Control, and that
definition includes the wasting syndrome, dementia, certain
opportunistic infections and the presence of certain types of
malignancies, we take that to equate that the person meets our
listings for disability.

The only factor that would alter that would be if he or
she is working. If they are working, we would not allow then.
But as long as they are not working, and have fully developed
AIDS as defined by CDC, we say that that automatically entitles
them to a determination of disability for medical reasons and
they are granted benefits.

DR. CONWAY-WELCH: So if they are diagnosed with AIDS
and they could continue to work, there is really, the reward
system to continue to work is not really there in some instances.
They would be better off simply to take the fact that they have
the diagnosis and then take the benefits that occur. Am I
misinterpreting that?

MR. RUST: Not necessarily but I think it would vary
rrom individual to individual in terms of how much earnings they
have and their desire to continue working, I think you would have

420

 

 

 
 

 

a lot of factors there, such as continued insurance coverage. A
person who is Title II eligible, has been earning at a fairly
high level of income, the chances that he or she will be able to
get Medicaid are not great.

You have that 24-month waiting period for Medicare I
think if they were still able to work, they may well choose to
work for the greater income. The average Title II benefit per
month is $508 and it is a little higher for people with AIDS
because they are younger, it is $535. The point is they would
have to equate the benefit they would get, the triggering of the
24-month waiting period for Medicare, versus the advantages of
continuing to work and be active to keep their health insurance
and so forth.

DR. CONWAY-WELCH: So if someone is sero positive and
loses their job or their apartment or whatever, but they do not
have, they are sero positive but they have not been diagnosed
with AIDS according to the definition that you have just shared
with us, they do not quality then for any SSI benefits, is that
correct?

MR. RUST: With SSI, there is a very tough test of
income and assets and resources. You do not have that with Title
II. If the person does not have fully developed AIDS as defined
by CDC, we would run them through the evaluation steps to find
out if those impairments that they do have are severe enough to
meet our listings, and then make a determination to allow or not
to allow. And, by the way, if a person applies and goes through
the sequential evaluation steps and is denied, we deny about 31
or 32 percent of the ARC cases, for instance, that does not
preclude the person who maybe three months later has his
condition worsen, from turning around and applying again.

DR. CONWAY-WELCH: Thank you. Ms. Gebbie?

MS. GEBBIE: A question for Mr. Peters. I do not want
you to feel lonely. I always get nervous about dollar amounts
that are not quite comparable with other ones, and I ama little
concerned about the numbers you show. You quote some information
from Blue Shield of California with patient care costs ranging
from $7,500 to $110,000, and I want to be really, really clear
whether those were actually patient care costs or whether those
are benefits paid out by Blue Shield of California.

MR. PETERS: Those are claims data.

MS. GEBBIE: That is a critically different point in
being able to compare that information. Would you be able to
check with Blue Shield of California or would you know whether
they have information related to those numbers that could help us
put them in perspective, such as were these from diagnosis to

421

 

 
 

 

death or late from diagnosis until loss of insurance and any
information about uncovered costs that were incurred by those
same patients?

MR. PETERS: We are conducting a survey of our plans
right now, and one of the comments I would make to the Commission
is as that information and data profile is available we will be
happy to share it. It will contain information similar to that
and in some cases, specifically to that.

MS. GEBBIE: Thank you.
DR. CONWAY-WELCH: Mr. Chairman.

CHAIRMAN WATKINS: Just one question, probably to Dr.
Winkenwerder and Mr. Rust. In the gray zone of uncertainty on
ARC, clinical symptoms of the HIV positive individual not yet
defined as AIDS under the CDC modified extended new rules, I
think it is going to be some time in the future that gray zone is
going to be clarified one way or the other. I think it is very
difficult today for a lot of people to find the transition point
where, from the human’s point of view they are properly supported
because of the burdens that are really on them out there even
though they have not gotten to the full blown AIDS as defined.

The question I have is can you be very definitive yet
about what it has meant already in the reimbursement system to
have had the extension picking up wasting and dementia, for
example, as a cost. I am sure you have done some kind of cost
estimate analysis of that, what it was going to do to the system
before CDC made that estimate or perhaps as a part of that study,
and then what is the next event.

In other words, what is the logical transition now to
something else that is picked up where we are more willing
perhaps to extend it again on the basis of local determinations
of significant impact on the individual that is HIV positive and
not clearly defined yet, recognizing they have the kind of
classic problems that will perhaps eventuate into AIDS.

If we are migrating in that direction, do you have some
kind of a cost analysis of what might transpire as that begins to
be extended further over time? Certainly for what you have
already done, wasting and dementia, extensions, can you give us
any more impact of what might happen on your programs if the
definition of AIDS changes even further to what many of the
clinicians and the people in the field feel is a more human
approach to support in those that clearly have the disease
pending right down the street.

MR. RUST: The impact was very minimal for us in both
the disability insurance program and the Supplemental Security

422

 

 
 

 

Income program. Almost all of the wasting syndrome and dementia
cases which previously had presented to us as ARC rather than
AIDS were allowed so the impact, the financial impacts on the
trust fund or on general revenues was very minimal.

What it did do when CDC changed their definition and we
changed our guidelines accordingly was it made people with those
two categories of symptoms eligible for the district office
presumptive disability determination. It added a couple of
months of benefits -- but those people almost uniformly were
allowed when we counted them as ARC. We processed them through
the system, we determined that they were disabled. We allow 68
percent of all of the ARC cases that came through the system, and
those figures reflected people with dementia, people with wasting
syndromes so it has had very minimal impact in terms of people
who otherwise would have been denied, now being allowed.

The dollar impact was very small because it simply
entitled them to their payment quicker but that would be a few
hundred dollars for a couple of months before their benefits
would have kicked in anyway. The impact on our trust fund has
been very small.

DR. WINKENWERDER: To that end, since our eligibility
in Medicaid for this group of patients, AIDS patients, sort of
plays off what they do, we have not, at least as far as we know,
seen a big impact because of this change because these people
were --

CHAIRMAN WATKINS: You say you have not?

DR. WINKENWERDER: Have not because these people were
falling into the Medicaid program because they were getting, most
of them, as Mr. Rust has said, were getting eligible on SSI.

Now, there will be, I would say, I think you are raising a very
good point.

CHAIRMAN WATKINS: Is there, in other words, a
definition of when presumptive disability becomes more of a
policy that can be better defined and be more sensitive to those
that really do need financial help earlier, particularly as we
get into continuity of care from HIV positive determination,
throughout the counselling, you know, the processes that have to
take place, the tracing, so that the people can feel that they
are being supported at some point in time when perhaps those
costs that may not be there now because we do not delivery that
kind of care may begin to pick up and I am just trying to look
ahead to the next event.

DR. WINKENWERDER: Let me respond by saying two things.
One is I think you are very right that there are people who have
the infection, that have some symptoms, that are probably seeking

423

 

 
 

 

and getting medical care but that have not gotten any
"diagnosis". In some cases those individuals may not even know
they have the AIDS virus so that is true, that is a cost that may
have led to some underestimates of current cost projections. We
do not know the extent of that.

But the other point is that regarding disability, I
think what is so problematic and I sympathize with the Social
Security Administration’s dilemma, is just like cancer, it is
very difficult, because people respond differently, because there
is great variability with any individual with a disease and how
the disease progresses and how they respond to therapy and so
forth. It is extremely hard to say all these people with this
given virus infection or this given diagnosis are disabled.

Disability is an arbitrary sort of definition and we
try to make diseases fit. For the most part, AIDS and ARC
certainly fit, but to extend that all the way to any HIV infected
person, I think we just cannot do that because it is clear that
there is this large gray zone. I would be skeptical that it is
going to get a whole lot clearer in the future. I think it will
get somewhat clearer, but I think there is still going to be a
large gray zone.

CHAIRMAN WATKINS: Is there any effort to focus a study
on that gray zone, to look ahead a see if, as we provide more
opportunities for care that you might be more ready to take a
look at that, a hard look at the more sensitive, presumptive
disability regarding this? Is that a possibility?

DR. WINKENWERDER: I think that is a possibility, and I
think those --

CHAIRMAN WATKINS: Do you think that is a good idea?

DR. WINKENWERDER: I think it is a good idea, that we
should be looking at them.

CHAIRMAN WATKINS: Let me ask you a related question
then. It is my understanding from data that we have that up to
half of the children who die of AIDS have never met the CDC
definition of AIDS. Whether that is true or not, I do not know,
but if that is the case, and usually that could be a family
related set of issues, what is the provision in that particular
situation for the perhaps the mother with AIDS, the infant with
AIDS, where half of the infants do not seem to qualify. Is that
your understanding of the situation right now?

DR. WINKENWERDER: Just a moment, I do not know the
answer to your question.

424

 

 
 

CHAIRMAN WATKINS: Is Medicaid still allowed under
other family compensation programs, and is that adequate to cover
both mother and infant?

MR. RUST: People often become entitles to Medicaid
through our disability process so let me take a shot at that
first, and then Dr. Winkenwerder can add his thoughts. We think
we are covering 70 plus percent of the children with AIDS through
the Supplemental Security Income program. Any person who
presents himself or herself to the Social Security Administration
and alleges the disability, we will run through the process.

We will do the medical development, the work up of the
case so a person does not have to wait until his doctor or her
doctor says, you have CDC defined AIDS to apply to us. I would
think in some of those cases the parents may not bring the child
in or may not understand that they can do so. We evaluate
disability under 13 different body systems. We have people
coming in with cardiac, respiratory and mental and a whole lot of
different conditions. We develop all of those cases, and make a
disability determination. So you do not have to necessarily fit
any definition exactly.

CHAIRMAN WATKINS: For infants for example, meeting the
cdc strict definition of AIDS is a different issue? It is
handled differently because of the nature of the pediatric AIDS
problem?

MR. RUST: I think they probably are. A lot of people
who have cancer, who have terminal cancer, would be eligible for
Social Security disability benefits if they applied for them.
Most do not. We are not sure why most do not. I think you have
the same question again in terms of people with AIDS or people
with children with AIDS in terms of what they understand or what
their family circumstances are or what is covered by their own
insurance. There can be a lot of dynamics in terms of when
people come to us and why they come to us at that particular

time.

I am just simply saying that anyone, regardless of
income can present themselves to us, can make the allegation that
they have a disability of any type, and we will do the necessary
medical development to decide whether or not they meet the
statutory standards of the Social Security Act so they do not
have to wait until their doctor says, you have now reached a
certain stage, you can apply.

People will die from ARC. People can develop the
symptoms of ARC and die of it without ever progressing, as I
understand it, to the full CDC definition of AIDS. The point is,
they do not have to wait for that to happen to apply for
benefits. When they are seriously impaired, they can seek

425

 
 

 

benefits, and if we allow them, then that puts them into the
mechanism for either Medicaid or, down the road for Medicare
coverage.

DR. WINKENWERDER: For those that do not qualify
through this mechanism to the extent that they are eligible low
income individuals, mothers with children who are on the Aid to
Families with Dependent Children, they are categorically, that is
automatically, eligible for Medicaid benefits so many of these
people are covered. That is not to say there is not a gap, that
there might not be a few individuals who fall through the gap, so
to speak.

CHAIRMAN WATKINS: Would you send us a letter, Dr.
Winkenwerder, on taking a look at this difficult area that I
called the gray zone, and let us know your thoughts on it
specifically, what you think could be done, could be studied in
that area, and what might make some sense so we could have your
specific input on what that might be and what it might entail,
and do you think, after having given it some thought, it makes
sense to do something like that.

DR. WINKENWERDER: We would be glad to. I have not
been asked this question, but I just wanted to respond to
something that was said earlier to let you know what our thinking
is about it. We focused most of the discussion on the public
sector side, and understandably, being as that is who we
represent.

But with regard to the private insurance, private
sector side, I just wanted to say that we support this concept
that has been alluded to by Mr. Peters of some sort of mechanism
to pool the risk, such as state risk pools, that could maintain
private insurance coverage for individuals so they would not
necessarily have to fall into the public welfare system and spend
down their assets to get there. We think that this is an
important concept. There are some problems why these risk pools
have not worked in some states, because of the lack of having
broad enough funding, but we support this idea.

CHAIRMAN WATKINS: I would like to close now with --

DR. CONWAY-WELCH: As the Chair on these particular
hearings, I would like to recognize the physician who is on loan
to the Commission from Johns Hopkins. He is a researcher and he
has been invaluable to us as a consultant to the staff. Dr.
James Baker, would you just stand up so we know who you are.
Thank you very, very much for your time.

CHAIRMAN WATKINS: Dr. Baker came to us as a volunteer
at our request to come in and give us a hand with day-to-day
technical issues, clinical issues. He has brought with him a

426

 

 
 

 

group of six or seven additional clinicians, all of whom we
coordinated through the American Medical Association of the
Baltimore-Washington area that are here as often as we need them
to give us day-to-day advice on the Commission.

I think many people do not realize that not only do we
have qualified medical doctors on the Commission itself, but we
also have day-to-day advice from clinicians with hands-on
experience on the whole field of AIDS that are highly respected
within the American Medical Association so I think it is a good
point to bring out.

I would like to close then by saying that one, I would
like to point out that this is only our first look at financing
and insurance. Obviously, budget and cost are going to cut
horizontally across all of the issues we talk about so we will
talk about them in each of the hearings but, for the record, I do
not want to leave anyone with the feeling that we have closed out
in any way the issue of financing and insurance and where it
might sit in priority on any of the specific areas that we have
discussed during this or other hearings. This is particularly
focused on care obviously. We will be discussing in April all
financing and insurance issues and hopefully by that time we will
have a better perspective from the individual hearings on how
these might dovetail together and begin to give us a feel for
where priorities might be set as we move towards our final
report.

The issue of health care for persons infected with HIV
is one of the primary concerns that this Commission faces. Over
the last three days, we have heard testimony from a wide array of
experts about issues surrounding access to care, costs of care,
quality of care, for both adults and children. We have also
heard very moving statements from several persons whose lives
have been ravaged by AIDS, and who came before us in a courageous
and touching manner.

The Commission will now move forward with its work of
formulating recommendations to the President, addressing what can
be done to improve and enhance health care delivery to persons
infected with this virus to meet their needs both now and in the
future, and we have dedicated ourselves to this task, and to make
such a report by the end of February. Our next set of hearings
will be February 18, 19, and 20, in New York City on the issues
of basic research and drug and vaccine development, and until
that time then, we stand adjourned and we thank all of you for
staying with us this afternoon. It has been extremely helpful.

(Whereupon, at 4:40 p.m., the hearing was adjourned.)

427

 

 
 

 

APPENDIX

 

 
STATEMENT
DAVID N. SUNDWALL, M.D.
ADMINISTRATOR
HEALTH RESOURCES & SERVICES ADMINISTRATION

U.S. PUBLIC HEALTH SERVICE
DEPARTMENT OF HEALTH AND HUMAN SERVICES

Thank you for this opportunity to appear again before the Commission.

I am David Sundwall, Administrator of the Health Resources and Services
Administration (HRSA) in the Department of Health and Human Services. You
have asked that I present an overview of the Federal interventions
conducted by-my Agency in the fight against Acquired Immune Deficiency

Syndrome (AIDS), and resulting recommendations for your consideration.

As our name indicates, HRSA focuses on resource development and service
delivery. Thus, our AIDS initiatives are designed to help alleviate the
inadequacies of both health resources and services by moving the care and
treatment of persons with AIDS, with AIDS related conditions, and with
Human Immunodeficiency Virus (HIV) infection, into the mainstream of our

primary care system.

In the time allotted, I will describe briefly the HRSA AIDS activities,
and discuss the recommendations we would encourage you to consider. These
recommendations rise from the work of my Agency on three major AIDS
initiatives, and from our year-long work with the Intragovernmental Task
Force on AIDS Health Care Delivery. I chaired that Task Force at the

request of Dr. Robert Windom, Assistant Secretary for Health.

 

 
 

 

HRSA AIDS INITIATIVES

In addition to our work with the Task Force, HRSA has three major AIDS

initiatives: (slide)
THE AIDS REGIONAL EDUCATION AND TRAINING CENTERS (ETC)

Since Dr. Sam Matheny will be talking with you tomorrow on these
health professions training centers, I will only emphasize that the
need for AIDS related training will continue, and must be met through

private and public actions such as the federally funded ETCs.
The remaining initiatives are:
THE AIDS SERVICE DEMONSTRATION GRANTS
THE AIDS DRUG REIMBURSEMENT PROGRAM
I'll review these for you briefly
AIDS SERVICE DEMONSTRATION GRANTS
We have awarded $25.3 million to provide 3-year support for 13 AIDS

Service Demonstration Projects. These are located in metropolitan areas

with a high incidence of AIDS (slide)

 

 
These projects are important because they addréss’a critical challenge we

face in caring for AIDS patients -- coordinating medical and related

services into a SYSTEM of care. Grant recipients are required to: (slide)

*identify unmet service needs and take steps to meet those needs

*provide optimal integration of community resources through

effective coordination

*ensure continuity of services through effective case management

*reduce the overall cost of providing medical services for AIDS

patients by providing alternatives to hospital care

In addition, because minorities are disproportionately represented in AIDS
cases, grantees are also required to focus on the needs of minority

populations.

As these demonstrations progress, we will look at the ways in which
service and administrative components are linked. For example, within the

service areas, project components include (slide):

*tambulatory care, such as counseling, psychosocial support, and

diagnostic services

tresidential or in-home care which may embrace long-term care

facilities, hospice services, and home health services

 

 

 

 
 

 

*case management services

*linkages with hospital care

*non-medical support services, such as running errands or

shopping and cleaning for non-ambulatory AIDS patients

*pediatric services, where applicable

Administrative components (slide) of these projects are designed to reach
out to the community to integrate care, resources, and relationships. For
example, area advisory committees and linkages with other AIDS programs at
national, State, and local levels (i.e., the Robert Wood Johnson
Foundation) are vital to achieving integration of AIDS care. I stress
that it is not our intent to support the development of a separate system

of care for AIDS patients.

Added information on each of these funded projects has been provided for
the record for these hearings. Commission members may already have read
about the demonstration projects in the December issue of Health Link, a
magazine for health educators and providers. HRSA supported the

distribution of 15,000 copies of the special issue on AIDS.

 

 
 

 

AIDS DRUG REIMBURSEMENT PROGR, .1

This is the last HRSA initiative I will summarize (slide). Last year,
Congress reacted to the need of low-income AIDS patients who were unable
to purchase the newly approved drug A2T (Azidothymidine). The importance
of AZT is that it appears to prolong the life of some individuals with

AIDS, and is currently the only drug so proven.

The congressional appropriation of $30 million was designed as a one-time
source of funds to be awarded to States and territories to reimburse for
drugs approved by FDA as prolonging life for AIDS patients. Low-income
individuals (as defined by the individual States) not covered by State
Medicaid programs or other third-party payors, or whose State Medicaid

program does not provide this drug coverage, are eligible to participate.

HRSA is responsible for distributing these funds to the States. As of
November 2, 1987, grants have been awarded to all 50 States. Grant
amounts were based on the percentage of AIDS patients in the State as
compared to the national figures for AIDS patients as of July 2, 19387.
For those States with fewer than 10 AIDS patients, however, a minimum

award of $30,000 was made.

 

 
 

 

RECOMMENDATIONS
At this point, let me suggest four recommendations for your consideration:

RECOMMENDATION #1: INCREASE AND IMPROVE EDUCATION FOR HEALTH
PROFESSIONALS IN THE DIAGNOSIS, CARE, AND COUNSELING OF HIV-INFECTED

INDIVIDUALS.

This critically important need would be met, in part, through emphasis on
curricular development and training, the distribution of educational
materials and an emphasis on continuing education, including provision of
the most up-to-date, accurate materials available on the care of persons
with AIDS. Among these materials, we recommend that a Task Force prepared
document, "Evaluation of Adult Patients Infected with the Human
Immunodeficiency Virus," be distributed to all health professional
organizations for distribution to their membership. We in HRSA are
concerned that staff in federally-supported health care projects, such as
community health centers, be trained in the diagnosis and management of
AIDS patients, and are beginning to address this issue. We would urge

your support for this initiative.

 

 
 

 

 

RECOMMENDATION #2: ENCOURAGE THE EXPANSION OF INTERMEDIATE AND LONG-TERM

CARE (LTC) FACILITIES WHICH WILL ACCOMMODATE THE NEEDS OF AIDS PATIENTS.

The Task Force recommended that the Department of Housing and Urban
Development (HUD) 232 FHA Program of Mortgage Insurance for Nursing Homes
and Related Facilities serve as a mechanism to meet the need for
alternatives to hospitalization for AIDS patients. In addition, in
December, Congress appropriated over 6 million dollars in grant funds for
the construction and renovation of non-acute care intermediate and
long-term care facilities for AIDS patients. This grant program is
authorized under section 1610(b) of the Public Health Service Act. We
believe that the shortage of non-hospital facilities for AIDS patients is
one of the most acute service delivery problems associated with this
epidemic and we would urge your leadership in addressing this issue. The
efforts already underway which I have just described are only the
beginning and we need the commitment of the States in addressing this

problem.

RECOMMENDATION #3: THE COMMISSION SHOULD EXAMINE THE FINANCING SYSTEMS

SUPPORTING THE CARE OF AIDS PATIENTS

The Intragovernmental Task Force spent considerable time examining the
financing programs available for AIDS patients. We concluded that the
lack of uniformity in private insurance, the Medicare disability
provisions, and the differences among State Medicaid programs impacted
significantly on the problems associated with the treatment and services
available to AIDS patients. We would urge that the Commission focus its

review of the financing system on these issues.

 

 
 

RECOMMENDATION #4: ENCOURAGE EXPANDED FUNDING OF HEALTH SERVICES RESEARCH

RELATED TO AIDS AND HIV-INFECTED INDIVIDUALS.

The Task Force was repeatedly struck by the shortage of data and health
services research related to the care of AIDS patients. While the
National Center for Health Services Research is making headway in this
area, this Commission should consider approaches to stimulate further

research.

It has been my pleasure to review our activities and recommendations.

I am ready to answer questions.

 

 
 

 

(slide 1 - Sundwall testimony 1/14/88)

HRSA AIDS GRANT INITIATIVES

*Education & Training Centers _
*AIDS Service Demonstrations

*AIDS Drug Reimbursement Program

 

 
 

 

(slide 2 - Sundwall testimony 1/14/88)

SERVICE DEMONSTRATION PROJECTS

San Francisco New York City
San Diego Newark

Los Angeles Boston

Orange County Washington, D.C.
Miami Atlanta

Ft. Lauderdale Seattle

Palm Beach County

 

 
 

 

(slide 3 - Sundwall testiony 1/14/88)

Demonstration Project

Support and facilitate
systems of care to:
*Identify unmet needs
& develop strategies
*Coordinate, integrate Develop —> Replication
resources models
*Case management
*Reduce costs/develop
alternative care
*Ethnic/minority
sensitivity

 

 
 

 

(slide 4 - Sundwall testimony 1/14/88)

Service Components
of Demonstration Grants

Ambulatory - Diagnostic and Counseling
Housing Services for AIDS Patients
Case Management Services

Linkages with Hospital Care

Pediatric Services When Applicable
Non-Medical Support Services

On fH Ww ty
os © @ @

 

 
 

 

(slide 5 - Sundwall testimony 1/14/88)

Administrative Components
of Demonstration Grants

*Develop community advisory committee
*Model for replication if possible
*Relationship with other AIDS programs
*NOT develop separate system of care

 

 
 

 

(slide 6 - Sundwall testimony 1/14/88)

AIDS Drug
Reimbursement Program

*$30 Million in FY 1987 Supplemental
Appropriations

*One Time Grant Program to States to
Purchase AZT for Low Income People
*Eligible Individuals Are Those Not Covered
by Medicaid or other 3rd Party Insurance
*Low Income Defined by States

*All States Participating in the Program

 

 
 

 

(slide 1 - Sundwall testimony 1/14/88)

HRSA AIDS GRANT INITIATIVES

*Education & Training Centers
*AIDS Service Demonstrations

*AIDS Drug Reimbursement Program

 

 
 

 

(slide 2 - Sundwall testimony 1/14/88)

SERVICE DEMONSTRATION PROJECTS

San Francisco New York City
San Diego Newark

Los Angeles Boston

Orange County Washington, D.C.
Miami Atlanta

Ft. Lauderdale Seattle

Palm Beach County

 

 
 

 

(slide 3 - Sundwall testiony 1/14/88)

Demonstration Project

Support and facilitate
systems of care to:
*Identify unmet needs
& develop strategies
*Coordinate, integrate Develop —> Replication
resources models
*Case management
*Reduce costs/develop
alternative care
*Ethnic/minor ity
sensitivity

 

 
 

 

(slide 4 - Sundwall testimony 1/14/88)

Service Components
of Demonstration Grants

Ambulatory - Diagnostic and Counseling
Housing Services for AIDS Patients
Case Management Services

Linkages with Hospital Care

Pediatric Services When Applicable
Non=Medical Support Services

Ow Ff Ww pp
e

 

 
 

 

(slide 5 - Sundwall testimony 1/14/88)

Administrative Components
of Demonstration Grants

*Develop community advisory committee
*Model for replication if possible
*Relationship with other AIDS programs
*NOT develop separate system of care

 

 
 

 

(slide 6 - Sundwall testimony 1/14/88)

AIDS Drug
Reimbursement Program

*$30 Million in FY 1987 Supplemental
Appropriations

*One Time Grant Program to States to
Purchase AZT for Low Income People
*Eligible Individuals Are Those Not Covered
by Medicaid or other 3rd Party Insurance
*Low Income Defined by States

*All States Participating in the Program

 

 
 

 

Testimony Before
The Presidential Cammission on the
Human Immunodeficiency Virus Epidemic
January 14, 1988

by
Cliff Morrison, M.S., R.N., 0.5, 0.N.A.
Deputy Director
The Robert Wood Johnson Foundation
AIDS Health Services Program
Institute for Health Policy Studies
School of Medicine
University of California, San Francisco

Service Delivery Demonstration Models:

The AIDS Health Services Program is a national initiative of The Robert
Wood Johnson Foundation which began implementation in January of 1987. The
program is supported by grants totalling $17.2 million to nine projects in eleven
communities around the United States, A list of the projects and addresses is
enclosed.

The AIDS Health Services Program grants were provided to support the
establishment of specialized, comprehensive health and supportive services for
persons with human immunodeficiency virus (HIV) infection. The projects are
intended to ultimately serve as models for large urban, mid-sized urban, suburban
and rural projects.

The goal of the program is to help bring needed medical and supportive

-services to persons suffering from HIV infection in the United States by:
1, emphasizing community-based, out-of-hospital care;
2. demonstrating that care can be provided to persons with HIV infection more

humanely and at reduced cost; and

 

 
 

 

3. providing resources to help relieve the burden that caring for persons with
HIV infection has placed on many urban hospitals and health care systems
in the absence of alternative, community-based services.

The Robert Wood Johnson Foundation, a national philanthropy, has
awarded more than $800 million in grants since 1972 to improve health care in the
United States. The Foundation is committed to serving underprivileged and
underserved populations and attempting to provide assistance to groups that have
had difficulty gaining access to health care in the United States.

Technical assistance and direction for the program is being provided by the
Institute for Health Policy Studies of the University of California, San Francisco.
The Director of the program is Mervyn F. Silverman, M.D., M.P.H., former Director
of Health in the city and county of San Francisco. The Principal Investigator for the
program is Philip R. Lee, M.D., Professor of Health Policy and Social Medicme, and
Director of the Institute for Health Policy Studies, University of Califorma, San
Francisco, and President of the San Francisco Health Commission. § The
program is also assisted by staff at the Foundation in Princeton, New Jersey under
the direction of Pani Jellinek, Ph.D., Senior Program Officer. A National Advisory
Committee consisting of experts and leaders in health care and the care of persons
with HIV infection from around the United States have played an active role in the
initial review of applications, selecting applicants during the review process,
participating i in project site visits, monitoring the ongoing operation of the program
and providing technical assistance and expertise to the program and the individual
projects. A list of the members of the National Advisory Committee is also
enclosed.

 

 
 

An evaluation of the AIDS Health Services Program has also been funded by
the Foundation. The evaluation is being conducted independently by the Centers for
Long Term Care, Gerontology and Health Care Research of Brown University,
Providence, Rhode Island. The director of the evaluation is Vincent Mor, Ph.D.
The focus of the evaluation will be on the key health services and policy questions
regarding the impact of the program on the problems it seeks to resolve. All of the
nine projects are participating in the evaluation process.

The funding for the four year program is being divided into two twenty-four
month grant cycles. Funding for the second twenty-four month period will be
contingent on performance under the first grant and the potential for the project to
be sustained after the Foundation support has concluded.

The criteria developed by the Foundation and program staff to select the nine
projects have been frequently requested by federal, state, public and private granting
agencies and organizations. For that reason, a description of the selection cnteria
is enclosed.

The AIDS Health Services Program emphasizes out-of-hospital services and
each of the projects has organized and developed comprehensive networks of out-of-
hospital or community-based services for persons with HIV infection. A list of the
comprehensive, out-of-hospital services, which have been used widely, is also
enclosed. These comprehensive networks emphasize the utilization of creative
approaches to health care delivery at the community level, with less emphasis

_placed on the traditional institutional and medical model systems for care. The
network concept formed the basis for the AIDS Health Services Program utilizing
the experience from San Francisco, which is a model community-based system that
seeks to avoid hospital care whenever possible. The model emphasizes strong
coordination and a belief that community-based systems are not only more efficient,

but more cost effective as evidenced by San Francisco developing the most

 

 
 

 

coordinated system in the United States with the lowest costs per patient. A
description of the San Francisco model and reference material pertaining to costs
are enclosed.

The grantees were chosen from the list of twenty-three eligible Standard
Metropolitan Statistical Areas (SMSA) which had more than 100 cases of AIDS as of
December 1985. The nine projects in the various communities around the country
maximize the program's flexibility and provide a wide variety of settings and
populations with which to work. Two.of the projects include more than one
community. [In South Florida, Miami and Fort Lauderdale are jointly funded
through a grant to the Public Health Trust of Dade County. In Northern New
Jersey, Newark and Jersey City are jointly funded through the New Jersey
Department of Health.

A key requirement of the program was the establishment of a consortium of
hospital and community-based providers who jointly could deliver the full range of
services required by people with HIV infection. In addition, each project was
required to establish a local advisory committee representing a wide range of
constituencies in the community. The program includes the following projects:
Atlanta:

This project, administered by AID Atlanta, a community agency,

coordinates services with Grady Memorial Hospital, one of the largest

hospitals in the Southeastern United States.

Dallas:
This project is also administered by a community agency, the AIDS Arms
Network, sponsored by the Community Coumc:! of Greater Dallas, one of the

nations largest and most active community councils.

 

 
 

 

Miami and Fort Lauderdale:
This grant supports two projects and is administered by the Public Health

Trust of Dade County. This project supports a substantial number of
Haitian patients. The Dade County consortium includes Jackson Memorial
Hospital, which services more persons with AIDS than any other hospital in
the United States.

Nassan County, Long Island:
This project, which covers the western haif of Long Island, serves a largely
suburban population, including a substantial number intravenous drug
users. The project is administered by the Nassau County Department of
Health.

Newark and Jersey City:
This grant, which is administered by the New Jersey Department of Health,
serves a large population of intravenous drug users in two hard-hit urban
communities in northern New Jersey.

New Orleans:
This. project 1s administered through the Associated Catholic Charities of
New Orleans and has established a model of cooperation between community
and religious groups.

New York City:

~ New York city has by far the largest number of AIDS cases of any city in the
country. This project, administered through the AIDS Institute of the New
York State Department of Health is developing the largest service delivery
consortium in the country to more effectively meet the high demand for

services there.

 

 
 

 

a ach Co
This project serves West Palm Beach and Belle Glade, a rural community
with the highest prevalence of HIV infection nationally.

Administered by the Seattle - King County Department of Health, this project

is working creatively with the private sector and the community to meet the

rapidly increasing needs for AIDS services. Harborview Medical Center is

part of the consortium that was developed for the project.

During the first year of the program, a management information system
(MIS) was developed (a description is enclosed) to assist with data collection,
ascertain changes in utilization patterns and facilitate the evaluation process. The
MIS is currently in the process of being implemented. The projects are presently
focusing on developing and implementing individual case management systems.

At the end of the first year of the program, there are some indications that
the overall average length of stay (ALOS) may be reducing, the average cost per
patient may be stabilizing.and the level of patient/client satisfaction may be
increasing. However, these factors will not be documented until the final program
evaluation is completed. In the first year of the program, the projects have begun
to develop coordinated systems of care that over time may serve successfully and
are resources and models for other community-based projects. Ultimately, some of

~ the lessons learned from the AIDS Health Services Program may be of value i

helping the nation address other health care problems

Enclosures: List of projects and addresses.
List of National Advisory Committee
Project Selection Criteria
Comprehensive Networks of Out-of-Hospital Services
San Francisco Model and Reference Matenals
Types.ofProyects
Management’ {nférmation System

 

 
 

CARE HEARINGS Recommendations

JANUARY ]3-]5 Page ] of

 

RECOMMENDATIONS

 

Encourage communities to develop coordinated planning efforts for dealing
with the HIV epidemic in their locality. Planning should involve input
from community groups and an advisory committee that reflects the unique

demographics of a given area.

Cost: $§$ Based upon:
RECOMMENDATIONS

 

 

Emphasize creating networks for out-of-hospital or community-based systems of

care. Encourage-communities to develop consortia of service delivery organizations
utilizing the models already in place in the existing national demonstration
projects. This can be done using local resources, expertise and advisory

groups that reflect the individual communities.

Cost: §$ Based upon:
RECOMMENDATIONS

 

Cliff Morrison, M.S., R.N.

 

Name signature

AIDS Health Services Program

1326 - 3rd Avenue January 14, 1988

 

Address — Date

San Francisco, CA 94133 $15 476 8695

° ~~ y —_—_—
° —e wees

 

 
 

 

CARE HEARINGS Recommendations

JANUARY 13-15 Page 2 of 2

 

RECOMMENDATIONS

Provide encouragement and incentives for philanthropic organizations to become
more involved in developing service delivery programs for persons with HIV

infection.

 

 

 

 

Cost: $ Based upon:
RECOMMENDATIONS
Cost: $ Based upon:
RECOMMENDATIONS

 

Cliff Morrison MUS RN

 

 

 

 

 

 

Name
Signature
AIDS Health Services Program 3
1326 - 3rd Avenue 4 fe ae
Address ye Date
San Francisco, CA 94143 415 476 8695
Cicy Stsac2 aD NeGa Coae ana | antes

 

 
 

 

Testimony Before
The Presidential Commission on the
Human Immunodeficiency Virus Epidemic
January 14, 1988

by
Clif Morrison, MLS., R.N., 0.8, C.N.A.
Deputy Director
The Robert Wood Johnson Foundation
AIDS Health Services Program
Institute for Health Policy Studies
School of Medicine
University of California, San Francisco

Psychosocial Issues:

Many of the psychosocial support systems that exist today for working with
persons with human immunodeficiency virus (HIV) infection were in place before
the epidemic. By modifying, adapting and expanding these systems, additional
service components can be added to assist in meeting the present needs. There is
no better place to observe this phenomenon than in San Francisco. There tends to
be a widespread belief that the "San Francisco Model," or many of the community-
based support systems that have been developed there, are not applicable to other
cities or communities. It is important to emphasize that this is only partially true.
If we examine the types of systems in place in San Francisco, we can begin to see
that many components can be duplicated, modified or adapted to other areas of the
Country.

It is true that San Francisco is unique, a small city which is multi-ethnic
with numerous concentrated neighborhoods. The major group affected by HIV
infection in the city has, from the beginning, been homosexual and bisexual men.
Both the gay community and the medical establishment responded quickly, as

 

 
 

 

communities in San Francisco have done historically. The gay community
organized itself and began working with the “traditional” health care system to deal
with the issues. The most significant point here is that community groups and
bureaucratic systems, i.e., the Public Health Department, began communicating,
each accepting a level of responsibility. The Department of Public Health and San
Francisco General Hospital were willing not only to work with the “community”
groups, but also, for the first time, to work more closely with community-based
service agencies, such as Shanti, a group organized to provide emotional peer
support to persons who are terminally ill, the San Francisco AIDS Foundation,
hospice, and a vanety of other community and church groups. This needs to be
pointed out because 1t emphasizes the umpact of communication and planning and a
willingness by all concerned to do both. This occurred because the traditional
health care establishment was willing to admit that it could not solve the problems
alone. This initial act, more symbolic than anything else, gave a clear message to a
historically disenfranchised group. That message was, "We accept clients for who
' they are, and are willing to work with them and allow them to be part of the
decision-making process." This approach, as simple as it sounds, allowed
individuals and groups to feel that they were more involved, that they were validated
and that they had some control over their own lives.

The “San Francisco Model" (a copy 1s enclosed) developed over time, and it is
constantly changing and evolving. The most important feature was that the
responsibility was shared at every level from the Mayor's office down to the
individual seeking health care services. This is not necessarily an easy approach,
but it can be facilitated by utilizing planning, coordination and collaboration. The
model depends heavily on psychosocial support systems from a non-traditional
perspective and, in this model, it began with massive volunteerism. Community

volunteers first began working with groups such as the Shanti Project providing

 

 
 

 

emotional peer support in the area of death and dying, then on to other support
services such as financial assistance, practical support, housing and advocacy.
Soon volunteers began joining a wide variety of patient advocacy and service
organizations, including hospice, community, advocacy, and church groups. This
gave San Francisco an edge early in the epidemic and has resulted in a model that
the present administration has advocated from the beginning, that communities
take responsibility and action locally and not wait for the state or federal
government to act for them.

Volunteerism itself can be very helpful and significantly influence the aspect
of cost containment. However, in our experience, we realize that communities
cannot totally depend on volunteers for the delivery of services. Even in San
Francisco, the recommendation has been to utilize volunteers when and where
possible to start programs, but plan from the beginning that, eventually, most of
these activities will have to be assumed by salaried and professional staff. It
should be emphasized that this can still be a major cost saving for a community,
particularly during the early phase of implementation.

Churches and religious groups historically have provided the best models for
volunteer programs and activities, and, at this time, more and more of them are
becoming involved with the epidemic. Over the past several years, church groups _
have developed supportive services for people in their own neighborhoods or in
relationship with organizations such as hospice. An excellent example of church
involvment is in New Orleans where the entire system, the New Orleans AIDS
Project, is administered through the Associated Catholic Charities, the
organization that historically in that city has responded to local needs. When these

 

 
 

 

kinds of more traditional services are developed, coordination of training,
supervision and on-going development need to be addressed to prevent duplication
and to standardize the services being delivered. This approach can also be utilized
with a different mix of clients, but it becomes even more important as the number of
HIV infections among substance abusers or IV drug users increases. For
example, as the numbers of substance abusers increase, the need for more training
and the involvement of more mental health care providers with specific expertise in
substance abuse issues becomes necessary. Creating these pools of volunteers and
professionals enables the system to provide a variety of psychosocial support services
to individuals in a variety of community settings. This can result in reducing the
dependency on acute care institutions and help to contain the costs of providing care
to persons with HIV infection.

In the institutional setting, both in in-patient and out-patient areas, the need
for psychosocial support services is obvious. In the out-patient or clinic areas,
clients need counseling, education, and advocacy as they come into the system.
Here also, a combination of volunteers and paid professional staff can provide
quality services that, in the long rum, will help to contain costs. In the in-patient
aréa, these kinds of support systems are critical to the development of a
comprehensive system. A combination of counselors, social service providers,
_mental health professionals and volunteers is critical to developing the continaum
“of care. At every point in the system, whether it be institutional or community-
based, emphasis has to be placed on observing the clients/patients' mental health

status for signs of serious depression, suicidal ideation, or neurological

 

 
 

 

 

complications. Volunteers and non-mental health professionals can be trained to
identify problems and then refer the individual to an appropriate mental health
professional for follow up. Psychosocial systems for clients should include
emotional support (usually volunteers), social services which includes case
management and patient advocacy, individual and group counseling, education,
specific mental health services, and support for clients’ families or significant
others. These psychosocial “teams” need to be developed to deal with the specific
population needs. In most areas, gay men have been very cooperative and receptive
to this model of psychosocial support. When large numbers of substance abusers
need to access the system, there will need to be a slightly different focus. A clinic or
in-patient service with increased numbers of substance abusers will need to have a
greater concentration of trained mental health professionals to deal specifically
with behavioral problems and limit setting. Without a strong mental health
component to assist direct care providers in this area, there will be disorganization
and higher attrition rates among staff, thus increasing costs. It is also important
to point out that direct care providers, whether in the institutional or community
settings also need access to emotional support systems for themselves. Providing
individual and group support for staff can influence tremendously the professional
“burnout” and attrition rates. Professional staff also need specific training on

_ issues of lifestyle, sabstance abuse, grieving and death in ying, particularly since
~ AIDS i is a disease that primarily affects young people.

The entire health care system wil] have to examine attitudes towards dealing
with different patient groups. Examples of this include assessing support systems
for substance abusers with HIV infection to see that they meet the needs of the
individual rather than focusing on rehabilitation. People with terminal illnesses
many times will not be motivated to give up their substance abuse behavior

 

 
 

 

(i.e., heroin) when they know that they are going to die anyway. The same premise
is also true when we look at attitudes concerning family involvement, regardless of
the groups. Historically, in health care, the definition of family was limited to legal
spouse or immediate family member. In order to provide support and facilitate
care, there is a need to include “non-traditional” significant relationships in the
definition of family.

Specialized psychosocial support systems utilizing the same framework as
described previously need to be developed to meet the specific needs of women and
children with HIV infection. Along with this, the system will have to focus on the
needs of persons with HIV infection in the correctional system. By developing
psychosocial support systems, the correctional system can be assisted in learning to
deal with the problems that it already faces with inmates with HIV infection.
Without a planned and coordinated approach, the system will continue to be
confronted with unprecedented problems in the future.

Throughout the epidemic, a focus on patient care issues has been
emphasized, moving the system away from the traditional medical model to one
which focuses more on the needs of clients. It is through providing patient care
services, particularly the psychosocial services, that the system has been abie to
create a continuum of services to meet different needs and at the same time contain
the costs. The biggest obstacle for the health care system has been in changing

“attitudes about clients and attitudes about how health care can best be delivered. To
move beyond this obstacle will involve each of us examining our own issues of
control. The special problems and issues posed by the HIV epidemic are not new.
These issues have been present all along, but it has taken the epidemic to push them
all to the surface at once. The problems that we are trying to deal with at this time

 

 
 

are universal withm health care and placing a greater emphasis on psychosocial
support systems and community-based care has been needed for many years. By
working collaboratively, we will be able to facilitate the development of creative and
innovative approaches to health care that will meet the needs of society as a whole.
This approach will directly benefit anyone who has to seek access to health care in
the United States today regardless of their diagnosis or their socioeconomic status.

Enclosure

 

 
 

 

CARE HEARINGS Recommendations

JANUARY ]3-J5 Page ] of

 

RECOMMENDATIONS

Encourage health care systems to examine attitudes towards substance abuse,
specific lifestyles, non-traditional family structures, etc.

Cost: § Based upon:

RECOMMENDATIONS

Develop specific programs utilizing the stated model for (1) women, (2) children,
and (3) HIV infection in persons within the correctional system.

Cost: $ Based upon:
RECOMMENDATIONS

 

Cliff Morrison, M.S., R.N.

 

 

 

 

Name Signature

AIDS Health Services Program

1326 - 3rd Avenue January 14, 1988
Address a ara Date

San Francisco, CA 9

we
—

Alize 315 476 2695

7.5 oa i
—S re) BESS Cle CAG Lee eur gt

 

loc.

 

 
 

CARE HEARINGS Recommendations

JANUARY ]3-]J5 Page ] of

—EE

 

RECOMMENDATIONS

 

Modify, adapt and expand present psychosocial support services which include
homecare, hospice, and mental health services in the institutional setting
and in the community.

Cost: § Based upon:
RECOMMENDATIONS

 

Create additional psychosocial support services, i.e., organizations such as
Shanti, organizations such as Health Crisis Network in Miami, Gay Mens Health
Crisis Center in New York, AIDS Project Los Angeles, and the San Francisco
AIDS Foundation. Church organizations such as exist in San Francisco and
New Orleans.

 

Cost: §$ Based upon:
RECOMMENDATIONS

 

Cliff Morrison, M.S., R.N.

 

 

 

 

N

“AIDS Health Services Program Signature

1326 - 3rd Avenue January 14, 1988
Address Date

San Francisco, CA 94143 415 476 8695

 

 

~ . owen n ° ~
Clits Lace e1D rea Coce anG ‘etenrnsa

(
qt

 

 

 
 

 

CARE HEARINGS Recommendations

JANUARY ]3-J5 " Page ] of

 

RECOMMENDATIONS

Encourage the development of system-wide planning and coordination utilizing
community groups and local resources.

Cost: $ Based upon:

RECOMMENDATIONS

Provide incentives for the development of volunteer groups in communities and
coordinate the training, supervision, ongoing development and standardization

of services whenever possible.

Encourage the integration of volunteer services into existing organizations.

Cost: $§$ Based upon:
RECOMMENDATIONS

 

 

Cliff Morrison, M.S., R.N.

 

 

 

 

Name Signature

AIDS Health Services Program

1326 - 3rd Avenue Data January 14, 1988
Address — Date

San francisco, CA 94143” 415 176 2695

Cnov .
a wm * =u oO RY . . —~
° -—Se en som? escea |eoeae ana vbr

 

 
 

 

CARE HEARINGS Recommendations

JANUARY ]3-]5 Page ] of

 

 

RECOMMENDATIONS

a continuum of services emphasizing development of psychosocial teams
social service providers, case managers, volunteers, and

fic populations with specific needs. Utilize
fic expertise in working with substance

Develop

of counselors,
educators to deal with speci

mental health professionals with speci
abuse issues when planning those services.

Cost: $ Based upon:

RECOMMENDATIONS

Provide incentives for projects to develop and implement coordinated case

management systems.

Cost: $ Based upon:

RECOMMENDATIONS

Cliff Morrison, M.S., R.N.

 

 

Name Signature

AIDS Health Services Program

1326 - 3rd Avenue January 14, 1988

 

‘AdGress Dace

 

a 415 476 8695

we afl CoLoe we a pees :
: rhe eee wR NS 2h sas

 

 
 

 

CARE HEARINGS Recommendations

JANUARY ]3-]5 Page ] of

 

RECOMMENDATIONS

Develop support systems for care providers in the institutional setting
and in the community. Support systems will decrease burnout, attrition
rates of staff and assist in containing costs.

Cost: $§$ Based upon:

RECOMMENDATIONS

 

Provide for ongoing training for staff in institutional and community settings
on issues of lifestyle, substance abuse, grieving, and issues of death and

dying.

-

Cost: $ Based upon:
RECOMMENDATIONS

 

Cliff Morrison, M.S., R.N.

 

 

 

 

Name [gnature

AIDS Health Services Program Sig ue

1326 - 3rd Avenue January 14, 1988
address Dm Date

San Francisco, CA 94143 °, ~ 415 476 8695

 

 

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City Stare we Area Coce ana Tetenonone

 

 
 

 

San Francisco Model

A community-based system that seeks to avoid hospital care

whenever possible. It includes:

a dedicated inpatient unit at San Francisco General Hospital
to provide inpatient services;

a highly specialized AIDS. outpatient clinic based at SFGH,
staffed by oncologists, infectious, disease specialists, nurses,
social workers, and volunteers who deal exclusively with AIDS;

high-technology home health care services such as I.V.
antibiotics and chemotherapy;

community-based counseling and supportive service programs
staffed primarily by volunteers who provide assistance to
PWA's/ARC in shopping, cooking, cleaning, paying bills, and
other activities of daily living (practical support). Emotional ’
counseling and support for PWA's/ARC and their family and .~
friends;

skilled nursing facilities and hospice care (home and inpatient);

education and prevention program for persons at risk (due to
high-risk behaviors), transportation services, and emergency
and longterm residential faciltities for PWA's who can no
longer afford housing

 

 
 

 

Comprehensive Networks of
Out-of-Hospital Services

Must include the following components:

1. Comprehensive, AIDS-specific ambulatory care services that
would result in improved diagnosis, earlier treatment and
intervention, and reduced utilization of costly inpatient services.
These should be staffed by highly specialized multidisciplinary teams
of physicians and nurses backed by subspecialists in infectious
disease, oncology, pulmonary disease, and others as appropriate.
Such facilities should also offer counseling and psychosocial support
services for patients and families if these are not offered through a
community-based setting. Ideally, these facilities would be based at,
or closely linked to, major academic health centers involved in
clinical research and treatment of persons with AIDS.

2. A continuum of in-home medical, nursing and supportive
Services to maintain patients in the most humane and least costly
setting possible. These include:

-- skilled and intermediate nursing facilities and hospice
services when hospital care is not needed but more than home
care is required, or to help the patients manage the final days
of life;

-- home health care services and in-home practical assistance
with basic tasks of daily living to help maintain AIDS patients
in their homes as long as possible. In-home practical support
services would mainly be provided by volunteers.

4

3. Coordinated, comprehensive case management services.
Case managers (social workers, nurses or trained volunteers) help
patients and families navigate through the service and public
benefits systems. Case managers could be based at the ambulatory
clinics or voluntary community organizations.

High priority is given to Systems that are able to link these
Services to a dedicated AIDS inpatient hospital unit.

 

 
 

 

My name is Dr. Susan Tross. I am a psychologist who has been
working with people with AIDS and HIV infection since 1983 at the
Memorial Sloan Kettering Cancer Center in New York City. Since
July, I have been working with Drs. Don Des Jarlais and Sam
Friedman, from Narcotic and Drug Research Inc., to bring AIDS
education and prevention information to poor, hard-to-
reach,inner city adults and youth who are intravenous drug users
or who may be their sexual partners.

When, as with AIDS, the stake is death, it is easy to lose sight
of the assaults on quality of life faced by those who are
struggling with survival. But, for the young mother with AIDS
who is afraid to hug her children, the drug user who has been
thrown out of his home, or the gay man who can no longer turn to
his parents, these human issues in AIDS and HIV infection are all
too real.

I would like to highlight some of the key mental health issues
that beg for programmatic attention, and to pinpoint the mental
health services that are most needed to help us confront them:

1. HIV disease must be understood as a chronic illness -- which
at each juncture in its course poses the threat of emotional
crisis. The "hidden" patients in the HIV era are the
ambulatory, intermittently dysfunctional people with
intermediate forms of disease (i.e. like AIDS related
complex). In our psychiatric studies of gay men with AIDS,
ARC or no physical symptoms, we found the greatest degree of
emotional distress in men with ARC. 70% of this group had a
current psychiatric disorder, as contrasted with 54% of the
AIDS group, and 35% of the healthy group. These men
uniformly describe themselves as "walking time bombs" "living
in limbo" -- under the burden of persistent, catastrophic
fear about developing AIDS. These studies have not been done
with i.v. drug users -- but we can only expect these problems
to be magnified in a population whose material and social
resources are generally weaker.

2. As I am sure you will hear from Dr. Johnson, the neurological
complications of HIV brain infection may mimic psychiatric
disorders -- especially depressive withdrawal and passivity.
Or, they may produce reactive psychological problems in the
young person with AIDS -- who may feel particularly |
devastated by fears that he/she is "losing his/her mind".

The lack of readily accessible techniques for differential
diagnosis makes management of symptoms highly problemmatic.

3. HIV testing must be understood as a major psychological
stressor -- which bears the liability of severe emotional
fallout. Anyone who has had to notify a frightened and
confused young man or woman of his/her seropositivity knows
the anquish, the despair and the hopelessness conferred by

 

 
 

 

this moment. A special, tragic case of this is the young
woman who learns that her baby is seropositive.

It will probably be at this juncture that

suicidal risk will prove to be greater than at other stages
in the course of HIV. It will also probably be at this point
that risk of dissolution of interpersonal relationships will
be prove to be the greatest. In a study of i.v. users noti-
fied of their seropositivity, four out of five couples in
which the seropositive partner initiated condom use split

up after this occurred (Casadonte et al, 1987). Further,

if one appreciates the fact that both drug use and sexual
activity sometimes serve as important modes of tension
release, then it is easy to see how HIV testing, without
adequate emotional readiness, could actually lead to relapse
to drug or unsafe sexual practices, through the mechanism of
stress response.

The psychological impact of HIV disease reaches far beyond
the index patient -- to the significant others, the
caretakers, the dependents and many others in the patient's
social network. As these people lose their entire network to
AIDS, they are vulnerable to the multiple liabilities of
bereavement, burn-out and traumatic concern with their own
health.

Existing mental health resources are grossly inadequate to deal
with these issues. And, because we are dealing with hard-to-
reach populations, living on the edge of the mainstream, innova-
tive approaches are needed to deliver service effectively.

These approaches include:

l.

Establishment of dedicated, multidisciplinary AIDS units
attached to existing community service sites -- so that
we are able to bring the services to this population,
rather than the population to the services. These sites
should include drug treatment programs, medical clinics,
community hospitals, family planning clinics, sexually
transmitted disease clinics and other sites which already
attract the populations we are committed to reaching;

Commitment to grass-roots, self-help, community- based
modalities of health care -- which better reflect the

informal patterns of help-seeking in the hard-to-reach
populations we are trying to reach;

Augmentation of the functions of the HIV testing and
counseling programs -- so that they are loci of preven-

 

 
 

 

tion and referral activities;

Establishment of dedicated inpatient psychiatric and extended
care facilities -- that are equipped to deal with the
problems of AIDS Dementia;

Initiation of routine staff training programs in general
hospitals and outpatient clinics -- to make the community
health provider comfortable and familiar with the issues
surrounding HIV disease;

Establishment: of hospice programs to provide back-up for
patients and the families of patients dying at home;

Recruitment of minority health professionals for programs
targeted at minority populations -~- to assure the greatest
possible participation in health care services.

 

 
 

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American Psychiatric’ Association

1400 K Street, N.W., Washington, D.C. 20005 «+ Telephone: (202) 682-6000

TESTIMONY OF

THE AMERICAN PSYCHIATRIC ASSOCIATION

THE AIDS EPIDEMIC

BEFORE THE
PRESIDENTIAL COMMISSION ON THE HUMAN
IMMUNODEFICIENCY VIRUS EPIDEMIC

PRESENTED BY

CAROLYN B. ROBINOWITZ, M.D.
DEPUTY MEDICAL DIRECTOR

ON

JANUARY 14, 1988

 

 
 

 

Chairman and Members of the Commission:

My name is Carolyn B. Robinowitz, M.D. and I am Deputy Medical Director
of the American Psychiatric Association, a medical specialty society
representing more than 34,000 psychiatrists nationwide. I am also a
past President of the American Board of Psychiatry and Neurology
(ABPN) .

The APA appreciates this opportunity to appear before the Presidential
Commission on the Human Immunodeficiency Virus Epidemic and to outline
for the Commission our ongoing AIDS education efforts and our
recently-developed AIDS policy statement together which bear directly
on the primary focus of the Commission, that is the development of a
national AIDS policy. As many of the public policy issues involve a
conflict between the rights of infected individuals and society's
interest in containing the epidemic, a definitive public health
strategy has not yet emerged. While funding for biomedical and
behavioral research has been exemplary, issues of service delivery,
care for persons with AIDS, and protection against discrimination based

on HIV infection still need to be addressed.

With respect for the Commission’s hearing time constraints for
witnesses, I will not read to you the APA’s official position
statements. Rather, I have appended to this statement our suggested
policy guidelines and ask that they be made part of the hearing record.

In essence the APA policy attempts to strike the necessary delicate

 

 
 

 

balance to protect the rights of infected individuals and society's
interest in containing the epidemic based upon the current state of
Scientific and medical knowledge. As a medical specialty, we continue
to assert that psychiatrists have a responsibility to educate
themselves, their patients and their communities with regard to the
neuropsychiatric and psychosocial aspects of HIV disease including its
biological and psychiatric clinical manifestations, the psychosocial
reactions to the illness and the appropriate treatment modalities
available to patients. To this end, we will continue to integrate our
efforts with those of other medical disciplines and mental health
professions and work conjointly with them in our communities and

professional activities.

Mr. Chairman, as you know, the scope of HIV infection and AIDS is a
growing problem. In the United States HIV-infected individuals may
number one and one-half million with more than 50,000 cases of AIDS.
The two major areas of concern at the present time are (1) providing
the best possible care for those infected, whether symptomatic or not,
and (2) developing effective ways to prevent further Spread of the
virus. The national response in each area must be scientific in order

to be effective.

As you know, there are organic complications of HIV infection, apart
from the well-known opportunistic infections. Central nervous system
(CNS) complications include depression, a range of dementias and a
range of cognitive and memory dysfunctions. Research shows that up to

two-thirds of all AIDS cases present with these organic complications.

 

 
 

 

I want to emphasize that these problems are treatable with appropriate
diagnosis and care. A further complication is the realization that the
mind is being affected, engendering a frightening loss of self-identity
which can be devastating for both the patient and those around the

patient, especially since the patients are typically young.

HIV infection also causes problems in functioning, both in those
infected and in those who are not as a result of the HIV epidemic. For
those who are seropositive, there exists an everpresent fear of
disability and death; a sense of isolation from families and friends
both because the individual feels responsible for the infection and is
afraid of infecting others and because of lifestyle issues related to
the illness; and commonly, contemplation of suicide. For those who are
not infected, but who consider themselves at risk, there also are a
number of possible serious psychological responses possible. For
example, the fear of infection overwhelms a realistic assessment of the
danger. Some individuals isolate themselves from social contact. Others
experience severe stress from self-imposing strictures on social
interactions as a result of unreasonable fears of contagion. Still
others will seek to " lay blame " and react unreasonably and
irrationally against those presumed to be responsible.

Mr. Chairman, you should know that psychiatrists are becoming
increasingly involved with the medical diagnosis and treatment of the
organic syndromes and dementias which can accompany HIV infection and
with the functional disorders which can occur in both the seropositive

and uninfected (though concerned) groups. Our members are involved in

 

 

 
 

efforts to limit or prevent HIV transmission and affect the behavior
change necessary to lower transmission. These efforts are compounded by
the lack of either a protective vaccine or a universally effective
treatment. Because there is no cure, the best present efforts for
reducing the spread of the disease involve modifying the behavior of
infected individuals through counseling. Individual psychiatrists are
looking to the APA for guidance and leadership in dealing with the
broad spectrum of: emerging issues related to HIV disease, including
guidelines for testing, appropriate confidentiality, and care of
seropositive patients in psychiatric hospitals or psychiatric units in
general hospitals.

In June of this year, the APA Board of Trustees approved the formation
of an Ad Hoc Committee on AIDS Policy for the purposes of providing the
Association with timely information and reasoned counsel on emerging
issues related to AIDS, and to provide leadership and guidance to our
members, members of the medical and mental health communities,
policymakers and the public. The Committee was created because of the
urgent need for policy and guideline development across a range of |
concerns, e.g., Clinical, educational, legal, ethical and social
issues. Our " blue ribbon" panel recently promulgated a policy
statement to assure adequate care and treatment of HIV patients which

we have appended to this statement.

To respond to the Board’s charge, the APA has taken several steps. We
have implemented a broad educational program for psychiatrists and

others, including the development of educational materials and an AIDS

 

 

 
 

Pe

Primer, and the sponsorship of educational activities such as
conferences and grand rounds. We are encouraging our 76 District
Branches to empanel local committees on AIDS to respond to local issues
and needs. Through our Office of Research, we are advocating for
research into psychiatric and psychological aspects of HIV infection.
Augmenting this effort is the APA-chaired subcommittee of the Mental
Health Liaison Group which has been vigorous (and successful) in
advocating before Congress for an enhanced biomedical and behavioral
research effort on HIV infection. Further, we are encouraging
psychiatrists to become better prepared to cope with the
ever-increasing number of AIDS cases through a continuing program of
articles in APA publications and programs at APA meetings. This

commitment led to the establishment, with support from the National
Institute of Mental Health (NIMH), of an APA AIDS Office to reach

underserved areas across the country.

 

Before discussing the issues of confidentiality and disclosure, let me
first discuss a part of the AIDS epidemic that the public knows little
about-AIDS-related dementia, in which the AIDS virus assaults the
central nervous system, attacking the victim’s ability to think, feel,
talk and move. Dr. Richard Price of the Memorial Sloan-Kettering Cancer
Center estimates that nearly two-thirds of the AIDS patients in the
United States will show symptoms of dementia before they die, including
children. About one in ten AIDS patients will develop dementia or other
neurological problems as the first sign of the disease, and a recent
study demonstrates cognitive impairment in HIV-positive but otherwise

asymptomatic individuals. As the Commission knows, AIDS dementia can

 

 

 
 

 

mask itself as depression or anxiety disorder’ making accurate medical
diagnosis of critical importance for effective patient management. We
would welcome the support of the Commission in recommending to Congress
the appropriation of new resources to better investigate ways to
develop treatments unimpeded by the presence of the AIDS virus in the
brain. Whether AZT is effective once it enters the nervous system is
unclear at this time and ripe for investigation by the scientific

community.

We heartily support governmental education initiatives to respond to
AIDS, particularly research and training efforts of the NIH and ADAMHA
agencies; epidemiological and informational activities of the Centers
for Disease Control; and especially, the efforts of the Surgeon General
and the Public Health Service to provide education to the medical and
lay communities on factual aspects of HIV infection, and their ongoing
efforts to provide a rational response to AIDS in the face of
unreasonable fear reactions. From the outset,the Alcohol, Drug Abuse
and Mental Health Administration (ADAMHA) has been particularly
instrumental in the Public Health Service effort on AIDS. Present and
future research initiatives will seek to clarify the behavioral factors
that might affect the course of the disorder; the behavioral
consequences of the disorder; and the utility of interventions to
modify, treat, or prevent these behavioral processes and consequences.
Congress is recognizing the substantial efforts the ADAMHA Institutes
have undertaken in combatting AIDS and funding high priority research.
The ADAMHA Institutes will also continue their efforts in such areas as

Iv drug abuse control. Interventions aimed at reducing behaviors that

 

 

 

 
 

 

may be linked to transmission or development of AIDS and treating or
preventing the mental health sequelae of the disease need to be
assessed in a rigorous manner, both to ensure effective care for those
affected by AIDS and to assist in developing effective strategies for
other, similar situations. We urge the Commission to join with the
scientific commmity in supporting further work into the psychiatric
presentations and complications of HIV infection. There is also an
urgent need for training both in the psychosocial and neuropsychiatric

aspects of the disease.

In addition to increased scientific inquiry, we recommend an increased
commitment to physician and health-care professional education.
Physicians must be able to serve as focal points for appropriate
community activities to stem further spread of the disease. However,
they can do this only if they receive basic education and training
about HIV and have continual access to the ongoing research in the
biological and behavioral aspects of HIV disease. We also recommend the
establishment of an aggressive, nationwide program of AIDS education
for all schoolchildren. While behavior of children and adolescents can
not be mandated directly, providing information to this population can
foster a "peer consensus " that " keeping safe " is the right thing to
do. This needs to be done now. In addition, we recommend that
information be provided directly to each person in the nation. This
should include clear statements about how the virus is transmitted and

how it is not transmitted.

Let me now move to another area of critical import in the design of an

 

 

 
 

effective public policy. Mr. Chairman, as’ you know, considerable
controversy presently exists regarding a physician's duty to warn an
unknowing, potentially endangered person of an HIV seropositive
individual who places that person at risk for HIV infection. We all
agree that the factors which must be weighed in these situations
include the confidentiality of the individual physician-patient
relationship and the physician’s responsibility to the commmity at
large. The integral issue of confidentiality is complex and
multi-faceted and has been raised in numerous state-enacted and
proposed-federal statutes. Psychiatrists are keenly sensitive to issues
of confidentiality based on our experiences in treating many of
society’s most stigmatized and ostracized members (e.g. the mentally

and emotionally impaired).

The APA’s examination of the intertwined issues of patient
confidentiality and the duty to warn centers on the principle that the
care and treatment of the patient is of utmost importance, and that
patients must be confident that the issues discussed with their
physicians are private and will not be divulged. AIDS, ARC and
HIV-seropositive status are stigmatizing conditions in our society,
much as are mental and emotional disorders. Compounding the stigma is
the prevalence of AIDS among groups that already experience
considerable intolerance, e.g., gay men and IV drug users. It is not
surprising, therefore, that considerable suspicion exists among persons
with AIDS that information about their antibody-status will be unfairly
used against them by employers, insurance companies, landlords and
others. Examples of AIDS-related discrimination, prejudice and violence

 

 

 
 

 

substantiate these fears. This discrimination not only threatens AIDS
victims, but also the collection of public health information needed to
follow the epidemiology of AIDS. The APA is therefore pleased that the
U.S. Supreme Court in School Board of Nassau County, Florida v. Arline
cited with approval the position of the American Medical Association ~~
that employment decisions about persons with contagious disease, such
as AIDS, should be based on reasonable medical judgements and not
prejudiced attitudes, stereotypes or unfounded fears. We will assist in
opposing legislative attempts to overturn the high court’s ruling in
Arline, and in supporting legislation (S. 1575 ) which grants statutory
protections to both victims of AIDS and individuals testing positive

for HIV.

Members of the Commission, we want to re-emphasize that optimm
psychiatric care requires that the patient disclose his or her most
intimate, innermost and private thoughts to the treating psychiatrist.
Psychiatrists are keenly aware that anything that interferes with the
confidentiality of such communications adversely affects the ability to
treat the ‘patient. A June, 1979 dissertation on this subject carried
out with a control group of 102 individuals concluded that " limited
confidentiality significantly inhibited self-disclosure". Through the
physician-patient relationship, the treating psychiatrist becomes the
repository of information valuable to other people and entities, such
as insurance carriers, legal adversaries, law enforcement agencies,
central intelligence officials and employers. Under conditions of
disclosure the patient’s confidence in the therapeutic relationship is
eroded and the ability to treat a patient diminishes. All mental

9

 

 
 

 

health care providers obligate themselves to protect the confidence of
their patients. This principle has been relied upon by the public and
has been, in a number of states, an expression of public policy.

It is our underlying belief that if patients can not trust physicians
with the intimate details of their lives, healthy communication will
falter and hinder the nation’s ability to control the HIV epidemic. As
such, our recent policy statement allows for a physician to breach
confidentiality only as a last resort and after scrupulous attention
has been given to all other alternatives. We feel that if physicians
are allowed to tell third parties that their patients are HIV
seropositive, then such patients may either lie to their physicians
about their HIV status or their risk behavior or stay away from
physicians altogether, resulting in the loss of a critically important

opportunity for counseling.

For the reasons we have outlined above, we maintain that a policy which
allows for breaches of confidentiality might be counterproductive in
discouraging individuals from agreeing to voluntary testing and thereby
contributing to the spread of the disease. Voluntary testing with
appropriate counseling ( before and after ) and protection of
confidentiality is an integral component of proper medical management
of the patient. Therefore, we have developed a set of suggested
guidelines for physicians to follow before informing a potentially
endangered person which we would be pleased to make available to you.

Mr. Chairman and members of the Commission, thank for for this

10

 

 
 

opportunity to present APA’s views. We look forward to working with
you and your staff toward the development of a responsible public
policy on AIDS based on reasoned scientific and medical judgement.

11

 

 
 

 

PRESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
655 15th Street NW, Suite 901, Washington, D.C. 20005 (202) 245-2437

CHAIRMAN
Admural James D. Watkins (Ret.) CARE HEARINGS Recommendations

 

RECOMMENDATIONS

 

(1) implement a national program of education and training
of physicians and health care professionals with respect to
detection, diagnosis, treatment and prevention of AIDS.

Cost: $ $37million in FY'89 Based upon:CBO estimate of TitleIv(S.1220)

RECOMMENDATIONS

 

(2) implement a national information campaign to each American
household, with a special emphasis on children and adolescents,
about high-risk activities associated with transmission of HIV.

CBO estimate of Title III(S.122

 

 

 

 

 

 

RECOMMENDATIONS
Carolyn Robinowitz, M.D. (~ Abt

Name Aber sdbldn. , Unit
APA Signature/ oO
1400 K St.,N.W. Washigton, D.C. 20005

Address Date LALA/88

= (202) -682-6331
y Stage Z1p Area Code and Telephone

 

 

 
 

 

PRESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
655 15th Street NW, Suite 901, Washington, D.C. 20005 (202) 245-2437

CHAIRMAN CARE HEARINGS Recommendations
Admural James D, Watkins (Ret.)
JANUARY ]3-]5 Page2] of2.

 

RECOMMENDATIONS

(3) augment the national research effort on the range of neuropsychiatric
and psychosocial issues related to HIV.

Based upon: doubling of the FY'88 budget
for ADAMHA's AIDS program

Cost: $225 million

 

 

 

 
 

 

 

 

 

RECOMMENDATIONS

Cost: §$ Based upon:
RECOMMENDATIONS

Name ignature
Address Date

 

City Stare Zip Area Code and Telephone

 

 
 

 

. AIDS POLICY:
GUIDELINES FOR INPATIENT PSYCHIATRIC UNITS

I. PATIENT CARE

In the medical setting, all available evidence indicates that AIDS is a disease of low
transmissibility. Education and counseling regarding HIV transmission continue to be needed
and should be available to physicians and other medical personnel. Historically, physicians
and other medical personne! have been exemplary in the treatment of patients, even in
situations of personal risk, and it is expected that this tradition will continue.

3.

All psychiatric patients shall be treated based on their clinical condition; neither HIV
infection nor serologic status shall, in and of itself, impede the delivery of appropriate
medical-psychiatric treatment.

HIV serological testing should be performed on a case by case basis with informed
consent when medically indicated. HIV serological testing should not be performed
solely for the purpose of routine screening or staff awareness.

Regardless of HIV serologic status, ail inpatients should be considered potentially at
risk for transmitting or receiving HIV infection. A minimal standard of care should
includes

a. Implementation and monitoring of infection control procedures as outlined by
current CDC standards;
b. Appropriate management of affective, cognitive and behavioral disturbances to

ensure risk reduction for both patients and personnel;
C. Appropriate education and supportive services for patients, families and staff.

If a patient known to be HIV infected engages, or threatens to engage, in behavior that
places other individuals at risk, the responsible physician shall assure that appropriate
clinical steps are taken to control the behavior, and, if necessary, isolate and/or
restrain the patient.

Il. DISCLOSURE

Once a patient has been hospitalized on a psychiatric unit and responsibility for the patient's
care has been assumed, a need to protect other patients and staff from foreseeable dangerous
behavior arises. In the situation where a particular patient is known to be HIV positive, the
following additional guidelines are recomm

Deciding whether to disclose a patient's HIV infection to other staff is a delicate
clinical question. The responsible physician should disclose the information to
appropriate staff only after discussions with the patient, when the physician determines
that appropriate treatment of the patient requires such disclosure.

 

 
2. If the patient engages in behavior likely to transmit the virus and there is a significant
riske that such behavior cannot be controlled by other measures, then disclosure of a
patient's infectious condition to other patients at risk is permissible. Disclosure is not a
substitute for adequate clinical care, and it is usually inappropriate for the physician or
staff to disclose a patient's HIV infection to other patients.

fll. OISCHARGE

At the time when discharge is otherwise clinically appropriate, and the patient represents a
substantial risk of danger to others by virtue of behavior known to transmit the virus, and
this danger is not related to a specific mental condition, it is inappropriate to retain the
person in the hospital solely for the purposes of quarantine. or preventive detention.

 

 
 

 

‘* AIDS POLICY:
CONFIDENTIALITY AND DISCLOSURE

INTRODUCTION : a
~ --'"* The AIDS epidemic presents difficult and perplexing issues, many of which involve ~
gh conflicts. between the. rights of. infected individuals and the. society's interest ir -:
, containing the epidemic. Because: these questions are highly controversial, and because
iso mony’ importan? scientific questions about’ the Gisoane remairr unanswered, @ definitive” ene
2 public he health strategy has not yet emerged... = ns

 
 

C4 kc at Sop oe apt he ow, tities. er ay ay reo PS Pet Set gag hs anges “Byte Se ebe ~

Kea aie g prone Bias leet See ne bine fees

pees &:; Physicians ans, aves ort ¢ important role to play in controlling Hie infection. However,’ ee

fox physicians, ‘the’ care: and’ freatment’. of ‘individual. patients. is of the. utmost.’ * -
importance. Patients must be confident that issues discussed with their physicians are .
private and will not be unnecessarily divulged. Certainly any breacty of confidentiality:
should be a last resort, only after scrupulous attention has been given to ail other

alternatives. | r

   

At the present time, the operational public health strategy promotes voluntary
z testing while eschewing programs of contact tracing, surveillance, segregation, and other .
measures. that. could discourage: people: from: seeking testing. Many troublesome ethicab-...
and: clinicak questions: arise: in: the: context” of dealing with individual patients, and they
(= purpose of this document is to provide some quidance to members of the profession as?
they struggle to honor their duty to preserve the confidences of their patients while |
taking adequate precautions. t to protect other persons who may be at risk of contracting
t isease. , . . . im

es tt: Physicians should: be aware that state laws may restrict some of the actions’
i> recommended. i in these: guidelines... Where conflict exists, attempts should be made ta

Emodi e Jaws ify occordance wit the: principles Sect ee sed gaa Baba ai

       

 
   

 

 

     

 

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oR Fee a 10 ee Te AD dag hn) Brg t eae ‘at Migs AEG vt " ford aE ST,
iat Physicians have an ethical obligation to recognize the rights to privacy, to confi-

deniati ity, and’ ta informed: consent of all patients. Ouring the initial clinical evaluation, :'
the: physician. should usually make clear. the generak limits of confidentiality. If thers. Me
cs physician has reason to suspect the patient is. infected with HIV (e.g.,, seropositive) or is...
F engaging ire behavior: that“is: knowre for transmit HIV disease, the physician shouid nent so
ther patient of the specific limits of confidentialitys: Further, if the physician intends tar
i inquire: specifically about a patient's HIV status, the physician should, in such instances,”
s a1 patify the patient cbout.the lim imits.o € confidentiality in advance < of F asking such question: eg
oe ze ‘ ee i ,

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* (based on the patient's own disclosure of test results. or on documented test read) ther
‘ the patient is infected with HIV, the physician should advise and work with the patient —
_cither to obtain agreement to terminate behavior that places other persons at risk of

 

 
 

 

 

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infection or te notify identifiable individuals who may be at continuing risk of exposure.
If a patient refuses to agree to change behavior or to notify the per

son(s) at risk, or the

physician has good reason to believe that the patient has failed to or is unable to comply
with this agreement, it is ethically permissible for the physician to notify an identifiable

rer ee
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American
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_ SYNOPSIS OF AIDS ACTIVITIES

 

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1400 K Street, N.W.
Washington, D.C. 20005
Telepttone: (202) 682-6000

Component Structure
-Initial activities in Committee on Gay, Lesbian and Bisexual Issues, 1982

-Sub-Committee established in 1985

~Sub-Committee becomes Task Force in 1986

-Dr. Ro»inowitz receives NIMH AIDS Education contract in 1 1986

-Board of Trustees establishes Ad Hoc Committee on AIDS Policy in 1987

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

WiAN INQ o. BOARD OF

Robinowi tz COUNCIL ON | TRUSTEES
MATL AFFAIRS

Aios EDUC. CATE. PSYCH AOD HOC CHTE.
PROJECT L... ASPECTS AlDS AIOS POLICY
-Bonnage “"" Or. Nichols Or. Pasnau
-§Svoboda
-Char les

 

 

 

Education Project ne
Material Development:

o AIDS Primer (medical and neuropsychiatric overview)

o Training Modules (10 completed: immunology, virology, HIV, etc)

o Cause Management Units (topical vignettes and discussion; in preparation)
o Audio-Visual Educational Resource Listing

o Fect Sheet on AIDS (patient/family information, for the lay public)

Educational Programs (Completed)
_o APA Annual Meeting booth and presentations by Committee members

o Participation in ADAPA Annual Meeting

o Participation in program: Norfolk, Naval Hospital

o Cooperative program: Bay State Medical Center, Springfield, MA

o District Branch Programs:
-Vermont Psychiatric + Vermont Medical Society (with Grand Rounds)
-Indiana Psychiatric : Indiana Medical Society (with Grand Rounds)

© Institute on Hospital and Community Psychiatry, Boston, MA re

 

 
 

 

Educational Programs (Next six months) m

o New Orleans, LA; day and a half program with Depts. of Psychiatry

o Dallas, TX; day and a half program for District Branch and local groups

o Portland, OR; day long program for District Branch

o Albuquerque, NM; day long program with psychiatric and medical societies
o Madison, WI; two day program with psychiatry department, Univ. Wisc.

o APA Annual Meeting (Montreal, PQ) }

-Booth in Member Resource Area

-Presentations by Committee members
-AIDS Resource Center: 2 days of presentations, consultations, exhibits

Educational Programs (In planning stages)
o San Diego, California
o Denver, Colorado
o St. Louis, Missouri
o Philadelphia, Pennsylvania
o Hospital and Community Psychiatry Institute, New Orleans, LA

Linkages/Coalitions
-AMA Advisory Committee on AIDS (9 specialty societies)

o Quarterly meetings to share information and resources

o Serves as advisory group to AMA AIDS activities
-AHA Hospital Coalition on AIDS

o Periodic meetings to share information on policy and guidelines
-NIMH Contractors

o S8university based educational programs funded by NIMH

Other Services
-Provides materials for individuals and agencies involved in education
Provides speakers for educational events
-Consultation for program planning for AIDS education
«Provides referrals to psychiatrists experienced in HIV disease
-Serves as contact point for APA District Branch AIDS activities
-Develops and maintains roster of experienced individuals

8 December 1937

 

 
 

 

AMERICAN PSYCHIATRIC ASSOCIATION
AIDS EDUCATION PROJECT

AIDS PRIMER

Washington, D.C.
1987

 

 

 
 

 

The opinions expressed herein are the views of the authors and do not necessarily reflect the
official position of the National Institute of Mental Health or any other part of the U.S.
Department of Health and Human Services.

This publication was written by the AIDS Education Project of the American Psychiatric

Association, Washington, D.C., under contract number 278-87-0002(ES) from the National
Institute of Mental Healt.

é

 

 
 

 

FOREWORD

Recognition of the major impact of the AIDS epidemic prompted the American
Psychiatric Association to address the challenges presented to the field. Infection with the
Human Immunodeficiency Virus can cause organic and functional psychiatric disorders in
addition to othet medical disorders. Psychiatrists must be prepared to assume responsibility
for the care of HIV patients and to work with other medical colleagues in providing
comprehensive treatment.

In 1986, the Association, with support from the National Institute of Mental Health,
established an AIDS Education Project to provide education through conferences and
training materials to assist psychiatrists in meeting the challenges of HIV disease. This
volume was developed by the Project Steering Committee to provide an overview of the
major issues that psychiatrists confront in the care of AIDS patients. While it is primarily
intended to augment the skills gained at APA AIDS education conferences, it also can be
used independently.

I wish to acknowledge with much appreciation the contributions of colleagues who
prepared chapters for this volume and the assistance given by other members of the APA
Committee on the Psychiatric Aspects of ‘AIDS, which also serves as the Steering
Committee for the AIDS Education Project. Despite heavy schedules and multiple
demands, these psychiatrists have assumed the responsibility of providing leadership for the
Association in its efforts to combat AIDS. Their dedication will affect us and our patients
in the years to come.

_ Carolyn B. Robinowitz, M.D.

Deputy Medical Director |
*  " Director, AIDS Education Project

December 1987 -

 

 
 

 

TABLE OF CONTENTS

Why a Mental Health Primer on Aids is Needed ................+.---

James Strain, M.D.
Stuart Nichols, M.D.

What is Aids ........ 0. ccc cc ccc ccc ccc ce rec eee eee cee eccerees

Joyce Johnson, D.O.

Immunology and Virology ..............sscceecscccereeccceeceees

Francisco Fernandez, M.D.

Epidemiology and Other Medical Aspects of AIDS ................-:-

Francisco Fernandez, M.D.

Psychiatric Complications in HIV-Related Illnesses ...............---

Francisco Fernandez, M.D.

Prevention of HIV Infection and Disease ............... 2c cece eecees

David G. Ostrow, M.D., Ph.D.

eevee evee ee ei

 

 

1-1

3-1

4-|

3-1

 
 

 

 

WHY A MENTAL HEALTH PRIMER
ON AIDS IS NEEDED

James Strain, M.D.
Stuart Nichols, M.D. !

Human immunodeficiency virus (HIV) infection, particularly acquired immunodeficien-
cy syndrome (AIDS), the most severe form of HIV infection, continues to spread and to
show devastating emotional and neuropsychiatric components.

This primer on AIDS is being prepared to help psychiatrists and mental health
professionals understand this pandemic disease and meet the multiple challenges it poses.

AIDS is often thought of as a ‘“‘physical”’ illness with secondary emotional adjustments.
The interplay between its physical and emotional components is, however, much more
complex and difficult to categorize. It offers a valuable opportunity to understand the
importance of psychoneuroimmunology, a megasystem of human functioning.

Could it be that psychological toughness and balance, for instance, improves not only the
quality of life but also the length of survival? We know that the HIV virus attacks the brain
directly, but how this affects an individual’s psychological, neurological, and
immunological systems can still not be precisely pinpointed. Psychiatrists, therefore, have
become essential components of the AIDS treatment team, and their role promises to be
even more important as new drugs allow patients to live longer without the hope—to this
point at least—of a cure.

There are other reasons why psychiatrists must be involved. The prevention of HIV
transmission can be accomplished only by changing complex pleasure-related behaviors.
Psychological expertise is needed in this important undertaking.

in addition, AIDS has a strong emotional impact on a wide segment of the population:
patients, their loved ones and caretakers, and especially individuals who view
themselves—in many cases incorrectly—to be free from the risk of HIV infection. .

There are thus compelling reasons for all mental health practitioners to understand both
the pathophysiology and the psychological impact of this virus and the clinical syndromes it
produces.

American Psychiatric Association AIDS Primer | Jel

 

 
 

1-2 American Psychiatric Association AIDS Primer

 

As the disease increases in number and geographical distribution, psychiatrists are likely
to encounter its functional presentations as well as psychological reactions to organic
central nervous system (CNS) infection.

Initially, AIDS may produce a subtle cognitive deficit characterized by memory loss,
impaired problem-solving or abstracting ability (1), or frank organic mental disorder for
some patients. For other patients, diffuse psychological symptoms suggestive of
somatization phenomena, acute anxiety, or a depressive disorder may signal the presence of
AIDS.

A psychiatrist’s skill in evaluating the interplay of biological, psychological, and social
factors may be necessary to ensure that an organic etiology is not overlooked, especially
since psychiatric reactions: may be superimposed on organic symptomatology. The
diagnostic process used by psychiatrists based on DSM-III requires the evaluation of
multiple factors (e.g., personality type, state of health, recent stressors, intelligence, etc.)
that may, along with the presenting symptomatology, contribute to the clinical picture.

The use of antidepressants, anxiolytics, or neuroleptics in the physically ill requires
specialized clinical judgment-to assess the effects of polypharmacy. With the exercise of
vigilance, psychotropic medication, along with counseling and hospice care, is often very
helpful in the treatment of AIDS patients.

In addition, psychiatrists and mental. health professionals can offer valuable assistance in
the management of terminally ill patients (4). ;

Individuals who are seropositive or who have been exposed to HIV must deal with
enormous uncertainty and require a different level of services. They often benefit from
psychotherapy.

A large proportion of those infected with the virus, whether or not they show symptoms
of AIDS, confront thoughts of suicide at some point. Assessment of suicidality is a complex
task in those with HIV infection. Although suicidal thoughts are common in patients facing
an illness that is likely to be terminal, data from several locations show that suicide attempts
and completed acts occur more frequently among individuals with HIV-related disorders
than among cancer patients (5). Given the devastation that AIDS has wrought, this finding
is not a surprise.

As with other fatal illnesses an ethical dilemma that may arise and on which caregivers
may be asked for guidance is the issue of rational suicide.

All mental health caregivers may also have to wrestle with such ethical issues as, for
example, the extent to which they should urge patients to make decisions about signing ‘‘do
not resuscitate’’ orders, or whether the refusal of medical treatment is an ‘‘acceptable’’
form of suicide.

To work effectively with persons who have HIV disease psychiatrists and mental health
professionals must also, understand, the gay community, the world of the drug addict, and
the sociocultural features unique to- black or Hispanic patients. They must appreciate the

 

 

 

 
 

American Psychiatric Association AIDS Primer 1-3

 

effect that revealing one’s homosexuality, addiction, or sexual infidelity has on patients and
their loved ones.

These caregivers must help their patients deal with fears of contagion and the possibility
of being ostracized, humiliated, and abandoned.

Families need help too, both biologic families and, particularly in the gay community,
‘Sfamilies of choice.”’

Women of child-bearing age need to know how HIV may affect their unborn children.

Those who are infected with the HIV virus who are also sexually active should be taught,
and encouraged to practice, safe sexual activity to reduce the risk of transmitting the virus.
Mental health professionals are vital resources in this education effort. They provide
complete and accurate information on safe and unsafe sexual practices to all their patients,
including those who are not infected with the virus.

In addition, with a substantial body of knowledge about HIV infections these
professionals can intervene with community and other organizations on behalf of AIDS
patients and persons close to them, help them master their fears, and help them understand
that household contact does not transmit the virus; sexual intercourse, contact with con-
taminated blood, and mother-to-fetus transmission are the only ways it can be passed (6).

They also have a crucial role in helping patients and their loved ones endure the
discrimination to which they may be subjected and in facilitating the bereavement process.

Another area psychiatrists and mental health professionals will need to consider is the
benefits and risks of serologic testing for HIV. They should be prepared to answer such
questions as: Under what conditions will testing reduce anxiety and for how long? When
will it contribute to depression, suicide, or dangerous behavior? How can confidentiality be
assured? Are seropositive individuals likely to face discrimination in housing, employment,
insurance, education, and social acceptance?

Mental health professionals also have an obligation to counteract inappropriate reactions
to HIV disease in public policies.

An important task for medical personnel is to examine prejudices they have that may
interfere with patient care.

When treating persons with AIDS, caregivers need to manage their own feelings about
contagion as well as find a way to cope with the stresses of such a devastating illness (4).
HIV patients will challenge their sense of therapeutic competency and pose complex
diagnostic and treatment dilemmas. Psychiatrists must differentiate, for example, between
dementia and pseudodementia (depression), pseudodepression (organic affective disorder),
and depressive states secondary to drugs or CNS lesions (7,8).

Traditional methods for dealing with the total treatment process may have to be
reexamined if mental health care providers are to deliver the most effective level of care to
persons touched by this epidemic.

 

 
 

1-4

American Psychiatric Association AIDS Primer

 

It is hoped that this Primer will help resolve many questions related to HIV infection and
contribute to future educational efforts within the mental health arena.

REFERENCES

Holland, J.C.B. and Tross, S.: ‘‘Psychological and Neuropsychiatric Sequellae of the
Acquired Immune Difficiency Syndrome and Related Disorders,’’ Annals of Internal
Medicine, Vot. 103 (1985). p. 760-764.

Strain, J.J. and Grossman, S.: ‘‘Organic Precipitants of Psychological Care of the
Medicaily Ill: A Primer of Liaison Psychiatry.’’ Appleton-Century-Crofts, New York,
1975. pp. 37-53.

Holland, J.C.B. and Tross, S.: ‘‘Psychological and Neuropsychiatric Sequellae of the
Acquired Immune Difficiency Symdrome and Related Disorders,’ Annals of Internal

_ Medicine, Vol. 103 (1985). p. 760-764.

Spikes, J. and Holland, J.C.B: ‘‘The Physicians Response to the Dying Patient.”’ In
Strain, J.J. and Grossman, S.: Psychological Care of the Medically Ill: A Primer in
Liaison Psychiatry. Appleton-Century-Crofts, New York, 1975. pp.138-148.

Strain, J.J. and Fulop, G.: Experience with HIV Patients in General Hospital from a
Databased Information System.

Friedland, G. H , Salzman, B.R., and Rogers M.F. et. al.: ‘“‘Lack of Household
Transmission of HTLV-III Infection,’’ New England Journal of Medicine, 1986.

Strain, J.J.: Diagnostic Considerations in the Medical Setting. The Psychiatric Clinics
of North America, 4: 287-300, 1981.

Klerman, G.L.: Depression in the Medically Ill. The Psychiatric Clinics of North
America, 4: 301-318, 1981.

 

 

 
 

 

WHAT IS AIDS

Joyce Johnson, D.O.. DL

' .

ye INTRODUCTION 3h ae

AIDS is an acronym for acquired immunodeficiency syndrome. The complex was first
recognized in the spring of 1981 when an unusual type of pneumonia caused by the parasite
‘+ Pneumocystis carinii ‘was ‘diagnosed in five otherwise healthy gay men in Los Angeles,
California. This was followed by reports of a similar outbreak of pneumocystis pneumonia
and, Kaposi’s sarcoma in New York. Review of the case register for pentamidine; an
’ investigational drug used to treat-pneumocystis pneumonia, identified an increase in drug
requests and additional cases of this pneumonia ‘in young men and women in other parts of
the country. At that time the syndrome had not yet. been fully described and.little was
known about it. Some thought it was a response to a toxin.or metabolic imbalance while
_ others suspected an infectious origin. ;

The Centers for Disease Control (CDC) developed a ‘case definition for ‘surveillance
purposes so that more could be learned about the syndrome through study of its
“e epidemiology. This early case definition recognized a person as having AIDS if (s)he had an
otherwise unexplainable immune deficiency, as evidenced by pathologic confirmation of
’ any one of a list of opportunistic infections or tumors. Thus, persons meeting these criteria
were labeled as ‘‘AIDS’’ patients and began to be reported to the national center as the
various states made AIDS a reportable disease. The case reports were assembled by the
CDC and surveillance data were analyzed and published.

Much has been learned about AIDS since it was first recognized in 1981. In 1983-84, Dr.
Luc Montagnier and his colleagues in France and Dr. Robert Gallo and his colleagues in the
United States identified a virus found to be the cause of AIDS. This virus has variously been
called lymphadenopathy virus (LAV), human T-cell lymphotropic virus, Type III
(HTLV-III), and has now-been officially designated human immunodeficiency virus (HIV)
and is often casually referred to as the ‘‘AIDS virus.”’

A serologic test for antibodies to HIV was developed and approved by the U.S. Food and
Drug Administration in March 1985 for screening donated blood. Epidemiologic studies

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2-2 American Psychiatric Association AIDS Primer

 

utilizing the test confirmed what many had hypothesized for a long time—that HIV
infection can present as a spectrum of diseases ranging from an asymptomatic carrier state
to a fatal disease meeting the AIDS surveillance definition.

Several formal nomenclature systems have been developed for this spectrum of illness
including the CDC surveillance case definition for adults and children, CDC classification
system, Walter Reed staging system, INAPEN classification of brain manifestations, and
the WHO case definition. Less formal nomenclature (ARC, lymphadenopathy syndrome,
etc.) has also evolved.

CDC SURVEILLANCE CASE DEFINITION

The CDC case definition was developed for surveillance purposes early in the outbreak so
that more could be learned about the epidemiology of HIV infection, and as more has
become known, the definition has evolved accordingly. The term ‘‘AIDS’’ identifies
persons with the most serious, fatal form of the immune deficiency and subsequent clinical
disease, i.e., opportunistic infector or tumor. Although most persons infected with HIV do
not meet this case definition, and thus do not have AIDS, persons with illnesses meeting this
case definition should be reported to the local or state health department, as is required by
law in most jurisdictions. In August 1985 a surveillance definition for children with AIDS
was published. The definition for children was parallel to that for adults, although
additional pediatric primary and secondary immunologic problems were excluded from the
definition for children and the range of opportunistic infections and tumors varies slightly.
Appendix A and Appendix B contain the current case definitions for adults and children

(1).
CDC CLASSIFICATION SYSTEM

In May 1986 the CDC published a classification system for the spectrum of illness caused
by HIV. This classification system includes four groups: acute infection, asymptomatic
infection, persistent generalized lymphadenopathy, and other disease. The ‘‘other disease’’
category of five subgroups encompasses the opportunistic infections and tumors which
define AIDS. It also includes constitutional and neurologic diseases as well as other
conditions (2).

WALTER REED STAGING SYSTEM

The Walter Reed staging system for HIV infection was published in 1986. It outlines a
seven-stage system designated: progressively as stages WRO through WR6. WRO identifies

 
 

American Psychiatric Association AIDS Primer 2-3

 

high risk contacts (such as sexual partners or transfusion recipients of known HIV infected
individuals). Persons classified as WRO may or may not themselves be infected; the other
stages are reserved for persons with confirmed HIV infection. Additional designations
identify persons with symptoms, Kaposi’s sarcoma, neurologic disease, etc. This system
was developed primarily for use by the Army, through it may come into more generalized
use (3).

NIH STAGING SYSTEM

The National Institutes of Health (NIH) developed a seven-category stratification system
for use by researchers designing clinical trials. Clinical trials generally involve comparing
the outcome of different treatment protocols in two or more cohorts of patients. The
staging schema was developed to better assure comparability of patients and cohorts. This
system, like several others, includes a range of clinical presentations from asymptomatic
infection to CDC case definition AIDS (4). ,

{

INAPEN CLASSIFICATION OF BRAIN MANIFESTATIONS OF HIV

The International AIDS Prospective Epidemiology Network (INAPEN) developed a
more detailed classification of neurologic consequences of HIV infection, based on the
CDC classification category IV B. The INAPEN classification system includes two broad
categories: central and peripheral nervous system disorders. Central nervous system (CNS)
disorders include the AIDS dementia complex, acute atypical meningitis, and myelopathy.
The peripheral nervous system (PNS) disorders include painful sensory neuropathy and
inflammatory demyelinating polyneuropathies. These classifications will probably be
expanded as more is known about the neurologic effects of HIV infection (5).

WHO CASE DEFINITION

Since AIDS has become an international problem, the World Health Organization
(WHO) developed a surveillance case definition appropriate for use in developing countries
where complex immunologic and pathologic diagnostic procedures are not available. The
definition is based on the CDC surveillance definition, except that a case can be diagnosed
based on clinical signs and symptoms rather than requiring a pathologic diagnosis (6).

OTHER

Numerous other terms have evolved to identify various clinical syndromes associated
with AIDS. These include lymphadenopathy syndrome (LAS), pre-AIDS, AIDS-related

 

 
 

2-4 American Psychiatric Association AIDS Primer

 

complex (ARC), asymptomatic AIDS, etc. Although the terms have gained widespread use,
generally accepted definitions of the terms have not. They basically refer to a syndrome
including one or more of the following symptoms: persistent lymphadenopathy (in multiple
sites), fever, malaise, diarrhea, weight loss and/or anorexia. Terms such as ARC and LAS
are used by many patients and because they are not clearly defined frequently lead to
confusion. Mental health professionals should recognize these terms, and realize that
though they refer to various clinical manifestations of HIV infection, they are not ‘‘AIDS.”’
Though these patients should be viewed as potentially infectious for prevention purposes,
and infection control recommendations for these patients (regarding sexual activity, needle
sharing, etc.) is the same as for AIDS patients, patients with these lesser symptoms may
have a better short-term prognosis.

SIGNIFICANCE FOR MENTAL HEALTH PROFESSIONALS

The nomenclature for the various clinical presentations of HIV disease continually
changes to reflect new knowledge about and a better understanding of the disease. For the
mental health professional, several definitional issues are of particular importance.

1. Therapeutic Issues

The ambiguity of definition and labeling the spectrum of HIV infection creates special
problems for the mental health professional who focuses on the patient’s emotional
condition, which can be greatly affected by the specific labeling of the patient’s illness, e.g.,
the emotional response to an ARC diagnosis may differ from the fears and feelings about
an AIDS diagnosis. However, the specific diagnosis may not actually be of as great
significance as the patient’s clinical condition, since the focus of therapy is to help the
patient better understand his or her feelings. Mental health professionals should become
knowledgeable about the terminology in use, so that they can best help the patient to
understand and deal with the illness.

2. Prevention and Infection Control Issues

Since the prevention recommendations are the same for the entire spectrum of HIV
diseases, the patient’s specific classification or diagnosis (AIDS, ARC, etc.) does not
usually have clinical importance, from an infection control perspective. The prevention
behaviors appropriate for the individual patient should be discussed in a format which both
explains facts and encouragés expréssion of feelings.

 

 

 
 

 

American Psychiatric Association AIDS Primer r . 2-5

 

3. Treatment and Prognosis

The treatment of patients infected with HIV varies with the patient’s individual condition;
national standards of practice have not been established based on any of the classification
systems. Although patients with CDC case definition AIDS have a grave prognosis, very ill
patients who do not meet that definition may have a similar prognosis. Furthermore, at this
time, little can be said with certainty about the long-term (greater than five years) prognosis
of patients with other clinical presentations of the infection.

4. Reporting

AIDS is a reportable disease in nearly all jurisdictions. However, the less severe illnesses
on the spectrum of HIV infection are not generally reportable. Therefore, a clinician must
be able to recognize AIDS, as defined by the Centers for Disease Control for surveillance
purposes, so that the disease can be appropriately reported.

CONCLUSIONS

AIDS, then, is the most serious and generally fatal manifestation of HIV disease. It is
characterized by a decrease in immunity (due to direct HIV viral effects on the immune
system). This decreased immunity then makes one susceptible to a range of opportunistic
infections and tumors. These secondary infections and tumors are the hallmark of AIDS.
Approximately one third of those infected with HIV develop AIDS within five years. The
remaining two-thirds of patients have a spectrum of illness ranging from asymptomatic
carriers to those who are Clinically as ill as AIDS patients. The entire spectrum of HIV
disease has been classified in several different ways. At present, these classification systems
focus primarily on the medical aspects and are ever-changing as more is learned about this
disease. No generally accepted classification system has yet been devised for the spectrum of
psychiatric disorders related to HIV disease. A combined neuropsychiatric and
psychosocial classification system is much needed, since it is frequently difficult for the
mental health professional to distinguish the organic and social effects of this disease.

 

 
 

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REFERENCES

CDC. Revision of the CDC Surveillance Case Definition for Acquired
Immunodeficiency Syndrome. MMWR 1987 August 14;36;3S-15S.

CDC. Classification System for Human T-Lymphotropic Virus Type
II]/Lymphadenopathy-Associated Virus Infections. MMWR 1986 May 23;35:334-
339.

Redfield R.R., Wright D.C., and Tramont E.C.: The Walter Reed Staging
Classification for HTLV-III/LAV Infection. New England Journal of Medicine,
1986 January 9;314 (2):131-132.

Haverkos H.W., Gotlieb M.S., Killen J.Y., Edelman R.: Classification of
HTLV-III/LAV-Related Diseases. The Journal of Infectious Diseases, 1985
November; 152(5):1095.

Ostrow D.G., Solomon S.L., Mayer K.H., Haverkos H, Redfield, R.R.: Defining the
Clinical Spectrum of HIV Infection in Adults. (Unpublished, fourth draft, December
3, 1986.)

WHO. WHO Clinical Case Definition. Weekly Epidemiological Record 1986
(10):69-73.

 

 
 

American Psychiatric Association AIDS Primer 2-7

 

 

APPENDIX A
CDC Surveillance Case Definition

The following revised case definition for surveillance of acquired immunodeficiency
syndrome (AIDS) was developed by CDC in collaboration with public health and clinical
specialists. The Council of State and‘ Territorial Epidemiologists (CSTE) has officially
recommended adoption of the revised definition for national reporting of AIDS. The
objectives of the revision are a) to track more effectively the severe disabling morbidity
associated with infection with human immunodeficiency virus (HIV) (including HIV-1 and
HIV-2); b) to simplify reporting of AIDS cases; c) to increase the sensitivity and specificity
of the definition through greater diagnostic application of laboratory evidence for HIV
infection; and d) to be consistent with current diagnostic practice, which in some cases
includes presumptive, i.e., without confirmatory laboratory evidence, diagnosis of
AIDS-indicative diseases (e.g., Pneumocystis carinii pneumonia, Kaposi’s sarcoma).

The definition is organized into three sections that depend on the status of laboratory
evidence of HIV infection (e.g., HIV antibody) (Figure 1). The major proposed changes
apply to patients with laboratory evidence for HIV infection: a) inclusion of HIV
encephalopathy, HIV wasting syndrome, and a broader range of specific AIDS-indicative
diseases (Section II.A); b) inclusion of AIDS patients whose indicator diseases are
diagnosed presumptively (Section II.B); and c) elimination of exclusions due to other causes
of immunodeficiency (Section 1.A).

Application of the definition for children differs from that for adults in two ways. First,
multiple or recurrent serious bacterial infections and lymphoid interstitial pneumonia/-
pulmonary lymphoid hyperplasia are accepted as indicative of AIDS among children but
not among adults. Second, for children <15 months of age whose mothers are thought to
have had HIV infection during the child’s perinatal period, the laboratory criteria for HIV
infection are more stringent, since. the presence of HIV antibody in the child is, by itself,
insufficient evidence for HIV infection because of the persistence of passively acquired
maternal antibodies <15 months after birth.

The new definition is effective immediately. State and local health departments are
requested to apply the new definition henceforth to patients reported to them. The
initiation of the actual reporting of cases that meet the new definition was targeted for
September |, 1987, when modified computer software and report forms were to be in place
to accommodate the changes. CSTE has recommended retrospective application of the
revised definition to patients already reported to health departments. The new definition
follows:

 
 

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1987 REVISION OF CASE DEFINITION FOR AIDS
FOR SURVEILLANCE PURPOSES

For national reporting, a case of AIDS is defined as an illness characterized by one or
more of the following ‘‘indicator’’ diseases, depending on the status of laboratory evidence

of HIV infection, as shown below.

I. Without Laboratory Evidence Regarding HIV Infection
If laboratory tests for HIV were not performed or gave inconclusive results (See
Appendix I) and the patient had no other cause of immunodeficiency listed in Section I.A
below, then any disease listed in Section I.B indicates AIDS if it was diagnosed by a
definitive method (See Appendix II). .
A. Causes of immunodeficiency that disqualify diseases as indicators of AIDS in the
absence of laboratory evidence for HIV infection

l.

high-dose or long-term systemic corticosteroid therapy or other immuno-
suppressive/cytotoxic therapy <3 months before the onset of the indicator
disease

any of the following diseases diagnosed <3 months after diagnosis of the
indicator disease: Hodgkin’s disease, non-Hodgkin’s lymphoma (other than
primary brain lymphoma), lymphocytic leukemia, multiple myeloma, any
other cancer or lymphoreticular or histiocytic tissue, or angioimmunoblastic
lymphadenopathy

a genetic (congenital) immunodeficiency syndrome or an acquired
immunodeficiency syndrome atypical of HIV infection, such as one
involving hypogammaglobulinemia

B. Indicator diseases diagnosed definitively (See Appendix II)

l.

2.
3.
4

candidiasis of the esophagus, trachea, bronchi, or lungs

cryptococcosis, extrapulmonary

cryptosporidiosis with diarrhea persisting > 1 month

cytomegalovirus disease of a organ other than liver, spleen, or lymph nodes
in a patient > 1 month of age

herpes simplex virus infection causing a mucocutaneous ulcer that persists
longer than 1 month; or bronchitis, pneumonitis, or esophagitis for any
duration affecting a patient > 1 month of age

Kaposi’s sarcoma affecting a patient < 60 years of age

lymphoma of the brain (primary) affecting a patient <60 years of age
lymphoid interstitial pneumonia and/or pulmonary lymphoid hyperplasia
(LIP/PLH complex)ffecting a child <13 years of age

 
 

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American Psychiatric Association AIDS Primer 2-9

 

1.

 

aS

10.
i.
12.

Mycobacterium avium complex or M.. kansasii disease, disseminated (at a
site other than or in addition to lungs, skin, or cervical or hilar lymph nodes)
Pneumocystis carinii pneumonia

progressive multifocal leukoencephalopathy |

toxoplasmosis of the brain affecting a patient > 1 month of age

Il. With Laboratory Evidence for HIV Infection ;

Regardless of the presence of other causes of immunodeficiency (I.A), in-the presence
of laboratory evidence for HIV infection (See Appendix I), any disease listed above (I.B) or
below (II.A or II.B) indicates a diagnosis of AIDS.

A. Indicator diseases diagnosed definitively (See Appendix II)

bacterial infections, multiple or recurrent (any combination of at least two
within a 2-year period), of the following types affecting a child < 13 years of
age:
septicemia, pneumonia, meningitis, bone’or joint infection, or abscess of
an internal organ or body cavity (excluding otitis media or superficial
skin or mucosal abscesses), caused by Haemophilus, Streptococcus
(including pneumococcus), or other pyogenic bacteria
coccidioidomycosis, disseminated (at a site other than or in addition to
lungs or cervical or hilar lymph nodes)

HIV encephalopathy (also called “HIV dementia,’’ ‘‘AIDS dementia,’’ or

‘‘subacute encephalitis due to HIV’’) (See Appendix II for description)

histoplasmosis, disseminated (at a site other than or in addition to lungs or

cervical or hilar lymph nodes) — ,

isosporiasis with diarrhea persisting > 1 month

Kaposi’s sarcoma at any age

lymphoma of the brain (primary) at any age’

other non-Hodgkin’s lymphoma of B-cell or unknown immunologic

phenotype and the following histologic types:

a. small noncleaved lymphoma (either Burkitt or non-Burkitt type) (See
Appendix IV for equivalent terms and numeric codes used in the
International Classification of Diseases, Ninth Revision, Clinical
Modification)

b. immunoblastic sarcoma (equivalent to any of the following, although
not necessarily all in combination: immunoblastic lymphoma,
large-cell lymphoma, diffuse histiocytic lymphoma, diffuse undif-
ferentiated lymphoma, or highgrade lymphoma) (See Appendix IV for.

 

 
 

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Ainerican Psychiatric Association AIDS Primer

 

equivalent terms and numeric codes used in the J/nternational
Classification of Diseases, Ninth Revision, Clinical Modification)

Note: Lymphomas are not included here if they are of T-cell immunologic phenotype or
their histologic type is not described or is described as ‘‘lymphocytic,’’ ‘‘lymphoblastic,”’
‘*small cleaved,’’ or ‘‘plasmacytoid lymphocytic’’

9.

10.

11.
12.

any mycobacterial disease caused by mycobacteria other than M.
tuberculosis, disseminated (at a site other than or in addition to lungs, skin,
or cervical or hilar lymph nodes)

disease caused by M. tuberculosis, extrapulmonary (involving at least one
site outside the lungs, regardless of whether there is concurrent pulmonary
involvement)

Salmonella (nontyphoid) septicemia, recurrent

HIV wasting syndrome (emaciation, ‘‘slim disease’) (See Appendix II for
description)

Indicator diseases diagnosed presumptively (by a method other than those in
Appendix II)

Note: Given the seriousness of diseases indicative of AIDS, it is generally
important to diagnose them definitively, especially when therapy that would be
used may have serious side effects or when definitive diagnosis is needed for
eligibility for antiretroviral therapy. Nonetheless, in some situations, a patient’s
condition will not permit the performance of definitive tests. In other situations,
accepted clinical practice may be to diagnose presumptively based on the
presence of characteristic clinical and laboratory abnormalities. Guidelines for
presumptive diagnoses are suggested in Appendix III.

wn

candidiasis of the esophagus

cytomegalovirus retinitis with loss of vision

Kaposi’s sarcoma

lymphoid interstitial pneumonia and/or pulmonary lymphoid hyperplasia
(LIP/PLH complex) affecting a child < 13 years of age

mycobacterial disease (acid-fast bacilli with species not identified by
culture), disseminated (involving at least one site other than or in addition to
lungs, skin, or cervical or hilar lymph nodes)

Pneumocystis carinii pneumonia

toxoplasmosis of the brain affecting a patient > 1 month of age

4
‘

 

 
 

 

American Psychiatric Association AIDS Primer 2-11

HI. With Laboratory Evidence Against HIV Infection
With laboratory test results negative for HIV infection (See Appendix I), a
diagnosis of AIDS for surveillance purposes is ruled out unless:
A. all the other causes of immunodeficiency listed above in Section I.A are
excluded; AND
B. the patient has had either:

1. Pneumocystic carinii pneumonia diagnosed by a definitive method
(See Appendix II); OR

2a. any of the other diseases indicative of AIDS listed above in Section I.B
diagnosed by a definitive method (See Appendix II); AND

2b. a T-helper/inducer (CD4) lymphocyte count <400/mm’.

 
 

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APPENDIX B
Classification System for Human Immunodeficiency Virus (HIV) Infection
| in Children Under 13 Years of Age

With the identification of the causative agent of the acquired immunodeficiency
syndrome (AIDS), a broad spectrum of clinical manifestations has been attributed to
infection with the human immunodeficiency virus (HIV). With the exception of the CDC
surveillance definition for AIDS (1,2), no standard definitions for other manifestations of
HIV infection have been developed for children. Classification systems published to date
have been developed primarily to categorize clinical presentations in adult patients and may
not be entirely applicable to infants and children (3-5).

Physicians from institutions caring for relatively large numbers of HIV-infected children
report that only about half of their patients with symptomatic illness related to the infection
fulfill the criteria of the CDC surveillance definition for AIDS (6,7).

To develop a classification system for HIV infection in children, CDC convened a panel
of consultants* consisting of clinicians experienced in the diagnosis and management of
children with HIV infection; public health physicians; representatives from the American
Academy of Pediatrics, the Council of State and Territorial Epidemiologists, the
Association for Maternal Child Health and Crippled Children’s Programs, the National
Institute on Drug Abuse/Alcohol, Diseases/National Institutes of Health, and the Division
of Maternal and Child Health/Health Resources and Services Administration; and CDC.

GOALS AND OBJECTIVES OF THE CLASSIFICATION SYSTEM

The system was designed primarily for public health purposes, including epidemiologic
studies, disease surveillance, prevention programs, and health-care planning and policy.
The panel attempted to devise a simple scheme that could be subdivided as needed for
different purposes.

DEFINITION OF HIV INFECTION IN CHILDREN (Table 1)

Ideally, HIV infection in children is identified by the presence of the virus in blood or
tissues, confirmed by culture or other laboratory detection methods. However, current
tests—including culture—for detecting the virus or its antigens are not standardized and are
not readily available. Detection of specific antibody to the virus is a sensitive and specific
indicator of HIV infection in adults, since the majority of adults with antibody have had
culture evidence of infection (8-10). Similar studies involving children have not been
reported. Also, the presence of passively transferred maternal antibody in infants limits the
interpretation of a positive antibody test result in this age group. Most of the consultants
believed that passively transferted maternal HIV antibody could sometimes persist for up to

 

 
 

 

American Psychiatric Association AIDS Primer 2-13

 

15 months. For this reason, two definitions for infection in children are needed: one for
infants and children up to 15 months of age who have been exposed to their infected
mothers perinatally, and another for older children with perinatal infection and for infants
and children of all ages acquiring the virus through other means.

TABLE 1. Summary of the definition of HIV infection in children
Infants and children under 15 months of age with perinatal infection
1) Virus in blood or tissues
or
2) HIV antibody
and
evidence of both cellular and humoral immune deficiency
and
one or more categories in Class P-2
- or
3) Symptoms meeting CDC case definition for AIDS

Older children with perinatal infection and children with HIV infection acquired through
other modes of transmission
1) Virus in blood or tissues
or
2) HIV antibody
. or
3) Symptoms meeting CDC case definition for AIDS

Infants and children under 15 months of age with perinatal infection — Infection in
infants and children up to 15 months of age who were exposed to infected mothers in the
perinatal period may be defined by one or more of the following: 1) the identification of the
virus in blood or tissues, 2) the presence of HIV antibody as indicated by a repeatedly
reactive screening test (e.g., enzyme immunoassay) plus a positive confirmatory test (e.g.,
Western blot, immunofluorescence assay) in an infant or child who has abnormal
immunologic test results indicating both humoral and cellular immunodeficiency (increased
mmunoglobulin levels, depressed T4 [T-helper] absolute cell count, absolute lymphopenia,
decreased T4/T8 ratio) and who meets the requirements of one or more of the subclasses
listed under class P-2 (described below), or 3) the confirmation that a child’s symptoms
meet the previously published. CDC case definition for pediatric AIDS (1,2).

 

 
 

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The infection status of other perinatally exposed seropositive infants and children up to
15 months of age who lack one of the above immunologic or clinical criteria is
indeterminate. These infants should be followed up to HIV-related illness, and they should
be tested at regular intervals for persistence of antibody to HIV. Infants and children who
become seronegative, are virus-culture negative (if blood or tissue samples are cultured),
and continue to have no clinical or laboratory-confirmed abnormalities associated with
HIV infection are unlikely to be infected.

Older children with perinatal infection and children with HIV infection acquired through
other modes of transmission — HIV infection in these children is defined by one or more of
the following: 1) the identification of virus in blood or tissues, 2) the presence of HIV
antibody (positive screening test plus confirmatory test) regardless of whether immunologic
abnormalities or signs or symptoms are present, or 3) the confirmation that the child’s
symptoms meet the previously published CDC case definition for pediatric AIDS (1,2).

These definitions apply to children under 13 years of age. Persons 13 years of age and
older should be classified according to the adult classification system (3).

CLASSIFICATION SYSTEM (Table 2)

Children fulfilling the definition of HIV infection discussed above may be classified
into one of two mutually exclusive classes based on the presence or absence of clinical signs
and symptoms (Table 2). Class Pediatric-1 (P-1) is further subcategorized on the basis of
the presence or absence of immunologic abnormalities, whereas Class P-2 is subdivided by
specific disease patterns. Once a child has signs and symptoms and is therefore classified in
P-2, he or she should not be reassigned to class P-| if signs and symptoms resolve.

Perinatally exposed infants and children whose infection status is indeterminate are
classified into class P-O.

Class P-O. Indeterminate infection. Includes perinatally exposed infants and children up
to 15 months of age who cannot be classified as definitely infected according to the above
definition but who have antibody to HIV, indicating exposure to a mother who is infected.

Class P-1. Asymptomatic infection. Includes patients who meet one of the above
definitions for HIV infection but who have had no previous signs or symptoms that would
have led to classification in Class P-2.

These children may be subclassified on the basis of immunologic testing. This testing
should include quantitative immunoglobulins, complete blood count with differential, and
T-lymphocyte subset quantitation. Results of functional testing of lymphocytes (mitogens,
such as pokeweed) may also be abnormal in HIV-infected children, but it is less specific in--
comparison with immunoglobulin levels and lymphocyte subset analysis, and it may be ~
impractical. cS

 
 

 

American Psychiatric Association AIDS Primer 2-15

 

TABLE 2. Summary of the classification of HIV infection
in children under 13 years of age

Class P-0. Indeterminate infection
Class P-1. Asymptomatic infection
Subclass A. Normal immune function
Subclass B. Abnormal immune function
Subclass C. Immune function not tested
Class P-2. Symptomatic infection
Subclass A. Nonspecific findings
Subclass B. Progressive neurologic disease
Subclass C. Lymphoid interstitial pneumonitis
Subclass D. Secondary infectious diseases
Category D-]. Specified secondary infectious diseases listed in the CDC
surveillance definition for AIDS
Category D-2. Recurrent serious bacterial infections
Category D-3. Other specified secondary infectious diseases
Subclass E. Secondary cancers
Category E-1. Specified secondary cancers listed in the CDC surveillance
definition for AIDS
Category E-2. Other cancers possibly secondary to HIV infection
Subclass F. Other diseases due to HIV infection

Subclass A - Normal immune function. Includes children with no immune abnormalities
associated with HIV infection.

Subclass B - Abnormal immune function. Includes children with one or more of the
commonly observed immune abnormalities associated with, HIV infection, such as
hypergammaglobulinemia, T-helper (T4) !tymphopenia, decreased T-helper/T-
suppressor (T4/T8) ratio, and absolute lymphopenia. Other causes of these
abnormalities must be excluded.

Subclass C - Not tested. Includes children for whom no or incomplete (see above)
immunologic testing has been done.

Class P-2. Symptomatic infection. Includes patients meeting the above definitions for
HIV infection and having signs and symptoms of infection. Other causes of these signs and
symptoms should be excluded. Subclasses are defined based on the type of signs and
symptoms that are present. Patients may be classified in more than one subclass.

 

 
 

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Subclass A - Nonspecific findings. Includes children with two or more unexplained
non-specific findings persisting for more than 2 months, including fever, failure-to-thrive
or weight loss of more than 10% of baseline, hepatomegaly, splenomegaly, generalized
lymphadenopathy (lymph nodes measuring at least 0.5 cm present in two or more sites,
with bilateral lymph nodes counting as one site), parotitis, and diarrhea (three or more
loose stools per day) that is either persistent or recurrent (defined as two or more episodes
of diarrhea accompanied by dehydration within a 2-month period).

Subclass B - Progressive neurologic disease. Includes children with one or more of the
following progressive findings: 1) loss of developmental milestones or intellectual ability,
2) impaired brain growth (acquired microcephaly and/or brain atrophy demonstrated on
computerized tomographic scan or magnetic resonance imaging scan), or 3) progressive
symmetrical motor deficits manifested by two or more of these findings: paresis,
abnormal tone, pathologic reflexes, ataxia, or gait disturbance.

Subclass C - Lymphoid interstitial pneumonitis. Includes children with a histologically
confirmed pneumonitis characterized by diffuse interstitial and peribronchiolar
infiltration of lymphocytes and plasma cells and without identifiable pathogens, or, in
the absence of a histologic diagnosis, a chronic pneumonitis—characterized by bilateral
reticulonodular interstitial infiltrates with or without hilar lymphadenopathy—present
on chest X-ray for a period of at least 2 months and unresponsive to appropriate
antimicrobial therapy. Other causes of interstitial infiltrates should be excluded, such as
tuberculosis, Pneumocystis carinii pneumonia, cytomegalovirus infection, or other viral
or parasitic infections.

Subclass D - Secondary infectious diseases. Includes children with a diagnosis of an
infectious disease that occurs as a result of immune deficiency caused by infection with
HIV.

Category D-1. Includes patients with secondary infectious disease due to one of the
specified infectious diseases listed in the CDC surveillance definition for AIDS:
Pneumocystis carinii pneumonia; chronic cryptosporidiosis; disseminated tox-
oplasmosis with onset after 1 month of age; extra-intestinal strongyloidiasis; chronic
isosporiasis; candidiasis (esophageal, bronchial, or pulmonary); extrapulmonary
cryptococcosis; disseminated histoplasmosis; noncutaneous, extrapulmonary, or
disseminated mycobacterial infection (any species other than leprae); cytomegalovirus
infection with onset after 1 month of age; chronic mucocutaneous or disseminated
herpes simplex virus infection with onset after | month of age; extrapulmonary or
disseminated coccidioidomycosis; nocardiosis; and progressive multifocal leu-
koencephalopathy.» ..4",. 4

 

 
 

American Psychiatric Association AIDS Primer 2-17

 

Category D-2. Includes patients with unexplained, recurrent, serious bacterial
infections (two or more within a 2-year period) including sepsis, meningitis,
pneumonia, abscess of an internal organ, and bone/joint infections.

Category D-3. Includes patients with one other infectious diseases, including oral
candidiasis persisting for 2 months or more, two or more episodes of herpes stomatitis
within a year, or multidermatomal or disseminated herpes zoster infection.

Subclass E - Secondary cancers. Includes children with any cancer described below in
categories E-1 and E-2.

Category E-1. Includes patients with the diagnosis'of one or more kinds of cancer
known to be associated with HIV infection as listed in the surveillance definition of
AIDS and indicative of a defect in cell-mediated immunity: Kaposi’s sarcoma, B-cell
non-Hodgkin’s lymphoma, or primary lymphoma of the brain.

Category E-2. Includes patients with the diagnosis of other malignancies possibly
associated with HIV infection.

Subclass F - Other diseases. Includes children with other conditions possibly due to HIV
infection not listed in the above subclasses, such as hepatitis, cardiopathy, nephropathy,
hematologic disorders (anemia, thrombocytopenia), and dermatologic diseases.

Reported by: AIDS Program, Center for Infectious Diseases, CDC.

 

 
 

 

IMMUNOLOGY AND VIROLOGY

Francisco Fernandez, M.D.

INTRODUCTION

The Acquired Immunodeficiency Syndrome (AIDS) was first recognized in 1981 as a new
condition associated with unexplained immunodeficiency and characterized by oppor-
tunistic infection with organisms such as pneumocystis carinii, atypical mycobacteria, and
cryptococcus neoformans and/or neoplasia, such as Kaposi’s Sarcoma and, less commonly
other neoplasms such as non-Hodgkin’s lymphomas.

The actual virus that causes AIDS was not identified and isolated until 1984 when it was
simultaneously discovered by two groups, one at the NCI who gave it the name Human
T-Cell Lymphotropic HI retrovirus (HTLV-III) and one, a French group, at the Pasteur
Institute who gave it the name Lymphadenopathy-Related Virus (LAV). To end confusion
stemming from the two names, a new term, Human [Immunodeficiency Virus (HIV), is now
used by health officials throughout the world.

Typically, patients infected with HIV demonstrate a spectrum of disturbances ranging
from asymptomatic seropositivity to a defective cellular immunity with cutaneous anergy,
reduced number of T-cells, and decreased ratios of T-4 (helper-inducer) to T-8
(suppressor-cytotoxic) T-cell subsets. Varying alterations in immunoglobulin levels are also
noted.

To help medical personnel assess the effects of HIV infection on host offense
mechanisms, this chapter will provide an overview of clinical immunology and virology
relevant to the psychiatric aspects of HIV-related disease and the neoplasms associated with
this syndrome.

BASIC IMMUNOLOGY

Immunity is often used to refer to the resistance of an individual to reinfection with a
specific agent, but it also encompasses the more general host reactivity to any foreign

American Psychiatric Association AIDS Primer 3-]

 

 
 

3-2 American Psychiatric Association AIDS Primer

 

substance. A contemporary view of immunity includes the physiologic mechanisms that
enable an organism to recognize, neutralize, and eliminate foreign materials without injury
to its own organs. Various cofactors that can affect immune function include genetic,
chronological, metabolic, physiological, microbial, environmental, nutritional and
behavioral factors.

Immunologic reactivity encompasses three basic functions: defense, homeostasis, and
surveillance. Defense is the protection against invasion by microorganisms, and it has been
the major focus of immunology research. Much is known about its basic processes of
inflammation, phagocytosis, and cellular immunity. Homeostasis involves mechanisms that
remove elements damaged by the defense function. Surveillance is the continuing
monitoring of the body for the presence of foreign organisms and abnormal chemicals.

Immunologic functioning is dependent upon the integrity of the lymphoreticular system
which includes the spleen, lymph nodes, and Peyer’s patches in the ileum. In addition to
lymphocytes this system also contains the reticular cells and fibers, plasma cells,
macrophages, eosinophils, and mast cells. The lymphoreticular system includes two
interrelated but functionally separate subsystems that are derived from different embryonic
structures, the thymus-dependent lymphocytes (T-cells) and bone-marrow-derived
lymphocytes (B-cells).

T-Cells (1-3)

T-cells originate from precursor stem cells in the bone marrow, migrate to the thymus
gland in fetal and early postnatal life, and subsequently reside in the peripheral lymph
organs. They normally make up 75% of the pool of circulating lymphocytes and are the
primary cells involved with cell-mediated immunity. T-cells also regulate various immune
responses, influencing both T-lymphocyte and B-lymphocyte activities as well as monocyte
function. Various subtypes of T-cells can be identified by surface proteins on their cell
membranes. One subset of maturing T-cells, called killer cells, develops the ability to lyse
foreign or viral infected cells. Other subsets are primarily concerned with antigen
recognition, or with helping or suppressing the immune response. These variously
differentiated T-cells may predominate in different clinical disorders such as T-cell
lymphoblastic lymphoma, cutaneous T-cell lymphoma, and AIDS (4).

B-Cells (1-3)

Mature B-cells comprise 10%-15% of peripheral lymphocytes. Their primary function is
to produce antibodies when the immune system comes in contact with a foreign antigen.
B-cells may differentiate into antibody-secreting plasma cells or proliferate and become
long-lived memory B-cells. The latter retain the ability to stimulate antibody production
when they are challenged with each reexposure to a previously. known antigen.

 

 
 

American Psychiatric Association AIDS Primer 3-3

 

Immune Mediated Response (1-3)

An immunologically intact individual will react to a foreign substance with both specific
and nonspecific responses. The nonspecific responses include inflammation, fever, a
leukocytosis with an associated ‘‘left shift’? (an increase in the number of immature cells
known as bands), an elevated erythrocyte sedimentation rate, and a mobilization of the
phagocytic cells which eventually ingest and dispose of the foreign substance. Specific
immune responses result from activation of either the T-cells or B-cells. One specific
response, humoral immunity, is mediated by antibodiés that are produced when the B-cells
are activated. Another response, cell-mediated immunity, is generated through the direct
action of activated T-lymphocytes by chemical substances call lymphokines.

Activation of either the humoral or cellular arm of the immune system results in the
elimination of foreign substances.

Typically, an organism entering the body activates monocytes and macrophages to
secrete lymphokine, interleukin-1, which induces the proliferation of T-cells and the
production of interieukin-2. Interleukin-2 activates T-cells that then proliferate and further
differentiate into helper (T-4) and suppressor (T-8) cells that will then modulate B-cells and
activate killer T-cells. What follows is a cascade of complex cellular and humoral
interactions involving delicate feedback loop mechanisms that eventually results in an
appropriate immune response. The slightest imbalance in this system can result in clinically
apparent immune dysfunction and disease.

There are several mechanisms of immune mediated response and damage. Allergic reac-
tions and anaphylaxis are mediated by the production of cell-bound immunoglobulins,
specifically IGE, causing inflammatory, flare-and-wheal reaction known as Type |
response.

Cytotoxic reaction or Type II immune responses, are mediated by phagocytic cells that
produce cell lysis and injury through tissue-specific antibody production and mechanisms
involving the complement systems. Transfusion reactions, Goodpasture’s syndrome and
juvenile-onset diabetes are all examples of Type II, cytotoxic reactions.

Type Il] immune responses involve immune complex formation between antigen and
antibody, accumulate in tissues, such as blood vessel walls and renal glomeruli, and are
casual in the development of systemic lupus erythematosus, necrotizing vasculiditis, and
serum sickness.

Classical delayed hypersensitivity reactions are characteristic of Type IV immune
responses involving the T-cells, their soluble products and the macrophage system. Typical
clinical disorders include tuberculosis and other granulomatous diseases, such as Wegener’s
disease and sarcoidosis. In addition, delayed type hypersensitivity plays a major role in the
development of fungal infections (e.g., histoplasmosis) chlamydial infections (e.g.,
lymphogranuloma venereum), and Helminth infections (e.g., schistosomiasis).

 

 
 

 

3-4 American Psychiatric Association AIDS Primer

 

VIROLOGY

Viruses are the smallest known infectious agents. Typically they contain a molecule of
nucleic acid encased in a protein shell and the entire infectious unit is termed a virion.
Various properties of virions form the basis of classifying viruses (see Charts I-III).

CHART I: CLASSIFICATION OF VIRUSES
!) Nucleic acid type: RNA or DNA
2) Size and morphology of the virion
3) Susceptibility to physical and chemical agents
4) Immunologic properties of the virion
5) Natural methods of transmission
6) Host, tissue and cell tropism
7) Pathogenesis of the virion
8) Clinical symptomatology the virion produces

CHART II: DNA-CONTAINING VIRUSES
Poxvirus
Herpes virus group
Adenovirus
Papovavirus
Parvovirus

CHART III: RNA-CONTAINING VIRUSES
Arbovirus
Orthomyxovirus
Paramyxovirus
Rhabdovirus
Coronavirus
Arenavirus
Togavirus
Diplornavirus
Picornavirus
Oncornavirus

All virions replicate only in living cells. The viral nucleic acid programs infected host cells to

synthesize specific proteins and to assemble new virions that may be released intact from the

cell. In most cases virions accumulate within the infected cell and are released when the cell
o, ¢” ey fe eA: ;

lyses. °

 

 
 

 

American Psychiatric Association AIDS Primer 3-5

 

The signs and symptoms of viral disease result from a series of interactions between the
virus and its host. Viruses are heterogeneous and thus capable of producing either active,
latent, or persistent infection. Incubation periods vary from a few days (influenza) to
several weeks (measles), to months (hepatitis), or several years (lente or slow viruses). Viral
diseases can also result from endogenous reactivation of a virus as occurs with shingles,
herpes simplex and CMV.

Transmission of viral diseases can occur either horizontally (between members of
susceptible host population) or vertically (e.g., from mother to fetus). Cofactors such as the
age, genetic background, nutrition, level of activity, and the antibody response of the host
influence transmission. Once infected, viremic spread can occur through hematogenous.
neural, and lymphatic routes. Various degrees of immunopathology related to direct or
indirect effects of the virus ensue.

Human Immunodeficiency Virus

HIV is a pathogenic retrovirus believed to be the etiological agent of AIDS and related
disorders (6-15). As a retrovirus its genetic material is ribonucleic acid (RNA). This virus is
polymorphic with distinct patterns of viral isolates in different patients. HIV propagates
most easily in lymphocyte tissues where it has confounding cytopathic effects: cell lysis and
fusion. Unlike other viruses in its class, this virus kills the cells that it harbors, thus making
it lethal.

Because HIV has a lipid envelope over its RNA-containing core, it may be easily
inactivated by standard disinfectant measures (16). HIV cannot be transmitted by casual
environmental or interpersonal contact. For transmission to occur there must be sexual
interactions or direct introduction of the virus into the bloodstream (17-25). HIV has been
tentatively classified as one of the non-oncogenic Lentivirinae retroviruses, due to its
resemblance to the visna virus.

HIV can specifically attach the T-cell lymphocytes in humans for up to 10 years after
initial exposure to the virus (26). This obviously destroys a person’s immune system and
damages his or her ability to fight other disease, as the T-cell is the critical and pivotal point
of the immune systems cascade that enables one to fight off foreign antigens.

Without a functioning immune system, individuals who are infected with HIV become
vulnerable to infections and malignancies that cause life-threatening illnesses, such as
opportunistic infections and cancer. Additionally, this virus may independently infect
central nervous system cells (27-30) causing the degenerative and devastating complication
known as AIDS Dementia Complex (31-32).

Immunology of AIDS (10,33-35)
HIV infection results in a progressive destruction of the helper cell population by
infecting the host’s T-4 helper-inducer cells. Severe immunodeficiency ensues, facilitating

 

 
 

3-6 American Psychiatric Association AIDS Primer

 

the development of opportunistic infections, Kaposi’s sarcoma and other malignancies.
Although much is known about the nature of the virus and its pathogenicity, little is known
of the nonspecific and HIV-specific immune response of the host.

Since HIV was identified as the etiologic agent of AIDS, there has been a concerted effort
to study immunity to the virus by analyzing the production of antibodies in patients with
AIDS and AIDS-Related Complex (ARC) and in seropositive individuals. Although nearly
all individuals exposed to HIV develop antibodies indicative of infection, some appear to
become carriers for the infection while others develop AIDS or other related disorders.

In the United States alone, there are more than 50,000 cases of full-blown AIDS. There
are 10-15 cases of ARC for every case of AIDS (36). Persistent generalized
lymphadenopathy (PGL), as the major manifestation of ARC, is also well defined (37). The
number of cases continues to grow at an alarming rate as AIDS spreads throughout the
United States, Western Europe, Australia and Africa.

Some of the prognostic variables for the progression of PGL to AIDS, ARC to AIDS, or
AIDS to death have recently been reported (38). These are generally based on very severe
immune disturbance, such as a helper-suppressor ratio below 0.1, an absolute T-4 count of
less than 100 cells per cubic millimeter and skin test anergy.

The virus itself has been cultured and purified (9), its protein has been characterized (39),
susceptible cell lines have been established (40) and the genes encoding the envelope and
core proteins have been cloned (41).

These developments have allowed culture of the virus from the peripheral blood (42),
lymph nodes (40), saliva (43), semen (44), cerebral spinal fluid (27-28), and brain tissue
itself (27-30). They have also led to the development and detection of the circulating
antibody by immunofluorescence, radioimmunoassay and ELISA (20, 45-46). These
developments spawned the beginning of sophisticated virological and immunological
investigations into the etiology, epidemiology and pathogenesis of AIDS and related
disorders.

These findings have also lent impetus to the search for antiviral drugs and
immunologically active drugs. Treatment of immunodeficiency in HIV-related disorders
has been disappointing. Limited clinical experiences have been reported for the interferons
(47-48), interleukin-2 (49), isoprinosine (50), copovithane (51), various thymic hormones
(52-53), Suramin (54), Ribavirin (55-56), diethyldithiocarbamate (57) and most recently
azidothymidine (AZT) (58). Ultimately it may be necessary to use a combined modality
approach that includes 1) antiretroviral therapy, 2) therapy directed at eliminating cofactors
such as CMV infection and 3) immunorestorative therapy. The patients most likely to
benefit from therapy are those with early ARC or those with asymptomatic HIV infection.

A virus vaccine may be more difficult to develop because of the heterogeneity of HIV.
ey ent , wf

 

 
 

 

 

EPIDEMIOLOGY AND OTHER MEDICAL
ASPECTS OF AIDS

Francisco Fernandez, M.D.

AIDS was first recognized in 1981 following several reports of multiple cases of
opportunistic infections and Kaposi’s sarcoma occurring in young, previously healthy,
homosexual men from San Francisco and New York City. All of these patients had similar
patterns of an underlying immunosuppression, specifically an impairment in the
cell-mediated component of the immune system. This led to the CDC definition of AIDS as
a disease predictive of an underlying cellular immune deficiency occurring in a person with
no known underlying cause of immune deficiency or other cause of reduced resistance
associated with that disease. Several opportunistic infections and neoplasms are considered
specific enough to be indicative of AIDS. The CDC definition was revised in 1985 to
include other, more severe clinical manifestations of HIV infection, including: disseminated
histoplasmosis, isosporiasis causing chronic diarrhea of greater than a month duration, and
bronchial and pulmonary candidiasis.

These manifestations have been reordered into groups in a recently published
classification for HIV infections. Group 1 includes an acute infection with HIV that is
associated with transient symptoms and seroconversion. Group 2 includes asymptomatic
infection. Group 3 includes persistent generalized lymphadenopathy (PGL). Group 4
includes all other manifestations including: a) chronic constitutional disease, b) neurologic
disease, c) specified secondary infections, d) specified secondary cancers, and e) other
conditions. Nevertheless, physicians must continue to rely on the original nomenclature of
AIDS, ARC and PGL.

The number of AIDS cases reported to the CDC has been steadily increasing. The
number of cases tends to double every six to eight months and statistical analysis of the
current trends indicates that the number of cases will continue to increase substantially
through 1991. Of the current one and one-half million people in the United States who are
HIV infected, it is predicted that 20% to 30% of AIDS cases are from New York, with the
majority residing in New York City. California reports nearly 25% of the cases, primarily

American Psychiatric Association AIDS Primer 4-1

 

 
 

 

4-2 American Psychiatric Association AIDS Primer

 

from San Francisco and Los Angeles. Other states with an AIDS epidemic include Florida,
New Jersey, and Texas.

The greatest proportion of AIDS cases continues to occur in sexually active gay and
bisexual men, IV drug abusers, hemophiliacs and transfusion recipients. However, the
disease has now broken out of the originally defined high-risk groups and is rapidly
invading the heterosexual community through persons who participate in sexual activity
with anyone who is infected. High risk behaviors for HIV transmission include: 1) sexual
contact (anal or oro-genital) between males; 2) sexual contact (vaginal, anal, or oro-genital)
between females and any male who has been or become bisexual since 1977; 3) sexual
contact (vaginal, anal, or oro-genital) between males and female prostitutes, particularly if
she is a drug abuser; 4) sharing of needles or syringes by past or present IV drug users; 5)
sexual contact with anyone who injects drugs; 6) transfusion of infected blood or its
components, although this is now less of a risk because of the careful screening procedures,
it is, nevertheless, a risk; and 7) childbirth by a mother who is infected with the AIDS virus.

Seventy-three percent of the cases reported remain in the homosexual or bisexual
population. Past or present abusers of intravenous drugs compose nearly 20% of the total.
About half of the women with AIDS are IV drug abusers. 1% of the patients are
hemophiliacs and 2% are heterosexual partners of one of the persons in one of the first
three groups. More than half of the patients with AIDS are reported to have died. Mortality
varies by both disease group and by time from diagnosis of AIDS. 58% of patients with
AIDS are reported with pneumoncystis carinii pneumonia, 18% with Kaposi’s sarcoma
alone appear to have a lower mortality rate than those in other disease groups. In general,
mortality increases as time from diagnosis with AIDS increases. As yet, no patient with a
diagnosis of AIDS has been reported to have recovery of immune function. The age
distribution of AIDS patients remains relatively constant with 90% of the cases occurring in
persons 20 to 49, The ethnic distribution of AIDS patients is 25% black, and 14% hispanic.

Several predisposing factors for HIV infections and AIDS relate to transmission of the
virus by both homosexual and heterosexual contact, shared needle use in the case of drug
users, blood or clotting factor administration, and maternal/fetal transmission in utero or
in the peripartum period. A search for those cofactors for HIV infection involved in the
development of AIDS has been a major area of investigation. Correlation of sexual
practices and immunologic parameters has yielded potentially important information with
regard to prevention. It is clear from immunologic and epidemiologic surveys that
homosexual men practicing anal receptive (passive) intercourse have a lower
helper/suppressor rate than men who practice no anal intercourse. When cofactors such as
concurrent CMV infection are studied, the titers of CMV antibodies are higher in men
practicing anal receptive intercourse, Given that anal receptive intercourse is considered to

 
 

 

American Psychiatric Association AIDS Primer 4-3

 

be the most common route for acquisition of CMV infections among homosexual! men, the
same possibility exists that this practice also predisposes an individual to HIV infection.

Another cofactor in the development of AIDS among homosexual men is associated with
the total number of sexual partners. Presumably, an increased risk would result from
greater probability of exposure to HIV. It is also possible that individuals with multiple
sexual partners have repeated infections which produce further immune-incompetencies
conducive to transmission and proliferation of HIV in a susceptible host.

Other viral infections common in homosexual men are also suspected as being cofactors
to progression and development of AIDS. These include Epstein-Barr virus, and hepatitis
B. These agents are known to produce immunologic alterations and have been associated
with other malignancies. The exact role of these agents in association with AIDS is not
known. It has been hypothesized that rectal exposure to the alloantigens present on
spermatozoa and seminal lymphocytes may lead to immune suppression, thus increasing
susceptibility to HIV infection. At present these mechanisms remain, at best, hypothetical
explanations as to the progression of HIV infection into AIDS.

Nutritional and other environmental cofactors are also thought to contribute to the
development of AIDS subsequent to HIV infection. Given that there is no specific
treatment for HIV infection itself, the prevention of the development of AIDS currently
rests on interventions aimed at these cofactors.

Infectious Complications Of AIDS

Following the initial reports’ of pneumocystis infections and Kaposi’s sarcoma in
previously healthy homosexual men, nearly two dozen infections have been associated with
this deadly disease. All physicians working with HIV-infected patients must be cognizant of
the infectious complications that occur in these patients. The opportunistic pathogena
encountered are described below. It is important to remember that a patient who has AIDS
is likely to experience one or more of these infectious complications. Multiple irifections are
known to occur either simultaneously or sequentially and continued deterioration in any
patient with the diagnosis of AIDS should lead one to rule out other concurrent infectious
complications.

Pneumocystis cariniipneumonia (PCP) is a protozoan parasitic infection which occurs
almost exclusively in immunosuppressed patients such as those with neoplasia or congenital
immunodeficiency syndromes, recipients of organ transplants and individuals treated with
immunosuppressants (i.e. steroids, antineoplastic agents, etc.). Although presentations of
pneumocystis infection vary from patient to patient, infection with this agent is
characterized by fever, cough, shortness of breath, and weight loss. On radiological
examination, most patients will have the typical pattern of a diffuse granular infiltrate that
often begins in the hilar area and progresses in a symmetrical butterfly distribution to

 

 
 

4-4 American Psychiatric Association AIDS Primer

 

involve the periphery. Nevertheless, some patients with normal chest films require Gallium
scans to reveal the characteristic diffuse lung uptake associated with this deadly infection.

The diagnosis of a PCP in an AIDS patient should be confirmed either by pulmonary
secretions, washings from bronchoscopy of the secretions, or lung tissue obtained from
biopsy. For the most part, examination of expectorated excretions is largely unreliable.
Transbronchial biopsy and, in some cases an open lung biopsy, are the definite means to
establish the presence of pneumocystis in the lungs. If at all possible, however, it may be
desirable to avoid such an invasive procedure as an open lung biopsy in AIDS patients who
typically are thrombocytopenic and who may have concomitant coagulopathies. Following
a documented infection with pneumocystis, the recurrence rate ranges between 20% and
50% for those not treated prophylactically.

Therapeutic strategies include the use of pentamidine, trimethoprin-sulfamethoxazole
(Bactrim), diamino-diphenylsulfone (Dapsone) and alpha-difluromethylornithine (DFMO).
Given the occurrence rate of PCP in AIDS patients, prophylactic treatment of the infection
is now widely recommended. The majority of patients are placed on prophylactic
trimethoprin-sulfamethoxazole. However, many patients are unable to tolerate this
medication either because of toxic or hypersensitivity reactions. Alternatively, a
combination of pyrimethamine and sulfadiazine, or treatment with Dapsone has been
shown to be effective in prophylaxis against PCP.

Following infections with pneumocystis, systematic infections due to Toxoplasma gondii
are probably the second most common in patients with AIDS. The major clinical features
of toxoplasmosis in HIV patients are neurological, with the development of focal findings
secondary to mass lesions which can be identified with either computed tomography (CT)
of the brain or a magnetic resonance imaging (MRI) scan. Although elevated titers of
toxoplasma is believed to indicate acute infection, many patients with AIDS do not have a
strong antibody response to toxoplasma antigens. Therefore, a negative or a low antibody
level does not exclude the diagnosis. Likewise, the diagnosis is not excluded by a negative
CT scan of the brain. Many patients who do not have a mass lesion often clinically
demonstrate an encephalopathy. In these cases, empirical treatment for toxoplasmosis with
pyrimethamine and sulfadiazine should be initiated. Other agents that are available for the
treatment of toxoplasmosis on an experimental basis include clindamycin and spiramycin.
Although these agents seem to be effective when used in high dosages, they do not cross the
blood/brain barrier and, as such, may not effectively treat the CNS infection.

Fungal infections occurring in patients with AIDS are usually due to either Candida
organisms or Cryptococcus neoformans. Candidiasis can either be localized or systemic.
Classic thrush is common and in many cases precedes development of AIDS. Likewise,
Candida esophagitis is quite, common. In patients with evidence of esophagitis it is
imperative to differentiate between infections secondary to localized Herpes or CMV and

 
 

American Psychiatric Association AIDS Primer 4-5

 

Candida as the treatment strategies are distinctly different. Upper endoscopy with biopsy is
required to establish a firm diagnosis for Candida.

Oral thrush responds either to topically applied nystatin, local clotrimazole troches or
ketoconazole orally. In Candida esophagitis treatment with ketoconazole should be
initiated, and if there is no clinical improvement in a week, immediate crossover to
amphotericin-B is warranted. Treatment for systemic Candidiasis also calls for the
administration of amphotericin-B to suppress the infection.

Unlike Candidiasis, cryptococcal infection in AIDS patients is usually a systemic process.
Although the most common manifestation is meningitis, asepticemia and pneumonia are
not at all unusual. Any AIDS patients presenting with headache and an.altered mental
status should immediately have a lumbar puncture to rule out this malignant process. The
diagnosis is defined by identifying the fungus in an India ink preparation of the sediments
found in the spinal fluids. However, when the India ink preparation is negative, it is useful
to obtain a cryptococcal antigen in the cerebrospinal fluid. Additionally, blood, sputum,
and urine cultures should be obtained. The treatment of cryptococcal infections in AIDS
patients rests on the use of amphotericin-B with serial CSF antigen tests to check on the
efficacy of treatment.

Atypical mycobacterial infections are also common in patients with AIDS. By far the
most frequent species includes mycobacterium avium intracellulare (MAI). This organism is
often difficult to culture, and diagnosis generally rests either on biopsy or postmortem
examination. Although the prognosis is extremely poor with this opportunistic infection,
Rifampin, Ethambutol and Amikacin as well as other antimicrobacterial agents have been
used with some success. However, all are extremely toxic in AIDS patients.

Other infections include amebiasis and giardiasis. These infections do not, however,
establish the diagnosis of AIDS. Fiosospora and Criptosporidia, however, do fulfill the
diagnostic criteria for AIDS. Both organisms produce copious amounts of cholera-like
diarrhea. Unfortunately, no effective antibiotic or chemotherapeutic agent is available.
Treatment rests on supportive measures such as fluid and electrolyte replacement.

Disseminated coccidiodomycois and histoplasmosis have been described in a very small
number of individuals. Usually the diagnosis is made in a person who has failed to respond
to adequate therapy for Pneuomocystis infection. The therapy of choice for these fungal
infections is limited to the use of amphotericin-B.

The most common viral infections in AIDS patients include cytomegalovirus (CMV),
herpes simplex, hepatitis B, and varicella zoster. CMV infection is extraordinarily common
in male homosexuals, with greater than 95% of individuals being seropositive. Varying
degrees of diseases such as retinitis, pneumonia, a mononucleosis-like illness, meningitis,
and a variety of constitutional manifestations can occur. Currently the most effective

 

 
 

4-6 American Psychiatric Association AIDS Primer

 

treatment for CMV infection is an experimental agent: dihydroxypropoxymethylguanine or
DHPG.

Herpetic involvement of the GI tract is quite common in AIDS patients as are severe,
necrotizing perirectal herpetic lesions. Although both fortunately respond to parenteral
acyclovir therapy, recurrences are the rule.

Kaposi’s Sarcoma And Other Malignancies Associated With AIDS

Kaposi’s Sarcoma (KS) was one of the originally recognized sequelae of AIDS. Although
more than half of the patients with AIDS are reported with PCP, only 18% appear with
KS, and an additional 6% with both PCP and KS. Homosexual or bisexual men are more
likely to have KS than other groups of AIDS patients. PCP is more common in
heterosexuals, IV drug users, and hemophiliacs with AIDS.

The presentation of KS in AIDS patients involves mucocutaneous lesions with or without
lymphatic involvement. Lesions can occur anywhere in the body, with the face and the oral
cavity being common sites. Early lesions are reddish purple and do not blanch on pressure.
Although these lesions are usually small, with advanced or rapidly progressing disease,
coalesence of these lesions is common and leads to pain, devastating cosmetic effects,
profound edema and respiratory failure. Visceral involvement is also common as is
gastrointestinal involvement. Pulmonary involvement with KS is often a clinically silent but
nonetheless aggressive problem.

Although the natural history of KS is variable, most patients have an indolent course.
Several factors have been associated with a shorter survival, and these include prior
opportunistic infections, weight loss, elevated ESR, low helper-suppressor ratios, and
gastrointestinal involvement. The diagnosis of KS requires histologic confirmation with a
biopsy. Usually a punch biopsy of the accessible skin or enlarged lymph nodes is sufficient
and convenient.

Various antineoplastic agents are extremely effective in the treatment of KS.
Nevertheless, cytotoxic chemotherapy remains controversial since theoretically it may
further impair cellularimmune function. The usual approach to chemotherapy includes the
vinca alkaloids (vincristine and vinblastine) either in association with etoposide (VP-16),
adriamycin or bleomycin. Radiotherapy is often useful as adjuvant therapy for palliation
when there is extensive involvement of the face or lower extremities. In addition it is
extremely useful as adjuvant treatment for painful lesions.

Immune stimulators, such as the interferons and interleukin-2, have been used in efforts
to modulate and restore immune function. They have been used in KS singly as well as in
combination with the vinca alkaloids with moderate success. Antiviral agents including
Suramin, ribavirin and AZT have all been used on an experimental basis. The results are

 
 

 

American Psychiatric Association AIDS Primer 4-7

 

still incomplete, with the exception of Suramin, which has been found to be too toxic and
ineffective.

Several other malignancies have been associated with AIDS including non-Hodgkin’s
lymphomas, Burkitt’s lymphoma, Hodgkin’s disease, chronic lymphocytic leukemia,
squamous carcinoma of the lung, hepatocellular carcinoma and carcinoma of the oral
pharynx. Although in 1987 the incidence of these malignancies was low, some reports
indicate a significant increase over the last three years.

 

 
 

 

PSYCHIATRIC COMPLICATIONS IN
HIV-RELATED ILLNESSES

Francisco Fernandez, M.D.

While the primary manifestations of HIV infection are predominantly systemic, the
psychosocial and neuropsychiatric dilemmas that often present along with the infection are
increasingly and alarmingly prevalent (64-65). Although HIV’s effects on the body’s
immune system are now well recognized, it is becoming increasingly noteworthy that HIV
also affects brain tissue directly (27-30).

Due to the fact that infection with HIV is increasingly prevalent and that infection leads
to such a wide spectrum of disorders with varying courses, all health professionals must
have a working knowledge of HIV-related disease in order to ensure comprehensive
assessment and optimum’ treatment for each individual. This will require a shift in the
theoretical framework from a psychodynamic approach to a neurodynamic one.

Simply stated, in any case where HIV infection may be possible, any symptoms of a
psychiatric nature must be considered to be organic until proven otherwise, so that prompt
medical intervention, for example in the case of cryptococcal meningitis or toxoplasmosis,
may be initiated.

There is no other life-threatening disorder in which psychological complications are as
prevalent as they are in HIV disease. Many patients with HIV infection experience some
symptoms of stress or distress.

Although the natural history and development of the psychiatric complications
associated with HIV disease have not been systematically studied, it has been found that
neuropsychiatric disturbances of the A, B, C’s (Affect, Behavior, and Cognition) in HIV
patients arise from one of the following four sources:

1. The direct effect of the medical illness (or its treatment) on the central nervous system
(such as the AIDS Dementia Complex, or neurotoxic effects of antivirals,
jmmunorestorative therapies and antibiotics).

American Psychiatric Association AIDS Primer 5-]

 

 
 

5-2 American Psychiatric Association AIDS Primer

 

2. The subjective effect of the medical illness on the person’s mind such as when a person
believes that he or she is certain to die of AIDS because of HIV seropositivity.

3. The ‘‘mind’’ itself, as in a conversion of factitious symptoms.
The interaction between the sick person, and his or her caregivers, environment, family,
or others.

Whenever patients with HIV infection present with an abnormal mental or emotional
state, the multiple medical causes of disordered brain function must be methodically and
systematically reviewed for evidence of either a primary or secondary central nervous
system disturbance. This is best done in conjunction with a psychiatrist or neuropsychiatrist
who is familiar with the spectrum of disorders commonly found in HIV disease.

There is little doubt that few disorders exist in which incorrect diagnosis of a functional
illness is as hazardous to the patient as with HIV disease. Functional diagnoses are generally
made by exclusion and often rest on ignorance rather than on specific knowledge about the
medical aspects of brain-behavior relationships involved with HIV disease. Therefore, it is
vital that any professional dealing with this subgroup of patients, prior to making a
working diagnosis, be aware of the multiple psychological complications that can arise
from HIV infection and, furthermore, know how to distinguish them from symptoms of
neuropsychiatric disturbance.

Prior to discussing specific psychiatric problems that are common to HIV disease, a
review of those illness-induced disturbances that occur in all medically ill patients and are
particularly applicable to HIV disease will be presented.

Both fear and anxiety are inherent in the development of the psychiatric complications
associated with HIV infection that sometimes appear in asymptomatic seropositive
patients. This is understandable since the ultimate potential consequence of HIV disease is
death (64). Even when the idea of death itself is not prominent, death’s heralds are
constantly evident, with many patients experiencing severe fatigue, voluminous diarrhea,
high fevers, confusion, and uncertainty about the vague and ominous unknowns that are
forever present with this malignant disease.

Patients may fear being disfigured by the illness (as with Kaposi’s sarcoma) or by its
treatment (as with chemotherapy or radiotherapy). It is important to recognize that fear
and anxiety can assume many guises such as increased verbosity, anger, rage, paranoia and
social withdrawal. These are all behaviors common in HIV-related disease and can be
viewed as manifestations of either fear or anxiety or both. In many cases all of these
symptoms will respond to supportive and standard psychotherapeutic interventions,
reassurance, and education (66).

When coping remains impaired, despite optimal supportive measures, the use of
medications may be necessary. Mgst physicians would agree that it is also necessary when

 
 

 

American Psychiatric Association AIDS Primer 5-3

 

persistent anxiety results in severe and disabling symptomatology. (See Section on
Management)

Denial is a common occurence in HIV disease (64,67). It typically appears after the
confirmation of an HIV-related disorder. As in other medical conditions, denial is an
essential defense mechanism for survival. It enables patients to minimize or exclude the
threatening implications of their disease in order to avoid panic. For some patients, denial
serves as an expression of their independence as they bitterly revolt against any diagnosis or
restrictions that the disease or its treatments impose on them. However, there is a subgroup
of deniers who are bent on behaviors (68) that are self-destructive and may, in addition,
bring harm to other individuals (e.g., an ARC patient who has unprotected sexual activity
with multiple partners). These individuals appear to reject any therapeutic intervention.
When confronting an individual with this type of behavior pattern it is of utmost
importance to rule out either an organic mental disorder or a treatable depression (69). Both
can have a confounding effect on irresponsible behavior and require the psychiatrist to
work closely with the allied medical staff.

Despondency and demoralization are commonly encountered in HIV-infected
individuals and can at times lead to irreparable psychic damage. The injury to the mind may
severely affect self-esteem to such a degree that work and personal relationships are severely
jeopardized. Disappointment with both what has and what has not been accomplished in
life can haunt the individual, making suicide a real risk.

The social stigma associated with alternative lifestyle HIV itself further compound this
problem. Concerns of this kind become conscious early in HIV disease and effective
management is imperative.

Education, clarification, and exploration of what the patients know or think they know
about the disease are helpful to treatment (70). Misconceptions should be corrected early
and reassurance can have very soothing and significant effects on these illness-induced
despondencies.

Of course, personal investment manifested by sensitivity and understanding towards
HIV-infected individuals may be far more therapeutic than any other intervention.

Individuals with AIDS or other forms of HIV infection experience other psychological
symptoms that may include a sense of isolation, anger, a sense of betrayal, and fears of
death and dying. Persons with HIV disease experience what has been described as an
adjustment reaction which is typically experienced in four stages (71-72):

1. Initial crisis, which is characterized by shock, denial, guilt, fear, anger, sadness,
bargaining and feeling like an outcast.

2. Transitional stage, which begins when denial is superceded by alternating waves of
anger, guilt, self-pity and anxiety. This is often followed by changes in self-esteem,
identity and personal values. Estrangement from family of origin, friends and

 

 
 

 

5-4 American Psychiatric Association AIDS Primer

 

community at large is also typical of this stage. Many times, unsafe sex and drug use can
reappear and continue.

3. Acceptance stage, in which a new stable identity is formed that allows patients to accept
the limitations imposed by HIV or AIDS and make conscious efforts to live each day as
it comes.

4. Preparatory stage for death, which is accompanied by fear of total dependency on
others. Although patients experience fleeting suicidal ideation throughout all stages,
many consider suicide at this time. Most, however, continue to fight for life even as they
fear death.

It is important to note that it is more accurate and therapeutically more practical to
regard these stages as reactions that may be present simultaneously or may occur in any
order rather than as fixed stages that follow in sequence.

Individuals with HIV-related disease often experience psychological problems and
psychiatric syndromes more intensely because of their special circumstances (73). Many
patients experience a sense of helplessness, hopelessness, low self-esteem, depression and
anxiety levels that are more intense than might otherwise be anticipated.

Isolation can commonly occur, particularly as the financial resources of the individual
dwindle (74). Often patients must rely on social services for help, which furthers their guilt
and sense of worthlessness. In some cases, their guilt may overcome them when their lovers
or significant others become ill. At this point excessive blaming can become overwhelming
and severely debilitating; suicide becomes a serious risk.

The psychological problems experienced: by HIV-infected individuals are further
intensified because of our societal experience and the social stressors placed on individuals
with alternative lifestyles (74). These stressors may intensify the stigma of being associated
with imprudent conduct, particularly in women (75) and other minorities infected with
HIV. This may lead to further deterioration of the social support systems available in these
groups. Their access to health care resources may be further fragmented and limited by the
fear of revealing themselves in a socially unacceptable way.

It is important to remember that psychiatric complications in HIV infection are
increasingly prevalent. Many patients show some evidence of mood disturbance, with
two-thirds of hospitalized AIDS patients showing signs and symptoms of organic mental
disorders (64,76).

In spite of the high incidence of psychiatric disorders, investigators have noted that
psychiatric consultations for the emotional and behavioral disturbances accompanying HIV
disorders are vastly underutilized (77).

Of all the psychiatric diagnoses, adjustment disorder with depressed or anxious mood is
most commonly made in patients with HIV infection (78). Recurrent themes reported by
these patients include‘difficulty dealing with a life-threatening illness, uncertainty about the

 

 

 
 

American Psychiatric Association AIDS Primer 5-5

 

implications of their diagnosis, social withdrawal as well as isolation and guilt over previous
life styles.

Adjustment disorder is far more prevalent in ARC than in AIDS patients. The reasons
for this are unclear, but believed to be related to the uncertainty associated with the lack of
a specific diagnosis.

Affective disorders are also commonly diagnosed in AIDS patients, although much less
frequently than adjustment disorders (78). As many as 17% of AIDS patients meet
DSM-III diagnostic criteria for major depressive episode. Given that behavioral and
emotional changes in patients who are infected with HIV often reflect a wide range of
neuropathologic disorders (79), the diagnosis of major depression in HIV patients should
be suspect if it is unaccompanied by a rigorous neurobehavioral examination. When
encountering HIV patients who have signs and symptoms of depression, physicians should
be aware that depression may coexist with an organic mental disorder. With HIV patients,
as with any other medically ill patient, one should avoid thinking of depression as being
common either as a consequence of the disability occurring from the disease or from
changes in the patient’s lifestyle that lower self-esteem (80). A treatable mood or cognitive
disorder should not be overlooked because of the assumption that the patient’s symptoms
represent an understandable psychological reaction to a malignant disease such as HIV
infection. A neuropsychiatric assessment to screen for a reversible organic mental disorder
is mandatory given the high incidence of cognitive impairment with HIV infection.

After organic causes for the patient’s behavior have been ruled out, the diagnosis of
major depression (81) should be considered. Obviously, making the diagnosis of depression
in any seriously ill patient with HIV infection is not without difficulties. For instance, it
would be uncommon to find an HIV patient not suffering from one or more of the somatic
symptoms that overlap with depression. Consequently, some clinicans advocate relying on
indicators of cognitive and psychological symptoms of depression as opposed to the
somatic and vegetative signs of depression (82-84). There is no evidence, however, other
than hypothetical, to suggest that somatic symptoms should be disregarded, particularly
since studies indicate that depression in the medically ill is underdiagnosed and undertreated
(85). In fact, a recent study of cancer patients suggested that a combination of both somatic
and nonsomatic symptoms appears more freqently among cancer patients than among
controls (86).

Given that depression can have such disabling effects in any medically ill patient, we
advocate an inclusive approach in diagnosing depression in HIV patients (87). In this
approach a symptom for depression is counted toward the diagnosis of depressive disorders
whether it is related to the underlying illness or not. Knowledge of the medical
complications of HIV disease is nevertheless required for evaluating complaints of
depression in this population where the differential diagnostic challenge is so great.

 

 
 

 

5-6 American Psychiatric Association AIDS Primer

 

NEUROPSYCHIATRIC SYNDROMES

Evidence is rapidly accumulating that the most common central nervous system
complication of HIV infection is independent of the opportunistic infection or neoplasia
associated with the immune deficiency.

Typically, patients present with varying psychologic signs and symptoms that can
masquerade as a functional disorder, but actually are signals of an organic mental
syndrome.

Since 1984 several published reports have documented cases of AIDS patients who
presented with predominantly psychiatric symptoms including mood swings, depression,
delusions and other thought disturbances, personality changes, and amnestic syndromes.
These psychiatric disturbances typically are associated with varying degrees of cognitive
impairment and coalesce into the subacute encephalitis/dementia syndrome now known as
AIDS Dementia Complex (31). Most patients with HIV infection who suffer neurological
complications have varying degrees of this complex disorder, which is now believed to be
the primary complication of central nervous system infection with HIV. It is noteworthy
that nearly 25% of patients may experience this disorder as the presenting or sole
manifestation of HIV infection (88). Disturbances of affect, behavior, and cognition,
accompanied by some degree of motor involvement, are the hallmark of this disorder.

Although the criteria for diagnosing organic mental disorders have been standardized in
DSM-III (81), they unfortunately do not specify the steps needed to arrive at the diagnosis.
It is often inadequate to rely on a brief mental status examination to grossly screen for brain
function, even when done in an orderly fashion (89-90). In many cases the traditional tests
of the mental status examination fail to distinguish the more subtle cognitive impairments
that are common in this population. It is important, as mentioned earlier in this chapter, for
psychiatrists to shift from what might be called a psychodynamic to a neurodynamic
approach when dealing with patients infected with HIV where the accurate assessment of
brain-behavior relationships is crucial.

A simple test that has gained much popularity for screening medical and psychiatric
patients for organicity (90) is the Mini-Mental Status Examination (MMSE). This test
consists of 11 categories of questions that are administered over a five 5 to 15 minute period
and requires a total of 30 responses. Reliability and validity are quite high for
differentiating dementia from functional conditions. Its diagnostic accuracy for subtler
cognitive impairments typical of HIV patients may, however, be poor (92). In fact, studies
of the MMSE in cancer patients have recommended that a visual analog scale, to rate the
level of consciousness, and a tachistoscopic assessment, to measure the capacity to attend
and concentrate, be given in combination with the MMSE (93). The clinician may face
problems with this suggestion, howeyer, such as the difficulty of using these instruments at

 

 
 

 

American Psychiatric Association AIDS Primer 5-7

 

!

the bedside of medically ill patients, the time involved in completing such a complicated
evaluation, and the difficulty in teaching the use of the tachistoscope to cognitively
impaired patients.

The experience with the MMSE in HIV disorders is that it is useful only when it is positive
(i.e., score < 15). If it is within the normal range, it does not rule out organic pathology.
Consultations with a neuropsychiatrist may be required for a definitive diagnosis in these
cases.

Screening all HIV patients to rule out organic mental disorders is of utmost importance.
Although the exact incidence of organic mental disorders in HIV-related disease is
unknown, clinical estimates suggest that 50% to 70% of patients will develop an organic
mental disorder sometime during the course of their illness (76).

Of all the organic mental disorders, delirium is the most frequently encountered in
hospitalized HIV patients (81). Its actual incidence in HIV disease, however, is unknown.
Delirium is often misdiagnosed as a depression or as another functional psychiatric
syndrome. The detection of any organic mental disorder, including delirium, is clinically
important because of the potential for reversibility with specific treatments directed at the
underlying etiology.

Researchers believe delirium reflects diffuse cerebral cellular metabolic dysfunctions.
There is often a prodromal phase in which the patients complain of difficulty thinking,
irritability, insomnia, and restlessness. Identifying this prodrome should generate a search
for the cause of the delirium and aid in preventing further neuropsychiatric complications.
Several non-HIV-related causes of delirium are life-threatening and must not be overlooked
as they too can cause permanent brain damage. These include hypoxemia, metabolic
dysfunctions such as electrolyte disturbances, Wernicke’s encephalopathy, hypoglycemia or
hyperglycemia and neurotoxicities from antibiotics, antifungals and chemotherapeutic
agents.

The most common chronic organic mental disorder of HIV disease is dementia
(31,76,78). Dementia generally refers to those insidious groups of disorders that destroy
cerebral function (81).

Diffuse and global deficits of higher cortical functioning are prominent features of
dementia. Unlike delirium, changes in the level of consciousness caused by dementia are
unusual until the terminal phases of the disorder.

It is important in dealing with HIV disorders to distinguish between secondary dementias
that are associated with reversible organic illnesses (such as those resulting from an
opportunistic infection), and primary dementias for which an organic cause cannot be
demonstrated but is inferred (such as the dementia occurring with the AIDS Dementia
Complex).

Evidence is now accumulating that HIV is a neurotropic and neurovirulent agent that can

 

 
 

5-8 American Psychiatric Association AIDS Primer

 

\ \

infect the central nervous system very soon after the first systemic infection with the virus
(2730). Central nervous system HIV infection is the major cause of AIDS Dementia
Complex (31-32). The high frequency and severity of this disorder in HIV-infected
individuals is perhaps the most important challenge to our health care delivery systems in
responding to the AIDS pandemic.

The clinical features of AIDS Dementia Complex vary. Typically, the disorder has a
subtle onset that can easily be mistaken for functional psychiatric syndromes. However, in
some patients symptoms of neurocognitive decline may be more abrupt, and in a subgroup
of these patients, rapid progression of the dementia is the rule. The advancement of the
dementia may or may not correlate with systemic infection, metabolic derangement, or
other biological insults. Nevertheless, HIV patients are independently at risk for the
development of organic mental disorders and, in some cases, systemic insults may
accelerate or exacerbate an underlying subclinical brain syndrome.

The early manifestations of AIDS Dementia Complex may be mild and are thus
frequently misconstrued as either being secondary to the systemic illness or a psychological
reaction to HIV infection.

Frequently, complaints such as forgetfulness, difficulty in attention and concentration,
and loss of interest can be relegated to merely an ‘‘understandable’’ depression secondary
to the disability imposed by the disease.

Pathological slowing of higher cortical functions and information-processing frequently
occurs in association with indifference, apathy and social withdrawal. Many patients will be
cognizant of their own mental and physical sluggishness and complain about their inability
to perform their usual daily tasks at home or at work. Mild to moderate changes in
personality and character typically accompany these other early changes.

Psychotic features, although rare, have been reported as early abnormalities and are
presumed to be complications of HIV disease. Likewise, motor involvement may occur
early and, in a subgroup of patients, may dominate the effects of central nervous system
involvement with HIV. In most cases, however, neurological examination typically is
normal. While traditional tests of mental status may be normal or show diffuse changes
that are difficult to interpret, formal neuropsychological testing can often assist in
elucidating areas of cognitive dysfunction missed by the routine and gross screening
examination of higher cortical functions.

In most patients the course of AIDS Dementia Complex progresses at varying rates. As
the disorder progresses from moderate to severe cognitive deficits, confusion, marked
pathological slowing of all cognitive functions, and hypersomnolence may occur. Patients
at times appear mute and ‘catatonic. Socially inappropriate behavior and a decline of
personal hygiene sometimes appear. Marked motor abnormalities including ataxia;-~
spasticity, hyper-reflexia, positive Babinskis and urinary and fecal incontinence can occur.

 

 
 

 

American Psychiatric Association AIDS Primer 5-9

 

Less commonly, Parkinsonism, myoclonus and seizures have been reported with advanced
HIV disease.

Some of the changes that occur in personality and mood associated with HIV disease can
be transient and may reflect either an Organic Personality Disorder or an Organic Affective
Disorder as described in DSM-III.

Personality changes can occur with any central nervous system disease including
neoplastic disease, opportunistic infection, partial seizure activity, metabolic imbalance,
chemotherapy or antiviral-related neurotoxicities. Destructive lesions of either the frontal
or temporal lobes can often lead to an Organic Personality Disorder. Patients with these
disorders can be either emotionally labile and impulsive or apathetic, pseudodepressed and
indifferent. Additionally, metabolic disturbances that are not of sufficient severity to
produce a delirium can also cause an Organic Personality Disorder.

Clinicians should also be aware that uremia, hypokalemia, hypoxemia and
adrenocortical insufficiency can produce nonspecific changes in personality that can
confound the diagnosis of an organic mental disorder. Chemotherapy can also produce
nonspecific changes in personality including alterations in initiative, energy, irritability and
blunting of affect.

Disturbances of affect are common in HIV patients. Most of these disturbances involve
depression with either mania or hypomania, with depression the more common presenting
symptom. In addition to direct central nervous system infection, depression in HIV disease
patients may be due to direct insults to the brain, as with cerebrovascular accidents (94),
steroids, vinca alkaloids, analgesics, metabolic imbalances, or interferons and antivirals.

Memory disturbance is typical of HIV infection and can be an early complication of HIV
disease (95). Herpes encephalitis, vitamin deficiency and hemorrhages, as well as
opportunistic infections, such as toxoplasmosis, which can cause focal lesions in the
temporal lobe, can also give rise to an amnestic syndrome.

Organic Delusional Disorder and Organic Hallucinosis occur less frequently and may
result from such insults as sepsis, neurotoxic drugs, analgesics, focal seizure activity,
opportunistic infections and central nervous system involvement with HIV.

Because the clinical picture of central nervous system involvement with HIV resembles a
multitude of functional psychiatric disorders and are often indistinguishable from them
without neuropsychological testing, all clinicians have a significant clinical responsibility to
recognize the varying neuropsychiatric disturbances that can occur in HIV-infected
individuals. The assessment of patients with HIV disease for disorders of affect, thought
and cognition is particularly important since their capacity to think, grasp their situation,
work and express themselves is dependent on these functions.

Paralleling this concern with their quality of life are problems of patient management,
since their ability to relate their history, comply with treatment, give informed consent and

 

 
 

 

5-10 American Psychiatric Association AIDS Primer

 

volunteer for research projects and treatments can be grossly impaired by cognitive changes
associated with AIDS Dementia Complex. Adequate care of the neuropsychiatric
disturbances that occur secondary to nervous system involvement with HIV necessitates a
good working relationship with medical colleagues.

Additionally, providing successful treatment of cognitively impaired HIV patients entails
the coordination of both hospital and community resources similar to that needed with
Alzheimer’s disease patients. The main goal is to keep these individuals at their highest level
of adaptive functioning through the use of support groups, visiting nurses, day care
programs, and long-term care programs in nursing homes.

MANAGEMENT OF NEUROPSYCHIATRIC SYNDROMES
AND DEPRESSION IN HIV DISORDERS

Delirium

Delirium in HIV patients is usually treated conservatively (65,76). Typically, delirium in
HIV patients is multifactorial in etiology, and a complete evaluation to rule out all treatable
contributing medical conditions should be the first step.

Psycniatric management of the delirious HIV patient generally focuses on psychological
and environmental support including:

1. Reassurance and explanation to the patient and significant others about the nature of
delirium, its usual course, and expected degree of reversibility.

2. Frequent contact with selected individuals who are familiar to the patient and who
are involved in the patient’s care.

3. Frequent orientation of the patient to date, time, place, situation, etc.
Provision of a soft light and clock in the room at all times, even at night.

5. Discontinuation or minimal use of all medications that may further disturb cerebral
metabolism and function.

6. Assistance in managing sleep cycle disturbances and reversal as well as restoring
other biorhythms.

7. Restraint of the patient as necessary for impulsivity and behavioral changes that
jeopardize medical treatment and safety.

As for pharmacological treatment, the use of a high potency neuroleptic is usually
recommended for treating agitation that is potentially dangerous to the patient. Although
the technique of rapid tranquilization with high doses of both oral and intramuscular
haloperidol have been used safely in other agitated and delirious medically ill patients, it is
not without impunity in H!V patients.“HIV-infected individuals appear to be more sensitive

 

 
 

 

American Psychiatric Association AIDS Primer 5-H]

 

than others to the extrapyramidal reactions associated with the neuroleptics. Thus, the use
of very low doses initially with careful adjustments and monitoring is recommended.

When low-dose neuroleptic therapy is inadequate to control the agitated, delirious HIV
patient, the use of intravenous haloperidol either alone (96) or in combination with
lorazepam and/or hydromorphone is often helpful (98). For some patients the intravenous
route is necessary to achieve rapid control of severe agitation that can often jeopardize their
medical care.

For those practicing critical care psychiatry with HIV patients, the technique of rapid
intravenous tranquilization with haloperidol in combination with either benzodiazepines or
analgesics is perhaps the safest and the most effective treatment for agitated HIV patients.
Swift attenuation of their cognitive, affective, and behavioral dysfunctions is the main
principle guiding this treatment modality. In this subgroup of severely agitated HIV
patients delirium can be seen secondary to etiologies such as metabolic imbalances,
neurotoxic effects of chemotherapy, focal brain lesions, multifocal leukoencephalopathy,
and other more commonly encountered organic factors.

Single boluses of haloperidol up to 10 mg given intravenously and lorazepam up to 10 mg
given intravenously every hour have been used repeatedly in the presence of severe agitation
(97) for as long as two weeks without side effects. Twenty-four hour doses of 480 mg of
haloperidol and 240 mg of lorazepam have also been used without any adverse effect (99).

Attenuation of most symptoms can be achieved within 24 to 36 hours and a tapering
schedule is then initiated. Although some physicians still consider dosages of this magnitude
to be dangerous (100), there is no evidence other than hypothetical to substantiate this
claim. Obviously, the ideal dose of any therapeutic regimen is the smallest dose that
accomplishes the maximal clinical effect; however, high initial doses of intravenous
medications are sometimes indicated in cases where effective control of severely agitated
HIV-infected patients is essential to their well-being.

Depression

The treatment of depression in HIV spectrum disorders is based largely on clinical
experience and intuition. There are as yet no available studies, with the exception of single
case reports, that advocate the use of psychotropic drugs in this population. At present, the
choice of an antidepressant is based largely on physician preference.

Given that all antidepressants have been reported to have an equivalent clinical efficacy
in the treatment of depression, the particular choice in HIV disease should be made on the
basis of the different pharmacological profiles of these agents to limit side effects (101). For
instance, those agents with greater affinity for the muscarinic receptor centrally should be
avoided in treating depressed HIV patients, as these agents’ anticholinergic effects may

 

 
 

 

5-12 American Psychiatric Association AIDS Primer

 

cause undesirable adverse central nervous system effects. They may also cause excessive
drying of the mucous membranes which can contribute to the development of candidiasis.

The choice of a particular antidepressant is also made on the basis of relevant clinical
information (102) including a previous positive treatment response to a specific
antidepressant, a first-degree relative with a positive response to a particular
antidepressant, or a positive psychostimulant challenge test to predict to which
antidepressant the patient is most likely to respond. The patient’s clinical presentation will
also determine whether a calming or a stimulating effect (i.e., a serotonergic versus a
noradrenergic agent) is desirable.

Standard clinical guidelines for antidepressant pharmacotherapy should be followed once
treatment is initiated. The general clinical experience is that HIV patients, like cancer
patients, appear to respond to antidepressants in a shorter period of time and at lower doses
than physically healthy patients who are depressed (103). Treatment, therefore, should start
with low doses, and increases should be made slowly as tolerated. After an adequate
therapeutic effect has been achieved over three to four weeks, the drug should be
maintained for a minimum of six months at therapeutic doses. Should symptoms recur
while tapering the medication, returning to a higher, previously effective dose and
treatment for another three to eight months is indicated.

Monoamine oxidase inhibitors (104) are generally not used as the first line agents in the
treatment of depressed HIV patients who are undergoing antiviral or antineoplastic therapy
because of the potential for a hypertensive crisis or other drug-drug interactions. Never-
theless, this concern should not deter physicians managing a depressed HIV patient in light
of the 15% suicide rate in HIV patients with affective disorders (105).

Likewise, fear of hematopoetic toxicity such as agranulocytosis and neutropenia should
not interfere with appropriate medical treatment for depression. Although this particular
issue has not been systematically studied, many patients who are receiving concomitant
marrow-depleting chemotherapy (such as with AZT) have been treated with antidepressants
without any evidence of added toxicity (107).

The use of psychostimulants such as methylphenidate, dextroamphetamine, and
pemoline in depressed HIV patients is growing. These agents have sometimes been
effective in quickly remitting the major signs and symptoms of depression in other
medically ill populations without serious side effects (108-113). The general
psychostimulant experience with HIV patients (79,113-114) is highlighted by psychomotor
activation, appetite stimulation, and qualitative improvement in higher cortical functions
(such as attention, concentration, memory and information processing) and in affect (115)
within hours.

Clinically the preferred psychostimulant for depressed HIV patients is methylphenidate
(MPD). The half-life of MPD‘is only two to six hours (116), which allows for repeated

 

 
 

American Psychiatric Association AIDS Primer Fe i 5-13

 

administration during the day. A typical schedule would be 5 mg to 20 mg of MPD
administered at 7 a.m., 10 a.m., and 1 p.m. More than 30 mg a day is rarely needed, but
doses of 120 mg may sometimes be required. An equivalent dose of dextroamphetamine is
typically administered twice daily (usually at 7 a.m. and noon) given its longer half-life of
18 hours (117). Note that the equivalent dose of dextroamphetamine is half the MPD dose.
Pemoline’s half-life is usually even longer and a single 8 a.m. dose is sufficient. Treatment
with any of the psychostimulants needs to be individualized given their pharmacokinetic
and pharmacodynamic differences. Some researchers have noted that they can be continued
safely without any evidence for tolerance or abuse for several weeks or months after the
patient becomes asymptomatic (118).

Psychostimulants have also been used in patients with AIDS Dementia Complex,
Organic Personality Disorders, and Organic Affective Disorders with marked improvement
in both the affective and cognitive disturbances without treatment-related side effects (118).
Psychostimulant treatment in these subgroups of organically impaired patients can be
continued as a quality of life measure for patients who are disabled by the cognitive and
mood disturbances associated with central nervous system involvement with HIV.

Anxiety Disorders

As previously mentioned, anxiety is a universal accompaniment to HIV disease. HIV
patients are prone to reactive anxiety throughout their illness, including the initial discovery
of seropositivity, during diagnostic workups for progression of their disease and staging
purposes, and when a new treatment is started.

Patients with a previous history of generalized anxiety disorder, panic disorder,
obsessive-compulsive disorder or an atypical anxiety disorder preceding the diagnosis of
HIV spectrum disorders could experience a severe recurrence or exacerbation of their
symptomatology. If this occurs previous treatments for the disorder, including
psychotropics, should be reinstituted.

Medical screening of anxious HIV patients is necessary as many patients may be suffering
from a secondary opportunistic infection or focal neurological lesion. It is useful to
remember that when anxiety is a prominent symptom, psychiatric evaluation should be an
adjunct to a complete medical workup.

Free-floating anxiety of insufficient severity to warrant a diagnosis of an anxiety disorder
by DSM-III is a common feature of HIV disease. When supportive measures and
reassurance fail to relieve anxiety, benzodiazepines remain the treatment of choice. It
should be noted that all benzodiazepines have equal effectiveness and differ only in their
elimination half-lives and cost (119). However, when fear and anxiety are severe and
encroach on the logical processes and rationality of the patient to the extent that he or she is
on the verge of panic, neuroleptics become the drugs of choice. When panicked individuals
begin to lose control, benziodiazepines may further compromise their coping capacity or

 

 
 

 

5-14 American Psychiatric Association AIDS Primer

 

disinhibit them in such a way that they may continue to lose control and eventually require a
neuroleptic. All benzodiazepines have equal effectiveness and differ only in their
elimination half-lives and cost (119).

Barbiturates, antihistamines, meprobamate, tricyclic antidepressants and neuroleptics
should never be used routinely in HIV patients with anxiety, since their safety and
effectiveness do not compare with that of benzodiazepines. If at all possible, long-acting,
lipophilic benzodiazepines should be avoided. The short- to intermediate-acting
benzodiazepines, that are metabolized more simply, and generally do not have active
metabolites, are ideal for use in HIV patients whose anxiety is limited to particular
situations such as undergoing diagnostic and therapeutic procedures.

Alprazolam has been popular in the treatment of HIV patients with adjustment
disorders, minor depression, mixed features of reactions to stress and distress as well as
simple phobias related to treatment (120). Once the decision to treat a patient suffering
anxiety with a benzodiazepine is made, treatment for a brief period (i.e., two to three
weeks) is recommended. Guidelines for long-term benzodiazepine treatment in this
population are not firmly established but are similar to those for primary psychiatric
disorders (121).

As yet the clinical experience with the azaspirodecanedione, buspirone, is too small to
comment on (122). This agent, with its lack of sedative effects, is of great interest in the
management of anxiety in the medically ill, though there is serious abuse potential because
of its cross tolerance with alcohol or barbiturates.

Pain

Pain is a common symptom across various diagnostic categories in HIV disease.
Effective analgesia is critical for improving quality of life in HIV patients who suffer pain.

Psychiatrists commonly encounter pain problems in HIV patients, but, like other
specialists, they frequently overlook the benefit of psychotropics in pain management.
Adequate analgesia aids the recovery from associated symptoms such as insomnia,
depressed mood, exhaustion and agitation. Narcotic analgesia is the preferred treatment for
unrelieved organic pain associated with either the primary or secondary complications of
HIV disease or its treatment. Therefore, psychiatrists should be familiar with the properties
of the most common narcotic analgesics (123). They should also be familiar with current
descriptive classifications of pain syndromes and definitions, such as that of the
International Association for the Study of Pain, to effectively diagnose and treat patients
with these disorders (124).

When choosing a narcotic analgesic it is always best to begin with a low potency narcotic
and increase potency as necessary. In HIV patients, meperidine should be avoided whenever
possible, since its active metabolite, normeperidine, is notorious for causing a variety of
adverse central nervous system effects including seizures (125): When pain becomes

 

 
 

American Psychiatric Association AIDS Primer 3-15

 

|
refractory to increasing doses of any narcotic analgesic, it has become popular to add

longer-acting agents such as methadone or controlled-release preparations of morphine.
Regimens involving single oral narcotic analgesics are generally less neurotoxic in HIV
patients than are combinations of the short- and long-acting narcotics. The use of
methadone should be avoided if possible because its analgesic effect is of short duration and
does not correlate well with its half-life or plasma concentration (126). Because
methadone’s half-life changes over time, there is generally a greater likelihood of
cumulative toxicity in HIV patients. Likewise, the use of long-acting or controlled-release
narcotics should be avoided, especially in those HIV patients who are cognitively impaired
or those who have multiple organ failure.

When increments in potency of the analgesics fail to control the pain, an attempt should
be made to cross the patient over to hydromorphone. This potent analgesic has few active
metabolites, making it the most effective and potentially the least toxic of its class. It is
comparable to heroin (dihydromorphone) in its solubility, kinetics and potency (127).
Parentera. hydromorphone is five times more potent than parenteral morphine. Doses are
generally scheduled every three hours around the clock. A time-contingent rather than a
pain-contingent schedule is warranted in order to avoid ineffective analgesia. It is important
to remember when converting from parenteral to oral doses of hydromorphone that the
parenteral form is four times more potent than the oral. Doubling or tripling the regular
dose of narcotics at bedtime can obviate the need to wake the patient during the night. Of
all side effects that can occur with narcotic analgesics, constipation remains the most
serious. A bowel management program should be started concomitantly with the initiation
of any narcotic regimen.

Narcotic analgesics should never be combined in the treatment of pain. As a rule,
combinations of these agents yield added toxicity rather than improved analgesia. One
should not combine narcotic agonist-antagonists such as pentazosine, butorphanol, and
nalbuphine with pure agonists, since the former agents will invariably precipitate a
withdrawal reaction (129).

Fear of dependency and abuse should not hinder clinical decision making in the
treatment of terminal pain in HIV disorders, since these fears are unfounded and only serve
tO generate and perpetuate poor clinical management.

The addition of specific psychopharmacologic agents as narcotic adjuvants should be
reserved for those pain syndromes refractory to the optimal use of narcotic analgesics.
Stimulants, neuroleptics, tricyclic antidepressants and anticonvulsants have been used for
many years as analgesic adjuvants in oncology. Their choice should be individualized, with
the goal of treatment being to obtain the most potent combination of drugs with the
simplest regimen. At present there are no established criteria for choosing one psychotropic
over another. Physicians can follow simple guidelines based on the associated symptoms
and character of the pain.

 

 
 

 

5-16 American Psychiatric Association AIDS Primer

 

The success of tricyclic antidepressants as narcotic adjuvants rests largely on evidence
that these agents act in reticular and limbic components of the central nervous system
involved in pain transmission. Regardless of the presence of a clinical depression, tricyclic
antidepressants can sometimes provide significant pain relief. The routine use of tricyclic
antidepressants, adopted from the model established in chronic pain clinics, should,
however, be avoided in HIV patients as the central antihistaminic and anticholinergic
effects can produce unwanted toxicity (101). In general, it is recommended that the use of
tricyclic antidepressants in HIV patients with pain syndromes be restricted to situations in
which depression coexists with a treatable pain syndrome, insomnia is present despite
adequate analgesia, the use of benzodiazepine is contraindicated or when cases of
deafferentation and causalgic pain are refractory to treatment with anticonvulsants (129).

The usefulness of neuroleptics (phenothiazines, thioxanthenes and butyrophenones) to
augment the effects of narcotic analgesia has long been known. Specifically,
butyrophenones have been shown to potentiate the effects of morphine, both acutely and
chronically (130). In addition, some of these agents have been found to bind specifically to
opiate receptors (131) and thus further strengthen the observations of neuroleptanalgesia.
The neuroleptics’ affinity for the mesolimbic dopamine pathways is theoretically of added
benefit in diminishing affective experience associated with pain.

The value of anticonvulsants in the management of deafferentation causalgic pain from
various sources, including phantom breast, limb, bladder and rectal pain, has been proven
in the arena of oncology (132). Carbamazepine, valproic acid, and clonazepam have all
been found to be effective in reducing deafferentation-type pain. The clinical utility of
anticonvulsants in the treatment of this severely debilitating pain syndrome is unsurpassed
with up to 70% effectiveness cited in studies. Many HIV-infected patients suffer from this
disabling type of pain secondary to peripheral nerve involvement by either HIV or other
viruses or neuropathies secondary to treatment. As yet, no studies of the efficacy of
anticonvulsants in the management of pain syndromes in HIV disorders are available.
Anticonvulsants are recommended for HIV patients with deafferentation causalgic pain
from any etiology.

Stimulants potentiate the effects of narcotic analgesics, reduce narcotic requirements and
counteract the adverse central nervous system effect of narcotics while restoring vital
processes such as mood, affect, psychomotor activation, and other neurocognitive
functions. Doses of 5 mg to 20 mg orally of dextroamphetamine sulfate or its equivalent for
methylphenidate can significantly improve the patient’s analgesia and quality of life.

Neurotoxicities
It has been stated that cytotoxic chemotherapy is the art of differential poisoning; its aim
is to destroy the tumor before the drugs kill the patient (134). The same is true for the agents

 

 
 

 

American Psychiatric Association AIDS Primer 5-17

 

used to treat HIV disease. Unfortunately, an often overlooked area is that of central
nervous system toxicities (135).

Central nervous system complications with antineoplastic agents range between 5% and
86% for varying classes of drugs (136). Psychiatric disturbances are often poorly defined as
little is known about the long-term sequelae of treatment with these agents. For the
purposes of this discussion, antineoplastic agents that have been associated with
neuropsychiatric toxicity in HIV disorders will be described.

The vinca alkaloids (vincristine, vinblastine and vindesine) act by inhibiting cellular
microtubule formation, blocking mitosis and cell replication (136). These agents are used to
treat different malignancies and are very effeciive in the management of Kaposi’s sarcoma.
They are known to cause peripheral and cranial nerve neuropathies as well as autonomic
effects. Lipophilicity and neurotoxicities are highest with vincristine and lowest with
vinblastine. Vincristine specifically has been shown to cause psychiatric neurotoxicity
ranging from irritability and dysphoric moods to depression, seizures and coma (137).
Vinca alkaloids may exert their depressogenic effects by inhibiting dopamine
betahydroxylase, the terminal enzyme in the conversion of dopamine to norepinephrine
(i.e., an methyldopa-like effect) (138).

Interferons and interleukin-2 produce various neuropsychiatric toxicities including
drowsiness, fatigue, neurasthenia, peripheral neuropathy, confusion, hallucinations,
psychosis and seizures (139-140). This neurotoxicity is additive with vincristine therapy.

Steroids can cause psychosis, depression and lability of mood (141). Subtler subclinical
changes may go unrecognized and untreated. Although the neuropleptics can be used
effectively for steroid-induced mood lability, lithium carbonate should be considered
prophylactically if patients are experiencing maniform mood changes (142). The depression
associated with steroid treatment is much harder to treat than the manic or hypomanic
syndrome associated with these agents.

Cisplatinum is the first heavy metal used as an antineoplastic agent and is being
advocated experimentally for the treatment of Kaposi’s sarcoma. It crosses the blood/brain
barrier minimally, and cerebral events are thought to be associated with significant
metabolic alterations due to renal tubular dysfunction. Depression has been associated with
the use of platinum compounds as have peripheral neuropathies.

Bleomycin, also used in the treatment of Kaposi’s sarcoma in combination with
vincristine, has been noted to cause peripheral neuropathy, cerebral vascular accidents and
disturbances of consciousness and cognition (136).

There is insufficient information available to comment specifically on the
psychoneurotoxicity. that may be associated with antivirals and immune therapies.

It is imperative that in the development of these agents an attempt be made to measure
subjective and objective evidence of quality of life as well as cure and survival (144). As the

 

 
 

5-18 American Psychiatric Assoctation AIDS Primer

 

management of the HIV disorders becomes more aggressive, treatment-related morbidity
has to be addressed. Many of these regimens require that therapies be given daily or
intravenously over extended periods of time, and increase the risk of multiple toxicities.
This places an enormous burden on the patient. Attempts to delineate treatment related
factors that negatively affect quality of life must examine:

. physical, material, and psychological well-being;
. relationships with other people;

. social, community, and civic activities;

. personal development and fulfillment; and

‘in f& Ww KW =

. recreation.

These issues have yet to be systematically studied.

It is important to remember that quality of life is not a static dimension but rather a
dynamic process with changing values, changing patterns of function and changing levels of
satisfaction over time. No matter how well-meaning we are as caregivers, we must be
careful not to intrude on the patient’s judgment of his or her quality of life with our
preconceived ideas of what is best for the patient. It is important that as caregivers we
encourage active patient participation in the diagnosis and treatment of HIV-related
disorders whenever possible and not underestimate human resilience in compensating for
major infirmity.

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American Psychiatric Association AIDS Primer 5-25

 

'

100.

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Tupin IP: “Focal ‘neuroleptization: an approach to optimal dosing for initial and
continuing therapy. J Clin Psychopharmacol 5:155, 1985.

Richardson JW III, Richelson E: Antidepressants: a clinical update for medical
practitioners. Mayo Clin Pro 59:330, 1984.

Gelenberg AJ: The rational use of psychotropic drugs: prescribing antidepressants.
Drug Ther 9:95, 1979,

Goldberg RJ, Mor V: A survey of psychotropic use in terminal cancer patients.
Psychosomatics 26:745, 1986.

Sheehan DV, Claycomb JB: The use of MAO inhibitors in clinical practice. In,
Manschreck TC, Murray FB (eds.) Psychiatric Medicine Update. New York, Elsevier
Science Publishing, 1984.

. Robins E: Psychiatric emergencies: suicide. In, Kaplan H, Sadock BJ (eds.)

Comprehensive Textbook of Psychiatry. Baltimore, Williams and Wilkins, 1985.
Blackwell B: Adverse effects of antidepressant drugs. Drugs 21:201, 1981.
Fernandez F: personal communication.

Fernandez F, Adams F: Methylphenidate treatment of head and neck cancer. Head
and Neck Surgery 8:296, 1986. . ;

Fernandez F, Adams F, Levy JK, et al: Depression and cancer: an update. Tex Med
82:46, 1986. .

Fernandez F, Adams F, Holmes VF: Methylphenidate for depressive disorders in
cancer patients. Psychosomatics, in press, 1987.

-Woods SW, Tesar GE, Murray GB, et al: psychostimulant treatment of depressive

disorders secondary to medical illness. J Clin Psychiatry 47:12, 1986.

Kaufman MW, Cassem N, Murray GB, et al: The use of methylphenidate in
depressed patients after cardiac surgery. J Clin Psychiatry 45:82, 1984.

Fernandez F, Nichols SE, Beckett A: personal communication.

Fernandez F, Adams F, Levy JK, et al: AIDS-related complex cognitive impairment
and its response to psychostimulants. Data presented at International Conference on
AIDS, Paris, France, June 23, 1986. ,

Fernandez F, Levy JK, Galizzi H: Human Immunodeficiency Virus related
depression 2d its response to psychostimulants. AIDS Research, in press, 1987.
Faraj. BA, Israili ZH, Perel JM, et al: metabolism and disposition of
methylphenidate-(14)C: studies in man and animals. J Pharmacol Exp Ther 191:535,
1974.

 

 
 

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117,
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Tesar GE: The role of stimulants in general medicine. Drug Therapy, July:186, 1982.
Fernandez F, Beckett A: personal communication.

Greenblatt DJ: Clinical implications of pharmacokinetic differences among
benzodiazepines. Supp/ Act Med Int - Psychiatric, 2:8, 1985.

Fernandez F: personal communication.

Ballenger JC: Psychopharmacology of anxiety disorders. In, Symposium on Clinical
Psychopharmacology. The Psychiatric Clinics of North America, Philadelphia, W.B.
Saunders, 1984.

Katenholz KV, Crisman ML: Buspirone, a novel nonbenzodiazepine anxiolytic. Clin
Pharm 3:600, 1984.

Foley KM: The treatment of cancer pain. N Engl J Med 313:84, 1985.

Bouckoms AJ: Recent developments in the classification of pain. Psychosomatics
26:367, 1985.

Kaiko RF, Foley KM, Grabinski PY, et al: central nervous system effects of
meperidine in cancer patients. Ann Neurol 13:180, 1983.

Berkowitz BA: The relationship of pharmacokinetics to pharmacological activity:
morphine, methadone and naloxone. Clin Pharmacokin 1:219, 1976.

Cassem N: Pain. In, Current Topics, Scientific American Medicine. New York,
Scientific American, Inc., 1983.

Kocher R: The use of psychotropic drugs in the treatment of cancer pain. In,
Zimmerman M, Drings P, Wagner G (Eds.) Recent Results in Cancer Research: Pain
in the Cancer Patient. Berlin, Springer-Verlag, 1984.

Fernandez F, Adams F, Holmes VF, et al: Adjuvant pain treatment in cancer: a case
for psychopharmacology.7ex Med, in press, 1987.

Head M, Lal H, Puri S, et al: Enhancement of morphine analgesia after acute and
chronic haloperidol. Life Sci 24:2037, 1979.

Maltbie A: Analgesia and haloperidol: a hypothesis. J Clin Psychopharmacol 32:323,
1979.

Swerdlow M: Review: anticonvulsant drugs and chronic pain. Clin Neuropharmacol
7:51, 1984.

Twycross RG, Lack SA: Co-analgesics. In, Twycross RG, Lack SA: Symptom
Control in Far Advanced Cancer: Pain Relief. London, Pittman Books, 1983.

Priestman TJ: Quality of life after cytotoxic chemotherapy. J Royal Soc Med 77:492,
1984.

 

 
 

 

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135.
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Fernandez F: Psychotoxicity from antineoplastic agents. J Clin Oncol 5:319, 1987.

Kaplan KS, Wiernik PH: Neurotoxicity of antitumor agents. In, Perry MC, Yarbro
JW: Toxicity of Chemotherapy. New York, Grune and Stratton, 1984.

Silberfarb PM, Holland JCB, Anbar D, et al: Psychological response of patients
receiving two drug regimens for lung carcinoma. Am J Psychiatry 140:110, 1983.

Thoa NB, Wooten GF, Axelrod J, et al: Inhibition of release of dopamine-B-
hydroxylase and norepinephrine from sympathetic nerves by colchicine, vinblastine
and cytochalasin-b. Proc Natl Acad Sci USA 69:520, 1972.

Adams F, Quesada JR, Gutterman JV: Neuropsychiatric manifestations of human
leukocyte interferon therapy in patients with cancer. JAMA 252:938, 1984.

Quesada JR, Talpaz M, Rios A, et al: Clinical toxicity of interferons in cancer
patients: a review. J Clin Oncol 4:234, 1986.

Ling MHM, Perry PJ, Tsuang MT: Side effects of corticosteroid therapy. Arch Gen
Psychiatry 37:737, 1981.

Falk WE, Mahnke MW, Poskanzer DC: Lithium prophylaxis of corticotropin
induced psychosis. JAMA 241:1011, 1979.

Young DF: Neurological complications of cancer. In, Silverstein A (ed.) Neurological
Complications of Therapy. New York, Futura Publishing Company, 1982.

Schipper H, Levitt M: Measuring quality of life: risks and benefits. Cancer Treat Rep
69:1115, 1985.

de Haes JCJM, Van Knippenberg FCE: The quality of life of cancer patients: a
review of the literature. Soc Sci Med 20:809, 1985.

Brinkley D: Quality of life in cancer trials. Br Med J 291:685, 1985.

Selby P: Measurement of the quality of life after cancer treatment. Br J Hosp Med
33:266, 1985.

Morris JN, Suisa S, Sherwood S, et al: Last days: a study of the quality of life of
terminally ill cancer patients. J Chron Dis 39:47, 1986.

 

 
 

 

 

PREVENTION OF HIV INFECTION
AND DISEASE

David G. Ostrow, M.D., Ph.D.

INTRODUCTION

Infection with HIV leads to permanent incorporation of the virus’s genetic information
into cells of the human host, causing the host to be infectious for a long period of time,
perhaps for a lifetime. Those who develop AIDS may spread the virus in the months or
years before symptoms appear. Given the current inability to eradicate the infection once it
is established and the difficulty in developing an effective vaccine, interrupting the chain of
spread of infection is the ‘only available way to prevent AIDS and other HIV-related
illnesses. AS most documented routes of transmission involve two pleasure-seeking
behaviors, sexual intercourse and intravenous drug use, altering these behaviors will often
require the skills of psychiatrists and other mental health caregivers.

As shown in Figure 1, while an individual may desire to change behavior because of a
fear of contracting AIDS, the benefits derived from the behavior, such as sexual pleasure
and intimacy in the case of intercourse, and the euphoria and relief from withdrawal
symptoms in the case of IV drug use, may hinder his or her ability to follow through with
the intended behavior change. The inability to abandon such pleasurable or compulsive
behaviors despite the fear of AIDS can produce considerable psychological distress that
further interferes with behavioral change.

The long interval between exposure to HIV and the actual development of disease further
complicates the relationship between fear of disease and behavioral interruption of viral
transmission. As with other lifestyle-related disease problems, such as cigarette smoking
and lung disease or obesity and heart disease, defenses such as denial and displacement
diminish the perceived degree of vulnerability associated with the behavior (1).

The role of psychiatry in changing behaviors that can spread HIV was minimized until
recently. This probably resulted from the focus on the medical and epidemiological aspects
of AIDS, which seemed more pressing in the epidemic’s early years. In addition, the
perception that AIDS was a disease of homosexual men and of intravenous drug users

American Psychiatric Association AIDS Primer ‘ 6-]

 

 
 

6-2

American Psychiatric Association AIDS Primer

 

A STRUCTURAL MOOEL OF
THE PSYCHIATRIC EFFECTS OF AIDS

 

 

=>

FEAR DESIRES TO CHANGE

 

MOTIVATES
“DRIVES”
IMPACTS

ESISTANCE
TO

CHANGE
BEHAVIOR

 

Q. —_—a——

o |
© = "INCREASED FEAR —
Z SS

  
  
 
    

  
 
 

    
  
 

  
 

COGNITIVE AND
BEHAVIORAL ~~

ZAPI

From: Ostrow, 0.G. A Psychiatric Overview of AIDS
international J Neuroscience, 1986

a

 
     

FIGURE 1

 

 

 
 

American Psychiatric Association AIDS Primer 6-3

 

undoubtedly made some psychiatrists reluctant to become involved in prevention efforts.
As HIV infection and concern about vulnerability spreads beyond the so-called ‘risk
groups,” the role of mental health professionals in preventing the spread of HIV and in
dealing with the infection’s psychological morbidity has become evident.

This paper reviews current knowledge about preventing HIV infection through
behavioral modification and addresses the role of HIV antibody screening and the role
psychiatrists can play in AIDS prevention.

THE HEALTH BELIEF MODEL OF AIDS PREVENTION

The earliest AIDS prevention efforts were launched by the gay community. Therefore,
much of what we know about the importance of modifying sexual behaviors in response to
the epidemic comes from studies of gay and bisexual men. The knowledge gained from
these studies can be extrapolated to other groups.

A useful model for organizing this knowledge is the ‘‘health belief?’ modet (2,3), which
attributes health-related behavior changes to factors that either promote or retard the
desired change. These factors include:

¢ the individual’s knowledge of health risks and behaviors related to risk;

e the perceived level of health risk;

e the perception of the effectiveness of behavioral change in altering that risk;

® the availability of medical or mental health services;

¢ belief in technological cures or preventions (such as in a vaccine against HIV
_ infection);

® osociodemographic factors; and

¢ availability of peer support for the behavior change.

Prospective studies of cohorts of gay men have validated the importance of several of the
components of the health belief model as applied to the sexual transmission of HIV and
have identified additional factors related to risk reduction in this group. These findings are
particularly relevant to mental health professionals as they would need to be routinely
addressed in the evaluation and treatment of any patient presenting with a sexual behavior
and/or substance abuse problem.

Knowledge about AIDS has been shown to be most important in motivating initial
behavioral change, particularly in persons who see themselves as being at relatively low risk
and are initially less informed about the disease and the routes of HIV transmission.
Knowledge alone, however, does not promote long-term sexual behavior change, as has
been shown with other sexually transmitted conditions including teenage pregnancy.

Perception of personal risk appears to be more important than objective knowledge in

 

 

 

 
 

6-4 American Psychiatric Association AIDS Primer

 

motivating behavioral change (4). This may be related to the frequently observed
“‘optimistic bias’’ (5), which was expressed in the Chicago cohort study by persons who said
that they felt they could choose safe sexual partners or that ‘‘it won’t happen to me’’ (6).
This would appear to be an important area of potential intervention by psychiatrists who
are in a position to help patients realistically assess their behavior and risk of HIV infection.
Public media messages to the ‘‘general population’’ need to be aimed at disrupting denial
systems that enable individuals to avoid confronting AIDS prevention issues by attributing
the problem to persons in so called ‘‘high-risk’’ groups.

An individual’s perception of the efficacy of behavioral change in reducing his or her risk
of HIV infection appears to play an important role, except in persons who perceive
themselves to be at the highest risk of infection (7,8). This latter group may believe that it is
‘too late’ for them to avoid infection due to the long latency period between infection and
disease and the lack of lifestyle changes proven to reduce the likelihood of developing illness
once infected. To overcome this obstacle to behavioral risk reduction, research efforts to
pinpoint lifestyle or psychosocial cofactors of disease progression in HIV-infected
individuals are needed. Also unclear at this time is the role of widespread HIV antibody
testing in preventing infection. Some persons will. react to a positive test result with an
increased sense of futility, while others will experience increased stress; both reactions can
compromise risk-reduction efforts (9).

Belief that science will provide a cure or preventive measure was correlated with increased
numbers of partners and persistence of high-risk sexual practices in both the Chicago and
San Francisco studies. Osborn has written that premature reports of vaccine or
chemotherapy breakthroughs can have a negative impact on health behaviors and public
attitudes about AIDS (10). Overconfidence in technological solutions to health problems
may reflect incorrect knowledge or be a form of denial of individual risk.

Demographic variable variables that consistently influence health behavior change are
geography, financial condition, race, and age. With high-risk behaviors, geographical
differences are related to the degree of saturation of HIV positivity and the likelihood of
having a close friend or lover with AIDS (7). Of particular interest is the finding that
increased age and years of homosexual activity are associated with the persistence of
high-risk activity. This was previously demonstrated for gay men at risk of hepatitis B
infection (11), and suggests that sexual behavior patterns may become increasingly resistant
to change over time.

There may be important differences between white and black men regarding factors that
motivate or retard risk-reducing behavioral change. The few studies that have examined
racial differences in health related behaviors suggest the existence of significant differences
not entirely explainable by economic or educational factors (12). However, the health belief
model strongly suggests that’ the relative unavailablity of health care and counseling services

 

 
i

American Psychiatric Association AIDS Primer 6-5

 

would make AIDS prevention education efforts more difficult in disadvantaged
populations. The higher AIDS incidence rates and HIV infection rates in minority
populations may, in part, reflect the barriers to accessible health care services faced by a
significant proportion of minority group members.

While earlier ‘studies demonstrated that social support. networks facilitate positive health
behavioral change, the findings of the Chicago cohort study suggest a complex relationship
between social support, peer norms and behavioral risk reduction (8,13). While
membership in a gay social network was not predictive of behavioral change, the presence
of peer norms supportive of such change was consistently and positively associated with
sexual risk reduction over time. In particular, increased use of condoms and expressed
satisfaction with ‘‘protected’’ intercourse was found to occur after educational materials
stressing the ‘‘normalcy”’ and ‘‘fun’’ of condom: use in intercourse (14). These findings
suggest that specific elements of peer support for ‘‘safer sex’’ practices need to be addressed
in any community-based risk-reduction program. Similar findings are beginning to emerge
from studies of programs aided at ‘changing intravenous drug use behaviors, such as bleach
to clean syringes (15).: °

Sexual impulse control is.a complex variable related to a broad set of biobehavioral
factors including personality traits, setting, psychoactive substance use, partnership status,
and affect (16). The Chicago research group has assessed the perceived ability to control
sexual impulses as a means of measuring the compulsive aspect of sexual behavior. Not
surprisingly, reported ability to control sexual impulses was found to be ‘significantly
related to reduction in the number of sexual partners and to modification (via condom use
or withdrawal) of anal intercourse (8,13,17).

The recent finding that alcohol and recreational drug use patterns are related to the
ability of persons to reduce the risk of sexual exposure to HIV is not surprising. Both the
San Francisco and Chicago studies have found significant positive correlations between all
categories of recreational drug and alcohol use and the persistence of high-risk sexual
behaviors (18,19). That these findings were not related to absolute numbers of sexual
partners but were related to the use of drugs with sexual partners in both studies supports
the notion that the disinhibiting effect of recreational drugs is an important mediator of the
association. Additional research into the relationship between psychoactive substance usé
and persistent high-risk sexual behaviors is-impeded, however, by scientific and social
restrictions on sexual behavior research. Regardless of the mechanism of the association,
the significance of these findings to psychiatric interventions is clear: a complete assessment
of drug and alcohol use is a necessary part of any evaluation, and explicit counseling
regarding the role of substance use in impeding HIV risk reduction is warranted for all
patients reporting recreational drug or alcohol use.

The Chicago study found that condom use was more consistent and protective against

 

 

 

 
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6-6 American Psychiatric Association AIDS Primer

 

HIV infection when used in the context of a monogamous relationship (14). Given the
vehemence of the public debate over whether or not promoting condom use also promotes
promiscuity, it is perhaps important to note that condoms are far from foolproof and
require a high degree of cooperation by both members of the couple using them in order to
be effective. Mass media campaigns that promote the use and availability of condoms need
to include specific information about the proper use of condoms. In individual counseling,
mental health professionals should point out the need to discuss the use of condoms before
beginning sexual intercourse, their relative failure rates, and the relative safety of
intercourse with a condom vs the various forms of ‘‘safe’’ sex listed in Table 1. Just as
alcohol or drug use reduces the ability to drive safely, the ability to use a condom properly
will be diminished by prior psychoactive substance use.

TABLE 1
ASSESSING YOUR PATIENT'S LEVEL OF AIDS RISK

SAFE POSSIBLY SAFE UNSAFE
Mutual masturbation Anal or vaginal intercourse Receptive anal inter-
(male or female) with a condom course without a condom
Social kissing (dry) Fellatio (sucking-stop Insertive anal inter-
before climax) course without a condom
Body massage, hugging Mouth to mouth kissing Manual-anal intercourse
(French kissing, wet (fisting)
kissing)
Body-to-body rubbing Urine contact (water Fellatio (sucking)
(frottage) sports)
Light S & M activities Oral-vaginal contact Oral-anal contact
(without bruising or (cunnilingus) (rimming)
bleeding)
Using one’s own sex toys Any activities involving

bruising or bleeding
(heavy S & M)

In summary, each aspect of the ‘‘traditional‘* health belief model of behavioral change,
as well as the additional factors of sexual impulse control, peer support/integration, and
psychoactive substance use, has significant implications for risk-reduction counseling and
education efforts regarding the sexual spread of HIV infection. While the research findings

 

 

 
 

American Psychiatric Association AIDS Primer 6-7

 

summarized above have been based almost exclusively on homosexual men residing in large
urban areas and of relatively uniform socioeconomic and racial backgrounds, it is likely
that similar or analogous factors will be found important in studies of heterosexual
behavioral change and in other demographic populations. What will differ, of course, is the
degree of accessability of persons to health-care systems, educational materials, and
community support systems depending on geographic, ethnic, language, racial, and
economic factors.

A major problem not readily investigated through cohort research is the difficulty of
promoting behavioral change in persons, who do not recognize that their behavior places
them at risk, such as the ‘‘closeted’’ bisexual man, the ‘‘swinging’’ heterosexual, or the
occasional ‘‘weekend’’ intravenous drug user. Such persons may have extremely strong
systems of denial that prevent their recognition of the threat of HIV infection in themselves
or their intimates. While they are not available for study through voluntary research or
testing programs, a indicator of the importance of reaching these individuals is provided by
the results of blood donation screening programs. When detailed epidemiological
investigations were possible, a majority of blood donors found to be HIV antibody positive
reported behavioral risk factors identified when detailed epidemiological investigations
were possible, but they denied membership in an ‘‘AIDS high-risk group.” For this and
other reasons it seems crucial that education and counseling efforts aimed at reducing HIV
infection risk stress the importance of specific behaviors rather than risk group membership
in determining any individual’s level of risk. Table 1 lists sexual behaviors by level of HIV
transmission risk independent of membership in any particular group.

THE ROLE OF HIV ANTIBODY TESTING IN PREVENTION

The counseling of individuals who undergo HIV antibody testing is reviewed elsewhere in
this Primer and will not be discussed here. Rather, this section will present the currently
available findings on the effectiveness of testing in promoting behavioral change aimed at
reducing the transmission of HIV infection. Such information is scanty, however, for a
variety of reasons. For one, the HIV antibody test has only been widely available since
mid-1985. In addition, concerns about the confidentiality of test results have lead to largely
anonymous testing programs, in which follow-up investigations of behavioral change are
extremely difficult if not impossible. Finally, the enormous recent increase in media
coverage of AIDS and HIV infection makes it unlikely that changes observed over time in
persons who know their HIV serostatus can be simply related to the test itself. However,
several studies have addressed this issue, and a number of CDC-sponsored demonstration
projects to assess the role of HIV antibody testing in AIDS prevention are currently
underway.

 
 

 

“6-8 - American Psychiatric Association AIDS Primer

in

Fox, et al.,.examined sexual behavior change in gay men who elected to learn their HIV
serostatus. compared with the behavior of gay men who had not yet elected to do so (20).
They found that while the overall trend was toward:decreased sexual exposure risk over the
six-month assessment period, men who learned that they were HIV antibody negative were
significantly less likely to reduce their level of potential exposure than seronegative men
who did not request their antibody results. No difference was found between seropositive
men who knew their serostatus and those electing not to learn their serostatus. The
investigators concluded that testing, particularly if the result is negative, might have'a
negative impact on HIV infection prevention efforts.-The applicability of this finding to
men not enrolled in an intensive prospective AIDS study or to heterosexuals at risk of
exposure is‘not known. ,

- Case, et al., (21) in San Diego and Valdiserri, et al., (22) in‘Pittsburgh have examined the
attitudes of men ‘towards learning their HIV serostatus. In both studies, a majority of
persons wishing to learn their HIV antibody status gave ‘‘wanting to know whether or not
they had been. infected’’’as a reason, while a majority of those not wanting to know their
test results cited the lack of predictiveness of the test as the explanation for their decision.
About one third of the men wishing to be tested cited'the need to know their serostatus so
they could make behavioral changes, while about half of the men not wanting to know their
serostatus cited the.psychological effects of a positive test as a reason for declining. Neither
study: examined concerns about discrimination or the intention to enter an experimental
treatment program as factors related to the desirability of knowing ones HIV serostatus,
presumably because these were not significant issues at the time the studies were initiated.

In the Chicago cohort study, the investigators observed a significant increase in fear of
discrimination or violence corresponding to proposals to make HIV seropositivity a
reportable condition in Illinois (23). In addition, the researchers recently reported
significant mental health dysfunctions, such as increased depression symptoms and suicidal
ideation, in ‘a subgroup of men learning of their seropositive status (9). That study also
confirmed a lack of any positive influence of HIV antibody testing on sexual behavior

change. '
‘ The role of HIV serological testing in AIDS prevention programs involves complex issues

requiring more investigation. The issue of discrimination based on HIV seropositivity is
real, however, and may require statutory protections. At the same time, as the number and
diversity of. persons with AIDS continue to rise, and the availability of therapeutic
interventions increases, pressure for widespread routine screening will undoubtedly
increase. This pressure will be intense in medical and psychiatric inpatient settings where the
need to identify HIV-related illness for therapeutic purposes is increasingly evident. The
above cited studies, however, argue strongly for the availability of non-coercive voluntary
testtig with stringent confi dentiality and psychological support services wherever such
testing occurs.

 
 

 

©

American Psychiatric Association AIDS Primer 6-9

 

Clinicians must be sensitive to the fears of patients regarding their test results and to the
issues of discrimination and stigmatization. Crucial components of this sensitivity are a
non-coercive stance and the provision of truly informed consent, whether or not it is
required by statute or facility regulation. At a 1987 CDC-sponsored meeting on the role of
HIV antibody testing in medical settings, the consensus was that mandatory testing was not
appropriate under any circumstances. Obviously, behaviorally disturbed patients who
present a clear danger to themselves or other patients will need to be handled according to
state mental health code procedures. In states where existing mental health codes do not
address the issue of testing of committed patients, such statutes will need appropriate
revisions.

At present, psychiatrists are increasingly likely to have to decide whether or not to warn a
seropositive patient’s sexual or drug use partner(s) about the patient’s HIV status. Several
writers have recently cited the Jarasoff decision as a rationale for involuntary disclosure of
an individual’s HIV serostatus to an ‘‘endangered third-party’’ (24). These discussions
often ignore the complex legal issues that have arisen from the Tarasoff decision (25,26)
and erroneously assume that the responsibility to warn sexual or drug use partner(s)
automatically outweighs the confidentiality issues. Furthermore, such discussions often fail
to recognize the role of psychiatric treatment in motivating the patient to take responsible
action in protecting partners from potential HIV exposure, or warning them of their HIV
status. Those who seek legal solutions to behavioral problems risk neutralizing the healing
powers of the psychiatric profession.

At the most recent meeting of the APA’s Committee on the Psychiatric Aspects of AIDS,
members developed a number of consensus statements on psychiatrists and AIDS:

The care and treatment of the patient is of the utmost importance. Patients must be
confident that issues discussed with their physicians are private and will not be divulged.

Controlling the spread of HIV infection depends on the maintenance of a trusting
confidential relationship between physician and patient. If patients can not trust
physicians with the intimate details of their lives, communication between physicians and
patients will falter, ultimately hindering the ability to control the HIV epidemic.
Certainly any breach of confidentiality should be a last resort, only after scrupulous
attention has been given to all other alternatives.

Physicians should advise all patients of foreseeable limitations to confidentiality.

Before-a physician informs a potentially endangered person, the following conditions
should be met:

1. The patient has been informed at the initiation of treatment regarding the possible
disclosure of HIV infection.

 

 
 

 

6-10 American Psychiatric Association AIDS Primer

 

2. The physician must have knowledge that his or her patient is engaging in specific
behavior which has been medically documented to transmit HIV.

3. The physician must have knowledge that his or her patient is engaging in specific
behavior which has been medically documented to transmit HIV.

4. The physician must be convinced that the partner is unaware of the patient’s HIV
status.

5. The patient has been counseled and refuses to inform the potentially endangered
person.

6. The physician should be held liable for breaching confidentiality in violation of
these conditions.

These statements were given to the Ad Hoc Committee of the Board of Trustees on AIDS
Policy for incorporation into Guidelines for Psychiatrists on Confidentiality and
Disclosure. (These Guidelines, as well as Guidelines for Inpatient Psychiatric Units, are
appended.)

THE ROLE OF PSYCHIATRY IN AIDS PREVENTION EFFORTS

The preceding summary of what is known about preventing HIV transmission focuses on
behavioral aspects because of their direct relevance to psychiatry and the current lack of
other effective forms of prevention. That AIDS is truly a biobehavioral disease both in its
spread and expression is quite clear. The role of psychiatry in reducing the spread of HIV
infection and minimizing the resulting distress is similar to its role in preventing other
biobehavioral disorders, such as lung cancer or obesity. The involvement of an infectious
agent that can be transmitted and acquired unknowingly contrasts, however, with other
conditions where an implied consent of the person placing himself or herself at risk exists;
this clearly justifies a more proactive role for psychiatry in AIDS prevention.

Psychiatrists must help individuals avoid concepts such as ‘‘the innocent victim,’’ which
can inflame pre-existing prejudices and perpetuate the dangerous misconception that AIDS
and HIV infection are problems only for ‘‘high-risk’’ individuals. Psychiatrists need to help
patients to realistically assess their level of risk for exposure to HIV and counsel them
regarding behavior changes necessary to reduce that risk. Table | categorizes all types of
sexual behavior into the three categories of ‘‘safe,’’ ‘‘unsafe,’’ and ‘‘possibly safe’’ based
on our current levél of knowledge concerning the risk of HIV transmission.

Taking a sexual practices history is a difficult, time consuming and potentially
embarrassing task, and the reader unfamiliar with sexual history evaluation is referred ( °
several sources for guidance (27,28).

 

 

 
 

 

American Psychiatric Association AIDS Primer 6-11

 

If we are to apply our skills to this problem effectively, we must first be aware of the facts
and be sensitive to the complex issues arising from this unprecedented epidemic. No
problem requires a more comprehensive and energetic approach than the task of reducing
the spread of HIV infection without sacrificing the principles of confidentiality and
individual autonomy which underly the practice of psychiatry. Figure 2 summarizes the
potential roles of psychiatrists in combating AIDS, preventing HIV transmission, and
helping our society to cope effectively with the enormous levels of fear and distrust
unleashed by this epidemic.

AN INTEGRATED MODEL FOR
PSYCHIATRY’S POSITIVE ROLE
AND POTENTIAL IN AIDS

BEHAVIOR
Individual
Group CHANGE !S MOTIVATED BY
Societal
institutional Need for survival
Pleasure instinct
Altruism
Force

POSITIVE CHANGE IS FACILITATED BY

Peer support - social connectedness
Sense of mastery - effectiveness
Education

Substitute pleasures and profits
Confidence/trust

Availability of services

    
 
 
 
 

THE ROLE OF PSYCHIATRY

— Promote and enable positive behavioral change
— Minimize negative biologic, social and psychologic
consequenses

THROUGH

Research, education, therapy, social activism
and example

From: Ostrow, 0.6. A Psychiatric Overview of AIDS
international J Neurescience, 1986

FIGURE 2

 

 
 

6-12

American Psychiatric Association AIDS Primer

 

10.

ll.

12.

13.

14.

15.

REFERENCES

. Ostrow DG: A psychiatric overview of AIDS. Intl J Neurosci 29:1-13, 1986.

Becker M. [ed]: The Health Belief Model. Slack, Thorofare, NJ, 1974.

Maimom L, Becker M The health belief model: origins and correlates in psychological
theory. Health Ed Mono 2:236253, 1974.

Chilman C: Adolescent sexuality in a changing American society: social and
psychological perspectives. DHEW No. NIH 79-1426, 1979.

Weinstein N: Reducing unrealistic optimism about illness susceptibility. Health Psych.
2:11-20, 1983.

Ostrow DG, Joseph J, Monjan A, et al: Psychosocial aspects of AIDS risk.
Psychopharm Bull 22:678-683, 1986.

McKusick M, Wiley K, Coates T, et al: Reported changes in the sexual behavior of
men at risk for AIDS, San Francisco, 1982-84; The AIDS Behavioral Research
Project. Pub Health Rep 100:622-629, 1985.

Emmons C, Joseph J, Kessler R, et al: Psychosocial predictors of reported behavior
change in homosexual men at risk for AIDS. Health Ed Quar 13:331-345, 1986.

Soucy J, Ostrow DG, Joseph J, et al: Behavioral and mental health consequences of
HIV antibody testing. Proc and Abstracts, Annual Meeting, American Psychiatric
Association, Chicago, 1987.

Osborn J: AIDS, social sciences, and health education: a personal perspective. Health
Ed Quar 13:287-299, 1986.

Ostrow DG, Altman NL: Sexually transmitted diseases and homosexuality. Sex Trans
Dis 10:208-215, 1983.

Kessler R, Neighbors H: A new perspective on the relationships among race, social
class, and psychological distress. J Health Soc Behav 27:107-115, 1986.

Joseph JG, Montgomery S, Emmons CA, et al: Magnitude and determinants of
behavioral risk reduction: longitudinal analysis of a cohort at risk for AIDS. Psychol
Health, 1987.

Joseph JG, Montgomery S, Kessler R, et al: Two-year longitudinal study of
behavioral risk reduction in a cohort of homosexual men. Proc III Intl AIDS Conf.
Washington, D.C., p. 60, 1987.

Waters J, Newmeyer J: AIDS risk-factors among I'V drug users: needle use and sexual .

practices. Program and Abstracts 114th Annual Meeting of the American Public
Health Association, Las Vegas, 1986.

4 f

 

 

 
 

 

American Psychiatric Association AIDS Primer 6-13

 

16.

17.
“18.
19
20.
21.

22.

‘23.
24.

25.
26.

27.

28.

Levine S: A modern perspective ¢ on 1 nymphomania. J Sex Marital Therapy 8:316-324,
1982.

Joseph JG, Montgomery SB, Emmons.CA, et al: Perceived risk of AIDS: assessing
the behavioral and psychological consequences i in a cohort of gay! men. J Applied Soc
Psych 1987.

Stall R, McKusick L, Wiley.J,et al: Alcohol and drug use during sexual activity and
compliance with safe sex guidelines‘ for AIDS: The AIDS Behavioral Research
Project. Health Ed Quar 13: 359-371, 1986.

Ostrow DG, Keslow RA, Fox R, et al: Sexual and drug use behavior change i in men at
risk of AIDS. Program and Abstracts, 114th Annual Meeting of the American Public
Health Association 114:96 Ab, 1986:

Fox R, Odaka N, Polk BF: Effect of learning HTLV-III/LAV resting for gay
subsequent sexual activity. Proc II Intl AIDS Conf Paris, -1986.

Case D, McCutchan JA, Fantino E, et al: Implications of HTLV-III testing for gay
men. In: Ostrow DG (ed.) Biobéhavioral Contras of A AIDS New York, Irvington
Press, 1987.

Valdiserri RD, Lyter DW, Rinaldo CR: Factors influencing the decision to learn
HTLV-III antibody results. Program and Abstracts, 114th Annual Meeting of the
American Public Health Association, Las Vegas, p. 115 Ab, 1986. ~

‘Ostrow DG, Eller M,- Joseph J: Fear of quarantine: an emerging AIDS-related

psychosocial issue. Proc II Intl AIDS-Conf, Paris, p. 183; 1986.

Mills M, Wofsy, CB, Mills J: The acquired immunodeficiency syndrome: infection
control and public health law. N Engi J Med 314:931-936, 1986.

_Winsdale WJ: Confidentiality of medical records. : Legal Med 3: 497- 533, 1982.

Gostin L: AIDS: a review of science, health policy and law. In: Witt M. D. (ed.):
AIDS and Patient Management: Legal, Ethical and eaciat Issues. Owings Mills, MD,
National Health Publishing, east 7 oe

Ostrow DG, Obermaier A. Sexual practices history. In Ostrow DG, Sandholzer T,
Felman Y, (eds.): Sexually Transmitted Diseases in Homosexual Men: Diagnosis,
Treatment, and Research. New York: Plenum Publishing Company, 1983, pp. 13-22.

Group for the Advancement of Psychiatry. The Sexual Practice History. 1984.

 

 
 

 

6-14 American Psychiatric Association AIDS Primer

 

APPENDIX A
Guidelines for Psychiatrists on Confidentiality and Disclosure

Introduction

The AIDS epidemic presents difficult and perplexing issues, many of which involve
conflicts between the rights of infected individuals and the society’s interest in containing
the epidemic. Because these questions are highly controversial, and because so many
important scientific questions about the disease remain unanswered, a definitive public
health strategy has not yet emerged.

Physicians have an important role to play in controlling HIV infection. However, for
physicians, the care and treatment of individual patients is of the utmost importance.
Patients must be confident that issues discussed with their physicians are private and will
not be unnecessarily divulged. Certainly any breach of confidentiality should be a last
resort, only after scrupulous attention has been given to all other alternatives.

At the present time, the operational public health strategy promotes voluntary testing
while eschewing programs of contact tracing, surveillance, segregation, and other measures
that could discourage people from seeking testing. Many troublesome ethical and clinical
questions arise in the context of dealing with individual patients, and the purpose of this
document is to provide some guidance to members of the profession as they struggle to
honor their duty to preserve the confidences of their patients while taking adequate
precautions to protect other persons who may be at risk of contracting the disease.

Physicians should be aware that state laws may restrict some of the actions recommended
in these guidelines. Where conflict exists, attempts should be made to modify laws in
accordance with the principles expressed herein.

I. Confidentiality

Physicians have an ethical obligation to recognize the rights to privacy, to confidentiality,
and to informed consent of all patients. During the initial clinical evaluation, the physician
should usually make clear the general limits of confidentiality. If the physician has reason
to suspect the patient is infected with HIV (e.g., seropositive) or is engaging in behavior that
is known to transmit HIV disease, the physician should notify the patient of the specific
limits of confidentiality. Further, if the physician intends to inquire specifically about a
patient’s HIV status, the physician should, in such instances, notify the patient about the
limits of confidentiality im advarice of asking such questions.

 

 
 

 

American Psychiatric Association AIDS Primer 6-15

 

Il. Notification of Third Parties

In situations where a physician has received clinical information (based on the patient’s
own disclosure of test results or on documented test records) that the patient is infected with
HIV, the physician should advise and work with the patient either to obtain agreement to
terminate behavior that places other persons at risk of infection or to notify identifiable
individuals who may be at continuing risk of exposure. If a patient refuses to agree to
change behavior or to notify the person(s) at risk, or the physician has good reason to
believe that the patient has failed to or is unable to comply with this agreement, it is
ethically permissible for the physician to notify an identifiable person whom the physician
believes to be in danger of contracting the virus.

Ill. Disclosure to Third Parties

Mest states now require physicians to report cases in which they diagnose AIDS to a
public health agency, while only a few require the reporting of cases in which individuals
test positive for HIV. It is ethically permissible for a physician to report to the appropriate
public health agency the names of patients who are determined by convincing clinical
information (based on the patient’s disclosure of test results or documented test records) to
be HIV infected and whom the physician has good reason to believe are engaging in
behavior which places other persons at risk of HIV infection. Although we recognize that
public health agencies have varying responses to the problem at the present time, provision
of this information will allow them to take whatever measures they regard as appropriate.

 
 

6-16

American Psychiatric Association AIDS Primer

 

APPENDIX B
Guidelines for Inpatient Psychiatric Units

L

I. Patient Care

" In the medical setting, all available evidence indicates that AIDS is a disease of low
transmissibility. Education and counseling regarding HIV transmission continue to be
needed and should be available to physicians and other medical personnel. Historically,
physicians and other ‘medical personnel have been exemplary i in the treatment of patients,
even in situations of personal risk, and it is expected that this tradition will continue.

All psychiatric patients shail be treated based on their clinical condition; neither HIV
infection nor serologic status shall, in and of itself, impede the delivery of
appropriate medical-psychiatric t treatment.

HIV. serological testing should be performed o on a case by case basis with informed
consent when medically indicated. HIV serological testing should not be performed
solely for the purpose of routine screening or staff awareness.

Regardless of HIV serologic status, all inpatients should be considered potentially at

risk for transmitting or receiving HIV infection. A minimal standard of care should

include:

a. Implementation and monitoring of infection control procedures as outlined by
current CDC standards;

b. Appropriate management of affective, cognitive and behavioral disturbances to
ensure risk reduction for both patients and personnel;

c. Appropriate education and supportive services for patients, families and staff.

If a patient known to be HIV infected engages, or threatens to engage, in behavior
that places other individuals at risk, the responsible physician shall assure that
appropriate clinical steps are taken to control the behavior, and, if necessary, isolate
and/or restrain the patient.

II. Disclosure

Once a patient has been hospitalized on a psychiatric unit and responsibility for the
patient’s care has been assumed, a need to protect other patients and staff from foreseeable
dangerous behavior arises. In ithe situation where a particular patient is known to be HIV
positive, the following ‘additional guidelines are recommended.

 

 

 
 

 

American Psychiatric Association AIDS Primer 6-17

 

1. Deciding whether to disclose a patient’s HIV infection to other staff is a delicate
clinical question. The responsible physician should disclose the information to
appropriate staff only after discussions with the patient, when the physician
determines that appropriate treatment of the patient requires such disclosure.

2. If the patient engages in behavior likely to transmit the virus and there is a significant
risk that such behavior cannot be controlled by other measures, then disclosure of a
patient’s infectious condition to other patients at risk is permissible. Disclosure is not
a substitute for adequate clinical care, and it is usually inappropriate for the
physician or staff to disclose a patient’s HIV infection to other patients.

Ill. Discharge

At the time when discharge is otherwise clinically appropriate, and the patient represents
a substantial risk of danger to others by virtue of behavior known to transmit the virus, and
this danger is not related to a specific mental condition, it is inappropriate to retain the
person in the hospital solely for the purposes of quarantine or preventive detention.

 

 

 
 

| TESTIMONY OF '
LOIS J. WAGNER, M.S.N., R.N., R.N.P. |
AIDS PROJECT STEERING COMMITTEE
VANDERBILT UNIVERSITY, NASHVILLE, TENNESSEE

Before the Presidential Commission on the HIV Epidemic

January 14, 1988

 

 

 
 

 

I am Lois J. Wagner, M.S.N., R.N., F.N.P. I am a nurse clinician and a member
of the Vanderbilt AIDS Project Steering Committee. I also serve as Chair of
the Project's Committee on Counseling. The Vanderbilt AIDS Project is a multi-
disciplinary university-based educational, research, and service program of
Vanderbilt University Medical Center. The project provides a number of AIDS
related services in the mid-south region. It is an institutional member of the
East Central AIDS Education and Training Center and the National AIDS Network.
The Project began in August of 1985. The Counseling Committee of the
Vanderbilt AIDS Project was formed in January of 1987 to provide analysis and
recommendation to the Director of the Vanderbilt AIDS Project (Dr. A. Gene
Copello) regarding the current status and future directions of the project's
counseling program. The Committee is composed of nurses, social workers,
physicians and chaplains.

The Committee conducted an analysis of patient and institutional needs in
relation to psychosocial care of persons with AIDS not only in terms of then
current service delivery, but in anticipation of projected need. This analysis
was based on review of’the literature, case study analyses, information
obtained from the Vanderbilt AIDS Project pilot counseling program, a national
hospital survey regarding institutional response to psycho-social needs of
persons with AIDS and HIV infection and their significant others, and
interviews with key staff already working in AIDS and HIV related issues.

This analysis revealed a number of needs in the area of psycho-social care
of patients with HIV infection. It was found that professional staff had a
need for AIDS education information and counseling services to be readily
available within their institution. That there was a need for specialized
psychosocial counseling services for patients with HIV infection and

their significant others. That there was a need for a specialized multi-

 

 
 

 

2) It is recommended that institutions establish formal networks with
community organizations, universities, and Public Health agencies in
order to prevent duplication of services and promote adequate
utilization of all available services in the provision of psychosocial
care in any given region.

4) It is recommended that institutions have programs of ongoing
psychosocial research and program evaluation.

5) Where appropriate, it 1s recommended that student interns from all
disciplines be exposed to settings which require the psychosocial care
of persons with HIV infection. This will enhance the general level of
knowledge regarding AIDS among new health care providers and would
serve as an additional resource for institutions.

6) Finally, it is recommended that institutions remain apprised of trends
regarding the numbers of cases both within the institution and the
surrounding region so that services can be planned and implemented
accordingly.

Some institutions may feel a need to hire additional personnel in order to
implement these recommendations. Some may feel it sufficient to reallocate at
least at first, existing personnel. The number and cost of additional
personnel will vary according to institutional needs and regional differences,
both in terms of case load and salary scale. This makes it difficult to give
you precise figures. For example, regions with small case loads may require
one nurse/social worker team to cover several institutions while a major
hospital with a very high case load might require two or three teams to meet
the needs in the system.

There is, however, a potential for cost saving. Properly trained staff of

student interns exclusively involved in counseling and coordinating care for

 

 
 

STATEMENT OF EDWARD D. BARRETT, M.S., D.D.S.

TO THE PRESIDENTIAL COMMISSION ON THE HUMAN
IMMUNODEFICIENCY VIRUS EPIDEMIC

JANUARY 14, 1988

 

 
t o. #

ry » *

My name is Dr. Edward Barrett, and I am the’ Director of
Continuing Education at the University of Detroit School of

Dentistry. I also serve as president, of the Academy of General

v i

Dentistry, a national organization of 29,000 general dentists. On

behalf of the University and the Academy, I thank you for the

we ‘
> 4 .

opportunity to share my views on access to dental care.

coy 7 5

The growing need for dental care among HIV-antibody-positive

people is challenging, our knowledge ‘and our ability to treat

f

this special population. For people with AIDS, dental care can be
an urgent need. Because thésé’ BHOpIE: suffers impbne defieiencies, -
a seemingly minor oral infection can trigger a life-threatening

4

systemic illness.

t

a » 7 4 " ’
1 @ tee fa do of “V5 eh OBO cote ot ”

In trying to improve access to dental care for HIV-infected
people, the dental profession has responded’ in’ many ‘ways. Our

first and most important.task has been to educate ourselves on

Cw 4 r ‘yo ah, ¢ Oa tN Gies tee ; , .
the disease, so we can provide’ the level of care demanded by this

special population. Continuing education courses in-this area
are now among the best-attended. at professional

meetings. Hundreds of dental journals have, devoted substantial
amounts of space to articles informing the profession about
identifying, treating and preventing AIDS.

The vast majority of dentists nationwide has ‘responded to the

AIDS epidemic by adopting infection control measures recommended

mo

 

 
 

 

Testimony of Dr. Edward D. Barrett
Page 2

by the Centers for Disease Control and the American Dental
Association to protect their patients, staffs, families and
themselves. An October 1986 survey of 2,181 U.S. dentists
conducted by the ADA showed that only 23 percent of dentists
always wore gloves when treating patients. But in less than a
year, those figures have changed dramatically. In August 1987,
the Academy surveyed its membership--all of whom are members of
the American Dental Association--to find that 78.3 percent of
Academy members always wear gloves with patients. Eighty-seven
percent of Academy members use eye protection with all their
Patients, and more than 55 percent use masks with all

patients. It is important to note that this survey was conducted
after the June 1987 announcement that a dentist had developed

the HIV infection apparently through his practice--but before the
Occupational Safety and Health Administration began enforcing
regulations on personal protective equipment for health care
workers. In this case, dentists have responded to the AIDS

crisis independent of government intervention. And not
surprisingly, dentists are attending continuing education courses

on infection control in rapidly growing numbers.

Perhaps the most important issue here is thé availability of
providers and sites to care for AIDS patients. Dentistry has a
long tradition of providing care for populations with special

needs: the handicapped, the elderly, hemophiliacs, and other

 

 
 

 

Testimony of Dr. Edward D. Barrett
Page 3

medically compromised people. Many members of the dental
profession are responding to the needs of HIV-infected people

with courage and compassion.

In some aréas, professional organizations at.the local and state
level have taken action to provide care for HIV-infected people,
people with AIDS and ARC, and indigent people at varying stages
of infection. In Los Angeles, for example, AIDS Project/L.A.
works with the Los. Angeles County Dental Society to coordinate
volunteer dentists who provide care in a mobile facility

purchased by the county. Here in Washington,’ the Whitman-Walker
Clinic sees several HIV-infected dental patients a week, and
refers-others to private-practicing dentists. The Chicago Dental
Society has developed a referral system to send patients to
private dentists, to city, county or private clinics, and to area
hospitals and dental schools. Judging from the success of these

programs, the development of.such referral systems throughout the

nation would dramatically ‘improve access to dental care.

Some observers have criticized dentists in private practice for
failing to treat HIV-infected people. Some dentists, out of
ignorance and/or fear, have simply refused to treat HIV-infected
patients. But in other cases, outside forces are at work: for
example, at least one dental malpractice insurer has excluded

from coverage any claim arising from HIV-related dental

 

 
 

Testimony of Dr. Edward D. Barrett
Page 4

treatment. Many dentist are treating HIV-infected patients,
knowingly or unknowingly. Some patients are afraid to tell their
dentist about their HIV status. Other high-risk people simply do
not get tested and do not know their HIV status. Without
infection control techniques, the risks. of this behavior are
potentially enormous--from the standpoints of liability, the
health of the patient, and the safety of the staff and other
patients. But-I.believe that. these problems are becoming less
common as dentists and the public learn more about HIV. There’s
another problem, too: State confidentiality laws shouldnt
prevent a physician or HIV test site from informing a dentist of

a patient s HIV status.

Encouraging more dentists and dental facilities to treat
HIV-infected people must be done through education and
information, to both the profession and the public. The
profession needs to continue to learn how to provide the proper
care; the public must learn, through a massive educational
effort, that going to the dentist does not put their health at
risk. The government should take a much more active role in
providing funds for this educational effort and coordinating it

with the private sector.

Encouraging more dentists to treat HIV-infected people would take

some pressure off public and private hospitals, which now are

 

 

 
 

Testimony of Dr. Edward D. Barrett
Page 5

providing a great deal of dental care. At my own school, the
University of Detroit, our hospital dental clinic cares for
HIV-infected patients regardless of their stage of infection. In
San Prancisco, a great deal o acute care is being provided —
through the clinics operated by San Francisco General

Hospital. In a York, Bellevue and Columbia University hospitals
have outpatient dental clinics that care for HIV-infected people,
with waiting lists that range from two weeks to six months. Even
in these cities, “sone hospitals are providing dental care only to

those AIDS patients who are receiving medical treatment there.

Having described this load on the hospitals, I must caution
against attempts by the legislatures and courts to force a
dentist to provide care in his or her office to HIV-infected
people. A dentist who provides care to an AIDS patient in an
improper setting could do the patient harm. ‘That isn’t an
excuse to deny a patient care. A dentist is ethically bound to
provide care for his HIV-infected patients, or to make an

appropriate referral--that ‘s a message were trying to get out to

the whole profession.

Providing dental care for people with AIDS will demand a
well-coordinated, cooperative effort between the public and
private sectors. Large numbers of AIDS sufferers who have been

living "outside" society--drug abusers, prostitutes and

 

 
 

 

Testimony of Dr. Edward D. Barrett
Page 6

others--may develop acute care needs because of HIV-related
unfections. Many of these people cannot pay for basic medical
care, much less dental care; and because they have been outside
society and not receiving routine dental care, their oral health
problems are likely to be even more severe. But even those who
have received dental care throughout their lives are finding it
difficult to pay for care now as illness makes them unable to
work and their savings dwindle. Developing financing mechanisms
for this care may turn out to be an even greater challenge than

finding dental care for people with AIDS.

At the same time, we need to learn a great deal more about the
proper setting for treating of HIV-infected people. We do not
know, for example, whether it is more efficient and cost
effective to provide this care through HIV-dedicated facilities,
through hospitals, through public or private clinics, or through
individual dentists. I would encourage the federal government to
fund research and demonstration projects to get the answers to

these questions.

I wish the Commission the best of luck in developing ways to

prevent, treat, and ultimately cure this deadly disease.

Recommendations

l. Together with the private sector, the federal government

 

 
 

 

Testimony of Dr. Edward D. Barrett
Page 7

should fund and coordinate a national educational campaign
to inform the public about HIV in general, and about the

safety of health care services such as dental care.

In cooperation with professional organizations, the
government should help to educate dental personnel in caring
for HIV-infected patients and to reinforce the infection
control message with practical information on its
implementation. This will encourage dentists to treat

HIV-infected patients without fear.

States should use federal AIDS prevention funds to survey
dentists on their knowledge, attitudes and practices
concerning AIDS and infection control. Such surveys will
help determine what type of education is needed by the

dental profession.

The federal government should fund demonstration projects to
determine the cost-effectiveness and efficiency of caring
for HIV-infected people through AIDS-dedicated facilities,
hospitals, public or private clinics, or through individual

dentists.

All comprehensive AIDS treatment units should include dental

care; a dentist should be a member of every HIV health care

 

 
Testimony of Dr. Edward D. Barrett
Page 8

10.

 

team. Dentists should be fully integrated into AIDS

prevention and treatment programs.

State and federal funds should be earmarked for dental
treatment for the growing number of AIDS patients who are

Medicare and Medicaid beneficiaries.

The federal government should continue to fund clinical and
laboratory research to explore the range of oral problems
HIV-infected patients have, and on their effects on the rest

of the body.

The federal government should dramatically improve its
planning and coordination of AIDS prevention and education
activities among federal agencies, state and local

governments, and the private sector.

Private/public cooperation and community involvement should
be improved to develop dental care referral services and/or

treatment facilities.

With guidance from the Department of Health and Human
Services, dental schools should improve their HIV-related
curricula so dentists are willing and able and provide the

proper care to HIV-infected people. The Commission is urged

 

 
 

Testimony of Dr. Edward D. Barrett
Page 9

to review the report prepared by the American Association of

Dental Schools for CDC/HRSA.

Roorr rea ee ee eesrvt Te Th

 

 
 

Edward D. Barrett, M.S., D.D.S. is Director of Continuing
Education and Alumni Relations for the University of Detroit
Dental School. He serves as President of the Academy of General
Dentistry, a national organization of 29,000 general .
dentists. Dr. Barrett earned his M.S. in microbiology in 1949,
and his dental degree in 1954. He was engaged in the private
practice of dentistry from 1954 to 1984, and also held faculty
appointments in oral biology and microbiology at the University
of Detroit Dental School. Dr. Barrett served in the U.S. Navy

from 1944 to 1946.

Dr. Barrett has lectured extensively on infection control and
other areas of clinical interest throughout the U.S., Canada,
Europe and China. He has published numerous articles on
infectious diseases and infection control in dental professional
journals, and currently serves as editor of the Journal of the
Michigan Dental Association. Dr. Barrett served on the Governor
of Michigan’s Advisory Council/Expert Committee on AIDS from 1985

to 1986. He resides in Rochester, Michigan.

 
 

 

PAGE 415

Should we -- I would like to now introduce Or. Rogers
and, hopefully, you might be able to help us come to grips
with this issue. Dr. Rogers is Chairman of the Department of
Community Dentistry at Georgetown University School of
Dentistry here in Washington, D.C.

DR. ROGERS: Madame Chairman and distinguished
members of the Commission, I am Dr. Vincent Rogers, Chairman
of the Department of Community Dentistry at Georgetown
University here in Washington,’ D.C. Formerly, I was Assistant
Commissioner for Clinical Services with the Baltimore City
Health Department in Baltimore Maryland.

I am here today, however, to represent the American
Dental Association and thank the Commission for the
opportunity and privilege to address one of the most
challenging public nealth concerns of the 20th Century,
although, hopefully, not of the 2ist.

The catastrophic illness known as AIDS is commanding,
unabated, the attention of health care providers and the
population-at-large. Those of us in the health professions
are all too familiar with the monthly adjustments upward by
the Centers for Disease Control of mortality and morbidity
figures for individuals with AIDS and the projections for
those seropositive for the human immunodeficiency virus.

At present, as you are aware, the CDC reports, as of
December 1987, 28,000 deaths from AIDS, with 20,000 new

diagnoses in this same year. The current projections estimate

 

 
 

 

‘ ~e Ae eM, ' tee or Bs f

Aw

PAGE 416

almost 220,000, casgs, to, occur, by the year 1991.
Studies by the National ‘Institutes of Health and the
University of California at San Francisco reveal that

intraoral lesions ‘are’ among the first opportunistic infections

roe maTpeeaea,
that appear’ durine and after “the “brodrohal period of HIV

infection. In fact, 33 percent ‘or one-third of patients

?

evidence oral lesions as the primary or initial manifestation
of infection. |

‘Ninety-five ‘percent, of patients show some level of
lymphadenopathy or swelling im the- head and neck regions. A

study by Greenspan and others at the University of California

has demonstrated that 100 percent of patients diagnosed with

a

one form of opportunistic infection, namely, heiry leukoplakia

of the tongue, eventually develop full-blown AIDS within an

4
x

average of 30 months.

Further, for individuals with AIDS, the frequent
complications of common oral infections leading to general
discomfort and systemic opportunistic disease make access to
dental care critical to their, stabilization and well-being.

Clearly, therefore, dentists ard dental professions
have major roles to play in the early diagnosis, treatment,
counseling and referral of the HIV-infected person, as. well as
prevention in high-risk populations.

Research also. indicates that the AIDS virus can be
‘isolated in’ saliva, ‘ih addition to blood and other body

ny "OPRAH yg Les mg ?

t ,%

{

-. “% °e* -~ rm Pere oes cay grg SSP yOg yt rs @

 

 
 

 

PAGE 417

fluids.. Since few dental procedures can be rendered .without
contact with saliva, blood and aerosol contamination during
the course of treatment, dentists are concerned about their

level of risk of exposure in treating patients ‘with HIV
- ts ¢ >

’

# a . vis Bo.

infection.

Many dentists have begun to question their
obligations, ethically and legally, to continue or initiate
dental care to persons in any of the high risk categories or
with any stage of HIV infection, maintaining that risk of
exposure may jeopardize continuing ability to practice, the
health of auxiliary officef personnel and the health of other
patients.

Some members of the profession recommend that
referral of HIV infected individuals to special or dedicated
facilities or to hospital-based programs is more appropriate
because of perceived inability to maintain infection control
in the private or traditional dental office setting.

- These apprehensions and fears persist despite the
preponderance of scientific and ‘epidemiologic. research out of
CDC and NIH that risk is minimal when recommended infection
control procedures are followed, protecting both practitioners
and patients. Of 1,200 dentists -- and this refers to the
article today -- tested anonymously for the AIDS virus at the

1987 annual session of the American Dental Association, no

dentist tested positive for the presence of ‘the AIDS virus.

ws

oe teteer & (TEGO CaP eSyT Be Fp. PR ys

 

 
 

 

PAGE 418

As the focus of today’s session is upon access and
treatment, it is important for the American Dental Association
to clarify for the Commission and the dental profession as
well, its position on dental care for HIV infected persons in
order to assist in the formulation of rational national
policies, appropriate recommendations and effective strategic
responses for the country to address this crisis.

The American Dental Association wishes to stress the
commitment of the profession to fulfill its obligations to
care for all patients. The Association maintains that HIV
infected persons may be safely treated in private dental
office settings, with minimal risk to transmission of the
virus to other patients and dental personnel when established,
effective, infection control guidelines are followed.

Unless a patient’s physical, medical or mental
condition compromises the ability of the dentist to care for
the patient or treatment requirements jeopardize the patient’s
best interests in the private office setting, referral to
other sources of care should not be necessary. The patient’s .
best interests are served when he or she is allowed to
continue the relationship with his or her attending dentist.

ok Eas
Such is the policy inherent in the ADA’ s rinciplesaand Code
Xry Donal Canhuek
Of tries for all patients.
Inability to maintain proper infection control,

however, is not a valid justification for referral. Dentists

 

 
 

PAGE 419

should not abrogate their professional, ethical and legal
obligations under the pretext of behavioral deficiencies in
proven and established protocols for barrier techniques,
sterilization and prevention of cross-contamination in the
dental office.

The Association further supports initiatives to
develop a national policy on HIV infection, which can become a
basis for coordinated efforts by the public and private
sectors to educate the general public about the prevention of
HIV infection in all segments of the population. The oral
health aspects of HIV infection and issues related to the
practice of dentistry should be included in any national
policy and strategy to reduce and prevent transmission.

There should be no question that HIV infected
individuals should be treated with compassion and dignity. At
stake in the challenge of the AIDS epidemic is the status of
dentistry as a healing profession.. For the dental profession
to respond in such a manner that obligations to self-interest
override obligations to patients would be the beginning of the
erosion of the professional ethics and the trust that society
has placed in the health professions.

This trust is given legal sanction through the
conferring of licenses to practice dentistry and moral
sanction through the conferring of elevated status, which

dental and medical professionals enjoy im the community by

 

 
 

PAGE 420

reason of their special knowledge, skills and expertise.

The dental profession has responded in the past to
challenges of care for the handicapped, the elderly and the
economically disadvantaged, but the gravity and magnitude of
the challenge posed by HIV infection is mandating an
examination that goes beyond professional codes and ethical
analysis.’ °

Rather, the health professions must recommit
themselves to @ moral philosophy of care and carrying for
persons in need of our knowledge, our Skills, expertise and,
indeed, our ‘compassion. | The’ American Dental Association
believes it has the responsibility and obligation to serve the
needs of all patients, based upon current and emergent
scientific Knowledge and accepted legal, moral and ethical
imperatives.

‘The Association’s present policy is a dynamic one and
is not statié. It will be shaped in the future by scientific
research and information that will bring new enlightenment
“gsto this public health challenge. In this way, the best
interest of patients and the profession’s ability to respond
will be best served.

“I have several recommendations and will go on to
those.

To the extent that the U.S. has a tradition of appeal

to the President for executive intervention and guidance

 

 
 

 

PAGE 421

during times of national: emergency, that the Commission call
upon the President of the.United States to address the
American Medical Association, the American Dental Association,
the American Public Health Association and other health care
Coora.e 7
organizations to eomsertuare their: professional expertise and
ethical obligations to address the challenge of AIDS for the
country, drawing upon the American traditions of ingenuity,
resourcefulness and compassion for fellow citizens.

To the extent that health education and information
is essential for effective professional and lay response to
the AIDS epidemic, the ADA would encourage a national
initiative to coordinate federal, state and local efforts to
educate both the professions and the public to allay
irrational fears concerning risk of exposure for patients and
practitioners in dental settings.

To the extent that single males comprise the majority
of the group at-risk to HIV infection but receive low priority
in the determination of medical indigency in state Medicaid
programs and eligibility guidelines, that the Federal
Government advocate waivers at the state level to broaden
eligibility for and scope of dental services to foster early
diagnosis of oral manifestations of HIV infection, treatment
and prevention in this affected population.

To the extent that the black and Hispanic populations

in this country are disproportionately at-risk to HIV

Pe

 

 
 

 

PAGE 422

infection and least likely to have adequate health insurance
and access to care, particularly dental care, that the Federal
Government support waivers in the 51 state and District of
Columbia Medicaid programs to broaden eligibility for and
scope of dental services under guidelines of the respective
jurisdictions. Such expansion of eligibility and services
would foster access to dental care for early diagnosis, again,
treatment of oral manifestations of HIV infection and, of
course, prevention within the affected populations.

Finally, to the extent that dental care services are
frequently precluded from third party insurance programs for
services rendered in outpatient and inpatient settings, as a
consequence of complications and medical interventions, the
ADA would recommend inclusion of dental services as part of
appropriate medical management of HIV-infected individuals,
who have private insurance coverage. Such a recommendation
would enhance access to care and diminish provider
disincentives to render needed dental care services.

I would like to thank the Commission for the

opportunity to address this issue today.

 

 
 

 

Statement’ of Vincent C. Rogers, D:D.S.-, M.P.H.
for
The American Dental Association.

_ to

The President’s Commission on AIDS

 

January 14, 1988

 

 
 

 

Mr. ‘Chairman, ‘and’ distinguished members of the. Commission, . T. ant
‘Dr. vincent Cc. Rogers; Chairman’ of the Department aa Community
Dentistry at the Geargetown University ‘School of: Dentistry in
Washington, D.C. Formerly, I was Assistant Commissioner for
Clinical Services with the Baltimore ‘City Health Department in
Baltimore, Maryland. I am here today, however, to represent the
American Dental Association. and thank the Commission for :the.
opportunity and privilege to address ‘one of the most challenging
public “health concerns . of the 20th century, although, hopefully,

not of the 21st century. -

The catastrophic illness known as AIDS is commanding, unabated,
the attention of health care providers and the population-at-
large. Those of us in the health professions are all too
familiar -with -the monthly adjustments upward by the Centers for
Disease Control of mortality and morbidity figures for
individuals with AIDS and the projections for those seropositive
for the Human Immunodeficiency Virus. At present, as you are
aware, the CDC reports, as of December, 1987, twenty-eight
thousand deaths from AIDS with 20,000 new diagnoses in this same
year. The current projections estimate almost 270,000 cases to

occur by the year 1991.

Studies by the National Institutes of Health and the University
of California at San Francisco reveal that intraoral lesions are
among the first opportunistic infections that appear during and

after the prodromal period of HIV infection. In fact, 33% or

 

 
 

 

one-third of ‘patients . evidence: ‘oral’ lesiorig as the primary, oY
initial manifestation of. infection. Ninety-five peicent “pf
patients show some level’ of lymphadenopathy, or swelling, in the
head and neck regions. A study by Greenspan and others at the .
University of California has demonstrated that 100% of patients
; diagnosed - with one form of opportunistic infection, - ‘namely, hairy
Léukoplakia of ‘the tongue, eventuaily ‘develop full-blown “AIDS
within an average of 30 months. Further, for individuals with
AIDS, the frequent complications: of - common oral infections
leading to general discomfort and systemic: opportunistic disease
Make access to-dental care critical to their stabilization and

well-being.

Clearly, therefore, dentists and the dental profession have major
roles to play in the early diagnosis, treatment, counseling and
referral of the HIV-infected person as well as prevention in

high-risk populations.

Research also indicates that the AIDS virus can be isolated in
Saliva, in addition to blood and other body fluids. Since few
dental procedures can be rendered without contact with saliva,
biood and aerosol contamination during the course of treatment,
dentists are concerned about their level of risk of exposure in
treating persons with HIV infection. Many dentists have begun to
question their obligations, ethically and legally, to continue or

initiate dental care to persons in any of the high risk

 

 
 

 

UP LatKgeme” 4

categories: or’ with any’ stage ‘of ‘inv’ iHivSetion; maintaining ‘that
‘risk ‘of’ exposure “may: jeopardize ‘continuing ability to practice,
‘the health of auxiliary office personnel and the health of other
patients. Some members - of the profession recommend Ena referral
of HIV-infected individuals to special, ‘or dedicated, “pactiities
or to hospital-based programs is more “appropriate: because of
"perceived" inability © ‘to maintain infection control in ' the’
private | or traditional dental office. setting: oo |

These apprehensions and fears persist despite the preponderance -
of scientific and epidemiologic research ont of CDC and NIH that.
risk is minimal when recommended -infection control procedures are
followed, protecting both practitioners and patients. Of 1,200
dentists tested anonymously for the AIDS virus at the 1987 annual
session of the American Dental Association, no dentist tested

positive for the presence of the. AIDS virus. (ADA News, Vol. 18,

No. 24).

As the focus of today’s session is upon, access and treatment, it
is important for the American Dental Association to clarify for
the Commission and the dental profession as well, its position on
dental care for HIV-infected persons in order to assist in the
formulation of rational national policies, appropriate
recommendations and effective strategic responses for the country

to address this crisis.

 

 
 

 

4

. ee »
¢

The American Dental! Asséciatich wistiés~to. ‘stress: the coimitaient
of the’ profession to “fulei1 | ‘its obligations to care ‘for: all:
patients. The Association maintains | that HIV-infected persons .
may be safely treated in private dental office Settings, with

minimal risk to transmission of the virus to other patients and ’
dental “personnel'-when established; ‘effective, infection control
guidelines are ‘followed... Unless | a patient’s physical, medical’ or "
mental’ condition. compromises: the. ability of the dentist to care
“for the  patient:.: or treatment requirements jeopardize the.
patient’s best interests in the private office setting, referral
to other sources of care should not'be'‘necessary. The patient’s
best interests are’ served when he or she is allowed to continue

the relationship with his or her attending dentist - such is the

policy inherent in the ADA’s Code of Ethics for all patients.

¥ S o4 ‘
' , 4

The ADA would: support dental care ‘facilities (clinics or.
hospital-based programs) dedicated especially for HIV-infected
individuals if (1) the patient’s medical and ‘mental condition
complicated by ‘HIV-infection at any stage would preclude
treatment in the. traditional office setting, or'(2) -the indicated
dental care is beyond the expertise of the attending dentist, or
(3) if such clinics have been established to fill a deficiency in
access to care, such as economic hardship or no identified source
of dental care. Referrals’ to such clinics would then be in the
patient’s best interest. Inability to maintain -proper infection

control, however, is not a valid justification for referral.

 

 
 

5

_ Dentists should not abrogate. their proféss_ onal, ~ ethical - and’

‘legal obligations under the pretext! of deficiencies ain proven and -

established protocols for barrier techniques, sterilization: and

prevention of cross-contamination in the dental office.

1 e

‘The Association. further | supports initiatives’ to: develop - ae

national policy “on “HIV infection which can becom ' a basis ‘for

coordinated efforts by the. public and private sectors, te ‘educate

the general public. about. the ‘prevention of HIV “infection. in ‘all.

segments of the population. The oral health aspects of HIV

. infection and issues related to the practice of dentistry should

be included in ahy national policy and strategy to reduce and

prevent transmission.

There should be no question that HIV-infected individuals should
be treated with - compassion and dignity. . At stake in the
challenge of the AIDS epidemic is the status of dentistry as a
healing profession. For the dental profession to respond in such
a manner that “obligations to self-interest" override obligations
to patients would be the beginning of the erosion of professional
ethics and the trust that society has placed in the health
professions. This trust is given legal sanction through the
conferring of licenses to practice dentistry and moral sanction
through the conferring of elevated status which dental and
medical professionals enjoy in the community by reason of their

special knowledge, skills and expertise.

 

 
 

The dental profession hag responded in’ the past to challenges of
care for the handicapped, the elderly and the economically
disadvantaged, but the gravity and magnitude of the challenge
posed by HIV infection is mandating an examination that "goes

beyond professional codes" and -"ethical. analysis." Rather the

+ ”
4

health professions must retommit ‘themselves to a moral philosophy
of care and caring for persons. in need .of our knowledge, our
skills, expertise  and,. indeed; our compassion. The american
Dental Association believes it has the responsibility and
obligation. .."to serve the needs .of all patients...based upon
current [and emergent] scientific knowledge and accepted -legal,
moral and ethical imperatives." The Association’s present policy
is a dynamic one and is not static. It will be shaped in the
future by scientific research and information that will bring new
enlightenment on this public health challenge. In this way, the |
best interests of patients and the profession’s ability to

respond will be best served.

On behalf of The American Dental Association, I would like to

thank the Commission for allowing me to address these very

pressing issues facing the country.

 

 
eT

RECOMMENDATIONS’ *’°

1.. To the extent the U.S. has a tradition of appeal to the
President for executive intervention and guidance during
times of national emergency, that the Commission call upon
the President of the United States to address the American
Medical Association, the American Dental Association, the
American Public Health Association and other health ‘care
organizations to consolidate their professional expertise
and ethica) obligations to address the challenge of the AIDS
epidemic. for the country, drawing upon the American
traditions of ingenuity, resourcefulness, and compassion for

fellow citizens.

~

2.: To the :extent that health education and information is
essential for.effective professional and lay response to the

AIDS epidemic, the ADA would encourage a national initiative

 

to coordinate federal, state, and local efforts to educate
both the professions and the public to allay irrational
fears concerning risk of exposure for patients and

practitioners in dental settings.

3. To the extent' that single males comprise the majority of the
group at-risk to HIV infection but receive low priority in
the determination of medical indigence in State Medicaid

programs eligibility guidelines, that the federal government

 

 
 

 

: 8

advocate waivers at the state ‘level’ to’ broaden eligibility
for and scope of dental care services to foster early
diagnosis of oral manifestations of HIV infection, treatment
and prevention in this affected population.
!

To the extent that the Black and Hispanic populations in
this country are disproportionately at-risk to HIV infection
and least |likely to have adequate health insurance and
access to care, particularly dental care, that the federal
government support waivers in the 51 State and District of
Columbia Medicaid Programs to broaden eligibility for and
scope of dental care services under the guidelines of the
respective jurisdictions. Such expansion of eligibility and
services would foster access ‘to dental care for early
diagnosis, treatment of oral manifestations of HIV infection

and prevention within the affected populations.

|

‘To the extent that dental ‘care services are frequently

precluded from third-party insurance programs for services
rendered in out-patient and in-patient settings as a
consequence of complications and interventions, the ADA
would recommend inclusion of dental services as part of the
appropriate medical management of HIV-infected individuals
who have private insurance coverage. ‘Such a recommendation
would enhance access to dental care and diminish provider

disincentives to render needed dental care services.
| ’

|
|
|
|

 

 

 

 
1.

2.

 

 

‘- . ~ 4 ‘toe lo } ro
REFERENCES CONSULTED
: fu ~ ve

Mortality and Morbidity Weekly Report ‘(Decembér 1987),

Centers for Disease Control.” °

“Walters, L. (1986) Ethical ‘and ‘Legal Issues “in the

Prevention and Treatment” of Acquired’ Immune Deficiency
Syndrome. Paper “presented at a “ conférence én AIDS co-
‘sponsored by the International Genter for “Intérdisciplinary
Research on ‘Immunologic Disease, Georgetown University
School of Medicine and thé National Institute of Allergy and
Infectious Diseases, Washington, Dic. .

t Rot “

Geboy, M., Rogers, V. (1984) Factors affeéting Adherence to
A Hepatitis B Vaccine Récommandation. ‘Paper presented at
the 112th Annual “Meeting ‘of ‘the’ American Public Health
Association.

Principles of Médical Ethics " (1980) American Medical
Association, In: Beauchamp, “T., “Walters, “L. (1982)
Contemporary Issues in ° Bioethics, 2nd éd., Wadsworth,

-w - “

Belmont, CA. p. 122.

holy !

ADA’ Principles of Ethics and Code of’ Professional Conduct

' (1984) American Dental Association, Council on Bylaws and

Judicial Affairs, JADA 109(1): 81-83.

 

 
 

 

10.

11.

12.

Pollack, B: (2985) Risk Management in the Dental Office.
Dent Clin of N Am |
|

29(3).

|
McCullough,, L. (1982) Ethical Issues in Dentistry. In:
Clinical Dentistry, Harper and Row, Philadelphia.

|

|

Davis, D. (1984) The Significance of AIDS to Dentists and

Dental Practice. J of Pros Dent 52(5): 736-738.

!
Corbin, S.,, Bolden, A. et al (1986) The Control of
Transmissible Diseases in Dental Practice: A Position Paper
of the American Association of Public Health Dentistry. J
Pub H Dent 46(1): 13-22.

|
The American Dental Association, Council on _ Dental
Therapeutics (1985) Facts about AIDS for Dental

|
Professionals, pp. 1-6.

|
Dummett, C. (1986)') Bioethics and History: Neglecting

Essentials of Modern Dentistry. The Compendium of

| ,
Continuing Education VII: 3.

American Dental Association News 18(24), No Dentists Show

AIDS Signs in Screening, (December 21, 1987), p. 1, 8.
|

 

 
 

 

13.

14.

11
The American Dental Association Pélicy Statement on AIDS,

HIV Infection and the Practice of Dentistry, October 1987.

Pellegrino, E., Altruism, Self-Interest, and Medical Ethics

(Editorial), JAMA 258(14), October 9, 1987. pp. 1939-1940.

 

 
 

 

SPECIAL CARE FOR HEMOPHILIA
FAMILIES EXPOSED TO THE
HUMAN IMMUNODEFICIENCY VIRUS

TESTIMONY AND RECOMMENDATIONS
FOR CARE BASED ON:
SPECIAL NEEDS AND RESOURCES

PREPARED BY DR ROBERT L. JANCO FOR
THE PRESIDENTIAL COMMISSION ON AIDS
14 JANUARY 1988

 

 
 

 

Table of Contents
RAPID SUMMARY: SPECIAL ISSUES OF CARE a a
INTRODUCTION AND MAGNITUDE OF THE PROBLEM .....

SPECIAL ISSUES FOR HEMOPHILIA FAMILIES ..... .

UNIQUE MEDICAL CARE ISSUES FOR HEMOPHILIACS ... .
RECOMMENDATIONS AND JUSTIFICATION
1. Amend the Social Security Act see es ees

2. Enhance existing comprehensive hemophilia
cl inics es e * » e e e es s ea s e e e e e e

3. Psychological care and legal support services
4. Improved access to clinical drug trials ...

5. Enable access to more highly purified factor
concentrates .. - + « « «© © © «© © « © « «

Re ferences e e e es e e e e es e es s e a ® e e e . e e
Figures and Tables .... + +++ +e 2+ e© © © © © « ©

Glossary .. 2. «© «© © «© © © «© © © © © © © © © © © «

 

 
 

 

SUMMARY: SPECIAL ISSUES OF CARE FOR
HEMOPHILIA FAMILIES EXPOSED TO HIV

- MAGNITUDE OF THE PROBLEM
90% of hemophiliacs exposed to HIV
524 have progressed to AIDS
1200 to 2400 will develop AIDS
5 to 20% of spouses infected

SPECIAL ISSUES :
Psychological effect on hemophiliac
Complex effects on spouses & families
Fears of reprisal and exclusion

- UNIQUE MEDICAL ISSUES
Existing chronic, painful disease —
Risks of bleeding during procedures
Comprehensive network of care in place

- RECOMMENDATIONS
Shorten wait for disability $390,000
Enhance existing clinics 3,600,000
-Basic immune evaluation 750,000
-Family support services 5,500,000
Improved access drug trials 600,000
Enable coverage pure factor ?

1/14/88 Source: Robert L. Janco,MD

 
 

 

SPECIAL ISSUES OF CARE FOR HEMOPHILIACS
AND THEIR FAMILIES EXPOSED TO HIV

INTRODUCTION AND MAGNITUDE OF THE PROBLEM

While hemophiliacs represent 1.1% of the AIDS patients
reported to the Centers for Disease Control (CDC), they are a
unigue group with needs, problems, and special resources. As of
28 Dec the CDC has recorded 524 AIDS cases among people with
hemophilia or other congenital coagulation disorders. Forty of
these are under 13 years of age. The majority of these AIDS
cases have severe hemophilia A (factor VIII deficiency) while
the minority have either hemophilia B or other less common
disorders. While these numbers seem small compared to the 46,000
total number of AIDS cases, the proportion of men with hemophilia
exposed to HIV through their factor concentrates is frighteningly
high. From several serological surveys, we now know that 80 to
90% of severe hemophiliacs have been exposed to HIV (1). This
means that as many as 11,000 of the estimated 14,000 men with
hemophilia in this country may have been exposed and may be at
risk for developing opportunistic infections, malignancies,
dementia, or other, as yet unknown, disorders related to
infection with this virus. . The current number of reported AIDS
cases among hemophiliacs (524) as well as the relatively constant
number reported per quarter for the last seven quarters (Fig 1)

would suggest that the prevalence (number of cases/total number

 

 
 

 

at risk) of AIDS. among hemophiliacs is only 3.7%, even though 90%
are seropositive. At first glance, this suggests that the attack
rate for AIDS among men with hemophilia is much less than that
seen in other high-risk groups. However, a lag in reporting
cases exists. In fact, a recent survey of 6 major hemophilia
treatment centers by the CDC suggests that among severe
hemophiliacs, the true prevalence is closer to 15% (2).
Moreover, recent, data suggest that the true actuarial incidence
of AIDS may be 22% or higher, a figure closely approximating the
incidence among other high risk groups (3). Thus, we could
project that from 1200 to 2400 men with hemophilia: will develop
AIDS-related opportunistic infections, primarily Pneumocystis
carinii pneumonia, in the next several years unless- curative
therapy is developed.

Equally as disturbing are the data from sexual partners of
men with hemophilia. Current surveys report between 5 and 20% of
spouses of HIV-infected hemophiliacs have also been infected with
HIV (4). Several of these women have died of the disease even
when their HIv-infected partners have remained free of symptoms.
Worse yet, consecutive annual surveys suggest that the prevalence
of HIV infection. among these women is increasing dramatically
(4). Thus we could also project that as many as 500- sexual
partners of hemophiliacs may develop AIDS. This figure does not
even consider maternal-fetal transmission of the virus in this
risk-group, a tragedy which has already occurred.

Overall, the worst case estimate would suggest that close to

 

 
 

 

3,000 men, women, and children may develop AIDS due to HIV
contamination of factor concentrates used by hemophiliacs to
treat their bleeding disorder. Recalling that hemophiliacs have
used these contaminated concentrates on the advice of the medical
community (before AIDS or HIV were known) to free themselves from
constant hospital visits, this tragedy seems a cruel irony.
Despite these grim figures, hope exists still. Exclusion of
high-risk donors and screening of donor plasma since 1985 has
decreased the risk of HIV contamination of factor concentrates.
Newer heat-treated factor concentrates appear to be relatively
free of HIV which is inactivated by heat. Surveys of men treated
solely with these newer products suggest that HIV seroconversion
is extremely unlikely. — And now there are even newer, more
highly purified factor concentrates which in preliminary trials
seem to alter the immune system less, hopefully allowing some

immune restoration in the HIV-positive hemophiliac.
SPECIAL ISSUES FOR HEMOPHILIA FAMILIES

Given the magnitude of the AIDS problem in the hemophilia
community, the nature of hemophilia, and the manner of
transmission of HIV in hemophiliacs (a complication of medically-
advised treatment), I and many of my colleagues involved in the
care of hemophilia families believe that there are special issues
of care for HIV-infected hemophiliacs and their families. First,

hemophiliacs are men with a chronic, Gebilitating disorder that

5

 

 
 

 

causes frequent, painful joint bleedS. Since childhood they have
been reminded that they are "free bleeders" who can't participate
in sports, can't climb trees or ride bikes. Days lost from
school affect their level of education, and certain jobs are out
of the question because they have crippled joints.
Discrimination is not unusual. Frequent visits to a clinic or
hospital remind them that they have a potentially fatal disorder.
Yet they survive with courage and strength. Then, all of a
sudden, they're told about AIDS, a fatal complication of their
treatment. Psychologically, this is devastating. Its like a
relapse of cancer in someone who has struggled through years of
drug therapy. The psychological stress to then is enormous.

The family of the hemophiliac is also stressed. Since the
median age of hemophiliacs is approximately 20 years, most are
sexually active and many are married. The shock of being told
that he is seropositive for HIV has a ripple effect on a
hemophiliac since he must also face the grim fact that he may
have infected his wife with a fatal illness. His wife too must
confront her own mortality, and her: ambivalence toward her
hemophilic husband who may have infected her by sexual
transmission of the virus. How could such a couple ever achieve
or sustain meaningful intimacy, free of guilt or hostility?

For siblings of HIV-positive boys with hemophilia,
relationships and issues are just as complex. I have talked with
families in which sisters of. boys with hemophilia have distanced

themselves both physically and emotionally from their brothers.

 

 
 

 

And I've worried about the healthy hemophilic boy watching his
affected brother die of AIDS, wondering when and how it will
strike hin. And how does the HIV-positive adolescent with
hemophilia, knowing he has a potentially fatal sexually-
transmittable disease, and hearing that he should never have
children, even begin to establish healthy relationships with
young women? Such psychological issues seem to me to represent
an area of special need for families with hemophilia, which is
after all a genetically transmitted disease, frequently affecting
the sons, brothers, father, and uncles of women who are carriers.
For women like these, the emotional burden must be enormous.

To these forbidding psychological stresses, one must add the
worry about discrimination and exclusion of HIV-seropositive
hemophiliacs from school, the workplace, and society in general.
Recent public demonstrations and protests in Florida, Tennessee,
and Indiana highlight the real threats to the physical safety of
hemophilic boys attending school when their HIV status became
public knowledge. Parents of hemophilic boys have confided in me
that they have nightmares in which they face violent mobs holding
signs calling them "Killers" and threatening their children's
lives. For these families the issue of confidentiality and anti-
discrimination protection is more than a bill before Congress or
a legal brief. It is both real and palpable.

When one adds the issue of medical care and its cost’ to
these already complex psychological issues, the special needs and

problems of the hemophiliac are further highlighted. Costs for

 
 

 

r *!

just hemophilia care alone may be more than $9,700 per year for
their entire lives (5). Many older a have already exhausted
their lifetime ceiling for health care benefits. Now to these
already significant health care costs, we must add the cost of
care for HIV-related infections, whether they occur in the
hospital or at home. Although both federally-funded and state-
funded programs exist to provide basic preventive health care
services for most people with hemophilia, in the main these
programs provide little or no coverage for AIDS-related health
care problems. These additional costs must be born either out-
of-pocket or by other third-party insurers, assuming the
hemophiliac has adequate health insurance and has not already
exceeded his lifetime limit. For the under-insured or uninsured,
only uncompensated care prevents financial ruin. I remember a
nurse with hemophilia at my institution who after his first bout
of pneumonia was severely debilitated and unable to work.
Unfortunately, his disability income would not take effect for 6
months. Lacking cash, he and his wife, who just had a baby, were
unable to pay their health insurance premiums. His medical bills
for intensive care and factor replacement were over $50,000.
Only the charity of the local Hemophilia Foundation Chapter saved
this family from financial ruin. He died just after he became
eligible for disability income.

When he enters a terminal phase of.AIDS, the hemophiliac may
or may not have family to care for him. There are no nursing

homes for hin. In fact, many institutions’ prefer to exclude

 

 

 
 

 

|
hemophiliacs because they have a bleeding disorder, a chronic
illness with which nursing home or hospice personnel have little
or no experience. Again, I am reminded of a relatively young man
with hemophilia who has severe liver disease, has survived a
heart attack and coronary. bypass surgery, and now is progressing
from ARC to AIDS. He lives with his aunt but he thinks she will
throw him out because he is HIV positive. He has no other family
and his disability prevents him from keeping a job. Where will

he stay when he becomes more 411?
!
[. UNIQUE MEDICAL CARE ISSUES FOR HEMOPHILIACS

| Hemophiliacs don't bleed openly or more often or more
profusely than other people, but they do have recurrent, painful
bleeds into the joints and soft-tissues surrounding them and they
will bleed longer after trauma or surgery. Beginning in early
childhood, the hemophiliac faces bleeding episodes that require
treatment with intravenous factor concentrates. While most of
the treatments for joint bleeds can be done at home by his
parents, the boy with hemophilia must still visit emergency wards
land hospital clinics when more serious bleeds occur.
Hospitalization, though less common now, is occasionally
necessary. Thus, the hemophiliac becomes very familiar with the
health care system. Most visit their hemophilia clinic or
doctor's office two or more times a year.

Complications of the disease and its treatment include

 

 

 
 

 

Be

progressive joint destruction leading to chronic, painful
arthritis with significant limitation of motion in joints and
progressive muscle weakness. For some, getting in and out of a
car or climbing stairs is a major endeavor. Liver disease occurs
from exposure to hepatitis viruses present in the factor
concentrates. Some become addicted to narcotic drugs prescribed
for their severely painful joints.

When caring for hemophiliacs exposed to HIV, physicians face
additional medical problems not seen in other people. First,
should invasive procedures or surgery become necessary to
diagnose or treat an HIV-related illness, the hemophiliac must be
given factor concentrates to prevent serious hemorrhage.
Additional observation is necessary to ensure that adequate
healing has occurred. Hospitalizations may be longer. Second,
most men with hemophilia have chronic liver disease due to
exposure to hepatitis viruses in their factor concentrates. In

these men, surgery and anesthesia carry greater risks of

 

complication. Third, approximately 12% of hemophiliacs develop
an inhibitor (antibody) against their missing factor, making the
infusion of factor concentrates ineffective. For these men,
surgery or invasive procedures carry grave risks of fatal
hemorrhage. Fourth, many simple things like intramuscular shots
or oral aspirin are potentially dangerous in people with
hemophilia. Fifth, the low platelet counts seen in some AIDS
patients are an even greater threat to the hemophiliac. These

problems make the care of the hemophiliac with AIDS even more

10
 

 

complex and more costly.

Realizing the costly nature of hemophilia care long before
AIDS existed, Congress authorized the creation of federally-
funded Comprehensive Hemophilia Diagnostic and Treatment Centers
in 1976. Now serving close to 10,000 persons with hemophilia,
these federally-funded and additional state-funded clinics
provide multi-disciplinary services, including preventive health
care, physical therapy, psychosocial support, dental evaluations,
financial, vocational and genetic counseling, as well as
orthopedic care. This team approach to preventive medicine for
this chronic disease has been tremendously successful in reducing
costs of care, limiting disability, decreasing unemployment, and
enabling the hemophiliac to treat himself at home. Analyses by
the National Hemophilia Foundation (NHF) have shown that these
clinics have saved the federal and state governments as well as
commercial insurers hundreds of millions of dollars by reducing
hospitalizations, and decreasing clinic or emergency ward visits
for the majority of people with hemophilia (Table 1). These
clinics now more than ever represent a major resource with which
to implement the additional services and support required by the
AIDS epidemic among hemophiliacs. Moreover, this network of
clinics directed by experienced physicians who have abundant
expertise in the design and conduct of clinical trials serves as
an existing structure and a useful model for implementing
research in the transmission, prevention, care and cure of AIDS.

For many years, these clinic personnel and their patients with

11

 

 
 

 

\

|

hemophilia have participated in a variety of research activities
related to hemophilia treatment and complications. Now seems the
time to call in their skills once more. The network, structure,
and people are in place. |

In summary, the special needs of the hemophilia community
‘can be considered from three broad areas. First, the basic issue
of some form of financial relief from the additional health care
” costs related to HIV infection needs attention. Current help is
insufficient. Second, we must enhance the quality of care for
henophilides within the current structure of hemophilia treatment
centers, paying special attention to providing hemophiliacs equal
and speedy access to new drug trials, studies of immune function,
and to provision of pure factor concentrates which hold promise
of permitting some restoration of immune function in HIV positive
hemophiliacs. _ The existing level of state and federal funding
for these ‘services and for ‘pure concentrates is strikingly
inadequate. ‘Last, we must provide ‘an effective, long-term
network of ‘counseling - and support services that meet the
psychological needs of the entire hemophilia family. The existing
comprehensive clinics will be the most cost-effective approach to

| %

meet these diverse needs.

 

RECOMMENDATIONS AND JUSTIFICATION
: —
1. Amend the Social Security Act to shorten the waiting

period for Social Security Disability (SSD) for AIDS patients

12

 

 
 

 

from six months to one month.

This recommendation is based on the hemophilia population
who are being affected. They are young adults with families.
For the most part, they have not had time to establish a large
cash reserve but are working to support their families. Their
wives may be employed but most young families need two incomes to
provide an adequate standard of living... In a survey of 175
families with hemophilia in Tennessee in 1985, we found the
average family income to be $19,400 (6).

Because most persons with AIDS survive less than two years
they must begin receiving their SSD benefits-sooner. Having the
money from SSD earlier and _any. disability insurance their
employer pays, would allow them to pay health insurance premiums
and keep their health insurance benefits. This would not only
provide an income for the family but also keep them from becoming
a burden on public funds such as AFDC and Medicaid. In
Tennessee, an adult male can only receive Medicaid if he has
been approved for Supplemental Security Income. He would not be
able to receive this if he “or his wife had any significant
savings, had any equity in a home, or if she was working. It is
also important that with the expanded definition of AIDS, we
consider that syndromes of chronic wasting or dementia are just
as disabling as severe opportunistic infections.

The cost of starting SSD five months sooner is estimated at
$390,400. This cost estimate assumes that the hemophiliac has

health insurance and that the incidence of hemophiliacs

13

 

 
 

 

developing AIDS and needing assistance is 160 people per year and
an estimated average SS grant being 488.00 per month. Thus, 160
x 5 = 800 months x 488.00 = $390,400.

This can be viewed as an overall savings if you use the
average annual inpatient cost of medical care for one person with
AIDS aS approximately $20,320 (7), realizing that data for AIDS
care costs for hemophiliacs are unavailable. Nevertheless, using
this figure, the medical cost per month per AIDS patient is thus
$1,693, over three times the cost of an average monthly SSD
payment. Viewed in another way, the medical care costs for 160
AIDS patients with hemophilia per year would be $3.3 millions or
more of which the federal government would expect to pay 50% or
more through Medicaid after the family becomes impoverished (8).
Thus, changing the Social Security Law would potentially save the
federal government over $1.5 million in health care costs. Since
these estimates do not even consider the additional costs for
longer hospital stays and inpatient factor concentrates for the
AIDS patient with hemophilia, the potential cost savings to the
federal government are even greater.

2. Enhance existing comprehensive hemophilia treatment
centers.

Outside of research grants, little funding exists to conduct
a basic evaluation of the immune system in a man with hemophilia.
Now that simple tests of the immune system have been found to be
useful in predicting progression to AIDS, these tests are an

essential part of the periodic health inventory of the

14

 

 
 

 

hemophiliac. Moreover, entry into ‘AIDS drug trials depends on
preliminary evaluation of the immune system. Thus, a mechanism
must be designed to accomplish periodic evaluation of the
hemophiliac's immune system, even if he is not participating in
drug trials. Through the existing network of Comprehensive
Hemophilia Treatment Centers (CHTC's), such a mechanism may be
implemented. For example, at my institution, we were able to
make special arrangements for counting limited lymphocyte
subsets, a part of an immune evaluation, for hemophiliacs at a
cost of $125. Assuming such special arrangements can be made at
other institutions and estimating that approximately 6,000 such
tests need to be performed annually, one can calculate that a
very limited evaluation of immune function might be accomplished
for $750,000 per year. Of course more thorough and more
complicated evaluations or tests will increase this estimate
considerably; however, in many cases these additional tests could
be funded by clinical research projects and would not affect this
estimate.

Additional enhancements to CHTC's besides the availability
of basic immune studies for all hemophiliacs, should include
improved funding to cover the additional tasks of coordinating
HIV testing and counseling for both the hemophiliac and his
partner, supporting regional and national HIV and AIDS clinical
and laboratory research projects, accomplishing more frequent
clinical examinations of the HIV positive hemophiliac and his

spouse, and conducting formal and informal educational programs

15

 

 
 

 

for hemophilia families, school systens, employers, and other
interested persons or groups. Funding of CHTC's for additional
personnel to accomplish these tasks would cost $3.6 millions
based upon 220 CHTC's x $25,000 annual Salary/health care worker
x 66% effort (funding from other sources for non-hemophilia
activities would account for the remaining 34%) = $3.6 millions.

3. Psychological care and legal support services.

While our comprehensive clinic network has made a concerted
effort to meet the needs of people with hemophilia, we feel that
there are other legal, financial, and psychological issues not
being addressed effectively which are a direct result of the HIV
crisis. These issues include discrimination in the work place
and schools, confidentiality of testing for HIV, and support
services for family members, including spouses, children, parents
and siblings.

Parents, especially mothers, who are carriers of the
disease, feel guilty because their sons have hemophilia. The
AIDS issue has magnified these feelings. Moreover, some mothers
may be at risk to lose all their sons. They and their families
need help in coping with this tragedy. Wives need help in coping
with their husbands HIV status which means using condoms, perhaps
for the first time in their married life. They must face the
reality that their husband may die and leave them to care for
small children alone, and they must understand their husband's
depression, fear,, and anger about being positive for the virus.

To meet these demanding and complex psychosocial needs, we

16

 

 
 

 

z
recommend an experienced social worker funded to work primarily

with hemophilia families at every Comprehensive Hemophilia
Treatment Center. This would cost $5.5 million dollars based
upon 220 hemophilia treatment centers, and an average salary of
$25,000 for an experienced social worker/counselor.

4. Improved access to clinical drug trials.

Hemophiliacs are a compliant group of individuals familiar
to clinical trials. For the most part, they have ready access to
clinics skilled in the conduct of clinical research. They
represent an ideal study population for anti-viral drug trials.
In some current trials, they are excluded because they are not
homosexuals. Unlike other high-risk groups, they are not
concentrated in convenient geographic areas so they are expected
to travel to regional treatment evaluation units where they are
complete strangers. We must make the research effort come to
them. To the credit of the NIH, NIAID, and others involved in
the conduct of drug trials through the AIDS Treatment Evaluation
Units (ATEU's), this is fast becoming a reality. We must
encourage further collaboration. From lessons learned from
cooperative group studies of children with cancer, we know that
complicated clinical research can be accomplished in many medical
centers. In the case of hemophilia care, many centers have
collaborated in trials that rival in complexity some of ‘che
current AIDS drug trials. Thus, I propose that additional
funding be made available to further cooperative drug trials

among HIV positive hemophiliacs to be accomplished through

17

 

 
 

 

4

From prior experience

existing hemophisia treatment centers.

with clinical drug trial costs and from an estimate of 600
participants, one can calculate a ‘start-up cost of $600,000 to
begin trials in the HIV positive hemophilia population, not
considering the cost of the drugs themselves.

5. Enabling ae to more highly purified factor
concentrates. current factor concentrates prepared from large
pools of plasma are relatively impure, containing large amounts
of foreign and degraded proteins in addition to the clotting
factor. Evidence suggests that these extraneous proteins may
adversely affect the immune system of hemophiliacs, perhaps
increasing their risk of progressing to AIDS. Newer processes
allow manufacture of more highly purified factor concentrates.
In preliminary trials, there has been a suggestion that these
newer concentrates may allow some HIV positive hemophiliacs to
regain immune function, but the data are very preliminary. At
the same time, these newer products appear to be less likely to
transmit a certain form of hepatitis (non-A, non-B).
Unfortunately, the newer products’ are approximately eight-fold
more costly so that widespread adoption, of these products would
disrupt state and federally-funded hemophilia “programs unless
commercial insurers contribute their fair share to reimbursement.
Since insurers are likely to balk at’ such a dramatic increase in
their costs, state and federal insurance regulatory agencies must
assist hemophiliacs in being reimbursed for these products by

their insurers. I propose that a panel of nationally-recognized

18 -

 

 
 

 

experts in immunology, hemophilia care,.and transfusion medicine
meet under the auspices ,of the CDC, National. Heart, Lung and
Blood Institute of the NIH, _and._ the Medical and Scientific
Advisory Committee of the National Hemophilia Foundation to make
initial and periodic recommendations for the use of these newer,
more pure products (in fact such .a panel met in, Atlanta at the
cbc on Jan 11, 1988 and their recommendations are forthcoming) .
Such recommendations could be used by practicing hematologists to
justify prescribing these more expensive..concentrates, thus
requiring third-party insurers-to reimburse the cost of the
product when it is indicated. . It seems only fair that the
hemophiliac who was exposed to HIV through contaminated factor
should be among the first to receive, the benefits, of pure, factor.

< |
| «
»

Respectfully submitted,

of

Robert L. Janco, M.D.
Assistant Professor of Pediatrics and
Director, Comprehensive Hemophilia Clinic ,
Vanderbilt University School of Medicine
Nashville, TN 37237 Lo
(615) 322-3891

  

19

 

 
 

 

References

Hilgartner M. Aids and hemophilia. New Engl J Med 1987;
317:31153-4.

Stehr-Green J. Centers for Disease Control (Personal
communication).

Eyster ME and Goedert JJ. The prevalence and predictive
value of HIV antigen in antibody positive hemophiliacs.
Blood 1987; 70(suppl): 120a(abstract) .

Eyster ME and Goedert JJ. Prevalence of HIV infections in
sexual partners of hemophiliacs. Blood 1987; 70(suppl):
120a(abstract).

National Hemophilia Foundation, 6 Jan 88.

Janco RL and the Tennessee Hemophilia Survey Group,
unpublished data.

Andrulis DP, Beers VS, Bentley JD and Gage LS. The provision

and financing of medical care for AIDS patients in US public
and private teaching hospitals. JAMA 1987: 258:1343-6.

20

 
 

 

U.S. HEMOPHILIA-ASSOCIATED AIDS CASES
BY QUARTER OF DIAGNOSIS

Number of Cases

 

60

 

50

ZZ, «“

 

40

Zoi
oils
LZZZZZZLLLZZZZZZELLL
ZiT

ZED

ZZ
Zinn

 

30

|

| Ber

ZZ

3

CLL

 

20

ZZ.
LLL.
LLL

LL

y AM AN
1234123412394123412034 1

| ge | 88 | g4 | 85 | 86 | 8B

 

10
0

Quarter

Fig 1

1/14/88 Source: CDC

21

 

 
 

 

Table 1

COST DATA FROM COMPREHENSIVE HEMOPHILIA
CENTERS AND THEIR AFFILIATES

Outcome Date Before (1975) fter 85
No. patients seen 2,112 7,247
No. on home care 514 2,517

Average days/year
in hospital | 9.4 1.6
Percent with third
party coverage 74 93

Overall care cost/
patient/year . $31,600* $8,127 -

1/14/88 Source: National Hemophilia Foundation
*In 1985 dollars

 

 
 

 

Glossary

Comprehensive Hemophilia Treatment Centers are a loosely-aligned
network of regional centers providing highly-specialized
preventive health care measures for the hemophiliac, including
general health care, physical therapy, orthopedic and surgical
consultation, dental evaluation and care, psychosocial support,
financial advice and assistance, genetic counseling, and recently
counseling about HIV exposure. Funded by federal and/or state
sources, these Centers have served as a model for delivery of
health care resources to individuals with chronic disease and
have demonstrated a significant net cost savings to taxpayers and
private insurance carriers.

Factor concentrates are derived from very large pools of plasma
obtained from paid, commercial donors. Following a complicated
process of partial purification, heat-treating to kill HIV, and
freeze-drying for storage, the concentrates can be reconstituted
with sterile water and infused into a hemophiliac's vein.
Historically, the concentrates have been responsible for the
transmission of hepatitis B, non-A non-B hepatitis,
cytomegalovirus, and now AIDS. Newer yet more costly methods of
manufacture promise safer products with limited availability.
Hemophilia - An inherited deficiency of a plasma protein
necessary for normal blood clotting to occur. Since the disease
is transmitted by a mutant gene on the x-chromosome, almost all

hemophiliacs are men. They sustain frequent bleeds in and around

23

 

 
 

 

the joints, causing severe and painful “crippling. - It is
estimated that there are close to 20,000 hemophiliacs in the U.S.
alone. Treatments consist of infusions of concentrated factor
prepared from large pools of plasma from paid donors.

Hemophilia A (factor VIII deficiency) is the most common type of
hemophilia seen in about 80% of hemophiliacs. Most men with this
form of hemophilia have less than 1% of the normal level of
factor VIII and thus have severe form of the disease. |
Hemophilia B (factor IX deficiency or Christmas disease) is seed!
in about 20% of men with hemophilia. Symptoms are the cane /as
for men with hemophilia A.

Incidence means the number of new cases per year. Among
hemophiliacs the incidence of AIDS is approximately 1 to 2% der
year based on 160 cases/year among an estimated 11,000 at risk.
Prevalence means the number of people currently affected by a
disease compared to the number of people at risk. The current
prevalence for _ AIDS among hemophiliacs is from 2.5 to 6%
depending on how many are included in the denominator (number at

risk). \

| 24

 

 
 

 

PAGE 4453

suspected inlusion in high risk groups, an unconfirmed HIV
ELISA assay or even a negative assay under the guise, where
there is smoke, there is fire.

Conversely, surgeons, for instance, correctly claim
that they have the right to know who is HIV-positive and who
is not and that to treat everyone as HIV-positive with
resultant safety precautions increases the risk of surgery to
non-infected patients by increasing time on the operating
table and decreasing the manual dexterity resultant from
double-gloving, eve goggl& face shields, et cetera.

Both sides of the debate are correct. There is,
however, a solution which I urge you to recommend to the
President and this forms my third recommendation to you.
Adopt model legislation -- and I know there is some pending at
the federal level and is held up, but, nevertheless, adopt
model legislation at the federal level, which protects the
rights of all #*t citizens, regardless of their AIDS-antibody
status. I would suggest that the following elements be
included ~- and I don’t mean this to be all inclusive.

One: The willful breaking of patient HIV status
confidentiality py fnstitution or individual be subject to a
meaningful monetary fine and liable in tort action.

Two: Discrimination in employment and housing be
expressly forbidden.

Three: HIV-antibody status in medical records be

 

 
 

 

PAGE 444

restricted from the insurance industry, regardless of an
applicant’s signed or verbal agreement to record access.

The insurance industry should be required to perform
confirmatory Western Blots or any other equally confirmatory
test on any ELISA positive screens it elects to conduct on
applicants. The industry should be expressly forbidden from
the denial of insurance based on an assumption of membership
in a high risk group due to area of residence or employment.

Thank you for your consideration of my

| '
recommendations.

 

 
 

 

RECOMMENDATIONS TO THE PRESIDENTIAL COMMISSION ON THE
HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

Madam Chairman of the Care Hearings, Ladies and Gentlemen of the
Commission, | have been asked to make specific recommendations to you
concerning ways and means of improving health care from the prospective of the
natural history of HIV infection and possible means of retarding the natural

progression of pathogenesis induced by HIV.

Exposure to infectious HIV can result in a variety of clinical sequelae as
illustrated in Figure 1. There may be no evidence of infection following exposure
yet some patients demonstrate explosive development of AIDS and death within a
few months of probable initial exposure. More commonly, there is a progression of
symptomatology trom a Lymphadenopathy Associated Syndrome (LAS) through |
AIDS Related Complex (ARC) to frank AIDS and death with or without an associated
AIDS Dementia Complex (ADC). The factors which may influence HIV-induced
disease progression include the immune status of the individual at the time of
exposure, the number of infectious virus particles gaining access to target cells at
the time of exposure (1. - dose), route of exposure, co-factors such as other
infectious viruses present at the time of exposure or acquired subsequent to
exposure, and the specific genomic sequence of the highly mutable HIV to which
the individual ts exposed or subsequently exposed with a resultant diversity of HIV

genetic forms.

Massive efforts are being made by both the Federal Government and the
Ethical Pharmaceutical industry to find effective methods of HIV intervention. The

highly mutable nature of HIV and the recent discovery of an HIV-infection

 

 
 

enhancing antibody in 50% of HIV seropositive patients will make vaccine

development the most formidable task ever faced by vaccine developers.

A brighter note can be found, however, in the development of anti-viral
chemotherapeutic agents. A single FDA approved chemotherapeutic agent has
emerged, AZT or Zidovudine, which lowers mortality but at high cost in morbidity
due to its inherent toxicity to the bone marrow. Although there are other
promising drugs with significantly less toxicity than AZT currently in clinical testing
which may prove efficacious singly and/or in combination with sub-toxic levels of
AZT, they remain unavailable at this time to the individual infected with AAV.
Nevertheless, there are prudent, common sense recommendations that can be made
to individuals who have antibody evidence of HIV infection. These include
disengagement of high risk activities, avoidance of unnecessary exposure to non-
HIV infectious agents, the maintenance of good nutrition, and the establishment of
a good rapport with a primary care physician in order to facilitate a rapid response’

at the first signs of infectious disease of any type.

My first recommendation to you is to be highly cautious of indorsing folklore
medicine or practice that is not verified by research or is generally accepted as
good health practice. As a corollary to this recommendation, | would suggest that
you consider whether model legislation is needed for enactment by the individual
states to strengthen their current statutes dealing with the sale of worthless

nostrums.

My second recommendation to you concerns health care workers and
laboratory workers at risk of disease through accidental! exposure to HIV. To my
knowledge no health care institution has established guidelines designed to

respond immediately to an accidental exposure. | would urge the development of

model guidelines which would be reviewed on a continuing basis by the Public

 

 
PN

Health Service so that any advances in anti-HIV research can be timely

incorporated.

| would like to turn your attention to a different but related issue. In any other
infectious disease process, ali individuals at risk would desire to know whether they
had been exposed. Nevertheless, because of the public hysteria and social stigma
attached to AIDS, there is a reluctance, especially by some members of high risk
groups, to undergo AIDS-antibody testing and a frontal assault on the concept of
» routine testing due to the fears of the societal response to those found to harbor
the virus. These fears, unfortunately, are well founded. All physicians who
routinely care for AIDS patients know examples of loss of employment, housing,
and insurance by individuals infected with HIV. Some insurance companies may
deny insurance on the basis of suspected inclusion tn high risk groups, an
unconfirmed HIV ELISA assay, or even a negative assay (i.e. where there is smoke
there is fire). Conversely, surgeons correctly claim that they have the right to know’
who is HIV-positive and who is not and that to treat everyone as HIV-positive with
resultant safety precautions increases the risk of surgery to non-infected patients by

increasing time on the operating table and decreasing the manual dexterity

 

resultant from double-gloving, eye goggles and/or face shields. Both sides of the
debate are correct. There is, however, a solution which | urge you to recommend to
the President and this forms my third recommendation to you. Adopt model
legislation at the Federal level which protects the rights of all citizens regardless of
their AlDS-antibody status. | would suggest that the following elements be

included:

1) The willful breaking of patient HIV status confidentiality by an
institution or individual be subject to a meaningful monetary fine and

liable in tort action.

 

 
 

 

2) Discrimination in employment and housing be expressly forbidden.

3)  HlV-antibody status in Medical Records be restricted from the insurance

industry regardless of an applicant's signed or verbal agreement to

record access.

The insurance industry should be required to perform confirmatory Western
Blots on any ELISA positive HIV screens it elects to conduct on applicants. The
industry should be expressly forbidden from the denial of insurance based on an
assumption of membership in a high risk group due to area of residence or

employment.

Thank you for your consideration of my recommendations.

 

William M. Mitchell, M.D., Ph.D.
Professor of Pathology
Vanderbilt University
Nashville, Tennessee 37232
(615) 322-2102

 

 

 
 

 

TESTIMONY OF VIRGINIA M. JACKSON, C.N.M.

BEFORE THE PRESIDENTIAL COMMISION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

JANUARY 14, £988 — Lo . i

> Gdod mornings, ladies and gentlemen. I would like tea thank the Com

mission for this opportunity to address it.
I am a certified nurse-midwife on the staff of North Central Bronx

Hospital in New York City, where the entire cbstetrical service is operated by
midwives. NCB is a city hospital. Mest of. our patients are poor or working
class. We manage 5,000 deliveries a year. while maintaining the lowest
maternal and child morbidity and mortality rates of any city hospital. and a
cesarean section rate of only 128%. We do not know how many of cur clients
would be faund pasitive for’ HIV. We dao know that appronxamately half of aur
clients have had petential-for exposure to the virus through IV drug use. sex-
ual activity or blood transfusion. In accordance with CDC recommendations of
August. 1987. all clients stating possibility of exposure are ccunselled
regarding testing. possible effects on the fetus. and prevention.

I offer the following recommendations fer care of HIV seropositive
women with the understanding that I must consider all the wamen for whom I

care HIV positive.

1. Reduce the Cesarean secticn rate. The rate of operative delivery
in the United States in embarressingly high. One in five births is a cesarean
with many hospitals reporting as many as cone in three. A cesarean delivery
exposes the women tc a greatly increased rish of infection--as high as 80% of
all cesarean deliveries result an significant maternal morbidity. In a women

who already is ammuncsuppressed,. such an infection could also carry risk af

 

 
 

 

mortality. Moreover «an operative delivery “al¢o'“increases the risk of maternal
hemmerrhages by ag much as 30% greater than with normal delivery. A large
hemmarrhage may necessitate the administration of blood or blood products.
Current Screening does net guarentee the freedom cf blood products from HIV.
Every effort should be made to prevent the spread of this virus, including
protecting the woman from excessive blatd loss.

It is important to recognize that the greatest single factor con-
tributing to the high rate of cesarean sections is the repeat cesarean. Frena-
tally. women should be encouraged tc prepare for a vaginal birth after
cesarean (VBAC). Praviders of prenatal care should have accurate information
and a positive attitude about such preparation. Special VEAC classes have
shown great SUCCESS. In haspitals efforst should be directed taward develap-
ment of greater skill in macagement of labor tae avoid unnecessary primary and
repeat cesarean sections. with institutianal review af all operative
deliveries with assessment of need. Providers should be held accountable for
the1r clinical judgements.

The cost cf such an effort in previding staff with information and
counselling skills would be more than offset by the reduction in cost of fewer
operations. Lees material. personnel. time in hospital. medications are in-
Vieved. For the fetus, there are fewer admissions to the neonatal intensive

care unit far 1atregenic prematurity. (1,2)

&. Stop the use of routine prophylactic episiotomy. The incision of
the perineal body at the time of delivery is the mest frequently performed
surgery on women under the age of 40. Again. such surgery increases the risk
of anfection in the immunccampramised woman.Episictomy has ne proven benefits.
On the contrary. there 15 considerable evidence of its adverse effect.

\
{

 
 

JT

An additional benefit of decreased use cf episicatomy 16 the remaval af
ene source of infectien of the previder. During repair ef the incisicn the
provider. may, inadvertantly stick herself with the suturing needle. Studies
have shown the infrequency cf the need for suturing in the absence of
episictamy.

Again, the cost of training previders in techniques tc prevent tearing
of the perineal tissue balance the cavings incurred with less use of materiel

and medications.3

3. Re-evaluate the recommendation to advise against breastfeeding.

The benfits of breastfeeding are well known. Special efforts and pragrams.
government and private. have been developed during the past five years to en-
courage the practice cf breastfeeding among women in this population. If we
are ta follow the CDC recommendations we would find curselves unable to
counsel any of our clients ta breastfeed their infants.

I am very concerned about the basis for this recommendation. AIDS
transmission via breast milk was assumed possible because HIV has been fould
in some samples of breast milt from HIV pasitive mothers. Support for the ap-
posite contention cames from the Caribbean where a large population af sera-
positive mothers breastfeed their serc-negative infants. This practice did
net result in an increase in sero-positive children. The three cases of in-
fants who apparently became infected via breast milk were from mothers who had
became infected from blood transfusion.

I feel that extensive further study and testing are needed befere such
a recommendation can be made. It is unusual ta balance untnown risk wath
known benefits and decide in favor af the unknown. We should also consider
the implications for these countries far which there are no readily available.

safe alternatives to breastfeeding. A study examining the benefits of breast-

 

 
 

 

feeding sere-positive infants may yield findings supporting the protective na-
ture of breast milk even in this situation. Historically. the recommendation
to avoid breastfeeding the case of Hepititis B transmissicn was eventually
reversed. (4.5

The cast of such a study cr studies would be several hundred thousand

dollars. A study population may be quite difficult to gather. Informed can-

-~— “- ~- —~h--— -—- =

sent. confidentiallity and long term follow-up represent the obvious problems

mn such an undertaking.

|
| -
4. Testing!for the presence of HIV makes sense only in the context of
|
prenatal care. One; third af mothers now get insufficient pregnancy care. An-

|
nially.662.0900 women da nat began care until the second trimester af

Pregnancy? £07,000 da not start untii the third trimester cor get no care at

all. Furthermore. let us lock at whe 16 not receiving adequate care: the per~

centage getting insufficient care is highest among the

 

i

unmarried (S8%).teenagers(S64),the least-educated(53%) .Giack

’ |
wamen(S1it) Hispanic women(47%). and the poor(47%) You will nate the cross-
over between thease at rask for HIV positive status and those receiving less

than sufficient prenatal care. Gut-reach programs are very much needed. with

|
a greater emphasie/on community-based centers.

This 1s net a totally new approach toe care provision. however. the

|
funding of new centers would be costly. Indeed. a committment to continuity
|

of care. so valuable in decreasing adverse cutcomes. and increasing op-

\
portunities for counselling would require the hiring cf more personnel. parti-
culacly midwives. Midwives have a record af excellance in the provision of

|
care tc all the risk groups noted above. Overall savings in decreased neona-
tal intensive care'costs. maternal high risk care costs have, however. been

|

demonstrated in many pilot projects. (6.7.8)

 

 
 

5. Finally. counselling of women will remain inadequate as lang as

the providers af care are not able to deal professionally and campassionately
with the issue of AIDS. Extensive work 1s still needed to prepare staff. on
all levels. for caring for HIV infected women. Information 1s needed an the
safety of Rhogam. prepared fram blecd products. Counseeling efforts sheuld be
made te prepare parents far the care of HIV anfected infants befcre they are
barn. Every hospital employee should have assistance in locating rnformation
about HIV. The staff should be provided with the opportunity to acquire the
informational and behavicral shills for coping with their rele in the provi-

sion of care. (9.10,11)

1. National Insatitue of Health Task Force Report on Cesarean Childbirth.1982

>. Porreco.fPand Meier. PR “Repeat Cesareans--mostly unnecessary" Cantemperary

 

08/GYN.Sept 211984.
3. Formato.lLS "Routine Frophylactic Episiotamy-15 it always necessary?” Ameri-
can Journal of Nurse-Midwifery. May/June.1985.

4. International Baby Food Action Network Breastfeeding Briefs. Sept..1987

an

. Boehme. TL. "Hepatitis EB" American Jeurnal of Nurse-Midwifery: March/April.
1985 -
&. The Alan Guttmacher Institute. Financing Maternity Care in the United
States, Blessed Events and the Bettem Line. 121 Fifth Ave. NYC. 10003.1987
9. Bruckher<MC and Mueliner.M. "Nurse-Midwifery Care af Adclescents” American
Journal of Nurse-Midwifery. Sept/Gct.,1985.
8. Faechrnik.Sb and Corbett MA Reducing Low Barth Weight among Scociroeconcmi—

cally High-Risk Adolescent Pregnancies" American Journal of Nurse-Midwifery

 

 
 

 

March/April. i985,
9. Peterson. Gayle "Addressing Compiications of Childbirth in the Frenatal

Setting". American Journal of Nurse-Midwifery. March/April. 1983,
eee

 

10.6 Physicisaa"s Bude to HT Counselina and Testing of Wemen caf Childbearing
Age. New York State Department of Health, 1998,

11.Goodman. JR and Sauve.RS, "High Risk Infants: Concerns of the Mother after
Discharce" BIRTH. Winter .1985.

 

 
 

oY

PEDIATRIC AIDS

Isolated Pediatric AIDS cases have first been observed
in the USA in 1979. Since 1985 the number of these young
victims has increased rampantly. It is estimated that today
there are around 3-5,000 HIV infected children in the USA and
that this number will increase rapidly -.- to reach 10-20,000
in 1991. These estimates may, however, be conservative. In
some urban areas up to 2% of all pregnant women are HIV infected.

In the Bronx alone we estimate that 500 HIV infected children
will be born in 1988. _

The problem of pediatric AIDS does not reside only in the
infected child, but almost uniformly is associated with co-infection
of adult family members, especially of mothers. These families
are, therefore, unstable, unable to care for themselves and for
their sick children and many children are abandoned or orphaned.
Moreover, almost 90% of HIV infected children are-neurodevelopmentally
handicapped, needing additional specialized psychosocial and
educational services. As a result of these circumstances the
treatment of pediatric AIDS is more complex, requiring major
commitments in:

(a) medical care for the child

(b) Co-treatment of adult family members

(c) Development of AIDS-comprehensive family care
centers

(ad) Aggressive outreach to the patients’ communities

(e) Development of day care centers, respite and residential
care facilities

(£) Rehabilitation services and special education

 

 
 

 

Our estimates for the yearly medical care of a child with
moderately symptomatic disease run at $35-40,000. Expenses
per child in day care/residentia] care, based on our experience
in an abbreviated 9AM - 3PM day care program,are estimated at
$50-75,000 yearly.

The burden of care for these children and for their family
is immense. Burn-out in Health Care Personnel is accellerating
and sources of funding are limited and inaccessible. Recently

ay

a $20,000,000 bill has been passed in Congress cited as the
"Abandoned Infants Assistance Act of 1987". We are extremely
pleased with the passing of this bill which is a small step
in the right direction. There is an urgent need not only for
allocation of more funds for pediatric AIDS but also to make

these funds easily accessible avoiding often insurmountable

bureaucracy.

 
 

 

TESTIMONY
BEFORE THE
PRESIDENTIAL COMMISSION ON THE

HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

PRESENTED BY
JAMES M. OLESKE, M.D., M.P.H.

JANUARY 14, 1988

 

 
 

 

Mr. Chairman and members of this presidential commission, I am Dr. James
M. Oleske, a pediatrician specializing in immunology. I direct the
Division of Allergy, Immunology, and Infectious Disease at The University
of Medicine and Dentistry of New Jersey and serve as medical director of

The Children's Hospital AIDS Program (CHAP), Newark, New Jersey.

As of November 1987, there has been 45,436 cases of Aguired
Immunodeficiency Syndrome (AIDS) reported in the United States. 641 of
these cases are in children under the age of 13. Estimates from The
Centers for Disease Control suggest that by 1991, there may be as many as
12.5 million Americans infected with the AIDS virus (Human
Immunodeficiency Virus ~- HIV) and 250,000 of these will be symptomatic
AIDS cases. Based on my experience in Newark, New Jersey, I fear that by
1991 the number of HIV infected infants and children in the United States
will be in the 10,000-20,000 range, most with symptoms. There are
currently over 100 active pediatric AIDS cases cared for at The Children's
Hospital in Newark, New Jersey. Since 1981, we have had the tragedy of

caring for 95 children who died because of their HIV infection.

Most infants and children are infected with HIV by perinatal exposure.
Their mothers became infected thru either intravenous drug use (60%) or
because their sexual partners were HIV infected (40%). Over half of the
mothers infected by sexual exposure were not aware of risk behavior in
their sexual partner and first became aware of their own infection only

after AIDS was diagnosed in their infant. Fifteen percent of HIV infected

 

 
 

 

children were exposed via transfusion with contaminated blood or blood
products. The cchort of infants born between 1978 and 1985, who received
blood transfusions in nurseries are at risk of developing HIV infection
and need to be followed for the next five to ten years. By 1985,
approximately 90% of U.S. hemophiliac patients who were tested, were HIV
positive. As of November 1987, 495 hemophiliacs have met the cpc
classification for AIDS. This represents approximately 2% of the total
hemophiliac population. An estimated 5000 hemophiliac patients have
developed minor symptoms of HIV infection. The present screening of blood
products and treatment of coagulation factors will prevent future cases of
blood acquired pediatric AIDS. All infants born to HIV infected mothers
will demonstrate antibody to the AIDS virus but only half will be truly .
infected. Almost all perinatally infected infants will become symptomatic
and die. Symptoms, which include failure to thrive, lymphadenopathy,
hepatosplenomegaly, encephalopathy, pneumonia, recurrent bacterial
infection, recurrent diarrhea, kidney and heart failure, appear usually by
6 months to 2 years of age. Once diagnosed with symptomatic HIV
infection, children rarely live for more than two years. It has been our
experience in Newark, New Jersey, that infants and children infected with
HIV have 2-3 hospitalizations per year, each lasting 10-12 days. The
average per year hospital cost for each child is $50,000. Based on
current estimates, by 1991 one of every ten pediatric beds will be
occupied by a child with HIV infection. There are over 40,000 pediatric
hospital beds in the United States. The hospital care cost alone of
pediatric AIDS cases by 1991 will almost reach 1 billion dollars. At the

 

 
 

 

present time, hospital costs are for most pediatric HIV infected children

(90%) covered by Medicaid. This program at best covers only half of the
real cost of hospitalization. The out-patient care requirements of HIV
infected children are extensive. The care of such a chronically ill child
often requires skills that are sometimes beyond the capabilities of a
mother, who herself is most often sick. Provision of care to be effective
must not only provide medical services to the infected child but also
provide the child's mother and family with a wide range of psychosocial
support services. Over 30% of pediatric AIDS cases are in foster
care.[See testimony of Ms. Mary Boland, Jan. 13, 1988] Training and
support services must be available for parents, foster parents, and
caregivers to prepare them to meet the wide range of services the HIV
infected child requires. It has been our experience in Newark that each
HIV infected child requires 2-3 out patient visits each month. The cost
of each visit is often high because of the intensity of the medical
services required ($600/mo/child). Only a part of out patient services
are covered by Medicaid, Projected out patient costs for Pediatric AIDS
by 1991 will exceed 100 million dollars. The burden of providing health
services to Pediatric AIDS patients has fallen heavily on the already
limited resources of urban hospitals. Pediatric AIDS is predominantly an
jliness that has occurred in economically depressed minority populations.
Continued spread of the AIDS virus among IV drug abusers and by
heterosexual contact will ensure the tragic increase in cases expected not
only in our urban poverty centers but eventually throughout the United

States. The major burden of Pediatric AIDS,

 

 
 

 

however, forthe next decade: will still fall or the already taxed inner
city public health “care ‘system:

- oa 1,4
Pr - = ' ? i

, te 4

bs ~ “

Based on over six ‘years of exercise ‘in clinical care and research of
Pediatric AIDS, ‘T would offer the following recommendations to The
i a? te

Presidential Commissiéni” pe

.
wa . t
bey ate a, + fe
'

~

I. ‘the sissiimaticd ‘and support. of ‘centers to provide comprehensive
"med tear and ‘psychosocial services to HIV infected children and
their others. ‘Pediatric Arps “should be considered a
natethal“cnila health problem. ‘Medical services should be
aVailable' and’ coordinated ‘for both the mother and child infected
‘with HIV. “At the present time HIV infected women can only

| réceive Gompeteht HIV related health services at centers which
are predoininantly directed at provision of health care to IV drug

: using males ‘ox gay men. ‘The HIV infected mother is frequently
unable or unwilling to spend the time required for her own health

care in addition to that of her child. Existing pediatric AIDS
‘treatiient’ programs éculd bé' expanded by addition of physicians,
nursing and social ‘Service staff support with expertise in
maternal ioaith issues.” ‘Suppliméental support to an exisiting
pediatric ‘AIDS program to provide such maternal service would be
spproxinately $350,000 = $450,000/yr in personnel. It would
require | ri. 5 to 2° inillion” dollars/yr ‘to establish new

" maternal=chiid ‘AIDS care programs.

|
!
|
!
|

 

 
 

 

II.

IIt.

IV.

The establishment of pediatric AIDS day care/respite care
centers. Such centers will need to be linked to either
established pediatric AIDS programs or ideally the maternal-child
AIDS program centers already suggested. These "day care" centers
would be able to serve the multiple care requirements of HIV
infected infants and children including a site for early
intervention programs for those children with neurological
handicaps (over 60% of HIV infected children will develop CNS
disease), and provision of respite care for the caretakers of
these children. Such centers would ideally serve as a resource
for the educational and psychosocial services needed by families
with an HIV infected child. siblings of HIV infected infants,
themselves not infected, frequently require social and
psychological supportive services that could be provided at these
respite care centers. The cost extimates for personnel for such
pediatric AIDS respite care centers would be $250,000/yr -

$350,000/yr.

Establishment of community based transitional foster care homes
to provide services to children who would otherwise become
"boarder babies". [See Ms. Mary Boland's testimony, Jan. 13,
1988]

Restructuring of entitlement programs (Medicaid/Medicare) to

extend and increase benefits for out patient services. New

 

 
 

 

|
|
Jersey has recently established a Medicaid waiver for a more

realistic support of out patient service available to AIDS
patients. Our Children's Hospital AIDS Program in Newark, New

|
Jersey emphasizes the importance of avoiding hospitalization thru

|
provision of extensive out patient services. This not only

|

increases the quality of life but also decreases health care
|

costs. ,

Continued and, as necessary expansion of the recently established

AIDS cooperative treatment groups (ATAU's and CSG's). These NIH

 

supported study groups need to provide the research and
|

investigational drug therapy studies that will eventually lead to
the treatment and prevention of HIV infection. As areas in the

U.S. are identified with increasing numbers of pediatric AID

cases, pediatric cooperative treatment groups will need to be
added to those already established. The personnel cost for a
Pediatric AIDS Treatment Group is $500,000/yr. These cooperative
treatment study groups should focus on research and
investigational drug studies. They should be linked to clinical
centers’ providing medical services to HIV infected patients.
The recognition, on the highest level of government, of the
snmenerice problem HIV infection poses for the next 10-20 years.
there needs to be a committment not only of appropriate funds to

provide disease survelence, biomedical research and clinical care

,
rat + tA

|
!
|
|
|
|
|
|

 

 
 

of HIV infected individuals (12 billion dollars by 1991) but
also a committment to coordinate leadership of the complex and
diverse agencies responding to this most tragic of epidemics.

This leadership must be educated, unbiased and compassionate.

Mr. Chairman, I appreciate the opportunity to make these recommedations,

and wish you Godspeed in your deliberations.

 

 
 

 

PAGE 519

'

they hadn’t learned was how or why to change their behaviors.

Lack of information is life-threateningg pet Blaming another

The good news about AIDS is that we don’t have to

catch it. Each of us has the responsibility not to become
infected with HIV. Parents must realize that just as we
explain the right way to cross the street long before we give
@ youngster permission to do so, we must teach our children
how to protect themselves from diseasegm all diseaseg.
Materials which guide parents on how to talk about these

CUS
sensitive issues reece be made available to them.

The incidence of pediatric HIV infection is rising.
We hold in our hands right now the future of literally
thousands of children. We must confront their issues
directly. We must not allow them to become prisoners in a war
of isolation, stigmatization and mistreatment.

I urge you to recommend immediate support for
creative and preventive education, interventions aimed at
primary problems of drug use and programs of innovative and
compassionate care.

Thank you.

 

 
 

 

A typical child, for example, may need ohygen” oral medications, gamma
globulin injections, strengthening exercises, maintenance of a special diet,
and regular visits to the clinic for examinations and blood tests. Goals may
range from treatment of life-threatening infections to such normal growth and
development tasks as potty training. All of this care involves the
coordinated effort of the physician, clinical specialist, social worker,
physical therapist, nutritionist, home care nurses, and natural or foster

parents.

May I recommend that the following issues be considered in planning to

meet the needs of these children:

o Infants born to HIV-positive mothers must first have available routine
well baby health care, Regulations must be changed so that
once identified with HIV infection the child becomes eligible for
entitlement programs. Currently, she/he must wait until a diagnosis of
AIDS is documented. Also, the child if at all symptomatic, should not
routinely receive live virus vaccines such as oral polio and the
measles, mumps and rubella shot. Killed polio virus vaccine, not
easily accessible, must be made inexpensively available to private
practitioners and clinics.

o HIV-positive mothers need similar routine care and screening. To
eliminate the need for "twice as many" visits, care should be avaliable
under one roof. Therefore, it seems practical to establish mother/child
clinics staffed by adult as well as pediatric practitioners. Medical
care and health and drug counseling should be available. Thus, by better
maintaining the parents’ health we extend their ability to care for
their. own child.

 

° Care must be assumed by all providers, Infected children usually become
ill more quickly than adults. As this occurs, personnel must be
available to care for them in hospitals and extended care facilities.
Discrimination in health care based on diagnosis must be seen as part of
the generic definition of discrimination. Additionally, foster care
agencies must be willing to consider non-traditional populations such as
the handicapped or HIV-infected persons as potential caregivers.

 
 

Oo Children die from this disease at the same rate as adults. Experimental
drugs, therefore, must be made equally available to children as well as
adults. The standard practice of using conventional treatment until new
ones are approved is unfair to children because there are no conventional
treatments for HIV infection to offer them.

Oo Home care is the most humane and cost effective way of caring for most
patients. Standard models of home care delivery, however, cannot
effectively address the needs of ill groups, i.e., whole families.

Fiscal constraints, such as 3rd party reimbursement, are largely
responsible for this. Existing services must be thoughtfully expanded to
reflect answers to real needs. For example, many mothers, even though
ill themselves can care for the child during the day but are quickly
exhausted if the child is wakeful at night. Standard support considers a
night nurse a luxury. However, if providing assistance at night so the
mother can get sufficient sleep to maintain her strength enables both
mother and child to remain at home, then this assistance is a logical
alternative rather than a luxury. Another option would be extending
foster care to the whole family. This could include underwriting the
cost of home care for a parent and child living with a grandparent or
other family member.

re) Many children live with parents who are still active drug users.

Standards for child protection must be scrutinized and services expanded
as needed to eliminate the long wait for investigative actions. Models
for cooperative arrangements with local police departments need to be
established as a way of providing protective support to home care staff
who must spend time in high crime rate areas. These models must include
regular "checking" of in-home personnel, not just providing "taxi"
service.

oO Existing services are not being utilized because parents are unable to

make_in-person applications. Entitlement programs such as Medicaid,

W.I.C. and S.S.I. must increase staffing at local levels to include
sufficient outreach workers to meet this need. An alternative might be
the authorization of other caregivers or family members to provide the
required documentation.

This disease is preventable through behavior change. It is spread almost
exclusively through specific human behaviors and can therefore be effectively
stopped by changing those behaviors. Drug treatment and anti-poverty programs
need enhancement. A 50-50 chance of having a healthy baby versus having one

with HIV seems like good odds to a woman who perceives her future as otherwise

hopeless because of her drug addiction or social status.

 
 

 

oO Adolescents today will be the parents of the infected children _ tomorrow.
Information, confidential testing, and detailed counseling must be made
available, hopefully with, but even without, parental consent.

0 Education is essential but telling "facts" is not enough. Teenagers
pass tests about AIDS in the classroom yet translate none of that
knowledge into behavior change. Nearly all of the mothers of the
children with whom we work knew facts about HIV transmission.

What they had not learned was how or why to change their behaviors.

Lack of information is life threatening. Blaming another person is not
the answer. Each of us has the responsibility not to become infected
with HIV. Parents must realize that just as we explain the right way to
cross the street long before we give a youngster permission to do so, we
must also teach our children how to protect themselves from diseases.
All diseases. Materials which guide parents, the primary educators of
children, on how to talk about these sensitive issues must be made
available.

Ladies and Gentlemen, the incidence of pediatric HIV infection is
rising. We hold in our hands the future of thousands of children. We must
confront all of their issues directly. We must not allow them to become

prisoners in a war of ignorance, stigmatization and mistreatment.

I urge you to recommend immediate support for creative preventive
education, interventions aimed at the primary problems of drug use, and

programs of innovative and compassionate care.

 

 
 

Testimony

of

Barbara B. Blum
President

Foundation for Child Development

Before the
Presidential Commission on the Human
Immunodeficiency Virus Epidemic

Washington, D.C.

January 14, 1988

 

 

 
 

a
I am Barbara Blum, president of the Foundation for ‘Child Development, an
organization that supports research, policy, and direct service programs for
disadvantaged children. The foundation's service programs are focused on New
York City, which, as you know, has the highest concentration of AIDS cases and
the largest foster care caseload in the nation. In my previous position as New
York State Commissioner of Social Services during the late 1970s I periodically
dealt with a problem reminiscent of the situation facing many communities today
-- upsurges in foster care caseloads that required rapid expansions of the child
welfare system. One lesson that emerged from those experiences that may be use-
ful to the Commission is that with careful planning and intensive recruitment
it is possible to significantly strengthen services for hard-to-place children.
Boarder babies are infants or children who are medically ready for discharge
from a hospital but who have no family or foster caretakers prepared to take
them in. In one month last summer, New York City had 30 children boarding in
hospitals who tested positive for the HIV virus; in the first five months of
1987, Harlem Hospital cared for 37 boarder babies with AIDS. Unless preventive
steps are taken or research produces a cure, the growth in pediatric AIDS cases
expected in the next three years is virtually certain to result in an increase
in the number of children abandoned in hospitals. To list the circumstances

that lead to that abandonment -- the children's own health problems; poverty,

 

homelessness, drug addiction, illness, and death among their parents; the fear
of contagion among potential caretakers -- is also to describe the magnitude of
the challenge involved in offering these children appropriate care.

But however compelling, the number and complexity of the problems presented
by these boarder babies has tended to obscure two other significant facts about

their situation.

 
 

 

e First, viewed as a national responsibility, the numbers of
boarder babies with AIDS are currently small and can be
manageable; if steps are taken now to develop workable
systems for caring for them, it is far less likely that the
problem will exceed our capacity to solve it in the future.

e Second, despite their special and tragic life circumstances,
these children have no less need, and often more, for the
experiences that child development experts believe are im-
portant for all children -- life in a homelike setting,
appropriate stimulation of cognitive and language abilities,
closeness and affection from consistent adult caretakers.
These experiences should be available to the infants who
initially test positive but eventually test negative for the

AIDS antibody and to children infected with the virus who

are capable of surviving for some number of years. In the
case of AIDS children, we must bear in mind that predicted
life expectancies are apt to change as more information on
both the disease itself and its treatment becomes available.
Moreover, society has a moral obligation to ensure that all
children, however brief their life expectancies, have access
to these critical developmental experiences.

While a great deal remains to be accomplished to create services that will
secure these benefits for AIDS boarder babies, enough is known now to indicate
how we ought to proceed. Future work to guide the development of a service
system responsive to the needs of these children should be guided by three broad

principles.

 

 

 
 

I

1, While vigorous efforts must be carried out to remove AIDS boarder babies
from hospital settings, these environments, however’ temporary, should be as
homelike as possible.

Hospital wards housing AIDS children should be inviting and attractive.
Children should receive consistent care from a small number of nurses. Parents
and other family members who may eventually be able to assume care for the
children should be made to feel welcome. Children should be stimulated by play
and other activities appropriate for their age. (Besides special day programs,
one model used at the Bronx Municipal Hospital is a day care center for children
with AIDS, which is located in the hospital. The center is not only available
to children living in the community but has cared for AIDS children living on
hospital wards.)

Except for the day care services, the costs of which I will discuss shortly,
these hospital care practices can be carried out within the confines of an
institution's regular routines and expenditures. Capital costs for creating
appropriate settings can be incorporated into a special Medicaid rate, as can

the appropriate staffing costs.

 

It is crucial, however, to assign to the hospital ward at least one staff
member usually not available in a medical institution -- a case manager respon-
sible for coordinating all necessary services for boarder babies and their
families and for acting as a liaison with the child welfare system to secure
placement for the child. The caseload for this manager, whose yearly salary
would be in the range of $25,000, should not exceed 10 AIDS babies at any one
time. Assuming a three-week hospital stay for the child, this individual could
handle an estimated 170 cases a year. In the end, the costs of this position
would likely be offset by shortened hospital stays and by transfers to more
suitable and more economical settings. In connection with the hospital services

just discussed, large cities should look at the feasibility of designating

 

 

 
 

o_O eee

particular hospitals to care for AIDS boarder. babies. Compared to a system in
which all hospitals are expected to assume these responsibilities, targeting
would result in both cost savings and stronger and more expert services.

2. At this point, there is no reason to assume that it is necessary to
create institutional foster_care settings for boarder babies with AIDS; efforts
would be better devoted to recruiting individual foster parents and to developing

and supporting small group homes for these children.

~~

The Commission has, I believe, already heard testimony from Mary Boland of
the Children's Hospital of New Jersey on the pioneering work of New York's Leake
and Watts Home for Children in establishing a foster homes program for children (
with AIDS, a program that has so far resulted in the placement of 30 infants.
(Attachment I to this testimony describes the program.) The directors of that
program and of the Bethanna Home outside of Philadelphia, which has nine AIDS \
children in foster care, agree that although recruiting foster parents for this
population is a major undertaking, it is nevertheless possible to identify,
especially through personal contacts, special individuals who are prepared to
make a commitment to AIDS children.

Such individuals’ tend to be unusually well informed about the disease and
to have had both some medical training, and personal experience with a severe

illness. Even when they are compensated at a special rate for foster care --

 

experience suggests at least a yearly rate of over $13,000 in the New York area
and perhaps considerably more if the aim is to encourage well salaried medical
professionals to stay at home full-time with the children -- the costs are far
below care for children in hospital wards and probably for children in institu-
tional foster care settings.

In view of developmental needs set forth at the outset of this testimony,
if it is not possible to place a boarder baby with a foster parent, a small

group home is greatly préferable to a larger more impersonal orphanage-1ike

 

 

 

 
Po
setting. Group homes can be staffed by health care workers or workers with
backgrounds in earl, childhood and special eduéation; some nursing care is also
needed. Per diem costs for St. Clair's Home in New Jersey, which cares for five
children with the equivalent of 10 full-time heath care workers, a housekeeper,
a social worker, and a nurse, are approximately $240. As is the case in a home
operated by the Boston city health department that encourages the involvement of
biological parents who are too ill or drug-addicted to assume total care for the
children, it is possible to use these homes to maintain a bond between the child
and the natural parent. /'

For children who require more intensive medical services than can be pro-
vided ina group home but still do not need full-time hospital) care, the most
promising solution may be an intermediate care facility. In New York State, the
estimated cost of providing this service to developmentally disabled children is
$120 per day. Children in these institutions should receive support from the
Medicaid program. More broadly, children diagnosed as having AIDS should have
automatic access to Medicaid.

3. To remove boarder babies from hospital wards, society must be prepared

to offer natural parents, relatives, and foster parents a wide range of support

 

services that will strengthen their emotional, economic, and practical capacity

to nurture these children. é

 

Among the key services needed are respite care, day care, and homemaker and
home health aid assistance. Costs for home health aides and homemakers recruited
through a New York City health care agency are in the range of $8.50 to $10.50
an hour; for practical nurses, $35 a visit and for registered nurses $40 a visit.
In New York State, respite care is offered to developmentally disabled children
in some intermediate care facilities at the average daily rate of $120 per day,
as cited earlier. Care offered through a smaller facility such as a group home

could be less costly.

 
 

 

,

Clearly, day a is necessary if foster. parents wish to work, as they
increasingly do. This service could also be immensely helpful for non-working
adults who may be more willing to become foster parents of AIDS children if they
know that they can share the heavy emotional and energy demands of caring for
these children with responsible professionals. The Bronx Municipal Hospital day
care center reports that the availability of their services has been a signifi-
cant factor in the decision of more than one foster parent to accept an AIDS
boarder baby.

The Bronx Center currently cares for 22 children with a staff of a director,
three head teachers, four assistants, four part-time bus escorts who perform
some assistant teacher duties, a full-time nurse and social worker, a part-time
medical director, and some auxiliary help from the hospital. It was not possible
to obtain accurate estimates of the costs of operating this facility for this
testimony, but the hospital does report that start-up funds for the center, con-
tributed by the New York City Council, were $400,000. More generally, because
day care facilities may or may not be subsidized and because they involve so
many different services, it is difficult to present typical costs for operating
these facilities. One estimate from the Children's Defense Fund is that the
1985 monthly average day care cost for children younger than three in seven
major U.S. cities was $394.: Clearly, costs for AIDS children would be higher,
reflecting their more intensive service needs.

Foster parents of AIDS children also must be offered the opportunity to
take part in regular training sessions throughout the time they are caretakers
and to meet with other foster parents in their situation to discuss common

concerns. In some cases, it may also be useful to include biological parents in

 

such discussions. It: would be a logical extension of the functions of several
of the kinds of service providers discussed in this testimony -- group homes,

|
respite care facilities, day care centers -- to provide these training services.
 

 

A group home, for example, could not only care for former boarder babies but
could train and support individual foster parents’ who have assumed care either
for babies who have been placed out of the group home or for other AIDS children
in the community. The home could also reach out to interested biological parents
of both children in its care and in neighboring foster homes.

This model is not unlike one just being tried in New York City, where the
Center for Family Life, a family agency in Brooklyn, will serve as a resource
for a cluster of individual foster and biological families of children in the
community. (Attachment II to this testimony gives a brief description of this
new program.) While the New York plan is not expressly designed for AIDS chil-
dren, it is likely that it could easily be adapted to meet their needs.

In fact, careful and creative thinking about how to meet the developmental
needs of AIDS boarder babies will almost certainly entail an examination of
plans and models that hold forth promise of rationalizing and improving foster
care services for many kinds of hard-to-serve children. To the extent that the
exercise of developing appropriate care services for AIDS boarder babies acts as
a catalyst for broader reform of the child welfare system,'a grim epidemic may
at least bring about an improvement in the way we care for vulnerable children.
Conversely, if the notion does nothing to stop growing momentum for consigning
AIDS children to a contemporary version of the orphanage and if, moreover, these
practices in treating AIDS children are allowed to spread to other groups in the
foster care population, then the next generation may conclude that in responding

to a tragedy, we compounded it.

 

 
 

 

Il.

Ill.

Attachments

"Quality Care for Ill Children: AIDS~Specialized Foster Family Homes,"
testimony of Phyllis Gurdin, Leake and Watts Children's Services, before
the Senate Subcommittee on Social Security and Family Policy on Acquired
Immune Deficiency Syndrome (AIDS)

Overview of a New Model for Foster Care Services in Operation at the
Center for Family Life in Sunset Park, Brooklyn, New York

Gary Anderson, Children and AIDS: The Challenge for Child Welfare, Child
Welfare League of America, 1986.

 

 
 

 

Attachment 1

_ Quality Care For 111 Children:

AIDS-Specialized Foster Family Homes

Testimony of the Leake and Watts Children's Home
Before the Senate Subcommittee on Social Security and Family Policy
on Acquired Immune Deficiency Syndrome (AIDS)

Phyllis Gurdin

Director AIDS-Specialized Foster Family Homes
Leake and Watts Children's Services
Yonkers, New York
September 10, 1987

 

 
 

 

Mr. Chairman and members of the Subcommittee, my name is
Phyllis Gurdin and I am the Director of AIDS-Specialized Foster
Family Homes for Leake and Watts Children's Services, Yonkers, New
york. I want to thank you for the opportunity to testify this
morning regarding foster care for children infected with the HIV
virus.

Leake and Watts Children's Services is a multiservice child
welfare agency servicing children for last 156 years. We service
approximately 12808 children in programs such as day care,
preventive services, foster care, group home care, and residential
treatment. AIDS is the newest and smallest program within the
agency; at this point we are servicing 22 children in foster family
homes.

Foster care has a long history of caring for children with
multiple and serious problems. Over the years, children who have
been abandoned, abused, or neglected, and children who are
developmentally or physically disabled or mentally i1l1 have been
served in foster homes. With the coming of the deadly Acquired
Immune Deficiency Syndrome (AIDS), however, a new demand is being
made on the foster care system. Hundreds of young children have
been infected with a virus that seriously suppresses the human
immune system, and an increasing number of these infants come from
families who are unwilling or unable to care for them. As a
result, many young children, whose infection was usually contracted
intrauterine, need placement in foster homes.

The initial placement for many children with AIDS or related
complexes has been a hospital setting. This placement has made
sense when a child was acutely ill but it is not a long-term
setting for the quality care of children. The child welfare system
has been increasingly asked to provide homes for children with the
AIDS virus. Some children have been placed in foster homes without
careful planning and without the knowledge that they had AIDS or an
AIDS Related Complex (ARC). Once the disease is diagnosed, foster
Parents are often unwilling to care for them. The child welfare
system was unable to place these children through its regular
foster care programs.

In the New York City metropolitan are, one of the country's
first foster care programs specializing in serving children with
Aids or ARC has been established. In October 1985, Leake and Watts
Children's Home, a 156-year-old New York City multiservice child
caring agency, began a foster home program for children with Aids.

Transmission

Children do not "catch AIDS" as they might catch influenza or
chicken pox. For children, the disease is acquired only though
direct exposure to the contaminated blood of a person in a high-
risk group for AIDS (typically due to blood transfusions using
blood products attributed to infected intravenous drug users or
homosexual men) or in utero. The largest number of children
infected are children of intravenous drug users (or their sexual
partners) who are infected with the disease or are carriers of the
disease; the virus is transmitted to the children in utero. All
research on the transmission of the disease concludes that it

 

 

 

 
 

cannot be transmitted by casual contact, which is defined as living
in the same household with an infected person, casual kissing, or
swimming with an infected person.

AIDS is a blood-borne disease, transmitted. sexually, or by
sharing contaminated needles, or in utero, and has not been proven
to be spread by casual contact. No nurse, doctor, foster parent,
teacher, or peer has ever contracted the HIV virus from an infected
child. The fact that AIDS is not a disease of casual contact is of
great importance to the child welfare system. Children carrying
the HIV virus can be placed in foster care without jeopardizing the
foster parents or their family.

TREATMENT

There is no cure for AIDS at the present time. Medical researchers
are experimenting with a variety of antiviral agents and immune
system stimulators. These attempts to either kill or render the
virus harmless, or bolster or restore the body's immune system,
have shown promising signs, but none has demonstrated the ability
to stop the disease. But the treatment is increasing the life span
of these infected children.

AIDS Project

In October 1985, New York, New York City reported 87 cases of
children with Aids. It was estimated that there were five times as
many children with ARC. Of these children, at least 15 children
with Aids or ARC were identified as abandoned by their parents and
consequently in need of foster placement. Some children were
hospitalized "boarders" for periods of two month to two years; they
were not in need of inpatient medical care. The child welfare
agencies of the city were unable to find foster homes for them.

In the fall of 1985, Leake and Watts Children's Home was
funded for nine months by the AIDS Institute of the Health
Department of the State of New York to recruit and establish foster
homes for children with AIDS or ARC. If this initial step was
successful--if foster: parents could be found who were willing to
care for children with. the AIDS virus--the New York State
Department of Social Services and New York City Department of
Special Services for Children would provide the funds to establish
and maintain a model pilot foster home program.

It was recognized that finding a sufficient number of
qualified foster parents capable of meeting the needs of these
children would be the most difficult phase of this program. TO
carry out the AIDS Foster Care Project, the agency employed a
project director and a foster parent recruiter. The director had
worked in child welfare for over 28 years and was familiar with all
aspects of foster care and adoption. The recruiter, a psychology
doctoral candidate studying AIDS, was well informed concerning the
disease and knew many members of the network of New York agencies
serving AIDS patients.

 

 

 

 
 

 

|
v

The project began with this two-member team establishing
working relationships with the AIDS network (which primarily served
a homosexual clientele). The team developed associations with all
agencies serving AIDS victims, including the Department of Health,
the Visiting Nurse Service, the AIDS Institute, Gay Men Health
Crisis, and medical and social work staffs of city hospitals. This
activity enabled the team to: 1) keep abreast of new knowledge
about the disease, aS new finding were being reported almost daily;
2) alert city agencies and community groups to the existence of the
project; and 3) identify potential resources for the children and
foster parents who would eventually be recruited.

Recruiting Foster Parents

Personal contacts were established with community groups, including
church groups, religious orders, nursing associations, hospice
organizations, and groups serving the gay and lesbian community.
These contacts resulted in invitations to speak at public meetings
where the director or recruiter might then identify potential
foster parents.

The project originally identified the Bronx as a catchment
area for recruitment. Geographic limitation would facilitate
supervision of the foster homes and assure access to medical and
relevant programs. The Bronx was selected primarily because it is
the location of the Albert Einstein Medical Center, where pediatric
immunologists were active in medical research on pediatric AIDS and
had developed comprehensive medical services for the children. in
addition to this medical expertise, The Bronx Municipal Hospital
was in the process of developing a pioneering day care and
educational facility for children with AIDS. This would be an
important resource for foster parents, because New York City had
decreed that no child with the HIV virus could attend city day care
or Head Start programs.

In actuality, the plan for a catchment area had to be
abandoned because it was not possible to recruit a sufficient
number of homes in the Bronx to serve all the children. In
addition, as the number of children with the virus increased, it
became possible to locate medical and social services for the
children throughout the metropolitan area.

Before the establishment of the project, the public child
welfare agency had been unsuccessful in attempts to recruit foster
parents through a mass media approach. Personal networking was
therefore preferred in the project. This involved the director's
seeing a selected group\of foster parents who had faithfully served
children through their |affiliation with the agency, and giving them
a detailed description! of the disease, the needs of the children,
and the programs's supports for foster parents. Foster parents who
responded positively to the presentation were asked to help recruit
homes through their friends, relatives, and community affiliations.
This initiative was successful, and the first foster home to be
approved was referred by a Leake and Watt's foster parent.

 

 
 

 

 

nT

Community networking was also successful. Organizations and
hospitals publicized the program through their publications. New
York State's Department of Social Services and New York City's
Special Services for Children publicized the project. In addition,
positive, informed newspaper coverage resulted in a number of
referrals. The director undertook a vigorous schedule of speaking
engagements to a wide variety of audiences. These community
contacts resulted in the recruitment of five qualified foster
homes.

In summary, the project was publicized both officially and by
word of mouth whenever possible from October 1985 through June
1986. During this nine-month span there were approximately thirty
inquiries. Six homes were approved and ten children were placed.
The goal of the pilot project had been achieved. The number of
children needing foster care placement has continued to grow. As
of September 1, 1987, twenty-two children are placed in fifteen
foster homes (twenty-three children were placed since January 1986,
one child died). At this point in time there are at least thirty
children awaiting foster care placement in New York City Hospitals.
The referral of prospective foster parents continues but at a very
Slow pace.

Selecting Foster Parents

Among the criteria for screening the appropriateness of a potential
foster parent for an AIDS child were the following: 1) accepting
Married or single adults; 2) not accepting a home with a child
under the age of ten, to protect the AIDS or ARC child from
potential exposure to infections that could be introduced by a
younger child; and 3) accepting parents who were informed
concerning AIDS and who expressed confidence in handling the child
and had little fear of transmission.

A maximum of two children were placed in each household;
whenever possible, two children close in age were placed together
to reduce the isolation of each foster child by providing a peer
relationship in the home. It was also believed that placing two
children would not overwhelm the foster parents and might help them
cope with separation and grief should one of ;the children become
too ill to be maintained in the home.

Description of Foster Parents

With only fifteen foster parents it is not possible to establish a
definite profile of foster parents willing to care for a child with
the HIV virus. Twelve of the fifteen foster parents are single
women. Seven are black, six are Hispanic, and two are white. The
foster parents range in age from thirty-two to seventy. Only two
work outside the home. One is a social worker for the Department
of Social Services; the other is a L.P.N working on a medical staff
of a large hospital. In eight instance, the family has a minimal
income based on various entitlement programs. In, most instances,
the major part of the family income is derived from foster care

4

 

 
 

 

payments. Each family receives a special rate of $13,608 yearly,
($1134 monthly), per child in care. Foster parents have biological
children living in the home; none is younger than age ten.

The project staff has assumed that the foster parents are
similar to those who care for "normal" children. However, certain
traits are common to all or most of these six families:

Knowledge: the foster parents were very well informed
concerning AIDS before contacting the agency. They had read
news articles and followed special television presentations
on the disease.

Confidence: they were convinced that they were not
endangering themselves or their families by caring for an
infected child. This was discussed many times during the
home study and if anyone expressed fears or doubts about the
transmission of the disease they were not accepted.

Medical Training: in eight of the fifteen homes, the foster
parents had formal training as a nurse or nursing attendant.
All eight had nursed patients with contagious diseases and
had experienced the death of at least one patient they had
nursed. In each case they had mourned the loss of the
patient but had been able to continue in their vocation.

Illness History: in nine of the fifteen home, the foster
parents had personally experience severe illness--in seven
cases the spouse had died of cancer or heart disease, in two
cases the foster parent or spouse had survived cancer.

All of the approved foster parents said that they had given a
great deal of thought to death, but their basic life view was very
"present day.” They recognized that seventy percent of AIDS
children die and that there was no cure for the illness. They said
they could accept this prognosis. Rather than trying to save the
child, they saw their goals in terms of providing a good quality of
life for as long as the child's health would permit. Although all
were offered a "normal" foster child in place of a child with AIDS
or ARC, they preferred to care for a child with the disease. ,Their
choice was significantly influenced by the special payment rate and
the accompanying support services, but they were reluctant to
discuss these considerations because they feared that their
motivation would be questioned. The increased rate for AIDS
children is justified by the nature of the demands and challenges
for the foster parent.

Description of Children

As of September 1987, twenty-two children are placed in foster
homes. Fifteen are male, seven female. Seven are hispanic,
fourteen are black, and one is white. They range in age from
fourteen months to seven years.

 

 
 

 

The children were all placed from hospitals. These children
had been hospitalized any where from five months to five years for
no medical reasons. Twelve children had never lived any where
else. The other ten had lived either in foster homes or with
parents. In five of these cases the children were abandoned after
their foster parents or their own parents learned of their
condition. Five children were removed from their parents by the
court because they were neglecting them.

All the children were born to intravenous drug users and had
contracted the disease intrauterine. Fourteen children were
diagnosed as ARC and seven were diagnosed as meeting the CDC
criteria for AIDS. The children have all suffered a number of
illnesses such as pneumonia, severe ear infections, frequent bouts
of diarrhea, severe skin conditions, and failure to thrive. They
have evidenced some degree of developmental delay ranging from
mental retardation with cerebral palsy to a developmental lag of
Six months. In addition, five children exhibit hyperactivity,
Sleep disorders, and aggressive-destructive behavior. It has not
been possible so far to consider the relative sources of these
delays and disturbances, the disease itself, the child's past
environment, or the parents' drug addiction. The children are
making progress in reaching new developmental milestones but the
Prognosis for continued gains is unknown.

At the time of placement the location of twenty-one natural
mothers was unknown. Since then, eight mothers have been located;
seven have AIDS or ARC and the eighth died of AIDS. Only two
mothers have expressed any interest in seeing their children; one
has three other children living with her. Two of these children
are older than the foster child and do not have AIDS. A younger
Sibling has been tested but the results were inconclusive; doctors
suspect the infant will develop the disease later. The other has
grown children. In all twenty cased the placed children have
Siblings. These siblings are in the care of relatives, with other
agencies, or their location is unknown. Two siblings have died of
AIDS. It appears that none of the mothers is able to care for her
Placed children.

Services for Foster Families

The foster families are provided a special rate, financial aid,
insurance, and professional support services. They receive $1134
per month per child, the highest foster care rate paid by New York
State. In addition the foster family receives payment for
approximately thirty-two hours a week for health aides for respite
care. The agency supplies all equipment (carriages, cribs, play
equipment) and extra clothes, including, if necessary, washing
machines, to avoid criticism from neighbors if the foster parent
had to use a public laundry and the child's disease became common
knowledge. Funds for recreation are provided. If foster families
have no source for medical insurance the agency covers the cost of
medical insurance premiums. Foster parents continue to receive

! 6

 

 
 

 

Payment if a child needs brief hospitalization. The agency
receives an average of $1@@ per day per child to cover all costs.

Another source of assistance to the foster parents and
children has been the project staff. In addition to the director
and psychologist-foster parent recruiter, a registered nurse and a
social worker were hired. Help is available to the foster parent
twenty-four hours, seven days a week.

Summary

Recruiting foster parents is a difficult task that requires
a multifaceted strategy using both formal and informal networks;
media announcements generate a high volume of interest but the most
appropriate candidates have been located through foster parent and
community networking.

2. Successful recruitment depends upon finding foster parents
who are well informed concerning the disease, are not afraid of
contagion, and, it would appear, have some medical
background/experience in caring for ill people.

3. Recruiting and keeping foster parents are made possible at
our present level of knowledge about and treatment of AIDS by
offering an exceptional boarding home reimbursement rate (even at
this rate one month of foster care is less expensive than two days
in the hospital!) with continued financial assistance during
hospitalizations. Maintaining foster homes also requires intensive
medical and psychological support services.

4. Because assisting foster parents and children places
strong demands on staff members for support, information, and
guidance, caseload size must be small.

Conclusion

Whenever possible HIV infected children should remain with their
families. Adequate social and medical support must be available to
families. This should include decent housing, home care and
respite care.

Individual foster care represents the best alternative for the
child who cannot be cared for within his/her family. Increased
funding for foster parents, additional social and practical support
such as day care, home care and professional support will help
recruit badly needed foster parents.

Innovative small group homes should be established. fThis
would service the population of children, for whom as yet there is
no individual foster parent available. In addition, it will
service a group of children who are too ill to be cared for by
foster parents but who do not need an acute hospital facility.

 

 

 
 

 

There is an’ acute shortage of social workers, nurses, and

teachers who are: Willing £0 work with «these ‘children.
be increaséd education; and. financial” ineentives .

infected children|.

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Attachment II

overview of a New Model for Foster Care Services
in Operation at the center for Family Tite in Sunset Park

The Center for Family Life, located in the Sunset Park neighborhood in Brooklyn,
New York is developing a new system of providing foster care services to chil-
dren in its community. The center, which has been operating since 1978 and
which offers families in the neighborhood a comprehensive range of personal and
social services, has been widely praised for its holistic approach to assisting
children and families. Its new.program will serve approximately 25 children and

their foster and natural families,

In New York City, where foster care. services are provided both directly by the
city's child welfare agency, the Office of Special Services for Children, and by
voluntary agencies, it has not been common practice to ensure that the biological
and foster families of children are situated in the same neighborhood, nor is
there usually available a single social service agency that stands ready to sup-
port both families. The Sunset. Park program is expected to produce information
on the usefulness of offering a range of services through a core facility -- in
this case, the Center for Family Life -- to foster children and both sets of
families, all of whom will be living in a single community. The core staff will
be responsible for dispersed but nearby smal] satellite foster family homes or
apartments in the same general neighborhood as biological families of children
requiring out-of-home care for a limited period of time. As children return
from foster to natural homes, the center will continue to work with both them

and their families to prevent further out-of-home placement.

Initially, the project will be. staffed by a clinical supervisor; a homefinder
who will recruit and certify neighborhood families to. become foster caretakers;

",
.
‘

 

 
 

 

-2-

y
one or more social workers, who will provide continuing therapeutic counseling
and case management services; and an experienced child-care worker, who will
help foster and biological parents to meet child-care/developmental behavioral
management needs. In addition, like all families in the neighborhood, the
foster and biological families in the core program will be eligible to take part

in other programs offered at the center.
|

The new core program will be developed with the close cooperation of the New
York City Special Services for Children agency and its Brooklyn office. The
planning and initial implementation periods of the project are supported by a

grant from the Foundation for Child Development.

For further information, contact:

Sister Mary Geraldine

Sister Mary Paul

The Center for Family Life in Sunset Park
345 43rd Street "
Brooklyn, New York 11232

(718) 788-3500

 

 
 

 

STATEMENT

AUDREY F. MANLEY, M.D.. M.P.H.
DIRECTOR

THANK YOU FOR INVITING ME TO SPEAK TO YOU TODAY TO DISQUSS THE ROLE OF
THE NATIONAL HEALTH SERVICE Corps (NHSC) IN PROVIDING PRIMARY CARE
SERVICES TO PERSONS WHO HAVE DIFFIQULTY RECEIVING CARE BECAUSE THE Y LIVE
IN AN AREA OR ARE PART OF A POPULATION GROUP FOR WHICH ADEQUATE PRIMARY
HEALTH CARE MANPOWER RESOURCES ARE NOT GENERALLY AVAILABLE.

THE PRIMARY MISSION OF THE NHSC FROM ITS INCEPTION IN 1970 HAS BEEN TO
PROVIDE PRIMARY CARE SERVICES TO ISOLATED. OR UNDERSERVED AREAS AND TO
POPULATION GROUPS WHO, BECAUSE OF ECONOMIC BARRIERS. GEOGRAPHIC, MINORITY
STATUS, LANGUAGE. CULTURAL OR OTHER CONSTRAINTS, ARE NOT ABLE TO OBTAIN
BASIC PRIMARY CARE SERVICES THEY NEED. AT PRESENT WE ESTIMATE THAT 34
MILLION PERSONS IN THE UNITED STATES LIVE IN AREAS OR IN GROUPS WHICH
HAVE SUCH SHORTAGES OF PRIMARY CARE PROVIDERS. PEPSONS WITH AIDS MAY BE
CONSIDERED AMONG THESE “UNDERSERVED POPULATIONS".

AS A RESULT OF THE SCHOLARSHIPS AWARDED IN THE MID TO LATE 1970'S, THIS
PROGRAM HAS PRODUCED LARGE NUMBERS OF SERVICE-OBLIGATED PROVIDERS.
REACHING A PEAK FIELD STRENGTH OF APPROXIMATELY 3.200 IN 1986.

 
 

-2-

THE CURRENT FIELD. STRENGTH OF 2,800 NHSC MEMBERS HAS BEEN USED. TO MEET
THE PRIMARY HEALTH CARE NEEDS OF VARIOUS AREAS AND. POPULATIONS THROUGH
ASSIGNMENTS IN COMMUNITY HEALTH CENTERS (CHC) AND. MIGRANT HEALTH CENTERS
(MHC) (2,170 PROVIDERS), THE INDIAN HEALTH Service (IHS) (260 PROVIDERS),
THE BUREAU OF PRISONS (40 PROVIDERS), AND. THROUGH PRIVATE PRACTICE
ARRANGEMENTS (330 PROVIDERS).

AFTER 1976, SCHOLARSHIP AWARDS WERE ALLOWED TO DECLINE IN RESPONSE TO THE
INCREASING NUMBER OF PHYSICIANS BEING GRADUATED. FROM MEDICAL SCHOOLS AND.
LOCATING IN AREAS WHICH FORMERLY HAD. FEW HEALTH CARE PROVIDERS. AS A
RESULT OF THE DECLINE IN SCHOLARSHIP AWARDS SINCE 1980, FEWER THAN 100
OBLIGATED. NHSC PROVIDERS WILL BE AVAILABLE FOR THESE ASSIGNMENTS BY THE
YEAR 1994, |

On DECEMBER 1, 1987, THE PRESIDENT SIGNED PUBLIC LAW 100-177, PROVIDING
FOR THE ESTABLISHMENT OF A NEW FEDERAL LOAN REPAYMENT PROGRAM, A STATE
LOAN REPAYMENT PROGRAM, AND. SPECIAL REPAYMENT PROVISIONS FOR PREVIOUS
SCHOLARSHIP DEF AUL TERS WHO ARE IN BREACH OF THEIR, SERVICE OBLIGATION.

UNDER THESE PROGRAMS, WE WILL INITIALLY MAKE AVAILABLE 40 LOANS AND WILL
RETURN TO SERVICE A SIGNIFICANT NUMBER OF THE PRESENT SCHOLARSHIP
DEF AUL TERS.

 

 

 

 

 
 

Po

-3-

I WOULD. NOW LIKE TO TURN MY PRESENTATION TO HOW THE NHSC PROGRAM IS
PRESENTLY INVOLVED IN TREATING AIDS PATIENTS.

MY FIRST HANDOUT SHOWS A LISTING’ OF THE 30 STANDARD. METROPOLITAN
STATISTICAL AREAS (SMSAS) WITH THE HIGHEST INCIDENCE OF AIDS CASES. THE
HANDOUT ALSO INDICATES THE NUMBER OF DESIGNATED. HEALTH MANPOWER SHOR TAGE
AREAS (HMSAS) IN THESE SMOAS, AND. THAT NHSC HEALTH CARE PROVIDERS ARE
PRESENTLY SERVING IN THESE AREAS.

AIDS PATIENTS REQUIRE A WIDE ARRAY OF MEDICAL, PSYCHOLOGICAL, SOCIAL AND
SUPPORT SERVICE THROUGHOUT THE COURSE OF THE DISEASE.- IN ADDITION TO
HOSPITAL CARE. VIRTUALLY ALL EXPERTS AGREE THAT AIDS PATIENTS REQUIRE A
COMMUNITY-BASED SYSTEM OF SERVICES THAT INCLUDES: A “CONTINUUM” OF CARE
WHICH INVOLVES COMPREHENSIVE "AIDS-SPECIFIC" AMBULATORY CARE SERVICES
PROVIDED. BY MULTIDISCIPLINARY TEAMS OF PHYSICIANS, NURSES, AND. VARTOUS
SPECIALISTS, WHO ARE FAMILIAR WITH AIDS AND TRAINED TO MANAGE AIDS
PATIENTS. THIS OONTINIUM OF CARE ALSO INCLUDES IN-HOME MEDICAL CARE:

 

SUPPORTIVE SERVICES: LONG-TERM CAREs SKILLED. NURSING SERVICES:
INTERMEDIATE FACILITY SERVICES: HOSPICE SERVICES: CASE MANAGEMENT
SERVICES - BASED. AT SPECIALIZED AMBULATORY CLINICS OR VOLUNTARY COMMUNT TY
ORGANIZATIONS: AND EMERGENCY RESIDENTIAL FACILITIES FOR THOSE AIDS
PATIENTS WHO CAN NO LONGER AFFORD HOUSING.

 

 

 
 

 

4-

IN MANY CITIES AND. COUNTIES, THE FULL CONTINUUM OF HEALTH CARE SERVICES
REQUIRED. FOR AIDS PATIENTS IS NOT AVAILABLE.” PRESENTLY THE NHSC IN
CONJUNCTION WITH THE OTHER PROGRAMS OF THE BUREAU OF HEALTH CARE DELIVERY ©
AND ASSISTANCE ARE ADDRESSING THE NEED. FOR PRIMARY CARE SERVICES THROUGH
THE PRIMARY CARE CENTERS THAT ARE LOCATED IN AREAS WHICH HAVE A HIGH |
INCIDENCE OF AIDS CASES. AT THESE CENTERS AND THROUGH THESE OTHER
PROVIDERS, AIDS PATIENTS ARE TREATED. IN THE SAME SYSTEM AS OTHER USERS.

"AS THE NUMBERS OF AIDS PATIENTS INCREASES, FINDING ADEQUATE NUMBERS OF
PHYSICIANS, DENTISTS AND OTHER PRIMARY CARE PROVIDERS WHO ARE TRAINED AND.
PREPARED. TO TREAT AIDS PATIENTS MAY BECOME A PROBLEM. SERVICE DELIVERY '
PROBLEMS IN THE INDIAN HEALTH SERVICE AND. THE BUREAU OF PRISON SITES
COULD. BE EVEN MORE ACUTE.

RECOMMENDATIONS

THE INCREASING NEED. FOR APPROPRIATELY TRAINED. PROVIDERS COMBINED WITH THE
DECREASING NUMBERS OF NHSC SCHOLARSHIP OBLIGATED PROVIDERS SUGGESTS SOME
COURSES OF ACTION FOR PROVIDING PROPER CARE AND IMPROVED. ACCESS TO
SERVICES FOR AIDS PATIENTS. THAT YOU MAY WISH TO CONSIDER.

 

 

 
 

 

~5-

RECOMMENDATION #1: INCREASED EFFORTS TO INFORM AIDS-PATIENTS ABOUT THE. |
AVAILABILITY OF PRIMARY CARE SERVICES THROUGH EXISTING FEDERALLY FUNDED.
PROGRAMS SUCH AS CHCs AND. MHCs.

RECOMMENDATION #2: STEPS SHOULD. BE TAKEN TO ENSURE THAT STAFFS OF CHCs
AND. MHCS ARE PROPERLY TRATNED. AND. PREPARED. TO PROVIDE PRIMARY CARE 70 HIV
INFECTED. PATIENTS AND TO DEVELOP AND MANAGE NETWORKS OF COMMUNITY
LINKAGES FOR OTHER FORMS OF CARE FOR THESE PATIENTS.

RECOMMENDATION #3: CONSIDER ALLOWING SPECIALISTS PHYSICIANS (NONPRIMARY
CARE PROVIDERS) WHO ARE CURRENTLY IN DEFAULT OF THEIR NHSC SCHOLARSHIP
SERVICE OBLIGATION TO SERVE THEIR OBLIGATION IN A DESIGNATED. AREA OR .
POPULATION GROUP WHERE THERE IS A HIGH INCIDENCE OF AIDS. THIS IS AN
OPTION THAT MAY BE MADE AVAILABLE UNDER THE SPECTAL REPAYMENT PROVISTONS
oF PusLic Law 100-177. |

RECOMMENDATION #4: CONTINUE TO SUPPORT THE. NEW FEDERAL AND STATE LOAN
REPAYMENT PROGRAMS. THESE PROGRAMS WILL ALLOW FOR PLACEMENT OF ADDITIONAL
NHSC PRIMARY CARE PROVIDERS IN HMSAS AND. FOR SERVING SPECI °OPULATION
GROUPS SUCH AS HIV INFECTED: PATIENTS AND. PATIENTS WITH AIDS.

 

 
 

 

r aSES BY STANDARD METROPOLITAN STATISTICAL AREA (SMSA) OF RESIDENCE AND DATE OF REPORT TO CDC

at

Year Ending Cumulative Total HMSAs1/ NHSC Providers2/

REA OF RESIDENCE 11/30/87 Since June 1981 Pcs! Dental MD/DO__—DDS
2w York, NY* 3230 11400 18 11 55 4
an Francisco, CA* 1591 4410 2 3 1 0
2s Angeles, CA* 1557 3847 12 1 15 0
ouston, TX 681 1539 2 1 0 0
ishington, DC* 710 1492 2 2 2 0
-ami, FL* 462 1321 6 2 39 2
2wark, NJ* 516 1205 4 - 12 0
1icago, IL 515 1130 17 1 91 0
llas, TX 544 1018 8 2 11 1
.Lladelphia, PA 473 966 7 4 19 3
lanta, GA* 329 760 il 2 24 0
ston, MA* 300 720 17 3 14 2
- Lauderdale, FL*4/ 266 610 - - 4 0
n Diego, CA* 316 608 8 3 18 0
rsey City, NJ 229 551 1 - 2 0
ssau-Suffolk, NY 214 546 - 1 0 0
attle, WA* 248 510 l 1 7 0
w Orleans, LA 226 456 9 4 5 1
nver CO 185 423 2 2 0 2
Lt » MD 202 415 7 4 29 1
P zach-Boca, FL*5/ 192 398 2 2 10 1
a, CA* 199 391 - 1 0 0
troit, MI 143 316 10 2 35 2
verside, CA 6/ 149 281 6 5 5 0
n Juan, PR 7/ 99 281 2 6 0 0
apa, FL 145 260 4 2 100 7
zerson, NJ 98 244 1 - 4 0
aneapolis, MN 101 227 3 2 2 1
1 Jose, CA 98 223 - - 0 0
ctland, OR 8/ 125 219 7 l 2 0
TOTALS... 169 68 508 3.27

Currently HRSA funded demonstration projects

Designated Geographic Areas, Population Groups and Facilities in the SMSA, includes HMSAs as of
December 31, 1987 (correctional facilities excluded)

NHSC obligated, volunteer and career health professionals and dentists. Health professionals
include MD/DO/nurse practitioners and other specialties.

Primary Care

Broward County

Palm Beach County

Riverside County

Al Puerto Rico

Cl mas and Washington Counties

 

 
 

 

unity Health Centers (CHC)/Migrant Health (MH) Activity in Selected Cities

 

Calendar Yr. 1986 FY 1987
/State No. CHC/MH Total Users MD's Dentists Sec. 330/329
York (Bronx & 17 267466 132.45 38.80 $22,133,771**
dklyn), NY
Francisco, CA 3 45707 12.85 8.10 4,526,291**
Angeles, CA 5 61050 33.72 6.92 8,044 ,620**
ston, TX No Data
hington, D.C. 2 26514 8.90 4.08 2 046,369
mi, (Miami Beach) FL 5 103673 45.07 11.65 11,961,425**
fark, NJ | Grantee in transition: will submit initial report for 12/87. 1,079,319
-cago, IL 6 56449 48.79 1.49 8,726 ,880**
Llas, TX 2 16429 4.28 4.30 1,981,979
Lladelphia, PA 5 61075 30.58 6.11 7 5256 433
lanta, (Decatur), GA 3 40437 35.33 4.35 6,875 ,662
ston, MA 6 57779 22.67 8.93 3,303 ,824
Dorchester & Roxbury)
« Landerdale, FL No Data
n o, CA 1 13483 3.62 1.40 471,637
rs vity, NJ 1 15591 3.97 0 1,094,100
if _tSuffolk, NY No Data
2a..Lle, WA 3 45997 16.07. 10.97 3,100,007
ow Orleans, LA No Data
enverc, CO 2 120799 53.67 13.33 8,492 ,240
altimore, MD 6 57582 27.32 9.78 4,433 ,720
est Palm Beach, FL 2 47802 20.81 5.62 2,977,854
naheim, CA | No Data
Jetroit, MI | 2 36849 23.10 5.63 4,186,762
tiverside, CA | No Data
3an Juan, PR | No Data
Tampa, FL | No Data
Paterson, NJ | 2 21629 11.38 2.51 664,300
Minneapolis, MN 1 6452 2.42 1.89 255 5694
San Jose, Ca No Data
Portland, OR 1 45758 8.2 5.95 2,697,039

**This indicates where a grantee was added in Fiscal Year 1987 but there would be no data
available for Calendar Year 86 reporting.

 

 
 

APPENDIX

 

 
 

 

TESTIMONY
PRESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC |
CLINIC/OFFICE CARE
January 13, 1987
Gerald Friedland, M.D.
Montefiore Medical Center

Albert Einstein College of Medicine
Bronx, New York

I am pleased to have the opportunity to appear before the Presidential
Commission on the Human Immunodeficiency Virus Epidemic and to share with the
Commission my observations about and recommendations for the Ambulatory Clinic
and Office Care of persons with HIV infection and AIDS.

AS an internist, and infectious disease specialist at Montefiore Medical
Center in the Bronx, New York, I have been involved personally in the
provision of care to HIV infected persons in the hospital and clinic setting
since 1981. I have also studied the transmission of the Human Immundeficiency
Virus among intravenous drug abusers, household contacts of persons with AIDS,
heterosexual sexual partners, infants born to mothers infected with the virus
and health care workers. I am a hospital based physician caring for a mostly
poor or indigent population in whom the major HIV infection acquisition risk
is intravenous drug use, Thus, my perspective is somewhat different from that
of a practicing physician caring for a more affluent population in the private
sector. To broaden my view, in preparation for this testimony, I discussed
the issue of office care with many private practitioners in New York City
whose practice is heavily weighted towards persons with HIV infection and
AIDS.

I would like to briefly make three observations:

First, the fundamental reality of AIDS is that it is a chronic progressive viral

illness of young people, slowly and cruelly robbing them, in their most

productive years, of their hopes and dreams, bodies and minds and ultimately

 

 
 

 

their lives.

Second, it is. somewhat artificial to divide the issues of care of AIDS
patients into sites and settings. The required care encompasses the entire
health care system and appropriate care must have as its components
comprehensiveness and continuity, in all settings, including the office and
clinic, hospital, home care agency, etc. As a general rule, AIDS uncovers all
of the flaws in the health care system.

Third, the sudden onset of the AIDS epidemic has left little time to
develop a rational’ plan for the delivery of care. Thus, with few innovative
exceptions, the existing system of care has been relied upon to provide for
a new progressive illness of young people occurring in epidemic proportions.

It is essential, in discussing any aspect of the health care of persons
infected with HIV,: to appreciate the prolonged and complex life course of HIV
infection. The requirements for health care and our ability to provide care
varies through this life course.

Initially, after acquisition of infection with HIV by only 1 of 3 routes,
blood, sex, or perinatally, patients may develop the acute retroviral
syndrome. This is an acute mononucleosis type illness which is self-limited.
This illness may be diagnosed as HIV infection if apppropriate diagnostic
studies are carried out in the office or clinic setting or it may not generate
the need for any care at all. It is not a part of HIV infection that usually
requires or receives any hospital care. A prolonged asymptomatic phase
follows which may last for 5 to 6 years. During this period of time health
care needs are minimal in the technical medical sense. During this period
voluntary testing may be performed and counselling before and after the test
is required in an office or clinic setting. If an individual has antibodies
to HIV he or she will likely undergo severe psychological stress and may
require counselling and psychological support for an extended period of time.

After an average period 4-5 years, those infected may begin to become

 

 
clinically ill. The initial illness is usually comprised of vague non-
specific complaints such as weight loss, fever, diarrhea and mild infections.
Most of these may be handled in the office or clinic setting; a few will be
more serious or even life threatening and require hospitalization, As the
immune system deteriorates progressively, over the ensuing years, increasing
illness will occur, resulting in the unusual opportunistic infections and
malignancies which are associated with and characterize the final phase of HIV
infection which we have called AIDS. Tragically, approximately 1/3 of adult
patients will also manifest mental deteriorationn, become progressively
demented and unable to care for themselves, During this period of time
increasing numbers of ambulatory office and clinic visits will be required and
multiple hospitalizations will occur. Also, a growing need for home health
care services and alternate levels of care rather than the acute care hospital
will occur. The complex requirements for technical medical care,
psychological support and social and community support must be organized,
usually at the initiation of physician or health care worker initially seeing
the patient in the office of clinical setting or upon discharge from the
hospital. Arrangements for home care, financial support, housing, family
support may be carried out in this setting. At any point in the illness
individuals may receive various forms of therapeutic and prophylactic
intervention and most patients are prescribed multiple drugs, often expensive
and sometimes difficult to acquire. The toxicity and unfamiliarity that we
currently have with these drugs require frequent office visits and careful
monitoring. Ultimately, arrangements for and counselling about terminal care
and even funeral arrangements must be made, appropriately with the help of the
primary care provider, often in the office setting. Finally, AIDS affects not
just individuals, but families, friends, colleagues and others. The primary

care of the patient often involves the provider deeply in counselling and care

of all of these other individuals.

 

 
 

 

All of these needs, to be appropriately met require the interaction of
multiple health care workers, best organized into a team structure either
formally or informally and consisting of physician, nurse, social worker at
its core. An expanded team of psychiatrist, nutritionist, home health care
workers, etc. is often required, It is extremely difficult for a single
physician provider to address these needs.

The organizational and financial structure of our health care
system is largely hospital and procedure based. Data on utilization of health
care resources is available largely for the hospital portions of care.
Financial reimbursement reflects this orientation and outpatient office and
clinic care is significantly under financed.

Although there is substantial information on numbers of hospital visits,
length of stay and’ the cost of hospital care for AIDS patients, such data is
not available for ambulatory clinic or private or office utilization. The New
york State Department of Health estimates that an AIDS patient requires 18
outpatient visits per year from the point of diagnosis of AIDS. The New York
City Department of Health estimates 38 visits per patient per year because of
the additional visits engendered by the use of AZT. In addition, New York
City estimates that-there are 5 outpatients being followed in the municipal
hospital system clinics for every inpatient. Last week there were 429
patients hospitalized in the New York City municipal hospital system and
therefore perhaps 2,808 patients being followed in the ambulatory clinics.
Approximately 1/3 of patients hospitalized in New York City are in the
municipal hospital system. It is currently estimated that there are 10,000
patients with AIDS in New York City and 78,060 patients of AIDS Related
Complex. There are no current ways of documenting this populations's current
ambulatory health care utilization.

The cost impact of health care for AIDS patients in New York State in

1986 is estimated to be $177,000,060. Of this, $167,000,000 was accounted for
|

 

 
 

 

by inpatient days and only $8,250,880 by the cost of outpatient visits, using
an estimated 18 outpatient visits per patient. By 1991 it is estimated that
the cost of health care for AIDS patients in New York State will be
$911,000,00@. This excludes the cost of long-term institutional and community
based carey Of this, close to $1,000,006,060, $852,500,0008 will be accounted
for by inpatient days and $58,000,680 by outpatient visits. Thus it is
estimated that currently only 5% of health care cost in 1986 is accounted for
by outpatient visits and 7% by 1991. 1

Thus clinic and office care appears to represent a small portion of the
total cost of care of HIV infected individuals. However, these figures are
gross underestimates of the actual situation for several reasons:

Firstly, because there is no uniform collection of data there is gross
under-reporting. Most office visits, among private physicians caring for AIDS
patients are not calculated into these figures and most hospital clinic visits
are not tracked.

Secondly, there is a gross under-financing and under-reimbursement of the
cost of clinic and office visits by the health care financing mechanisms.

Thirdly, a substantial portion of HIV infected individuals and AIDS
patients are not currently being seen on a regular basis in office or clinic
visits. This situation will likely change in the future as therapy becomes
more useful and available. Thus, the cost of ambulatory care is likely to

greatly increase in the future.

1
New York State Department of Health, Health Care Resource Requirements
for Health Care Patients In N.Y.S., 1986-1991, November 12, 1987.

 

 
 

 

In the clinic setting for those patients who are Medicaid eligible in New
|

york State the hospital based clinic will be reimbursed $60 a visit plus

capital costs. This schedule has been capped for 5 years despite rising
costs. At my institution it is estimated that an average clinic visit with an
AIDS patient costs’ at least twice to three times that amount in physician and
other provider time. It is instructive to look at the current financial
arangements for office and clinic visits. In the private sector most
physicians who care for AIDS patients charge approximately $65.00 per office
visit. Most insurance payers do not reimburse for outpatient visits. Thus
patients pay out-of-pocket for these visits. Some insurance plans will
reimburse for a portion or even all of outpatient visits although this
represents a minority of insurance provider plans. The practitioner then must
balance his or her’ needs to see the patient frequently with the patients
ability to pay, which diminishes over time as the illness takes its financial
as well as physical toll. The physician's office bill is often the last to be
paid and many practitioner's whom I've talked with have accumulated large
amounts of unpaid bills generated by the care of patients with AIDS. Of course
this office visit does not include the cost of medication which the patient
must often pay for out-of-pocket since many or most private insurance plans do
not reimburse for the cost of medication, It takes longer in a clinic or
outpatient visit to diagnose, treat, evaluate and counsel an HIV infected or
AIDS patient than it does almost any other category of patient. Thus, while
the patients themselves require more time than other patients, the
reimbursement system underfinances the care in the outpatient setting.

Several practitioners inform me that prior to the AIDS epidemic they were able
to see four patients per hour on a regular basis. They now see 2 patients per
hour. My own experience in our hospital clinic which cares for usually quite
ill patients in the outpatient setting is that for a regular clinic visit it

1

usually takes 45 minutes to see the patient. A brief medication renewal for

 

 
 

 

AZT make take 19-15 minutes.

Not a single private practitioners with whom I spoke will accept a
patient whose health care reimbursement is through the Medicaid system.
Medicaid in New York State will provide 7 to 8 dollars of reimbursement for an
office visit. Given the large amount of time that is required to see an
evaluate an HIV infected patient, it becomes prohibitive for a practitioner to
accept Medicaid and reimbursement.

very few\AIDS patients or HIV infected individuals qualify for Medicare.
The Medicare system requires two years of illness before becoming available.
Only 2% of AIDS patients in New York State are Medicare eligible, a not
surprising figure since the vast majority of AIDS patients will have expired
before two years. Many middle class patients whose resources become exhausted
turn to the public clinic system, which increasingly, in outpatient as well as
inpatient care, will bear the brunt of the AIDS epidemic. For poor patients,
the public system is already the only source of care.

It is essential to appreciate that the patterns of public and private
care vary widely geographically, related to the demography of HIV infection in
this country. For example, New York and San Francisco account for 25 and 9%
respectively of AIDS cases in the United States. The two cities differ in the
rate of cases per population, the proportion of patients per risk group race
and sex and the number of children with AIDS. The underlying factor related
to many of these differences is rooted in the large proportion of IV drug
users among New York City AIDS patients compared to San Francisco. In New
York approximately 58% of adult cases are IV drug users, while in California
only 2% of AIDS patients are IV drug users. A higher proportion of AIDS
patients in New York are derived from populations in which poverty,
unemployment, school dropout, inadequate. housing and transporation, family
disorganization and all of the other characteristics of poverty are the rule

rather than the exception. In addition, in areas of IV drug abuse there is a

 

 
 

 

much higher incidénce of AIDS among women and children. These populations are

often in poor health, have few resources or social support and many may indeed
|

be homeless.

For poor indigent intravenous drug abusers or other individuals in the
community in which intravenous drug abuse is prevalent such as the
heterosexual sexual partners of IVDA's, health care is almost exclusively
provided in hospital or community clinics which are public clinics and
ultimately government financed. These clinics are over crowded, underfinanced
and often inaccessible. Intravenous drug abusers are an elusive population
who are not health care seeking and often appear in the emergency room rather
than in the clinic for their health care needs. Conversely, middle class
patients, heavily represented by gay men, are very health aware and health
care seeking and are much more prevention oriented. Intravenous drug abusers
and gay men, however, share the enormous problem of inadequate access to
outpatient health care, but for somewhat different reasons.

An additional important factor which influences the provision of clinic
an office care is the unfamiliarity which many physicians have with the
strategies of caring for individuals who are infected with HIV. It is
remarkable that in, New york City, for example, the care of the majority of
patients who are in the private sector is in the hands of fewer than 26
physicians. This group of physicians, for reasons of personal interest or
commitment or geographic location, have taken on the burden of caring for the
vast majority of individuals in the private sector. Most physicians are
uncomfortable about taking on the care of HIV infected individuals, in part,
because of lack of knowledge of how to counsel about HIV positivity and risk
reduction, how to diagnose and treat complex infections, how to manage the
complex multi-disciplinary approach needed for care, how to deal with death
and dying and discomfort or unfamiliarity with IV drug abuse or homosexual

lifestyle. In addition, certain physicians are unwilling to care for AIDS

 

 
 

patients ‘in their private practices because of fear that AIDS will adversely

influence their practice. Because of geographic location, only a portion of

all of the hospitals outpatient departments and clinics care for the majority
of HIV infected AIDS patients,

The combination of underfinancing of care, and unfamiliarity with the
care of the AIDS patients has resulted in a small number of institutions and
physicians caring for the bulk of patients. This pattern in New York and San
Francisco is likely to be replicated in every U.S. city and community in the
future. Although, on the surface it may appear to be desireable to centralize
the care of AIDS patients because of special expertise required in fact, there
will be an exhaustion of individuals who are experts in the care of AIDS
patients. As the epidemic grows, the care must be spread more widely through
the health care system. There simply are not and will not be enough experts
to provide care for the increasing number of patients in areas of high density
of infection. In areas in which infection is beginning to appear, and will
increase in the future, familiarity must be rapidly developed.

It is well known that the primary care specialties such as internal
medicine and pediatrics have become less popular in the last decade among
graduating medical students. This is not just related to AIDS but related to
the difficulties of this type of lifestyle and its increasing unpopularity.
AIDS will accelerate this process so that there will be fewer and fewer young
physicians who will be interested in providing primary care services and this
will result in a dangerous situation in the future whereby there will be fewer
personnel resources to care for increasing numbers of patients.

Early on patients were well cared for by physicians working in the gay
community on a relatively small group of specialists physician researchers
based primarily in large medical centers. Up to now general internists and
family physicians have played a relatively minor role in the epidemic in most

areas of the country. Nevertheless given the burnout that involved physicians

 

 
 

are already experiencing together with the projected increase in the number of
AIDS cases there is rapidly growing need for more physicians who are educated
and willing to care for individuals with HIV related illness. A major concern
for the future is where will these physicians and other primary care providers
come from? Will the supply meet the demand and if not, who will care for the

increasing number of patients?

 

 
 

RECOMMENDATIONS

1) Data Collection - It is essential that mechanisms be developed for the

 

tracking of health care in the outpatient and clinic setting for HIV infected
individuals, At the present time data is woefully inadequate to precisely
understand the distribution of care, the cost of care, and the future
directions of care in the outpatient and clinic setting.

2) Education of Physicians - Knowledge of the diagnosis treatment and
prevention strategies in HIV infection must be spread widely throughout the
medical profession and among health care workers. It will not be possible in
the future for all of the outpatient or inpatient care to be sequestered in
the hands a small number of institutions or individuals. Physicians must be
educated widely about HIV infection. Mechanisms such as seminars by teaching
institutions, local medical societies and incentives for caring for HIV
infected individuals must be provided, Health care manpower issues must be
addressed. It may be essential to provide scholarships, for example, in the

form of National Health Service Corps to pay for medical school tuition and

 

other expenses in exchange for obligations thereafter in caring for AIDS
patients. AIDS must be incorporated more generally into the curriculum of -
medical schools, nursing schools and schools where other health care providers
will become the future generation of those caring for AIDS patients. Although
it is essential to develop AIDS specialists it also is essential to widely
disseminate knowledge of caring for HIV infected AIDS patients throughtout the
health care system.

3) Financial Incentives - Financial incentives must be provided for the care

 

of patients in the clinic and office. Reimbursement must be enhanced to
reflect the actual cost of caring for individuals, understanding that in the
ambulatory setting provision of care takes longer and is more complex. The

cost of services themselves should be paid for not just associated technology.

Private insurance must be made to shoulder a burden equally with the public

 
 

 

sector, incorporating into private insurance policies reimbursement for
ambulatory care. The Medicare system must be made more flexible so that more
individuals with HIV infection become eligible for these benefits.

4) Accessibility - A primary care model should be incorporated into sites
where HIV infected individuals are seen. This is particularly true in
indigent populations and among IV drug users. For example, methadone clinics,
jails, obstetrical and gynecologic clinics and prenatal clinics should be
provided with the resources to allow them to care for the primary care needs
of HIV infected individuals. These are the sites in which poor patients
encounter the system. As an example, methadone clinics can be used as
educational, diagnostic, and treatment sites for IV drug users rather than
sites where individuals come in only to receive their methadone and leave.
Further, a vast expansion of outpatient drug treatment facilities is
essential.

5) Innovative Office and Clinic Personnel and Systems - To shift the care of

 

patients to the outpatient setting it will be necessary to develop the use of
non-physician health care workers to provide for a great deal of the office
and clinic requirements. These include nurses, counsellors, physicians
assistants, etc. These health care workers will have to be recruited into the
field with fiscal and educational incentives. It is important, as the
epidemic proceeds, to develop disease prevention strategies which are
dispensed in primary care sites. These include counselling, attention to
physchosocial issues and the administration of drugs such as A2T, nebulized
pentamidine and the outpatient use of such strategies as intravenous infusions
and transfusions decreasing the requirements for expensive hospital
admissions.

The clinic and office aspects of health care in the HIV epidemic have

been relatively neglected. Emphasis has been placed, as is largely the case

in our health care system, on hospital based aspects of care. As the epidemic

 

 

 
 

 

grows it will be essential to shift increasing burden of health care to the
outpatient setting both in the private and public sector. We are currently
ill equipped to do this, lacking personnel, facilities and fiscal mechanisms
+0 support such a shift.

In this bleak and tragic epidemic perhaps AIDS may be the wedge, the
point of the lance, that will open our system and redirect it away from
expensive inpatient care and motivate us to more rationally, inexpensively,

responsibly and efficiently organize the outpatient sector.

 

 
 

 

Testimony given before the Presidential Commission on the Human
Immunodeficiency Virus Epidemic

January 13, 1988 ‘

Paul S. Auerbach, M.D.

Associate Professor of Surgery and Medicine

Director, Emergency Services

Vanderbilt University Medical Center

Medical Director, Division of Emergency Medical Services
Tennessee Department of Health and Environment

\

The comments and recommendations that I make to you this morning are
based upon the observations of myself and other highly qualified
Emergency Medicine specialists who represent the American College of
Emergency Physicians, physician directors of prehospital emergency
medical services, nurses, residents in training, and medical students
who care for patients in emergency departments.

The role of Emergency Medicine is potentially of great importance, for
there are over 80,000,000 visits by patients to emergency departments
in the U.S. each year. As has been emphasized repeatedly, with the
exception of surveillance of blood products, the major effort that
will control spread of the virus in this country 1s education.

Because the emergency department is an entry point for patients into
the health care system, the following recommendations overlap with
those of other specialty areas, and require that fundamental issues of
finance and entitlement to care be addressed in these areas.

1) Emergency Physicians have a duty to treat all patients, regardless
cof diagnosis.

2) Emergency Physicians should have an obligation to promptly report
tne presumptive diagnosis of AIDS or AIDS related complex to a

designated Health Department, with or without = confirmatory hIiV ‘t-st.
The Public Health Department must be significantiy empowered and
ase1lgned the appropriate manpower tro contirm cases tnd Generate @

trail or counseling for contacts of an inrectecé incividual.

3) Informed consent should be obtained prior to nonurgent
administration of blood products to patients in the Emergency
Department.

4) Emergency Physicians should have the right to test patients for HIV
status without their consent. Such testing should only be done
following a specific request based upon a documented exposure to a
body fluid. The purpose of this is to inform potentially exposed
health care workers of the HIV status of patients they have
encountered.

 

 
 

9) Emergency Physicians should generate data on the risks of exposure
to health care personnel in the Emergency Department and prehospital
Settings. This information should be used to counsel physicians,
paramedics, emergency medical technicians, and nurses about their
exposure during service in the field of Emergency Medicine.

6) Universal precautions should be adopted that will protect emergency
health care workers from blood and body fluids during patient care.
These include liberal use of gloves, masks, gowns, and eye shields.
The "Recommendations for Prevention of HIV Transmission in Health-Care
Settings" published by the CDC should serve ab resource document.

7) Physician testing for HIV status should not be mandatory, but
should be available on an anonymous basis. Pending data that suggest a
clear risk of physician to patient transmission, a physician infectadd
with human immunodeficiency virus should be allowed to continue in
normal patient care activities in the Emergency Department .|

8) The Emergency Medicine community should initiate a comprehensive
educational campaign to describe appropriate evaluation, cost-
effective management, and disposition of persons infected with human
immunodeficiency virus. This include essentials of diagnosis, common
complications, strategies for minimizing unnecessary testing and
hospitalization, and precautions about personal protection.

9) Because the Emergency Department 1s used by many individuals for
emergency and nonemergency primary care, it is a logical environment
for public health education. Effective methods of disseminating
information about controlling the spread of AIDS should be employed in
both waiting and treatment areas within the Emergency Department.

10) Each hospital must provide consultants on call to the Emergency
Department who will evaluate and provide care, including
hospitalization, for AIDS patients without regard to financial status.
Every hospital should have a commitment to inpatient care for the AIDS
patient or a prearranged protocol for appropriate transfer to another
facility.

li: Unless a nospital is designated as a special AIDS care faciiity
the aistribution of AILS patients should allow nospitals to maintain a
normal mix on the inpatient service. This will maintain a normal
patient mix in the, Emergency Department.

4

 

 

 
 

 

12) The medical community must support drug rehabilitation programs.
However, we must rapidly identify and respect the limitations of drug
rehabilitation and focus upon controlling spread of the disease among
persons hopelessly addicted to intravenous drugs. Distribution of
Sterile needles to drug addicts has been proposed to control spread of
immunodeficiency virus, as it has been fairly well established that
needle sharing increases the incidence of HIV seropositivity in
intravenous drug users. Difficulty obtaining needles does not appear
to be a significant rate limiting factor for the use of illicit drugs.
It should be determined promptly whether distribution of sterile
needles will decrease needle sharing. If so, we must confirm that such
a public health effort will not increase the number of new drug
addicts. America must face the fact that allowing AIDS to run rampant
in the drug addict population will have a direct and irreversible
effect upon the general population, particularly infants of addicts
and youthful converts to habits of substance abuse.

13) HIV testing 1n an of itself has not been proven to provide
personal protection against acquisition of the virus. Testing should
be used as an epidemiological tool, to monitor the spread of the virus
and the efficacy of immunization, and to guide clinical decisions
about care based upon the prognosis of the patient.

14) A person with a confirmed diagnosis of AIDS who does not have
other insurance coverage should be granted Medicaid. Medicaid
reimbursement should realistically reflect health care costs.
Outpatient fees must be adequately reimbursed to discourage
unnecessary hospitalization. The issue of entitlement to health care
un the United States must be debated until resolved. Meaningful
government funding to support clinical care will be required to allow
physicians and institutions to accept the challenge of caring for AIDS
victims.

Finally, I urge the members of this Commission to make a report to the
President of the United States which recommends that Congress aprroac::
this 1ussue as if they were making a declaration of war. If there are
questions to be answered, the ttudiss must rt designec, asztignes, anc
competed quicki;. Our legislators must oe eaucatéd so tnat tney fully
realize the responsibilities they carry for the aevelopment of
programs and appropriation of funds. Time is of the essence, and we
all must appreciate the urgent nature cf a comprehensive response to
the HIV epidemic.

 

 

 
 

 

children’s hospital |
national Medical CeNtEL 11: suctcaw avetive, ww. waStiNGTON.o¢ 20010 @ (202) 745-5000

 

DEPARTMENT OF CHILD HEALTH AND DEVELOPMENT, GEORGE WASHINGTON UNIVERSITY
CHILD HEALTH CENTER @e RESEARCH FOUNDATION OF CHILOREN’S HOSPITAL

TESTIMONY ON THE CARE OF HIV-INFECTED CHILDREN

Before the Presidential Commission on the Human Immunddeficiency Virus Epidemic

January 14, 1988

Statement of

Dorothy Ward-Wimmer, R.N.
Immunology Clinical Specialist

Children’s Hospital National Medical Center

 

 
 

 

Good Afternoon, Mister Chairman, members of the Presidential Commission
on the AIDS virus epidemic. I am Dorothy Ward-Wimmer, R.N., Immunology
Clinical Specialist and the nurse coordinator of the AIDS Care Team at
Children’s Hospital National Medical Center in Washington, D.C. I thank you
for this opportunity to speak on behalf of the children infected with Human

Immunodeficiency Virus.

As of December 21, 1987, 736 cases of Pediatric AIDS have been reported
to the Centers for Disease Control (CDC), although the real number of HIV-
infected children may be as much as 10 to 30 times higher. It must also be
noted that adolescents are not represented in this statistic. Surveys to

establish the rate of infection in this population are only beginning.

Most new pediatric infections are the result of perinatal transmission.
77% of children with AIDS have parents with high-risk behaviors such as
mothers who are drug abusers themselves or their sexual partners. Children

may also acquire the infection through contaminated blood, illicit sex, and
though rarely, breast milk. Since 1985, when screening of blood and blood
products began, the trend has been away from new transfusion-related cases.
Only 15% of pediatric infections are transfusion related, and 5% are
hemophiliacs. Nationally, 54% of the children are Black, 24% Hispanic and 218%
White. Current trends indicate that the percentage of Blacks and Hispanics is
increasing. The statistics are limited in that they do not reflect the
complexity of the needs of these children and their families, all of whom

¢

require medical management, advocacy and social services.

 

 
 

 

Whitman-Walker Clinic, Inc.

1407 “S” Street NW ¢ Washington, DC 20009 « (202) 332-5295

Testimony by

Jim Graham, Administrator,
Whitman-Walker Clinic, Inc.

accompanied by Peter Hawley, M.D., Medical Director
Whitman-Walker Clinic, Inc.

before the

Presidential Commission on the
Human Immunodeficiency Virus Epidemic
Washington, D.C.

January 13, 1988

9:30 a.m.

Ce

"in a seuss Ga

 

 

 

 

 

 

THE NEW HOME OF THE WHITMAN-WALKER CLINIC

 

 
 

 

My name is Jim Graham, and I am the Administrator of
Whitman-Walker Clinic, Inc. I am accompanied by our Medical’
Director, Peter Hawley. \

We appreciate the opportunity to testify, as a
community-based medical clinic, on outpatient care issues
relating to AIDS. We commend the Commission for setting up
these hearings on these important aspects of the disease.

Facing a life-threatening disease under any
circumstance is a profound experience. Doing so, however,
without a network of support, or without shelter, private
insurance, money in the bank, or employment - obviously
makes that experience all the more difficult and compelling.

These are the people who most need - and most
frequently use - the services provided by Whitman—Walker
Clinic. 50% of our caseload of more than 400 persons with
AIDS report monthly incomes, at the time of intake, of $500
or less.

Whitman-Walker Clinic is one of a number of
organizations, located in major urban areas throughout the
United States, all of whom have played important roles in
responding to the care needs of Persons with AIDS. Like
many other organizations, Whitman—Walker Clinic began its
AIDS services when the disease was first identified - which,
in D.C., was in early 1983. At that time, the Clinic had
existed for_10 years, providing diagnosis and treatment for
sexually-transmitted diseases and alcoholism as well as
other services. As a gay and lesbian agency with a medical
capability, AIDS was obviously of deep concern to us from
the time'the first cases were identified in D.C. Today,
Whitman¢Walker Clinic has a full-time paid staff of 43, and

‘more than 1,000 volunteers.

In these three days of hearings, testimony will be
presented from a whole range of caregivers: hospitals,
emergency rooms, hospices, outpatient clinics, nursing homes
and other institutions. These agencies clearly play a
critical role in AIDS.

However, as structured, these hearings give
insufficient attention to the significant, indeed historic,
response to AIDS which has come from community-based
agencies such as our own. In the continuum of care for
AIDS, only a relatively short time is typically spent by
persons with AIDS in institutionalized settings, such as
hospitals or hospices. The lion's share of the time spent
with AIDS, and many of the needs associated with the
diséase, occur outside of that setting. These needs have
required innovative and extensive assistance.

f

‘N
1

 

 
 

 

|
|
When the history of this disease is finally recorded,

the role of the volunteer will be very near the heart of the
story. Relying Significantly on volunteer energies
Supplemented by supervision and support by paid staff,
agencies such as Whitman-Walker have filled the gaps in our
health care system that otherwise would have resulted in
untold human misery,

I do not know how much longer we can rely on volunteer
resources as a substitute for an effective and compassionate
public response. I don't know when the privately-donated
dollar, which has given us so much of our ability, will
become less available. From almost four years experience as
Clinic Administrator, I do know that the private sector -
principally in the form of community-based organizations -
has made the critical difference in terms of the response to
AIDS. |

|

Relying i a even mix of local government support and
private donations, Whitman-Walker Clinic has developed
medical services which attempt to fill important gaps in the
health care system. Let me briefly describe those medical
services. All statistics are for calendar year 1987.

I. AIDS Evaluation Unit: Medical Evaluation and Testing
for AIDS Symptoms. (In 1988, our AIDS Evaluation Unit
will become a satellite clinic for the AIDS Outpatient
Clinic to be established at D.C. General with HERSA

Demonstration Grant funds.)
“a

144 sessions: 393 total patients (total visits 531)
259 new patients
; . Ver
New Patients: : oy
W a ten os

\
20% - symptomatic (AIDS or ARC) ——~=
36% ~ lymphadenopathy syndrome “
44% + asymptomatic

534 - White
41% - Black
54 ~- Hispanic
1% + Other
|
94% ~ Male

6% - Female

 

 
 

 

If.

Itt.

IV.

HIV Antibody Testing: Whitman-Walker principal AIDS

.Testing Site for D.C. Metropolitan Area.

(5,831 tested since June 1985)

3,406
3,406
3,111

12.22%

1.5%

82%
182%

72%
224
6%

Tested
Pre-test Counseling
Post-test Counseling

Positive (Note: About 67% of those tested
self-identify as gay or bisexual males).

Persons identified with AIDS symptoms

Male
Female

White
Black/Latino
Other

AIDS Risk Reduction with V.D. Clinic Patients:

301 -
301 -
183 -
31% -
9% ~

Total
(with

HIV Antibody Tests Given

Pre-test Counseling

Post-test Counseling

Positive Tests

Persons Identified with AIDS Symptoms

Number Counseled

or without HIV Antibody Test): 1,379

Dental Unit for HIV-infected Persons
(in operation since September 1987):

16 Unit Sessions

41 Patients in 58 Visits

53% - White
31% -— Black
6% - Other

 

 
 

 

V. Sexually Transmitted Diseases: Dramatic Decline
7
Comparison Of 1982 to 1987:
|
e 602 decline in number of patients seen

e 83% decline in number of rectal gonorrhea cases

e 60% decline in frequency rate in rectal gonorrhea
cases a

e 66% decline in number of urethral gonorrhea cases

e 17% decline in frequency rate in urethral gonorrhea
cases

57% decline in number of new syphilis cases.

In order to respond to the varied needs of Persons
with AIDS, Whitman-Walker Clinic services include in
addition to our medical program:

® support services — counseling, home-care,
"buddy" system, legal, assistance obtaining
government. benifits

e housing - six houses with a capacity of 37 persons

e education and prevention programs aimed at those
at greatest risk, e.g. one-on-one outreach to
I.V. drug users, male and female prostitutes,
and sexually-active gay men.

For all the fears about the transmission of AIDS, AIDS is
still clearly spreading among these persons.

In D.C., the number of AIDS cases is growing very
significantly every year. There is no leveling off of the
disease here. We need increased public funding in order to
respond to these needs. Providing services to people with
AIDS is a public problem not capable of solution entirely by
private resources.

Today, there are Federal jdollars for education, for
counseling and testing in association with the antibody

test, for minorities, for IV, and other substance abusers,

But other than the comparatively limited funds from the
HRSA demonstration grants, there is no Federal funding
available to support the types of care that organizations
such as ours provide. What that means is that out of a
Federal AIDS budget in FY88 of nearly one billion dollars,
only about $24 million is being spent on direct patient care
services. |

 

 
 

 

We need localities to-wake greater use of section 4176
Medicaid waivers whereby Medicaid dollars could be used to
support AIDS services such as home care. At present, I
believe only New Mexico and New Jersey have obtained these
waivers, though other states have applications pending.

Finally, AIDS brings a strong spotlight to bear on the
many inadequacies of our Nation's health care system. We
must not lose sight of the fact that we are dealing with
very fundamental problems. We have discovered, painfully
and first-hand, what it is like to be poor and sick in
America. We know the problems in obtaining benefits in
order to survive, even for a short time. Once obtained, we
know the inadequacies of the existing benefits. It is very
hard to find good in this horrible tragedy. But hopefully,
what may result from AIDS are more humane and responsive
programs not only for persons with AIDS - but for all of our
citizens who are sick and in need of help.

 

 
 

 

RESUME

Jim Graham
2039 New Hampshire Ave. N.W.
Washington, D.C. 20009
(0) 332-5295
(H) 462-6866

Employment

March 1984 to present. Administrator, Whitman-Walker
Clinic, Inc., 1407 S Street, N.W., Washington, D.C.
20009.

1981 - 1984. Attorney, Office of the Executive
Director, Pension Benefit Guaranty Corp., 2020 K
Street, N.W., Washington, D.C. 20006.

1975 - 1981. Counsel, Committee on Governmental
Affairs, U.S. Senate, Washington, D.C. 20510.

1978 - 1982. Adjunct Professor of Law, Georgetown
University Law Center, Washington, D.C. (Teaching the
Regulated Industries seminar.)

1980 - 1982. Professorial Lecturer, Department of
History, George Washington University, Washington, D.C.
(Teaching the History of Federal Regulation.)

1974 - 1975. Associate, Carliner & Gordon, Attorneys at
Law, 1511 K Street, N.W., Washington, D.C. 20005.

1974. Law Clerk, Mr. Chief Justice Earl Warren (Rtd.),
U.S. Supreme Court, Washington, D.C.

1972 —- 1974. Graduate Fellow, then Staff Attorney,
Institute for Public Interest Representation,

Georgetown University Law Center, Washington, D.C.
20001.

1971 — 1972. Supervising Instructor, University of
Wisconsin Law School, Madison, Wisconsin.

 

 
 

 

II. Community Activities

Whitman-Walker Clinic
-President, 1981-84.
-Chairman, The AIDS Foundation, 1983-84.
-Board Member, 1979-84.
~Secretary, 1980-81.
Member and Treasurer, Board of Directors, National AIDS
Network, 1987 -

Member, Board of Directors, P Street Festival, Inc.
1984 & 1985

Member, D.C. AIDS Task Force, 1983 -~
Member, AIDS Task Force, D.C. Board of Education, 1985-

Member, AIDS Committee, Metropolitan Washington Council of
Governments, 1985 -

Member, The Mayor's Advisory Committee on Resources’ and
Budget, 1983-84

Iil. Education and Certification
LL.M. Georgetown University Law Center, June 1973.
J.D. University of Michigan Law School, May 1971.
B.A. Michigan State University, June 1967.

Admitted to the practice of law, District of Columbia,
(1973); United States Supreme Court (1978).

 

 
 

 

Testimony Before
Presidential Commission on the Human .

Immunodeficiency Virus Epidemic \

January 13, 1988

 

ee

—_——e

Given by Wilma Bulkin, M.D., Medical Director
Beth Abraham Hospital Hospice

Bronx, New York 10467

Mr. Chairman, members of the committee, I appreciate
very much this opportunity to present my views and
experience in caring for AIDS patients.in Hospice. Recent
literature suggests that there are fundamental questions
regarding the feasibility and affordability of caring for
AIDS patients in Hospice. My comments will specifically

address these issues.

The Beth Abraham Hospital, a 504 bed Skilled Nursing
Facility in the Bronx opened its Hospice in 1983. As you
know, Hospice is a program dedicated to providing palliative

care and support services for terminally .ill patients

 

 
 

 

non-AIDS patients die before admission, we can assume that
the relatively young age of AIDS patients makes acceptance
of death so much more difficult. Secondly, 20% did not come
under care for a variety of reasons including
inappropriateness of the referral and going to other
programs for services. Lastly, another 15% are on a waiting

list for admission.

The waiting list of AIDS patients reflects largely
a@ifficulties in reimbursement. Since the beginning of its
operation the Beth Abraham Hospice has run large deficits
($200-$400,000/year) primarily as a result of the
unavailability of Medicaid coverage. Nearly 70% of our AIDS
patients are drug abusers. Seventy-five percent of our AIDS
patients have only Medicaid coverage. Until recently under
Hospice Medicaid regulations, no more than 20% of the days
of care can be reimbursed as inpatient care. However, if
patients have no home and require inpatient care, we provide
it. In 1986 and 1987, 88% of the days of care for AIDS
patients had to be provided on the inpatient unit.
Fortunately, on December 22nd the President signed the
Budget Reconciliation Bill which included a provision to

remove AIDS patients from the 20% inpatient maximum

 

 
      
  
    
  
   
     
        
          
          
    
   
         
        
   
 
       
  

 

calculations. The financial impact of this bill is such
that the Hospice will be able to double its rate of intake
and substantially decrease its waiting list. We applaud the
efforts that got this significant.provision passed.

However, our reimbursement difficulties are not
entirely over. The current rates of reimbursement are $346
per inpatient day and $79 per home care day. Actual
1986-1987 costs trended for 1988 indicate that a rate
increase to approximately $450 inpatient day and $120 per
home care day would be more appropriate. Several factors
contribute to these increased costs including
pharmaceuticals and supplies. The most significant
additional costs are the result of increased nursing ‘and
social services. Generally, the AIDS homosexual or drug
abusing patient not only has the catastrophic nature of the
disease to deal with, but also the social-family
complexities of drug addiction and/or homosexuality. I
would urge that there be a review of current rates and that

a specific AIDS case supplement be added.

It is a reasonable speculation that the repeal of the

    

20% limitation on inpatient days, plus an increase in the

 
 

 

Hospice per diems would. vastly improve: the financial
feasibility of caring for AIDS patients in Hospices.
Further, it is reasonable to assume that this would produce
savings of acute inpatient days. In a review of our AIDS
patients requiring institutional care we estimate that over
$500,000 was saved by providing inpatient Hospice . care

instead of inpatient acute hospital care.

Hospice care for AIDS patients has been limited
despite the progressive and uniformly fatal nature of the
disease. Aside from the financial barriers just discussed,
this is largely attributable to anticipated fear and a lack
ef education. An education program preceded -patient
admission at the Beth Abraham Hospice to familarize the

staff with issues in the care of AIDS. -

The education for staff actually working in the Hospice
included a two month program utilizing the AIDS team experts
of Montefiore Medical Center, including lectures on. the
cause and course of the illness, and infection control
guidelines by the cpc. The "Household Contact Study"
performed at Montefiore, was emphasized showing that there

has been no disease transmission by casual contact.

 

 
 

Psychosocial . issues related to the risk factors were
|
explained and spiritual concerns of families and patients

dealing with the illness were addressed.

|
|
Education for staff working in the Nursing Home

included 2 1/2 hour session for all personnel. Patients
were also invited to attend. The session was video taped so
it would be viewed by those that were not able to be there.
The lecture included the rationale for accepting AIDS
patients into the Hospice program. The same issues
discussed in! the Hospice staff education program were
included. A spokesman from the Gay Men's Health Crisis of
New York City jrelating his own experience with AIDS was also

presented. This was followed by an open discussion.

The final step was the networking of the Medical
Director with other health professionals involved with
caring for AIDS patients. Rounds at other AIDS units in the
City were made and the Medical Director continues as a
member of the AIDS team at Montefiore Medical Center to

allow for continuity of care from the acute care setting to

the Hospice.

 
 

 

Continuing fear of transmission among staff was not a
major issue. However, several significant care problems

arose which differed compared to other Hospice patients:

1. inability to provide home services because of the
severity of dementia and incontinence and in many
instances the absence of supportive household members
or no home at all;

2. continued drug abuse of patients and others in the
household,

3. increased nursing, medication, psychosocial needs; and

4. stress on staff was intensified, most likely as a result
of the young age of the patients and the complexity of

the psychosocial needs.

Hospice care of AIDS patients is feasible, humane, and
cost effective, but their problems require special attention
and program modifications if Hospice care is to be provided
for the substantial and growing AIDS population.

In closing, I would like to recommend:

1. That Hospice care be fostered as a highly sensitive,

 

 
 

 

humane, and cost-efficient mode of care for terminally
ill AIDS patients. /

That the resource planning “and development for Hospice
services take into account a very substantial increase in
demand soon to follow the recent release from the 20%
maximum inpatient requirement for AIDS patients.

That a review of inpatient and home care per diem rates
be adjusted by an AIDS-case supplement to reflect the
increased cost for the care of AIDS patients.

That the severity of dementia and incontinence, the
unavailability of trained home care workers, as well as
the absence of supportive and care-taking family and
friends requires a greater availability of inpatient
Hospice services.

And lastly, that with careful staff education it is
possible to provide Hospice care to AIDS patients ina
general Hospice setting, rather than on isolated AIDS

Hospice units.

Thank you very much for this opportunity to present my

views.

 

 
 

PUBLIC HEALTH OBSERVATIONS DERIVED FROM
THE MULTICENTER AIDS COHORT STUDY
OF HOMOSEXUAL MEN

Presented by:

Harold M. Ginzburg, M.D., J.D., M.P.H.

Chief, Epidemiology Branch

AIDS Program

National Institute of Allergy and Infectious Diseases
National Institutes of Health

Bethesda, Maryland 20892

for:
{

Presidential Commission on the
Human Immunodeficiency Virus Epidemic

January 13, 1987

 
 

 

Admiral Watkins, and other distinguished Commissioners of the

Presidential Commission, my colleagues and I would like to thank
you for providing me the opportunity to present our clinical |
research data and public health observations to you. Before I
commence with an overview of the results of our studies I should
like to indicate that I am the Chief, Epidemiology Branch, AIDS
Program, the National Institute of Allergy and Infectious
Diseases, the National Institutes of Health and I am the
government project officer of the multicenter AIDS cohort studies
of homosexual men, the study that I am going to discuss today; by
training and experience I am an epidemiologist, a physician and
an attorney. Prior to accepting my current position 18 months
ago, I had been with the National Institute on Drug Abuse for
more than a decade, conducting research on the effectiveness of

the various drug abuse treatment modalities.

As you‘are aware, NIAID is the lead Institute at NIH for studying
HIV infections and AIDS. While the AIDS Program is approximately
two years old, a number of studies have been ongoing for over
four years. The largest single study designed to provide
information about the natural history of HIV infection is the
prospective multi-year multi-center AIDS cohort study generally
known as the MAC study; it commenced in 1983. To place this in
an historical perspective, in that year only approximately 1200
cases of AIDS were reported to the Centers for Disease Control.

Also, this study was conceptualized, designed and implemented

 

 
 

 

prior to the identification of HIV as the causative agent of
AIDS. Only four years ago, the early clinical course of the
presumed infectious process was not well understood. The NIH
made a commitment for a major effort to understand that illness,
and continues to devote an important level of resources for that

purpose.

The original reports of the acquired immunodeficiency syndrome
were in 1981. By the following year, 1982, it was clear that
non-gay men and women could become ill and die of this illness.
Many of those infected were noted to have shared biological
Fluids with individuals who also became ill. The Centers for
Disease Control (CDC) and the NIH recognized the need for
epidemiologic studies to study this problem. As a result, there
are currently a number of studies examining various aspects of
HIV infection and its sequelae.

|
At the end of 1982, the National Cancer Institute (NCI) and the
National Institute of Allergy and Infectious Diseases (NIAID)
with assistance from other Institutes, designed a study to try to
determine the modes of transmission and understand the mechanisms
of action of the causative agents. The need to identify the
organism or organisms and vectors of transmission are necessary
for the development and implementation of successful prevention,

treatment and rehabilitation programs.

 

 

 
 

 

The contracts for the MAC study were awarded in September, 1983.
During the recruitment phase of the study, from April 1984
through March 1985, 4955 homosexual and bisexual men from the
Baltimore, Chicago, Los Angeles and Pittsburgh areas, volunteered
to participate. These men are not paid for their time. They
believe that they can be of great assistance to our understanding
of HIV infection and AIDS. After more than six semi-annual
visits we have successfully followed in excess of 80 percent.
Without their cooperation and mutual encouragement, we would have
no information and conclusions to offer you today and, we would
not be able to continue this study for an additional four years.
It is important that their role and contributions are publicly

recognized.

A certificate of confidentiality was issued by the Alcohol, Drug
Abuse and Mental Health Administration (ADAMHA) to protect the
data collected in this study from subpoena by local, state,
federal and administrative courts for use in administrative,
civil or criminal proceedings. Such protection is extremely

important to ensure the high quality of the data.

Other than sexual orientation, the only eligibility criteria were
that the research participants had to be more than 17 years old
and give informed consent. The only exclusion criterion was a
prior diagnosis of AIDS. Study participants were recruited

through general publicity, announcements in the gay press,

 

 
 

meetings and forums, and word-of-mouth‘communication in the gay
community. Parenthetically, the latter was the most effective
means for recruitment and is probably the best means for sharing
information and: educating individuals who are at risk for
infection or disease. At each semi-annual visit the research
participants are interviewed, examined and they provide
biological Fluids for immediate analyses as well as preservation
in local and national repositories. The questionnaires ask about
past and recent medical history, medicinal and recreational drug
use, travel to high-prevalence areas, specific sexual practices,
and any changes in these practices. At the more recent visits
additional questions are added to the routine questionnaires;
more recently we have inquired about condom use, response to
educational materials, and the development of neurologic and

i

on

psychiatric symptoms.
“% pt Ques -”-
\ é
The median age of all participants at entry into the study was 32
years; ninety-five percent are white, 76 percent were employed
full-time and 87 percent had attended at least some college

(highest in the Los Angeles research participants, lowest in the

Pittsburgh recruits).

This past year we have begun to actively seek out and enroll more
non-white participants; it is anticipated that we shall beable
to enroll an additional sample of non-white men during a six

month period. This sample will be an extremely important one for
. J

4

 
 

 

Yen

assessing the effectiveness of education programs among

homosexual men, especially in non-white communities.

The median age of the research participants’ first homosexual
intercourse was age 17; the median age when regular homosexual
intercourse began was age 20. Approximately one quarter of the
men had had more than 500 homosexual partners in their life-
times: less than a quarter had had fewer than 50 homosexual
partners. Sexually active homosexual men significantly reduced

their number of sexual partners as the knowledge of HIV infection

and AIDS became known.

More than sixty percent of these men reported at least one
episode of gonorrhea; more than one in five an episode of
Syphilis. More than ninety percent were found to have antibodies
to cytomegalovirus; approximately 2/3 had evidence of hepatitis B

virus core antibody or surface antigen.

At the time of enrollment in the study, no participant was aware
that they were infected with HIV; the HIV antibody test was
unavailable. Using stored sera from the research participants,
we determined that 37*0f those enrolled in the study had
antibodies to HIV at the time of enrollment. The factor most
strongly associated with prevalent HIV infection according to a

multiple logistic regression model was rectal trauma.

 

 
 

 

|
There is a definite need for HIV education programs, independent

|
of the availability of HIV antibody testing facilities. However,

. . . i . . . . .
when an individual notices the presence of certain clinical signs

|

and symptoms often associated with HIV disease, undue anxiety and

|

concern may occur unless the individual has access to a HIV

antibody testing facility. Symptoms reported to occur in some
persons who subsequently developed AIDS were frequent among HIV

seropositive men (12.9 percent) but were reported in 8.4 percent

!

of seronegative;men as well. Generalized lymphadenopathy was
|

observed significantly more often in seropositive men (48.8

|

percent) compared with seronegative men (11.4 percent).
|

|

A history of intravenous drug use prior to admission to the study

was relatively uncommon; four percent of the seronegative and

|

fourteen percent of the seropositive research participants

admitted to such an activity at least once in the two years prior

|

to enrollment in the study. Those participants who reported
|

sharing a needle and syringe (drug paraphernalia) in the five
|

years prior to entry into the study have a seropositive rate that

|

is almost double that of those not reporting sharing drug
|
paraphernalia (65 percent vs. 37 percent).
|
|
|

Cocaine was used by 49 percent of the research participants in

'

the two years priior to enrollment in the study; nearly two-
|

thirds of those using cocaine used it in conjunction with sexual

|

activities. The seropositivity rate among those participating in

|
|
|
|
|
|
|
|

 

 
 

 

,
’
if f

the study who had not used cocaine was approximately 29 percent;
those who used cocaine, but not at the time of sexual activities
was approximately 37 percent; those that used cocaine
concurrently with the sexual activities had an overall HIV
seropositive rate of 57 percent, nearly twice that of those that
did not use cocaine at all. Use of beverage alcohol and
“marijuana are also positively correlated with increased rates of
HIV seropositivity but not with progression to AIDS after
infection. In general, use of psychoactive substances appear to

be surrogate measures of risk taking behaviors and disinhibiting

behaviors.

The consumption of beverage alcohol has decreased over time in
both seropositive and seronegative men. Nineteen percent of the
seropositive men and 16 percent of the seronegative men reported
consuming at least two drinks a day at the time they entered the
study. Two years later, these percentages were 12 and 11
percent, respectively. Use of marijuana has also decreased over
time in both seropositive and seronegative men. Thirty-six
percent of the seropositive men and 20 percent of the
seronegative men reported any weekly or more frequent marijuana
use in the six months prior to the time they entered the study.
Again, two years later, these percentages were 26 and 16 percent,
respectively. Thirty six percent of the seropositive men and 3l

percent of the seronegative men reported smoking cigarettes.

 

 
 

 

During the first six months of the study 3.8 percent of the 2507

homosexual men participating in the study became infected with
HIV; they seroconverted and produced antibodies to HIV. Of the
men who did not’ engage in receptive anal intercourse within six
months before baseline and in the six-month follow-up period,
only 0.5 percent (3/646) seroconverted to HIV. By contrast, of
men who engaged: in receptive anal intercourse with two or more
partners during each of these successive six-month intervals, ll
percent (58/548) seroconverted. No HIV seroconversions occurred
in 220 homosexual men who did not practice receptive or insertive
anal intercourse within twelve months before the follow-up visit.
On multivariate analysis receptive anal intercourse was the only
Significant risk factor for seroconversion to HIV, the risk ratio
increasing. from 3-fold for one partner to 18-fold for five or
more partners. ‘Furthermore, data for the two successive six-
month periods show that men who reduced or stopped the’ practice
of receptive anal intercourse significantly lowered their risk of
seroconversion to 3.2 percent and 1.8 percent, respectively.
Eight percent of the research participants seroconverted during a
two year period.

The highest attack rate for seroconversion was among men who
reported practicing both receptive and insertive anal-genital
intercourse. The attack rate among men who reported practicing
receptive but not insertive intercourse was 3.6 times higher than

among men practicing insertive intercourse alone although those

 

 

 
 

 

practicing insertive intercourse only reported 38 percent more

partners. The rate of seroconversion among individuals who
practiced both receptive and insertive intercourse was
approximately 2/100 person-years; for individuals practicing
receptive but not insertive intercourse it was approximately
1/100 person-years; for individuals practicing insertive but not
receptive intercourse it was approximately 0.25/100 person-years;
for individuals practicing neither insertive nor receptive anal
intercourse it was less than 0.1/100 person-years. Only two men
who reported not practicing anal-genital intercourse in the 12
months prior to the first antibody positive visit seroconverted.
One of these men could have been exposed within 6 months of the
actual development of HIV antibodies. Seroconversion was
positively correlated with the number of partners and inversely
correlated with the relative frequency of condom use. The
seroconversion rate among those who did not have their partners
use condoms at all and had nine or more partners during the prior
year was almost twenty times the rate for those who had the same
number of partners but all partners were r@quired to use condoms.
Thus, the attack rate for becoming infected with HIV was
significantly lower among men who reported using condoms with all
their partners. Receptive anal intercourse accounted for nearly
all new HIV infections among the homosexual men enrolled in this

study.

 

 

 
 

 

Annual incidence rates for the development of AIDS for

individuals who' do not know the year of infection are estimated
to be 2.6 percent for asymptomatic men; 3.2 percent among men who
had lymphadenopathy at their first visit, and 8.6 percent among

those who entered the study with HIV-related symptoms.

The following factors were associated with an increased risk of
developing AIDS among HIV seropositive men: first, a history of
sex with someone with AIDS or in whom AIDS later developed;
second, a reduced number of T-helper lymphocytes and an increased
number of T-suppressor lymphocytes; third, a higher serum titer
of cytomegalovirus antibody and; fourth, a lower serum "level" of
HIV antibody. It is important to note that an increased number
of T~suppressor lymphocytes, a decreased number of T-helper
lymphocytes and an increased level of antibody to cytomegalovirus
are almost certainly markers of disease progression rather than
determinants of disease. As cell-mediated immyn ify declines,
reactivation and systemig infection with cytomegalovirus

infection is common, stimulating the production of specific

antibody to cytomegalovirus.

Behavioral changes have been demonstrated in the MAC study
participants. During the period April 1984 to March 1986 the
biannual self-reported sexual activities data indicate that there
was a dramatic increase in celibacy (from 2 - 12 percent) and

monogamy (12 ~ 27 percent) and an overall decrease in the total

10

 

 
 

 

number of sexual partners. The proportion not practicing
receptive anal intercourse increased. from 26 percent to 49
percent. Use of douches/enemas has declined markedly. The use.
of condoms with either anal or receptive sex doubled over the
course of the two years, but still less than one-third reported
using condoms with anal sex. “The direction and magnitude of

reported changes in activities varied modestly when stratified by

) ; , .
race, age, city, education or HIV antibody status.

During the latter part of 1985, the Pittsburgh research
participants were invited by mail to learn their HIV antibody
results. Sixty-one percent of the men accepted the invitation,
nine percent actively declined; the remainder did not respond.
There were no significant differences in demographic, behavioral
and attitudinal characteristics or actual HIV seroprevalence

\

between the men who accepted and those who declined. ‘ However,
there were significant demographic differences between the men
who responded to the invitation and those who did not. Those
that did not respond to the invitation (almost all fontinued in
the study) were younger, non-white or less well-educated. The
most frequently cited reason (90 percent) why a wanted their
results was to determine if they had been infected with HIV. Of
those who declined, 30 percent cited concerns about the
psychologic impact of learning about a positive antibody result

as being the most important reason for their decision to decline.

The most frequently selected contributing reason for declining to

ll

 

 
 

 

|
|
|

learn the results (48 percent) was the belief that the test is
|

not predictive ef the development of AIDS. Eighteen percent

believed that the test is inaccurate and 19 percent expressed
|

concerns about confidentiality. These findings clearly have
|

relevance to the design and implementation of HIV screening

programs. |
|
|

The men participating in the Pittsburgh cohort were surveyed
|
concerning their attitudes and use of condoms during the six
month period May to December 1986. Sixty-five percent reported
|

{
at least one episode of anal intercourse during the six month

|

prior to the survey however, we are unable to determine the HIV

|

serologic Status of their sexual partners. Twenty-four percent

reported half or more of their sexual partners were anonymous.

Although a majority endorsed the belief that condoms can reduce

|
the spread of AIDS, 62 percent stated that they never or hardly

ever wore a condom during anal intercourse in the previous six
months and 64 percent stated that their partners never or hardly

ever wore condoms during anal intercourse. Eight percent of the

men reported a sast experience of condom breakage but, the
majority indicated this happening once. Five percent reported a
past experience of condom slippage, usually before ejaculation;
but again most (60 percent) related that this was rare or
happened only once. Factors involved in the underutilization of
condoms in this population may be related to the following

reported perceptions: first, condoms spoil sex (22 percent);
12

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]
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]

|
4

 

 
 

 

second, purchasing condoms is embarrassing (18 percent); third,
using condoms turns off partners (16 percent); fourth, condoms
are not readily available (22 percent); and, fifth, condoms are
used only by straights (26 percent). The underutilization of
condoms by these sexually active homosexual men is probably not
related to deficits in knowledge as 91 percent identified
receptive anal intercourse as the highest risk sexual activity
for the transmission of the AIDS virus. Another factor in the
failure to use condoms may be the mental status of the individual
immediately prior to or during sexual activities as 35 percent
reported that they were high on alcohol or other psychoactive
drugs with half or more of their partners. Finally, the
underutilization may relate to the relatively low incidence of
AIDS in Pittsburgh; sixty percent of the group did not personally

i

know someone with AIDS.

-
The public health observations that emerge from this study may
appear to be nothing more than common sense statements of
discretion and reason. They reflect the changing behaviors that
have occurred among the research participants. As HIV infection
spreads, and as more and more of the participants personally have
contact with HIV patients, behaviors can be expected to continue

to change.

It is noteworthy that a number of factors which are associated

with the risk of HIV infection (frequency of anal-receptive

13

 

 
 

 

|

|
intercourse, number of sexual partners) are not associated with
; . a

disease progression, once a person is infected. This study does

provide the scientific basis and the statistical power to
|

validate the following observations.
(1) The decrease in unprotected sexual activity among this
population;of homosexual men is significant. However, as
the number | and rate of infected individuals in a community
increase, the relative probability of having a sexual
encounter with such an individual increases even if the
overall sexual activity decreases. For instance, an
individualjwho had 50 different partners a year when the
prevalence jof HIV infection in his community was one percent
may be at equal or greater risk in having 5 partners when
the prevalence of HIV infection in his community 1s 50
percent.

(2) While 'the rate of new HIV infections has decreased
dramatically, HIV infections continue to occur among those
who persist in engaging in rectal intercourse. Personal
knowledge of an HIV-ill individual seems to have a positive
effect on behavior change. Being exposed to a patient with
AIDS appears to be a powerful motivator to alter one's
behavior. |
(3) While insertive anal intercourse may be less of a risk
factor than receptive anal intercourse, either activity can
result in infection, especially if no condom is used.

(4) The regular use of condoms provides a significant degree
of protection’from infection with HIV; it does not provide
an absolute protection.

!
(5) The use of disinhibitors such as alcohol and marijuana
may be associated with increased impulsive sexual activity
and the decreased associated use of condoms; excessive use
of any psychoactive substance may place an individual at
risk for HIV infection.

|
(6) The usé of psychoactive stimulants like cocaine, by
homosexual men, was associated with an increased risk of
becoming infected with HIV, especially if the stimulants
were used at the time of sexual activity.
(7) Those individuals who do not use condoms have developed
rational excuses for not using them; education must be
intensive and still may not be totally effective.

|

14

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!
|
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|

 

 
 

 

(8) These studies demonstrate the value of education
interventions, independent of HIV antibody testing, and the

need for additional primary prevention and education
programs.

15

 

 
 

 

The initial findings of the MAC study have appeared in a number
of professional] journals; copies of the more significant
publications have been submitted to the Commission.

16

 

 
 

 

APPENDIX II

 

 
 

 

 

HOME CARE ASSOCIATION OF NEW YORK STATE, INC.
840 JAMES STREET SYRACUSE, NEW YORK 13203 TELEPHONE (315) 475-7229

A voluntarv association to foster and strengthen home health and related support services.

i

Date: May 7, 1987

To: Workgroup on AIDS Medicaid Rate
Felice Armignacco
Roberta Brill
Elizabeth Davis
Yvonne Lavoie
Richard Pellegrini
Maryann Burke
Janet Starr

From: Timothy Burgers

Subject: Report of AIDS Time Study Results

!

The data from the AIDS Time Study in which nurses
participated in January and February, 1987, has been analyzed
and is summarized in Tables 1-3 which follow. A total of
eighty-eight nurses from six Certified home care agencies
participated in the two-week time study. The breakdown by
agency is as follows:

Agency No, of nurses

Monroe County Health Dept., Rochester 6
Montefiore Home Health Agency, Bronx 6
Nursing Sisters Home Visiting Service, Brooklyn 7
Visiting Home Health Services of Nassau, Lake Success 1
Visiting Nurse Association of Brooklyn, Brooklyn 22
VNS Home Care, New York 46
Total 88

The design of the time study did not allow for analysis of
the frequency of visits or for the total amount of case
management time needed by patients with the various diagnoses
because no provision was made for identifying individual
patients. The study did, however, provide valuable information
on the lengths of visits and the average amount of case
management time per visit.

As indicated in Table 1, the average length of the initial
visit varies significantly by diagnosis, with AIDS patients
requiring much longer visits, on the average, than patients in
the other diagnostic groups. Furthermore, the length of the

 

 
 

 

~

initial visit varied more widely between AIDS patients than
between patients within the other groups. Over ten percent of
the initial visits to AIDS patients during the study period were
more than two hours long, with one visit lasting over five _
hours. By comparison, only two percent of the initial visits to
patients in the "All Other Disease and Disability” category
lasted two hours or more. Other patient diagnosis groups with
initial visits lasting longer than two hours were: Terminal
Cancer (7%), and Chronic Cardio-vascular (2%).

Table 2 lists lengths of revisits for patients in each of
the diagnostic categories. As the table indicates, patients
with AIDS require longer nursing visits, on average, than other
patients do.

Case management time is presented in Table 3. Because the
time study did not track individual patients and lasted only two
weeks, it is impossible to determine from the study results the
total amount of case management time needed by the average
patient in each diagnostic category. Table 3 lists the average
amount of case management time per visit (including both initial
visits and revisits) for patients in each category. Once again
patients with AIDS require more time than do patients in any of
the other categories.

In a few instances nurses participating in the study did not
provide patient diagnosis codes for the case management time
they reported. This unassigned case management time -- less
than five percent of the total -- was distributed proportionally
among the diagnosis categories before the case management time
per visit was calculated. This assignment of time was necessary
to properly account for the total amount of case management time
during the two-week study period. Failure to do so would have
produced artificially low per visit figures.

A copy of the instructions for completing the time study and
a sample time study worksheet are enclosed for your information
and review. I will be happy to answer any questions you may
have regarding the time study or its results at the meeting on
Monday.

 

 
 

 

Table 1

Length of Initial Home Nursing Visit
for Patients in Various Diagnostic Groups

Diagnosis Number of Length of Comparison Comparison
Visits in Visit in to Overall to "All Other
Sample Minutes: Average Disease and

Ave. Median Disab." Ave.

AiDSs 34 81 70 150% 165%

Terminal

Cancer 14 67 60 124 136%

Chronic

Cardio-Vascular 59 53 55 98x 108%

Cerebral Vascular

Accident 15 52 60 96% 106%

Chronic

Respiratory 15 55 50 102%. 111%

All. Other Disease
and Disability 150 49 45 91% 100%

All Other, Incl.

Maternal & Child

Health, Health

Promotion, etc. 38 50 50 93% 102%

Overall 325 54 30 100% 109%

 

 
 

 

Diagnosis

AIDS

Terminal
Cancer

Chronic
Cardio-Vascular

Cerebral Vascular
Accident

Chronic
Respiratory

All Other Disease
and Disability

All Other, Inel.
Maternal & Child
Health, Health

Promotion, etc.,-

overall

Table 2

| Length of Home Nursing Revisits

t
t

| Number of
Visits in
' Sample

304
171
308

91

- 442

”

for Patients in Various Diagnostic Groups

Length of Comparison
Visit in to Overall
Minutes Average
Ave. Median

45 45 125%

40 40 111%

34 35 94%

35 35 97%

37 35 103%

35 30 97%

35 35 97%

36 30 100%

Comparison
to "All Other
Disease and
Disab." Ave.

129%
114%

1
t

97%
100%
106%

100%

100%

103%

 

 
 

 

| Table 3

Case Management Time per Visit
for Patients in Various Diagnostic Groups

Diagnosis Visits Total Case Mgmt Comparison Comparison
in Case Mgmt Time per to Overall to "All
Sample Time in Visit in Average Other Dis.
Minutes Minutes & Disab."
AIDS 338 17806 ' $3 147% 166%
Terminal
Cancer 185 7043 38 106% 119%
Chronic
Cardio-Vascular 367 12065 33 92% 103%
derebrl, Vascular
Accident 106 3446 33 92% 103%
, ¢
Chrohic. =
Respiratory 127 4120 32 89% 100%

All Other Disease
and Disability 1434 46444 32 89% 100%

All Other, Incl.
Maternal & Child
Health, Health

Promotion, etc. 182 7865 43 119% 134%
Overall Average 2739 98789 36 100% 113%

 

 
 

 

APPENDIX III

 

 
 

   

a

HOME CARE ASSOCIATION OF NEW YORK STATE. ING.
840 JAMES STREET, SYRACUSE. NEW YORK 13203 TELEPHONE (315) 475-7229

A voluntary association to foster and strengthen home health and related support services

REPORT OF AD HOC COMMITTEE ON AIDS AND HOME CARE

Committee Members:

John Dowling, MD, Chairperson
Ann Berson

Elizabeth Davis

Sr. Catherine Herron

Thomas O'Brien

Paper prepared by:
John Dowling, MD
Ann Berson
Elizabeth Davis

 

Presidert
ROBERTA S BRILL
Bronx

' Vice Presiger,
SINA D McFADDEN
Joxlyn

2nd vice Pres:cer'
JOAN GRISHKOT
Lane George

Secre'aty
NANCY FAIRBANKS
Giens Falls

Treasurer
ALBEAT F ANTONIN
Svracuse

BCARD OF DIRECTORS

VIRGINIA A ATTRICGE
Syracuse

CATHERINE BARBERA
samaica

RCSLYN BILFORD
Syracuse

JEAN BILOW

wae tee

T MOT#¥ 8O0BC
Svratuse

MARYA", BOLLES
Suan

wOAN TASERTA

“3a $oa°

EL. 2ZABET- OA.'S

Nea rum y

JOURN DOWLING MO
Mrsoa

MARION & SINER

Mow You Sty

waNE FIELOS

“Wack

4ERBER™ SOLTEN EID
New York C y

3. RAGIN A MANS ARAN
1 “9

NORMA -ENF noc
teat Gav Cove

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muEe Sab wah SEE NSH,
Sota.
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WILL AM & Mc'LWAINE
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VIL GIAM & PLUMB
wa vt at L199

“OOM s RESCO
Massadecua

JG ANNE AUDEN
fonecia

CAROLYN SCANLAN
A'oahy

ROBERTA SPOHN
New rere City
MAGGARET WALSH
Bayside

MPSBERT VEN
vee, 18 Dea 2
MAQVANN E BLOKE
Detu y Gree

 

 
 

 

The Board of Directors of the Home Care Association of New
York State appointed an ad hoc committee in October 1985 to develop a
report on AIDS and home care. The committee was charged to review
the history of AIDS, nationally and in New York State; to assess the
patient service characteristics and the cost impact experienced in
providing home care to AIDS patients; to determine the special
training. needs for home care providers, and to recommend state policy
and regulatory changes needed if HCA members are to continue to meet
the care needs of this very ill population.

A draft of this report was provided as background to members
for a special session on AIDS at the HCA annual meeting, June 4,

1986.

BACKGROUND: AIDS

|

Since 1981 when the acquired immunodeficiency syndrome (AIDS)
was first indentified in the United States (1)(2), over 24,000 cases
have been reported to the Centers for Disease Control (CDC) (3).
There were total of 8,012 cumulative cases. Fifty-five of New York's
62 counties have confirmed cases as of August, 1986 (3).

The United States experience has been that more than 90% of
AIDS cases occur in a small number of well defined groups (4). Over
90% of patients with AIDS are between the ages of 20 and 49 years
(5). In the report by Hardy and others, it was estimated that the
first 10,000 patients with AIDS reported in the United States
required about 1.6 million hospital days, resulting in an expenditure
of over $1.4 billion (5). They also estimated that approximately
$147,000 was being expended for the hospital care of each patient
with AIDS. This does not include costs of ambulatory care,
medication, lost income, or other costs such as community support
services. The fiscal impact of the cost of this infection is better
appreciated by compari g the hospital expenditures for AIDS with
those of other Sipedses.

a

aed

“ ’ It
Figure |

' !
BSTIMATED HOSPITAL DAYS AND EXPENDITURES FOR SELECTED CONDITIONS

| Days Expenditures
Disease (Million) (Billion)
AIDS 68 $1.

36
~$4
0

Lung Cancer

Motor Vehicle Accidents

Chronic Obstructive
Pulmonary Disease

mw =
a A = pe
e e e

N~ Tn

The above information for those conditions other than AIDS
is for 1980 (6).

 

 
 

Patients with AIDS present enormous challenges to their health
care providers, especially in a non~-institutional setting. Their
care needs are complex, long term, with acute and catastrophic
episodes. In the short time AIDS has been a recognized condition,
the cost of care is in a range comparable to other serious diseases

afflicting our society. See Appendix I.

The August 1986 from the New
York State Department of Health (3) contained the following

information on patient groups:

Figure 2¢ Patient Groups-New York State and Remainder of USA

August 18, 1986 -

Upstate Nyces Total NY USA *#s
excluding NYS
Prison Gen. Pop. -

Patient Groups* % % % % %

Homosexual / 12.0% 60.4% 61.5% 59.7% 78.8%
Bisexual

Intravenous/ 87.3% 26.4% 28.9% 30.5% 10.0%
(Iv) Drug User "

Hemophiliac 0.0% 4% 0.1% 2.1% 1.1%

Heterosexual Contact 0.0% 1.6% 2.0% 0.2% 1.5%

Blood Transfusions 0.0% 1.6% 0.7% 1.9% 2.1%

Pediatric 0.0% 1.0% 1.8% 0.8% 1.2%

Other 0.7% 8.6% 5.0% 4.8% - 5.3%

Total 100% 100% 100% 100% 100%

saan asa sss Sasa aaa

* Groups listed are ordered hierarchically; cases with multiple
characteristics are tabulated only in the group listed first.

** This tables includes 487 adult non-residents and 9 pediatric
non-residents.

*** estimate based on CDC data file that is not fully reconciled
with NYS data files.

AIDS Mortality-New York State and USA ;
August 18, 1986 ’

No. No.
Cases Deceased Deceased
New York State
Upstate
General Population 597 364 61.0%
Prison 276 207 75.0%
New York City 7426 ® 4198 56.5%
Total New York State 8299 4769 58.08
Scans | Sze aa
USA 23667 | 13272 56.1%
S22 S222 pots =

*Includes 487 adult and 9 pediatric non-residents.

 
 

 

Figure 3

1. TRAMSMESS TOW CaTecogtes
— MALES FEMALES
Since Jan} fumilative Since Jan} Gumulacive fined] “Gamlatina

ADALS/ADOLESCENTS | Member (8)
uorsenual/Oiseaual Rate «17S (20) isan (70) wanar—ish — ee as
t
(mn ihong trast} hi) aca) ath tye haa
nual nate ane IV Orug Abuser 570 (8) © 1867—(8) “470 ( , ose (17)
Nelevevesn eh Oleerder 6$ (1) 180 (th) 2 (0) 6 (0) 6? om os A
Trantfusten, Oleed/Compen ed ag) an 433027) Od Ly 93
, ants Ne (2) zr) $4 (10) 146 0=~«*)siS Cs? in

weil (i)

Sone of the Above _ wihd()) — 60 (il) 280 fil) 294 ta) =a
Sudtetal: Adults/Adelescents = 7
| 360 (100) =. 22085 (100) $67? (100) 1886 (100) «7927 «(100) «= 23467 = (100)

4 |

 

 

COULLOR EM
paneent Vha/Ceagalasion abbecaer 2 «¢$) 4 (8) 3 63)

arent with/at risk ef alos 43) (75) 138 «7 " *)

by $) (65) 136

' (86) 9

ransfusion, Boed/eapenents 9 (16) 30 (16) y (12) Ww? at) 16 Wa) 7 i
went_of tbe anges ! 2.4 6. iD 2) 8 ty 4 i)

; $7? (100) 183 (100) 60 (100) 189 =( 100) Ww? 6100) 344 «((100)

:

TOTAL 741) 222456 627 174§ 6044 2401)

These deta are provisional.

2. Cases with more than one risk factor other then the combinatians
listed in the tables or footnotes are tabulated only in the category

lieced first.

3. Includes 404 persons
wich AIDS or st risk far AIDS
riske who vere born in countries is which heterosexual!

ie believed to play a major role although precise means
have not yet been fully defined.
lecludes a11 patience under I} yeara of age at time of diagnosis.
Epidemiologic data suggest trenemiasion from an infected mother
co ber fetue or infant during che perinatel period.

who have had heterosexual contact vith 8 person
and SI! persons without other identified
trenspicesion

of tracsaission

we
ee

\
!
i

One of the serious shortcomings inherent in the data is that the
figures relate only to reported AIDS cases. There is not presently
available a nationally accepted diagnostic criteria for AIDS related
complex (ARC). Also, there is no national consensus a& to how individuals
who have confirmed seropositive blood tests for the Human T-Lymphot ropic
Virus-III (HTLV-III) should be identified for communicable disease control

purposes. Recently, CDC presented a classification system for infected

persons which is primarily applicable to public health purposes (8).

Human T-Lymphotropic Virus Type I11/Lymphadenopathy~Associated Virus
tually exclusive

Infections (HTLV-III/LAV) is classified into four mu

groups, as follows:

|
|
|
|

 

 
 

 

Group I. Acute infection
Group 11, Asymptomatic infection*®
Group III. Persistent generalized lymphadenopathy®
Group BV, Other disease

Subgroup A. Constitutional disease

Subgroup B. Neurologic disease

Subgroup C. Secondary infectious diseases

Category C-1. Specified secondary infectious disoases listed in

the CDC surveillance definition for AIDS+
Category C-2. Other specified secondary infectious disceses
Subgroup D. Secondary cancers¢
Subgroup B. Other conditions

® Patients in Groups I] and II! way be subclassif£ied on the basis of

a laboratory evaluation.
o Includes those patients whose clinical presentation fulfilis the

definition of AIDS used by CNC For national reporting.

The classification system allows for grouping patients infected
with HTLV-III/LAV according to clinical conditions. Changes can be made
as indicated by a better understanding of the natural history of the

disease.

‘

The Public Health Service (PHS) has developed a plan for the
control and prevention of AIDS by the year 2,000 (9). Its plan recognized
the state of the art since the isolation of the virus HTLV-III and
development of the blood test to detect evidence of infection by the
virus. Their statement of the problem is presented in its entirety.

Probles:

A. AIDS is a very serious, often Eatal, disease c db
HTLV-IIL, ‘ ’ e caused by the virus

B. The incidence of AIDS and infection with HNTLV-1II is increasing
steadily in the United Stetes.

C. More persons are known to be infected with HTLY-3II than ,have
become 111. The incubation period for AIDS in adults pay raage
froa 1 to 6 years or sore, and in infants from 6 months to §
years or sore.

D. Infected persons may be capable of transaitting infection for
many years, even though they may reasin asyaptosstic,

B. The sbility of MNTLV-JII to persist in the infected individual
results in s population of persons who easy be at risk for years

for developmont of sevore iliness.

F. HTLV-ILL infection is transmitted by infected sexual partaers
through exchenge of body fluids, through equipsent used to
adainister latravenous rugs of abuse, throug contaasinated
blood and blood products, snd from infected mothers to infants.
Members of all population groups Chus exposed are at risk,

G. No effective vaccine or therapy exists.

 

 
 

 

The PHS's action plans include continuing research efforts,
broad-scale information and education activities, affecting behavioral
changes for persons at risk. Developing an informed, knowledgeable,
educated general public, with particular emphasis on selected target
groups, is essential if the rapid spread of the disease is to be
controlled, pending availability or specific therapies.

The Health and Public Policy Committee, American College of
Physicians (ACP) and the Infectious Diseases Society of America (IDSA)
recently produced a position paper on the Acquired Immunodeficiency
Syndrome (10).

It "urges all physicians, surgeons, nurses, other medical
professionals, and hospitals to provide competent and humane care to all
patients, including patients critically i111 with AIDS and AIDS-related
cohditions. Denying appropriate care to sick and dying patients for any
reason is unethical."

The Ad Hoc Committee recommends that HCA endorse this position.

A great deal of home care is provided by a group not specifically
mentioned in the ACP/IDSA position paper -- the paraprofessionals. The
understanding and support of home health aides and personal care
attendants is essential if all seriously ill patients, including those
with AIDS, are to be adequately cared for at home. All in-service
education and training programs must recognize the specific educational
needs of this important group of health care providers.

In order for home care agencies to provide an adequate variety,
intensity and quality of services necessary to support these often
seriously ill patients, changes must be made in some of the present
regulations and reimbursement schedules.

REIMBURSEMENT ISSUES

In the fall of 1985, the New York City Health and Hospitals
Corporation (11) addressed the need for long term care services for AIDS
patients which raised the following program and policy issues based on the
idea that Medicare and Medicaid benefits and coverage available for
eligible patients in institutional and home settings should be extended
and expanded to assure the range and scope of chronic care services
necessary for the care of the AIDS patient.

|

Medicare coverage for skilled nursing facility care and home health
care is largely restricted to short term, post-acute care which is
insufficient to meet the chronic long term care needs of these patients.
Medicare does not provide for chronic care in the home, and, as such,

 

 
 

 

homemaker/personal care services are not covered and home health aide
services provided for are too limited in terms of hours and duration of
service to assure the amount of care necessary to serve the AIDS
patients. There is a need to provide an integrated and coordinated
service plan at home which combines skilled care including nursing,
therapies and home health aides and personal care/support services.

The Medicare hospice program benefit provides care to the
terminally ill and can be utilized to care for the AIDS patient. The
reimbursement cap, however, is too low to assure the amount of service
necessary. A higher reimbursement cap would help to assure services and
availability of this program. Consideration should be given to
establishing a categorical program benefit such as that provided under
the Medicare reimbursed End Stage Renal Disease program.

In New York State, Medicaid offers a chronic care program model
appropriate to the needs of many of the AIDS patients. In order to
provide home care services on a national basis, it will be necessary to
utilize waivers such as those provided for under the 2176 Home and
Community Based Services legislation. These waivers would allow patients
to be served in the home as long as the cost of care did not exceed the
costs of care in an institutional setting. The Katie Beckett case also
provides a program model which would assure services to the child with
AIDS, as this waiver allows for services at home to certain eligible
children without depleting the financial resources of the family.

There are gaps in coverage and programmatic limitations. The costs
of providing services must be addressed at the national level. The
federal government should move to develop a broader strategy of support
for long-term care services, especially for catastrophic illness
situations such as AIDS.

THE VNS HOME CARE EXPERIENCE

The Human Resources Administration (HRA) of New York City
announced, in January 1986, the initiation of a program of comprehensive
home care services for Medicaid eligible persons with AIDS and
AIDS-related complex (ARC) for the five boroughs. There are two major

components:

1. HRA AIDS Crisis Intervention Services. The crisis
Intervention Unit provides a single intake point for
home care services, provides an AIDS Helpline,
provides assistance with housing, and in applica-
tion for Medicaid or other income maintenance
programs.

 

 
 

 

 

2. Home Care Services. HRA of New York City has a
contract with VNS Home Care, a certified home
health agency (CHHA), to provide all Medicaid
services, as well as Home Attendant services and
continuous nursing care when indicated. Services
are provided through subcontracts with other CHHA's,
with home attendant programs and appropriate vendors
to assure an integrated program. VNS Home Care has
established an AIDS Administrative Unit which works
closely with the Crisis Intervention Unit. All VNS
staff are oriented to care of AIDS patients with a
core group having specialized training.

Patient Characteristics of Those Persons Receiving Home Care(12)

The growth in home care utilization experienced by VNS Home Care
for AIDS patients has been striking. VNS Home Care was providing services
to an active caseload of 56 persons in April 1985, and by May 1986, there
were 249 patients with AIDS receiving care. Patients are being admitted
to home care at a rate of 70-80 per month; 75% to the Acute Care Program,
14% to MCH/Pediatric Program, 10% to Hospice and 1% to Long Term Care.

40% of the patients are Medicaid eligible, 35% begin with some private
insurance coverage which is often inadequate and short term, and 15% of
the patients are opened as "free care." The following data are specific
to the Medicaid group:

- 78% male, 22% female

- 58% are in the 19-40 age group |

- 34% are in the 40-60 age group

- 4% are under 18 ;

- 1.2% are over 60 years

- almost 40% of the patients live alone, often
requiring 12 or 24 hour home health aide or home
attendant services '

- almost 50% are from the high risk group of drug abusers

- many live in unsafe areas of the city requiring escort
services for staff.

The severity of the illness is significant. Multiple systems are
often involved requiring intensive treatment and care for the AIDS patient
and complicated coordination with several physicians. A number of
patients are on experimental drugs and intravenous (IV) therapies causing

 

 

 
 

 

severe reaction and illness, e.g., seizures, chills, headaches,
hypotention, bleeding. Some are on IV therapy the rest of their lives
(such as DHPG(13) to prevent blindness). Staff training and updating on
current and new therapies are needed in providing safe care. Mental
deterioration, severe loss of weight, debilitation and the inevitability
of death create major emotional burdens for the patient, significant
others and family, as well as posing a challenge to staff in responding to
the psycho-social needs of all involved. Suicidal tendencies have to be
confronted and dealt with. .

The clinical status of AIDS patients is frequently changing,
requiring immediate adjustments in staffing, change in frequency of visits
and careful coordination of several care-givers. Evening and night
services, with security escorts, are needed and utilized. Daily and
twice-a-day visits by nurses are sometimes indicated. Organization of
care, provision of treatments, and planning for supplies and equipment
often mean extensive time in a visit, particularly the first visit.
Continuous care nursing and LPN services also are utilized.

Cost Impact

Costs of caring for persons with AIDS at home exceed the average
costs for patients in a certified home health agency. Those factors
influencing increased costs include the following:

- Additional training needed on an on-going basis for both
professional and paraprofessional staff;

~- Support groups for staff and more frequent case conference
needed}

~ Pre-discharge visit to the hospital to do adequate planning for
home care; '

- Increased time in coordination with family and/or significant
others as primary care-givers;

- Psycho/social supports needed;

- Increased time in coordination with multiple doctors,
hospital personnel, volunteer groups, vendor agencies and
other community linkages (case management) }

- Crisis response costs;

- Evening and night visits/on-call costs;

- Higher ratio of escort/security costs;

 

 
 

 

- Increase in visit time (average of 1-1/2 - 2 hours, range
from 45 minutes to 5 hours); and

- Free care costs - patients with inadequate insurance,
spend-down requirements for Medicaid.

In addition to these costs, there is need to consider premium pay
for home attendants and home health aides who often spend 8 to 24 hours
with a patient providing more complex care. These services have been the
most difficult to organize and to provide quickly and consistently.
Reliability, good judgement and additional training are essential in
providing safe care for AIDS patients.

Responding to the complex needs of the person with AIDS and ~
Organizing for comprehensive services has been and will continue to be an
important challenge. Persons with AIDS reflect the kind of very ill
patient home care providers must position themselves to provide with well
managed, coordinated and responsive care. The following characteristics

are some of those needed:

|

|

- The best and most current technical and clinical
knowledge and skills;

- The best case management skills and team approach to
meet the volatile and rapidly changing physical, psycho-social
environmental and economic needs of persons with AIDS;

- The best educational skills; and

- Organizational flexibility and the ability to respond quickly.
|
| RECOMMENDATIONS

|

I

The Ad Hoc Committee recommends that:

1. HCA endorse the position of the American College
of Physicians.

2. HCA Provider Agency members commit resources to provide
this, care.

3. HCA Provider Agency members organize to provide this care.

4. HCA act as a resource for training programs, information
and education materials.

5. HCA act to obtain changes in reimbursement policies to
result in adequate reimbursement for patients with
extraordinary Service needs.

Approved by the Board of Directors October, 1986.
| -10-

j

 

 
1.
2.

10.

ll.

12.

13.

REFERENCES

Pneumocystis Pneumonia ~- Los Angeles, MMWR 1981;30: 250-252.

Kaposi's Sarcoma and Pneumocystis Pneumonia Among Homosexual Men.
New York City and California, MMWR 1981; 30: 305-308. ;

AIDS Surveillance Monthly Update. Bureau of Communicable Disease
Control. N.¥.S. Department of Health, Albany, N.Y., August 1986.
—
Hardy A.M., Allen, J.R., et al: The Incidence Rate of Acquired
Immunodeficiency Syndrome in Selected Populations. JAMA 1985; 253:
|

Hardy, A.M., Rauch, K., et al: The Economic Impact of the First
10,000 Cases of Acquired Immunodeficiency in the United States.
JAMA 1986;255: j209-211.

Closing The Gap: Health Policy Interim Summary. Atlanta, Carter
Center, Emory University, 1984.

Evans, R.W. The Heart Transplant Dilemma. Issues in Science and
Technology. Spring 1986; VII: 91-101.

coc. Classification System for Human T-Lymphotropic Virus Type
III/Lymphadenopathy-Associated Virus Infections. MMWR 1986; 35:
334-338.

Public Health Service Plan for the Prevention and Control of
Acquired Immune Deficiency Syndrome (AIDS). Public Health Reports.
1986; 100. 453-455.

Position Paper. Acquired Immunodeficiency Syndrome. Health and
Public Policy Committee, American College of Physicians; and the
Infectious Diseases Society of America. Annals of Internal Medicine,
1986; 105: 575-581.

From a statement by Jo Ivey Boufford, M.D., President, New York City
Health and Hospitals Corporation in testimony before the Inter-
governmental Relations and Human Resource Subcommittee of the Com-
mittee of Government Operations, Hon. Ted Weiss, Chairman. Friday,
September 13, 1985; Subcommittee on Health and the Environment
Committee on Energy and Commerce, United States House of Representa-
tives. Friday, November l, 1985.

Elizabeth Davis, Vice President for Operations, VNS Home Care, New
York. Personal Communication, June 12, 1986.

DHPG (Syntex Corp.) (1,3 - dihyroxy~2-prpoxymethy1) guanine, an
investigational drug.

 

 
 

 

APPENDIX I

Costs of "Accepted" Therapies
Total Parenteral Nutrition $110,000/year/case
Maintenance Hemodialysis 25,000/year/case
Treatment of Hemophilia 10,000/year/case
Treatment of Cancer 30,000/year/case
Major Adolescent Psychiatric Disorder 185,000/year/case
Treatment of AIDS 40,000-140,000/case
Bone Marrow Transplant | 100,000/case__
60% Burn Patient Treatment 100,000/case
Coronary Artery Bypass Graft 25,000/case
Treatment of Variceal Bleeding 18,000/case

 

 
 

 

 

\Z_/EZ HOME CARE™

A nonprofit subsidiary of the Visiting Nurse Service of New York

TESTIMONY OF
PETER J. UNGVARSKI, M.S.N. (CAND.), R.N.,C.
CLINICAL NURSE SPECIALIST, HIV INFECTION

/ }
,

\
L REPRESENTING \j
THE VISITING NURSE SERVICE OF NEW YORK JCITY

BEFORE THE .
PRESIDENTIAL COMMISSION ON HUMAN IMMUNODEFICIENCY

VIRUS EPIDEMIC

JANUARY 13, 1988

 

VNS Caree350 Fifth AvenueeNew York, NY 10118-0110¢(212) 560-5952

 

 
 

 

DR. CONWAY-WELCH AND MEMBERS OF THE COMMISSION:

MY NAME IS PETER UNGVARSKI.: I AM A CLINICAL NURSE
SPECIALIST IN HIV INFECTION REPRESENTING THE VISITING NURSE
SERVICE OF NEW YORK (VNSNY) IN NEW YORK CITY, A VOLUNTARY,
NON PROFIT AGENCY AND THE NATION'S LARGEST PROVIDER OF
HOME CARE SERVICES TO PERSONS WITH AIDS. I WOULD LIKE
TO COMMEND THE COMMISSION FOR HOLDING THIS HEARING ON THE
CARE OF PERSONS WITH HIV INFECTION/AIDS, AN ISSUE OF VITAL

CONCERN TO ALL AMERICANS.

mo

THE IMPORTANCE OF HOME CARE FOR PERSONS WITH AIDS

THE HOME CARE COMMUNITY HAS RESPONDED TO THE GROWING
HEALTH CARE NEEDS OF PERSONS WITH AIDS BY DESIGNING SPECIAL
PROGRAMS AND ADAPTING CURRENT ONES TO MEET THEIR NEEDS.

HOME CARE IS ESPECIALLY APPROPRIATE AND EFFECTIVE FOR PERSONS

WITH AIDS BECAUSE:

1. ENABLES PERSONS WITH AIDS TO REMAIN IN FAMILIAR SURROUNDINGS,
THUS PROVIDING MAXIMUM EMOTIONAL SUPPORT FOR THEM AND

THEIR SIGNIFICANT OTHERS;

 

 
 

 

2. PROVIDES MAXIMUM INDEPENDENCE AND CONTROL OVER DECISION
MAKING IN THE LEAST RESTRICTIVE SETTING.

3. SIGNIFICANTLY IMPROVES THE QUALITY OF LIFE AND PROVIDES
THE OPPORTUNITY TO MAXIMIZE THE USE OF THEIR REMAINING
TIME; \

4. ALLOWS SIGNIFICANT OTHERS TO ACTIVELY PARTICIPATE IN
DECISION MAKING AND CARE;

5. PROVIDES AN OPPORTUNITY FOR CASE FINDING AND HEALTH
TEACHING IN THE COMMUNITY.

6. AND FINALLY, HOME CARE COSTS SUBSTANTIALLY LESS THAN
INSTITUTIONAL CARE.

THE VNSNY HOME CARE EXPERIENCE
IN 1985, THE HUMAN RESOURCE ADMINISTRATION (HRA) OF

NEW YORK CITy DEVELOPED PLANS TO INITIATE A PROGRAM OF

|

COMPREHENSIVE HOME CARE SERVICES FOR MEDICAID ELIGIBLE
|

PERSONS WITH HIV INFECTION/AIDS FOR THE FIVE BOROUGHS OF

THE CITY. THERE ARE TWO MAJOR COMPONENTS TO THIS PROGRAM:

1. HRA AIDS, CASE MANAGEMENT SERVICES WHICH PROVIDE A
SINGLE INTAKE POINT FOR HOME CARE SERVICES, AND PROVIDES
A HELPLINE, ASSISTANCE WITH HOUSING, AND APPLICATION
FOR MEDICAID AND OTHER INCOME MAINTENANCE PROGRAMS.

2. HOME CARE SERVICES, HRA OF NEW YORK CITY HAS CONTRACTED
WITH VNSNY,A CERTIFIED HOME HEALTH AGENCY, TO PROVIDE

HOME HEALTH CARE SERVICES.

\
|
|
|

\
I
|
|
|

 

 
UNDER THIS PROGRAM THE FOLLOWING SERVICES ARE PROVIDED:

1.

PROFESSIONAL NURSE ASSESSMENT, CARE AND CASE MANAGEMENT
BY A VISITING (PRIMARY) NURSE.

CONTINUOUS IN HOME SERVICES DEPENDING UPON THE CLIENT AND
SIGINIFICANT OTHER'S INDIVIDUAL NEEDS, THE OPPORTUNISTIC
INFECTION AND THE APPROPRIATE TREATMENT. THE VARIOUS
LEVELS OF CARE INCLUDE:

a. HOME ATTENDENT

b. HOME| HEALTH AIDE

c. LICENSED PRACTICAL NURSE (LPN/LVN)
Gd. PROFESSIONAL NURSE (RN)

SERVICE TIMES VARY FROM AS LITTLE AS FOUR HOURS, TWICE A
WEEK, UP TO AND INCLUDING TWENTY-FOUR HOUR, SEVEN DAY A
WEEK SERVICE.

PARENTERAL THERAPY AT HOME INCLUDING, BUT NOT LIMITED TO:
a. HYDRATION a

b. TOTAL PARENTERAL NUTRITION

c. DHPG

d. AMPHOTERICIN - B

e. PENTAMIDINE ISETHIONATE

MEDICAL SOCIAL WORK SERVICES

PHYSICAL, OCCUPATIONAL AND SPEECH THERAPY SERVICES
INTERFACING WITH THE PRIMARY PHYSICIANS AND HOSPITALS
WHEN REHOSPITALIZATION IS REQUIRED IN ORDER TO EXPEDITE

DISCHARGE AND RE-ESTABLISH HOME CARE.

 

 
 

 

7. SEPARATE TWO-DAY EDUCATIONAL PROGRAMS FOR
a. PROFESSIONAL STAFF

b. PARAPROFESSIONAL STAFF
|

SINCE INITIATION OF THIS PROGRAM IN JANUARY OF 1986, VNSNY
HAS RECEIVED REPFERALS ON 1,255 INFANTS, CHILDREN AND ADULTS
WITH HIV INFECTION/AIDS. SEE APPENDIX I. COMBINED WITH
OTHER PAYOR SOURCES VNSNY HAS SINCE 1986, PROVIDED HOME CARE

TO APPROXIMATELY 2,500 PERSONS WITH HIV INFECTION/AIDS.
|

| .

PRELIMINARY FINDINGS

1. EDUCATION IS NEEDED WITHIN THE HEALTH CARE COMMUNITY
ITSELF SINCE THERE EXISTS A NOTICEABLE KNOWLEDGE DEFICIT
REGARDING THE EXISTENCE OF HOME CARE SERVICES. I
FREQUENTLY FIND A MILIEU IN WHICH THE MIND-SET IS THAT
NOTHING extens BEYOND THE HOSPITAL DOOR.

2. HOME CARE rs NOT ONLY A NECESSARY BUT ALSO A DEMONSTRATED
VIABLE OPTION FOR LONG TERM CARE FOR PERSONS WITH HIV
INFECTION/AIDS.

3. OUR CALCULATED PER DIEM COST FOR 1986, EXCLUSIVE OF
MEDICATIONS \AND SUPPLIES WAS $81.40. THIS FIGURE
REPRESENTS ALLOWED BILLABLE COSTS TO MEDICAID.

4. STUDIES ARE NEEDED TO DETERMINE ACTUAL COSTS BASED NOT ON
THE DIAGNOSIS OF AIDS BUT UPON THE DIAGNOSIS FOR WHICH

THE CLIENT Is RECEIVING TREATMENT. FOR EXAMPLE THE

CLIENT WITH PNEUMOCYSTOSIS WILL REQUIRE LESS SERVICES,

 

 
 

 

MEDICATIONS AND SUPPLIES THAN WILL THE CLIENT WITH

CRYPTOSPORIDIOSIS.

VARIABLES WHICH ALSO IMPACT ON ACTUAL COST INCLUDE:

a. SPECIAL EDUCATION REQUIRED BY BOTH PROFESSIONAL AND
PARAPROFESSIONAL STAFF

b. PROFESSIONAL NURSE VISIT TIME AND CASE MANAGEMENT
TIME WHICH EXCEEDS THAT OF ANY OTHER DIAGNOSTIC
CATEGORY. SEE APPENDIX II.

c. ON-GOING SUPPORT GROUPS FOR STAFF |

d. SIGNIFICANTLY HIGHER NEED FOR ESCORT/SECURITY FOR
THE NURSES PROVIDING CARE.

e. SEE APPENDIX IIIf.

ALTHOUGH ONLY A FEW IN NUMBER, IT IS IMPORTANT TO POINT

OUT THAT HOME CARE IS NOT APPROPRIATE FOR ALL PERSONS

WITH AIDS WHICH NECESSITATES ALTERNATIVE PLANS FOR

LONG-TERM CARE. EXAMPLES INCLUDE:

a. HOMELESS PERSONS WITH AIDS (WHICH MAY BE PRESENT
AT THE TIME OF DIAGNOSIS OR OCCUR WHEN SIGNIFICANT
OTHERS, WITH WHOM THEY ARE LIVING, DISCOVER THE
DIAGNOSIS)

b. THE PRESENCE OF SEVERE DEMENTIA AND THE ABSENCE
OF A SIGNIFICANT OTHER

c. HOMES WHICH POSE A HEALTH THREAT NOT ONLY TO THE
CLIENT BUT ALSO TO THE HEALTH CARE WORKER SUCH AS

THOSE WITH NO RUNNING WATER, HEAT OR UTILITIES

 

 

 
 

d. HOMES IN WHICH OVERT DRUG DEALING/TRAFFICING CONTINUES

HOME CARE SERVICES CAN BE PROVIDED IN A VARIETY OF
SETTINGS. CURRENTLY THE STAFF OF VNSNY PROVIDES CARE

IN A VARIETY OF SETTINGS CALLED "HOME" INCLUDING SINGLE
ROOM OCCUPANCY (SRO) DWELLINGS (OFTEN REFERRED TO AS
WELFARE HOTELS) AND IN RESIDENCES ESTABLISHED FOR
HOMELESS PERSONS WITH AIDS, SUCH AS BAILEY HOUSE IN

NEW YORK CITY.

ONCE IN PLACE, A CLIENT IN THIS PROGRAM, WHEN REHOSPITALIZED
CAN BE DISCHARGED BACK TO HOME CARE, THUS REDUCING THE
LENGTH OF STAY IN AN ACUTE CARE SETTING.

HOSPICE CARE WHICH IS OFFERED UNDER THIS PROGRAM HAS

NOT BEEN EXTENSIVELY UTILIZED. IT APPEARS THAT THE
HEALTH CARE COMMUNITY AND POLITICIANS HAVE ARBITRARILY
DECIDED THAT THE MOST APPROPRIATE TYPE OF CARE BEYOND
THE HOSPITAL SETTING IS HOSPICE, THEREBY USURPING THE
RIGHTS OF PERSONS WITH HIV INFECTION/AIDS TO MAKE

THEIR OWN DECISIONS. WITH IMPROVED TREATMENT MODALITIES
FOR OPPORTUNISTIC INFECTIONS AND DISEASES, AND THE
INTRODUCTION OF ANTIVIRAL AGENTS, THE LENGTH AND QUALITY
OF LIFE FOR THIS POPULATION IS IMPROVING WHICH MITIGATES
THE CONCEPT THAT AIDS EQUALS IMMINENT DEATH. PERSONAL
EXPERIENCE HAS DEMONSTRATED THAT FREQUENTLY, PERSONS

WITH AIDS DO NOT CHOOSE HOSPICE CARE INFLUENCED

PRINCIPALLY BY THE YOUNG AGE OF THIS POPULATION AND

 

 
 

EE

HOPE-SYSTEMS THAT INCLUDE A BELIEF THAT A CURE IS

IMMINENT. Vw

RECOMMENDATIONS wy

1. CONSIDER THE USE OF EXISTING SERVICES WITHIN OUR HEALTH

CARE SYSTEM BEFORE DESIGNING NEW OPTIONS.

2. CONSORTIUMS SHOULD BE FORMED TO BRING TOGETHER HOSPITALS,
HOME CARE AGENCIES,COMMUNITY BASED ORGANIZATIONS ETC.
TO PROVIDE THE MOST EFFICIENT AND COST EFFECTIVE SERVICE ~

TO CLIENTS WITH HIV INFECTION/AIDS.

~ —_—

3. ‘RECOGNIZE HOME CARE AS A VIABLE OPTION FOR LONG TERM
CARE FOR PERSONS WITH AIDS WHICH HAS BEEN DEMONSTRATED

TO BE NOT ONLY APPROPRIATE BUT INEXPENSIVE.

4. CONSIDER COLLABORATIVE PROGRAMS, SUCH AS THE SERVICES

 

PROVIDED BY VNSNY PROVIDING HOME HEALTH CARE AND THE
AIDS RESOURCE CENTER OF NEW YORK CITY PROVIDING HOUSING

FOR THE HOMELESS PERSONS WITH AIDS.

5. DESPITE THE LAUDATORY RESPONSE IN STATES SUCH AS NEW
YORK AND CALIFORNIA TO THE BURGEONING NUMBER OF AIDS
CASES, THERE ARE STILL MANY OBSTACLES TO ADEQUATE FUNDING
FOR HOME CARE FOR PERSONS WITH AIDS. CURRENT MEDICARE
REQUIREMENTS NECESSITATE TWO YEARS' DISABILITY PRIOR

TO ELIGIBILITY. THESE REQUIREMENTS ARE TOTALLY INAPPROPRIATE

SINCE THE MAJORITY OF PERSONS WITH AIDS RARELY LIVE

 

 
 

 

BO

THAT LONG AFTER DIAGNOSIS. MEDICARE COVERAGE NEEDS

TO BE EXPANDED TO COVER PERSONS WITH AIDS UPON DIAGNOSIS.

MEDICARE AS CURRENTLY STRUCTURED, IS LARGELY RESTRICTED

TO SHORT TERM, POST-ACUTE CARE AND DOES NOT COVER

THE CHRONIC LONG TERM CARE FOR THE NEEDS OF THESE
INDIVIDUALS. CONSIDERATION SHOULD BE GIVEN TO ESTABLISHING
A CATEGORICAL PROGRAM BENEFIT SUCH AS THAT PROVIDED

UNDER THE MEDICARE REIMBURSED END STAGE RENAL DISEASE

PROGRAM.

THE PHENOMENA OF THE APPEAL OF THE HOSPICE MODEL OF

CARE IS THAT IT IS HOLISTIC IN APPROACH, MULTIDISCIPLINARY
INCLUDING SPIRITUAL CARE AND FOCUSES ON EXCELLENCE

IN SYMPTOM CONTROL. THIS PROTOTYPE WOULD IMPROVE

THE DELIVERY OF HEALTH CARE FOR ALL CLIENTS; WHATEVER

THE DIAGNOSIS AND WHATEVER THE HEALTH CARE SETTING

 

MIGHT BE. ADDITIONALLY THE HOSPICE MEDICARE BENEFIT,

AS CURRENTLY STRUCTURED, REQUIRING A PRIMARY CARE

GIVER, CERTIFICATION OF A LIFE SPAN OF SIX MONTHS

OR LESS, AND A TOTAL EXPENDITURE CAP OF $7,300 EXCLUDES
THE MAJORITY OF PERSONS WITH AIDS. A HIGHER REIMBURSEMENT
CAP AND WAIVER OF THESE REQUIREMENTS SHOULD BE CONSIDERED

SO THAT HOSPICE CARE IS AVAILABLE TO THOSE WHO SEEK IT.—

 

WHILE ALL ARE IN GENERAL AGREEMENT THAT THE BEST WAY

TO FIGHT AIDS IS THROUGH EDUCATION, THERE HAS BEEN

 

 
 

PO

 

LIMITED APPROPRIATION OF FUNDS TO ADEQUATELY EDUCATE
HEALTH CARE WORKERS. WITH THE CLIMATE OF COST
CONTAINMENT, MANY HEALTH CARE FACILITIES AND ORGANIZATIONS
ARE RELUCTANT TO, OR UNABLE TO PROVIDE THE EDUCATION
NECESSARY FOR HEALTH CARE WORKERS TO SAFELY AND ADEQUATELY
CARE FOR PERSONS WITH HIV INFECTION AND AIDS. THE
EDUCATIONAL PROGRAM CONDUCTED BY VNSNY AND FUNDED BY

HRA, HAS BEEN SUCCESSFUL IN NOT ONLY EDUCATING STAFF

TO THE PARTICULAR NEEDS OF THIS CLIENT POPULATION, BUT

HAS ALSO SERVED TO ELIMINATE THE FEARS AND MISCONCEPTIONS

SURROUNDING THIS DISEASE.

ONE LAST RECOMMENDATION I WOULD RESPECTFULLY SUBMIT,

IS THAT ALL HEALTH CARE PLANNING RELATED TO HIV INFECTION/AIDS
INCLUDE INPUT FROM PERSONS WITH AIDS AND THEIR SIGNIFICANT
OTHERS. AFTER ALL, WHO CAN BETTER ADVISE US OF THE

UNIQUE NEEDS OF THIS POPULATION AND THE EXPERIENCES

OF THIS DISEASE THAN THOSE WHO HAVE HAD TO LEARN TO

LIVE WITH AIDS.

I APPRECIATE THE OPPORTUNITY TO BE HERE TODAY TO DISCUSS

THESE IMPORTANT ISSUES AND WOULD BE MOST WILLING TO RESPOND

TO ANY QUESTIONS YOU MIGHT HAVE.

 
 

 

re

APPENDIX I

VNSNY AIDS MEDICAID PROJECT
SIGNIFICANT SURVEILLANCE DATA
JANUARY 1986 to JANUARY 1988

N = 1255
1. CASES BY SEX:
MALE = 77%
FEMALE = 23%
2. CASES BY AGE:
BELOW 18 = 4%
19-29 = 16%
30-39 = 49%
40-49 = 23%
50-59 = 6%
60 & OVER = 2%

3. ADULT CASES BY RISK BEHAVIOR:

I.V. DRUG USER = 41%
SEX WITH MEN = 36%
TRANSFUSION ASSOCIATED = 0.5%
SEX WITH PARTNER OF A

RISK GROUP = 2.5%

NOT STATED = 20%

 

4. PEDIATRIC CASES BY RISK CATEGORY:

CHILDREN OF I.V. DRUG
USING PARENT = 34%

TRANSFUSION ASSOCIATED 6%

5. CASES BY RESIDENCE:

MANHATTAN = 41%
BROOKLYN = 23%
BRONX = 20%
QUEENS = 14%

STATEN ISLAND = . 2%

 

 
 

 

CNOs Testimor

Testimony to the Presidential Commission on the Human Immunodeficiency

Virus Epidemic: Community Nursing Organizations (Draft 2)

Susan K. Riesch DNSc RN

University of Wisconsin-Milwaukee

January 13, 1988

 

 
 

 

CNOs Testimc

Ladies and gentlemen of the panel. The topic of my testimony
is Community Nursing Organizations known as CNOs. I! hope to convince
you that CNOs have the potential of being an important aspect of
community based care in the !prevention of the spread of HIV and in the
follow up of persons struggling with the effects AIDS. I hope to
convince you that CNOs should be accessible not only to Medicare
eligible individuals but also to Medicaid eligible individuals.

The reasons that I believe CNOs should be accessible to
Medicaid eligible persons with HIV are:

1. Nurses have demonstrated time and again that they provide
effective information and support programs for well people in the
community;

2. Nurses have- demonstrated that they can provide efficient
and compassionate care for ill individuals in the community within the
context of the family and based on patient centered goals;

3. Nurses have demonstrated that they can coordinate very
complex patient care. Nurses take into account the many and varied
facilities that provide,care for acute and chronically ill people. If
provided with a referrél from the primary physician, the nurse can
coordinate the day to day care required to enhance the quality of life
(and death), communicate regularly and refer back to the physician as
needed, and, in collaboration with social service providers, act as an
advocate for the patient in the multiple systems he or she encounters.

The major barriers to nurses providing this type of care is
payment. Nurses, in general, are not reimbursed directly for the care
they provide. Further, considering the rapidity with which AIDS

patients deteriorate, it makes more sense to provide a prospective

 
 

 

i

|
form of reimbursement for their care than a retrospective form. In

“CNOs Testimony

other words, a system is: needed to decrease: the "red tape" ‘of: -*~
reimbursement for the patient and the ‘careprovider. I guarentee that
we can manage care ‘in a well-coordinated manner and are worthy of the
reimbursement privilege I hope you will include in your final report.

Let me outline for you a brief history of CNOs.

_ Community Nursing Organizations

History and Forerunners

CNOs grew from a need for consumers to have direct access to
nursing services. Direct access means that if a client or patient
requires nursing care, he or she can obtain that care without a
prescription or other "middle person". I believe any individual
should be able to seek nursing care and have nursing care paid for by
a third party payor without a "middle person". I do not believe
nursing care should be physician prescibed, but, rather, physician
referred. |

|
Many times a patient or client presents him_or herself at some
i \ °

door of the health care system with a health problem, that, after
medical intervention has been obtained, requires nursing follow up.
In the long run, it’ is the nursing care needs that keep the patient in
the health care delivery system. To maintain a minimum quality of
life, sick patients: need a nurse to monitor their activities of daily
living and the tasks of their disease.

In the spirit ef providing direct access to nursing care and
as forerunners to CNOs, private nursing practices and nursing centers

where clients could obtain nursing care have "sprung up". I come to

you from one of the first and foremost of these centers. I directed

12

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]
i

 

 
 

CNOs Testimon

that center for 5 years and I have seen the gaps in payment for
community-based nursing care. I ° am not aware’ that these organizations
have targeted persons with AIDS, to. date. The major barrier to the
continued success of these practices and centers is payment for the
services. Payment is usually out of the client's pocket or provided
through grants and contracts. Though changing, state by state, in the
event that third party payment is available, it is through the
signature of a physician.
| The American Nurses’ Association worked closely with
legislators here in Washington to enact the Community Nursing and
Ambulatory Care Act (HR 1161 and SB 1910). It was signed into law in
1987. This legislation allows Medicare beneficiaries to enroll ina
CNO that provides all Part B services (except physician, x-ray, and
laboratory services) for a fixed, monthly payment equal to 95% of what
the Medicare program is currently paying for those same services.
Similar in concept to a Health Maintenance Organization, a CNO would
agree to provide all these services, including home health care, for
_ one monthly fee, regardless of actual utilization of services by
beneficiaries. Peer review and other quality control provisions
guarentee a high level of care.
Overview and Explanation of a CNO

At a minimum, services of a CNO are legislated to include, but
are not limited to: (a) part time or.intermittent nursing care; (b)
physical, occupational, or speech therapy; (c) social and related
services supportive of a plan of ambulatory care; (d) part time and

intermittent services of home health aides; and (e) other related

services to prevent patient institutionalization.

 

 
TT

| CNOs Testimony

CNO services, then, could include basic illness prevention and
life care. services. Basie illness prevention includes sex, drug, and
alcohol education in the elementary and secondary schools, family
communication programs in the- community, and informational services
for special at risk groups. Life care services are health maintenance
and restorative services and include providing for: (a) basic needs of
the client such as homemaking, cleaning, and shopping services; (b)
emotional support for the patient and his/her family, such as respite
care, training the family in the patient care modalities, and family
coping strategies; and (c) skilled care that is based on standards,
policies, and procedures of humanistic care. All the services I
listed are within the scope of professional nursing practice.

Suppliers of community nursing and ambulatory care services
are any public or private organizations that are primarily engaged in
the direct provision of nursing services.

This legislation is a humble beginning for improving care and
its delivery. Unfortunately, there are few people with HIV who are
over age 65 or disabled longer than 2 years (Medicare eligibility
rules) who would qualify for membership in a CNO as presently

legislated.

Recommendation to Extend CNOs to Medicaid Eligible Groups

 

Further reaching legislation that includes Medicaid eligible
individuals is necessary. My recommendation is to extend the CNO
services to Medicaid eligible persons with HIV and HIV-associated
conditions. CNOs could be funded to include, at a minimum, basic

‘liness prevention, health maintenance, and health restorative

 

services. These service, however, should be paid for on a capitation

 

 

 
 

 

CNOs Testimon
basis, not the 95% of the fixed rate basis.

A very tentative estimate of the cost of such care is $83~
million. This figure is based on 2,280 Medicaid eligible persons witfr
AIDS (12% of the population aggregate), at an estimated cost of
$55,760/yr/case. These are new data reported in the Jan. 18, 1988 US
News and World Report from researchers at SUNY-Stony Brook.

Conclusion

It is apparent to nurses who care for AIDS patients in the
field that what is needed is sweeping changes’ in the way nursing care
in the community is reimbursed. Persons with HIV-associated
conditions would be an ideal population with which to demonstrate a
rapid access, flexible model of care. I recommend that CNOs be
accessible to Medicaid eligible individuals with HIV or HIV-associatec
conditions. As with many other diseases, when the patient is in need
of acute care, it is provided and paid for relatively readily. [It is
the chronic, long term coping with the disease that is problematic.
Staff of CNOs can offer direct access to nursing care, that is
flexible with regard to a whole array of patient needs, during the

entire course of the disease, if payment is prospective.

~ ~

~ - a

 

 
 

 

(1)

(2)

(3)

(4)

(5)

(6)

(7)

(8)

CNOs Testimuny

References

|

American Nurses' Association (1980). Nursing: A social policy

 

\
statement. Kansas City, MO: American Nurses' Association

242@ Pershing Rd., 64198.
Henderson, V. (May, 1985). Nursing in a high tech society.
Paper presented at the Virginia Mason Medical Center, Seattle.

Bulechek, G. M. & McCloskey, J. C. (1985). Nursing diagnosis &
interventions. In G. M. Bulechek & J. C. McCloskey (Eds.),
Nursing Interventions: Treatment for Nursing Diagnoses
(pp. 5-31). Philadelphia: W. B. Saunders. A

Fagin, C. (1982). Nursing as an alternative to high cost health
care. American Journal of Nursing, 82, 56-60.

Feldman, M. J., Ventura, M. R., & Crosby, F. (1987). Studies of
nurse practitioner effectiveness. _- Nursing—Research, 36,
393-308.

Sweet, J. B. (1986). The cost-effectiveness of nurse

' practitioners. Nursing Economics, 4, 190-193.

American Academy of Science and the Institute of Medicine
(1986). Confronting AIDS. Washington, D. C.: National
Academy Press. 2191 Constitution Ave., NW, Washington,

D. Cc. 20418. ;
Thomas, Ee, & Fox, D. (referenced) (1988). Why AIDS won't

bankrupt us. US News & World Report. pp. 28-22.

 
JOHN C. LEWIN, M.D.
DIRECTOR OF HEALTH

4N WAIHEE
ANOR OF HaWali

 

STATE OF HAWAII : 7
DEPARTMENT OF HEALTH

Pp. 0. BOX 3378

HONOLULU, HAWAII 96901
In reply,: please refer to:

PACIFIC BASIN SEROPREVALENCE STUDY = File:

~

BACKGROUND AND NEED: Although the epidemiologic factors
pertaining to HIV transmission have been well delineated, there
are many unanswered questions regarding the natural history of an
individual with HIV infection: :

1. At least 30 - 50% of ainfected individuals will go on to

develop AIDS within 3 - 5. years. Why do some infected
individuals remain ostensibly well for > 7 years? What is the
role (if any) of dietary factors? exercise? attitude?
ethnicity’ (especially Asian and Pacific Islanders in Hawail).

e. Should therapeutic intervention be initiated early in the

course of an HIV infection?

Z

3. Can blood virus concentration ("virus titer") serve as a
useful marker ain long term follow-up of HIV seropositive
individuals (along with serial ELISA's, T-cell studies, Western
Blots, and other more typical lab studies such as LDH)? and will
careful and sensitive monitoring of this marker assist in
assessing relative infectivity, progression of disease and
effectiveness of therapy?

Individual one-on-one counseling sessions in conjunction
with knowledge of ones HIV antibody status has been shown ‘to be’
an effective means of behavioral change. However, two issues
have impeded wide scale voluntary testing to occur:
confidentiality assurance and lack of incentive. The former i15
important since there have been many instances of unwarranted
discrimination against HIV ainfected individuals; the latter is
important since at this time we have no cure or vaccine against
this disease.

The purpose of this proposal is to address two important
AIDS related issues: . .

1. Creation of aregistry of seropositive individuals in the
Pacific Basin. Confidentiality will be assured by using
numerical codes rather than names. Demographic variables such as

patient age, sex, ethnicity, as well as clinical status would be
registered. In this manner, when Hawaii begins therapeutic drug
trials, individuals in the registry can be enrolled into these
trials without delay. The registry will also serve to identify

 

 
 

 

lifestyle factors which could possibly. ‘have a beneficial or
detrimental effect on prognosis, as well as other factors such as
availability and, form of health insurance, life insurance, and
disability insurance; other employment factors; traditional
medical treatments and various non-medical or "alternative"
therapies which may have been self-instituted.

|

e. Creation ofian ~incentive for individuals to undergo HIV

antibody testing: Individuals who test HIV antibody positive and
who agree to enter into this study will be rewarded by free
semiannual medical and laboratory exams, and they will obe
eligible to enter any upcoming therapeutic trial on a first came-
first served basis. °

The multi-ethnic/multi-cultural backgrounds of the
population in Hawaii and the Pacific Basin offer a unique
opportunity to explore the possible relations between behavioral
factors and prognosis after HIV. infection; a whole host of
research assumptions can be evaluated. This project is also
unique in that serum viral concentrations will be measured and
assessed as an outcome variable.

PROPOSAL :

Creation of, a Pacific Basin seroprevalence registry.
Individuals will be identified by number only to insure
confidentiality of records. The number code will be 9 digits:

‘the first four digits will designate the physician, and will be
known only by the Hawaii State Dept. of Health; the second five
digits will designate the patient, and will be assigned to the
patient by the physician. In this way the linkage between the
patient's number: and identity will be known only to the patient
and his/her physician. Each individual will be evaluated by a
standardized medical history, physical exam, laboratory exam, and
a lifestyle/behavioral questionnaire. In this manner a multitude
of independent variables will be identified and can be monitored.
Examinations will be repeated at minimum, every six months.
Several outcome variables (continued asymptomatic state;
development of symptomatic HIV infection--ARC or AIDS;
quantification of serum viral concentrations) will be studied
with respect to the many independent variables, in the hopes of
uncovering "protective" factors. In order to measure/monitor
serum HIV concentration, a BL-3 lab will be utilized (The
implementation of such a facility is in the formulation stage).
The lab will serve to further evaluate ELISA/Western Blot rates
of false negatives and false positives. It will also function as.

a reference facility for the entire Pacific Basin.
|

QUESTIONNAIRE/EVALUATION: 7 ( BE DEVELOT EO JN FINAL © NIH [Coc REVIE

Each client will be administered a questionnaire addressing the
following: ,

 

1. Medical insurance? Other insurance (life, disability)?

incl. Compnn | COVERAGE

|
|
|

 

  
 

 

What kind?

AWA
Ethnicity ASIA

Sex J Mainlavo VY
Year of birth, TRS, iN HAWA}! | Gen. WC IM if CITA Pepe iere

OTHEN

Risk factor(s) for HIV infection
HIV infection status: asymptomatic seropositive; ARC; AIDS
Medical history

i

A. present medications (and medications ingested within

the preceding six months). This would = include
Vitamins, mineral supplements.

B. allergies (include manifestations).

C. present symptoms (if any).

D. pertinent past medical history

E. systems review

Social history
A. Marital status

B. Tobacco use (never; < 1/2 ppd; < 1 ppd; >1 ped?)

C. ETOH use (never; occasional; < 1 o2/d3; > 1 o2/d)

D. Drug use (name of drug and quantification of use)

E. Diet (regular; vegetarian; veg + dairy; veg + eggs)

F. Employment last six months (0; part-time; full time)

G. Exercise (none; walking; swimming; bicycling; paddling;
running$ aerobics; yoga; other organized class
activity). Quantify: (<€ 15 min/ds 15 - 30 min/d;

30 min-1 hr/d3; how many days/week?)

s
Sexual history/behavior

A. heterosexual intercourse:
i. vaginal (freq. in last 6 months given as
freq/month)

ii. oral--active (avg/month); receptive (avg/month).

 

 
 

 

1Q.

11.

iii. rectal

B. homosexual intercourse:
le oral--insertive (avg/month); receptive (avg/month)
iil. rectal--insertive (avg/month) ; receptive

(avg/month)
Cc. Number of sexual partners in the preceding six months:
i. male (03; 1; @-53 >5)
ii. female (0; 13; @-5S;3 >5)
Psychological assay:
A. How do you deal with stress? (alone; with close

friends/family; professional help; voluntary
counseling; I have no debilitating stress).

B. How would you best describe your attitude/mood on the
whole over the past six months? (flat; depressed;
highly variable--freq. mood swings: elated)

Physical exam: (ncomPrete)

A. general appearance
B. dermatological pathology
i. ‘folliculitis
ii. tinea
ii1. molluscum contagiosum
iv. seborrhea
Ve eczema
vi. HSV/H-2
vii. ,KS _
viii.'petechiae/ecchymoses 1x VITILIG?
Cc. oral manifestations
he, ‘candidiasis

li. hairy leukoplakia

|
|

 

 
 

 

le.

13.

 
   

D. lymphadenopathy
i. include location: cervical; axillary; inguinal;
other locations (specify)
ii. avg. size in cm
iii. largest node in cm
iv. approx no. of nodes detected (<3; 3-5; 5-10; %10)
Ve tender?
_ vi. characteristics? (hard; rubbery; matted)
k- CHOST ABP NEVALLOG CH, ETC
Lab data (to be gathered every & months)
A. Chemistry panel (SMA 20): including electrolytes,
renal functions, liver functions, LDH, CPK,
cholesterol, triglycerides, etc.)
B. Urinalysis
Cc. CBC with differential and platelet count
D. lymphocyte studies
i. T4 count
ii. TB count
a“
E. PPD (repeat once per year)
F. serum HIV concentration (repeat once per year)
G. stool exam (repeat once per year) + _
lc. WT LV
i. ca S +
_ . -Qes dm
ii. O&P - L. FTA- Ag 5 | .
H. Chest x-ray (repeat once per year/) MY. ReEsEACY cCEnum 7
I. EKG (repeat once per year) LY -30 co initially
frOLEN Tov —710° To
J. baseline labs:
: : NIU; |U-W gq Gm
i. CMV titer THe eat Ter
ii. EBV titer

 

Ww

Physician's comments:

 

N-Wwesteu PLOT
(AMUN Fumes

1 hme:

O. OTHER

NCL

 

 
 

 

OBJECTIVES:

1. Ascertain the clinical course of HIV infection and determine
possible co-factors relating to development of AIDS. This
will include statistical evaluation/risk assessment of
several independent variables as they -relate to the
following dependent variables: development of symptomatic
HIV infectiion; HIV antigen concentration.

ce. Develop a, coordinated, comprehensive registry of HIV

seropositive , individuals in Hawaii and the Pacific Basin
within 3 months of project funding.

3. Increase by at least 50% the number of individuals seeking
HIV counseling and testing within & months of project
initiation.

METHODS:

Through provisions of positive incentives such as medical
examinations and therapy, the number of persons infected with HIV
and seeking testing. services will be increased. A behavioral
mquestionnaire for each HIV seropositive individual will identify
those independent variables which may be protective or
detrimental to the disease course. The clinical course of HIV
infection will be described through a long term follow-up of all
persons enrolled in this”) study. Physician participants across
the state and: the Pacific, will be given ongoing educational
orientation to program goals, methods, standards, and outcomes,
1m order to increase quality of care, patient compliance,
modification of patient adverse behavior, and improve physician-
patient communication.

1
EVALUATION: !
\

The number of persons enrolled in this study will be
reported on a quarterly basis. The relationship between
independent. and outcome variables will be statistically
analyzed. ! i |

BUDGET:
|

1. computer (including printer)
$6500

Qe. laboratory costs (baseline and every six renens 8 0/ Ye tote

$1.70/person baseline — OU LAGC- “initials (& mo 4\ \

N20 - Elo (crt KAY
+40. contract we (2580-0 Xr)

i

 

 
 

 

s43Q/person/year OSB, fe, — (Lp tote |

3. transportation costs (mailing lab specimens from Pacific
Basin countries to Hawaii; must be airmail, refrigerated)
' , $8000/year
4. .staffing: one -full time surveillance epidemiologist (EPI
II) with computer literacy.
$17,500/vear

Six 1/2 FTE coordinators at key sites in thé Pacific Basin
$17,000 X 3 = $51,000
clerical support

$16,000
on staff travel (covers surveillance epidemiologist one trip
every & months to participating territories
$8,000
6. supply costs: paper/printing of questionnaires; lab
equipment
$10,000
ie ‘ro JE
7. contractual costs: (physician inservice "education system and
training programs é
$10,000

6, PAYSICUAN Costs a phox igg/rnf Pt: t LIAQITT — Z00 ,006 [Yr
TOTAL COST FOR N = 600 APPROX. s687.008/vEaR +

G Tore bb Lom [in DIAGNOSTIC, LAR,
L EPiREMIOWGIC
PORTION s

(Ly "incennive! Purttim - 2 La UT v @)
CLinico] TALS pAssocygAed

WITH AN ATEW/CCG pu G eam
NERDEC-

 

 
 

 

JOHN C. LEWIN, M.0.
DIRECTOR OF HEALTH

JHN WAIHEE
GOVERNOR OF HAWAI

 

STATE OF HAWAII
DEPARTMENT OF HEALTH

P. Oo. BOX 3376

HONOLULU. HAWAI! 96801
In reply, please refer to:

File:
MOBILE HEALTH ASSESSMENT VAN PILOT PROJECT °

BACKGROUND AND NEEDS:

Two major objectives which need to be met in order to
increase the number of individuals seeking HIV antibody screening
are enhancing accessibility. and diminishing the stigma attached
with testing. This proposed pilot project will address both
objectives, and simultaneously enhance our other health
assessment objectives in Hawaii.

Attendance at an "alternate testing site" is perceived by
some as a confession of prior behavioral improprieties. Many
individuals who are at highest risk for HIV infection avoid
known testing sites for fear that their "secret lives" be
revealed. By utilizing and enhancing existing public health
nursing clinics as well as instituting a "mobile health
assessment unit" the state of Hawaii hopes to both increase the
number of individuals seeking HIV antibody testing, and
destigmatize the testing process.

PROPOSAL:

The state of Hawaii operates regional public health nursing
clinics. Current activities are targeted to the pre-school age
child (immunizations ‘and well baby checks) and the elderly
(prevention oriented, well-adult programs). As these two groups
are at lower risk for HIV infection, we plan in this project to
target the 18 - 50 year olds.

A health assessment team will systematically move around the
state visiting public health clinics, and major employers. The
team will be preceded by a video cassette promotional with
limited media adverting. During the first week, health
assessment activities will occur. The health assessment team
will consist of three public health nurses (PHN's),: one program
coordinator (RPN V) and two staff nurses (RPN IV's). Press
releases are planned to announce the arrival of the health
assessment team. Eligibility will be limited to individuals 18
years to 50 years. Participants will be given a computerized
"risk assessment" questionnaire to complete. Questions will

 

 
 

 

address dietary history, smoking, alcohol intake, exercise, past
and present medical conditions/hospitalizations, family history,
and personal sexual history. A few demographic variables will be
requested: age, sex, ethnicity. Questionnaires will be
anonymous (coded by number only). Questionnaires will be
reviewed by the PHN's. The appropriate education/counseling will
be given, and blood work may be taken as indicated. Teams will
provide free screening for diabetes (FBS); atherosclerotic
vascular disease (cholesterol); and hypertension (BP screen).
Women of childbearing age may also be targeted for hepatitis B
screening (HBsAg), and family planning counseling and referral.
Individuals who may be at significant risk of HIV infection will
be counseled on behaviors to reduce/eliminate risk. HIV antibody
testing will be strongly advised. Laboratory evaluation for FBS
and cholesterol can be accomplished during initial visit by using
fingerstick technique. Hepatitis and HIV evaluation would
require client follow-up in one week. The team will return to
the same clinic the following week. Clients evaluated for HIV or
hepatitis will be instructed to return to the same location the
following week to receive their test results. Test results will
be given in-person. In this manner, test results can be linked
with appropriate’ counseling or referral. - HIV antibody test
results will include post-test counseling and medical referral.
Many individuals who may have been leery of presenting themselves
to an alternate testing site, may feel more comfortable attending
a public health nursing clinic. These clinics have been utilized
for many years as health assessment, disease prevention/screening
facilities. Participation does not automatically denote concern
about possible HIV infection.

PHN Health Assessment teams can also target large businesses
for employee testing. The van will permit transportation of
team, educational literature, phlebotomy equipment, and
computers. Again, team would return in one week to do post-test
counseling and referral if warranted. The van could also serve
as a clinic site in order to target rural population. In this
scenario, two or three nurses can be talking to clients, handing
out educational literature, or administering the health
assessment questionnaire outside the van while the third nurse is
inside the van reviewing the questionnaire, counseling the
client, and obtaining blood specimens Where appropriate.

Health assessment questionnaires will be done by computer
utilizing existing health assessment programs. Two "lap tap"
computers will be used. ‘

 

 
 

 

TIME LINE:

1. Months 1-2: Staff recruitment

2. Months 3-5: Orientation of PHN staff; HIV antibody
counseling and review of phlebotomy techniques.

3. Months 6-9: Direct services initiated.
4. Months 10-12: Data analysis
OBJECTIVE:

Increase the number of persons seeking HIV counseling and
testing services by at least 50% by December 31, 19788.

METHOD:

“Through enhancing access to counseling and testing services
as well as destigmatizing the testing atmosphere by means of
utilizing existing public health nursing facilities and the use
of a mobile van, more persons at risk or perceived risk of HIV
infection will benefit by counseling and testing.

|
/

EVALUATION:

On a quarterly basis the number of sites visited and the
number of persons counseled and tested will be ascertained
through counting of laboratory slips, questionnaires, and site
visit reports.

BUDGET AND JUSTIFICATION:

—_———
—_——

1) Van 4
$20,000

2) Van operating costs: gas, tires, maintenance, mileage.
$2,500

3) Staffing: 1 RPN Vv

$30,108 for 1 FTE X 8/12 = $22,581
2 RPN IV

 

 
 

 

"Stepdown" Care Unit:

A. Introduction:

In early 1986 the Institute of Medicine and the National
Acacemy of Sciences initiated a special effort to assess the
extent of problems arising from AIDS, 1 quote,

"...patients wno pose special problems are those suffering

“rom neurologic complications. Patients infected with

HI¥Y nave an extremely high incidence of central nervous

system disease (Navia et al., 1986; Perry and Jacobsen,

1986: Snider et al., 1983). In the majority of cases,

the resulting encephalopathy remains mild until death

occurs from some other complication. But in some, and

perhaps with increasing incidence, this encephalopathy

progresses to severe and often fatal dementia over a

period of several months.

During this time continuous custodial care may be required.

Irrespective of the level of family or social support,

these patients can almost never receive adequate care

in a community-based setting, because they require 24-hour-a-day

surveillance... dementia will lead to extended use of

acute care hospital beds unless alternatives are found."

In New York City there are approximately 1300 HIV infected
patients in acute hospital beds on any one day. Of this it

S estimated 1/3 could be better served from a "stepdown"

cype unit.

 

 
 

 

-he idea to develop a stepdown unit evolved erom the 2xperience
of St. Clare's Hospital and Health Center in New York City

with the 60-bed acute AIDS unit, and the mounting scientific
evidence regarding tne AIDS virus and the way in which it
attacxes srain cells and the central nervous system.

AIDS Dementia Complex is a neurological syndrome, characterized

by cognitive, moter and behavioral distrubance.

ty

at St. Ciare's an estimated 33% of patients who are treated

On the acute HIV unit develop neurological complications.

If these patients do not die from an active infection such

as PCP, thev often suffer from severe neurological impairments

such as myelopathies, neuropathies, or dementia. These complications
°re cnronic conditions from which the individual will not

<ecover, but which do not require the degree of medical and

“
“

nursing care which is available on the acute unit, . These’
aa

individtcals are, however, too sick and/or debilitated’ to be
cared for outside an institutional setting or ina tragational

SNF. in addition, because they have active HIV infeétion
- ’ “ o 7
they could become acute at any moment and, therefore, proximity

4

‘ . fo.
to an acute care unit.is crucial.

The nétrological or "stepdown" unit will provide a range

of medical, nursing, psychosocial, nutritional and rehabilitative

“

support services specifically designed for this type of patient.
The existence of a dedicated unit will facilitate research

into understanding the neurological component of HIV.

 

 
 

 

B. Patient Characteristics: ty
While the types of patients to be treated on this unit
can be distinguished for descriptive purposes, many of these
individuals will have two (2) or more of the conditions described
below.
1. Myelopathies and Neuropathies

These are individuals who have developed myelopathies
or peripheral neuropathies as a result of HIV infection or
CMV, a virus common in AIDS patients. “These conditions are
for the most’ part irreversible, though some of those with
peripheral neuropath:es may recover some level of functioning.
The patients with neurcpatnies may be paralyzed from the waist
down and their bowel and bladder function may , therefore,

Se involved.

All of these individuals require considerable nursing care.

Many are bedridden and those who can walk require assistance

in doing so. Physical, recreational, and occupational therapists

will be an integral part of the care team for these individuals.
2. AIDS Dementia Complex:

A significant number of AIDS and/or ARC patients \
develop AIDS Dementia Complex (ADC) as a reSult of HIV infection
spreading to the brain.

The virus itself is capable of crossing the blood-brain barrier
and causing irreversible brain damage. Permanent brain damage
can also be caused by other AIDS infections - e.g., crytoccocul

meningitis,toxo plasmosis, CMV, TB, and by lymphomas of the

prain.

 

 
 

 

dementia .S diagnosed in aprroximately 30 - 50 *% of the patients

f

on the acute care units. Researchers at Cornell have found
that between 5 and 15: cr sercpositive individuals have signs
of the HIV in tne CNS altnougn, otherwise healthy. Findings

{
Suggest HIV mav' attack CNS pvefore the 1mmuno-system of some

individuals.

~ementia leaves individuals virtually unable to care
for themselves. They would not be capable of directing home
nealth care and cannot be left unattended. In many cases
<ney are bedridden and must be watched Closely for numerous
compiications. This condition in AIDS patients has been compared

tO Aizneimer's in terms of its affect on the patient's

mental capacity. Alzheimer's 1s not a terminal illness, though

many
experts believe that patient menagement issues are similar
ror these :
<wo (2) conditions.

3. Physically Debilitated .

For a significant number of AIDS patients, the process

of recovering from an acute episode leaves them physically
debilitated and unable to care for themselves. They require
anstitutional care but do not have to be on an acute HIV unit.
Some will be severely emaciated and require hyperalimentation

to regain weight. These individuals will hopefully become

strong enough to leave the hospital.

 

 
 

 

Another group of patients will be on intravenous, antibiotics
or chemotherapy. They are too weak as a result of their acute
epidose,to be eligible for the ambulatory Iv therapy program
or to manage home care services.
4. Terminally Ill

& small number of the patients in the step-down unit
will be terminal, patients who have chosen to forgo any heroic
life-sustaining efforts. In these cases the physician has
discussed DNR thoroughly with the patient who had decided
to be placed on DNR status and not be transferred to the ICU.

Cc. Summary

In summary, the neurological step-down unit is intended
primarily for persons with HIV infection who have developed
chronic neurological conditions. A smaller number of patients
mho would require hyperalimentation as a result of being physically
debilitated by the disease or too weak to receive chemotherapy
or antibiotics on an ambulatory basis. A few patients in |
this unit will be terminal.

We would recommend 30 to 40 step-down beds, for every
90 - 100 acute beds for persons with HIV infections. It is
espected that at any given time 60% of the patients in this
unit will have neurological conditions - ADC, myelopathies
or neuropathies. The remaining beds will be for patients who
fall intio one of the other categories described above.

The most significant differences between this unit and
the acute HIV unit are (1) these patients will not have, and
+herefore will not be undergoing, aggressive treatment for

active infections (e.g., TB or PCP); (2) these patients will

have chronic rather than acute conditions.

 

 
 

 

As a result, the average length of stay for thas unit will

pe much longer (45: days) than the acute unit (12-15 days);

' ; 1 |
(3) generally the patients will require less medical intervention
|
|

than the patients lin the acute AIDS unit.

 

~ . { « a
The levei of nursing care in this unit will be comparable

to a general medical-surgical unit day with enrichment of

. , tae |
other cisczplines such as nutrition, rehabilitation, neurology,
\

sociéi wark, psychology, recreational and occupational therapies.
The anticipated cost for a patient on such a unit would
be the median cost. between acute AIDS care and acute Medical/Surgical
Care. For instance at St. Clare's Hospital and Health Center,
New York City. The acute AIDS per diem rate 1S 36% greater

than the acute Med/Surg rate. The stepdown unit per diem
|

te should, therefore, be about 18% greater than acute Med/Surg
|

i
rate. |
|

 

 
 

 

SUPPORTING EVIDENCE

f

Hospital Progress November/December_ 1987:

By 1991, 13,854 hospital beds will be occupied by AIDS
patients or 5 million hospital bed days with costs exceeding
$ 3.5 billion dollars.

AIDS patients will occupy almost 27% of the medical surgical
beds and will account for nearly 37% of total hospital
costs.

BENFER: Health Care Policy and AIDS:
Henry Ford Hospital Medical Journal, Vol. 35, #l,
1987, p. 54.

The CDC estimates that the national cost per day for
an AIDS patient is $ 830. Although this estimate varies regionally
from $1,000 in New York City to $ 878. in San Francisco to
$963 Los Angeles, one point 1s clear ! all figures are clearly
double the average daily cost for treating other patients.
When evaluating the cost of care for an AIDS patient, a substantial

variation exists in total system cost between the acute care

 

model and the continum of care model. In New York City, where
care is provided primarily by acute care general hospitals,
the costs of managing an AIDS patient from diagnosis to death
is approximately $150,000.

At the other extreme, in San Francisco, where an AIDS patient
*“s managed on a continum of care by being placed in the lowest
Jost and most appropriate setting for care, the total cost

from diagnosis to death 1s reduced to approximately $30,000.

 

 
 

 

United Hospital Fund: Blueprint Fall 1987 -

|
|
At least 9% of hospitalized AIDS patients could be treated
in long term care facilities... Morever, many AIDS patients
currently
receiving caré ‘at home might: fare’ better ‘in non-acute care
institutional settings.
People with AIDS in New York City are on average more
than twice as likely to be hospitalized at a given time than
are their counterparts in San Francisco. And although average
daily hospital care costs for AIDS patients in the two cities
are similar, charges per AIDS admission in New York are on
average more than double those in San Francisco, largely because
|
‘f longer average length of stay.
While these differences stem in part from the fact that
New York City's’ AIDS patient population includes a significant
percentage of rv drug abusers, who tend to be the sickest
and most expensive patients to treat, San Francisco's ability

to provide much’ care for people with AIDS outside the acute

care setting has been a crucial element in the lower costs

of the epidemic there.

 

 
 

 

BIBLIOGRAPHY

Navia, B., Jordan, B., Price, R.; "The AIDS Dementia Complex:
I Clinical Features"; Ann. Neurol.19: 517-524, 1986.

Navia B., Cho, E.-S., Petto, C., Price, R.; "The AIDS Dementia
Complex: II Neuropathology"; Ann. Neurol. 19: 525-535,
1986.

Confronting AIDS Directory for Public Health, Health Care,
and Research, National Academy Press, Washington, D.C.,
1986.,

 

 

 
 

 

PN OSLLYESOURCEKeJENTER...

SUBJECT: Statement of Joseph McEarthy to the Presidential
Commission on the Human Immunodeficiency Virus Epidemic
13 January 1988

Among the numerous perplexities you are called upon to weigh in this epidemic,
the challenge of finding a system of care at once humane, effective and cost-
efficient, is one of the most pressing. It is our purpose today to bring before
this Commission a viable solution to the problem of providing essential

services and compassionate care for the increasing number of people-with-AIDS,
and, most particularly, the homeless with AIDS.

The health-state of the PWA often consists of a long period of impairment

petween medical interventions. The PWA may not be able to work a job, but in

other respects is capable of normal self-care. Because of the deficiencies

within the immune system, living situations such as shelters and other

dormitory type quarters are inappropriate, if inexpensive. The streets and

welfare hotels are regions too predatory for the ill. To keep a PWA ina

hospital simply as an alternative to homelessness is a waste of medical resources
- and moneys. Somewhere between "coffee and a doughnut in the morning, close

the doors & let ‘em back in at 6PM," and weeks in a hospital bed with no need

for medical attention, lies reasonable provision.

The AIDS RESOURCE CENTER, a not-for-profit organization was founded five years
ago to provide housing and spiritual care for people with AIDS and their

loved ones. These concerned New Yorkers were alarmed by the widespread fear
and ignorance surrounding the epidemic which resulted in growing numbers of
PWA's homeless and unsupported by the social network. The AIDS Resource
Center responded to the housing crisis through the development of a scattered-
site apartment program in 1985. This program is designed for persons able

to live independently with Limited support services, and now houses twenty-
three persons in seventeen apartments in NYC, including families with

children. Through this experience with the apartments, ARC saw the overwhelming
need for a group residence, one which would provide more comprehensive, support
services as well as a safe and caring environment. In December 1986, this
need was realized in Bailey House, a 44-unit group residence. It is the first
and only facility of its kind in NYC. It is a former hotel. Each resident

is provided with a private-room, bath, all meals, and a broad range of support,
including counselling, recreational and occupational therapy, spiritual/
pastoral care, and connection to medical providers.

In these two programs, the scattered-site and the residential, the AIDS
Resource Center offers the nation, through you, Members of the Commission,
a compassionate, efficient and cost-effective answer called forth by this
unprecedented social and medical emergency.

- continued -

24 WEST 30TH STREET NY, NY 10001 (212) 481-1270

 

 
 

 

p2

In accompaniment to this statement, I have submitted various documents
attesting to the plight of the homeless, the various inappropriate responses
to housing PWA's, a réport from the Health&Human Services Intracovernmental
Task Force on AIDS Health Care Delivery, and other positions worthy of your
attention; but let me close with a quick overview:

In the face of ever-growing calls for the containment of governmental costs
related to this epidemic, this plain fact stands out:
Depending on which of these models a PWA is suited for,
he or she can be accomodated for $60 to $100 a day. This
compares to $500 per day in a hospital; a minimum of $500, for
this cost can readily double or triple.

Why is it not funded? Because it falls between the institutional guidelines
for housing the ill. The AIDS Resource Center does not run a hospice; nor

a hospital; nor a nursing home; it runs residences for people living with

a potentially terminal illness. The AIDS Resource Center is the one organization
in New York City whose single goal is to house the homeless person-with-AIDS.
Our success 1s that, since our first resident, we have helped 300 homeless
people with AIDS to live in a decent place. Our failure and frustration is

that our present capacity represents less than 10% of those estimated to need
such care.

 

 
 

 

ADO Hw Ou “A

 

CARE HEARINGS. - Recommendations

JANUARY ]3-]5 Pagei]) of 2

 

RECOMMENDATIONS

 

Development of models to recruit, train and retain foster
parents for children with HIV infection. Programs must
be staffed to provide ongoing nursing and social work
support for foster families. .

250,000 - 500,000/project

Cost: §$ Based upon:

RECOMMENDATIONS

 

Development of small group homes that provide transitional
placement for seropositive well/mildly symptomatic children
with HIV infection. Initially these homes should be concentrated
in areas with large numbers of children, and subsequently in
states projecting an increased in infected children.

Cost: $§ 500,000 annually/home pased upon: Start up costs of St. Clares in

 

 

 

 

 

 

RECOMMENDATIONS

Mary G. Boland J The Ke
Name children's Hospital of NJ Signature /] ‘—”*

15 South 9th Street 1/13/88
Address Date

Newark, New Jersey 097107 201 268-8273

 

 

City State Zip Area Code and Telephone

 

 
 

 

CARE HEARINGS Recommendations

JANUARY J]3-J5 Page2] of 2

 

RECOMMENDATIONS

 

ate —_—

Funding of a feasibility study to evaluate alternative
levels. of care, i.e. sub-acute care, for children with
AIDS. These facilities would serve those children
whose disease is severe enough to preclude home based

foster care.

Cost:" $ 300,000 Based upon: Expected research costs

RECOMMENDATIONS

\

Cost: § Based upon:
RECOMMENDATIONS

oer ee

Mary G. Boland

 

 

 

tamé children's Hospital of N.J. SYgnature a. _
15 South 9th Street
1/13/88
Address Date

ee LO & _.
City State In reas i ats so. _o

 

 
 

 

PRESIDENTIAL COMMISSION ON THE HIV EPIDEMIC
CARE HEARINGS _
JANUARY 13-15, 1988 »

Inpatient Care
Michael J. Clement, M.D.
Clinical Instructor in Medicine _,
University of California San Francisco

Coordinator, Inpatient AIDS Services
San Francisco General Hospital

The City and County of San Francisco has the second largest total
number of AIDS patients in the United States (after New York).
Early in the HIV epidemic physicians, nurses, and administrators at
San Francisco General Hospital (SFGH) recognized the need to
organize inpatient care to meet the multiple needs of the AIDS

patient. The multidisciplinary care program at San Francisco

General has evolved into a national model for inpatient AIDS care.

In 1983, SFGH opened a twelve bed unit dedicated specifically to
AIDS patient care. This unit was staffed by all volunteer nurses,
truly brave individuals who strove to provide compassionate,
complete nursing care at a time before identification of the human
immunodeficiency virus (HIV), when much of our current knowledge of
transmission was unknown. A full-time social worker was

on the unit. And, recognizing the unique psychosocial needs of
AIDS patients, Shanti workers were incorporated into the care team.
Shanti workers had previously provided emotional-support, peer-
counselling to terminally ill cancer patients. Their skills were
well suited to the AIDS patients’ needs. The medical housestaff
from the University of California at San Francisco and attending
physicians from the AIDS Division and Department ‘of Medicine

completed the care team.

 

 
 

 

Inpatient Care | 7 Page 2
Michael J. Clement, M.D.

As the epidemic grew, the requirement for additional inpatient beds
resulted in a move to Unit 5A, a twenty bed unit. An additional
social worker, a clinical nurse specialist, and an AIDS attending

physician were hired.

Today, at SFGH, our average daily census of AIDS patients is
between 25 and 40. Besides the 20 patients housed in all private
rooms on Unit 5A, there are patients, in psychiatry units and in
private rooms in medical-surgical units throughout the hospital.

Our average length of stay is currently eight days.
There are between 60 to 80 admissions. per month. |

The majority of patients are admitted to general internal medicine
and family practice teams consisting of an attending physician, a
senior resident, two interns, and two medical students. The
remainder of patients are on psychiatry or surgical training teams.
There 1s no specific AIDS medical housestaff team. Instead,
patients are cared for by all of the housestaff teams. This is in
line with our philoscphy that primary care internists and family
practitioners should direct the care for AIDS patients. The
inpatient AIDS attending physician at SFGH is available for
specific consultation and as a resource person for the housestaff

training teams.

 
Inpatient Care . Page 3
Michael J. Clement, M.D.

Two weekly, hour long patient care conferences are held, as well as
a weekly discharge planning meeting attended Ey nurses, social
workers, and representatives of a number of outpatient service
agencies, including persons from home care and hospice, substance

abuse services, and skilled nursing facilities.

Our system for AIDS patient care works well in San Francisco’ in
large part because of the population of patients we serve. Ninety-
eight percent of our patients are homosexual or bisexual men.
These men have intact social support systems, friends, lovers, and
family, willing to care for them at home, in fact 65% of our
patients are discharged to home. This is not the cage for
hospitals in New York City or Miami, for example, where at least
half of the patients are intravenous drug users. Social support
systems do not exist for these people and consequently length of

hospital stay increases. As the percentage of these patients

increases, so will health care costs.

Our systen of, care in San Francisco also works because of the wide
array of Home Care Services and volunteer groups willing to care
for AIDS patients at home. Our shorter average Length of stay of 8
days and the fact that 85% of our patients choose to die at home

reflect these facts.

The future of the HIV epidemic looks bleak. The total number of
AIDS cases may double by 1993 in San Francisco. This projection

assumes a lack of effective antiviral therapy in the interim. The

 

 
 

 

Inpatient Care Page 4
Michael J. Clement, M.D. ;

percentage of intravenous drug users will’ increase, adding to

hespital usage and cost.

In San Francisco, there are probably enough hospital beds to care
for these expected numbers of AIDS patients. The problem is, the

lack of physicians willing to care for these patients.

Physician reluctance comes from an unwillingness to care for large
numbers of terminally ill young patients, from inadequate

reimbursement for time spent caring for these complex patients, and

probably from a degree of fear for infection with the HIV virus. :

In the past, hospital costs in San Francisco have been low,
partially as a result of relatively infrequent intensive care unit
(ICU) use by AIDS patients. Most of our patients are knowledgeable
about their disease. They have seen friends and lovers die of
AIDS. Understanding the terminal nature of their disease, they do
not choose mechanical life support. This is sometimes not ‘the case
with AIDS patients who are intravenous drug users (IVDU). In many
cases, they lack any personal experience with AIDS patients. They
opt for "everything" to be done, including mechanical life support.
We may anticipate the use of ICUs to increase with an increasing

percentage of IVDU patients.

IcU use may also increase if effective antiretroviral therapy is
developed. Patients may take that small chance of surviving
mechanical ventilation for severe Pneumocystis carinii pneumonia,

if the prospect of effective antiviral therapy exists.

 

 
 

 

Inpatient Care ; . Page 5
Michael J. Clement, M.D.

é

In the last 15 months at SFGH, we have seen a 175% increase in the
use of inpatient psychiatry beds by AIDS patiénts. This reflects
the increasing numbers of AIDS patients, some of whom suffer from
HIv-related central nervous system disease. These patients can
initially present with acute psychoses. They can also develop
severe, progressive dementia, accompanied by incontinence. This
condition requires 24\. hour attendant care in skilled nursing
facilities. Beds in ‘these kinds of facilities are scarce,
resulting in longer stays in the hospital. These days spent

awaiting placement result in Médi+Cal decertification, and,

therefore, minimal hospital reimbursement.

In summary, AIDS patients represent a diversé Cross-section of
society. They are patients with complex, social and medical
problems, which require a multidisciplinary team approach for their

care.

 

 
 

 

Inpatient Care ~~ ” Page 6
Michael J. Clement, M.D. ’

We believe the needs of AIDS patients will be best served by

implementing the following recommendations:

AIDS patients should be cared for by primary care internists or
family practitioners.
Inpatient hospital care requires a multidisciplinary team
approach. Team members include:
- Nurses trained specifically. in how to care for AIDS patients
- A full-time social worker
- Inpatient emotional-support, peer-counselling modeled after
the Shanti Progran.
- The primary care physician
- Access to physicians specialized in AIDS care for
consultation, as needed.
- Active involvement by outpatient social service agencies in
the discharge planning process.
Length of hospital stays can be kept to a minimum if
outpatient, home care services are available. Home care costs
approximate $100-200 per day, whereas typical hospital costs
approach $900 per day. Several opportunistic infections may be
well cared for at home.
Length of hospital stays can be kept to a minimum if funding
exists for subacute or skilled nursing level care. Typical
daily costs approximate $300 per day, as opposed to $900 per day

in hospital.

 

 
 

 

Inpatient Care : ‘ * Page’ 7~
Michael J. Clement, M.D.

te ' ‘ ' ’ €
¥ - — +

5. Reimbursement must be increased -for physicians ‘caring for these
patients, both for inpatient professional fees, as well as
outpatient fees. AIDS patients’ complex medical’ problems
require extensive hospital or office visit time. Current
reimbursement for a typical 30 t6 45 minute visit is only $13,
an amount which does not even cover overhead. - Reimbursement.
should be increased to levels which ‘would provide incentive for
physicians to continue to care for thesé patients.

6. Emotional support, peer counselling must bé available, both on
an inpatient and outpatient basis. In many cases, these
services can circumvent the need for much more ‘expensive
psychiatric intervention. A full-time Shanti worker costs: much
less than a psychiatrist. NE

7. Physician training programs designed for practicing physicians
to learn how to care for AIDS patients should: be implemented.
These could be modeled after the AIDS Physician Educational
Experience (APEX) training program, now underway at San °
Francisco General Hospital (Cost $140,000/year).. This is ‘the-
only such program in the United States, and yet we have been’
unable to obtain federal support. oo "

8. Psychiatric inpatient beds must be available for the ever
increasing number of AIDS patients suffering from HIV:
encephalopathy and acute psychiatric illness. .-The.incidence of
depression and suicidal ideation is great in HIV infected

individuals. Daily cost = $800/day.

 

 
 

 

Inpatient Care Page 8
Michael J. Clement, M.D.

9. AIDS patient care currently frequently involves experimental
therapy which requires hospitalization. But, about 20% of our
patients are currently decertified for reimbursement if on
experimental therapy. Federal funding must be made available
for inpatient experimental care.

10. AIDS patients require increased laboratory testing for
specialized microbiologic, chemistry, and hematology tests.
AIDS patients require increased numbers of transfusions. For
additional T4 helper lymphocyte tests at SFGH, 20,000
additional dollars will be required for just that single lab

test.

’

Additional transfusion requirements at SFGH resulted in an

additional $200,000 costs this year alone.

The cities and states cannot bear these costs alone. Federal
funding is required.

11. Federal funding must be made available, especially to areas
with a large number of AIDS patients, for all aspects of

inpatient and outpatient care.

For example at SFGH:

Average daily census of 35

$800/day = nursing + ancillary costs

Outpatient visits = §33,000/year 1988

Outpatient costs = $150.00/visit

 

 
-Lnpatient Care Page 9
Michael J. Clement, M.D.

Inpatient. 35 x 365 x 800 $10,220,000

Outpatient. 33,000 x 150

4,950,000

$15,170,000

These costs projections do not include:
- HIV positive gsymptomatic patients
- Inpatient physician services

- Additional costs for staff training

- Additional costs of Universal Body Substance Policy

12. As the percentage of AIDS patients who are IVDUs increase,
outpatient and subacute care facilities will be overwhelmed.
Federal funding for skilled nursing facilities, such as the
Public Health Service Hospital in San Francisco, must be
available. The estimated cost of such facilities is $200-
300/day, a savings of about $600/day, when compared to hospital

costs.

 
 

 

TESTIMONY OF JUDY L. SPINELLA

CARE HEARINGS Recommendations

JANUARY ]3-]5 Page ]j0f 15

 

RECOMMENDATIONS

 

Federal resources must be provided to develop ind implement nursing educational programs
at four HIV Infection Treatment Centers in the U.S. The programs will utilize nursing
experts to train nurse clinicians, administrators and educators to become trainers for
their own hospitals. Curriculum should include: nature of the disease, prevention and
transmission, nursing care of patients with HIV infections and related dementia, importanc
of discharge planning and community resources, psycho social support of patients including
cultural and racial issues*™importance of confidentiality.

 

 

 

Cost: $ $904,584.00/yr Based upon: Grant submitred ($1,400.00 ner
RECOMMENDATIONS paticipant )

Cost: $ Based upon:

RECOMMENDATIONS

 

Judy—Spinella ee Sint AL
am atu

2905 St. James Road J/7 (39
Address Date °

Belmont , CA 94002 415-821-8503
City State 41D Area Coae ana Telepnone

 

 
 

 

TESTIMONY OF JUDY L. SPINELLA

CARE HEARINGS Recommendations
JANUARY ]3-]5 Page ]20f 15

 

RECOMMENDATIONS

Hospitals and health care workers should adopt universal body substance precautions for
all patients as recommended by the Centers for Disease Control, the Occupational Safety.
Health Administration and the American Hospital Association. This requires hospitals to
provide appropriate :

- policies and procedures

- staff education and training

- equipment and supplies

- programs of compliance monitoring

Rough estimate of cost( 130,000
patient days, estimate supply cost
Cost: $ 4 per patient dav sunply Based upon: $500,000.)

RECOMMENDATIONS cost

Cost: $ Based upon:
RECOMMENDATIONS

 

Judy L. Spinella MB. ee A, Stl CL |

Name Sghatuye/
2905 St. James Road A -
UJ2z{[Sg

Address Date?
Belmont, CA 94002

 

415-821-8503
te 21D Area Coae anda Telepnone

 

 

City Se

gu

 

 
 

 

TESTIMONY OF JUDY L. SPINELLA

CARE HEARINGS Recommendations

JANUARY J3-]5 Page J30f 15

 

RECOMMENDATIONS

Adequate Federal reimbursement providing the incentive for development and
implementation of community resources to supplement acute hospital care for HIV
patients is needed. Community support systems should include:
- long term care (SNF) beds for care of patients with medical problems
as well as dementia.
- hospice beds and/or services
- coordinated vo-."nteer services
for physical, psychological, and social support
- shelter
~ reimbursement for nursing services

Acute care $800/ pt. day
Home care $100/ pt. day UCSF - Institute for Health

Cost: $§ Longterm care $300/pt. day Based upon: Policy Study
RECOMMENDATIONS

Cost: § Based upon:
RECOMMENDATIONS

 

Judy_L, Spinella Dut Srnetho
Name sepa mare} J

 

 

2905 St. James Road plo IS
Address Date ,
Belmont, CA 94002 415-821-8503

 

 

City State Zip area Code and Telepnone

 

 

 
 

 

TESTIMONY OF JUDY L. SPINELLA °

CARE HEARINGS Recommendations

JANUARY ]3-]5 Page j4of 15

 

RECOMMENDATIONS

 

Training scholarships will be established to prepare graduate nurses with specialized
skills in patient, family and staff support.

Cost: $ $200,000 per program Based upon:  Fsrimates
RECOMMENDATIONS

 

_— me we et

 

Hospitals should develop employee assistance programs to Support staff 1n coping
with the stress of dealing with patients with HIV infections including the societal
aspects, as well as providing any needed support for health workers who have become
infected with HIV through an occupational exposure.

Cost: 3

on : ar “A006 “rons 1 PTR

RECCMMENIAT ION:

 

wee eee ee -
= ee ee ee — —_ ——e = ee ee
- ——_ =
~- -

. Que * o ‘
er eo 8 # ye s -
ene ee ee + , * >= Ate or Oo oN
o-- e

Dw5 St, we,
Acoress

 

Belmont, CA 94002 ~to- 21-5303

City state wip rea Code and Telepnone

 
 

 

TESTIMONY OF JUDY L. SPINELLA

CARE HEARINGS

JANUARY ]3-]5

Recommendations

Page J50f 15

 

RECOMMENDATIONS

 

Federal resources must be provided to develop and implement educational programs

for inpatients diagnosed with HIV infections.

 

 

 

Cost: $200 000 per program Based upon: Estimate for program development
RECOMMENDATIONS

Cost: § Based upon: |

RECOMMENDATIONS

 

\

Judy _L. Spinella Dury. SBeneil we
\

 

 

 

 

Name S39 atuye/ 7
”

2905 St. James Road pIrfl3 Tx

Address Date ‘

Belmont, CA 94002 ’ 415-821-8503

 

 

City State Z1p Area Code and Telepnone

 

 
 

TESTIMONY OF JUDY L. SPINELLA

CARE HEARINGS Recommendations
JANUARY*]3=-]5 Page J6éof 15

 

RECOMMENDATIONS

The Health Care Financing Administration Condition of Participation: Infection
Control needs to be reviewed and revised to allow hospitals to utilize universal

body substance precautions for all patients.

NONE

 

 

 

Cost: § Based upon:
RECOMMENDATIONS
Cost: $ Based upon:
RECOMMENDATIONS

 

1 w/ <r 7)
Judy L._ Spinella ute Al poet AL
Name Sipe ne 7
2905 St. James Road : : Py
sLr/ 3

 

Address Date

Belmont, CA 94002
- ' 415-821-8503

 

City

Zip area Coae and Telepnone

"A
(t
fu
ct
(0

 

 
TESTIMONY OF JUDY L. SPINELLA

CARE HEARINGS Recommendations

JANUARY ]3-]5_ Page ]70f j5

 

 

RECOMMENDATIONS

 

The State Departments of Health Services Hospital Licensing and Certification
Standards regarding infection control need to be reviewed and revised to allow
hospitals to utilize universal body substance precautions for all patients. In
addition, state health facilities evaluators ‘need to be provided with the most
current information on HIV infections and infection control.

 

 

 

 

 

 

 

 

 

 

Cost: § NONE Based upon:
RECOMMENDATIONS ”
Cost: § Based upon:
RECOMMENDATIONS
Judy L. Spinella ct Lor ~V Spout Co
Name en

S wature/
2905 St. James Road xg

/ 7 /R

Address Date
Belmont, CA 94002 - 415-821-8503
City State ZOD area Coce ana Telepnone

 

 

 
 

 

TESTIMONY OF JUDY L. SPINELLA

CARE HEARINGS Recommendations
JANUARY ]3-]5 Page ]8of 15

 

RECOMMENDATIONS

Hospitals should protect information concerning HIV testing and the antibody status
of patients and employees from disclosure to anyone without a legitimate need for
the information.

 

 

 

 

 

 

 

 

 

Cost: §$ NONE Based upon:
RECOMMENDATIONS
Cost: § Based upon:
RECOMMENDATIONS

Judy L. Spinella <) uke, 2 Dod ob
Name Stgpature// /

i a

2905 St. James Road fv /8 7
Address Date °

Belmont, CA 94002 - 415-821-8503

 

 

 

City Area Code and Telepnone —————

"
cr
fv
a
@
t

k

U0

 

 
 

TESTIMONY OF JUDY L. &PINELLA

CARE HEARINGS Recommendations

JANUARY ]3-]5 Page Joof J5

 

RECOMMENDATIONS

 

Schools of Nursing (as well as programs for other health care workers) should
modify their curriculums immediately to include information about the HIV epidemic.
This should include:

- Nature of the disease
Prevention
HIV transmission
Nursing care of patients with HIV infections and related dementia.
Importance of discharge planning and utilization of community resources.
Psycho-social support of patient including cultural and racial issues.
Importance of confidentiality.

 

 

 

 

 

 

 

 

 

 

 

Cost: $5 190 000 Based upon: Consultant fee and distribution
RECOMMENDATIONS

Cost: $ Based upon:

RECOMMENDATIONS

—

Judy_L. Spinella co) a pS po a
Name Signature |/ fy
2905 St. James Road y/7/ KY

Address Date

Belmont , CA 94002 - 415-821-8503

Lty state Zid Nrea Coae ana Taleonone

 

 
 

TESTIMONY OF JUDY L. SPINELLA

CARE HEARINGS Recommendations
JANUARY J3-]5 Page joof 15

 

RECOMMENDATIONS

A case management model of care for patients with HIV infections should be implemented.
This model involves collaborative multidisciplinary care, a comprehensive continuum

of services and community linkages. In the inpatient setting a registered nurse

must supervise and evaluate the nursing care for each patient. The registered nurse
May assign nursing care of patients with HIV infections to other nursing personnel

in accordance with patient's needs and the specialized qualifications and competence
of the nursing staff available.

 

Lifetime care costs UCSF Institute for

This model ($ 35,600 /patient in 1984 dollars ) Health Policy Study,
Cost: $ Other models ($60,000-$147,00@aseq upon: Palo Alto Medical Founda-
RECOMMENDATIONS per Patient / CDC.

 

Cost: §
RECOMMENDATIONS

- Based upon:

dy L. Spinella Budiey. we Dowd. i AL

 

 

 

 

 

 

 

 

 

 

Name
Sigwature if’
a
2905 St. James Road “ phel TV
Address Date —
Belmont, CA 94002 _ 415-821-8503
City State ZL area Coce ana “elsonpne

 

 

 

 
OY

TESTIMONY OF JUDY L. SPINELLA

CARE HEARINGS Recommendations
JANUARY ]3-]5 Page Jlbf 15

 

RECOMMENDATIONS

 

Early and comprehensive discharge planning for hospitalized patients with HIV
infections must be implemented by a Multidisciplinary Health Care Team. Acute
care staff need to develop an increased awareness of available community resources.

 

 

 

 

 

 

 

 

Lifetime care costs UCSF Institute for
this model ($35,000/patient in 1984 dollars) Health Policy Study,
ie other models ($60,000-$147,000 } Palo Alto Medical Founda
Cost: 5 Based upon: tion
RECOMMENDATIONS CDC
Cost: §$ Based upon:
RECOMMENDATIONS
Oy Spewet
Lidy I Spinella CN ULC HAN? ol ch
Name Signature / a?
2905 St. James Road. tly / vy
Address Date :

 

 

400? - 415-821-8503 .
ay State 21D Area Coae ana Teleonone

 

 

 
TESTIMONY OF JUDY L. SPINELLA,

CARE HEARINGS Recommendations

JANUARY ]3-]5 Page ]ipf 15

 

RECOMMENDATIONS

 

Federal funding for nursing research to evaluate models of nursing care provision
for quality and cost effectiveness must be provided.

 

 

 

oN
Cost: $ 900,000 Based upon: 3 projects @ $300,000
RECOMMENDATIONS
Cost: 2

 

 

PAUL STAC Soe ae
RCO MME OAT - ee

 

oe ee -_ ——— —-—- _— ——— a ene
—=_ —_ —

Pray 7, .
avame ane orn
2905 St. James  voau

 

 

 

Address Date
Belmont, CA 94002
415-821-8503

Z1D area Coae and YTeleponone

 

 

 

 

On
te
ct
Ke
"
CF
fu
ct
m

 

 

 

 
 

 

TESTIMONY OF JUDY L. SPINELLA

i /

CARE HEARINGS Recommendations

JANUARY ]3-]5 Page Ji pf 45

 

RECOMMENDATIONS

 

Federal resources should be provided for development of marketing strategy to change.
public perceptions of HIV infection. This educational material should include:
- Disease transmission °
- Current high risk groups - homosexual and bisexual men, intravenous drug users.
- Rise in HIV infections in heterosexual men. and women, minority groups and

 

 

 

 

 

 

 

 

children.
- Prevention

Cost: $ 100.,.000 Based upon: Estimates
RECOMMENDATIONS
Cost: $ Based upon:
RECOMMENDATIONS

Judy L. Spinella ude De 2 ow
Name S¥gnature/ /

eo

2905 St. James Road ifia/Fs
Address Date of

Belmont, CA 94002 - 415-821-8503

 

City State Z1D Area Coae and Telépnone

 

 
 

 

TESTIMONY OF JUDY L. SPINELLA

CARE HEARINGS

JANUARY ]3-]5

Recommendations

Page Jlof 15

 

RECOMMENDATIONS

Federal and State resources are needed to develop and implement programs
to attract individuals with diverse cultural backgrounds into nursing.
These programs should be targeted to youngsters in Public School Systems.

 

 

 

Cost: $ 100,000 per state Based upon: Estimates __
RECOMMENDATIONS

Cost: § Based upon:

RECOMMENDATIONS

 

Judy L. Spinella udp wv Sau eet
7

 

 

/ | 7/3 Ss

 

 

Name gignatury
LL
2905 St. James Road
Address Date
Belmont, CA 94002 - 415-821-

8503

 

 

Cacty state Zid area Code ana Telsonone

 

 
 

 

TESTIMONY OF JUDY L. SPINELLA

CARE HEARINGS Recommendations

JANUARY ]3-j5 Page },50f 1s

 

RECOMMENDATIONS

A central federally funded clearing house for the latest information on HIV
infections should be established at the Center for Disease Control. This
clearinghouse should be utilized by hospitals and other health system agencies,
the media and others to promote consistency and accuracy of information.

 

 

 

 

Cost: $ s9q.qo0- Based upon:  perimates.
RECOMMENDATIONS

Cost: § Based upon:
RECOMMENDATIONS

 

~X SPowid wm

Tud3z__J Spinel j a

Name pignaturg

 

 

 

2905 St. f/f

5 St. James Road //7) 8
Address Date :
Belmont, CA 94002 415-821-8503

 

 

City state Zip Area Coae anda Telepnone

~

f
‘

 

 
 

 

Testimony

Presidential Commission on the Human Immunodeficiency Virus Epidemic

Wednesday, January 13, 1988

Esther Chachkes
Director of Social Work Services
Presbyterian Hospital
Columbia Presbyterian Medical Center
New York City
Adjunct Assistant Professor
Columbia University School of
Social Work

 

 
 

 

4)

2)

6)

7)

8)

9)

10)

$20,736

$27.648 for 1 FTE X B/le
1 clerk/secretary

$16,000 for 1 FTE X 8B/1e = $12,000
Liability insurance coverage
$20,000
Lab supplies: vacutainer assembly (red top tubes, needles),
alcohol wipes. tourniquets, bandaids, ice box (igloo?).
$2500
Lab equipment: reflotron (fingerstick cholesterol monitor)
$5000
Glucometer (fingerstick glucose monitor)
$500
Office supplies: 3 tables, twelve chairs, (to transport if

needed to testing sites), three desks, two telephone lines,
one cellular telephone.
$4600

two lap top computers.
$4000 X 2@ = $8000

Health Education Literature: Cholesterol, HT, Perinatal
Hepatitis B, Diabetes, Family Planning.
$250

Contractual funds for development of video cassette promotion
and limited media advertising
$15,000

TOTAL COST (INCLUDING START UP AND FOUR MONTH DBERECT SERVICES)
APPROX. $134,000. ($40,000 OF THIS REFLECTS INITIAL EQUIPMENT
EXPENDITURES; HENCE SUCCEEDING YEARS WOULD BE SIGNIFICANTLY LESS
COSTLY).

 

 
 

 

Testimony by Esther Chachkes

Distinguished members of this Presidential Commission on the Human
Immunodeficiency Virus Epidemic:

My name is Esther Chachkes and I am the Director of Social Work
Services at the Presbyterian Hospital of the Columbia Presbyterian
Medical Center in the City of New York. We are a 1291 bed
voluntary hospital and a major teaching institution located in
Northern Manhattan. We treat patients requiring the full range of
medical, surgical and psychiatric services from New York City, the
adjacent metropolitan areas, as well as throughout the country and
abroad. We are also the primary health care provider for the .
Washington Heights and Inwood community of Northern Manhattan, a
community with one of the highest birth rates in the City and whose
most dramatic socio-economic characteristic is its poverty and the
severity of its social problems, including drug abuse. The Medical
Center is a major research center for HIV studies and includes the
recently established HIV Center for Clinical and Behavioral
Studies. The hospital has seen a fourfold increase since 1982 in
the numbers of persons we serve with C.D.C. defined AIDS. The
racial and ethnic composition of persons we treat reflects the
characteristics of the New York City population, in which a large
percentage of patients are black and Hispanic. Heterosexual IV
drug users, their sexual partners and children represent a
significant proportion of patients with AIDS that are currently
served by New York City hospitals including the Medical Center.

I have been involved since 1983 in the development of hospital
based social service programs for persons with AIDS and their
families, first at the Montefiore Medical Center and more recently
at the Presbyterian Hospital and have participated in a variety of
networks and task forces established to promote effective approaches
to care. I speak from the point cf view of this experience. I
want to thank you for giving me this opportunity to speak to you
and to share the thoughts and concerns of the social work community.
My remarks also reflect the thoughts of my colleagues, in
particular, of Lawrence Shulman, Vice President of Social Work at
St. Lukes - Roosevelt Medical Center and Gerald Beallor, Director
of Social Work at the Montefiore Medical Center - both of these
institutions are in New York City.

There are five points for improving inpatient care that I would
like to emphasize for the Commission's consideration : (1) that the
desired model of medical and health care extends beyond the
divisions of inpatient and outpatient and is a continuity of care
model; (2) that medical care must include psychosocial care, best
handled through case management; (3) that a comprehensive range of
community based social services must be available to permit
patients to leave the inpatient setting when appropriate; (4) that
services for caregivers of persons with AIDS are critical to
support community based care and (5) that federal social and health
policy initiatives support the funding mechanisms necessary for
implementation of these recommendations. :

 

 
 

Testimony by Esther Chachkes

The AIDS epidemic has highlighted all the difficulties and problems
of our health care delivery system. The weaknesses of the system
have been painfully exposed. Current social health and medical
programs, are fragmented with gaps and discontiuities in services.
The patient has to conform to the system, rather than the system
Shaped to fit the needs of the patient. People who are so severely
and desperately ill have a complex relationship with the health
care system because they are so dependent on it. They must feel
that they are in caring hands. In particular, persons with AIDS,
because they are generally young, dying and burdened with stigma,
require a system that individualizes their care and protects them.
Too often the health care system tolerates barriers to service and
encourages sporadic and crisis oriented use of its resources. This
failure to provide services is exacerbated by insufficient funding
for a full range of services, and rigid eligibility requirements,
which restricts access to care. The challenge is to organize a
comprehensive system that is more easily accessible and rationally
managed. The increasing shift from hospital based services to
services in ambulatory care settings inclusive of home makes it
even more imperative that we begin to develop these approaches.

Continuity of Care

A continuity of care model offers a coordinated and comprehensive
approach that encourages long range planning and the provision of
medical and community support services in a more consistent and
reliable way.

Continuity of care has two important aspects: maintaining contact
with the patient through an identified health care provider and
team throughout all phases of the illness in order to ensure an
individualized medical plan that is best suited for the patient;
and coordinating the range of services needed by the patient to
maintain optimal physical and social functioning.

In a continuity of care model, an AIDS patient can be followed from
the time he or she is known to the health care system until service
is no longer needed, generally until death. The patient can be
seen when inpatient, in ambulatory care clinics, in doctor's
private offices, in the emergency room and at home, wherever health
care is delivered. The patient is never defined by location or
service - in other words, a medical patient, a psychiatric patient,
an inpatient or a clinic patient. These distinctions become less
meaningful as patients are defined by their unique needs.

Psychosocial Care and Case Management

Increasingly, case management is offered as the means to
maintaining a continuity of care approach. Case management has
many definitions. I would like to promote a view of case
management that does not limit it to resource management but
broadens the concept to include a psychosocial approach.
Psychosocial refers to the psychological and social needs of the
patient. Most health care providers are concerned about these
aspects of a patient's situation. This is based on an historic

 

 
 

 

Testimony by Esther Chachkes

recognition that inpatient medical and health care cannot be
successful unless the psychological and social needs of the patient
are understood and addressed. Our care must support the social
well-being and quality of life of the individual which includes all
aspects of life in the community - the ability to perform the tasks
of daily life, to maintain significant and meaningful social
relationships with others, to hold one's established flace in the
community and to retain the levels of independence and autonomy
that are necessary to support dignity and self esteem.

Psychosocial counseling is imperative in a case management system
that promotes social well-being and is key to maintaining a
personalized and coordinated service. The case manager who
involves psychosocial issues in planning becomes the critical link
between patient and hospital, offering on-going evaluation and care
plan adjustment that minimizes unnecessary fragmentation. Although
discharge planning and information and referral are essential
aspects of the clinical service when the patient is hospitalized,
psychosocial counseling is the most prominent service utilizing the
major portion of direct service time that is available for each
patient. In addition, services are provided to family and close
friends. This is necessary because it allows the family to carry
its vital role in maintaining the emotional and physical well-
being of the patient.

A number of administrative aspects must be considered in
organizing case management services including:

Staffing Patterns:

In order to support this model, changes must be made in the
traditional staffing patterns of the inpatient/outpatient

division. Social workers and others previously assigned to a
particular ward or clinic are now assigned a panel of patients and
see them wherever they appear for service. To handle this role,
case managers must understand how the systems of service operate in
a variety of settings.

Workload Standards:

Our experience with AIDS patients has already challenged previously
held standards for caseloads. The number of cases that can be
handled by each case manager in this model is less than the number
generally carried in inpatient caseloads or ambulatory care
clinics. Furthermore, because a case management system includes
on-going monitoring of the care plan during the time that the
patient is in the community, the number of inactive cases remains
low. Because of the nature of this illness, while the number of
patients that can be carried is less, the acuity level for each
patient is higher. We do not yet fully understand how many
patients can be carried in a typical panel and how workload figures
should be set. This needs to be tested.

 
 

 

Testimony by Esther Chachkes

Training and Inservice Education:

Staff must be informed about all aspects of the illness. Education
is also effective in helping staff deal with anxiety and negative
attitudes towards persons with AIDS

Staff Morale:

Staff morale is affected by the need to manage a labor intensive
work load, the severity of the illness, the constant death of
patients and the overwhelmingly complex ethical issues that
surround this illness.

It must be noted that almost all persons with AIDS admitted to the
hospital required psychosocial services and the patients’ families
may require help as well, especially when faced with a number of
complex social problems. The limits of continuity of care and case
management have not been defined. In New York City we have found
this open-ended approach costly. The New York State Department of
Health is now embarked on developing a medicaid rate for the care
of AIDS patients that is higher than usual reimbursement with
standards that hospitals must meet in order to qualify for the
rate. These standards include continuity of care and case
management.

A creative continuity of care model is dependent on the relation-
ship of hospital to community organization. This covers a range of
issues from attitudes about persons with AIDS to turf battles and
communication patterns. The strengthening of reiationships with
community based advocacy organizations has been instrumental in
developing the widest network of services and in promoting the
greatest access to them for persons with AIDS. Most hospitals
recognize that community networks are imperative in promoting
cooperative and coordinated action among a variety of community
based agencies of which the hospital is one. This allows for a
distribution of responsibility and makes available a range of
services that can sustain the patient for the period of time that
he or she returns to the community. Hospitals have now taken a
leadership role in this development by helping to identify needs
and to stimulate the development of services. This relationship
with the community brings the hospital closer to the community and
fosters a culturally-sensitive approach, which iS more accepting of
ethnic and racial differences. This is increasingly valued by
urban hospitals. This closer relationship brings the knowledge and
experience of the hospital to the community and affords the
community an opportunity to influence the care given in the
hospital. In some instances, community agency representatives have
been invited to participate in team rounds to help promote a social
health orientation.

Opportunies to augment and enhance team approaches to care are
essential in continuity of care models. Multidisciplinary planning
allows for a care plan that is best suited for the patient. A team
approach enhances staff morale and is critical to good patient
care. In a well functioning team difficult emotional and practical

 

 
 

 

Testimony by Esther Chachkes

issues in patient management can be discussed freely, as can the
ethical dilemmas frequently encountered in working with persons
with AIDS. Ethical decision-making is a shared responsibility and
involves the values and beliefs of all members of the team.
Consultation from ethicists or hospital ethics committees can be

helpful as well.

Continuity of care, coupled with a case management system that
promotes psychosocial treatment is, at present, the most effective
way of providing coordinated services. This approach also affords
access to a more comprehensive range of services. However, because
patients' needs are more easily seen and identified, the gaps in
services are more keenly felt.

Comprehensive Services

Discharge from hospital based care is dependent on the availability
of community based services that can support the person's medical
and social needs when out of the hospital. For example, patients
requiring IV drugs and chemotherapy, experimental drugs,
transfusions and other special treatments and procedures may be
able to receive these in less costly settings than the inpatient
service of an acute hospital. Young families who may be caring for
more than one ill patient need housing that can provide a variety
of services to sustain their life in the community and together.
This includes homemaking, child day care, and community based case
management for the family. Acute hospital care must be
supplemented by health services that include:

-~day hospitals and interim care facilities.

-drug treatment and mental health services

-skilled nursing facilities

-respite services for families and caregivers

-hospice services and terminal care facilities
-transitional housing that offers supportive medical

care and home health aid supports

-child day care and foster care

-enriched housing

~expended homemaking and home care services

-self help and volunteer support programs

-legal services

-income support social welfare services with rapid approval
procedures .

-protective services for individuals who are no longer able
to care for themselves.

-pastoral counseling

The list is a long one. Some of these services are available. For
é¢xample, many communities have agencies that now provide legal
consultation or volunteer services. However, such services as long
‘term care beds are generally not available anywhere in the country,
hospice care is limited, home care services are insufficient and
housing almost non-existent.

 

 
 

 

Testimony by Esther Chachkes

services to Caregivers and Families

It is primarily families and close friends that bear the burdens of
caring for persons with AIDS. These caregivers also need a
responsive health care system. In order for the patient to be
successfully maintained outside of the hospital setting, informal
networks of families and friends should be strengthened. Support
Services must be available and properly funded so that families can
manage the patient and when they are overstressed receive the
necessary help to maintain their caregiving roles. This is
particularly needed when families are caring for an AIDS patient
who has developed neurological complications and can no longer care
for themselves.

A dramatic feature of this illness is that more than one family
member may be ill. The phenomena of the dying family is a

reality. Under these circumstances families need a great deal of
support and a variety of services to maintain themselves and care
for their sick members. Efforts to discharge patients from the
hospital are often bogged down by the inability of families to cope
and the lack of community resources that would enable the patient
to return to the community. Sometimes only a little bit of help can
make the difference between whether a family can take someone home
or the patient must remain in the hospital. For people who are so
desperately ill, it is a grave injustice to spend precious time in
an institution rather than in the community with family and friends.

Funding mechanisms

There have been a number of studies evaluating the costs of caring
for AIDS patients. The general concensus is that this illness is
costly and that the direct cost of inpatient care is high, although
lifetime costs may in fact not be higher than for certain other
illnesses. Particular geographic areas of the country currently
bear a higher burden of these costs because of the number of
persons with AIDS in these communities. In addition, such factors
as type of AIDS patient, stage of illness and presence of dementia
appear to affect the direct cost of care. As the population of
persons with AIDS who are IV drug users increases, the overall
patient profile will be poorer, have less family and community
Supports available to them and have more social problems. This
group of patients is generally sicker at the time of diagnosis and
has a shorter length of life. These conditions increase the cost
to the hospital and discharge planning is more complicated.

It may be that social support services can help to keep the direct
costs of inpatient care down and diminish the overall lifetime cost
of care, but this has not yet been adequately evaluated. The costs
of social support services will vary depending upon whether more or
fewer services are used, how much is borne by families and friends
and whether the quality of services is sufficient to meet the need
of the patient.

Private resources and insurance coverage cannot meet the mounting
costs of medical and social services. Because AIDS is so

 

 
 

 

Testimony by Esther Chachkes

debilitating, most persons with AIDS are eventually unable to work
and frequently lose their insurance benefits. They become
impoverished in order to qualify for public assistance or medicaid.
Others have not had employment histories that were sufficient to
provide coverage. Without proper funding for these services,
persons with AIDS linger in hospitals - with hospitals absorbing
these costs.

The eligibility requirements of financing based on categories such
as age, income status or level out of disability, create
bureaucratic obstacles that keep people of programs and without
services. Furthermore, there are grave ethical concerns related to
providing service by category - service can then be denied by
category and treatment and access to health care based on
eligibility rules rather than health care needs. For example, at
present most persons with chronic and debilitating illnesses are
unable to meet medicare co-payments. or pay for services uncovered
by this insurance. We have examples of programs that provide more
enlightened funding arrangements. Persons with end stage renal
disease are exempted from the two year wait for medicare and
receive this entitlement in six months. Persons with AIDS should
not have to wait longer than three months for this benefit. At

this time, many persons with AIDS die before they become eligible
to receive medicare.

These costs will most probably be cost additive. However, in the
long run the savings in both financial and human terms may be
significant. By supporting a continuum of care we have an
opportunity to minimize the most chaotic and fragmented aspects of
our current system. Funding for coordinated community based
health and social services and for continuity of care models in
hospital based services is necessary if we are to provide care that
protects quality of life. As the problem of funding is addressed,
however, a series of other problems emerge, which will complicate
our efforts to provide care for AIDS patients. Shortages in human
resources in professional and semi-professional categories are
reaching crisis level and will take many years to solve. We have
no national manpower policy, at present, that is addressing this
issue.

In summary, we must be mindful of the indirect cost to society when
health resources are unavailable or when barriers to their use
exist. The quality of life for all citizens is compromised when we
are unable to provide adequate care for a vulnerable segment of our
society. Sick people who do not receive the health care they need
strain the resources of our entire social welfare system and our
neglect of their care diminishes the well-being of our entire
society.

We are challenged to develop new ways to fund social and health
programs and to support a social policy that will encourage long
term planning and a coordinated and comprehensive response to the
AIDS epidemic. Current national health and social policy has been
influenced by an emphasis on cost containment, deregulation and a

 

 
Testimony by Esther Chachkes

limited role for the federal government. Responsibility has
shifted to local governments and the private sector - both groups
clearly unable to carry the extensive burden of care that AIDS
patients require. The AIDS crisis emphasizes the reality that
national problems must be addressed on a national level.

Our experience with AIDS gives us an opportunity to re-examine our
attitudes and priorities and to develop models of service that
legitimize coordinated comprehensive continuity of care - an
approach that all illness demands. In this regard, AIDS has become
the paradigm for a more socially intelligent and caring response.

Thank you for asking me to present this testimony.

a

 
 

 

NEW YORK .T ‘ALTHL AND HOSPITALS CORPORATION

AIDS/ARC Inpatients May 1985 - August 1987

Distribution by Age

41—S0 YRS (16.7%)

51+ YRS (5.0%)

31-40 YRS (48.5%)

 

O-5 YRS (4.4%)
6-20 YRS (0.9%)

21-30 YRS (24.5%)

 

 
 

 

NEW YORK ry ALTH AND HOSPITALS CORPORATION
AIDS/ARC Inpatients May 1985 - August 1987

Distribution by Sex

FEMALE (23.1%)

 

MALE (76.9%)

 

 
 

NUMBER OF REPORTED PATIENTS

29
28
27
26
25
24
23
22
21
20
19
18
17
16
15
14
13
12
11

 

AVERAGE DAILY CENSUS, QUEENS

JANUARY 1986 TO OCTOBER 1987

 

 

 

 

-— Lf
Oe rn
— n y
| y ey h
— nr
4 rR 7 i 7
- 4 nD A
_ rs Mi s
‘
4 Y)
_
= y
q 1 q J qT v qT v i ' q ' v ' v ‘ 4 GF COU
J86 F M A J J A S$ O N OD J87 F M A M J J A S$ 087

CENSUS MONTHS

 
 

 

NUMBER OF REPORTED PATIENTS

52
350
48
46
44
42
40
38
36
34
32

30 -+

28
26
24
22
20
18

AVERAGE DAILY CENSUS, KING'S COUNTY

JANUARY 1986 TO OCTOBER 1987

 

—

—_

— ra fa A

Vy 4 ws

-
“ ~ , u
-
_

 

 

M
i ee Oe ees eee eee ee T T T
J86 F M AM J J A & OF ND VS? F

CENSUS MONTHS

= -

> «

= =

A

 

S 087

 

 
 

 

TESTIMONY BY
LORRAINE TREGDE
EXECUTIVE DIRECTOR, QUEENS HOSPITAL
EXECUTIVE DIRECTOR (ACTING), KINGS COUNTY HOSPITAL CENTER
NEW YORK CITY HEALTH AND HOSPITALS CORPORATION
BEFORE THE

PRESIDENTIAL COMMISSION ON ‘THE

HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

JANUARY 13, 1988

WASHINGTON, D.C.

 

 
 

TESTIMONY BY §°—
LORRAINE TREGDE
EXECUTIVE DIRECTOR, QUEENS HOSPITAL
EXECUTIVE DIRECTOR (ACTING), KINGS COUNTY HOSPITAL CENTER
NEW YORK CITY HEALTH AND HOSPITALS CORPORATION
BEFORE THE
_ PRESIDENTIAL COMMISSION ON THE
HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

Chairperson Conway-Welch, distinguished members of the
Commission, my name is Lorraine Tregde and I am pleased to have

the opportunity to appear before you today.

t am the Executive Director of Queens. Hospital Center and the
acting Executive Director of Kings County Hospital, both of which
are acute care public hospitals and member facilities of the New

York City Health and Hospitals Corporation (HHC).

HHC, which operates 11 acute care hospitals, five long term care
facilities, and over 40 community-based ambulatory care centers,
is the largest municipal hospital system in the nation

and the major health care provider for New York City. Our
purpose and tradition is to provide quality health care to all
regardless of their ability to pay. The vast majority of our

patient population are from low-income and minority communities.

The tragedy of AIDS, while rampant in many cities throughout
the nation, is most starkly vivid in New York City. More than
12,000 cases of CDC-defined AIDS have been reported in New York
City thus far, representing a phenomenal 27 percent of the

national total. Of the 12,000 cases there have been nearly 7,000
 

 

deaths. Far more ominous is the estimate that more than 400,000

New Yorkers are HIV-infected including 50 to 60 percent of the

City's estimated 200,000 IV drug abusers.

Against an already distressing picture is the projection by the
Health Department that by 1991, over 60,000 people will have
developed full-scale AIDS in New York City of which 40,000 will
have died. This does not include the increasing number of IV
drug abusers who will die from other diseases related to
HIV-infection but which have yet to be officially classified as
AIDS. On a national basis, the ravage of AIDS is projected to be
equally as devastating. By 1991, the incidence of AIDS across
the country will have risen to 270,000 cases, with 179,000

deaths.

From the onset of the AIDS epidemic, HHC has provided and will
continue to provide AIDS-related assessment, inpatient and out-
patient medical care and extended care services to all persons
in need. As a result, HHC provides inpatient care for more than
one-third of the City's hospitalized AIDS patients while having
less than 22 percent of the City's total medical/surgical care
beds. Towards the end of 1987, HHC's average daily census of
AIDS patients was 420. Seventeen percent of these patients were
hospitalized at Queens and Kings County Hospital Centers which

are the respective major health care facilities for the boroughs

of Queens and Brooklyn.

 

 

 

 
 

 

As the plight of AIDS makes deeper inroads among the poor and
minority communities, the burden of the HHC will increase even
more. To the extent that HHC can not expand its services
appropriately and rapidly to meet this need, the entire City's
health care system will be rendered ineffective if not completely
paralyzed. As Chairperson of the National Association of Public
Hospitals I can attest to the fact that this increasing burden

on public hospitals is being felt across the country. -

To address the national problem of AIDS with any sincere hope of
resolution will require a tremendous, perhaps unprecedented,
collaborative program by health care policy-makers, providers,
and health related agencies at the Federal, State and local
levels. The effort must be initiated and supported by the
Federal government if it is to be cohesive and doable.

Further, the effort must place equal emphasis on three fronts:
education, medical care, and research. Failure to attack these
fronts concomitantly and with equal resolve will result in

continued human suffering beyond our greatest fears.

I am confident that the Commission will hear testimony today
that will focus on the multiplicity of issues posed by AIDS
and which will offer recommendations regarding these three
fronts. Given the particular demographics and epidemiology of
the AIDS patient population in HHC facilities, I wish to focus

primarily on key financial issues of AIDS inpatient care.

 

 
 

 

Approximately 75 percent of our AIDS patients contracted the
virus as a result of intravenous drug use - either by direct IV
use, sexual contact with an IV drug abuser or by being born to

an IV drug abuser. By stark contrast, in New York City as a
whole, only 30 per cent of all AIDS cases are related to IV

drug use while 57 percent are related to male homosexual/bisexual

activity.

Demographically, 54 percent of the AIDS Patients in HHC
facilities are black, 35 percent are hispanic and 11 percent are
white. The implications of an inpatient population which is
mostly poor and having a dual diagnosis of AIDS and IV drug abuse
are compelling. These patients will have the least in the way of
social support systems and will be most likely to be a member of
disintegrating family, and, in the case of children with AIDS,
will often already be struggling under the burden of a mother

who is a drug abuser or the sexual partner of one.

Clearly, AIDS is a complex disease which, more often than not,
requires the' full resources of an acute care hospital to meet the
range of medical, social and psychological needs of the patient.
Because of their relatively young age and the high mortality

rate associated with AIDS, care of these patients will demand not
only the special skills needed for patients in general, but also

greater level of compassion and sensitivity.

 
 

 

As was anticipated, the level of intensity in providing these
services has placed a tremendous strain on the care givers. As
the volume of AIDS patients increase, staff “burn-out” threatens
the very essence of staff commitment and professionalism - the

driving forice of quality care.

To meet this challenge, HHC has developed an interdisciplinary
approach with physicians (infectious disease and hemotology
specialists) psychiatrists, nurse clinicians and social workers
as part of the care provider team. In addition to coordinating
the total clinical management of the AIDS patient including
decisions regarding housing, legal issues, bereavement
counseling etc., the AIDS Team provides an organized opportunity
for staff to express their own concerns and fears, and an
opportunity to "refuel" their commitment and dedication.
Obviously, providing care through this interdisciplinary approach
is more expensive than traditional inpatient care methodologies.
However, our experience has shown that it is the only way to
provide meaningful dignified quality care to AIDS patients whose
needs are quite similar to those of frail elderly persons or

patients with other forms of terminal illness.

While the interdisciplinary approach in the management of AIDS
patients is 'proving to be effective, the shortcomings in the
present health care financing system will severely limit the
ability of HHC to effectively meet the needs of the increasing

\

AIDS population.

 

 
 

For example, as state’ ‘earlier, HHC provides more than a third
of all inpatient care for the City's AIDS patients. Seventy
percent of these patients are covered by Medicaid. However,

a recent study conducted by HHC indicates that the average
minimum per diem cost of treating an AIDS inpatient ($800) is

25 percent more than the cost of treating a non-AIDS patient
($650). If costs for consultation services by physician
specialists and non-surgical procedures are included, the actual
per diem costs associated with AIDS inpatient care would be
significantly higher. Clearly, Medicaid reimbursement for AIDS

inpatient care is not adequate measured against actual costs.

Secondly, of HHC's total number of AIDS inpatients, twelve
percent are self-pay or otherwise represent unreimbursed costs

of $36 million a year.

A significant number of these patients would be eligible for
Medicare, but for the fact that 50 to 70 percent of AIDS
patients die within two years of diagnosis. Present regulations
provide for a two year waiting period for Medicare eligibility
after they are certified as disabled. Quite clearly, denial

of this entitlement renders the AIDS patient and his/her family
to a completely impoverished status. Obviously, this status of
impoverishment mitigates against voluntary: and private hospitals’

readily acceptance of AIDS patients.

J

, /
As a family disease, the tragedy of a generation of babies being

born with the AIDS virus who will remain in the hospital well

 
 

 

beyond medical necessity because they are orphaned, abandoned, or
lack family structures, poses yet another problem. Half of the
City's pediatric AIDS patients have been treated at HHC
facilities. The vast majority of these children suffer from
illness and developmental disabilities. These problems, coupled
with stigmatization make it very difficult ‘to find foster

care placements. HHC has absorbed the cost of “boarding” these
babies and has poured additional resources into their care to
assure that they receive the nurturing and affection necessary

for normal development.

With the intense efforts of other City agencies, we have been
successful in foster placement of many of these. infants.

However, it has become alarmingly clear, that despite the efforts
being made by HHC facilities, it cannot be sustained without |
additional funding. Furthermore, such additional funding would
enable the hospital and the appropriate City agencies to develop
a comprehensive program to achieve the optimal goal of infant
going home with the natural or foster parent at the earliest time

possible.

It can not be overstated that. AIDS is a national problem that
will require bold and definitive national action. It is clear
from HHC's shifting epidemiology of AIDS patients that a massive
assault must be launched on the problem of IV drug abuse - the
City's major contributor to the increase in AIDS. The Federal
government must make funding available to the State, and quickly

to dramatically expand treatment resources for addicts. There

 

 
 

 

are only 30,000 methadone maintenance-slots for 200,000 heroin

abusers who live in the City. The problem is clear.

The Federal government must also seek the enactment of
legislation that will remove AIDS patients from the mandatory
two-year waiting period for eligibility as was done for patients
suffering from end-stage renal disease.

reat

\

\,

\that a DRG must be developed for AIDS

Finally, we firmly believe
which reflects a closer relationship between the reimbursable
rate and the actual costs associated with the provision of care
to AIDS patients. Failure to do so will result in a widening gap
between the public hospitals' ability to fulfill their commitment
to AIDS patients. In the apeendd Se a strong viable public

‘hospital system, there may be no hope.

In the absence of hope, Kings County Hospital Center, as one
public facility, may be forced to remove the following words
which appear boldly over the entrance of our main building: "LET
ALL WHO SERVE HERE REMEMBER THIS BUILDING IS DEDICATED BY THE
CITY OF NEW YORK TO THE CARE OF ALL WHO ARE HELPLESS AND

AFFLICTED. THIS BEFORE ALL ELSE.”

Thank you.

 
 

 

NiW YORK C:ilSY LTH AND HOSPITALS CORPORATION
AIDS/ARC Inpatients May 1985 - August 1987

Distribution by Risk Behavior
OTHER (7.8%)

BLOOD PRODUCTS (0.7%)
PEDIATRICS (4.1%)

GAY/BI, NOT IVDA (15.9%)

SEX PARTNER/RISK (3.5%)

GAY/BI, IVDA (6.7%)

 

IVDA (61.3%)

 

 
 

EE

NEW YORK T.T* \LTH AND HOSPITALS CORPORATION
AIDS/ARC Inpatients May 1985 - August 1987
Distribution by Ethnicity

OTHER (0.8%)

 

WHITE (11.9%)

 

 

BLACK (51.7%)

 

HISPANIC (35.5%) .

 

 
 

 

ZanubP Upyrihar
lecer Yowk

0?
(ew
a

“tt

United Sites Sonat”
Washington. DE

January 4, 1988

Dear Ms. Tregde:

My visit to your hospital was an eye-opening
experience, and I thank you for your time and
courtesy.

Oaths are things often trifled with. You
and your colleagues, however, demonstrate the
highest living and heroic standards in the
carrying out of your sacred oath.. Your compassion
and hard work are inspiring and touching.

I would ask that we continue to be in touch
on the efforts and resources needed from Washington
to win the fight against AIDS.

Again, thank you..

Best,
aos

Ms. Lorraine Tregde

Acting Executive Director
Kings County Hospital Center
451 Clarkson Avenue
Brooklyn, NY 11203

 

 
 

NUMBER OF REPORTED PATIENTS

440

420

400

380

360

340

320

300

280

260

240

220

 

CORKPORATE—WIDE AVERAGE. DAILY CENSUS

JANUARY 1986 TO OCTOBER 1987

 

 

 

 

 

T
J86 F MAM J JY A S$ O N

T T T T T T_T T T 1 T T
D J87 F M AM JS JS OA

CENSUS MONTHS

 

 
 

 

NUMBER OF REPORTEO PATIENTS

AVERAGE DAILY CENSUS, BELLEVUE

JANUARY 1986 TO OCTOBER 1987

 

130

120 —-

110 -

100 -

70 -

60 -

50 -

 

 

 

GF BO OG QD
J A S O N O J87 F M A M JS JS AS O87

CENSUS MONTHS

 

 
 

 

NUMBER OF REPORTED PATIENTS

35

15

AVERAGE DAILY CENSUS, BRONX MUNICIPAL

JANUARY 1986 TO OCTOBER 1987

 

 

 

 

 

q ‘ t t ' ' T q U q t ' q

TTT
466 F MAM J J A S O N D J87 F MAM J J A

CENSUS MONTHS

 

 
 

NUMBER OF REPORTED PATIENTS

 

AVERAGE DAILY CENSUS, CONEY

JANUARY 1986 TO OCTOBER 1987

ISLAND

 

-_ -_— = wt
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A S O N OD JB? F M A

ah

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-4

. 4
«J

CENSUS MONTHS

 

 
 

NUMBER OF REPORTED PATIENTS

30

28

26

24

22
20

18

2

14

12

10

J86 F M A

AVERAGE DAILY CENSUS, ELMHURST

JANUARY 1986 TO OCTOBER 1987

 

 

 

 

' ' q 1 q ' t ' ' ' '

rr a |
3S O N OD J87 F M AM g

= -
be
om
>

' CENSUS MONTHS

 

 
 

NUMBER OF REPORTED PATIENTS

 

AVERAGE DAILY CENSUS, HARLEM

JANUARY 1986 TO OCTOBER 1987

 

70

65 -

60 -

55 -

45 -

40 -

35 -

 

23 +

20

if)
"a

al

vy

 

 

T
J66 F M AM J J A S OF N D JB7 F

v ' q 1 t Ls q 4 ‘ ‘ 4

ay
-_
-

z-
> -
=
&

CENSUS MONTHS

 

 
 

NUMBER OF REPORTED PATIENTS

35
34
33
32
St
30
29
28
27
26
25
24
23
22
21
20
ts
18

AVERAGE DAILY CENSUS, LINCOLN

JANUARY 1986 TO OCIOBER 1987

 

 

 

a

 

 

 

t TT T T T_T

J A S O N OD J87
‘CENSUS MONTHS

T_T
F eM A WM

 

 

 
 

 

NUMBER OF REPORTED PATIENTS

36

34

32

30

26

26

24

22

20

+

14

12

AVERAGE DAILY CENSUS, METROPOLITAN

JANUARY 1986 TO OCTOBER 1987 |

AY

if

Vy]

 

 

7 q v qT ' q

—
=

v rr a
J86 F M A M J J A S OF N D J87 F M AM JS

CENSUS MONTHS

A .

 

S 087

 

 
 

 

ONT

NUMBER OF REPORTED ParTIE

AVERAGE DAILY CENSUS, NORTH CNTRL BRONX

JANUARY 1986 TO OCTOBER 1987

28
27
26
25
24
23
22
21
20
19
18
17
16
15
14
13
12
11

10 -

 

 

 

 

es ee eee ees ee eee ee eee ees eee eee meen eee |
J A S O N D J87 F M AM JF J A’ § 087

CENSUS MONTHS

 

 
 

 

KINGS COUNTY HOSPITAL CENTER
PROGRAMS AND SERVICES FOR AIDS PATIENTS

GENERAL CARE

HIV Counseling and Testing is made available to all women at risk
through the Family Planning, Prenatal, Pregnancy Interuption and STD
clinics. These clinics experience more than 25,000 patient visits
per year. (Funded partially by a grant.)

The Haitian Prenatal Outreach program offers special services to this
group of pregnant women. It is. staffed by Haitian physicians and
nurses who, in addition to speaking Creole, are aware of the unique
medical risks (T.B., hepatitis) found in this population. The
prevalence of HIV positive in the Haitian commonly is 5%. (Hospital
funded )

The AIDS Team plays a vital role in the coordinated management of
AIDS patients. The Team provides support services to an average of
40-50 patients at any given time. (Funded by HHC)

 

Pediatric Ambulatory Care Services have been consolidated at
University Hospital (as a result of grant funding). The clinic has
experienced over 800 patient visits during 1987.

MENTAL HEALTH

Kings County Hospital Center maintains a 65 bed inpatient unit and
several outpatient clinics for addictive disease patients. Last year
the clinics experienced 180,000 patient visits (2,000 patients). At
any one time, there are 100 cases of ARC or AIDS in the clinic
population.

Infant and Child Behavior Laboratory

The Infant and Child Behavior Laboratory, directed by Joan Hittleman,
Ph.D. is both a research and clinical unit. The current research
includes the neurodevelopmental assessment and follow-up of infants
exposed to HIV infection in utero and of infants born weighing less
than 1,000 grams. The clinical unit screens all high risk infants
born at University Hospital and KCHC, including children born
weighing less than 1250 grams, those infected with the AIDS virus,
those exposed to drugs in utero, those with genetic abnormalities and
those with severe neurological disorders. In addition, infants
between the ages of 6 months and 3 year who are not meeting their
developmental milestones are referred by their pediatricians.

 

 
 

 

Infants receive a neurodevelopmental assessment, are referred for
appropriate treatment, including early intervention and further
diagnostic evaluation. There are approximately 400 patient visits
per year.

Infant and Child Learning Center: Early intervention program

The Infant and Child Learning Center, is directed by Joan Hittleman,
Ph.D. and Aruna Parekh, M.D., is a hospital-based early intervention
program designed for children, birth to 5 years, who have
developmental disabilities and medical involvement. These include
HIV infected children, premature infants with respiratory
difficulties and infants with severe neurological problems. By being
hospital-based, the program can continue to serve these children
during their repeated hospitalizations. The program for the HIV
infected children includes daily screening by a nurse. Children
receive special education, speech therapy, physical therapy and
occupational therapy. Transportation is provided for mothers and
children. There are currently 30 children enrolled, 16 with HIV
infection.

VLD/jma

 

 
 

 

JAN @8 ’88 17:38 QUEENS HSPTL. CNTR. P.2

FROM:

DATE:

SUBJECT:

QUEENS HOSPITAL CENTER

New York City Health And Hospitals Corporation = sy - Affiliated with

(718) 990-3377 Heaith Sciences Center /SUNY Stony Brook

C 82-68 164th Street, Jamaica, New York 11432 Long Island Jewish - Hillside Medical Center

Vincent Dyer
Associate Director
Community Relations

Katie Dolan

Associate Ex ve Director
Professional Services
January 8, 1988

AIDS Testimony

SS ee we Oe 2 Se SS SS ST BS TSS Se see SSeS SSS SSS SSS SS
ne Oe Ge Ge ee ee ee ee ee ee ee ee ee ee ae 8 ee oe ee ae Se ee ae a ae ER DG ee ee ee ee ee ee re eee oe eee

As we discussed, here are some issues/statistics relating to
treatment of AIDS patients at QHC:

I. AIDS Patient Population at QOHC:

II.

Inpatient ADC - 30, 3-5 of which are pediatric patients
80% of Adults are IV Drug Abusers

75% are males

Services provided:

1)

2)

3)

4)

AIDS Interdisciplinary Team: (consisting of Social
Workers, Nurses, Physician Assistant, Infectious
Discase and Hematology Specialists, plus Psychiatrist)
follows all inpatients and provides counselling, family
support, and consultation/recommendations to primary
care providers.

 

Immunclogy Clinic: A separate Immunology Clinic was
recently established to ensure that outpatients with
AIDS receive ongoing services and continuity of care.

Community Education: A great deal of emphasis is being
placed on community/patient education, particularly in
Methadone Maintenance, Drug Detoxification, and
Prenatal Substance Abuse Programs.

HIV Testing: A new program offering HIV counselling
testing to women in the Hospital's OB/GYN Clinics has
been established.

Administrative Issues Relating to Treatment of AIDS
Patients in HHC Facilities

1)

Revision in Infection Control Practices: The recent CDC
recommendations to treat all hospital patients as
potentially infectious have led to a variety of changes
in infection control practices:

 

 
 

 

JAN @8 ’88 17°39 QUEENS HSPTL. CNTR. P.3

Vineent Dyer

Page 2

2)

- Phlebotomists are now changing gloves between each
patient. . ;

- Use of goggles, masks, and gowns has been expanded.

Such universal precautions have led to a tremendous
increase in the use of disposables and, as a result,
temporary shortages of gloves have been experienced in
many institutions. These changes also translate into
substantial additional expenditures for hospitals.

Review Agencies have Increased Regulations/Surveiilance

Relating to AIDS Patients

In New York State, for example, special confidentiality
laws have been established regarding AIDS patients.
The OHSM and civil rights groups thoroughly investigate

 

complaints relatino-to tne care of AIDS patients I
hospitals.

The Occupational Safety and Health Administration
(OHSA) has recently announced that its enforcement and
inspection activities will be expanded to evaluate
hospital's adherence to the new CDC guidelines. These
regulatory reviews help ensure that the rights of both
AIDS patients and hospital employees are protected.
However, they also require a substantial amount of
additional administrative time to document hospital's
adherence to changing regulations to investigate
complaints and to document appropriate inservicing of
hospital employees.

Discrete Units Vs. Scattered Beds

A major ongoing debate has been whether AIDS patients
are best served by separate, discrete units or by a
"scatter bed" approach. A discrete unit permits
consolidation of social-psycho support services allows
groups conselling, and permits a higher concentration
of nursing/medical support. However, discrete units
are sometimes difficult to staff both because of the
fears associated with treating AIDS patients and
because of the terminal nature of the disease. In
addition, there are concerns about whether discrete
units exacerbate the stigma associated with AIDS.

In NYS, higher reimbursement rates for hospitals have
been tied to creation of discrete units and to major
hospital construction to create AIDS units with more
stringent physical plant requirements. These include
creation of 2-bedded rooms (4 bedded rooms are
permitted under standard new construction guidelines),
separate day rooms/treatment rooms, etc.

 

 
 

 

JAN 68 ’86 17:39 QUEENS HSPTL. CNTR. P.4

Vincent Dyer

Page 3
Over Concerning Staff/Community Fears Regarding AIDS

Patients

 

The staff in public hospitals have been caring for AIDS
patients since F960 and are generally informed and ~~~ ~~
aware of Che methods of transmission Of ALUS. However,
we occasionally deal with the phlebotomist who avoids
AIDS patients or the physician who refuses to treat an
AIDS patient. Generally however, our major problems
occur with services provided to AIDS patients by
non-hospital employees. Car service staff have refused
to transport AIDS patients. For example mare recently,——-
we have encountered mandates from telecommunication
systems contractors, who require that there be no AIDS
patients in the rooms where they are working.

Smoking and AIDS Patients

The public hospitals in Ny¢C have, like other hospitals
throughout the Country, been considering a ban on
smoking throughout the facility. However, with
terminal patients, such as AIDS patients, this proposed
policy seems overly restiriclive.

 

 
 

 

 

_ Testimony before the
Presidential Commission on the Human
‘Immunodeficiency Virus Epidemic

January 13, 1988
Washington, D.C.

Richard N. Yezzo
“ President
St. Clare's Hospital and Health Center
New York, New York

 

 
 

 

I am Richard N. Yezzo, President of St. Clare's Hospital and
Health Center in New York City. I appreciate this opportunity to
appear before the Presidential Commission on the Human

Immunodeficiency Virus Epidemic.

~~ St. Clare's Hospital is a 250 bed not-for-profit hospital
located on the west side of midtown Manhattan in an area formerly
known as Hell's Kitchen. In 1985, in response to a directive
from His Eminence John Cardinal O'Connor, Archbishop of New York
and a member of this Commission, St. Clare's Hospital initiated a
comprehensive care program for individuals with HIV disease. This
program, known as the Spellman Center for HIV Related Disease,
currently consists of a 60 bed dedicated acute care unit
(including a 10 bed unit for prisoners with AIDS); a dedicated
outpatient clinic; an AZT program; and a dental clinic. In the
near future, the Spellman Center will add a methadone maintenance
treatment program for intravenous drug abusers who are HIV
positive, an 18 bed residence for homeless individuals with AIDS
or ARC, and a 30 bed neuro-psychiatric or chronic care unit for
individuals with AIDS suffering from dementia and other

neurological conditions associated with HIV.

The care of individuals infected with HIV is no longer the
problem of San Francisco, New York City, and a few other large
urban areas. It is a national problem which will soon affect
every community. It is predicted that by 1991, just three short
years from now, 140,000 AIDS patients in the United States (or
80% of all AIDS patients in this country) will be living in areas
other than San Francisco and New York City. By 1991, 13,854

hospital beds or two percent of the Country's medical-surgical

 

 
 

 

-2-
beds will be occupied by AIDS patients. “’The care of AIDS
patients will account for nearly three percent of total hospital
costs and will exceed 3.5 billion dollars in 1991.

The Centers for Disease Control has estimated that the
national cost per day for an AIDS patient is $830 per day, with
significant variation in cost existing between regions. In New
York City, where due to various factors, much of the care is
still being provided in the acute care setting, the cost of
managing an AIDS patient from diagnosis to death is estimated to
be $150,000. On the other hand, in San Francisco this figure is
approximately $30,000. ‘The lower cost in San Francisco is due to
case mix, transmission category, and other factors which have
facilitated the successful implementation of the continuum of
care model which enables an individual infected with AIDS to be

4
cared for in the lowest cost and most appropriate setting.

The high costs associated with hospitalization of AIDS
patients is due to the nature of the disease. Individuals with
AIDS who are in an acute stage utilize more hospital resources
than other medical-surgical patients. For example, AIDS patients
require three times the nursing care needed by other patients,
they have a high utilization of ancillary services, and are
generally in need of specialized medical services. Additionally,
AIDS patients, their families and hospital staff require psycho-
social support services and education programs. These services

must be provided if quality care is to be rendered to persons

with AIDS.

If hospitals are to provide quality care to individuals

 

 
 

 

-3-
infected with HIV, support is needed €rom’the federal, state and
local governments as well as other third party payors. A recent
American Hospital Association survey has shown that 40% of
hospital costs for AIDS patients are not reimbursed and
consequently a hospital has an average revenue loss of $5,000 per
admission of an AIDS patient. Hospitals, operating in an
increasingly competitive market, are finding it difficult to
absorb these losses. As the number of AIDS patients increase,
the situation will only become worse. Steps must be taken now to

assist not for profit hospitals to continue their mission to care

for all persons in need regardless of illness or ability to pay.

To assist hospitals in caring for individuals with AIDS, the
federal government should consider the following recommendations:

1. Reviewing and revising the services covered by the
Medicaid program as well as increasing the reimbursement rates
for care provided to individuals with AIDS or ARC. Medicaid is
a major source of coverage for individuals with AIDS. At
present, approximately 40% of all AIDS patients are covered
through the Medicaid program and 23% of all direct
medical costs are reimbursed through this program. To develop an
immediate response to the AIDS epidemic and to ensure that

hospitals provide quality care to individuals with AIDS,

adjustments to the Medicaid program must be made.

Medicaid must provide a higher hospital reimbursement
rate for the care of individuals with AIDS. Such a program has
been implemented in New York State and has facilitated the
development of comprehensive programs while assisting hospitals

in providing quality care. Several hospitals in New York State

 

 
 

-4-

La
ye we eo?

have been designated by the New York State Department of Health
as comprehensive AIDS centers. As a comprehensive AIDS center, a
hospital receives an enhanced Medicaid reimbursement rate and in
return the hospital must provide and/or arrange for individuals
with AIDS to receive the level of services they require~- whether
acute care, community based social services, psychological
support, etc.. As far as I know this program is unique to New
York State's Medicaid program and therefore the ability of
“ hospitals in other states to respond in a similar fashion is
compromised by the lack of responsiveness on the part of their

state's Medicaid program and other third party payers.

A higher Medicaid reimbursement rate is critical if
not-for-profit voluntary hospitals are to provide quality care.
A survey of U.S. public and private teaching hospitals conducted
by the National Association of Public Hospitals revealed that
there are substantial regional variations in reimbursement rates
for care provided to patients with AIDS. In some southern states
where the Medicaid program is restrictive and covers a minimal
number of services, hospitals are paid only 25% of a patient's
total inpatient costs. As the number of AIDS patients increase,
hospitals, especially those in states with restrictive Medicaid

programs, will find it increasingly difficult to absorb losses

incurred in caring for individuals with AIDS.

b) Hospitals do not operate in a vacuum and if
appropriate quality care is to be provided, other health care
providers, such as long term care facilities and home health

agencies, must also be adequately reimbursed. For example, a

 

 
 

 

~5=
major problem in hospital discharge planning is locating subacute
facilities willing to take individuals with AIDS. In most
states, nursing homes under the Medicaid program are reimbursed
approximately $50 per day per resident and only a few state
Medicaid programs reimbursement rates for long term care exceeds
$70 per day per resident. However, it costs an estimated $200
per day to care for an AIDS patient in a nursing home or hospice
setting. The end result of inadequate reimbursement for
community based health care services or long term care facilities

is that patients remain in hospitals longer than medically

necessary with higher costs incurred.

c) The federal government mandates that states, as
part of their Medicaid program, provide certain services with an
option to provide coverage for 28 other services. Consequently,
the Medicaid program varies from state to state with some states
providing most of the optional services while other states limit

the program to federally mandated services only.

As previously stated, the continuum of care model with
an emphasis on home care and other community based services
appears to be the most cost-effective and appropriate way to care
for individuals with AIDS. If this model is to be successfully
implemented and uniform throughout the United States, pressure
must be brought upon states to provide Medicaid coverage for
optional services, especially home care. By decreasing the
reliance on hospital based services, resulting in a lower length
of stay, a tremendous savings can be achieved through the use of

community based services and subacute facilities.

 

 
 

 

=-6=

ad) The federal government should strongly urge state
Medicaid programs to develop alternative, innovative programs
that would not traditionally be considered eligible for federal
Medicaid funds and apply for Medicaid waivers. For example,
these programs would include sub-acute or step down units and
residential facilities. This would facilitate the implementation
of community based social service programs particularly needed by
individuals with AIDS or ARC and ultimately result in a savings
for the Medicaid program by decreasing the length of

hospitalization.

2. The federal government should exempt individuals
with AIDS from the 24 month waiting period required by the
Medicare Disability Program. Many individuals with AIDS can meet
the medical disability and work history eligibility requirements
of the Medicare Disability Progran. However, they are denied
coverage because the program stipulates that coverage can not
begin until five months from the onset of the disability and 24
months from the receipt of cash benefits- or a total of 29
months. Individuals with AIDS can not wait 29 months. For
individuals with AIDS, the prognosis for survival varies from 12
to 18 months for those with opportunistic infections. For those
with Kaposi Sarcoma the prognosis for survival is two to five
years. If a number of individuals with AIDS were covered by the
Medicare Disability Program, it would alleviate some of the

burden assumed by the Medicaid program and will also allow for

the reallocation of Medicaid funds to other needed services.

 

 
 

 

-7J=-

3. If alternative programs and community based
services are to be developed, hospitals and other agencies must
have increased access to capital. For example, many hospitals
are interested in developing residences for homeless individuals
with AIDS, day care programs, step down units, etc., but lack the
capital needed for start-up costs and renovations. To encourage
the development of these community based services and alternative
programs, the federal government should consider creating a
program similar to the Hill-Burton Act to assist hospitals and
other facilities in funding the development of sub-acute care

facilities.

4. The federal government should prohibit the use of
HIV antibody testing for individual health insurance policies as
_well as the denial of health insurance coverage for those at high
risk or seropositive for HIV. As. correctly stated by the
National Academy of Sciences in its report, insurance involves
"covering the costs of a disease and not the support of a
lifestyle." If health insurance companies are allowed to deny
health insurance coverage on the basis of the HIV antibody test
or high risk behavior, it will result in an even larger number of
individuals having no health insurance and, forcing the Medicaid

and Medicare programs and not for profit hospitals to bear the

costs of caring for these uninsured individuals.

CONCLUSION
Before closing, I just want to emphasize that AIDS is a
national problem and each community has the responsibility to

ensure that individuals infected with AIDS receive quality health

 

 
 

 

-B8=_
care. As our health care system “is currently structured,
hospitals are being asked to subsidize the care of individuals
with AIDS. It is becoming increasingly obvious that an effective
response to the AIDS epidemic can not be developed without the
support of the federal government. We, the not for profit
voluntary hospitals, are asking the federal government to make
necessary changes in the Medicaid and Medicare programs which
will enable us to continue to provide quality care to those with
AIDS and ARC. Moreover, these changes will ultimately save the
Medicaid and Medicare program money in that the changes will
result in a decrease reliance on hospital care which is more
expensive than community based or long term care. By modifying
the Medicaid and Medicare programs as well as prohibiting the
denial of individual health insurance coverage by other third
party payors, the responsibility of caring for individuals with

AIDS can be assumed by all.

In making your final report, I would ask that you consider
the role of the 3,323 not for profit voluntary hospitals in
responding to this epidemic and the assistance required if we are

to continue to provide quality care to those with AIDS.

 

 
 

 

6.

7.

FOOTNOTES

CDC AIDS Weekly, NYU Medical Center: Growing Number of
AIDS cases will occur outside High-Rate Cities. November
23, 1987. pg. 14.

Ibid.

John K. Iglehart and Jane K. White, "Policy Makers Grapple
with AIDS Costs and Controversies," Health Progress,
December, 1987, p.18.

David W. Benfer, "Health Care Policy Issues Related to AIDS:
Lessons Learned From the Henry Ford Hospital Experience,"
Henry Ford Hospital Medical Journal, vol. 35, no. 1, 1987,
p. 54.

Judith K. Jenna, "AIDS Management: New Models for Care,"
Health Care Forun, November/December 1987, p. 20

Iglehart and White, p. 18.

CDC AIDS Weekly, JAMA: Public Teaching Hospitals Bear Brunt
of AIDS Costs. October 5, 1987, p. 4

AIDS Alert, Hospitals Finding Nursing Homes Refusing to
Accept AIDS Patients. December 1987, p. 192.

Institute of Medicine, National Academy of Science,
Confronting AIDS: Directions for Public Health, Health Care
and Research. National Academy Press, Washington D.C., 1986
p. 170.

 
 

 

Denver General Hospital
Boston City Hospital
District of Columbia Genera! Hospital

Harris County Hospital District
(Houston)

ssity of Medicine and Dentistry
New Jersey University Hospital
irady Memorial Hospital (Atlanta)
Santa Clara Valley Medical Center
(San Jose)

The Los Angeles County Hospitals
Parkland Memorial Hospital (Dallas)
Truman Medical Center (Kansas City)
San Francisco General Hospital
Bellevue Hospital Center

Bronx Mun:cipal Hospita}

Hospital at Elmhurst
bead oP New York City)

Coney Island Hospital
Harlem Hospital Center
Kings County Hospital Center

Lancoln Medical and Mental
Health Center

Metropolitan Hospital Center
North Central Bronx Hospital
Queens Hospital Center

‘Woodhull Medica! and Mental Health
Center (New York City)

Cook County Hospital

Contre Costa County Health Services
Department

Brackenridge Hospital (Austin)

Wishard Memorial Hospital
Ondianapolis)

Chope Community Hospital (San Mateo)

Alameda County Health Care Services
Agency (Oakland)

Westchester County Medical Center
Milwaukee County Medical Center
Nassau County Medical Center

1 Medical Center at Mernphis

/acifie Medical Center (Seattle)

( wersity of New Mexico Hospital

Haroorview Medical Center, University
of Washington

Fresno County Valley Medica! Center

R E. Thomason General Hospital

Kern Medical Center (Bakersfield)
University of Cincinnati Hospitel
Univeraity of Texas Medica) Branch
Hurley Medical Center (Flint)

San Bernardino County Medical Center
San Joaquin Genera) Hospital (Stockton)

Riverside General Hospital,
Univeratv Medical Center

Spartanburg General Hospital
Charity Hospital at New Orleans
Maricopa Medical Center (Phoenix)
St Louis Regional Medical Center

Memonal Medical Center
(Savannah, GA)

Amarillo Hospital Distnct

Jackson Memorial Hospita) (Miami)
Pontiac General Hospital Pontiac, MI)
$t Paul-Rameey Medica] Center

E. A Conway Memonal Hospital
(Monroe, LA)

Ear] K. Long Memenal! Hospital
(Baton Rouge)

Huey P Long Memonal Hospital
my 8 (Pineville, LA)

Lalhe-Kemp Chanty Hospital
independence. LA}

Moss Regional Hospital
(ake Charles. LA)

Univeraty Medical Center
{Lafavette, LA)

hington-St Tammany Chanty
, Hospital] (Bogalusa, LA}

~ Tampa General Hospital
Erie County Medical Center (Buffalo)
Prince George's Hospita] Center 04D)

 

NATIONAL ASSOCIATION OF PUBLIC HOSPITALS
1001 PENNSYLVANIA AVENUE, NORTHWEST m SUITE 635 @ WASHINGTON, DC 20004 m (202) 347-1136

’
re -, ys ay

Statement of Marc H. Lory

Vice President and Chief Executive Officer
University of Medicine and Dentistry of New Jersey
University Hospital, Newark

Presidential Commission on the Human
Immunodeficiency Virus Epidemic

January 13, 1988

Mr. Chairman, members of the AIDS Commission, thank

you for the opportunity to provide the Commission

with an overview of various approaches to caring

for people with AIDS that have been proposed or
adopted by public hospitals nationally. My name is
Mare Lory. I am Vice President bna Chief Executive
Officer, University of Medicine and Dentistry of
New Jersey, University Hospital, Newark, which is

part of the state's four campus health sciences

university.

University Hospital is a 501 bed public teaching
hospital located in the most impoverished district
of a

struggling city. It is the family physician

for thousands of men, women and children who have

no other means of medical treatment. It acts as

the super~specialist for the eight million

 

 
 

 

residents of New Jersey when tertidry ‘are is needed in areas
Such as cancer, high-risk newborns and trauma. It is the
classroom of the real world for the hundreds of medical Students,
interns and residents who train at the Hospital each year. And
it is struggling on the front lines of our nation's exploding

urban epidemic - AIDS.

On any given day you will find at least 30 AIDS patients in our
beds. We expect to treat over 450 patients by the end of our
fiscal year. We also expect to lose $3-4 million doing so,
because inpatient hospital care is clearly the most expensive and
often the most inappropriate means of treating this patient

population.

Today, I am testifying on behalf of the National Association of
Public Hospitals(NAPH) I serve as Chairperson of the NAPH AIDS
Committee. NAPH is a national organization representing 75 major
hospitals and hospital systems in metropolitan areas across the
United States. NAPH has become the advocate of these and other
“safety net" institutions. That is, our members are the hospitals
that continually provide a significantly disproportionate share
of their services to low income patients, while also functioning
as major providers of a wide range of, emergency and specialized

tertiary services to all residents in their communities.

 

 
 

 

NAPH members such as San Francigco General Hospital, Jackson

Memorial Hospital in Miami, the New York City Health and
Hospitals Corporation, the Los Angeles County Hospital system,
Parkland Memorial Hospital in Dallas and many others have been
among the nation's leaders in the fight against AIDS. These
hospitals have also grown increasingly concerned about how the
provision of AIDS care is affecting their institutions. Many who
have affiliations with major ‘teaching schools are especially
worried. about the possibility that AIDS will erode their medical
residency base as students opt for sites where they see a broad
spectrum of patients, not just people with AIDS/ARC. In fact the
situation of these institutions and that we, as a nation, face
with the AIDS epidemic also have come to epitomize many of the
problems encountered in our current health care system--
problems related to inadequate financing, access to care,
medically disenfranchised populations and individuals alienated
from health care, and the need for service continuity and

comprehensiveness.

I have submitted with my testimony background information on the
impact of AIDS on hospitals in the United States, derived from
NAPH's study of 465 major public and private teaching
institutions in the U.S. Conclusions drawn from our examination
highlight the critical situation faced by urban public hospitals

and other safety net institutions during this epidemic, and

 

 
 

re at
demonstrate why many of these facilities are

 

4

concerned for their

future.

AIDS HOSPITAL UTILIZATION

Public Hospitals treat a disproportionate share of AIDS

patients.

Representing only 38% of the hospitals and 39% of the beds,
public hospitals treated 61% of the AIDS patients accounted

for in our survey.

Public hospitals treat more AIDS IV drug users

than their private sector counterparts.

Thirty-nine percent (39%) of the AIDS patients treated in
public hospitals were IV drug users, while only 21% of those
treated in private hospitals were IV drug users. Veteran's
hospitals reported 28% of their AIDS population were IV drug
users. This AIDS population is a major concern since their
conditions are more complex, thereby placing greater stress
On resources. Moreover, many of these AIDS patients have no

where to go once they no longer require hospital care.

 

 
l.

 

 

Public hospitals treat a large number of children with AIDS.

Of the 222 children (under age 17) accounted for in our
study, 152, or 68% were treated in public hospitals. Care of
these children is often much more expensive than that of
other AIDS patients. Because the parents of many of these
children have AIDS and/or are drug users, children are often
abandoned in hospitals. These "boarder babies" are very
difficult: to place in foster care programs and often spend

their entire lives ‘within the hospital.

COSTS OF AIDS CARE

The cost of caring for AIDS patients is significant.

Using an average cost per AIDS patient per year of $20,320,
for over 18,000 patients estimated to be alive in 1985, we

have estimated that the total cost of inpatient care

. approached $400 million for 1985 alone. As the epidemic

continues to grow (almost 50,000 cases had been diagnosed by

the end of 1987), the costs to the healthcare industry and

to society will coniinpe, t° grow enormously.

/ /
fo]

cy

i,
!

 

 
 

 

|

2. AIDS patient care results in losses to hospitals.

 

The average cost of inpatient care for AIDS patients was
$20,320 per patient per year, while revenues per patient per
year were only $15,424, a loss to hospitals of almost $5,000
per patient as other institutions determine that treating

these patients endangers their solvency.

3. Public hospitals lost more on AIDS patient care than did

other hospitals.

Average cost per patient per year in public hospitals was

$18,900 and revenues per patient per year were just $12,480,

representing a loss of over $6,400 per pati nt.

FINANCING OF AIDS CARE

 

l. Public hospitals treat a very high proportion of uninsured,

unsponsored AIDS patients.

Twenty-six percent (26%) of the AIDS patients treated in
 

 

re ‘4 F

public hospitals fall into the "“selfpay" or “other”

categories, typically proxies for "no-pay". Such a large
percentage of unreimbursed care places a great financial
Strain on hospitals, and can affect services to AIDS and

other patients.

Public hospitals treat very few privately insured patients.

Only 7% of the AIDS patients treated in public hospitals
were covered by private insurance. In private hospitals, 45%
were privately insured. If private hospitals further reduce
their level of uncompensated care, shifting uninsured
patients to public hospitals, those public hospitals will
face an even greater strain. Without adequate distribution
of the AIDS burden they could also become "de facto" AIDS
hospitals, a situation where other institutions recognizing
that they do not want to treat AIDS patients, send these

individuals to the public hospitals.

Medicaid pays for a significantly higher proportion of AIDS

patients in public hospitals.

 

Sixty-two percent (62%) of the AIDS patients treated in

public hospitals were covered by Medicaid, compared with 35%

 
 

 

in private hospitals.

4. Medicaid plays a critical role in the funding of AIDS

patient care.

*Variations in state Medicaid programs result in problems for
hospitals located in states where the Medicaid program covers a

Smaller portion of the poverty population.

f
i ‘

*Hospitals in states with restrictive Medicaid programs (programs
with restrictive eligibility) lost ‘over $7,400. per patient per
year while hospitals in states with more generous Medicaid

programs lost less than $4,000 per patient per year.

*public hospitals in restrictive states were especially hard hit,

losing $358 per day and $11,814 per patient per year.

*In fact, revenues were 92% of costs for private hospitals in
States with restrictive Medicaid programs and only 42% of costs

for public hospitals in these states.

*For hospitals in states with restrictive Medicaid programs, 37%
of the AIDS patient population is "selfpay" or "no pay", while
the corresponding percentage in states with more liberal Medicaid

programs is only 20%. For public hospitals in restrictive states,

 

 
 

 

46% of the AIDS patients treated fall into the "selfpay" and

"other" category.

Findings from our research and other investigations certainly
reinforce the urgency of addressing in a more comprehensive,
organized and effective fashion the financing and delivery of
care to people with AIDS/ARC. Moreover, evidence is indicating
that the high costs of care for these individuals, many of whom
are indigent or have exhausted their insurance and personal
resources, and the accompanying drain on institutional resources,
is creating an intolerable situation for public hospitals serving
AIDS/ARC patients. However, it is within this context that we

must consider how best to cope with AIDS.

In determining which approaches to AIDS care are most effective

we must first consider the situation of each community, the
AIDS/ARC population in that community, and the existing provider
resources. For example, the applicability or value of an
initiative in a large city that has a history of treating many
people with AIDS/ARC may differ significantly from a small town.
Similarly, a community with a substantial proportion of IV drug
users with AIDS/ARC will require a different approach from one
whose predominant AIDS/ARC population is homosexual. Areas where
hospitals are the major providers of preventive and primary care
as well as of inpatient treatment will play a more dominant role

in AIDS care than a city or town that has an extensive network of

 

 
 

 

on

other health care providers and an extended department of health.
These characteristics and related fectors set the guidelines for

identifying ‘appropriate innovations.

“of.

The development of an effective AIDS continuum of care must also
consider a number of aspects unique to this disease. Variations
in how long people with AIDS/ARC live and the different stages of
illness will influence the extent and type of services required.
The need for mental health support for people with AIDS/ARC will
differ from individuals who require treatment for dementia
associated with AIDS/ARC. Prisoner populations may need special
attention, while the indigent and other low income AIDS/ARC
patients will require substantial public sector support.

In an area just beginning to cope with ‘the AIDS epidemic,
organizations and government would need to conduct a thorough
assessment of available resources. Such an effort would include
identifying agencies and institutions already serving targeted
groups, total services avallable, location of services and
related characteristics. Identifying existing community-based

organizations representing high risk groups is also critical to

the development of any effective initiative. Service needs of the
’ ‘ may ' 2,

AIDS/ARC population must be ascertained, and gaps in services

must be identizied.
; ; pe

10

 

 
 

 

Many of the nation's major urban public hospitals, realizing the
vital role they play in this epidemic, have planned or undertaken
creative initiatives to provide services to people with AIDS/ARC.
While these teaching institutions excel in providing specific
AIDS medical treatments, these hospitals have also focused their
efforts on developing comprehensive, coordinated systems of care.
Such systems and their components presented below and derived
from public hospital plans and programs in San Francisco, Los
Angeles, Dallas, New York, and Miami, represent a model that
should be supported and replicated in many communities. We would
be pleased to provide additional information about each of these
programs if the Commission desires.

I,

Components of a Continuum of Care
1. AIDS Prevention, Education and Assessment

The continuum of care should start before the person with
AIDS/ARC ever reaches the inpatient or outpatient unit of a
hospital. It begins with extensive community based education and
prevention programs for all residents, but especially for
identified high risk groups. Such programs can function in
cooperation with or through city or county departments of health,
using existing health care providers. Public hospitals in New
York city, for example have coordinated AIDS assessment

activities through their umbrella organization, the Health and

1}

 

 
 

 

r ‘4 a

Hospitals Corporation. Voluntary testing, screening and
counseling would also take place at this level, with appropriate
referrals for individuals needing treatment, testing positive or
the worried well. An AIDS Hotline should also be considered part

of this and other levels of intervention.

2. Early Intervention into the Health Care System through

 

Outpatient Programs and Clinics

The health care needs of many person with AIDS/ARC initially may
not require inpatient treatment. For. these individuals, the
hospital outpatient department or an outpatient clinic would be
the appropriate initial point of entry into the health care
system. Outpatient programs would also become the key health
care setting for many AIDS/ARC patient throughout the course of

their illness.

The outpatient programs should have the capacity, directly or
indirectly , to provide services and treatment for the broad
range of conditions encountered by these patients. Such program
responsibilities, thus, would include care for at least
infectious diseases, primary health, pulmonary diseases,
opportunistic infections, mental health, oncology, dermatology,
pharmaceutical needs, dental health and, where appropriate health
care needs of specific populations (e.g. pediatric, women). Case

management (discussed below) should also commence during these

12

 

 
 

/

initial contacts for AIDS and AIDS related conditions. San

‘Prancisco General Hospital has successfully integrated many of
‘these components into their service system, while Los Angeles
County/University of Southern California Hospital has developed
an effective outpatient unit initiative to treat AIDS/ARC

patients.
3. Inpatient Care

Under the most ideal program conditions with an established,
successful continuum of care and effective case management,
inpatient treatment would be restricted to those persons with
AIDS/ARC whose conditions, by their severity not available
resources nor patient financial status, warranted such a setting.
The areas of expertise required would include virology,
gastroenterology, pathology, neurology and immunology, as well as

those listed under outpatient care.

The actual configuration for delivery of inpatient care would
depend on- the institution. Some hospitals such as San Francisco
General treat AIDS patients in a unit, where they can concentrate
resources and expertise. Others such as Bellevue would use a
unit to assess inpatient and other service needs, transferring
patients to appropriate specialty units as determined by staff.
Still others, for example Parkland Hospital in Dallas, Texas,

prefer placing AIDS patients directly on oncology, pulmonary,

13

 

 

 

 
 

 

infectious disease or other units rather than establishing a
separate unit. Support for AIDS/ARC treatment should allow
institutions the flexibility of determining which configuration

makes the best use of their resources.

Fundamental to the development of any effective inpatient program
is the capacity to link with and coordinate services rendered
while in the hospital with all other patient care needs. Thus,
medical and/or social work staff must specifically assure,
through a care management plan, case management and other methods
that outpatient, home, community and other non acute care needs

are met as patients complete their course of inpatient treatment.
4. Non-Acute Organized Health Care Settings

The provision of/ well-coordinated, comprehensive acute and
outpatient health care is obviously essential for people
suffering from AIDS/ARC. However, no less important is the
ability to place individuals needing organized subacute care in
appropriate settings. Unfortunately, the severe shortage of beds
in subacute facilities, the higher costs associated with subacute
AIDS/ARC care, and the reluctance of many providers to accept
these patients leaves many hospitals with little choice: retain
them in expensive acute care beds (which cost as much as 80% more
than alternate care) or release patients to a situation where

they do not receive the additional care they require.

14

 

 
 

 

Support for any continuum of care must encourage the development
of as well as provide financial assistance for such care, in
close coordination with other health care services. Moreover,
the course of the illness demands that, like inpatient and
outpatient care, such a program remain flexible in availability
of beds and services. For example, some AIDS/ARC patients should
be placed in a skilled nursing (SNF) or intermediate care (ICF)
environment. Others ina terminal stage of illness may be more
appropriately placed in a hospice. Subpopulations of AIDS/ARC
patients, such as IV drug users, the homeless the mentally ill
and some indigent indiviGuals, may require SNF, ICF and/or day
care, where medications can be supervised, and they can receive
adequate nutrition, psychological services and related support.
The New York “city Health and Hospitals Corporation has
coordinated its AIDS inpatient acute care hospitals with its long
term care facilities so a limited number of AIDS patients can be

transferred to subacute settings.

5. Supervised Residential Care

 

Residential placement for many AIDS/ARC patients is a most
appropriate setting at certain stages of their illness. While
some will need little care, others, such as IV drug users and

those who can receive nursing and related services in their homes

15

 

 
 

 

r 4?

will need organized assistance. Many patients will need at least

housing, nutritional, mental health, social and other support.

This continuum of care component, thus, must include establishing
residential facilities for special subpopulations of AIDS/ARC
patients and others needing sheltered care. Foster care programs
would allow placement of certain pediatric AIDS/ARC patients.
Visiting nurse programs for in-home treatment and for monitoring
health care needs would also occur through such services.
Parkland Hospital in Dallas, Texas, has initiated a program for
in-home care of indigent AIDS/ARC patients using visitation

nurses.

6. AIDS/ARC Case Management

Case management, the systematic coordination of all care, is a
fundamental component of a successful AIDS/ARC services program.
Occurring at all levels of care, case management is the linchpin
necessary to assure adequate AIDS/ARC care and to. keep
inappropriate utilization to a minimum. Many of the public
hospitals have incorporated this element into their AIDS

initiatives.

Case management responsibilities are extensive and cover health

care planning, implementation and assessment for each AIDS/ARC

16

 

 
 

yo a:

patient. Case managers must also ‘assure that patients have
access to financial and service resources; client needs, from
diagnosis to death are met; gaps in the continuum of care are
closed. Other case management duties include:

© promoting client independence;

° responsibility for the patient's written care management

plan and effective implementation of the plan;

o overseeing and brokering medical and mental health services;
and
o acting as client liaison with various professionals and

health care organizations in the continuum.

7. Staffing for the AIDS/ARC Continuum of Care

The AIDS/ARC continuum of care requires extensive and detailed
consideration of necessary staffing and, equally important, the
psychological and other needs of staff caring for AIDS/ARC
patients. Such initiatives must incorporate a broad array of
medical and non medical professionals and volunteérs. Moreover,
the very stressful nature of this care, at all levels, will, if
left unattended, lead to burn out, and difficulty in retaining

necessary personnel and performing necessary duties.

The multidisciplinary staffing should include professionals from
areas identified under inpatient and outpatient care. Nursing

and mental health professionals are particularly important

17

 

 
é ‘

throughout all levels of care as are individuals with social work
expertise. Most importantly, these individuals must be willing
to work within an integrated, multidisciplinary model of care.

To address staff concerns and minimize staff burnout, health care
providers must build directly into their programs, in addition to
training, continuing education on AIDS, infectious disease
control and other precautions. Los Angeles, San Francisco, Miami
New York, Dallas and other public hospitals have such programs in
place. . Such models should also include psychological
consultation, group sessions for staff to air concerns and staff
rotation. Hospitals dependent on medical schools should devise
programs that allow medical school residents training in non AIDS
care as well as AIDS treatment.

Provider and Community Organization of AIDS/ARC Care

Communities and providers must realize that effective execution
of the AIDS/ARC continuum of care will call for creating and
fully integrating groups to advise and review their response to

the AIDS epidemic in their localities.

1. Community-based responsibilities.

 

Communities should conduct city or county-wide planning and
review of AIDS. services. Initially, they should cooperate in
identifying resources and resource needs. Through task forces
and advisory groups composed of provider, business, and other
public and private sector representatives, communities must also

work to spread the responsibility for AIDS/ARC care among public

18

 

 
 

 

¥
’ * ’
' ‘ ‘ j
Kr ‘47 &

and private providers. Communities with large numbers of
indigent or other low income AIDS/ARC patients must consider and
monitor more closely providers' financial needs. Cities such as
Dallas, Texas have established a city-wide AIDS Planning

Commission to address many of these issues.

2. Provider responsibilities.

Health care organizations must also plan for and implement task
forces and advisory groups that consider provider-specific,
inter-provider or system-wide AIDS issues. Examples of key
provider-related groups include AIDS task forces, composed of
physicians, nurses, mental health professionals, case managers
and support staff, to review hospital-wide issues; clinical AIDS
committees to address service specific concerns; and strategic
planning and resource groups to consider long-term and continuum
of care issues. New York, San Francisco General and Parkland
Public Hospitals, for example, have fully integrated these review

and advisory groups into their AIDS/ARC treatment approach.

It is impossible at this time to give reasonable estimates on the
costs of these AIDS health care systems. However, I would like
to identify for the Commission what I would consider fundamental
elements that should be a part of any comprehensive plan to

Support AIDS treatment.

19

 
 

 

1. While different funding mechanisms and initiatives may
support various parts of AIDS treatment, emphasis must remain on
developing a comprehensive system of case .managed care that

extends far beyond the walls of the hospital.

2. A public-private sector partnership approach to
delivering all necessary services to people with AIDS must be
encouraged and established. The care for these individuals, poor
and non poor alike, cannot be left to the vagaries of competition
in the health care environment. In this effort both insurers and

providers must be active participants.

3. Medicaid may play the critical role in financing AIDS
treatment and in influencing hospitals to care for low income
people with AIDS/ARC. However, such variations in eligibility
levels exist between states that the current Medicaid system has
led to gross and tragic inequities in coverage of low income
AIDS/ARC patients. Any attempt at the national level to provide
adequate financing for AIDS treatment must make a highest

priority the elimination of these inequities.

4. The federal government, in recognizing AIDS as a
national tragedy, must assume much more responsibility for
financing AIDS treatment and for encouraging innovative

approaches to caring for people with AIDS/ARC.

20

 

 
 

 

5. For a comprehensive system of AIDS care to be
successful, it must have active involvement and support from
community based organizations representing high risk groups in

the areas where they live.

In closing, I want to reemphasize the desperate plight faced by
growing number of the nation's urban public hospitals and other
safety net institutions. The historical pattern of these
institutions treating the low income and otherwise medically
disenfranchised has never been nore evident than with their care
for people with AIDS/ARC. The safety net hospitals are also most
likely, once again, to suffer the harshest consequences of this
situation, as evidenced by inadequate financing, inability to
attract and retain high. quality medical staff, and the sheer
inundation of AIDS/ARC patients. Continuation of the status quo,
with many of them already encountering monumental shortfalls in
resources related to increasing levels of indigent care, will
cripple these institutions, especially as this epidemic
escalates. Thus, the response must be a_ concerted effort from
all levels of government and the private sector, who must work to
assure that the responsibility for this care is borne by the

entire health care system.

I will be happy to answer any questions.

21

 

 
 

Denver General Hospital
. Bouton City Hospital
District of Columbia General Hospital

eris County Hospital District
| (Houston)

iy of Medicine and Dentistry
ew Jersey University Hospital

. adv Memorial Hospital (Atlanta)
Santa Clara Valley Medical Cen er
(San Jose}

The Los Angeles County Hospitals
Parkland Memomal Hospital (Dallas)
Truman Medica) Center (Kansas City)
San Franciaco General Hospital
Bellevue Hospital Center

Bronx Municipal Hospital

City Hospital eat Elmhurst
. New York City)

Coney Island Hospital
Harlem Hospital Center
Kings County Hospital Center

Lincoln Medical and Mental
Health Center

Metropolitan Hospital Center
North Central Bronx Hospital
Queens Hospital Center

Woodhull Medical and Mental Health
Center (New York City)

Caok Counts Hospital

Contra Costa County Health Services
Department

Brackenridge Hospital (Austin!

Wishard Memorial Hospital
Ondianapolis)

Chope Community Hospita) (San Mateo}

Alameda County Health Care Services
Agency {(Gakland)

Westchester County Medical Center
stthee County Medical Center

sau County Medical Center

Medical Center at Memphis

f Pacific Medical Center (Seattle)
versity of New Mexico Hospital

Harborview Medica! Center Univeraty
of Washington

Fresno Counly Valley Medical Center
R_£. Thomason General Hospital

Kern Medical Center (Bakersfield)
University of Cincinnati Hospital
University of Texas Medical Branch
Hurley Medical Center (Flint)

San Bernardino County Medical Center
San Joaquin Genera] Hospital (Stockton)

Ras erside General Hospital,
Universnv Medical Center

Spartanburg General Hospital
Charitv Hospital at New Orleans
Maricopa Medica! Center (Phoenx)
St Louis Regional Medica) Center

Memorial Medical Center
(Savannah, GA)

Amarilo Hospital District

Jackson Memorial Hospital (Miami)
Pontiac Genera} Hospital (Pontiac, MI)
St Paul-Ramsey Medical Center

E. A Conway Memonal Hospital
(Monroe, LA)

Earl K Long Memorial Hospital
(Baton Rouge)

Huev P Long Memomnal Hospital
(Pineville LA)

allie-Kemp Charity Hospital
(Independence, LA)

Moss Regional Hospital
(Lake Charles, LA}

University Medical Center
(Lafavette, LA}

hington St Tammany Chantv
\ Hospital (Bogalusa, LA}

‘,

~ Tampa Genera) Hospital
Ene County Medica! Center (Buffalo)
Prince George's Hospita) Center (MD)

-

 

NATIONAL ASSOCIATION OF PUBLIC HOSPITALS
1001 PENNSYLVANIA AVENUE, NORTHWEST w SUITE 635 WASHINGTON, DC 20004 mw (202) 347-1136

roe ye a

Dennis Andrulis
Vice President for Research and Policy
National Association of Public Hospitals

Testimony Before The President's Commission on the HIV
Epidemic

January 13, 1988

Mr. Chairman, members of the Commission, I would like
to spend my brief time presenting evidence strongly
Supporting Mr. Lory's assertion that the AIDS epidemic
has placed our nation's safety net institutions in a
perilous position -- one that requires near as well as
long term assistance. Our conclusions derive from our
detailed study of 465 major public and private teaching
institutions throughout the U.S., details of which have
been included with Mr Lory's testimony.

l. It is clear that urban public hospitals treat a
disproportionate share of AIDS patients. Sixty-
four of these institutions, or 1% of all acute
care hospitals nationwide, treated an estimated
17% of all AIDS patients during 1985. Included
within those treated are subpopulations such as IV
drug users, the homeless and the indigent who
suffer from more complex conditions or who
otherwise require special assistance.

2. The public teaching hospital revenues lost on
treating AIDS patients are much higher than
comparable private teaching hospitals. On average,
private hospitals lost about $.14 for every $1.00
they spent on care to AIDS patients, or about
$2900 per patient per year. However, public
hospitals’ average loss was almost 225% higher, or
$6400 per patient per year. These losses were also
greater than those incurred for other medical-
surgical patients they treated.

3. Public hospitals treat a very
privately insured AIDS patients. The proportion
of privately insured patients treated in public
hospitals has historically been much lower than
Medicaid and other low income patients. However,

small number of

 

 
 

private insurance covers only 7% of the AIDS patients
treated in these institutions, while approximately 12% of
the general patient population in public hospitals is
covered by private insurance. What patient population is
taking the place of the privately insured? Low income AIDS
patients. On average 25% of the AIDS patients treated in
public hospitals had no insurance, while 62% of the patients
were covered by Medicaid.

4. Medicaid plays a critical in financing AIDS patient care.
However, Medicaid eligibility inequities across states are
wreaking havoc on public hospitals. Hospitals in states
with restrictive Medicaid eligibility lost over $7400 per
patient per year while hospitals in states with more liberal
eligibility lost less than $4000 per patient per year.
Public hospitals in the restrictive states, where almost 50%
of their patients had no public or private insurance, were
especially hard hit, losing almost $12,000 per patient per
year. While revenues were 92% of costs in private
hospitals in these states, revenues equalled only 42% of
costs for public hospitals in restrictive Medicaid states.
In fact, evidence indicates that private hospitals
willingness to treat low income AIDS patients is
significantly influenced by the strength of the Medicaid
program. Where Medicaid eligibility these institutions
cared for a much higher number of these individuals than
their private counterparts in restrictive states. They also
incurred a higher per patient revenue loss as a result.

As Mr. Lory testified and as I believe this status report clearly
states, the situation has become intolerable, particularly as it
affects our institutions' financial and medical resources. He and
others on this panel have identified initiatives to improve the
plight of people with AIDS and the institutions that treat then.
In closing I would like to identify for the Commission what I
would consider fundamental elements that reinforce many of these
recommendations and that should be a part of any comprehensive
plan to support AIDS treatment.

 
 

1. While different funding mechanisms and initiatives may
Support various parts of AIDS treatment, emphasis must remain on
Geveloping a comprehensive system of case managed care that

extends far beyond the walls of the hospital.

26 A public-private sector partnership approach to
delivering all necessary services to people with AIDS must be
encouraged and established. The care for these individuals, poor
and non poor alike, cannot be left to the vagaries of competition
in the health care environment. In this effort both insurers and

providers must be active participants.

3. Medicaid may play the critical role in financing AIDS
treatment and in influencing hospitals to care for low income
people with AIDS/ARC. However, such variations in eligibility
levels exist between states that the current Medicaid system has
led to gross and tragic inequities in coverage of low income
AIDS/ARC patients. Any attempt at the national lével to provide
aGequate financing for AIDS treatment must make a highest

priority the elimination of these inequities.

4. The federal government, in recognizing AIDS as a
national tragedy, must assume much more responsibility for
financing AIDS treatment and for encouraging innovative

approaches to caring for people with AIDS/ARC.

 
 

 

5, For a comprehensive system of AIDS care to be
successful, it must have active involvement and support from
community based organizations representing high risk groups in

the areas where they live.

In closing, I want to reemphasize the desperate plight faced by
growing number of the nation's urban public hospitals and other
safety net institutions. The historical pattern of these
institutions treating the low income and otherwise medically
disenfranchised has never been more evident than with their care
for people with AIDS/ARC. The safety net hospitals are also most
likely, once again, to suffer the harshest consequences of this
situation, as evidenced by inadequate financing, inability to
attract and retain high quality medical staff, and the sheer
inundation of AIDS/ARC patients. Continuation of the status quo,
with many of them already encountering monumental shortfalls in
resources related to increasing levels of indigent care, will
cripple these institutions, especially as this epidemic
escalates. Thus, the response must be a concerted effort from
all levels of government and the private sector, who must work to
assure that the responsibility for this care is borne by the

entire health care system.

I will be happy to answer any questions.

 

 
 

 

Statement of
Susan H. Mather, M.D., M.P.H.
Chairman, AIDS Working Group
to the
Presidential Commission on the HIV Epidemic

Impact of the HIV Epidemic on the Veterans Administration
Department of Medicine and Surgery

January 13, 1988

The Veterans Administration Department of Medicine and Surgery operates 172
medical centers, 229 outpatient clinics, 117 nursing home care units and 16
domiciliaries to provide health care to eligible veterans. In FY 1986
1,461,523 veterans were treated as inpatients and there were 20,188,132
outpatient visits. The VA is the largest comprehensive health care system in
the U.S. Users are primarily those with injuries or illnesses related to
military service and other veterans who are unable to defray the cost of
medical care.

The Veterans Administration has been involved with AIDS since the beginning of
the epidemic as one of the first recognized cases of epidemic Kaposi's Sarcoma
was treated at the New York VA Medical Center (VAMC) in 1979 and reported in
the Morbidity and Mortality Weekly Report (MMWR) in 1981. Since then, the VA
has provided care to 3,212 in 125 VAMCs as of December 1, 1987. At the end of
September 1987, only 10 VAMCs had not provided care to any patients with AIDS
or ARC.

Several problems have been identified with the HIV epidemic within the VA
health care system. They are:

1. Instituting infection control] practices known as universal
precautions within medical centers in a timely and reasonable fashion which
will protect health care providers who are exposed to HIV in the course of
their duties.

2. Developing cost figures for the care of AIDS. patients and providing
reasonable resource allocation for medical centers seeing most of the cases.

3. Protecting patient confidentiality while expanding the HIV testing
program which will include the counseling necessary to halt the spread of
infection.

4. Meeting the need for competent, trained counselors.

5. Funding the costs of new therapies, particularly those intended for
outpatient use.

6. Developing "alternate living arrangements” for infected IV drug
abusers and the homeless.

 

 
 

 

Each of these problems will be discussed very briefly and some recommendations
made to address them.

1. The protective practices, known informally or in medical "shorthand"
as "Universal Precautions,® have been recommended since 1986. However, the
realization that AIDS can be transmitted in the health care setting has given
the implementation of universal precautions an urgency that transcends the
costs and inconvenience of gearing up.

To the costs of the protective equipment will be added the intangible costs of
employee inconvenience and even irritation as problems such as dermatitis from
gloves arise as well as the general slowing of the pace of procedures.
Education must be ongoing as employees wrestle with decisions pitting safety
against convenience.

RECOMMENDATION: Practical assistance in implementing universal precautions
should be provided by the federal government through National Institute of
Safety and Health (NIOSH), Office of Health and Human Services (HHS) and by
professional organizations in the form of training courses, curricula and
other printed materials.

2. Cost accounting in the VA is not done by individual patient but on a
per diem basis for the entire medical center. Medical Center budgets are
developed using a Diagnostic Related Group (DRG) based prospective payment
system. In other words, a medical center's DRG experience in 1987, determines
their budget in 1989. This creates two funding problems. One is the absence
of DRGs that encompass the complexity of AIDS-related illnesses (e.g., the
reimbursement of "pneumonia with respiratory failure in a patient under 70°,
does not cover either the diagnostic or therapeutic complexity of an HIV
positive individual who presents with Pneumocystis carinii pneumonia). The
other is the underfunding which is inevitable since most people believe that
the VA and other health care systems will see more patients in 1989, than were
seen in 1987. However, because of the current demographics of the disease,
50% of all VA AIDS patients are seen in eight VA medical centers which have
been receiving supplemental funding.

RECOMMENDATION: Since these problems are unique to the VA system, there is no
recommendation nationwide except for the need to develop DRGs that reflect the
complexity and costs to care for AIDS patients.

 

 
 

3. Confidentiality of patient information has a long and distinguished
tradition. However, patient information has usually involved diseases and not
asymptomatic infections. Never before have infections carried the stigma or
invoked the hysterical persecution that HIV has. Therefore, protecting
patient confidentiality has become a matter of grave significance even with
the recognition of some necessary disclosures such as to health care providers
and sexual contacts. In addition, there are many of us who feel
confidentiality should extend past death. Discrimination has extended to the
spouse and children of AIDS patients who have died.

RECOMMENDATION: There is a need for contact follow-up with protection of
patient confidentiality and antidiscrimination measures to protect infected
persons' access to education, work, and medical care.

4. The relative ease with which HIV testing can be done has not been
matched by training of counselors who have both knowledge of HIV infection and
the requisite skills to educate and support people who are contemplating the
test or facing the devastating sequelae that may accompany the infection.

This problem is not unique to the VA.

RECOMMENDATION: A high priority should be given to training competent
counselors for HIV testing programs.

5. The release of AZT has meant improved life for many people with
AIDS. However, funding AZT therapy has been a burden for most patients.
While acute inpatient care is generally available to any eligible veteran,
outpatient care is available within the resources of a given VA facility on a
priority basis. Veterans seeking treatment for a service-connected disability
have the highest priority. AZT is primarily an outpatient therapy. However,
the majority of veterans with AIDS are non-service connected (estimated 80%)
and local VA medical centers are already experiencing difficulty meeting the
need for AZT therapy. They are also seeing an increasing number of veterans
who are members of an HMO or have some form of health insurance but are being
referred to the VA simply to obtain A2T.

RECOMMENDATION: Adequate funding for AZT treatment and other new therapies
must receive a high priority nationally. {

6. The population at risk of infection because of IV drug abuse present
Many particularly difficult problems for the health care system. The problems
involved in making discharge arrangements from acute care facilities for these
patients who are frequently homeless are severe. These patients are often not
appropriate for placement in most existing shelters or even long term care
facilities.

RECOMMENDATION: "Alternate living arrangements" need to be developed for
certain groups of people with AIDS and AIDS Related Complex (ARC), most
notably the homeless and IV drug abusers.

 

 
a

 

SUMMARY

In summary, the Veterans Administration is unique in being the largest
comprehensive health care system in the U.S. providing the whole continuum of
medical, surgical and psychiatric care from acute to long term, inpatient and
outpatient and in its user population whose eligibility is based in some way
on their military service. We have not been immune from the impact of AIDS
and the HIV epidemic.

Recommendations which would have relevance to the American hospital system are
as follows:

1. Practical assistance in implementing "universal precautions" should be
provided by NIOSH, HHS and professional organizations in the form of training,
curricula, and printed educational materials. The cost of this will need to be
considered in the overall cost of health care in the country.

2. Diagnostic related groups (DRGs) need to be developed which reflect
the complexity of AIDS related conditions.

3. Mechanisms should be developed for contact follow-up with protection
of patient confidentiality and antidiscrimination measures to protect infected
persons' access to education, work, and medical care.

4. A high priority should be given to training counselors to meet the
psychosocial and educational needs of those infected with HIV or at risk of
being infected.

5. Funding for AZT and other new therapies must receive adequate funding ,
nationally.

6. New "alternate living arrangements” need to be established for
patients with AIDS or ARC who are difficult to place following hospital
discharge because they .are homeless or IV drug abusers.

~

~N

 

 

 
 

 

STATEMENT
SAMUEL C. MATHENY, M.D., M.P.A.
DIRECTOR
OFFICE OF SPECIAL PROJECTS
BUREAU OF MATERNAL AND CHILD HEALTH AND RESOURCES DEVELOPMENT
U.S. PUBLIC HEALTH SERVICE
DEPARTMENT OF HEALTH AND HUMAN SERVICES

Thank you for this opportunity to present information and recommendations to

the Commission on training and education of health professionals in the

prevention and treatment of Human Immunodeficiency Virus (HIV) infection.

I am Sam Matheny, Director of the Office of Special Projects in the Bureau of
Maternal and Child Health and Resources Development. This Bureau is located
organizationally in the Health Resources and Services Administration (HRSA),
one of the agencies of the U.S. Public Health Service. My Office is
responsible for carrying out the primary AIDS initiatives of HRSA, and I also
function as the HRSA AIDS Coordinator. Yesterday, Dr. Sundwall, the HRSA
Administrator, discussed those AIDS initiatives before this Commission, and he

indicated that I would testify on the AIDS Education and Training Centers

~

-

(ETCs).

Before I explain the details of these grant-assisted ETCs, let me discuss
briefly the trends in the AIDS epidemic which have given rise to the need for

these centers.

Initially, AIDS patients were concentrated primarily in several large
metropolitan areas. In general, they were attended by medical specialists,
and care was provided in hospitals. Physicians who provided care to AIDS
patients came to oe seen as specialists in the disease and consequently
became, by fiat, tne providers of care for most new patients. Today we
continue to observe that in high AIDS prevalence areas relatively few

pnysicians are caring for the majority of AIDS patients.

 

 
 

 

The problem we face is that as the numbers of patients requiring services
expands, additional providers who have received AIDS training will be required

to respond to the need.

In cities where the incidence of AIDS has been highest, community leaders and
health personnel have had to augment existing social and medical care
resources outside of hospital settings in order to meet the multiple needs of
AIDS patients. But again, the number of health personnel who are staffing

these non-acute care resources is limited.

There is another development in the spread of AIDS -- this one both a
demographic and a geographic change. AIDS is spreading. Populations other
than IV drug abusers and homosexual males are increasingly at risk. Hand in
hand with this shift is the spread beyond metropolitan areas to suburban and
even rural locales. AIDS has now been reported in every one of the 50
States. Thus, in terms of high incidence areas and geographic changes, it is
critical that a larger cadre of health personnel receive training, including
primary physicians, nurses, dentists, and others, to provide the spectrum of
prevention and services required. To accomodate this need for training both
the public and private sectors must foster the development of enhanced
training and education programs for health personnel in all areas of the

nation.

Many schools of medicine and allied health have incorporated AIDS education
into their curricula. But the large cadre of already practicing health
professionals require specific training to enable them to provide appropriate
services to their HIV-infected clientele. The provider community will requir
information and referral resources as well as the tools to use in preventic

counseling and health education in their communities.

 

 
 

 

To meet these critical needs, $1.9 million was made available in 1987 to fund

four regional AIDS Education and Training Centers (ETCs). In 1988,
approximately $6 million in additional funds will be awarded to support the
formation of at least 6 more ETCs. Grants are awarded to institutions or
consortia of institutions which demonstrate an ability to conduct high-quality
training programs that would involve .a large number of health care

professionals.

The purpose of EICs - stated in the most simple terms - is to provide
training to primary health care personnel in the prevention of HIV
transmission and in the care of people with AIDS and other HIV-related

conditions. The objectives of these coordinated, regional centers are:

1. To prepare community-based primary health care personnel to counsel,
diagnose, and manage patients and families. We are expecting each ETC to
provide such training to several thousand health personnel annually.
Training will focus on skills, knowledge, and attitudes required to
provide appropriate services for people with AIDS. Training will also
prepare health personnel to serve as community health educators, advising

and counseling on steps necessary to stop the transmission of HIV.

2. To serve as a source of up-to-date information and support for health
personnel on clinical information and patient services. We expect such
services to be available for all health care providers in the ETC service
area. The latest clinical or research information will be provided and
may even extend to providing speakers for community hospital grand
rounds. ETCs could also help providers develop patient education

; a
resources, such aS prevention pamphlets. In addition, we expect ETCs to

 
 

 

be an immediate source of help for questions on treatment protocols or
particular patient- related problems. ETCs will provide a referral source
for either specialist treatment or to meet a psychosocial need. Through
such services, we aim for a system in which the educated primary care
provider can work in tandem with consultants from the whole spectrum of

health and social services.

To stimulate a multi-disciplinary approach to treatment of HIV-infected
patients. ETCs will provide education, training, information, and
referral services to all health professionals, including but not limited
to physicians, dentists, nurses, physician assistants, nurse
practitioners, social workers, counselors, and psychologists. Through
both education and the network of referrals, we will emulate models,
already developed to a limited degree in some communities, of a true

multi-discipline, multi-resource system of care.

To Emphasize non-acute-care settings in both prevention and treatment.
Literature and experience demonstrate that appropriate ambulatory care is
cost-efficient and beneficial. It allows patients to continue a home life
among friends and family and allows better allocation of more expensive
acute-care resources. Specific to AIDS, as more therapeutic options
become available, fewer patients will require lengthy hospital stays and
ambulatory or outpatient treatment will be the favored option. What is
critical, of course, is that non-acute-care resources be available, with
appropriate staffs and systems of referral for all parts of this support

system.

 

 
 

 

5. To enhance provider sensitivity through education

Providers will receive training in how to take appropriate sex and
drug-use patient histories and to counsel patients effectively on the

associated risk behaviors.

This brings me to the recommendations for health professions education and

training.

RECOMMENDATION #1: CONTINUE SUPPORT FOR REGIONAL CENTERS FOR TRAINING AND

EDUCATION.

Such support may come from all levels, private and public. We need to look to
the future and realize that such centers can improve our treatment of AIDS
patients today, and can be used as models to achieve system integration in all

areas of health care for the future. That leads to the next recommendation.

RECOMMENDATION #2: ENCOURAGE HEALTH PROFESSIONALS TO INTEGRATE THE CARE OF

HIV-INFECTED PEOPLE INTO THE MAINSTREAM OF OUR HEALTH CARE SYSTEM.

It is our strong belief that to develop a separate system of care which is
disease specific is not desirable. To do so would ultimately defeat us both
in terms of budget and in terms of providing compassionate care to AIDS

—

patients.

RECOMENDATION #3: RECOGNIZE THAT HIV-INFECTED PATIENTS NEED NON-ACUTE
(NON-HOSPITAL) CARE AND TAKE STEPS TO ASSURE THAT HEALTH PROVIDER TRAINING AND

EDUCATION ARE APPROPRIATE TO THOSE NEEDS

 

 
 

 

As I have indicted, there is a rapidly growing need for such services as
ambulatory care, home care, and long-term care. This emerging need requires
thoughtful examination, planning, and implementation so that resources
required for these purposes can be integrated appropriately into present and

future plans,
RECOMMENDATION #4: IMPROVE COUNSELING COMPETENCIES OF PRIMARY CARE PROVIDERS

From a prevention perspective, primary care providers are an essential link in
identifying patients at risk of HIV infection so that those individuals can be
counselled appropriately on ways of decreasing the possibility of spread of
the infection. Increasingly, primary care providers are also called upon to
counsel and advise those individuals who fear AIDS, but are seemingly not at
risk, and to conduct health education sessions for schools or other local
organizations on the epidemic in general. To meet such emotionally and
medically challenging demands successfully, the primary care providers must
first be "approachable" by those at-risk populations who traditionally may
have been shunned by society. Educating the primary care provider to be
“sensitive" to these populations would not be aimed at changing their moral or
ethical opinions. Rather, the education process would acquaint them with
particulars of different life styles so that they could advise on changes in
behavior to prevent transmission of the HIV. It would provide in-depth
education on counselling skills such as those related to explaining HIV
testing, and to explaining options, resources, and realities to those who test
positive and their families. These skills could extend as well to
counselling and advising others who could provide very specialized service
such as death counselling. The efforts of both the public and private sectors

are needed to implement this recommendation.

This concludes my testimony. I will respond to your questions.

 

 
 

 

TESTIMONY OF

ERIC M. FINE, M.D., MPH

BEFORE THE

PRESIDENTIAL COMMISSION ON THE HUMAN
IMMUNODEF [CIENCY VIRUS EPIDEMIC

JANUARY 15, 1988

{

 

 
 

 

Mr. Chairman, Members of the Commission:

I am Dr. Eric Fine, Assistant Director for Health
Services of the Maryland AIDS Administration. I thank you
for this opportunity to appear before you to address the
1ssue of health care provider education. As a
board-certified pediatrician and state public health
administrator in the field of AIDS prevention and control, I
am acutely aware of the urgent need by all categories of
heaith professionals for accurate, timely, and relevant
educatian about HiV and its related disorders. THis
morning. I hope to ainfo-m you about current and planned
efforts in Marylana ta achieve health provider ecucation, ts
describe an innovative educational project we have initiated
with state funds, and to offer recommendations for your
consideration.

Maryland 15 a typical state with respect to reported
eccurrence of CDC-defined AIDS. Only AIDS 186 repartatie
under Maryland law. Our cumulative total of 923 reported
cases through 1987 represents 1.8% af the national total and
roughly parallels the U.S. percentage distribution among
defined transmission groups. (See attached Maryland AIDS
Update). We differ remarkably from national figures in two
respects, with S1% of our cases occurring among black
individuals, and a so-far unexplained short median AIDS
Survival time of only 14 weeks. A total of 55 Maryland = and
vicinity acute general hospitals have served and reported

AIDS cases to the state health department. Only le

\

f

 

 

 
 

 

hospitals (27%) in Maryland have reported more than 15 cases
of AIDS. Only 6 hospitals (2 1n Washington suburbs and 4 in
Baltimore) have served more than @5 patients. Levels of
experience in treating AIDS, therefore, vary significantly.
In October, a telephone survey by the state health
department of 53 Maryland acute general hospitals revealed a
one-day census of 62 AIDS or HIV positive patients in these

hospitals throughout the state. There have been no reported

proclems admitting HIV Positive patients to Maryiand
hospitals, but the need for system-wice education 1S
COvicus.

imn the area cf pnysician care, Marylarc nes 2D ,UsU

licensed physicians of whom 10,000 practice within the
state. From 1981 through 1987, only 533 (5%) Maryland
physicians have reported any AIDS cases. In Baltimore City,
the sgrea of highest prevaience, anly 7 (3.6%) pnysicians of
194 reported more than S AIDS cases. Here, again, the
indirect evidence of physician involvement in management of
HIV infection, as reflected by case reporting, suggests
minimal patient experience among the large majority of
Maryland physicians.

Maryland operates 26 counselling and testing sites
with all but three under local health department auspices.
Testing is free, and half the sites offer anonymous testing.
Approximately 680 confirmed HIV seropositive persons were
served during eleven months of 1987. Clearly, local health

department nurses and counsellors require ongoing education

 

 
 

 

to properly serve the more than 14,000 persons who sought
testing this past year.

Given these aspects of the Maryland AIDS picture, and
the’ fact that more than 75,000 licensed physicians, nurses,
gentists, hygienists, Sanitarians, physician assistants, and
morticians may be called upon to care for an HIV infectec

person, what actions has Maryland taken to assure that its

health providers are educatec” Education, of ceurse. must
be an active process between teacher anc student. rnvalving
net oniy transfer of information, but achievement of

definite behavioral gdjyectives by the health care provider.

5

These objectives inc.ucce application af knowlecge and skills

to the health care setting which can be objyectively
measured. At the University of Maryland Schools of
Medicine. Nursing, Pharmacy, Social Work, Law, and

Dentistry, acpropriate HIV content curricular additions are
being incorporated into the pre-degree courses. Management
of HIV disorders. 15 included in the clinical and residency
years at the School of Medicine. Continuing education
courses about various aspects of HIV disorders have been
offered at both University of Maryland and Johns’ Hoptins
University.

Consistent with these efforts at the University of
Maryland, the University of Maryland at Baltimore
Chancellor's office applied unsuccessfully for one of the
first four AIDS Education and Training Center grants

sponsored by U.S. Public Health Service's Health Resources

 

 
 

 

and Services Administration. A re-application 15s being
finalized now to establish a southeast Atlantic regional
training center. Certainly, our training efforts through
the state AIDS Administration would be greatly enhanced by
successful establishment of such a center with which we
could and would collaborate. On the subject of federal
assistance, the extraordinary technical and financial
support provided by the Centers for Disease Control through
the Counselling/Testing and Health Education for Pisk
Reduction grants has enatled Maryland to undertake
significant seroprevalence studies and Eapand local health
department counselling and testing resources at a critical

time of increased public awareness and demand for’ services.

Such sites provide practical training experiences for
nurses, physicians, and counsellors desiring to learn
first-hand the skills of history-taking. psychosocial

interviewing, and encouraging partner notification.

The state medical society has been quite active in
establishing an AIDS speakers bureau fer local medica)
societies, in featuring HIV topics at the society's annual
meetings, in conducting local hospital grand rounds, and in
devoting a complete issue of the Maryland Medical Journal
(copies have been distributed today) to HIV and sexually
transmitted diseases. The American Medical Association has
reprinted this edition for use in multi-state regional AIDS

seminars for physicians. The Maryland medical saciety

 

 
 

hosted such a meeting for five states involving 87

\

|
A recent example of multi-agency collaboration 1s the

-

‘printing and mailing by Maryland Blue Cross ta 75,000

physicians.

licensed health professionals of the CDC "Recommendations
for Prevention of HIV Transmission in Health Care Settings"
(MMWR, 36:25, August 21, 1987). This exciting demonstration
of a public/private partnership should be replicated. It
benefits all participants through increased awareness of
universal infection control precautions, through timely
upcating of health care workers, and through direct contact
with a potential! population of future trainers for the
health care setting.

Finally, an innovative approach to provider education
kas been recently initiated with state funding. The
establishment of pediatric and adult HIV diagnostic
evaluation units (DEU's) at University of Maryland and Jonns
Hopkins Schools of Medicine, respectively, will achieve
several goals: (1) standardize multi-disciplinary
evaluation of ARC and AIDS patients; (2) develop individual
care plans for each patient, with lassignment of a case
manager in the local health department to assist in
implementing that plan in the patient's home community; (3)
collect data on patient care needs necessary for planning of
appropriate care resources; and (4) educate local providers

who refer patients for evaluation.

 

 
 

The DEU's will provide several types of provider
education. first, the written plan of care to be developed
for each patient will direct the local provider about how an
individual patient should be managed. Second, the
specialists at the DEU will be available for consultation on
patient management issues which arise after an evaluation
and will perform re-evaluation of a patient and revision of
the care plan as necessary. Perhaps most relevant to the
regional education and training center concept would be the
opportunity to use the DEU for hands-on training in. patient
care. A short-term (e.g., one week) fellowship would give
professionals the opportunity to be part of the patient care
evaluation/management team, making rounds and attending case
conferences. The DEU's might also provide off-site training
rm use of patient evaluation protocols or other techniques
developed in the DEU setting. All of these educational
experiences share the common goal of enhancing provider
competence to handle day-to-day care of patients with HIV
disease.

Success of this demonstration for provider education
will be evaluated during the coming year. Medicaid
reimbursement regulations for case management and care
planning have already been drafted to complement this
initiative.

My recommendations to you in the area of health

provider education include both general and specific

considerations:

~~

 
 

 

l. Maryland supports the Health Resources and
Services Administration Education and Training Centers
Program (ETC) and urges that annual awards be increased to
$1 million each with sufficient appropriation to double the
number of grantees now and extend training for five years,
not three.

ESTIMATED COST: $20 MILLION/YR

e. ETC grantees should be encouraged to develop and
disseminate standard protocols for primary care med:cal
management and follow-up of minimally symptomatic Hiv

seropositives; this would permit primary care practiticrers
to assume major care responsibilities with confidence,
coneulting only when necessary with infectious disease
specialists who now attempt to provide total care for which
they are neither experienced nor trained.

3. Ecgucation curriculum must emphasize and
demonstrate a comprehensive, multi-disciplinary approach to
HIV patient management with student opportunities to
experience collaboration among health care providers in care
planning, assessment, and follow-up. The ramifications of
HIV infection on the family and individual necessitate a
team approach with capability for reassessment,
consultation, and referral. Providers learn these skills
through first-hand participation.

4. Tne President and Congress must recognize that
academic institutions, which are caring for the majority of

HIV affected patients today, are capable of providing

 

 
 

faculty to educate health professionals only because of

grant support for basic and applied research in the health
sciences. Federal support for research 15 an inseparable
and indispensable part of our ability to expand provider

|
education.

 

5. The Maryland medical society reminds us that
\

¥

Primary care physician education, in Particular, needs to be
locally based and preferably conducted bv trained colleagues
in smali',groups or at community hospitals. There 15
considerable need to address concerns and misconceptions
about patient lifestyles, needs, and abilities to comply
with prescribed treatment.

6. Provider leducation programs must recognize and

address frequent barriers to learner participation which

include insufficient release! time, lack of back-up coverage

during training, or requirement for salary or stipend.
'

During training, these ‘fundamental costs should be

acceptable for grant support under federal Guidelines, and

sufficient funds should be appropriated to enable grants to
cover these costs.

7. The Commission should take particular note of
factors and conditions which motivate health care providers
to seek training about primary care of HIV disorders., These
include safety concerns (already highlighted by Occupational
Safety and Health Administration), desire for continuing
C@ducation credit, desire to improve skills, altruism,

income, recertification and others which should be

 
 

identified to promote maximum effectiveness of training
programs.

8. Finally, the Commission should strongly endorse
and urge rapid transition to a formula grant approach to
support HIV health services and provider education. This
approach would authorize a pro-rata appropriatian by state
based upon relative impact of the HIV epidemic and require
minimum specified basic services as documented ina state
plan. Such an approach would permit state-level flexibility
in services and education, assure federal accountability and
avoid wastetul competitive applications in the face of a
national crisis. The health services and primary care
educational needs of the HIV epidemic transcend our old
approaches to demonstration grants and compel us to
recognize the national scope of this crisis. Every state
must be enlisted now and held accountable if we are to stop
this epidemic.

I thank you for your attention.

 

 
 

RESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
655 15th Street NW, Suite 901, Washington, D.C. 20005 (202) 245-2437

r

CHAIRMAN CARE HEARINGS Recommendations
Admural James D. Watkins (Ret.}

JANUARY ]3-]5 Page ] of 2

 

RECOMMENDATIONS

 

Maryland supports the Health Resources and Services Administration Education and
Training Centers Program (ETC) and urges that annual awards be increased to

$1 Million each with sufficient appropriation to double the number of grantees
now and extend training for five years, not three.

Cost: $20 Million per year Based upon: 20 ETC grantee at $1 Million/Yr.each
RECOMMENDATIONS

 

The Commission should strongly endorse a formula grant approach to support HIV health
services and provider education. This would authorize a pro-rata appropriation

for each state based upon relative impact of the HIV epidemic and require minimum
specified basic services as documented in a state plan. Such an approach would
permit state-level flexibility in services and education, assure federal accounta-
bility and avoid wasteful competitive grant applications.

 

 

 

 

 

 

Cost: $750 Million per year Based upon: Estimated costs in Maryland
RECOMMENDATIONS
Eric M. Fine, M.D., MPH SyGirxh
Name Signature
AIDS Administration
201 West Preston Street, Room 321° /-/4-4¢9
Address Date
Baltimore, Maryland 21201 (301) 225-6804

 

 

City State Zip Area Code and Telephone

 
RESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
655 15th Street NW, Suite 901, Washington, D.C. 20005 (202) 245-2437

CHAIRMAN CARE HEARINGS Recommendations
Admiral James D. Watkins (Ret.)

JANUARY ]3-]5 Page 2 of 2

 

 

 

 

 

 

 

 

 

 

 

RECOMMENDATIONS

Education curriculum must emphasize and demonstrate a comprehensive, multi-
disciplinary approach to HIV patient management with student opportunities to
experience collaboration among health care providers in care planning, assessment,
and follow-up. The ramifications of HIV infection on the family and individual
necessitate a team approach with capability for reassessment, consultation, and
referral.

Cost: $§$ N/A Based upon: N/A

RECOMMENDATIONS

Cost: $ ~— Based upon:

RECOMMENDATIONS

Eric M. Fine, M.D., MPH JS Wan “S

Name Signature

AIDS Administration

201 West Preston Street, Room 321 . /-14-§&

Address Date

Baltimore, Maryland 21201 (301) 225-6804 -

City State 21p Area Code and Telephone

 

 

wv"

 
 

MARYLAND AIDS UPDATE

DECEMBER 31, 1987

AIDS Administration

Marvland DHMH 20! W Preston Baltimore MD 21201

A!IDS Information and Referral Hotline

14ARYLAND AIDS STATISTICAL UPDATE

(301) 225-6707

1-800-638-6252

SINCE JANI, 1987
Cases Percent

CUMULATIVE
Cases Derce

 

 

 

 

 

 

 

 

 

. Cases by place of residence and vital status
SINCE JANI, 1987 CUMULATIVE
Living Deceased Living Deceased | !!. SEX
Cases Cases Total Cases Cases Jota Male 326
Female 39
Total 365
laltumore City 93 46 139 144 204 348
wuburban Baltimore
zounties 1. RACE
\nne Arundel 9 2 11 18 21 39 White 171
faltimore 14 6 20 17 36 53 Black 187
wet Hispanic 7
dasford Other 0
loward wzwmenne 1 2 18 20 aeewew 1 6. 36_ Total 365
ietro Baltimore 123 58 186 199 277 476
iubtot-" IV AGE
jubur counties 0-12 8
dor? wary 44 20 64 61 50 151 13-19 3
rr eorge's 53 31 84 83 135 218 O39 88
- 0- 151
alven 40-49 73
*rederick 4 4 8 9 13 22 _7 Total 365
it Mary XJ nnn nnn rrr errr nen n nn por nnn renner nnn ccna a
4etro DC (MD) 101 55 156 153 239 391" V. DISEASE
subtotal: AT DIAGNOSIS
eastern snare 9 5 14 11 26 __ 37, randtdiasis 42
wee ee ee ee eee prs ercesceresces plococcosis 29
Western MD 2 7 9 4 15 19 JKapos: s Sarcoma 11
. aue 18
carininpneumonial65
MD total: = 240 125365 367 556 923. pot KS and Pcp *
Dther Opportunistic
Inf 96
Cases Deaths naa
al 365
Washington, D C. 993 581
Virginia suburbs 287 142
Marylae4 suburbs 391 238
Met .C. total: 1671 961
N: snail: 1981-1982
(Cue data as of 49,743 27,909 1983
December 28, 198) 1984
—_—_— eee 1985
1986
{987

 

 

wy bol

 

89.3 830 89.9
10.7 | _93 10.1
100.0 | 923 100.0
46.9 422 45.7
51.2 471 51.0
1.9 28 3.1
0.0 2 0.2
100.0 923 100.0
2.2 20 2.2
0.8 5 0.5
24.1 189 10.5
41.4 391 42.4
20.0 , 191 20.7
11.5; 127 13.7
100.0 | 923 100.0
11.5 | 127 13.8
8.0 |; 80 8.7
3.0 , 52 5.6
4.9 | 87 9.4
45.2 | 389 42.1
1.1 | 20 2.2
26.3 168 18.2
100.0 923 100.¢

CASES
i0

33
82
184
249

VI. YEAR OF DIAGNOSIS

Number of cases
diagnosed in year
now known to be
DECEASED (%)
10 (100%)
30 (90.9%)
78 (95.1%)
153 (83.1%)
160 (64.3%)

36512534. 27)

923

556 (60.2%)

 
 

 

MARYLAND AIDS UPDATE

 

_ VILTRANSMISSION CATEGORY

 

 

 

 

‘SINCE JAN 1, 1987 CUMULATIVE , *
Adult Male Female Total Percent le Female Total Percent \

, Homosexual 170: - 170 46.8 434 ~ 434 47.0 \
Bisexual 55 7 55 15.0 142 - 142 15.4 ’
Homo/Bt IV ‘\
Drug Abuser , |S 7 15 4.1 40 - 40 4.3
IV Drug Abuser 42 20 62 17.0 99 38 #137 «14.8
Sees 4 9 13 3.5 8 26 343.7
emophiliac 2 0 2 0.5
Born in NIR 8 ° 8 0-9
Country 3 0 3 0.8 12 3 15 1.6
Transfusion Recipient 14 6 20 5.5 40 14 54 5.9
Undetermined 16 1 17 4h 3 6 349 4.2
Adult Subtotal: 321 36 357 87.8 816 87 903 97.9
Pediatric
Mother VDA 5 2 7 1.9 10 3 13 1.4
Mother sexual contact

of VDA oO 1 1 0.3 1 2 3 0.3

of bisexual Oo 0 0 0.0 Oo 0 0 0.0

Transfusion Recipient 0 0 0 0.0 3 1 4&4 0.4

Undetermined 0 0 0 0.0 0 0 oO 0.0

Ped. Subtotal: 5 5 8 2.2 14 6 20 2.1

Total: 326 39 365 100.0 830 93. 923 100.0
Fox. R.. N.J. Odaka, R. Brookmever, B.F. Polk. Effect

IN REVIEW

of HIV antibody disclosure on subsequent sexual
activity in homosexual men. AIDS 1987 1:241-246.

In this aspect. of the Johns Honkins SHARE study. 1001 homosexual or
bisexual participants were offered the knowledae of their antibody status. Of
the 1001, 670 participants who chose to be aware of their antibody status were
compared with 331 who did not want to be aware of their antibody status for
selected measures of self-reported sexual activity. Measures cf sexual
activity were number of male partners with whom the participant had sexual
intercourse in the previous six months. the number of male partners with whom
the participant had unprotected anal receptive intercourse in the past six
months, and the number of male partners with whom the participant had
unprotected anal insertive intercourse in the past six months. Change in
sexual behavior was measured over four visits in two years; three visits took
place before the antibody status was disclosed, and one followed disclosure.

Overall, these measures of sexual activity showed a decrease over the
s r period. Aware seropositives and unaware persons showed Similar decreases
i ae overall number of partners;aware seronegatives showed less of a decrease.

For unprotected anal insertive and receptive measures, aware seronegatives
showed significantly less decline in the number of partners than either awa~
seropositives or unaware persons. As the authors stated,"that aware seroneg
people did not virtually eliminate the practice of unprotected anal receptive
intercourse is disappointing." Aware seropositives also reported unprotected
anal insertive and receptive activity. The results of this study point to the
next needed step in AIDS education and prevention: motivation techniques
resulting in long term behavioral change. This study indicates that educating at
viek naranne ahant ATNS jan't enouah: hehavioral motivations are needed.

Ve

 

 
 

 

 

MARYLAND AIDS UPDATE. p3

 

1 BRIEF:

IAK. AND COUNSELING AND TESTING SITE SEROPREVELANCE RATES
lay 1985-September 1987

May-December 1985!Jan-December 1986iJan-Sept 1987 | Fotal
| | |
Tested Pos (%) |\Tested Pos (%) {Tested Pos (%) {Tested Pos (%)
thite: Male 953 BA (9.2%) | 1419 126 (8.9%)1 3514 110 (3.1%)! 5886 324 (5.5%)
Female 234 2 (0.9%) {| 499 7 (1.4%) 1 2957 13 (0.4%)! 3690 22 (0.6%)
Sex unk 4 0 (0.0%) | 5 1(20.0%) | 31 1 (3.2%) | 40 2 (5.0%)
fotal 1191 90 (7.6%) | 1923 134 (7.0%)! 6502 124 (1.9%)! 9616 348 (3.6%)
{ | |
lack: Male 337 102(30.0%) | 473 140(29.6%)! 1025 134(13.1%)1 1835 376(20.5%)
Female 78 10(15.4%) | 164 12. (7.3%)! 842 34 (4.0%)1 1084 56 (5.2%)
Sex unk 1 0 (0.0%) | 2 0 (0.0%) | 5 0 (0.0%) | 8 0 (0.0%)
Total 416 112(26.9%) | 639 152(23.8%)! 1872 168 (9.0%)1 2927 432(14.8%)
|
|
|
|
}
|
;

| |

ther: Male 28 1 (3.6%) 44 6(13.6%)1 123 7 (5.7%)) 195 14 (7.2%:
Female 9 2(22,23%) 15 0 (0.0%)! 192 0 (0.0%)! 216 2 (0.9%)
Sex unk 8 3 (37.5%) 12 1 (8.3%) | 20 0 (0.0%) 1 40 4(10.0%)
Total 45 6 (13.3%) 71 7 (9.9%) 1 335 7 (2.1%)( 451 20 (4.4%)

otal: Male 1318 191/14. 5%)
Female 321 14 (4.4%) 678 19 (2.8%)! 3991 47 (1.2%)

|
1936 272(14.0%)1 4662 251 (5.4%)1} 7916 714 (9.0%)
.
3ex unk 13 3(23.1%) | 19 2(10.5%) | 56 1 (1.8%) | 88 6 (6.8%)

ee ee oe oe ee ee ee et es we

Overall: 12,994 800 (6.2%)

EROPREVELANCE RATES FOR MARYLAND MILITARY RECRUIT APPLICANTS
etober 1985-September 1987

Baltimore Baltimore Montgomery Prince George's
City . SMSA County County
Tested Pos(%) {| Tested Pos (%) [Tested Pos (%) ‘Tested Pos (%)
6762 49 (0.72%)! 11648 51 (0.44%)! 2199 13 (0.59%)| 7139 39 (0.55%)
| |

otal

|
| I
ale 1 §576 45 (0.81%)] 9791 46 (0.47%)! 1898 (0.65%) | 5785 34 (0.59%)
_2male | 1186 4 (0.34%){ 1857 5 (0.27%): 301 (0.33%) 1 1354 5 (0.37%)
|
|
|

he
me Ww

| | |

ite 2700 5 (0.13%)! 6566 5 (0.08%) + 1466 6 (0.41%)}| 1860 2 (0.11%)
Lack 3951 44 (1.12%)1 4858 45 (0.93%); 554 7 (1.30%)! 5037 37 (0.73%)
111 0 (0.0%) | 224 1 (0.4%) [| 179 0 (0.0%) | 242 0 (0.0%)

, cher

Data comes from the Department of Defense via the CDC. All positives are
estern Blot confirmed. There were no seropositive persons from western Maryland
- tk “astern Shore.

nue overall seropositivity rate for the nation's 1,254,068 military recruit
> cants tested since October 1985 is 0.15%. For white military recruits the
sropositivity rate is 0.08%; for blacks the rate is 0.39%; for other ethnic
-oups the rate is 0.21%. The national seropositivity rate for male military
xcruit applicants is 0.16%; for female recruit applicants the rate is 0.07%.

 

 
 

 

UPCOMING EVENTS This space is reserved for listing upcoming

AlDS-related events, lectures, or seminars in Maryland. For inclusion, call‘
(301)-225-6707

a

~

JANUARY 15-17,1988 -~-Conference on AIDS Ministry. Houston, Texas.
For more information call 1-800-642-4386.

WEDNESDAY, JANUARY 20,1988--8:00 am- 5:30 pm. Conference to develop. a> “ —_
Five-Year Plan to meet the AIDS Challenge in
Montgomery County. Gaithersburg Marriott Hotel,
Gaithersburda, MD. For further information call
(301) 997-8900,

MARCH 8-10, 1988 _wcFirst International Conference on the Global \
” Impact of AIDS. London, England. For more
information write: Conference on the Global Impact
on AIDS, Emap Maclaren Exhibitions Ltd, PO Box 138
Token House, 79-81 Hiah St, Croydon CRY 3SS,

England.

MARCH 28-29, 1988 --Conference: AIDS. Alcohol and Drugs: Issues and
Options. Baltimore, MD. For more information
contact: Ludwidq L. Lankford, Dir., Institute of

Alcoholisr and Drua Abuse Studies, 201 W. Preston
Street, Baltimore. Maryland 21201 Telephone (301)
225-6933.

AIDS Administration

Maryland DHMH

201 W Preston

Baltimore, MD 2120! .

€
ee -

 

 
 

 

TESTIMONY BEFORE THE

PRESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

BY

MARILYN P. CHOW, DNS, RN, FAAN

DIRECTOR OF NURSING PRACTICE

ACTING PROJECT DIRECTOR, CNA AIDS EDUCATION AND TRAINING

CALIFORNIA NURSES ASSOCIATION

JANUARY 15, 1988

INTERSTATE COMMERCE COMMISSION BUILDING

HEARING ROOM B

 

 
 

 

Good morning. Thank you for inviting the California Nurses Association
to present testimony on it's AIDS Health Provider Education and
Training Project, otherwise known as the CNA AIDS "Train the Trainer"
program. My name is Marilyn Chow and I am the Director for Nursing
Practice for the California Nurses Association and the Acting Project
Director for the CNA AIDS Education and Training project while Helen
Schietinger is consulting with WHO on developing a nursing curriculum

on AIDS.

Education is our most potent weapon against the spread of HIV
infection. The CNA "Train the Trainer" program seeks to assure
improvement in the level and quality of health care for people with HIV
infection through the training of key influential health care workers

who will then serve as trainers for their co-workers and others.

Between June 15, 1986 and June 30, 1988 thé CNA AIDS Education and
Training project will have educated 1359 health provider trainers in
California who in turn will have educated approximately 33,000 health
care workers in their work setting. The trainers have come fran
hospitals, hame health agencies, regional development centers, long
term care facilities, and health professional schools. In addition,
CNA's AIDS Education and Training will have provided ongoing technical
assistance to these trainers in the form of updates and a resource
newsletter. All this will be accamplished for a reasonable sum of

$600,000.

 

 
 

 

The highly successful AIDS Education and Training program has 4 primary
goals:

1. To increase health care providers’ knowledge about HIV

infection.

2. To allay unwarranted fears about AIDS which prevent health care
providers from providing adequate care to people with the HIV

infection.

3. To provide innovative teaching strategies to enable AIDS

educators to achieve the first two goals.

4. To decentralize AIDS expertise.

The unique aspect of CNA's " Train the Trainer" program, is that the
trainer remains in the work place providing ongoing access to AIDS

information to staff on an regular basis.

The creation of an optimum learning situation and utilization of
strategies which engage the learner are critical. Therefore, the
entire program is based on adult learning principles which takes into
consideration the climate in which learning takes place, amd the needs

and experience of the learners.

 

 
2.

 

 

The CNA AIDS Train the Trainer program has 3 camponents: 1)

Pre-training learning activities done at home by the trainer prior to
attending the training session; 2) attendance at a two-day training
session where trainers learn how to teach the content; and 3) teaching
the HIV instructional program to health care personnel in their work
setting.

1.

Pre-training learning activities which the Trainers mast
complete before attending the 2-day training session.
Activities include readings, researching the local demographics
of the institutional response to AIDS of their own health care
settings, and performing a self-assessment of the trainer's
knowledge about AIDS and HIV infection. This self-guided
learning process ensures that trainers in the 2 day session are
familiar with the basic AIDS information and it allows the

trainers to move at their own pace.

Attendance at a 2-day training session by Training
Coordinators for 30 to 35 trainers. Class size is kept small
to maximize group participation. The training coordinator —
facilitates learning activities with the trainers as learners.
Teaching methods are discussed within small and large groups,

and trainers also practice teaching their peers about AIDS.

The training is organized into 8 topics. I have submitted

copies of the "CNA Program Guide for Trainers" for the record.

 

 
 

Time does not permit me to review each topic; however, the
curriculum is culturally sensitive and the final topic
prepares the Trainers to develop their own lesson plans and
discusses marketing strategies for their HIV Instructional

Programs targeted to a specific group of health care workers.

3. Implementation of HIV Instructional Programs to at least 25
health care providers by each of the trainers in the work
settings. The trainers tailor the content to meet the target
learner's needs and selects the interactive teaching strategies
which will enhance learning of health care workers in that

setting.

All health care personnel need ongoing continuing education about AIDS.
Access to information about AIDS and infection control procedures must
be available at the work site. Based on our experience, the California

Nurses Association's makes the following recommendations:
1. TO PROVIDE AN AIDS TRAIN THE TRAINER PROGRAM FOR HEALTH CARE
PROVIDERS THROUGHOUT THE UNITED STATES, WITH THE INITIAL FOCUS ON

DEVELOPING TRAINERS IN THE TEN STATES WITH THE MOST CASES OF AIDS.

Rationale: This is the most cost effective method of educating

the large number of health care personnel in the United States.

2. TO PROVIDE ONGOING TECHNICAL ASSISTANCE TO TRAINERS THROUGH

 

 

 
 

 

4.

CONTINUING EDUCATION UPDATES AND A RESOURCE NEWLETTER OFFERED SIX
TIMES PER YEAR.
Rationale: This capitalizes on the investment because with updated

information the trainers can continue to provide ongoing education.

TO REQUIRE HEALTH CARE FACILITIES TO PROVIDE A STANDARDIZED
ORTENTATION PROGRAM ON AIDS FOR ALL NEWLY HIRED HEALTH CARE WORKERS
AND ONGOING INSERVICE EDUCATION TO KEEP ALREADY EMPLOYED

PERSONNEL INFORMED.

Rationale: The most common barriers faced by our trainers were
lack of administrative support for AIDS education and

institutional constraints such as lack of inservice time for staff.

TO DEVELOP AND IMPLEMENT A CORE CURRICULUM ON AIDS FOR ALL

STUDENTS OF HEALTH PROFESSIONS.

Rationale: To reach future health care professionals, it is
essential that the curriculum for .all.. healing arts professionals
incorporate content on the care of persons. with AIDS.

\

Thank you again for the opportunity to present testimony. The

California Nurses Association and its AIDS Education and Training

project would be more than willing to further assist the Commission in

its work.

 

 
 

PRESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
655 15th Street NW, Suite 901, Washington, D.C. 20005 (202) 245-2437

CHAIRMAN CARE HEARINGS Recommendations
Admiral James D. Watkins (Ret.}

JANUARY ]3-J5 Page ] of 2

 

RECOMMENDATIONS

 

1) To provide an AIDS Train-the-Trainer program for health care providers throughout
the United States, with the initial focus on developing trainers in the ten
states with the most cases of AIDS.-

The following cost is based on an average of 400 trainers to start in each
of the ten states with the most cases of AIDS.

Cost: $1,400,000 Based upon: 400 trainers x 10 states x $350/persc
RECOMMENDATIONS

 

2) To provide ongoing technical assistance to trainers through continuing education
updates and a resource newsletter offered six times per year.

Cost assumes 75% of the 4,000 trainers would be interested in continuing
as trainers.

 

 

 

 

 

 

Cost: $ 540,000 Based upon: 3,000 trainers x $180/person
RECOMMENDATIONS

Marilyn P. Chow, RN, DNS x wld PCy ny
Nam§1ifornia Nurses Association Signature

1855 Folsom St., Suite 670 1/11/88
Address Date

San Francisco, CA 94103 415/864-4141

 

 

City State Zip Area Code and Telephone

 

 

 
Be

PRESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
655 15th Street NW, Suite 901, Washington, D.C. 20005 (202) 245-2437

CHAIRMAN CARE HEARINGS Recommendations
Admural James D. Watkins (Ret.)

JANUARY ]3-J5° Page 20f 2

 

RECOMMENDATIONS

 

3) To require health care facilities to provide a standardized orientation program
on AIDS for all newly hired health care workers and ongoing inservice education
to keep already employed personne! informed.

Unable to make a cost estimate.

Cost: § Based upon:
RECOMMENDATIONS

 

4) To develop and implement a core curriculum on AIDS for all health care
professionals.

Difficult to make a cost estimate. Should not exceed $ 25,000

Cost: § Based upon:
RECOMMENDATIONS

 

__Marilyn Chow, RN, DNS Maloun Pan

 

 

 

Name Signature ‘
California Nurses Association
1855 Folsom St., Suite 670 — 1/11/88
Address Date
San Francisco, CA 94103 41S/ 864-4141

 

City State Zip Area Code and Telephone

 

 
 

 

ORAL STATEMENT - HELEN MIRAMONTES
NURSING CARE ISSUES AND AIDS

MADAM CHAIR, I AM HELEN MIRAMONTES, A MEMBER OF THE SANTA CLARA
CountY AIDS Task Force AnD Vice PRESIDENT oF ARIS IN SANTA CLARA
County. I AM CHAIRPERSON OF THE AMERICAN Nurses’ ASSOCIATION’S TASK
FORCE WHICH IS DEVELOPING GUIDELINES FOR NURSING CARE OF PERSONS WITH
AIDS. I WOULD LIKE TO THANK YOU ON BEHALF OF THE 188,000 MemBeRS oF
THE ANA’s 53 CONSTITUENT STATE NURSES’ ASSOCIATIONS FOR THE OPPORTUNITY
TO ADDRESS THIS COMMISSION.

YOU HAVE ASKED US TO PROVIDE RECOMMENDATIONS FROM A NURSING
PERSPECTIVE WHICH WILL FACILITATE COST EFFECTIVE, EFFICIENT DELIVERY
OF INTEGRATED QUALITY CARE TO PERSONS WITH AIDS. ANA BELIEVES THAT
THE FIRST AND MOST IMPORTANT STEP IS EXECUTIVE LEADERSHIP.

AIDS 1S A NURSING MANAGEMENT DISEASE.

OVER THE PAST THREE YEARS, ANA HAS ISSUED A NUMBER OF POLICY
STATEMENTS ON AIDS, INCORPORATING GUIDELINES ISSUED BY THE CENTER
FoR Disease Controt (CDC) AND THE SURGEON GENERAL. IN ESSENCE, WE
1) BELIEVE THAT THE MOST EFFECTIVE TOOLS FOR PREVENTING THE TRANS~
MISSION OF AIDS ARE EDUCATION AND PREVENTIVE HEALTH TECHNIQUES;

2) OPPOSE DISCRIMINATION AGAINST PERSONS WITH AIDS or A posITIve HIV;
3) SUPPORT THE AVAILABILITY OF QUALITY HEALTH CARE, THE CONFIDENTIALITY
OF THAT CARE, AND RESPECT FOR THE INDIVIDUAL AFFECTED; AND 4) SUPPORT
INCREASED FUNDING FOR RESEARCH AND EDUCATIONAL EFFORTS.

THEREFORE, OUR FIRST RECOMMENDATION, IS THAT NURSES INCORPORATE
ACCEPTED OCCUPATIONAL SAFETY AND HEALTH STANDARDS AND GUIDELINES INTO

 

 
 

-)-

THEIR NURSING EDUCATION AND PRACTICE. WE BELIEVE THAT IF NURSES UNDER-
STAND THE DISEASE AND PREVENTION MODES, THEY CAN REALISTICALLY ASSESS
THE RISKS AND TAKE APPROPRIATE PRECAUTIONS,

WE HAVE URGED (OSHA) To ADDRESS THE HAZARDS OF AIDS anp Hepatitis
B, ANA WILL PARTICIPATE IN THE OSHA RULEMAKING ON AIDS anp HEPATITIS
B THIS YEAR,

NURSING HAS A TRADITION OF PROVIDING QUALITY CARE TO THE VICTIMS
OF ONCE FATAL INFECTIOUS DISEASES SUCH AS POLTOMYELITIS, YELLOW FEVER
AND TUBERCULOSIS, WHICH MEANT ADHERING TO PROPER CONTROL PROCEDURES
TO CURB THE SPREAD OF DISEASE, THE NURSING PROFESSION CONTINUES TO
TAKE A LEADERSHIP ROLE IN PROVIDING SAFE AND EFFECTIVE CARE TO PERSONS
with AIDS. :

SECONDLY, ANA RECOMMENDS BETTER COORDINATION OF SERVICES,
FRAGMENTATION OF SERVICES IS A MAJOR PROBLEM AND CLIENTS ARE DEPRIVED
OF CARE. PROFESSIONAL NURSES WHO UNDERSTAND PHARMACOTHERAPEUTICS,
COMMUNITY RESOURCES, THE PATHOPHYSIOLOGY OF AIDS, ATTITUDE RESOLUTION
AND VALUES CLARIFICATION, ARE QUALIFIED CASE MANAGERS,

QUR THIRD RECOMMENDATION IS THAT APPROPRIATE FUNDS MUST BE GIVEN
TO FAMILY PLANNING, PUBLIC HEALTH, SUBSTANCE ABUSE AND MINORITY HEALTH
PROGRAMS SO THEY MAY BE EFFECTIVE, LACK OF FUNDING IS THE MOST COMMON
COMPLAINT. COMMUNITY OUTREACH AND EDUCATION CANNOT BE ACCOMMODATED
BECAUSE OF LACK OF PERSONNEL AND AIDS RELATED SERVICES ARE PUTTING A
STRAIN ON TRADITIONAL PUBLIC HEALTH SERVICES. |

ANA’S FOURTH RECOMMENDATION IS TO DESIGNATE SPECIFIC FUNDS FOR

 

 
 

 

-4-

ALTERNATIVE DELIVERY SYSTEMS FOR AIDS PATIENTS. MOST PERSONS WITH
AIDS CAN FUNCTION OUTSIDE OF TRADITIONAL HOSPITAL SETTINGS. HOWEVER,
THEY WILL NEED NONINSTITUTIONAL CARE.

PROVIDING ACUTE CARE FOR AIDS PATIENTS PRESENTS MANY CHALLENGES,
SOME FACILITIES HAVE FOUND IT DIFFICULT TO CREATE DESIGNATED UNITS
FoR AIDS PATIENTS. OBSTACLES ENCOUNTERED ARE RECRUITMENT COSTS, AND
A MAJOR PROBLEM IS STAFFING. ALSO THERE WILL BE AN INCREASED DEMAND
FOR PROFESSIONAL NURSING CARE IN NON-ACUTE HEALTH CARE SETTINGS.

Our FIFTH RECOMMENDATION IS TO INCREASE ACCESS TO LONG TERM CARE,
ANA SUGGESTS THAT SURPLUS ACUTE CARE BEDS BE CONVERTED TO ACCOMMODATE
LONG TERM CARE NEEDS AND FACILITIES WHICH PRESENTLY DO NOT ACCEPT

PATIENTS WITH AIDS wILL HAVE TO MODIFY SUCH POLICIES,

WHERE WILL WE FIND NURSES WHEN WE ARE IN ONE OF THE MOST SERIOUS
NURSING SHORTAGE CRISIS. CANADIAN NURSE CITES A STUDY COMPLETED AT
VANCOUVER GENERAL WHICH COSTS OUT DAILY NURSING HOURS PER AIDS PATIENT
AT 9.8 ALMOST TWICE THE COST OF WHAT WAS EXPECTED. COMPARE THAT TO AN
8.5 NURSING HOURS PER HOSPICE PATIENT. ADDITIONALLY, A New York
HOSPITAL STUDY SHOWED THAT AIDS pPaTIENTS REQUIRE ALMOST DOUBLE THE
AMOUNT OF NURSING TIME AS THOSE WHO DO NOT HAVE AIDS.

HHS PREDICTED A 40% UNDERSUPPLY OF NURSES BY 1990, BEFORE THE
ESTIMATES ON THE HEALTH CARE DEMAND OF AIDS PATIENTS WERE REPORTED,
THE GEOGRAPHIC AREAS WITH THE HIGHER SHORTAGES OF NURSES ARE ALSO
THOSE WITH THE HIGHEST PREVALENCE OF AIDS, THE GROWTH IN THE NUMBER
of AIDS PATIENTS AND THEIR INCREASED CARE NEEDS WILL MAKE THE PRO-
JECTED UNDERSUPPLY GREATER THAN 4HOQZ, |

 

 
 

-4-

ANA'S SIXTH BUT NOT THE LEAST OF ITS RECOMMENDATIONS IS FOR IN-
CREASED FUNDING OF NURSING EDUCATION. INNOVATIVE AND TRADITIONAL
INCENTIVES TO ATTRACT INTELLIGENT COMPASSIONATE PEOPLE WILL HAVE TO BE
INTENSIFIED. SCHOLARSHIPS, LOAN REPAYMENT AND LOAN FORGIVENESS FOR
STUDENTS TO PURSUE NURSING IN PUBLIC HEALTH, UNDERSERVED URBAN AREAS,
HOSPICE OR LONG TERM CARE SHOULD BE ENACTED,

ANOTHER CHALLENGE TO PROVIDING SUCH CARE AND RETAINING NURSES IS
THE PSYCHOLOGICAL WELL BEING OF THE PROVIDER. HEALTH AGENCIES ARE
REPORTING THAT RECRUITMENT OF NURSES IS HAMPERED BY FAMILY RESISTANCE
TO NURSES CARING FOR AIDS PATIENTS, IF WE DO NOT ADDRESS THESE ISSUES,
WE WILL FACE FURTHER RETENTION AND RECRUITMENT PROBLEMS IN NURSING,

QUR SEVENTH RECOMMENDATION IS THAT FUNDING CONTINUE FOR NURSING
RESEARCH ON AIDS at THE CENTER FOR NursING RESEARCH,

FINALLY, WE RECOMMEND THAT FUNDS TO PROVIDE EDUCATION, TREATMENT,
PREVENTION, OUTREACH AND RESEARCH ON AIDS NoT BE SURFEITED FROM OTHER
PUBLIC HEALTH PROGRAMS, A SIGNIFICANT NUMBER OF INDIVIDUALS WHO MAY
BE AT RISK OF AIDS ARE CONSIDERED HIGH RISK IN OTHER HEALTH RELATED
AREAS: INFANT MORTALITY, SUBSTANCE ABUSE, CANCER, CARDIAC DISEASE,
STRESS AND VIOLENCE,

NURSES ARE IN A UNIQUE POSITION TO OFFER LEADERSHIP AND ANA
PLEDGES TO CONTINUE ITS ROLE IN THE COMMUNITY AND THE PROFESSION IN
PROMOTING AIDS PREVENTION AND EDUCATION, WE ARE PLEASED THAT NURSING
HAS BEEN REPRESENTED ON THIS COMMISSION SINCE ITS INCEPTION. SUCH
FORESIGHT WILL HOPEFULLY FACILITATE YOUR DEVELOPMENT OF A LOGICAL,

 

 

 
 

 

-5- .

SCIENTIFIC AND HUMANE RECOMMENDATION OF A NATIONAL PUBLIC HEALTH AIDS
POLICY FOR THE PRESIDENT. WE HOPE STATE AND LOCAL OFFICIALS WILL
RECOGNIZE THAT NURSING MUST BE INCLUDED IN AIDS PUBLIC POLICY DEVELOP-
MENT AND NOT JUST IN THE CLINICAL SETTING,

DRR:mm

 

 
 

 

 

Text of Testimony Given to
Presidential Commission on HIV Epidemic
January 15, 1988
by Mary D. Naylor, PhD, FAAN, RN
Associate Dean and Director of Undergraduate Studies
University of Pennsylvania, School of Nursing
Introduction

An acute shortage of qualified nurses exists in this country, with far
reaching implications for the health of this nation. This situation is
compounded by a significant decrease in nursing school enrollments and a
dramatic decline in the national pool of high school and college students
indicating an interest in nursing. These major changes in the current and
future supply of nurses are occurring at a time when the need for highly
sophisticated, caring nurses is more urgent than at any other period in the
profession's history.

A major factor contributing to the increased demand for competent, caring
nurses today and for years to come is the HIV epidemic. An adequate supply of
nurses willing and able to dedicate themselves to the special needs of AIDS
victims is critical to the development of an effective and affordable continuum
of services for this population.

A recent national study revealed that the inadequacy of existing student
financial aid programs has contributed significantly to the decline in nursing
school enrollments. The following recommendations are directed at enhancing
this nation's ability to recruit and prepare qualified nurses for the care of

AIDS patients and their families by strengthening the financial aid programs

available to prospective students:

 

 
 

1. Work-Study and Work Grant Programs

The establishment of work-study and work-grant programs 1s the focus of
the first recommendation. A work-study program would enable students to
work during the summer and school year as nurse assistants in hospitals,
community centers or shelters that care for AIDS patients and their
families. This program could provide tuition support, and at the same
time, enable students to learn essential skills in the care of this
population. A work-grant program would enable nursing students to devote
their time to study by receiving tuition support. In return for tuition,
the student would agree to work for a period of time after graduation in a
setting providing care for AIDS patients.

Projected Cost--$8 million

2. Demonstration Projects
The second recommendation is to increase appropriations under Special

Projects in the Division of Nursing (current allocation--$11,680,000) for
demonstration projects that develop and disseminate the following
information:

a) Model curriculum plans for undergraduate and graduate nursing

programs that are designed to provide essential knowledge and skills in

the care of AIDS patients.

b) Programs to prepare nursing faculty to teach students about the care

of AIDS patients and their families.

c) Programs to address the concerns of prospective nursing students re:

the care of AIDS patients and the knowledge and skills nurses receive to

protect themselves and their families.

 

 
 

 

 

d) Multidisciplinary education programs for the care of AIDS patients.

Projected Cost--$5 million

3. Nursing Student Loan Program

A third recommendation is to increase the authorization to the Nursing
Student Loan Program and decrease the restrictions associated with this
program.* The increased funds could be earmarked as a payback option.
Students who receive monies from these funds could elect to pay loan back
through traditional means or through service to AIDS patients.
*(Note: Currently, students can receive a maximum of $10,000 ($2,500/4
years) under this fund. The NSLP has had no new monies added to this
revolving fund for the past few years. This program has been reauthorized
to include only those in "exceptional financial need". To receive funds,
students can earn no more than 50% of what it would cost to go to school.
Because of these and other restrictions, many schools of nursing have
dropped out of this progran.

Projected Cost--$10 million

4. Medicare Pass-Through

A fourth recommendation is to earmark Medicare pass-through monies for
direct costs associated with educating nursing students for the care of
AIDS patients. These monies should be used to provide faculty salary
support and related costs as well as to provide stipends for graduate
nursing students who are preparing for specialty roles in the care of AIDS
patients. Medicare monies should be provided only to those hospitals who
have a contractual relationship with schools of nursing to use these monies
for nursing student education.

Projected Cost--$6 million.

 

 
 

5. Advanced Nurse Training
My final recommendation is to increase advanced nurse training (current

appropriation--$16,755,000) and nurse practitioner (current

appropriation--$11, 489,000) appropriations. Special priority should be

paid to those advanced nursing programs that prepare clinical specialists

and nurse practitioners for the care of AIDS patients.

Projected Cost--$8 million

Nurses have always provided skillful, compassionate care to persons
regardless of their age, sex, race, social class, educational background,
religion, or medical diagnosis. Nurses throughout this country are
demonstrating their daily willingness to continue this tradition in the face of
considerable stress. Until a cure for the disease is found, persons with AIDS
will look to nurses to help them live out their lives with dignity. A major
national resource, nursing needs te be supported in its efforts to meet the
formidable challenges that AIDS poses to this country today and in the future.

Thank you.

 

 
 

 

 

 

MEDICAL CASE MANAGEMENT

661 Andersen Drive
Pittsburgh, PA 15220
(412) 928-9400

Good afternoon, my name is Dianne Luby and I am the Operations Manager for
EQUICOR's Medical Case Management (MCM) program. MCM is a cost containment
product that is intended to produce significant savings for our clients
(employers) on their catastrophic illness and injury claims without
compromising the quality of care.

The group insurance industry has been undergoing dramatic changes in recent
years. Traditional insurance is based on the concept of evaluating and
Sharing risk. Group insurance premiums are based on assigning a
probability factor to the possibility of illness or injury. We predict
future utilization by examining past experience. The risk is shared by
large numbers of people in a pool.

Due to the increasing cost of group insurance, more and more employers have
chosen to be self insured. The concept is the same, however the risk is
theirs and spread over only the employees in their own group. The group
does not pay a premium, but rather they pay the actual cost of their own
claims plus a fee to an insurance company to administer their claims.

It is highly speculative to predict AIDS costs because on AIDS we have
little past experience, no prior utilization, and therefore no way to
scientifically predict future costs.

As an insurance company, our solution to increased costs is to increase
premiums. We raise the premium based on experience and pass that cost on
to our clients. This has caused more groups to choose self insurance.

This situation may cause PWA to experience increasing barriers to care.
More and more employers are choosing not to, or investigating not to, cover
AIDS as part of their health care benefits insurance program. If a group
is self insured and is attempting to write exclusions into its policy to

protect against paying for AIDS treatment, it is doing so because of fear
of costs. Small employers are particularly vulnerable and fear bankruptcy

of their insurance plan if they cannot protect themselves from this AIDS
epidemic.

EQUICOR's solution has been to try to find an answer to control costs for
our clients and not to avoid them.

We have added AIDS to the list of illnesses and injuries we cover under the
Medical Case Management program. Onder our program each case is viewed as
a unique situation with no standard right or wrong approach.

 

 

 

 

 

 
 

 

For purposes of illustration, I have attached a summarized version of a
fairly typical case report. Our clients have purchased this service
because they view it as an added employee benefit in the time of an
emergency illness or injury, and because they feel costs can be contained
if these types of cases have "medical logic" applied to their management.

To quickly summarize this case and, in fact, the majority of our AIDS cases
is to say that standard health care coverage is not the most logical in the
treatment of AIDS. On this diagnosis, cost is a factor because what is
normally reimbursed is not what is most prudent. Collectively then the
PWA, the insurer, and the employer lose out.

The stages of deterioration in AIDS and preferred methods of treatment at
each level have been well documented and our program subscribes to these.
By attempting to maintain a person with AIDS in their home, we reimburse
for a continuum of services: homemaker activities, attendant care, skilled
nursing, and associated therapies. We make benefit exceptions and fund for
controlled approval items if we can manage symptoms and prevent
hospitalizations. ,

At the conclusion of each case we handle, we provide a cost benefit
analysis documenting what the potential costs would have been utilizing
their standard benefit plan, and what actual costs were under our case
management program.

Since 1985, 237 AIDS cases have been referred to us. The number of
referrals increased 305% from 1986 to 1987. Claim dollar expenditures
with Medical Case Management have ranged from $1,000 to 133,000. For cases
which we have managed and closed, our average claims cost per case is
$22,110. This number reflects experience only after we picked up the
case: claims prior to receiving the referrals are not included. The
average cost of claims without our involvement is estimated at $34,278.

AS our number of cases has increased, we have learned valuable management
lessons. We maintain an extensive resource system of providers who we have
had success with and whose costs are competitive. We are negotiating
discount contracts with them for future services.

Our number one recommendation is for early involvement using a case
Management approach. Case managers should be given the authority to fund
for alternative care to inpatient hospitalization when it can be cost
justified.

Most importantly, education must be carried out to show employers that AIDS
cases can be handled at reduced costs in catastrophic case management

programs. If exclusions for AIDS treatment become the norm, then the
public sector will bear an even larger share of the responsibility.

0984M/011438

 

 
 

 

f got

MEDICAL CASE MANAGEMENT

661 Andersen Drive
Pittsburgh, PA 15220
(412) 928-9400

PINAL STATUS REPORT

POLICYHOLDER: XYZ Company
POLICY #: 0000

BRANCH #: 1

MCM CASE #: 0000-0001

PREPARED BY: Supporting Material for Dianne Luby's Presentation .

 

 

 

 

 
 

 

 

f ne
Diagnosis Acquired Immune Deficiency Syndrome (AIDS)

Medical Status

The claimant was a 49 year old male with AIDS. His initial symptoms began in
October, 1986 and included chills, fever, and malaise. He was hospitalized in
November for diagnosis and treatment of his symptoms . The diagnosis of AIDS
was made based on a history of fevers, night sweats, weight loss,
lymphadenopathy and the presence of the opportunistic infection, pneumocystis
Pneumonia. At this time his case was referred to EQUICOR's Medical Case '
Management program as the diagnosis triggered a referral from our hospital Pre
Admission Review program. The claimant was treated with the appropriate
antibiotics and his condition improved. He was discharged from the hospital
and made gains in strength and endurance over the next few months experiencing
no adverse complications. During this time MCM remained in contact with the
claimant in order to monitor his medical status and to begin to find resources
that he would need as his illness progressed.

In June, 1987, the claimant began experiencing fatigue. He became exhausted
at times and could not prepare his meals.

Management Plan

MCM's intervention on this case and cost substantiation were based on a plan
to maintain the claimant at home and prevent costly hospitalizations. When
the claimant became so fatigued, he could not prepare his meals, MCM
authorized expenditures for homemaker services. Meal preparation,
housekeeping, and assistance in travel to the physician's office was given by
the homemaker four hours per day, three days per week. This assisted in
prevention of malnutrition, dehydration, and a physical state so poor that any
infection would severely compromise his health.

At the time of MCM's initial involvement in the case, local support groups had
been researched and a list was given to the claimant. It was at this point
that the claimant became involved with them. Volunteers assisted him in
coping with the prognosis of his disease. These volunteers also spent time
with him when the homemaker was not there.

The claimant's condition continued to deteriorate. His level of fatigue
increased, weight loss, vomiting, and diarrhea were common, and neurological
impairment became evident. MCM continued to work with the physician and
Maintain the claimant at home. As with all AIDS victims there are "good" days
and "bad" days. MCM worked with a Home Health Agency that specialized in the
treatment of AIDS victims. As the claimant's needs increased, his level of
assistance at home was raised. Nurse attendants supervised by RNs were
indicated. Attendant care with skilled nursing visits and supervision was
authorized for approximately one month. When IV antibiotics and aerosal
pentamadine treatment were necessary, it was given at home. The support
groups MCM had recommended assisted with these programs.

0007B/011288

 
 

 

-2-

I

In October, 1987, the claimant suffered a severe bout of cytomegalovirus
(CMV). His physical and mental status were severely compromised. At this
point the hospice program was activated. The level and amount of in-home
skilled nursing care and support was increased according to the patient's
needs and good medical practice which was coordinated with the claimant's
Physician. The claimant died at home on October 26, 1987 where he was most
comfortable and in the company of his family and friends.

With MCM's involvement, the number of hospital days were significantly reduced
and a quality medical: care and cost-effective program was utilized. The
claimant's wish to die in an atmosphere that was familiar and took into

account his physical, emotional, and spiritual needs was supported and
provided.

0007B/011288

 

 
 

 

Cost Benefit Analysis
(November, 1986 - October, 1987)

l. Potential Claim Dollar Expenditure
Without MCM

a. Repeated hospitalizations
for treatment of AIDS'
complications (i.e. mal-
nutrition, dehydration,
antibiotic therapy, pain
management). One per month
7 day stay at $600.00 per
day $ 16,800.00

b. MD hospital visits at $75.00
per day $ 2,100.00

c. Hospitalization for end stage

AIDS for 14 days at $1,000.00

per day in Intensive Care Unit $ 14,000.00
d. MD visits at $100.00 per day $ 1,400.00

e. Visiting Nurse one time per day
for one week after each dis-

charge $ 1,680.00
Twice per week after
that at $60.00 per visit $ 960.00

f. Weekly MD visits (when not
in hospital) 13 visits at
$75.00 per visit $ 975.00

g. Medications $ 3,000.00

Total $ 40,915.00

2. Actual Claim Dollar Expenditure
With MCM

a. Monitoring claimant status
(November, 1986 to June, 1987) $ -- 0 --

b. Homemaker four hours per day,
three days per week for 12 weeks
(June, 1987 to August, 1987)
at $9.00 per hour $ 1,296.00

C. ttendant care eight hours
per day, seven days per week
for four weeks (September at
$11.00 per hour) $ 2,464.00

0007B/011188

 

 
 

 

d. Monthly MD visits at $75.00
per visit (June, 1987 to
August, 1987)

e. Weekly MD visits at $75.00
per visit (September, 1987
to October 26, 1987)

f. Sixteen hour attendant care
with RN visits for three weeks
(October) attendant $240.00
per day
RN visits $60.00 per visit
Volunteers eight hours per day

g.- In-home IV antibiotics and
Aerosol treatments (based on
actual bill)

h. Support groups

Total

3. MCM Savings

0007B/011188

$ 225.00
$ 600.00
3,696.00
1,260.00

=~ 0 --

$ 2,000.00
$ 0 -

$11,541.00

2

374.00

 

 
 

 

STATEMENT BY

DAVID A, RUST

ASSOCIATE COMMISSIONER FOR DISABILITY

SOCIAL SECURITY ADMINISTRATION

ACCOMPANIED BY

STEVE GOSS

OFFICE OF THE ACTUARY

SOCIAL SECURITY ADMINISTRATION:

BEFORE THE

PRESIDENTIAL COMMISSION ON THE.

HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
JANUARY 15, 1988

 

 
 

 

4159V
PRESENTATION ON AIDS
PRESIDENTIAL COMMISSION ON THE
HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
JANUARY 15, 1988

I AM PLEASED TO BE HERE TODAY TO DISCUSS THE EVALUATION OF
CLAIMANTS WITH ACQUIRED IMMUNODEFICIENCY SYNDROME (AIDS) UNDER
THE SOCIAL SECURITY AND SUPPLEMENTAL SECURITY INCOME (SSI)
DISABILITY PROGRAMS, WE SHARE YOUR CONCERN ABOUT THE NEEDS OF
AIDS PATIENTS AND WE ARE COMMITTED TO PROVIDING PROMPT,

EFFICIENT, AND COMPASSIONATE SERVICE.

EVALUATION OF AIDS CASES

THE DEFINITION OF DISABILITY FOR THE SOCIAL SECURITY AND THE
SOI DISABILITY PROGRAMS IS AN INABILITY TO ENGAGE IN ANY
SUBSTANTIAL GAINFUL ACTIVITY (SGA) BY REASON OF ANY MEDICALLY
DETERMINABLE PHYSICAL OR MENTAL IMPAIRMENT WHICH CAN BE
EXPECTED TO RESULT IN DEATH OR WHICH HAS LASTED OR CAN BE
EXPECTED TO LAST FOR AT LEAST 12 MONTHS. CLAIMANTS WITH AIDS
MEET THIS DEFINITION.

MEDICARE BENEFITS ARE AVAILABLE AFTER A SOCIAL SECURITY
DISABILITY BENEFICIARY HAS RECEIVED PAYMENTS FOR 24 MONTHS:
MEDICAID BENEFITS ARE GENERALLY AVAILABLE UPON ELIGIBILITY FOR
SSI PAYMENTS.

 

 
 

 

* 2

2 1%

I WILL BRIEFLY DESCRIBE HOW WE EVALUATE A CLAIM FOR DISABILITY
BENEFITS IN GENERAL AND WHAT OUR POLICY IS IN AIDS CLAIMS. WE
FOLLOW A FIVE-STEP SEQUENTIAL EVALUATION PROCESS IN DETERMINING
IF A PERSON MEETS THE DEFINITION OF DISABILITY IN THE SOCIAL
SECURITY LAW. HOWEVER, IF A DECISION THAT A PERSON IS OR IS
NOT DISABLED CAN BE MADE AT ANY STEP, EVALUATION UNDER
SUBSEQUENT STEPS IS NOT NECESSARY. THESE STEPS ARE DETERMINING
IF:

(1) THE CLAIMANT IS WORKING AND EARNING OVER THE SGA LIMIT;
(2) THE PERSON HAS A SEVERE IMPAIRMENT:

(3) THE IMPAIRMENT MEETS OR EQUALS THE REQUIREMENTS OF THE
LISTINGS OF IMPAIRMENTS IN THE REGULATIONS;

(4) THE CLAIMANT HAS THE CAPACITY TO DO PAST WORK; AND

(5) THE CLAIMANT HAS THE CAPACITY TO DO OTHER WORK BASED ON
HIS OR HER AGE, EDUCATION, AND WORK.EXPERIENCE,

AIDS WAS IDENTIFIED BY THE CENTERS FOR DISEASE ConTtROL (CDC) IN
THE SUMMER OF 1981, AND THE CDC PUBLISHED CRITERIA FOR
IDENTIFYING AIDS CASES. BY THE SUMMER OF 1983, AIDS WAS
BECOMING A NATIONAL HEALTH PROBLEM AND SSA RECOGNIZED THAT A
PERSON WHO MET THE CDC CRITERIA FOR AIDS HAD SUCH A SEVERE

 

 
 

 

IMPAIRMENT THAT HE OR SHE MET THE STATUTORY DEFINITION OF
DISABILITY. THUS, WE ISSUED INSTRUCTIONS TO OUR ADJUDICATORS
THAT A PERSON WITH CDC=DEFINED AIDS HAS AN IMPAIRMENT THAT
MEETS OR EQUALS THE LEVEL OF SEVERITY IN THE LISTING OF
IMPAIRMENTS, AND AS LONG AS THE PERSON IS NOT WORKING, SHOULD
BE FOUND DISABLED ON A MEDICAL BASIS ALONE. CDC REVISED ITS
DEFINITION OF AIDS EFFECTIVE SEPTEMBER 1, 1987. THE REVISED
CDC DEFINITION REFLECTS MEDICAL ADVANCES MADE SINCE THE VIRUS
CAUSING AIDS WAS IDENTIFIED AND THE HUMAN IMMUNODEFICIENCY
VIRUS (HIV) TEST WAS AVAILABLE. IT INCLUDES TWO NEW CONDITIONS
(HIV ENCEPHALOPATHY ("DEMENTIA") AND HIV “WASTING” SYNDROME)
WHICH WERE PREVIOUSLY CONSIDERED TO COME UNDER THE AIDS-RELATED
COMPLEX (ARC) UMBRELLA, AS WELL AS CHANGES WHICH PRIMARILY
RELATE TO THE DOCUMENTATION REQUIREMENTS TO SUPPORT A DIAGNOSIS
OF AIDS.

WE HAVE INCORPORATED THE RECENTLY REVISED, MORE INCLUSIVE CDC
CRITERIA FOR AIDS INTO OUR DISABILITY EVALUATION GUIDES.

SINCE AIDS AS "DEFINED" BY CDC IS NOT NECESSARILY INTENDED TO
DESIGNATE DISABILITY, WE WILL CONTINUE TO FOLLOW FUTURE
DEVELOPMENTS REGARDING THE CDC'S "DEFINITION" OF AIDS, AND WE
WILL CONSIDER REVISIONS TO: OUR EVALUATION GUIDELINES WHEN
APPROPRIATE.

 

 
 

 

SSA HAS CONVENED A SMALL PANEL OF PHYSICIANS TO CONSIDER
REVISIONS TO BODY SYSTEM LISTINGS AND ONE OF THE ISSUES THEY
WILL DISCUSS IS DEVELOPING LISTING CRITERIA FOR AIDS. AFTER WE
RECEIVE THEIR RECOMMENDATIONS, WE WILL TAKE APPROPRIATE ACTION
TO ESTABLISH A SEPARATE LISTING FOR AIDS.

IF A PERSON WHO ALLEGES AIDS DOES NOT HAVE ONE OF THE
CONDITIONS THAT IS INDICATIVE OF AIDS AND THUS CANNOT BE
AUTOMATICALLY ASSUMED TO MEET THE SOCIAL SECURITY DEFINITION OF
DISABILITY, SSA EVALUATES THE CLAIM THROUGH THE FULL SEQUENTIAL
EVALUATION PROCESS. IF THE PERSON HAS A SEVERE IMPAIRMENT
WHICH PREVENTS HIM OR HER FROM DOING PAST WORK OR OTHER WORK,
DISABILITY°“BENEFTS ARE AWARDED. THIS IS OFTEN THE SITUATION IN
ARC CASES, WHERE THE FUNCTIONAL IMPACT OF THE IMPAIRMENT CAN
VARY WIDELY.

SSI PRESUMPTIVE DISABILITY IN AIDS CASES

A CLAIMANT FOR SSI DISABILITY BENEFITS MAY RECEIVE UP TO

3 MONTHS' PAYMENTS IF HE OR SHE IS PRESUMPTIVELY DISABLED (AND
OTHERWISE ELIGIBLE) BEFORE SSA MAKES A FORMAL DISABILITY
DETERMINATION. PRESUMPTIVE PAYMENTS ARE NOT CONSIDERED
OVERPAYMENTS IF SSA LATER DETERMINES THAT THE PERSON IS NOT
DISABLED.

 

 
In 1985, SSA ISSUED REGULATIONS TO AUTHORIZE OUR LOCAL OFFICES
TO MAKE A FINDING OF PRESUMPTIVE DISABILITY IN AIDS CASES AFTER
A CONFIRMING CONTACT IS MADE WITH A PHYSICIAN OR OTHER TREATING
SOURCE THAT AIDS HAS BEEN DIAGNOSED AND THAT IT HAS PROGRESSED
TO THE POINT THAT THE INDIVIDUAL IS UNABLE TO WORK. (STATE
AGENCIES WERE REMINDED AS EARLY AS 1983 TO USE THEIR EXISTING
AUTHORITY TO CONSIDER AIDS CASES FOR PRESUMPTIVE DISABILITY.)
THIS POLICY HAS BEEN VERY HELPFUL IN EASING THE FINANCIAL
PLIGHT OF MOST AIDS CLAIMANTS. THE PERSON MAY THEN BE
IMMEDIATELY ELIGIBLE FOR MEDICAID BENEFITS.

SA OUTREACH ACTIVITIES

SSA REGIONAL AND FIELD OFFICES CONDUCT OUTREACH ACTIVITIES FOR
PEOPLE WITH AIDS. FOR EXAMPLE, SOME OF THE INITIATIVES
UNDERWAY IN OUR REGIONAL OFFICES INCLUDE:

0. HAVING A TELECLAIMS PROCEDURE FOR AIDS CLAIMANTS;

O MAINTAINING. STRONG LIAISONS WITH LOCAL HOSPITALS AND
ASSIST GROUPS;

'':  @. SETTING UP SPECIAL ARRANGEMENTS WITH ADVOCACY GROUPS

 

OWE ye ‘AND OTHER HEALTH AND SOCIAL AGENCIES TO ASSIST THEM IN
r TAKING CLAIMS FROM INDIVIDUALS WITH AIDS OR ARC, OR IN
REFERRING THESE CLAIMANTS TO SSA; AND

 
 

 

0 CONDUCTING SEMINARS WITH MEDICAL GROUPS AND HOSPITAL
STAFFS TO EXPLAIN OUR EVIDENTIARY REQUIREMENTS IN ORDER
TO SPEED DISABILITY DETERMINATIONS.

IMPACT ON SOCTAL SECURITY AND SUPPLEMENTAL SECURITY INCOME
DISABILITY PROGRAMS

NATIONALLY, SOCIAL SECURITY DISABILITY INSURANCE BENEFICIARIES:
WITH AN AIDS DIAGNOSIS HAVE BEEN PREDOMINANTLY MALE, 95
PERCENT, WITH AN AVERAGE AGE OF ABOUT 38 YEARS. IN THE SSI.
PROGRAM, ABOUT 90 PERCENT OF THE RECIPIENTS ARE MALE AND THE
AVERAGE AGE IS SLIGHTLY LOWER. ABOUT 44 PERCENT OF THE
RECIPIENTS HAVE BEEN FROM NEW YORK OR CALIFORNIA.

AS OF NOVEMBER 26, 1987, WE HAVE RECEIVED 20,657 CLAIMS FOR
DISABILITY BENEFITS UNDER THE TWO PROGRAMS BASED ON AIDS OR
ARC. WE HAVE AWARDED BENEFITS IN OVER 98 PERCENT OF THE AIDS
CASES AND IN 68 PERCENT OF THE ARC CASES == AN OVERALL AWARD
RATE OF 94 PERCENT.

IF WE FOCUS ONLY ON THE SOCIAL SECURITY DISABILITY TRUST FUND
BENEFICIARIES, WE FIND THAT OF THE 13,000 CASES AWARDED THROUGH
JUNE, 1987, ONLY 46 PERCENT WERE STILL LIVING IN JUNE. ©

 

 
 

LESS THAN 2O PERCENT OF THOSE WHO BEGAN TO RECEIVE BENEFITS
BEFORE 1986 ARE STILL ALIVE. THE DATA SUGGESTS THAT THE SSI
EXPERIENCE IS SIMILAR.

IT IS ESTIMATED THAT THE RAPID GROWTH IN THE NUMBER OF NEW
DISABILITY AWARDS ON THE BASIS OF AIDS OR ARC WILL CONTINUE.
HOWEVER, THE ASSUMPTIONS NECESSARY TO MAKE MEANINGFUL
ASSESSMENTS OF THE IMPACT OF AIDS ON THE DISABILITY INSURANCE
AND THE SSI PROGRAMS, BEYOND THE VERY NEAR TERM, ARE DIFFICULT
TO NARROW DOWN. THERE, ARE FOUR BASIC ASSUMPTIONS THAT ARE
NECESSARY TO MAKE MEANINGFUL PROJECTIONS, EVEN IN THE SHORT
TERM:

{. NUMBER OF NEW CASES IN FUTURE YEARS.

2. PROPORTION OF ALL CASES WHICH RESULT IN DISABILITY
INSURANCE OR SSI CLAIMS.

3. AVERAGE LEVEL OF BENEFITS RECEIVED.
4. AVERAGE DURATION ON THE DISABILITY ROLLS.
IN THE NEAR TERM, 4-5 YEARS, WE ESTIMATE THAT AIDS/ARC SOCIAL

SECURITY DISABILITY INSURANCE AND SSI PAYMENTS WILL GROW FASTER
THAN OVERALL DISABILITY INSURANCE AND SSI PROGRAM COSTS.

 

 

 
 

 

8

HOWEVER, THE ESTIMATED AIDS/ARC COSTS IN 1992 STILL REPRESENT
LESS THAN 2 PERCENT OF THE TOTAL SOCIAL SECURITY DISABILITY
INSURANCE BENEFITS ESTIMATED TO BE PAID IN THAT YEAR, AND ALSO
LESS THAN 2 PERCENT OF THE SSI DISABILITY PROGRAM COSTS. FOR
THE SHORT TERM, AIDS/ARC COSTS DO NOT APPEAR TO PRESENT A
SIGNIFICANT THREAT TO THE FINANCIAL WELL-BEING OF THE SOCIAL
SECURITY DISABILITY INSURANCE TRUST FUND OR THE SSI PROGRAM.

OF COURSE ANY ESTIMATES ON THE INCIDENCE OF AIDS AND RESULTING
COSTS TO THE DISABILITY TRUST FUND AND THE SSI PROGRAM ARE
SUBJECT TO SUBSTANTIAL UNCERTAINTY. (THE EFFECTS OF AZT AND
OTHER DRUGS OR TREATMENTS COULD INCREASE OR DECREASE THE
PROPORTION OF AIDS PATIENTS AMONG TOTAL DISABILITY
BENEFICIARIES.) GIVEN THE UNCERTAINTY SURROUNDING THE
PROJECTIONS OF AIDS/ARC COSTS, IT IS CLEAR THAT THE SITUATION
WARRANTS THE CLOSE MONITORING WHICH IT WILL CONTINUE TO RECEIVE.

CONFIDENTIALITY OF SOCIAL SECURITY RECORDS

SSA HAS ALWAYS MAINTAINED A HIGH DEGREE OF CONFIDENTIALITY FOR
ALL PERSONAL INFORMATION IN ITS FILES. THE ADMINSTRATION'S
BASIC DISCLOSURE POSITION RESTS ON A PRINCIPLE THAT HAS BEEN
FUNDAMENTAL POLICY SINCE THE BEGINNING OF THE PROGRAM 50 YEARS
AGO--THAT SSA WILL PROTECT THE CONFIDENTIALITY OF PERSONAL
INFORMATION ACQUIRED IN ADMINISTERING ITS PROGRAMS SO THAT
INDIVIDUALS WILL FEEL FREE TO DIVULGE ALL INFORMATION THAT IS

 

 
9:

NEEDED FOR A COMPLETE AND ACCURATE ASSESSMENT OF INDIVIDUAL
CLAIMS FOR BENEFITS.

THE ADMINISTRATION'S BASIC PRINCIPLE ON DISCLOSURE OF
INFORMATION IS EMBODIED IN REGULATION NO. 1 (20 CFR, PART 401),
IMPLEMENTING THE PRIVACY AND DISCLOSURE PRINCIPLES OF THE
PRIVACY ACT, THE FREEDOM OF INFORMATION ACT, AND SECTION 1106
OF THE SOCIAL SECURITY ACT. THESE PROVISIONS APPLY EQUALLY TO
THE ADMINISTRATION ITSELF AND TO AGENTS AND CONTRACTORS OF SSA
AND THEIR EMPLOYEES.

EVEN THOUGH LAW AND REGULATIONS ALLOW ROUTINE DISCLOSURE OF
INFORMATION FROM SOCIAL SECURITY RECORDS FOR PURPOSES RELATED
TO HEALTH OR INCOME MAINTENANCE PROGRAMS, WE HAVE CONCLUDED
THAT INDIVIDUALLY IDENTIFIABLE DIAGNOSIS INFORMATION SHOULD NOT
BE ROUTINELY MADE AVAILABLE. BEYOND THE HIGH LEVEL OF PRIVACY
PROTECTION GIVEN TO PERSONAL INFORMATION IN GENERAL, SSA HAS
ALWAYS MAINTAINED EVEN STRICTER LEVELS OF PROTECTION FOR
MEDICAL INFORMATION.

ACCORDINGLY, WE DO NOT DISCLOSE SUCH INFORMATION CONCERNING
AIDS VICTIMS WITHOUT AUTHORIZATION BY THE SUBJECT INDIVIDUAL.

MR. CHAIRMAN, THIS CONCLUDES MY STATEMENT. I HOPE I HAVE
RESPONDED TO YOUR AREAS OF INTEREST. IT HAS BEEN MY PLEASURE
TO BE HERE, AND I WILL BE GLAD TO PROVIDE ANY ASSISTANCE I CAN
IN THE FUTURE. I WOULD BE HAPPY TO ANSWER ANY QUESTIONS YOU
MAY HAVE. a

 

 
 

 

f

THE COST OF CARE FOR PATIENTS WITH AIDS AND
AIDS-RELATED DISORDERS IS RAPIDLY EMERGING AS A
MAJOR HEALTH POLICY CONCERN. THE HEALTH CARE
FINANCING ADMINISTRATION (HCFA) PLAYS A CENTRAL
ROLE IN FINANCING CARE FOR AIDS PATIENTS.
NATIONALLY, AN ESTIMATED 40% OF ALL PATIENTS WITH
AIDS ARE SERVED UNDER MEDICAID, BUT IN AREAS SUCH
AS NEW YORK CITY AND NEW JERSEY THE PROPORTION
MAY BE AS HIGH AS 65% to 70%.

MEDICAID NOW BEARS NEARLY 25% OF THE TOTAL
MEDICAL CARE COST OF AIDS. HOWEVER, DEPENDING
UPON THE SPREAD OF AIDS AMONG INTRAVENOUS DRUG
ABUSERS, THEIR SEXUAL CONTACTS, AND LOW INCOME
INDIVIDUALS, THIS COULD RISE.

LET ME BRIEFLY EXPLAIN THE MEDICAID AND
MEDICARE PROGRAMS. MEDICAID IS A JOINTLY FUNDED
PROGRAM BETWEEN THE FEDERAL GOVERNMENT (55%) AND
THE STATES (45%). MEDICAID OPERATES UNDER BROAD
FEDERAL GUIDELINES WITH CONSIDERABLE DISCRETION

 

 
 

 

2

LEFT TO STATES ABOUT MANY ISSUES, INCLUDING
ELIGIBILITY AND COVERAGE FOR SERVICES. MOST
PATIENTS WITH AIDS BECOME ELIGIBLE FOR MEDICAID
BY BECOMING DISABLED AND MEETING THE REQUIREMENTS
OF THE SUPPLEMENTAL SECURITY INCOME PROGRAM.
OTHER PERSONS BECOME ELIGIBLE BY BEING IN
"CATEGORICALLY ELIGIBLE" PROGRAMS SUCH AS AID TO
FAMILIES WITH DEPENDENT CHILDREN (AFDC), OR BY
BEING "MEDICALLY NEEDY."

MEDICARE IS A TOTALLY FEDERALLY FUNDED
PROGRAM WHOSE BENEFITS ARE AVAILABLE TO THOSE 65
YEARS OF AGE AND OLDER, TO THOSE WHO SURVIVE A
24-MONTH WAITING PERIOD AFTER BECOMING DISABLED
AND RECEIVING SOCIAL SECURITY DISABILITY
BENEFITS, AND TO THOSE WITH END STAGE RENAL
DISEASE. BECAUSE VERY FEW PATIENTS ARE 65 YEARS
OR OLDER AND BECAUSE MOST DIE WITHIN 2 YEARS OF
DIAGNOSIS, ONLY A SMALL PERCENTAGE (LESS THAN 1%)
ARE ON MEDICARE.

PROJECTIONS HAVE BEEN MADE REGARDING THE
FINANCIAL IMPACT OF AIDS TO THE MEDICAID AND
MEDICARE PROGRAMS. IN FY88 WE ESTIMATE THAT $600
MILLION WILL BE SPENT ON AIDS IN THE MEDICAID

 

 
 

 

3

PROGRAM. THIS WILL RISE TO NEARLY $2.4 BILLION
DOLLARS BY FY$2. THESE COSTS DO NOT INCLUDE THE
COSTS OF AZT WHICH WERE ESTIMATED TO BE $50
MILLION IN 1987, AND WHICH COULD REACH $120
MILLION IN 1988. ALTHOUGH OUTLAYS FOR AIDS IN
THE MEDICAID PROGRAM ARE EXPECTED TO GROW RAPIDLY
IN THE COMING YEARS, THESE AMOUNTS ARE ONLY

EXPECTED TO BE 3.0% OF THE TOTAL MEDICAID BUDGET
IN FY92.

PROJECTIONS REGARDING THE FINANCIAL IMPACT OF
AIDS TO MEDICARE ARE FAR LESS —= APPROXIMATELY
$15 MILLION IN FY88 RISING TO $60 MILLION BY 1992
(THESE ESTIMATES CURRENTLY DON'T ASSUME INCREASED
LONGEVITY OF AIDS PATIENTS DUE TO AZT OR OTHER
NEW THERAPIES).

THE HEALTH CARE FINANCING ADMINISTRATION
WISHES TO SET OUT FOUR BASIC PRINCIPLES WHICH
SHOULD BE APPLIED TO FINANCING THE CARE OF AIDS
PATIENTS, AND ACCESS OF PATIENTS TO THAT CARE.

 

 
 

 

4

FIRST, AND MOST IMPORTANTLY, AIDS SHOULD BE
APPROACHED SIMILARLY TO OTHER SERIOUS AND
TERMINAL ILLNESSES. WE BELIEVE THAT IT WOULD BE
UNWISE POLICY TO SINGLE OUT ONE DISEASE FROM THE
MANY OTHERS THAT CAUSE LARGE NUMBERS OF DEATHS,
SUCH AS CANCER OR ALZHEIMERS DISEASE. NEW AND
SEPARATE PAYMENT MECHANISMS OR SEPARATE SYSTEMS
OF CARE SHOULD NOT BE SET UP TO DEAL WITH AIDS.
THE NATIONAL POLICY IN PAYING FOR AIDS SHOULD BE
ONE THAT UTILIZES ALL THE EXISTING METHODS FOR
HEALTH COVERAGE, BUILDS UPON THE STRENGTH OF OUR
CURRENT SYSTEM, AND ADDS NEW RESOURCES WHERE THEY
ARE APPROPRIATE AND NEEDED.

SECOND, PAYING AND CARING FOR AIDS PATIENTS
MUST BE A SHARED RESPONSIBILITY. BROAD SUPPORT
IS NEEDED FROM BOTH THE PRIVATE AND THE PUBLIC
SECTORS. WITHIN GOVERNMENT, RESPONSIBILITY
SHOULD BE SHARED AT ALL LEVELS, FROM THE FEDERAL
GOVERNMENT, TO STATE GOVERNMENTS, TO LOCAL
COMMUNITIES. WITHIN THE PRIVATE SECTOR,
RESPONSIBILITY MUST BE ACCEPTED NOT ONLY BY GROUP
INSURERS, BUT BY THOSE OFFERING INDIVIDUAL
COVERAGE, SELF-INSURED EMPLOYERS, CHARITIES,
CHURCHES AND PRIVATE FOUNDATIONS.

 

 
 

 

THIRD, STATES SHOULD HAVE THE FLEXIBILITY
THEY NEED TO PURSUE OPTIMAL APPROACHES FOR THEIR
RESPECTIVE RESIDENTS. BECAUSE OF EPIDEMIOLOGIC
FACTORS (SUCH AS THE VARIABILITY OF INTRAVENOUS
DRUG ABUSE), DIFFERENT STATES HAVE MARKEDLY
DIFFERENT AIDS POPULATIONS. METHODS FOR
DELIVERING AND FINANCING CARE WILL NEED TO VARY
DEPENDING UPON THESE POPULATION DIFFERENCES, AS
WELL AS UNIQUE STATE RESOURCES.

FINALLY, ALL HEALTH PROFESSIONALS HAVE AN
OBLIGATION TO CARE FOR AIDS PATIENTS ANDS THOSE
INFECTED WITH THE HIV VIRUS. CARE SHOULD NOT BE
DENIED BECAUSE AN INDIVIDUAL HAS AIDS OR HIV
INFECTION. BROAD ACCESS TO CARE CAN BE ENSURED
ONLY IF ALL HEALTH FACILITIES AND MEDICAL
PROFESSIONALS ARE WILLING TO PROVIDE CARE.

 

 
 

 

Testimony

before the

Presidential Commission on the Human

Immunodeficiency Virus Epidemic

January 15, 1988

Douglas S. Peters, Senior Vice President

Representation and Public Affairs

Blue Cross and Blue Shield Association

 
 

 

DOUGLAS S. PETERS

Doug Peters joined the Blue Cross and Blue Shield
Association as senior vice president, Representation and Public
Affairs in September, 1987 after more than 20 years of
experience in hospital administration.

Prior to joining the Association, Mr. Peters spent three
and a half years as president and chief executive officer of
the Henry Ford Hospital and as executive vice president of the
Henry Ford Health Care Corporation in Detroit, Michigan. From
May, 1977 to December, 1983, he was vice president and
executive director of Henry Ford Hospital. .

Mr. Peters has served on the board of the Michigan Hospital
Association. He has also served on various committees of the
American Hospital Association and is a fellow in the American
College of Healthcare Executives.

Before joining the Henry Ford Hospital, Mr. Peters served
as the director of the University of Nebraska Hospital and
Clinics and as an associate director of the University of
Michigan Hospitals. He also spent two years as a lieutenant in
‘che Medical Service Corps at the United States Naval Hospital
in Philadelphia.

Mr. Peters received a bachelor's of science degree from
Ohio State University in 1965 and a master's degree in Hospital
Administration from the Graduate School of Business
Administration at the University of Michigan in 1967. He and
his wife, Karen, have two children.

0712M

 

 
 

Mr. Chairman and Members of the Committee, I am Douglas S.

Peters, Senior Vice President of the Blue Cross and Blue Shield
Association. We appreciate this opportunity to offer our
perspective on some of the issues related to AIDS.

As the largest health insurer in the country serving
nearly 80 million Americans in our private business, AIDS is of
vital concern to us.

In my remarks, I will discuss some concerns, some current
activities and practices, and offer a few recommendations for
your consideration.

Our 77 Member Plans across the country have long been
known aS providers of comprehensive health insurance benefits,
often to individuals who are otherwise considered uninsurable.
We have also been extensively engaged in community education
efforts. Providing educational materials to help control the
spread of AIDS has been a major focus of Blue Cross and Blue
Shield Plans. I will comment further on these efforts.

To date, AIDS has not significantly affected our
practices. In general, Blue Cross and Blue Shield Plans do not
treat AIDS differently from any other illness. However, we are
concerned about the effect of AIDS on the health care system
and the potential problems AIDS could pose in our ability to
continue to provide comprehensive health benefits at affordable

prices.

 

 

 
 

 

There is clearly a risk to the private health insurance
system. Private health insurance relies on its ability to
accurately project the cost and utilization of health insurance
benefits. The uncertainties surrounding AIDS particularly with
regard to its potential prevalence and the costs of treatment
present special problems to the health insurance industry.

One particular problem for Blue Cross and Blue Shield
Plans is the possibility of adverse selection. Because we have
comprehensive benefits and liberal underwriting standards or
open enrollment, high risk individuals are attracted to our
products. This is what we in the insurance industry call
adverse selection. It occurs when an individual who knows he
or she is at risk for large medical expenses selects a health
insurance program with comprehensive benefits.

The consequences of adverse selection can be a group of
insured individuals having a higher concentration of poor risks
(those who have medical conditions requiring ongoing treatment)
than another group. When the insurer sets a premium for the
entire group adequate to cover the expenses of the poor risks,
the healthier individuals leave and seek coverage in groups
with, on average, better risks and consequently, lower
premiums. This movement of the better risks serves to further
increase the concentration of poor risks which, in turn, causes
premiums to increase further, thus driving out even more of the

better risks. This cycle of adverse selection, if not

 

 
 

controll:d, can spiral to the point that an insurer may not be
able to attract a sufficient number of better risks to allow
competitive pricing.

Taken to an extreme, adverse selection can compromise the
financial solvency of the insurance carrier.

To avoid this situation, many insurers engage in medical
underwriting. They try to screen applicants for pre-existing
medical conditions that result in expensive treatment costs. I
would note that the many of our Plans provide coverage to
anyone who applies, regardless of their current health status
Or pre-existing conditions. Many other Blue Cross and Blue
Shield Plans will provide coverage with minimal restrictions on
pre-existing conditions.

To date, 15 states have enacted legislation creating risk
‘pools for people who cannot obtain private health insurance.
Unfortunately, this coverage can be very expensive ranging from
25% to 100% higher than normal nongroup rates. But in states
where Blue Cross and Blue Shield does not offer open enrollment,
risk pools assure that coverage is available. In fact, Blue
Cross and Blue Shield Plans have often been the leaders in
Supporting the creation of health insurance risk pools to cover
these individuals.

I would like to turn now to discuss the coverage that
Blue Cross and Blue Shield Plans generally offer. I will limit

my remarks to those services of particular concern to AIDS

patients.

 

 

 
 

 

Plans have been able to extend ‘their current contract
administration to accommodate AIDS patients. Most Plans, for
example, make coverage available for Azidothymidine (AZT)
through their normal pharmaceutical coverage programs. Further,
most Plans offer coverage for home health care services and the
majority of Plans offer hospice benefits as well.

These benefits are of considerable value to our
subscribers with AIDS. But even more important, perhaps, has
been the increasing availability of individual benefits
management. Forty-six Plans now offer individual benefits
management, or case management, programs through which benefits
are provided on a case-by-case basis even if exceptions to the
subscriber's contractual benefit provision are required.
Through these programs Plans cover care for subscribers that
might not ordinarily be covered services.

Plan case managers work closely with the patient's
physician, hospital discharge planners, community agencies,
and, of course, the patient, to tailor a program of care best
suited to the patient's needs. These programs do not pay for
everything -- they do not finance housekeeping services and
most social services. But they do create an important link
between the insurer and the voluntary community agencies best
equipped to provide these services.

Case management also helps us to manage the cost of care
provided to our subscribers. Our ability to manage AIDS case
costs effectively will allow us to continue the practices which

make our coverage both available and affordable.

 

 
 

 

Blue Cross of Western Pennsylvania has found, for example,
that the use of medically appropriate home health and hospice
care for an AIDS patient can cut treatment costs by $400 to
$600 a day. This can translate into reduced AIDS treatment
costs of up to 50 percent.

‘Blue Shield of California has had more than 65 AIDS related
cases in its case management program (as of June 1987), which
represent 10 percent of its case management cases. Although
the Plan has not calculated the savings per case for AIDS
patients, its savings for the program overall in 1986 averaged
$4,777 per case.

My remarks have focused on Blue Cross and Blue Shield Plan
practices with respect to AIDS. Due to the difficulty of
identifying AIDS claims and difficulties in the reporting of
‘AIDS, we are unsure of the actual number of our subscribers who
have received services for AIDS. Our estimates indicate that
the number of AIDS patients among subscribers reflect national
trends generally, with the highest number of cases in New York,
California, and New Jersey. Critically, however, relatively
few AIDS patients have private health care coverage.

Jane Sisk, of the United States Congress, Office of
Technology Assessment, reports that of 7 to 65 percent of
payment for health care services rendered to AIDS is provided

by Medicaid, depending on the type of hospital; One to three

percent of financing is provided by Medicare, and 13 to 65

 

 

 
 

 

percent by private insurance. Two to _40 percent of AIDS

_patients are uninsured. Our analysis of AIDS per case costs
also produces broad ranges. Plan experience seems to vary by
state, and even by local community. Blue Shield of California,
for example, reports lifetime AIDS patient care costs to range
from $7,500 to $110,500 -- half their cases cost less than
$52,500. The average per case cost is $54,000.

Such ranges are so wide as to provide almost no guidance.
However, they do highlight an important variable -- the
uncertainty surrounding proportion of AIDS patients who have
private coverage and the proportion who will require public
services and assistance. This uncertainty must enter into our
planning and into public sector planning alike. The CDC’s data
indicates, for example, that as many as 23 percent of persons
‘with AIDS contracted the HIV virus through drug abuse practices.
These individuals may be least likely to have private coverage,
least responsive to the AIDS transmission prevention efforts
‘and most in need of costly medical and social welfare services.

Plans have been very active in their communities with
respect to awareness and educational programs about AIDS. They
are using a variety of approaches including public forums,
printed materials, video tapes, and radio announcements. At
last count, Plans had distributed more than one million

booklets, AIDS: No-Nonsense Answers, which is a 20-page report

in Q & A format.

 

 
 

 

SUMMARY AND RECOMMENDATIONS -

We share your concern about AIDS, We believe your

consideration of the following recommendations will add to more
effective resolution of the spectrum of Challenges AIDS

presents:

We would encourage you to consider ways to Support the

development and expansion of community based services.

We are supportive of and would encourage additional federal
expenditures on research dealing with AIDS. Funding could
be directed at NIH, academic institutions, and also
available for clinical trials in medical centers and

teaching hospitals.

We encourage consideration of voluntary state risk pools
which involves the participation of employers who self-fund
their benefits to make coverage available for persons of

high risk.

 
 

 

 

Date

From

Subject

To

i

DEPARTMENT OF HEALTH & HUMAN SERVICES Otfice of the Secretary

 

_ Memorandum
SEP 30 |

Deputy Assistant Secretary
Administrative and Management Services

Fire Prevention Week Activities

All HHS Employees in Southwest Complex

cad

Fire Prevention Week will be ‘¢élebrdted during the week of
October 17-21, and fire safets jSqrams will occur in the Hubert
H. Humphrey Building and the Wilbur J. Cohen Building. These
activities are presented as a service to educate and inform all
employees.

I encourage all employees to attend these events:

© WILBUR J. COHEN BUILDING EMERGENCY EVACUATION
PROCEDURES. Tuesday, October 18, 10:00 a.m. to
11:00 a.m., Cohen Auditorium. mer

© HUBERT H. HUMPHREY BUILDING EMERGENCY EVACUATION
PROCEDURES. Wednesday, October 19, 10:00 a.m. to
11:00 a.m. and 2:00 p.m. to 3:00 p.m., Great Hall,
Hubert H. Humphrey Building.

All Emergency Evacuation Monitors should attend one

of these sessions. These programs are also of general
interest to all employees. The HHH emergency alarm
system will be explained, as will evacuation procedures
and monitor responsibilities.

O HOME FIRE SAFETY -- D.C. FIRE DEPARTMENT. Thursday,
October 20, 10:00 a.m. to 11:00 a.m., Great Hall,
Hubert H. Humphrey Building.

Representatives from the D.c. Fire Department will
present a program on general fire safety. Topics will
include home fire prevention, design of an evacuation
plan, and smoke alarm placement. A short film on home
fire prevention will be shown.

I invite you to pick up some of the fire safety literature which
will be available in the Great Hall throughout the week. In
addition, please take a moment to appreciate the artistic
efforts of HHS Child Care Center kids. Their Fire Safety work
will be displayed throughout the week in the Great Hall.

1 Raff ahha

James F. Trickett

‘
é

vf