THE PRESIDENTIAL COMMISSION
on the
HUMAN IMMUNODEFICIENCY
VIRUS EPIDEMIC

Hi EARI N G O N Prevention and Education

March 1, 2, 3, 1988

 

 
 

 

August 24, 1988

TO OUR READERS:

The Presidential Commission on the HIV Epidemic held over 45
days of hearings and site visits in preparation for our final
report to the President submitted on June 27, 1988. On behalf
of the Commission, we hope you will find the contents of this
document as helpful in your endeavors as we found it valuable
in ours. We wish to thank the hundreds of witnesses and
special friends of the Commission who helped us successfully
complete these hearings. Many people generously devoted their
volunteer time in these efforts, particularly in setting up
our site visits, and we want to fully acknowledge their work.

The staff of the Presidential Commission worked around the
clock, seven days a week to prepare and coordinate the hearings
and finally to edit the transcripts, all the while keeping up
with our demanding schedule as well as their other work. In
that regard, for this Hearing on Education and Prevention, we
would like to acknowledge the special work of Robert Mathias,
Jane West, Sherry Kaiman and Cynthia Flynn, in putting together
the hearing, and Jane West and Margo Payne, in editing the
transcript so it is readable.

For the really devoted reader, further background information
on these hearings is available in the Commission files, as well
as the ‘briefing books given to all Commissioners before each
hearing. These can be obtained from the National Archives and
Records Administration, Washington, D.C. 20408.

One last note--We were only able to print these hearings due

to the gracious and tremendous courtesies extended by Secretary
Bowen's Executive Office, especially Dolores Klopfer and her
staff, Reginald Andrews, Sandra Eubanks and Phyllis Noble.

Sincerely,

yy) - a

4 f , af a 4 ‘

D x Jury Jeli if pf hha Me
f Gloria B. Smith

Polly &. Gaul
Executive Director Administrative Officer

 

 
 

 

PRESIDENTIAL COMMISSION ON THE

HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

COMMISSIONERS

ADMIRAL JAMES D. WATKINS, CHAIRMAN
UNITED STATES NAVY (RETIRED)
COLLEEN CONWAY-WELCH, Ph.D.

JOHN J. CREEDON
THERESA L. CRENSHAW, M.D.
RICHARD M. DEVOS
KRISTINE M. GEBBIE, R.N., M.N.
BURTON JAMES LEE, III, M.D.
FRANK LILLY, Ph.D.

HIS EMINENCE JOHN CARDINAL O'CONNOR
BENY J. PRIMM, M.D.
REPRESENTATIVE PENNY PULLEN
CORY SerVAAS, M.D.

WILLIAM WALSH, M.D.

o

 

 
 

 

PRESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY
VIRUS EPIDEMIC

HEARING ON PREVENTION AND EDUCATION

The Hearing was held at the
Interstate Commerce Commission Building
Hearing Room B
12TH and Constitution Avenue, N.W.
Washington, D.C.

Tuesday, March 1, 1988

COMMISSION MEMBERS PRESENT:

ADMIRAL JAMES D. WATKINS (Ret.), CHAIRMAN

JOHN J. CREEDON

THERESA L. CRENSHAW, M.D.

RICHARD M. Devos

KRISTINE M. GEBBIE, R.N., M.N.

BURTON JAMES LEE, III, M,D.

FRANK LILLY, PH.D.

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 CARDINAL 0’ CONNOR

COLLEEN CONWAY-WELCH, PH.D.

 

 
 

I-N-D-E-X .
PAGE
WELCOME
Admiral Watkins, Chairman 1
Cc. Everett Koop, M.D., SC.D., Surgeon General 2
of the United States
PANEL ONE
OVERVIEW OF THE PUBLIC HEALTH SYSTEM
Bailus Walker, Jr., Ph.D., M.P.H. President, 23

American Public Health Association; Professor,
Environmental Health and Toxicology at the School
of Public Health, State University of New York at Albany

H. Deman Scott, M.D., Executive Committee, Association
of State and Territorial Health Officials; Director
of Health, State of Rhode Island

PANEL TWO

THE ROLE OF FEDERAL, STATE AND LOCAL PUBLIC HEALTH
ORGANIZATIONS IN PREVENTION EFFORTS SURROUNDING AN EPIDEMIC

James O. Mason, M.D., Dr.P.H., Director,
Centers for Disease Control; Assistant Surgeon General

Lloyd Novick, M.D., M.P.H., Director for Community
Health, New York State Department of Health

Martin P. Wasserman, M.D., J.D., Director,
Montgomery County (Maryland) Health Department

Lonnie Edwards, M.D., Health Commissioner
Chicago Department of Health, Chicago, Illinois

PANEL THREE

LABORATORY SUPPORT FOR HIV PREVENTION SERVICES

David Hendersen, M.D., Chief
Hospital Epidemiology; National Institutes of Health

Al Saah, M.D., John Hopkins Hospital, Baltimore,
Maryland

Michael S. Ascher, M.D., Deputy Chief,
Virus Lab, Berkeley, California

Brooks Jackson, M.D. Assistant Professor

Department of Laboratory Medicine and Pathology,
University of Minnesota, Medical Director, AIDS Lab,
Minneapolis, Minnesota

26

47

50

52

56

. 83

89

92

96

 

 

 

 
 

 

I-N-D-E-X (continued)
Page

PANEL FOUR
TESTING, COUNSELING AND CONTACT NOTIFICATION AS A
PREVENTIVE MEASURE
Thomas M. Vernon, M.D., Executive Director 104
Colorado Department of Health

Jeffrey P. Davis, M.D., State Epidemiologist; Chief, 108
Section of Acute and Communicable Disease Epidemiology,
Bureau of Community Health and Prevention, Wisconsin

State Department of Health and Human Services

William C. Meyers, M.S., Health Commissioner, 111
Columbus Department of Health, Columbus, Ohio

H. Hunter Handsfield, M.D., Medical Director, 113
Seattle-King County Department of Public Health, S.T.D.
Program; Associate Professor, University of Washington
Medical School

PANEL FIVE
SEXUALLY TRANSMITTED DISEASE AND AIDS
Michael Rosenberg, M.D., M.P.H., Executive Director 141

American Social Health Association

Willard Cate, Jr., M.D., Director 143
Division of Sexually Transmitted Disease, Centers
for Disease Control

Wendy Wertheimer, Director 145
Public and Government Affairs, American Social Health
Association

 

 
 

 

PROCEEDINGS

MS. GAULT: Ladies and gentlemen, members of the
President’s Commissioner, 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. Yesterday we
completed our first business session on the Chairman’s
recommendations for the content of the Commission’s interim
report. In the interim report we address areas of intravenous
drug abuse, medical care for HIV in infected people, including
education of health care providers and research needs for new
drug and vaccine development. The full Commission will vote on
these recommendations after allowing 2 days for public comment.
At the close of THursday’s hearing, we will commence preparation
of the interim report from the entire Commission for delivery to
the President early next week.

Today, however, we are going to take up a new subject,
a subject that all experts agree is of critical important to
altering the course of this epidemic. That subject is prevention
and education. We have already laid the groundwork for an
education strategy by recognizing the educational needs of health
care providers in the interim report. These are the people from
which information about the HIV epidemic needs to come. They are
the horse that should be pulling the HIV education cart. We are
now ready to start filling that cart, as we address the
educational needs of such populations as the nation’s work force,
the unemployed, hard-to-reach youth, minorities and our
schoolchildren. During the course of this Commission’s work, we
have spent a majority of our time examining those aspects of the
nation’s response to the HIV epidemic that can best be
characterized as predominantly reactive. We have been looking at
what needs to be done after the fact.

Today and on the two days that follow, we are going to
look at that portion of the nation’s response to the epidemic
that is predominantly proactive. We will examine those
strategies that can be pursued before the event takes place,
strategies that can be effectively utilized to stop the spread of
the HIV infection. The reality today, as we are all too
painfully aware, is that there is no cure for AIDS. There is no
vaccine. During the next 3 days, the Commission will examine in
detail areas of prevention and education. We have spent
considerable time gathering 60 of the best minds in the nation to
present testimony on these critical areas.

We will examine the response of the nation’s public
health and education systems from the federal to the local level.
We will look for both model programs that can be successfully
replicated and for the obstacles to effective prevention and
education efforts to determine what we can do to eliminate them.

 

 

 
 

 

During these hearings, we will hear witnesses speak:
about laboratory support for HIV prevention services and the use
of contact notification of those who have had sexual contact with
an infected individual as a preventive measure.

The issues of testing reappear consistently as the
epidemic is examined in detail by-the Commission, but it needs to
be clearly understood that this is not the only context in which
we will be addressing testing. Two weeks from now in Nashville,
Tennessee, we will be holding additional hearings on testing nd
the related issues of discrimination that so often surround those
who test positive for the virus. We could not, however, fully
examine the prevention efforts of the public health system
without including contact notification here.

Other issues that will be addressed during the next 3
days include the relationship between other forms of sexually-
transmitted disease and the human immunodeficiency virus,
appropriate strategies for reaching minority populations and
hard-to-reach youth, as well as the role that the media can play
in education of the population at large and the educational
efforts of community-based organizations those groups who have
been at the frontlines of the epidemic since the beginning. We
will, also, hear testimony from educators who will present their
views as to what type of information is appropriate to provide
for our nation’s schoolchildren and what is the best way to
deliver it. These children are tomorrow’s adults, and they
quite literally represent the future of our nation, and by
giving them the right kind of education about AIDS now, we can
help their generation avoid the tragedy we are witnessing today.

Today, we will hear testimony regarding the prevention
efforts of the nation’s public health system. I use the term
"prevention" here with its broad definition to include a variety
of strategies to stop the spread of HIV.

Tomorrow and Thursday, we will hear testimony on that
aspect of prevention, the education of our nation’s adult and
school-age population that has such great potential as a weapon
against this disease.

We have got a full agenda, and I would like to begin
now. So, I am pleased to introduce our first witness this
morning and welcome him to the Commission, Dr. C. Everett Koop,
Surgeon General of the United States.

Dr. Koop has been in the business of healing for many
years. Before joining the Federal Government in 1981, he was a
pioneering pediatric surgeon at the University of Pennsylvania in
Philadelphia. Dr. Koop has been a courageous and visible leader
in the areas of prevention and education, and I am delighted that
the Commission has this opportunity to hear his views directly.

2

 

 

 
 

 

Thank you for being here this morning, Dr. Koop, and please
begin.

DR. KOOP: Thank you, Admiral. I welcome this
opportunity to appear before you and discuss prevention and
education issues concerning AIDS and the HIV infection. My
remarks are brief, and I will rely on your questions to bring out
those things that you would like to hear from me. First, I would
like to congratulate you and the members of the Commission for
the manner in which you are exercising your critical role in the
national effort to contain the epidemic.

Since October 1986, when I released the Surgeon
General’s Report on AIDS, this country has done much that we can
be proud of. The news media, print and electronic, have rendered
tremendous service in getting out clear information to the
public. The entertainment media have, also, put out the AIDS
message in ways that can change behavior and save lives. The
Administration and the Congress have given high priority to the
greatly increased resources for the fight against AIDS and HIV
infection. The research and the health care communities are
working hard on these problems. It is the highest level of
activity and commitment to a public health problem that I have
seen in my lifetime. There is an increasing public awareness of
this health issue, and a strong desire to take personal and
public action, but there is much more to be done and many issues
which we must enjoin if we are to contain the spread of HIV.

Let me share a few issues of special concern. I am
concerned about needle sharing among IV drug abusers. A recent
National Institute on Drug Abuse study of heroin addicts admitted
to Methadone treatment programs indicated that 93 percent had
shared needles (most in the last year) and 26 percent reported
daily needle sharing: yet only 14 percent reported the use of
condoms.

These figures have alarming implications for both IV
drug users and their sexual partners, not to mention the children
that are born of such unions. It is currently estimated that
there are about 1.1 million intravenous drug addicts in this
country. The solutions are not readily obvious. IV drug abusers
lead disjointed, fragmented lives, and many of them are
functionally illiterate. It is critical that we find the right |
combination of strategies to get people off drugs and away from
contaminated needles.

Additional drug treatment capacity is needed, but
simply providing more dollars does not immediately translate into
additional slots available for addicts. There needs to be
increased sharing of expertise and programmatic experience
between federal, state and local governments working in close
conjunction with community organizations and the professional

3

 

 
 

 

provider community. Our only hope lies in the solutions that
come from this type of collaborative activity.

I continue to be concerned about the spread of HIV
among heterosexuals. I am outraged at recent newspaper and
magazine articles stating that there is no danger of heterosexual
transmission from "normal vaginal intercourse." Although
homosexual sex and IV drug abuse are the principal modes by which
most cases are transmitted, it is just not true that there is no
danger from normal vaginal intercourse. What is unknown is the
level of that danger. There is always danger wherever people
engage in casual sex. To date there have been about 2100 cases
of reported heterosexual transmission out of something over
53,000 adult cases of AIDS. That is about 4 percent. If you
exclude the foreign born, the figure drops to 2.3 percent, nd
most of those cases are the sexual partners of IV dug abusers.

The Centers for Disease Control estimates that by
1991, heterosexual transmission will account for 5 percent of the
total adult caseload; that is 5 percent of about 300,000 cases.
We know from the infected spouses of persons with hemophilia that
HIV can be spread through normal vaginal intercourse. What
concerns me is the potential for more rapid spread of HIV
infection into the general population.

This concern about a more rapid spread is reflected in
the reported increase of infectious syphilis cases by
approximately 30 percent just from 1986 to 1987. The greatest
increases were in Florida, New York and California, areas of high
HIV incidence. Relative increases were greatest for females and
heterosexual males of all racial and ethnic backgrounds.

I want to take this opportunity, sir, to add a special
word of praise for those who dedicate themselves to the
compassionate care of people with AIDS and ARC -- physicians,
nurses, teaches, social workers and others, especially in areas
with the highest concentration of AIDS cases -- specifically the
cities of New York, San Francisco and Los Angeles. However, even
there and in many other cities across this country, we are seeing
a number of instances in which health professionals refuse not
only to treat persons with AIDS but turn away patients alleged to
be identified with high-risk behavior: homosexual and bisexual
sex and intravenous drug abuse.

The decision by some health professionals to deny care
to homosexuals, IV drug abusers or others suspected of carrying
the virus is historically uncharacteristic and unworthy of anyone
in the health or social service professions. For government, for
the professions involved and for Americans generally, this kind
of behavior even by a small number of health professionals must
be a cause for grave concern.

 

 
 

EE

Of course, the reasons most often given are that AIDS
is contagious and fatal and "I don’t want to get it." But the
plain fact is that the risk of contracting HIV from an infected
patient is extremely small and virtually always preventable.

Of the nearly 7 million Americans in health
professions, we know that fewer than one dozen have become
infected with the virus while doing their jobs. And in most of
those cases, HIV exposure could have been prevented if the
persons had followed the workplace guidelines published by the
Centers for Disease Control several years ago.

I cannot overemphasize it is essential that all workers
be required by their employers, to follow the CDC guidelines, and
that they be provided with protective material where necessary.

In 1988, the Federal Government will spend a total of
$1.465 billion on AIDS, including $375 million through Medicaid
on AIDS treatment, $931 million on AIDS research and education;
and an additional $159 million on treatment and prevention
efforts. THe President’s budget for Fiscal Year 1989 includes
$2.026 billion for these efforts, a 38 percent increase over
1988.

In addition, there are social costs, such as human
capital, and these are often translated as lost wages and
productivity. But even if you put to one side these indirect
social costs, we still face in the year 1991, a national bill of
3 to 5 billion dollars for the cost of AIDS-related care. Both
inpatient and outpatient, hospital and hospice. These 1991 costs
will result from the care of an estimated 145,000 persons with
AIDS who will be in various stages of a terminal illness.
Clearly, we must do a great deal more to develop alternative,
less costly, but highly effective ways to care for AIDS patients.
We need to do this in light of the specific AIDS-related diseases
and conditions we know about and the different stages through
which they progress. I believe the challenge today is to give
the country’ a way of caring for AIDS patients while preventing an
escalation of costs.

 

I would also like to make the critical point that one
of the complexities of AIDS is that it is an epidemic
characterized by related issues, a number of them social, such as
homosexuality and IV drug abuse. We must develop our strategies
to meet the specific dimension of each issue related to the
epidemic, if we are to contain HIV infection in this country.

In my remarks I have limited myself to just a few
critical issues. There are many others. They must all be
addressed if we are to interrupt the chain of transmission of HIV
and spare our people and the people of the world the pain, the
suffering and the deaths from AIDS. We need to stop it in a way

5

 

 

 
 

 

that is effective yet consistent with American law and tradition.
We can do it by making certain that the American people have a
clear understanding of the threat posed to them by this disease
and that they are ready to fight back with the best weapon
available to them: their intelligent choices about personal
behavior.

As a Presidential Commission with high public
visibility, you have the ability to market good disease
prevention, good science and good health care practices to the
public.

The American public look to your final report for
leadership vision of those things we must do to contain the
epidemic. In this way, I believe you will have served the very
best interests of the American people. Thank you.

CHAIRMAN WATKINS: Thank you very much, Dr. Koop.
I would like to commence the questioning this morning from my
left, your right. Mr. John Creedon.

MR. CREEDON: Thank you, Dr. Koop. I guess we have
been hearing for quite some time now that what we need to do is
prevent the spread of the disease, and the main vehicle for doing
that now is education. It seems to me there has been a lot of
education over the past 6 to 9 months -- television programs,
television advertisements, newspaper articles, magazine articles,
efforts made in the schools to put curriculum in. What else
needs to be done, as you see it, specifically? What specifics
can we recommend as a Commission to improve the education of the
different groups? It seems to me there is a high level of
education about the problem in the homosexual community, less so
in the IV drug user community, a community that is much more
difficult to reach. What specifically do you see as something
that we could recommend?

DR. KOOP: Admiral Watkins mentioned some of the things
that are on my mind, in his introductory remarks. I thing the
first thing is to recognize the people you are trying to reach
and to develop the message in such a way that it reaches target
groups.

I think that messages have to be targeted to the
homosexual, to the heterosexual and to the IV drug abuser. From
an AIDS point of view, I think we have three different
challenges. The message has to be different to those who are
college age and above, and certainly different for those who are
pre-adolescent. I would like to take a moment to talk about
that. If we had proper value-laden, responsible education about
human sexuality undertaken in pre-adolescent years, which is the
primary responsibility of parents, with parent reinforcing
parent, parents being reinforced by schools, schools being

6

 

 

 
 

 

 

reinforced by churches and community organizations, I think it is
quite possible to raise a generation of adolescents down the road
that would be far less sexually active than the present one.

That brings us to the teenagers of today. Many people are
discouraged about teenagers because some of them are so sexually
active. However, those who have remained abstinent and are
looking forward to monogamous relationships need to have that
decision reinforced in every place that we can. I think it is
also realistic to understand that sexually-active teenagers are
unlikely to reverse their pattern and go backward. Therefore,
the prevention for them has to be our third line of defense,
which is to teach them about the protection of themselves and
others through the use of condoms and spermicides.

Now, I know that that goes against the grain of many
people in this country, but we cannot abandon more than half of
our teenagers because they are sexually active. We have to
reach them where they are and tell them about those things that
they have to do.

My greatest concern has already been well enunciated in
Admiral Watkins’ report last week. That is, the epidemic is
spreading most in the IV drug abusers, and they are the hardest .
people to reach. I have made it a point to work with IV drug
abusers in Newark and New York. I traveled to Scotland late last
year to look at the clean needle experiments in Glasgow and
Edinburgh, and we have problems that they don’t face at all. If
you talk to Edinburgh drug addicts, they are all of one culture.
They are Scottish. They live in housing developments. Many of
them are married and have children, and they are all literate.
They read, they understand, and they follow directions. You try
that in New York City where you are dealing with a fragmented
individual who has had very few choices to make in life. Those
he has made have been poor; he is now addicted to a very
difficult drug habit to kick. He cannot read and his life is so
fragmented he tends not to congregate in a place where you can
show him a video tape or talk to hin.

I think one of the most effective things that can be
done with these people which is high labor intensive, is to have
former drug addicts talk with them one on one and convince them
about the problems of needle sharing. We have had some
successful experience with this in some parts of the country.

The reason for its success is because somebody who understands
their problem and kicked their drug habit is now able to tell
them what the challenge is of this epidemic. That is hard to do.
Also, some of the things that were mentioned in the preventive
efforts of Admiral Watkins’ paper last week are very difficult

to bring about in communities. Although everybody is in favor of
getting rid of drug abuse, nobody wants to be the person involved
with doing it. Money is also terribly important. But as you
know, as well as I, a lost of the money that has been already

7

 

 
 

 

appropriated to the states has not been used because they cannot
find the places to put the drug abuse clinics. They cannot find
the counselors with skills to be able to talk to these people one
on one, and counseling is very much a part of any Methadone
treatment. Those are the problems that I see.

In closing, I would say that the one thing that I wish
I saw here, that I saw abroad, is visible posters in those
communities most likely to reach the illiterate which speak to
them in sign language. I don’t see those here. I do see them in
Liverpool, and I see them in Edinburgh, and I see them on the
Continent.

MR. CREEDON: Thank you.
CHAIRMAN WATKINS: Ms. Gebbie?

MRS. GEBBIE: One of the issues within any public
health effort in this country is the pluralism of the system,
and that is local government, state government, the Federal
Government, each of them not necessarily working for the same
bosses but trying to work together. That sometimes appears
complicated to people at the state and local levels when it
appears as if the various components of the federal public health
system aren’t pulling together or all in the same direction.
Could you comment a little bit on that process of getting the
elements of the Public Health Service coordinated and your sense
of direction and the effectiveness of the coordinating process
that is going on today?

DR. KOOP: There are two mechanisms already at work.
One is the Association of State and Territorial Health Officers,
a remarkably fine group of people who do work well together and
who work well in tandem with the Federal Government. In
addition, the Public Health Service divides the country into ten
regions. Each has a regional health administrator who is part of
a regional structure that carries on much more inclusive
activities than health. These two mechanisms already are at
work. What I think is needed, and what I have been calling for,
for over a year, from every podium I have had the privilege of
using in this country is the need for dialogue of the most
statesmanlike variety. We need to bring federal, state and
certain municipal people together. There is no doubt that the
burden of AIDs is being borned by municipalities. They can lean
only so long upon state help, and the states have to lean
eventually on federal help. The problems that these people could
discuss, in addition to prevention, are how much it is going to
cost? Who is going to pay what part of it. Where does insurance
fit in? And then, as I mentioned in my prepared statement, what
is an alternate cheaper method, but compassionate way, of dealing
with terminally ill patients?

 

 
 

 

MRS. GEBBIE: Could you carry that a little further
within the federal system? I really would appreciate some
comment on the dialogue within the various components of the
federal Public Health Service and whether you are satisfied with
the coordination that is in place there or are there some
additional things we should be recommending?

DR. KOOP: I am satisfied with it. Any bureaucracy is
cumbersome, and AIDS is getting to be such a problem its own
little bureaucracy is becoming cumberson. The Public Health
Service exists within the Department of Health and Human
Services. It is composed of five major agencies to which the
Indian Health Service has just been added. The five you are
familiar with are the Centers for Disease COntrol, National
Institutes of Health, Food and Drug Administration, ADAMHA and
finally the Health Resources and Services Administration. Each
of the components of the Public Health Service has representation
on an Executive Task Force on AIDS which meets for 2 hours on
alternate Mondays. Reports from various pre-established
committees that have to do with every phase of AIDS are
presented at these meetings. In addition to that, there is an
HHS interagency task force which meets weekly. This task force
has representatives from all components of HHS such as the
General Counsel’s Office, HCFA, Social Security Administration
and so on.

So I think there is a good communication network in
place within the Public Health Service and within HHS and that
it is being used actively and appropriately.

CHAIRMAN WATKINS: Dr. Lilly.

DR. LILLY: Dr. Koop, I think you made a brilliant
presentation on this point. I want to go just a little bit
further. Somehow or other are we in this country, as you
suggest, thinking that if we can just start now teaching our kid
to live properly that another 50 years from now there will be no
extramarital sex whatsoever; if we can just now start working on
our kids to teach them not to use drugs, 50 years from now there
will be no drug abuse of any kind? I am not sure I believe that,
at least in those extreme terms I have mentioned. I am quite
sure that we have a problem now and that the plans for raising a
future generation are not addressing the problem now and I am
very worried about that. I have no quarrel with the future
plans. I think they are wonderful. We must do those. Those are
very high priority activities. I think that in a sense, since
the problems of trying to deal with the present drug abusers,
with the present people who still practice sex, that in a sense
we are abandoning those people. We don’t have enough courage to
do something for them, and I am wondering if you can tell us, do
you think that plans for things like eliminating needle sharing
by perhaps even going to the extremes of eliminating the laws

9

 

 
 

 

against possession of injection equipment, do you think that
things like that are feasible or desirable? Do we need more
research on those issues? Do we need to research the business of
needle exchange for current IV drug abusers who cannot get into
treatment programs and who will not be able to get into treatment
programs for months down the road? Do you think that sex
education for how to behave now for people who, as you say, are
not going to go back and change their behavior, is called for?

We need research on the effectiveness of trying to give a simple
explanation of how to use a condom? Do we need research or do we
know now what to do there?

DR. KOOP: That was a lot of questions, sir. I never
meant to imply by my enthusiasm for teaching youngsters about
their own sexuality that you are going to eliminate sexual
problems in the next generation of teenagers --

DR. LILLY: I was aware that I was exaggerating your --

DR. KOOP: -- any more than I think you can totally
eliminate smoking, no matter how hard you try. You can, however
make tremendous inroads in it, and that is what I was trying to
get across. I think we need research in many things that we
don’t know about. One is human behavior. A part of that is
already being addressed by the mental health division of ADAMHA.
Some things ought to be coming down the road in a couple of years
that will help us, but that is still a long time away. Whenever
you get into the problem of drug abuse, you run into tremendous
problems just in having people willing to consider alternatives.
There was a very brilliant editorial in the Post recently about
the free distribution of drugs. That gets rid of everything in
the way of the supplier and knocks the props out of immoral
governments in South America. However, I don’t think that you
are ever going to sell that idea to the American people.

Look at the difficulty in getting them just to discuss
the possibility of clean needles, let alone to not make it a
crime.

I would like to tell you a couple of anecdotes that I
think are worthwhile. The Scottish experience can teach us many
things. The Scottish Department of Health is under the UK, but
is rather independent. The Health Department decided to try a
clean needle experiment in three cities. All of the cities have
a pretty homogeneous cultural and ethnic composition and are
within one-hour driving distance of each other. The cities were
Dundee, Glasgow and Edinburgh; the plan was for addicts to
exchange their dirty paraphernalia for clean equipment.

Now, in Dundee, the program never got off the ground
because the physicians in that town said, "It is immoral to aid
and abet an illegal practice. So, we will not take part in it,"

10

 

 
 

 

and it never started. In Glasgow, the drug addicts said, "It is
a great idea. We have heard you. We will do it, but we are not
going to be labeled as IV drug abusers in the public eye. So, we
will buy our own equipment in the pharmacy." You can do that in
Scotland. You cannot do it here. In Edinburgh they lined up in
queues in front of the dispensing office like they were getting
on a bus. They went in one door, and out the other with their
stuff, and listened to the message. The great difference between
that experience and ours is literacy and illiteracy.

In response to the questions of transferring that kind
of information to our country, I think it is hazardous. I am
very impressed with what was done in Amsterdam, but that is an
entirely different drug population than you find in Newark or New
York or the District of Columbia or in Miami. One has to be
extraordinarily careful in not stating a program until you have
tried it out in your own ethnic backyard to see how it works. It
must be pilot-tested, well-monitored and evaluated before you
say, "This is what we should do." One of my great concerns about
the New York experiment is where they find their volunteers to go
into the free needle program. I don’t think you should approach
a person waiting in line for Methadone treatment. That person
_has already made the commitment to kick the habit, and is willing
to go into a program. To approach that person and say, "Hey, I
have got something neat for you, some clean needles. You can go
back to what you did before, and you won’t get AIDS." I think
there is a certain immoral twist to that.

I don’t think that I am ina position, sir, to have the
knowledge to tackle some of those other things you mentioned
about taking this problem out of the criminal justice system. I
would say one thing in conclusion. I don’t think many people
realize the reason that the United Kingdom can go into a clean
needle program and can deal with things apparently much more
quickly and efficiently than we can is based upon two separate
concepts about drug abuse. The UK has always dealt with drug
abuse as a health problem that had to be dealt with by health
people. We have always dealt with drug abuse in the criminal
justice system, and we in health are Johnny come latelies to a
well-engrained system, and it is going to take a long time before
we are able to mesh our objectives and our goals.

DR. LILLY: May I just ask one very simple
straightforward question? If the possession of injection
equipment were simply to be legalized, do you think that
significant numbers of people who would otherwise not have taken
IV drugs would do so?

DR. KOOP: I rather doubt it, sir. I have talked at
great length with the Minister of Health of the Netherlands about
this. Their great concern was because they have so many
itinerant drug abusers in Amsterdam that if they made free

11

 

 

 
 

needles available to everybody, a lot of people would take up the
habit. They found that was not the case. They did not do that.

DR. LILLY: I wasn’t thinking of free needles, but
simply making it legal to buy them in the drug store.

DR. KOOP: My answer is still good because if they
don’t do it with free needles, they won’t do it with the kind
they buy.

CHAIRMAN WATKINS: Ms. Pullen.

MS. PULLEN: What do you think is the appropriate form
and message of AIDS education to first graders?

DR. KOOP: I think first graders are told answers to
their questions. Toddlers begin to ask questions about
themselves, and the questions are the same until they are 6.
There are only two: Where do I come from? Why do I look
different than my brother or sister? I think those can be
answered very frankly by parents without telling children more
than they want to know.

I think that you start a first grader with an
understanding of his own body. They need to understand it as
something that is marvelously made, that it needs to be
respected, and that other people have bodies like that for which
they should have great respect. You can play games with kids at
that age. There is one that I think is worth mentioning. It is
a game played by youngsters in kindergarten. A teacher
designates five children to carry out the roles of a momny, a
daddy, a baby, a doctor and a nurse. This game is played just
before dismissal with the idea that children will go home filled
with their subject and tell their parents. The parents can then
add their ethical, moral or religious perspectives.

The game that they play has to do with the birth of a
baby. Many kindergartens have a plastic tunnel through which
kids run and play. On the occasion of this game, it is called
the birth canal. Mommy and daddy put a baby in one end of the
birth canal, and the doctor and nurse take it out at the other
end. The doctor and the nurse give the baby a sex and a weight,
andthe mommy and the daddy give the baby a name. Everybody has a
good time, and they go home.

The point is, that when they get into the third grade
and begin to learn some anatomy, and are talking about parts of
the body in medical terms and they come to a new word, such as
vagina, it will not be something frightening or dirty or
threatening to them. It won’t be because they say, "Gee, I know
what that is, that is the birth canal. Remember, we walked
through it when we were in kindergarten."

12

 

 
 

 

MS. PULLEN: What do you think is appropriate AIDS
education for third graders?

DR. KOOP: Third graders? Talking about parts of their
anatomy. However, no matter what you do about teaching anatomy
in the third grade and about reproduction in the fourth and fifth
grade, you always have to do it, as mentioned earlier, with an
emphasis on respect for one’s own body and other people’s bodies.
You talk about relationships between the sexes in the family
context and in the context of loving, kind, caring and
considerate relationships.

MS. PULLEN: What about the sixth grade?

DR. KOOP: By the time a child gets to the sixth grade,
the child is 12 years old. What you say is going to be old hat
because the child has already heard it many, many places and has
read about it in every magazine article which glorifies sex. If
you aren’t sexy, you don’t make it in this country according to
advertising. In addition, the child has seem problems of human
relationships depicted on television. Studies done on this in
our own department, have revealed that a child in the sixth grade
gets to see sexual intercourse depicted or talked about or
mentioned by innuendo about 10 or 12 times in the course of a day
-- and that is in relatively modest places like Michigan.
Therefore, we are hiding our heads in the sand, if we don’t
realize that our children have been exposed to a kind of sex
education to which we wish they weren’t exposed. My concept is
that if you can counterbalance that with family input and
responsible understanding of their own sexuality, you might be
able to blunt some of those things you would rather not have them
know.

MS. PULLEN: Do you have any concept of AIDS education
in terms of a general more broad context of health and wellness
and personal responsibility or is it just about parts of the
body?

DR. KOOP: No, everything that I talk about in
reference to health from a public health point of view is to
maintain wellness, and that is wellness not only of body but of
mind. Mental hygiene is tied into all the things which you are
talking about. It is not specifically just to tell people,
"Don’t do this, and you won’t catch that," but it is built into
an entire concept of wellness and how people can stay well
through personal responsibility. Being as old fashioned as I an,
I build that into family context that have to do with love,
consideration and marriage.

MS. PULLEN: What are the public health strategies
that should be used in the face of this epidemic, other than

13

w

 

 
 

 

education in public schools and posters on subways and that sort
of education program?

DR. KOOP: We have the obligation, which I think we are
satisfying, of providing educators with everything that they have
to know about the problems of the epidemic of AIDS, or the
transmission of syphilis, or hepatitis, or anything else. We are
not educators. We don’t claim to be experts on that matter. We
do, however, have the obligation to provide pedagogues with the
information so they can use their skills to turn the information
into the proper type of teaching approaches for different ages.

CHAIRMAN WATKINS: Dr. Lee.

DR. LEE: Dr. Koop, two broader questions. First of
all, much of our task has been trying to unravel bureaucratic
problems for the agencies, trying to speed things up in many
different ways. I won’t delineate all of the problems. You know
them. Why, given the percentage of the budget of the health
industry in the United States and the magnitude of your job.
isn’t the Surgeon General a member of the Cabinet? Why isn’t he
split off from Health and Human Services? Do we need that
additional bureaucracy on top of you?

DR. KOOP: Nobody every asked me that question before.
The Surgeon General has never been the same in any two successive
4-year periods for many, many years. I have been a more visible
Surgeon General than most people remember for specific reasons.
I will go backward to show you why. My predecessor, Dr. Julius
Richmond, had two impossible jobs at the same time, Surgeon
General and Assistant Secretary for Health. I don’t know how you
could do either one of those well, if you had the other over your
shoulder. There was no Surgeon General for 8 years preceding
Dr. Richmond. There was an Acting Surgeon General. This was
during a time when certain parts of government were trying to get
rid of the Corps whose uniforms I wear.

Before that time, the focus of the Surgeon General was
much narrower, and that is decided upon by whomever happens to be
the Secretary of Health. Nobody has had the freedom that I have
had since about 1966, and I have been in that position for a
number of reasons. First, it took a long time for me to be
confirmed. Therefore, by the time I was confirmed, it was
November of the first year of this President’s Administration,
and people sort of forgot I was still waiting in the wings.
Plus, nobody told me what my job was. So I did what Secretary
Schweiker said to do. He said, “If you see any balls out there
that you want to pick up, do so and run with them," and I did.

Second, I am the kind of a person who is ina sense a
poor loser. If I undertake a problem, I try to wring it dry.

14

 

 
 

 

Third, I happened to be standing on the right street
corner when AIDS came along. When the President asked me to do
an AIDS report to the American people, I became the spokesman
almost overnight.

That is far and above what most Surgeon Generals do. I
am fond of saying that the Surgeon General, by law is mandated to
do only one thing, inform the public of those things they can do
to promote good health an tell them what they can do to prevent
disease. That is the only mandate I have from Congress, except
to be at certain places at certain times as the Surgeon General.

I think that it would be great to have a Surgeon
General who was freed from any kind of political duress who could
be, in a sense, an apolitical health officer who stuck to that
job of communication. I think it is a very important role.
People appreciate what I am doing because I have not politicized
the health issues of the country, and I have tried to do the job
with integrity.

I don’t see that a person in that type of position
should ever be on the Cabinet. There is already a member of the
Cabinet who is given the responsibility of health and human
services. If you want to talk some time about whether that job
should be divided in half with a Secretary for Health, and a
Secretary of Human Services, I have some opinions on that.

DR. LEE: That was my question, but I won’t press you
further. I will defer my second question in the interests of
time.

CHAIRMAN WATKINS: Dr. Koop, it is 10 minutes until 10.
We don’t want to impose on your time beyond the scheduled hour,
On the other hand, I think that from the Commissioners’ point of
view, we would like to continue with the questioning, certainly
get all the Commissioners in, if your time permits. So, could
you give us some idea of how much time you can spend with us?

DR. KOOP: If I don’t get in the car by quarter after
10, I am in trouble the rest of the day.

CHAIRMAN WATKINS: Okay, we will only go to 14 minutes
after 10 then, and I would like to shift all the way to the right
then with Mr. DeVos.

MR. DEVOS: I respect what you are saying and what you
are doing. I guess my concern in this whole problem, Dr. Koop,
is that we have vehicles for the schools, and we have vehicles
for reaching children, for their family involvement. Our whole
problem is with the other 10 percent. We don’t have families
that dropped out of schools at early ages, and at Ford Hospital
in Detroit, you know, they said, "You had better get them by the

15

 

 
 

 

third grade or they won’t be around by the fifth grade anyway."
It was staggering disappointment to find that the schools just
aren’t reaching the ones who are the problem area, and I guess I
am looking for a methodology to reach those, and we are
struggling with it together. Your insights on all of that are
most helpful.

DR. KOOP: I struggle with those things, too, Mr.
Devos. I have said in reference to the household mailing, which
has gathered so much publicity and impetus, that the real people
we are trying to reach don’t have mailboxes.

MR. DEVOS: We just have to keep finding them, keep
looking, I guess.

CHAIRMAN WATKINS: Dr. Primn.

DR. PRIMM: Surgeon General Koop, you noted that the
CDC predicts that in 1991 5 percent of the diagnosed cases of
AIDS will be among heterosexuals, and I wonder if you could
comment on that in view of the fact that there is an 11 to 1
ratio when comparing white heterosexual cases with black
heterosexual cases. Aren’t you alarmed about that? Has the
Public Health Service done anything to focus on that issues?
and could you give me an estimate of the number of blacks and
Hispanics and unknowns that will be so affected in 1991?

I have another question. It has been mentioned in the
media that you had suggested testing college students for the
presence of the antibody to the HIV. Would you comment on that
for the Commission?

DR. KOOP: Yes, sir. In reference to the
disproportionate number of AIDS patients in certain minorities, I
have been trying to address this as a spokesman for public
health for a year and a half by calling attention to the fact
that whereas blacks make up about 12 percent of our population,
they make up 24 percent of our AIDS patients. Hispanics or
Latinos make up 6 percent of our population but 14 percent of our
AIDS patients. you could break that down into other groups like
black and white homosexuals and the babies born to mothers who
are HIV positive. My point in doing this is to call for a
response from the black and Hispanic communities with whom I have
worked to the best of my ability. I traveled to Boston several
nights ago and spent time with some prostitutes and some former
IV drug abusers who are HIV positive. All were black or Latin.
We were trying to find ways that we could get the message out to
those who could prevent the spread of this disease by changes in
personal behavior.

In my days in Philadelphia as a pediatric surgeon when
I wanted to get a message across to the black community that
didn’t seem to be absorbed, I went to the clergymen, and they

16

 

 
fe

were marvelous. For something like immunization of children,
they said it, and it happened. They are a little reluctant to
get involved in the problems with AIDS. Everything that the
public does or thinks about AIDS is affected by three overlying
elements of this problem. One, in spite of all we know about it,
it is still very much of a mystery. Two, it has 100 percent
fatality. Those two things make people uneasy. Three, and most
importantly, people get AIDS by doing things that most people
don’t do and don’t approve of. Therefore, black clergymen
hesitate to get down to the eyeball-to-eyeball situation with IV
drug abusers and homosexuals. I think we have got to overcome
that. I think we need black doctors, Hispanic doctors,
entertainers, sports figures (especially those who are role
models for your people) to pick up this effort and do something
with it.

As far as my talk about testing at colleges, that has
been greatly misinterpreted and overblown. I started this
discussion back in the summer of 1987, when we were trying to get
a handle on the prevalence of HIV in certain groups of the
populace. We talk about heterosexual transmission. We talk
about sexual promiscuity in college people. One of the things
that we thought it would be a great thing to do is have an AIDS
awareness day on an urban campus of a major university, say 30 to
35 thousand students, and have so much hype that everybody joined
in. In a sense those who didn’t want to be tested would be
embarrassed into being tested, totally anonymous. It has nothing
to do with the health of individuals but to help us answer
questions that you. ask, such as what is the prevalence of HIV in
college people. It was a purely public health gimmick to get an
answer.

 

DR. PRIMM: My question was more on the prediction of
the number of black heterosexuals in 1991. If you predict that 5
percent of the total number of cases in 1991 are going to be
heterosexual cases, I would think then if there is an 11 to 1
ratio between blacks and whites now, that in 1991, that number is
going to be even more enormous.

DR. KOOP: I would agree with that.

DR. PRIMM: Unless we and the Public Health Service, me
in my position here on the Commission, me in my position
privately in New York and everywhere I go to speak, if we don’t
speak out about that, we will not be prepared. I suggested that
to you so as to try to convey a message that we need to prepare
whatever health delivery system there is for this onslaught of
cases and to, like you say, involve the clergy, sports figures,
celebrities or whomever else. I just need that being said from
your perch.

17

 
 

DR. KOOP: I have said it over and over again from my
perch, sir, but I have gone one step further. I made allusion in
my prepared remarks to the fact that we would be spending between
3 and 5 billion dollars in 1991, for only 145,000 people. Twice
that many die every year from smoking which is still a major
public health problem. This is our greatest challenge. But the
thing that I have been concerned about, sir, as I said in my
report to the public in October 1986, is that the day will come
when this epidemic will impact upon everybody in this country in
some way, certainly as taxpayers. New York City is going to feel
it this spring, when the beds run out. My great concern is that
so many of the civil rights that blacks and Latinos have
struggled so hard with some of us to obtain are going to be
threatened when people say, "Why am I not getting the health care
that I want for my child?" and someone says, "Because those beds
are all filled with people of minority groups who have AIDS," and
I think that is what you and I are both concerned about.

DR. PRIMM: Yes, we are. Thank you so much, Surgeon
General Koop.

CHAIRMAN WATKINS: Dr. Walsh.

DR. WALSH: Dr. Koop, before I pose my question, I
certainly want to commend you for what you have done in regard to
AIDS because as you well know, when you step out front, you get
the heat with the praise, and you certainly have taken both in
stride. I think that in addition to bringing AIDS to the
attention of the American public your forthrightness, has made
some of our foreign colleagues in Western Europe be much more
forthright in dealing with AIDS. This is a tribute, I think, to
your own tenacity in facing this problem.

DR. KOOP: Thank you.

DR. WALSH: I want to commend you for what you have
done, not only here but for all over the world. The thing that
distresses me that I wanted to ask you about is that education
for the next decade is probably the only and best weapon that we
have. There have been discussions and arguments about the best
ways of education. Two years ago, mailing out the report that
you referred to, would have been effective for awareness. Today
it is not going to reach the people, as you say, that it is most
important to. We are down into a resource allocation situation
in combatting this disease, and we have responsibility of making
some recommendations.

What is really, in your opinion, that status of the
preventive educational program that is going on in the United
States? I am not talking about what we should be doing or what
we may be doing, but if you had to grade the preventive
educational program -- it seems to me we are not doing well

18

 
 

enough. I am not sure why. It is not because you haven’t tried.
What can we do to make it better?

DR. KOOP: Let me back up to where you said that you
don’t know why. A month ago, as many of you know, I attended the
Summit of Ministers of Health of 193 countries. Over and over
again I got the same criticism from people in Western Europe - we
weren’t doing enough, and we weren’t doing it right.

I heard that all of my surgical life from those same
people. I would like to call the attention of the Commission to
the fact that it is extraordinarily difficult to reach 240
million people.in the melting pot of the world with all of the
problems that our freedoms have brought us. You compare that to
a Scandinavian country who population is as big as the city of
Philadelphia where I practiced surgery - they all speak the same
language; they all go to the same church; they are relatively
docile people. But, they have also been exposed to all kinds of
freedoms in sexual matters for several decades. It is a very
short jump for them to go to the kind of education that many
people object to in this country.

I don’t know the answer to your question. If I were to
give us a grade on where we are today, I would have to give us
about, on the basis of 10 at least 75 to 80 percent. We are at
the present time following the mandate of Congress and preparing
a household mailing for the people of America. If you want a
real job sometime, try to get everything you would like to say
into something that will fit through a letter slot and not be
criticized by half the country for what you said and the other
half for what you didn’t say. By the end of June you will be
able to make that judgment for yourself.

DR. WALSH: Now, in measuring the success or failure of
it, you alluded to the increase, for example, in venereal
disease, syphilis and so on. We have been hearing the projection
of seropositivity in the United States of 1-1/2 to. 2 million and
I realize it is difficult without mandatory testing and that type
of thing, nor am I advocating that, but has there been any
evidence that new seropositivity is increasing despite our
educational efforts? I am not talking about any one group. We
know in the homosexual group it has come down. We know that what
we are reading about in.the minorities. Has the overall figure
changed?

DR. KOOP: The answer to your question is no, Dr.
Walsh, but it is too early to give you an answer. You see, we
are talking about that 36 percent increases in penicillin
resistant gonorrhea and infectious syphilis in the first 6 months
of 1987. You are not going to see the results of that, as far as
HIV is concerned, for at least 3 years but more likely 5-1/2.
That is why I keep having this great hesitancy about supporting

19

 
 

people who say, "Don’t worry about heterosexual spread." We just
don’t know.

DR. WALSH: But you do have a fear that it may well be
increasing, but it hasn’t surfaced yet?

DR. KOOP: That is right, because of the long
incubation period.

CHAIRMAN WATKINS: Dr. SerVaas?

DR. SERVAAS: Dr. Koop, you are to be lauded for all
the good things you have done on tobacco and attacking that
problem, and my question to you is are there any studies in
progress that would provide that cigarette smoking is suppressive
to the immune system? Should we advise our HIV antibody positive
individuals that smoking might bring on ARC or AIDS more quickly?
Is that fair? Then what could we teach the HIV antibody positive
person to prevent the spread of AIDS besides telling them not to
get pregnant, if they are women? All married couples cannot use
condoms or there would be very few babies. How, without testing
do you know which women to advise, "Don’t get pregnant," so that
we keep babies coming? From your perch, can you give more press
to the "Don’t get pregnant if you are HIV antibody positive
message" if we are going to have 10,000 babies in New York by the
year 1991? My last question is are there things that needle
stick victims or those who are sex partners of antibody positive
individuals can be taught, or are there any studies in progress,
to keep these people from seroconversion? Do we know of
anything that is being done in that area? Thank you.

DR. KOOP: The answer to your last question is no.
The answer to your first question about tobacco and knocking out
the immune system is that there is no scientific basis that would
justify your recommending that. The other questions having to do
with HIV positivity, especially in women, go back to what I said
earlier about the lives that these people live. Most of the
children who are being born today who are HIV positive are being
born either to drug-abusing women or to the sexual partner of
drug-abusing men. Although they may not be addicts themselves,
they are living in that disjointed, fragmented life that addicts
live. They are, therefore the category that I said are very
aifficult to reach with a written message. They don’t congregate
where you can talk to them. They don’t tend to go places where
you can pick them up before they make a decision to get
pregnant. Again, it is one of those imponderables and a very
difficult group to reach.

I do talk about the necessity for people who are

planning to have a child to be certain that both partners are HIV
negative. But again, I suspect that practically all of the

20

 
 

 

pregnancies that you and I are concerned about are both
unplanned and unwanted.

CHAIRMAN WATKINS: Dr. Crenshaw.

DR. CRENSHAW: I have two questions. Hopefully we will
have time for both, but the first is relating to the comments you
made about heterosexual spread. I cannot tell you how much I
appreciate them. I think we need to change the misleading
impression that exists today that there is some question about
heterosexual spread. I want you to correct me if I am wrong.
While we talk about 4 percent in the heterosexual population the
figure is really closer to 25 percent. If we look at the
percentage of those who may have acquired HIV through
prostitution or IV substance abuse that continue to be
heterosexually active and add that to the 4 percent who acquired
it heterosexually, we actually have 25 percent of the existing
cases of AIDS in the heterosexual community. Is that correct?
Would that be fair?

DR. KOOP: That is my judgment about it, Dr. Crenshaw,
and I think there are so many things that we could talk about.
For example, there is a whole segment of people who say, "The
only way you are going to get heterosexual spread is if you have
some kind of a lesion on the male or female genitalia or you have
chancroid or you have the chancre of syphilis. I think people
forget the poor health of the American cervix which is probably
the entry of the virus in most people. As I talk to
gynecologists, they are frightened to death about the spread of
this disease because so many people have had a bout of
Chlamydia. There cervices are raw. Gynecologists tell me that
when they take a Pap smear the cervix lacerates and bleeds
because it is so tender. If that is the case, the transmission
should be very easy. That is why I think we have to hold our
judgment about where we will be 5 years from now on heterosexual
HIV positivity.

DR. CRENSHAW: The other good thing is that if people
keep their concern level high, we may be able to influence the
shape of the curve in the future.

The last question is that since most of us agree that
sexual transmission is the primary mode through which this
disease is spreading and although we have got all sorts of mixed
input from surveillance and prevalence experts, there is one
thing that they all agreed upon, and that was to have a self-
sustaining epidemic, it requires that a person infect only one
person during their lifetime. That is what I was told, and that
struck me very deeply. I have hard you say in the press or I
have read in the press that you have advised that those who are
negative not have any form of sex with someone who is positive.
I would assume that also means vice versa. What I would

21

 

 
 

 

appreciate some help with is the dilemma of giving advice like
that which sounds very harsh for the quality of life of someone
who is living an perhaps handicapping and crippling their libido
severely and the other negative alternative which is taking even
a small risk of having someone else who is infected. How are you
dealing with that? What are you advising?

DR. KOOP: I don’t think I ever said that, Dr.
Crenshaw. There are certain things you don’t say, and I think
that is one of them. I go through a certain litany whenever I
talk about this so that I don’t offend people who would
misinterpret an answer that I give as being the only answer I can
give. So, I always say someplace in answering a question like
that that the only absolutely 100 percent guaranteed way of not
transmitting AIDS is to be sexually abstinent. I follow that by
saying that that is not a bad rule for kids in school, AIDS or no
AIDS. Then I say, "However, it is not a viable way of life for
most people. But fortunately, there is such a thing as faithful
monogamy." The way I put it is, "Find someone worthy of your
love and respect. Give that person both. Expect the same in
return and remain faithful to him or her and vice versa."

DR. CRENSHAW: Thank you.

CHAIRMAN WATKINS: Dr. Koop, to keep you on your
schedule, let me say that we are very proud to have had you here
with us this morning. You are viewed in this country and
worldwide as the premier leader in the education and prevention
effort with respect to AIDS. We would like to dialogue with you
much more as our final report begins to be put together,
particularly in this area. So, if that is permissible with you,
I will reserve my questions and would like to generate that
dialogue as we wander through these next very difficult sets of
issues, including such potentially contentious areas as testing
and its relationship to education. So, thank you very much for
coming. As the senior at Cardoza High School was quoted in the
paper as saying, "You tell that general dude we are glad to have
had him down here."

DR. KOOP: Oh, they said that I was a cool dude. That
is different.

CHAIRMAN WATKINS: Oh, that cool general dude. Thank
you, Dr. Koop.

DR. KOOP: Thank you, sir, and I would be very happy
to come back. Let me just say that having worked with you for a
couple of years on your Panel for Excellence, when you got this
job, I said, “He will pull it off," and you will.

CHAIRMAN WATKINS: Thank you, Dr. Koop.

22

 

 
 

 

Our next panel is an Overview of the Public Health
System. The witnesses are Dr. Bailus Walker, President, American
Public Health Association, Professor of Environmental Health and
Toxicology at the School of Public Health, State University of
New York at Albany and Dr. H. Denman Scott, Executive Committee,
Association of State and Territorial Health Officials, Director
of Health, State of Rhode Island. A very cordial welcome to both
of you. Just before we commence in hearing your statements this
morning, I would like to have Ms. Christine Gebbie, our public
health official on this Panel, say a few words.

MRS. GEBBIE: Thank you. It is a particular pleasure
for me to see the agenda that we have for the next couple of days
and to focus in starting today on the public health system. As
we found, I think, in earlier testimony looking the illness care
system or the system for responding to drug abuse, it is
important to understand the components of that system and how
they work together in general before looking at how they can
relate to a specific disease such as AIDS.

I think we are going to hear a lot today about those
components, about how decision making is structured within public
health and about specific program elements but, also, very
importantly, about the diversity of public health in our country
and the way it is particularized to each state and to each
community within a state. I am impressed by the panel of
witnesses that staff has put together that reflects some of that
diversity. I am hopeful that we, as a panel, will gain
considerable additional perspective on ways that that system can
be strengthened and that diversity can be capitalized on in
constructing programs that will prevent AIDS and that will work
in all of the various localities in the country. I do look
forward, to these 3 days of testimony.

CHAIRMAN WATKINS: Thank you, Ms. Gebbie. First then,
Dr. Bailus Walker.

DR. WALKER: Thank you very much, Mr. Chairman. Let me
hasten to commend the very progressive way that this Commission
has carried out its responsibilities. Your vigor and your sense
of direction is very encouraging to all of us.

Mr. Chairman, I specifically want to commend you for
your progressive leadership of this important group. You may
have my written statement. So, let me summarize it. I think it
is very clear to even the most casual observers, that after all
of the federal policy has been developed, and after all the
technical advice has been heard and the regulations have been
observed, it is at the state and local level of state and local
health departments where the service is actually delivered. It
is at this level that all the congressional deliberations and
legislative appropriations and recommendations of commissions

23

 
 

 

such as yours, are reduced to their most common denominator:
direct services to people and their communities. These services
can be categorized in many ways. One can classify them as
regulations, service and education. Another approach is to
classify them as personal health services or health care,
environmental health services and education. They are provided
by a large group of specialists, including statisticians and
epidemiologists, physicians, nutritionists, administrators,
educators and a whole series of experts in a variety of health
and disease problems.

While the state agency has primary lead responsibility
for public health services, it is but one member of a very large
and extended family concerned with health matters, and this
family includes several other agencies in state government that
carry out aspects of health services, as well as voluntary
organizations.

There is a great variety of organizational structure ad
functions in state health departments across this country. For
example, in a number of states the state health agency is a
subdivision of a super agency, which includes welfare,
corrections and other rehabilitation services. In other states,
the state health department is the mental health authority, and
still in other states, the state health departments have
responsibility for state Medicaid and other health care financing
programs, as well as environmental protection.

Substance abuse and related addictive disease services
are separate from other public health activities in numerous
states. Two state health departments, for example, operate major
biological production centers in which they produce their own
vaccines and other biologics, and thus they were not affected by
the recent shortage of vaccines.

At this point, it may be appropriate to ask is this
variation in organizational structure and function bad? Not
necessarily. I think it is fair to say that health activities
and health problems vary from state to state, and the
organizational responses must be suited to the real needs of a
state rather than some mythical ideal model organizational unit.
For example, several states have had to confront the issue of
organ transplantation. Others have not. Some states have had to
deal more extensively with the AIDS issues and toxic substance
problems than have other states. In any rational rating of what
measures have made the largest quantitative difference in the
health of human population, I think those services or activities
emerging from public health agencies would have to rate
commendations of the highest order over those in a one-to-one
medical care setting. But as public health needs of the nation
and world have changed in the past several decades, so has the

24

 

 
 

 

mission and the scope of services provided by departments of
public health.

For example, many public health agencies have had to
become last resort providers of personal medical care, and this,
to some extent, has drained away the vital resources from other
population-wide services.

Turning specifically to AIDS, I submit that state
health departments have had to confront a new maelstrom of
social, moral, economic, legal, political and scientific issues
unprecedented in the history of the public health service system,
but reflective of the national interest. They have mounted a
number of specific programs, and I would say pioneering programs
in response to this epidemic. Permit me to list some of these.

First, state health departments have established more
expansive systems of surveillance to provide the basic data
needed to practice epidemiology, and those data not only helped
the practice of epidemiology, but they have helped us to
establish priorities and guided the allocation of resources and
facilitated better targeting of services.

Second, state health departments have been very active
in screening newborns, and these programs have provided
information that we otherwise would not have had about the
prevalence of the HIV in newborns, a most important piece of
epidemiological information.

Third, AIDS patients with little or no health insurance
are quickly impoverished by the catastrophic medical costs.
State health departments have provided the leadership in creating
networks of specialized care, quality insurance and emphasis on
case management, and here, among the incentives for private
sector involvement, have been adjustments in the reimbursement
system. Many of these adjustments have been due to state health
department involvement.

Fourth, from the beginning of the AIDS epidemic, state
health departments have made a multilevel effort to educate the
public about the disease, about personal protective measures,
about facilities and services that are available for testing and
counseling and care and to help the public put these into
perspective. Health education is not a new activity of state
health departments. It has long been one of our primary avenues
of advance in the promotion of heath, and prevention of disease
and dysfunction. Today several state health departments have a
full complement ‘of effective professional health educators and
behavioral scientists. Fifth, AIDS has sharply delineated the
importance of collaborative efforts and integrative action within
and among agencies and organizations and the boundaries that tend
to delimit them. Here state health departments have been a very

25

 

 
 

prime force in drawing together very disparate groups of
organizations of the community for a cohesive approach to this
problem.

State health agencies and state health policy makers
and administrators are faced with an enormous task for
maintaining this momentum at-the service delivery front.
Maintaining this momentum, will require several things. First,
it is important that we continue to recognize AIDS primarily as a
public health and scientific matter and that many of its
dimensions should remain in the health and medical arena where
the rules of debate are much different from those in the
political arena.

The public interest is served best when AIDS and all
the public health policies and programs are based on a scientific
knowledge base and not on fear, prejudice, morality and political
ideology.

Many public health agencies do not have the scientific
or technical skills necessary to address the AIDS epidemic.
Technical capacity at the state and local level is unevenly
distributed. Some states and localities have considerable
expertise. Others are seriously deficient. Resources are
necessary for public health agencies to ensure that the necessary
AIDS services are provided, either through the private or public
sector, and to strengthen capacities to further understand the
public health issues associated with this fatal disease.

Certainly, I would suggest that federal support for
state level programs must be increased to help balance
disparities in revenue-generating capacity and to encourage far
more attention at the state level to the national AIDS program
objective. The Federal Government, in my view, can do much to
encourage federal linkage, coordination and cooperation among all
components at the state and local level if it properly channels
its federal resources. _

Mr. Chairman, I think it is fair to say that at the
state and local level there is the desire to effectively
participate in altering the course of the epidemic. I think all
state health officials are committed to this effort, and as
President of the American Public Health Association, I can assure
you that we are ready and willing to work with you and the
Commission.

CHAIRMAN WATKINS: Thank you very much, Dr. Walker.
Dr. Scott, we will hear your presentation, and then we will open
the floor to questions.

DR. SCOTT: Thank you very much, Mr. Chairman. It is a
pleasure to be here and I would echo Dr. Walker’s comments

26

 

 
 

ee

concerning the pace and vigor in which you are addressing this
issue. I think for state public health officials it is an
extraordinarily interesting time to be in this particular
catbird’s seat.

You should appreciate that the state health officer has
a broad legislative authority to protect and promote the state’s
health, in a sense much broader than anything that exists at the
federal level.

Let me just share with you the statute which we operate
under in the State of Rhode Island briefly. "The Department of
Health shall take cognizance of the interests of life and health
among the people of the state, shall make investigations into
the causes of disease, the prevalence of epidemics and endemics
among the people, the sources of mortality, the effect of
localities, employment and all other conditions and circumstances
on the public health and do all in its power to ascertain the
causes and the best means for the prevention and control of
diseases or conditions detrimental to the public health and adopt
proper and expedient measures to prevent and control such
diseases and conditions."

So, there is the authority. I think it is very similar
in many states allowing officials to seize an issue like AIDS and
try to come to grips with it. Now, we cannot do it alone. We
Clearly need the help of the Federal Government, both from the
point of view of gaining knowledge, expertise and money, but once
you have the authority, how do you then, in fact, use it
effectively? The health official has to do four things,
basically. One is to define a public health agenda based upon
the patters of morbidity and mortality in the community. Two,
community concerns need to be listened to carefully as expressed
by elective officials, individual citizens and professional and
institutional groups. Three, to get this job done, surely it
helps to have a very close working relationship with your
Governor, whether you are a member of the cabinet, as in my
situation, or part of an umbrella agency, as in other situations.
The health officer, who brings a considerable amount of
professional knowledge and experience, needs direct access to the
governor. I have been very fortunate in working under both a
Democrat and a Republican. I have had that access to both quite
independent of any of the partisan wars which are a necessary
part of our political fabric. You will be hearing, tomorrow or
the next day, from my governor, Ed DiPrete. Rhode Island, in
1985, had only seven cases and no state resources committed to
AIDS. Even with these low numbers, Governor DiPrete mentioned
AIDS as an important problem in his 1986 State of the State
Address. He proposed to spend $120,000, a modest sum, but
symbolically terribly important. Now, in his new 1988-89 budget,
he is proposing that we move to $3 million. So, we have gone
from a nickel per capita spending to $3 per capita, which, in

 

27

 

 

 
 

 

association with federal assistance, will give us substantial
support to deal with this problem.

Another crucial thing that we must do as health
officials is bring current scientific understanding to the public
health agenda. It is bringing this perspective into the middle
of the legislative and public debates that is indispensably
important in my view. We, also, have a very important function
at the state level of convening key individuals and groups to
work on the issues that are defined in the agenda. The agenda
items need first to be defined rigorously in terms of scope.
These key individuals then help garner the resource to deal with
them, to implement the programs and eventually evaluate their
effectiveness.

Then we have an enormously important task, which is
operative at many levels, and I think we have heard Surgeon
General Koop speak so articulately about the issue of educating
the public at large, and one of the rubrics I operate under is
really that in many ways we are trying to elicit concern where
there is none. Then we are, also, very commonly trying to calm
fear where it is excessive. We are also placing health issues
into perspective with one another, which is a crucial function of
public health education. I think we have all been properly
obsessed with AIDS, but there are many other important concerns
Dr. Koop mentioned smoking, but I’m thinking about environmental
health issues. What do we do about pesticides and drinking
water?

Now, let me give you just a couple of statistics here.
If we just look at AIDS, we obviously and appropriately focus on
the IV drug abuser, the homosexual male, and we are starting to
worry about the heterosexuals, especially those who are mixing it
up with drugs. But what about everybody else? We say that that
is maybe not such a problem, and relative to the extreme
statements, it is not. But I just came back a couple of weeks
ago from a committee meeting on immunization in this country,
and there is a big concern about the problems of reaction to
pertussis vaccine. This is whooping cough. Now, with maybe 1 in
300,000 injections, you get a serious reaction. Some people
think it is more, but that is a handful of children a year who
may end up with brain damage as a result of that vaccine. I want
you to keep that 1 in 300,000 figure in mind. Also, keep in mind
that the cost of vaccines in this country for a child in the
first year of life has gone from roughly $10 to $120 because we,
as a society have said that we have got to pay for this through
our tort system.

So, you should not get embarrassed about talking about
big numbers. This business of going from 10 to 240 million just
for vaccine costs to compensate five children or so a year is an
incredible imposition of expense.

28

 

 

 
 

ee

Consider what we want to gain in controlling
pesticides in drinking water. There the benchmark is that we
want no more additional deaths due to cancer -- 1 in 1 million
over and above what we have over a lifetime. So, this means that
the risk assessment models that are put forward are couched in
very conservative terms.

Now, to move your pesticide level from, say, 100 parts
per billion which might give you, say, 10 extra cancer deaths in
a given community down to 10 parts per billion which would only
be one death, is often an enormously expensive proposition. In
the environmental health movement now, we are spending billions
of dollars to mitigate these risks.

I don’t argue against that. I think there is much
rationale for it, but again, this is a matter of putting all this
into perspective. So if I hear people saying, "Infection 1 in
10,000 people or 1 in 100,000 people is not a big problem," well,
baloney. It is a sizeable problem when you contrast and compare
it to the problem of vaccine injury or the problem of
environmental health.

Finally, let me offer one comment on our relationships
with the CDC at the state level. This has been, over many years,
a very, very constructive business. Needless to say, there are
communications problems, but CDC has provided technical
assistance, financial support and free, easy access for many,
many years and continues to do so in the context of the AIDS
epidemic.

 

This relationship I am sure will flourish. It is now
institutional, and it always needs to be thought about and
preserved, but it is something that is really grand. Another
thing that the CDC has done is recruit through the program called
the Epidemic Intelligence Service, EIS, many health
professionals, mostly physicians, who over the past 30 years have
been pulled into the field of public health when surely they
would have gone in other directions. I am one of those; it
really introduced me to the State of Rhode Island for the first
time, and I have circled back into public health, and I must say
that it is singularly interesting. So, with that, let me close.
Thank you.

CHAIRMAN WATKINS: Thank you very much, Dr. Scott. We
will start the questioning from the Commissioners this morning
from my right. Mr. DeVos?

MR. DEVOS: Gentlemen, as I understand the role of the
public health positions you fulfill in either the national, local
or state level, you are really more facilitators and coordinators
as opposed to precise deliverers. Is that correct? In other

29

 

 

 
 

 

words, you don’t actually run the hospitals? You coordinate
between agencies, the political side, the financial side, and.
isn’t one of your primary roles education and hopefully, raising
the level of awareness of various diseases in your community so
that these organizations can function?

DR. WALKER: Certainly one of our major roles is
education, but I think we are, also, providing a wide range of
services, and if we do not provide them directly, we try to make
sure that they are provided somewhere in our state or in our
community, that is in the private sector or the public sector.

MR. DEVOS: That is what I understand, but my question
then is your emphasis on the need to communicate with the
communities you represent in more efficient ways. We are working
today on education here primarily, as well as prevention. You
mentioned smoking. You mentioned all the various diseases. We
make few inroads in some of them, make great strides ina few,
but we are looking for models here that work on education that we
could translate into action for other cities and states in this
nation.

Can either one of you give us a model that you are
using effectively in your community that is cost effective in
getting the job done that relates to AIDS?

DR. SCOTT: I think that we don’t have any model right
now which has been evaluated. However, Governor DiPrete did use
his influence as governor to urge that the State Board of
Secondary Education to introduce a curriculum in all the cities
and towns of the state from K through 12. Now, you don’t just
learn from state programs. You learn from messages coming from
Washington, from all over the United States. What we really want
to find out is whether our community is getting a fuller
understanding. Now, we have two surveys back-to-back which shows
that gradually people are learning about AIDS. There is still a
lot of misunderstanding. There is still a lot of fear about
casual transmission, but it is less so. So, we are beginning to
see some positive impact on the public side.

MR. DEVOS: My only concern is that when you do find
effective means that you communicate them to this body or to
somebody that they can transmit that to the rest of the people.
We have got to find cost-effective ways, and the sharing of that
information will be most helpful. I thank you.

CHAIRMAN WATKINS: Dr. Walsh?

DR. WALSH: I have one question for each of you. Dr.
Walker, we have heard form many federal and state health
officers on the same sentiments that you echo and that is that
AIDS is primarily a public health scientific matter and should be

30

 

 

 
 

 

treated, looked at in this way. Yet, the more we learn about
this disease; we find there are tremendous amounts of societal,
behavioral and environmental problems. Our interim report, which
has received such praise, goes into everything, from building
low-cost housing to expanding all sorts of things which are in
the political arena. The Congress has at least 45 bills before
it, most of which deal, not with the scientific and health
aspects of AIDS, but with the fringe problems with it. I just
want to be sure that I am not misinterpreting the phrase that it
is "purely a health and scientific matter" that we have heard so
often because it is obviously far more than that. Would you
comment on that, please, Dr. Walker?

DR. WALKER: I think the point that we were attempting
to emphasize is that the policy decisions and decisions that are
made in the political arena should be driven by the science or
the epidemiology of the disease, and we should rely on the
scientific community to provide us scientific data. They now can
translate it into policies’ and budget decisions. My concern is
that this disease be treated as a public health problem and not
be mired in the political arena where the rules of debate, as I
said, are somewhat different from those in the scientific realn.

DR. WALSH: But given the geometric progression of the
disease, as a public health officer looking at it purely
scientifically, would this (if you did not think of the political
significance and the civil rights and public issues) alter your
approach to this disease in regard to confidentiality, testing
and the like?

DR. WALKER: I am sorry?

DR. WALSH: Would it alter the commonly-held views that
confidentiality must be preserved? Some of this legislation
before the Congress doesn’t even permit a wife to be informed if
her husband is infected and there is a penalty if the doctor

divulges that.

Now, my experience as a physician is that if you apply
the purely scientific basis, then this is at some variance with
what is commonly-held practice today.

/ DR. WALKER: But I think this disease brings a somewhat
different dimension than other diseases we have had to deal with
in the history of public health. The stigma attached to this
disease is one that certainly we'must be concerned about, and I
think we, also, recognize that there have been some social
actions such as discrimination in housing and jobs and other
areas adversely affecting AIDS patients.

31

 

 
 

 

DR. WALSH: But is the stigma worse than syphilis? The
end result is worse, we know. It is death. But is the stigma
worse than syphilis?

DR. WALKER: It is at this point, in the course of this
epidemic. In earlier days when we were dealing with syphilis
there was a stigma attached. I am not so sure that we have that
kind of stigma attached to syphilis now.

DR. WALSH: Okay, one question for you, Dr. Scott. You
raised this point about the pertussis vaccine and I share the
view that 1 in 300,000 is a lot when you get right down to it.
The recommendations with which we are confronted include
liability relief for treatment IND’s, applicable to vaccines and
others. Obviously if we get liability relief accepted for this
one, there will be an effort to extend it to all vaccines. We
know that one of the reasons for the high cost of vaccines is
that liability has driven the production of them abroad. I think
there is only one company basically making this type of vaccine
in the United States today which drives the costs up. Do you
feel that we are wise or unwise in seeking liability relief for
this, with the implication that goes along with it?

DR. SCOTT: Dr. Walsh, I think that the liability
problem in society is very broad gauged to be sure. The Vaccine
Compensation Act, which passed a couple of years ago and has been
funded this year with the vaccine tax, actually provides some
liability relief for pediatricians in the administration of the
vaccine. That is one of the main reasons I think they supported
it. I have some trouble with this piecemeal approach to the
problem and yet, I think that the impediment is so powerful to
getting drugs and trials and vaccines going that it is important
to the Commission to consider it.

DR. WALSH: To advocate it?

DR. SCOTT: Yes, to advocate.

DR. WALSH: Fine. I just wanted to be sure after your
testimony because we feel strongly, fairly strongly about it. I
don’t know what other answer there is. Do you have any comment
on that, Dr. Walker?

DR. WALKER: No.

DR. WALSH: Thank you, Mr. Chairman.

CHAIRMAN WATKINS: Dr. SerVaas?

DR. SERVAAS: My question is to Dr. Scott. You pointed
out that vaccine accidents, I think you said, "One in 300,000
caused costs for each baby to be vaccinated to jump to $120." My

32

 

 
 

 

question is will we see costs of blood transfusions go up as
those who get AIDS from transfusions bring legal action against
blood banks? We have in Indiana a lawsuit against our local
blood bank, and we, also, have two AIDS patients who had their
transfusions in 1986, long after our antibody testing was in
place. If a blood bank lets high-risk patients slip through, is
this going to cost a great deal of the blood banks to reimburse
those who received blood from high-risk individuals?

DR. SCOTT: I think already the cost of blood
transfusions has been affected dramatically. I don’t know if it
has doubled, but it is close, largely because there has been a
scarcity created because a lot of people are afraid to give
blood. Much blood is being discarded, not only because of HIV
positivity but because of new tests for hepatitis. If there are
successful lawsuits because of HIV-tainted blood, the cost of
such lawsuits will likely be passed on to the price charged for
blood.

DR. SERVAAS: Do you have any knowledge of the
incidence of suits like this in the country now?

DR. SCOTT: No, I don’t. I think people have been
screening the blood properly since the introduction of the test
in March 1985, that is, screening potential donors, and this has
been regular policy. They have been giving people an easy way to
get their blood out of the system through questioning about high-
risk behaviors and so forth. If those procedures are quire
tight, they have done everything you can humanly do to screen the
blood, and that would reduce the liability. This is in contrast
to the time prior to the test, when many people were convinced
that the blood was tainted, but we didn’t have the test to
provide it. Some people said, "Stop using it or use another
alternative screening test." From that period I am sure some
suits will emerge, and I imagine they are in court now.

DR. SERVAAS: Thank you.
CHAIRMAN WATKINS: Dr. Crenshaw?
DR. CRENSHAW: I will pass.

CHAIRMAN WATKINS: Mr. Creedon, on the other end of the
table. Questions?

MR. CREEDON: This is a follow-up, in a way to the
question that Dr. Walsh had addressed to Dr. Walker. You said
that AIDS should be treated as a public health scientific matter
rather than a political matter. I guess the question that we
have been struggling with, to some extent, is what is the proper
balance between treating it as a public health matter and
recognizing the civil rights implications of areas, such as

33

 

 

 
 

 

confidentiality? I just wonder what your view is as to whether
the proper balance is being struck now in the different
activities that are going on in the various states in particular?

DR. WALKER: I think we are moving in that direction.
We have more scientific information about this disease which
helps the public understand many of the related issues. I think
we are moving in that direction to strike a proper balance. We
are not there yet, but I am very encouraged about the direction
in which we are moving.

MR. CREEDON: Thank you. Dr. Scott, in the testimony
of Surgeon General Koop dealing with the question of education,
he stressed the fact that the educational efforts have to be
directed toward particular groups. So, the homosexual community
is one effort that needs to be made, and in the IV drug user
community, it is a different effort, and in grammar schools and
public schools and high schools and so forth. I wonder whether
you have had any experience in Rhode Island, in particular, with
respect to education of the IV drug users. If so, would you
share that experience with us? |

DR. SCOTT: Yes. We have a special testing and
counseling site which serves primarily IV drug ahusers, and we
reach them largely in two ways - by their coming in voluntarily
and, also, through some Methadone maintenance plans.

The very fine young woman who staffs this site is a
nurse and despairs about getting the message out. She now (and
I have met with her on a couple of occasions) is pessimistic
about really how it can be done, and she doesn’t know how, yet
she is very much in touch with a number of these people.

The stupefaction that comes from using the drug and the
drive to fulfill the craving represent an enormous impediment. I
think that eventually, when the IV drug community which in some
ways is fairly close knit in our state, starts seeing a number of
their friends die, this will send a very powerful message. Then
they will start talking about what is going to be of benefit and
what they ought to pay attention to. They will be more
sensitized.

Now, we are just starting to see a number of drug
abusers die in this epidemic. We now have almost 40 percent of
our cases falling into this category. But we face formidable
obstacles. I don’t have any real kinds of specifics to say, "Do
this and do that." But being in touch with those who are in
touch and listening to them is certainly an important source of
information.

MR. CREEDON: Have you used ex-drug addicts on a one-
on-one basis in an outreach program at all?

34

 

 

 
 

 

DR. SCOTT: We haven’t, but we have plans. We are
going to get extra money this year which will enlist ex-addicts |
and the like so we can really try to get directly to the people
in a much more forceful way.

Now, we are more into the more passive recipient. If
you come in, you get educated. We hope now to be reaching out
more.

MR. CREEDON: Are there literacy problems in Rhode
Island in the IV drug user community?

DR. SCOTT: We have a large Hispanic group, and there
is some language problem there, but we do have people who know
Spanish. Now, regarding the reading issue, I just don’t know
enough about that.

MR. CREEDON: Thank you.

DR. SCOTT: Could I comment just a bit about the
politics, the question you asked Dr. Walker? To me, you are
inescapably swept into the political dimensions of this, and I
have felt it powerfully. I have been attacked vigorously from
time to time by various groups, and you have to be steeled and
prepared to debate. One of the things that strikes me is that
there are two operating fears, principally, that we have to cope
with. One is the fear of discrimination, especially on the part
of the homosexual, so the stigma just isn’t of terrible
infectious disease, but it is the homosexual who, also, is being
blamed by many for perpetrating this disease. So, it is a dual
kind of tyranny and terror that they sense, and that has to be
dealt with because if you don’t start getting firm
antidiscrimination statutes and protection under the law in
place, that fear is going to impede our ability to deal with the
epidemic, I think.

The other fear on the part of health care workers and’
other occupational groups is not only about getting the disease,
but also if they are exposed in some way or another, not being .
able to find out if the person they were exposed to is, in fact,
positive or negative.

We had a huge debate on that, and I think we are going
to finally work it out. We have got every group - the
occupational groups, the nurses, the doctors, the gay community,
and so forth - to come up with a solution. If we can take care
of those fears first in law and then in spirit and practice, we
can move forward with a much more vigorous public health program
than we have had heretofore. We have not used testing in the way
I think we might have, largely because of these very real fears.

35

 

 
 

 

CHAIRMAN WATKINS: Ms. Gebbie?

MRS. GEBBIE: I have a question for each of you.
First, Dr. Walker. We have heard over the course of our previous
testimony from other professional associations about concerns
that only limited numbers of their members know enough about AIDS
to be comfortable caring for patients, to willingly accept
referrals or to serve as community resources. We have discussed
that about doctors, nurses and dentists from time to time. Could
you comment on your sense of the APHA’s membership, that is the
broad cut of public health workers? Are they having some of the
same fears and potentially discriminatory behavior in their work?
How far are they toward being ready to be a real part of the
prevention process?

DR. WALKER: I think some of those concerns are being
addressed. Many of the affiliates of the American Public Health
Association are holding regional conferences and regional
seminars designed to help the health professional. People who
are practicing on a day-to-day basis understand the dimensions,
but I am not convinced that we have reached all 50,000 members of
the Association with that message. So, there is still a group
out there that has some reluctance about serving patients, with a
lack of knowledge,, but we have an aggressive program under way
to try to reach all of the practicing health professions.

MRS. GEBBIE: You haven’t done any sort of membership-
wide survey to get a feel of attitudes? What is your basis for
planning those education programs.

DR. WALKER: I think the feedback that we have gotten
from our members, in fact, we got some feedback at our annual
meeting in New Orleans last fall indicating a real need for more
information to filter down to health workers who are practicing
in the field. That is why the Association in its headquarters
here in Washington has moved this to the top of their priority
list and are working aggressively to provide that information.

MRS. GEBBIE: You read the Rhode island mandate which
is a very broad one. What I often hear from people once they
have heard that kind of statute is something on the order of
"then why didn’t you get up and do something about this
epidemic?" In the minds of many, official public health agencies
were very slow to get involved. You have already talked some
about that, but I would appreciate some more discussion of this
appearance of inaction that some people sense in the public
health community and whether there is a real reluctance to use
the powers that exist legally?

DR. SCOTT: I think to use those broad powers you have
to have a sense of agreement that you have applied them wisely
and fairly because if you don’t, you won’t have any opportunity

36

 

 
 

=

to exercise the authority in the future. So, in a low incidence
state like Rhode Island, one convenes key community people and
explains the scientific issues and the nature of the epidemic.
One sensitizes the governor and the legislature to these issues
and says, "Look, this is going to be an issue. We are going to
have to have resources," and then things start to take off. I
think in Rhode Island we were in the relatively luxurious
position of saying, "Look what is happening out there to other
areas of the country," and so, we could say, “Let us get ready,"
and I think we have. We have been a little dilatory here and
there. Those who were on the cutting edge of the epidemic really
didn’t know what was going on. It was so frightening, and in
that remarkable book, And the Bank Played On, the whole political
problem of using the authority was beautifully illustrated. You
have to have a receptive community to use it, otherwise you are
out.

CHAIRMAN WATKINS: Dr. Lilly?

DR. LILLY: I have a few questions. I would like
to go back to something you said a little bit earlier, Dr. Scott
about the need for discrimination statutes. As I recall, a few
months ago, Secretary Bowen expressed reluctance on the part of
the Federal Government to tackle the problem of anti-AIDS-
related discrimination issues on the federal level, feeling that
that should be left to the states. Could you comment on that?

 

DR. SCOTT: From my particular state viewpoint, I do
think it is important for a state to address it and take it very
seriously, in and of itself as an important recognition that we
want to discuss discrimination in our society. But, also, the
benefit here, is that by so doing, we can deal with AIDS ina
more wholesome way. As to whether it should be dealt with at a
federal level, there is certainly ample precedent for federal
civil rights legislation. There are a variety of statutory
provisions, as I understand it, which would protect people under
federal law. But every state, I believe should seriously grapple
with the question and if the Federal Government sees that it is
not being addressed or is being stepped away from in various
states, I think that would be a greater prod for federal action.

DR. LILLY: I, on that issue, am very interested in the
idea that in the workplace we now have statutes that protect
people against discrimination on the basis of having AIDS. They
are considered to be handicapped. On the other hand if I, as an
employer, have a gay man who has or is thought to have AIDS or be
HIV infected, I can perfectly readily get rid of him by firing
him because he is gay. There is nothing that says that I cannot
do that. That is something that worries me a great deal.

Another quickie question, do know how many HIV
positive people there are in the State of Rhode Island?

37

 

 

 
 

DR. SCOTT: My guess is, we have done the same kind
of coordinate study as the --

DR. LILLY: So, it is a guess?

DR. SCOTT: It is a guess, but we do have
seroprevalence data from a variety of sources, and then, trying
to estimate the size of the various populations, we come up with
between 4 and 5 thousand.

DR. LILLY: Do you need better data than that or is
that adequate?

DR. SCOTT: Absolutely. I think that one of the
questions that came up with Dr. Koop is, will we really know
whether we are successful or not by the rate of occurrence of new
infections in the community? So, in some way or another we need
to find out what the annual new incidence of infection is.
Because the incubation period is 5 years, the only way to do that
is to put groups under regular periodic serological surveillance.

We just have no idea, as far as I know, anywhere except
for some very small cohorts in San Francisco and maybe New York,
as well.

DR. LILLY: Are you able to plan to get that
information? Are there barriers to getting that information?

 

/

DR. SCOTT: Oh, yes, I mean the whole milieu around
testing is an enormous impediment to it. I think out tendency
now to go through all this anonymous stuff is really peculiar
because when you do come up with a positive, for God’s sake, you
cannot get to the infected persons and advise them of their
positive status, and the implications of, one, how they should
conduct their lives, and two, what kind of medical surveillance
they ought to be under.

So, we are doing all these anonymous surveys all over
the United States in which we identify hundreds of people and
have no way of getting to them to advise them, other than saying
that we have voluntary clinics where they can come for help.
That seems to me to be a screwy way to tackle the problem.

DR. LILLY: One last question, you have a budget for
AIDS. I think you said that it was $3 million or whatever.

DR. SCOTT: We hope it will be $3 million.
DR. LILLY: I was wondering, what are the criteria that

you use in deciding how to allocate that budget?

38

 

 

 
 

 

DR. SCOTT: There were two. One was our internal
departmental sense of how rapidly we could reasonably expand the
effort and not just throw the money away. S50, if we are going
from a budget of roughly $400,000 to $3 million, an eight-fold
increase in one year, a major gearing up is required. The second
is that the governor, did not say to this AIDS Commission which
was created last fall and which I chair, "You guys tell me how
much you need?" I mean, then the cookie jar would be just a
little bit too big. Instead, he said, "Let us think about a
number of 3: to 34 million," and that is how it came about. It is
not very scientific, but that is how it was.

DR. LILLY: No, I meant once you have the figure, how
do you decide how to allocate it, how to spend it?

DR. SCOTT: Oh, I didn’t understand. We have put
together a very broad-gauged AIDS advisory council which is the
governor’s appointed council. It has now been rigorously
deliberating how to shape that spending tactic. The majority of
it, roughly $2 million, would be devoted to prevention and
education. The smaller million dollars would begin to shore up
shelter and home care services, which are lacking as opposed to
acute care which is really quite satisfactory.

CHAIRMAN WATKINS: Dr. Lee?

DR. LEE: My two main questions have been delivered by
Dr. Walsh and Mr. Creedon, but let me amplify just a bit. I am
happy to hear your attitudes about your responsibilities as
public health officers and that you are not abrogating those
responsibilities in dealing with a fatal infectious disease. It
has always seemed to me to be a screwy way to operate from a
public health point of view. I had been wondering, and I have
been listening to you talk, and I am getting the answers to how
you sleep at night with the decisions that have been made up
until now.

The liability, I can assure you, remains a tremendous
concern of ours. We are going to hold a lot more hearings on it,
and we are going to coordinate our activities with, I believe, it
is the AMA or the IOM who is holding a conference along these
lines, as well.

One final thought to back up Frank Lilly, and I don’t
want an answer. It is just because it has no answer, but it is a
difficult problem. If the gay population was assured of quote,
equal rights, end quote, we would have much less of a problem
with this discrimination business and much less of a problem with
everything else we are talking about . Would you agree or not?

DR. SCOTT: My sense is that giving legal protection is
a crucial first step. Then it is a matter of getting to people

39

 

 
 

 

so that their hearts can be purged of some of the hatréd which is
operative here. Now, that can come about by seeing people suffer
with AIDS -- one-on-one human contact. The more we can foster
that, the better we can deal with it. You have got to have that
basic, fundamental legal protection to start with, and that will
go a long way.

CHAIRMAN WATKINS: Thank you. Do the Commissioners
have any additional questions before I have questions of my own?
Would they like to continue? Yes, Ms. Gebbie?

MRS. GEBBIE: One other question, really for either or
both of you, and that is the question of whether AIDS is
distorting the public agenda. Are we doing so much on AIDS, we
are forgetting other things? It sometimes gets mixed up with the
question of whether if we conquered AIDS we would, also, conquer
several other problems on the public health agenda, such as
elimination of sexually-transmitted diseases in general or
elimination of teen-age pregnancy in general.

Could you comment on that overlapping or distortion
question? Are we doing enough to look for those common issues
and to strengthen a broader public health agenda or ought we.not
try to do that? Is that only confusing the issues more?

DR. WALKER: No, I would agree with you that if we can
address the AIDS problem, we can address several other problems,
and I draw an analogy between that of treating the water supply.
If we treat the water supply, we can eliminate a large number .of
disease-producing organisms, and I think if we address the AIDS
question in a very effective and comprehensive way, I think we
will address the teen-age pregnancy problem and some of the other
related issues.

MR. CREEDON: I have one more question.
CHAIRMAN WATKINS: Yes, Mr. Creedon.

MR. CREEDON: My question is a related question, but
dealing with the issue of discrimination. There is a federal
law that presently prohibits discrimination with respect to
disability in employment, for example. The discrimination issues
that we have heard have related specifically to AIDS. Any
legislation, should it be specifically addressed to AIDS or
should it be more general discrimination legislation, having
other implications, as well as for AIDS?

DR. SCOTT: Let me tell you what our AIDS advisory
council has done on this. They came up with three
recommendations. One, was that there should be specific anti-
discrimination provisions concerning HIV infection. That in and
of itself was considered important enough to Single it out: two,

40

 

 
 

 

that there should be formal recognition of no discrimination
against homosexuality, and three that the sodomy laws which still
exist in our state should be repealed. Obviously, it pertains
not just to homosexuals but to heterosexuals as well. If you
want me to guess which way we will end up, I think that given the
climate, the most likely statute to prevail will be anti-HIV
discrimination. There will be certainly efforts, also, around
the issues of homosexuality, and there is a broad coalition that
is coming together to seek that. I don’t know if it can happen
this year in our legislature, and we are just right in the middle
of it.

CHAIRMAN WATKINS: Dr. SerVaas?

DR. SERVAAS: I had a question, Dr. Scott. You talked
about anonymous testing sites. How do you think that is trending
in other states? In our state we still have anonymous testing,
and it is hard to get a fix on how many times the same person has
been tested. In California I asked these people how do they know
how many HIV antibody positive people they have because they
don’t know how often the same person has been there. Isn’t this
a problem.

DR. SCOTT: Probably it is more of a problem in
California than Rhode Island because we have a sense of whom the
repeaters are, it being such a small community. But the
anonymity does really create a lot of problems in terms of good
surveillance. Still, the anonymity is awfully important, from
the testimony of our nurse counselors and other counselors. They
say, "Boy, a lot of these people wouldn’t come in," and I really
think that is probably true. It is also true that all the
sexually-transmitted diseases have always created all sorts of
problems and will continue to| do so.| But eventually we have to
create a climate of trust with good legislation and good
practice. That will allow us from a/ public health point of view
to have this information, so we can chart the epidemic more
accurately, and I think we will move in that direction, but it is
a bumpy road.

DR. SERVAAS: Thank you.

CHAIRMAN WATKINS: Any other questions from the
Commissioners?

DR. WALKER: I think there is still confusion when
people talk about education as the most formidable weapon we have
today, as to packaging it up in some way. In some minds, it is
what goes on in the schools. In other minds, it is education of
the health care providers which we have hit very hard in our
interim report and which we think is the horse before the
education care of the nation. What about the million youngsters
each year that fall out of the high schools that aren’t in the

41

 

 

 
 

 

mainstream at all? What about the people who are not in the
workplace? We talk about AIDS education in the work place. What
about those not in the workplace.

Do you have in your association with the other states
in the nation any states that have dug into this think
discreetly in a variety of modems of education? The cultural
differences seem to make a great deal of difference, particularly
if you get to the Southwest Region of the country and where there
are a variety of cultures associated just with the Latino
population alone, whether native born or foreign born, whether
they are first generation or second generation. What is going on
aggressively to package up educational approaches, so that the
intervention strategies in education make sense as targeted to
perhaps one dozen or two dozen different kinds of modems? Where
do you see the leaders that we can go to and the states that have
really done the best job at looking at these things in some sort
of an organized collaborative with a variety of local and
perhaps even city and state officials that would have come
together to try to divine those strategies, particularly if they
are going to be culturally relevant to the particular region of
the country? One modem may be all right for New York and not be
right for the Middle West. Who are the best in that field?

DR. WALKER: Mr. Chairman, I think you have raised one
of the most difficult questions that we face out at the service
delivery front. You are absolutely right. How do we reach
people who are not in school, who are not in the military, who
are not in the workplace, who are not in health care facilities?
I am not convinced we have the answer.

CHAIRMAN WATKINS: Don’t you think that is the most
potentially high-risk area that we need to deal with?

to’...
DR. WALKER: Yes, it lis.

CHAIRMAN WATKINS: It seems to me that we talk glibly
about education, and we think in one term, perhaps those in
school. We talked a lot about that today. I am, also, concerned
that we are not focusing enough in our thinking about the variety
of education concepts that we need to be really hitting hard on.
I would like to really try to get specific to see if we cannot
find where it is being done best today, along those lines.

DR. WALKER: I am sorry that I cannot identify a
specific area where that had been done. Hopefully the National
Academy of Sciences Commission on the Behavioral Aspects of AIDS
will come forward with some recommendations as to what may be the
best approach to reach some of these groups. I would thoroughly
agree with you that a health education program in Detroit may not
be effective in. New York City, and I think we have got to take
those differences into consideration and tailor make some

42

 

 

 
 

 

programs to try to reach these groups. I am not convinced that
this broad-brush approach will be as effective as many of the
proponents think it will be, and I am sorry I cannot say to you
that community X has done this effectively. When I served with
the State Health Commissioner in Massachusetts, we did find that
small group discussions were very, very effective, and we had
those group discussions with emergency medical technicians, with
members of the gay community, with police officers, etc. We
found that that was effective, but whether or not that can be
used as a model for the rest of the country, I am not prepared to
make that recommendation.

CHAIRMAN WATKINS: Can you give me any indication of
where I might go? For example, on my desk in the office I have a
number of recommended educational plans from states. The State
of Maryland, for example, has put out a fairly large document
which tailors educational programs for those in school at a
certain level. What I haven’t seen are the other documents that
tailor educational programs to those not in school or not in the
workplace.

We have good programs for AIDS in the workplace in many
forward-thinking progressive businesses in the country. We have
been formally exchanging views with them, and they are excellent
in many cases, particularly several that come to mind in
California that have really been very progressive since the early
days and have been very effective in quelling the unwarranted
fears that go along with this, in preparing the workplace,
keeping the morale up and keeping the person on the job, being
sensitive to their care, keeping them in the group health
insurance systems and the like. We don’t see anything coming
across the board, it really is almost a one-on-one basis, like
the kind of work that Dr. Primm may be doing in trying to
intervene with IV drug abusers. But it doesn’t seem to be a
movement going to really focus heavily in that area.

I don’t see conferences being held that really focus on
that particular regime to try to come to grips with what those
educational strategies should be. It seems to me more on the
easy side. of it rather than on the difficult side of it, in terms
of any national conferences or coming together of the responsible
groups.

So, I am still kind of probing for some help to try to
lead us to some recommendations we need to make in that area
because I really do believe there needs to be a lot more work
done, and perhaps there is a role for the Federal Government to
play to inspire that kind of educational approach. I don’t know
that there is. I am not talking curriculum so much as I am how
do you get that ball rolling in a much more organized and
disciplined way?

43

 

 

 
 

DR. WALKER: I think there are groups that are working
on various approaches, at least testing various approaches. They
have not published their results in the open literature yet
because I think they are in the process of evaluating them. But
the behavioral sciences community, I know is working very, very
diligently, trying to come up with approaches to reaching various
groups and models to educating Group X versus Group Y and
educational programs in setting A versus setting B, the
occupational setting being one of those, but that is --

CHAIRMAN WATKINS: Would it be inappropriate for me to
ask you to go back and maybe within the next 30 days see if you
can sample the water across the nation from your contacts with
health through the Public Health Association and then write me a
letter, giving me a little follow-up on that discussion to see if
you might give me a better feel for how aggressive it is out
there in selected areas or certain areas where you think there
might be some merit to our taking a look a little more thoroughly
at those kinds of strategies? Is that something that would be
legitimate?

DR. WALKER: I would be most happy to do that. I will
respond within the 30-day time frame.

CHAIRMAN WATKINS: Dr. Scott, you mentioned you were
close in putting together the way in which to deal with the
health care provider’s possible need to know the sero status of
patients. Could you comment a little bit further on that?

 

DR. SCOTT: Yes, one of the major concerns that was
expressed by the front-line health care worker who works where
there is lots of blood going in lots of different directions, and
knows that there are a few people who have been infected, is what
do I do if I am exposed? And then somebody says, "My civil
rights tell me that I am not going to let you know what my status
is." That is really troubling. Now, our first approach to this
was to try to define whether the person’s blood to which the
health care worker was exposed was a person of high risk and that
the high-risk criteria would have to be folded into some sort of
epidemiologic and medical context. I then published some
proposed regulations to say what high risk was, namely, a high-
risk person would be considered a homosexual man, an IV drug
abuser, a person with multiple sexual partners etc., the list we
are all familiar with. Boy, oh boy, I really was cut off at the
knees. I was accused of legislative treachery and breaking
compacts and stuff, and I said, "What is the problem? How would
you do it? What criteria would you impose?" This is right where
we are in the discussion now. If, in fact, you are going to
impose criteria, the epidemiology of somebody’s background is
inherently part of that decision. I said, "Why don’t we do it
this way? Look, let us forget about those criteria and recognize
blood primarily as a dangerous substance in our society, and if

44

 

 

 
 

EE

you are exposed to blood, that is the driving force for
determining whether a person should be tested or not tested."

So, we are stepping away from saying, “Are you gay?
Are you a drug abuser? Have you had 37 different sexual partners
or whatever? " and saying, "If in the occupational health are a
setting you are exposed to a patient, needle stick, blood
splattering in the operating room or whatever, that would trigger
a request for the person whose blood was involved to be tested.
Most of the time the answer will be yes, but in the event that
the person says, "no", a statute would come into play which says
that this is a place where it is reasonable to override your
rights in the interests of the rights of the health care worker.
That would require a court order and whatnot, but that is our
approach now and it has gained the acceptance of our gay
community. It has gained the acceptance of our health care
community, and we are not just going to:say, "Health care." We
are saying, "All occupations." It, also, stands away from the
problem of intimate sexual exchange which is so personal. There
has been the worry that if something goes awry, and one party get
angry at the other, that they would say, "You have exposed me. I
demand that I take you to the director of health and be tested."
So, the personal transactions are out of this statute, and it
will be along the lines that I described. I think that this will
put into check that enormous anxiety that the health care worker
would be left hanging out there without any protection. I hope I
have made it clear.

 

CHAIRMAN WATKINS: Where do you stand right now in
debating that particular statute in the legislature?

DR. SCOTT: It will be introduced this Friday into the
legislative session. It has been vigorously debated in a large
subcommittee involving all the constituencies of the AIDS
advisory group. Then next week we are going to have the full
council which is made up of 40 people further debate it. Then it
will come up for legislative hearing. I have a sense it will
pass. I mean, the big support is there.

CHAIRMAN WATKINS: Do you have any sense of where that.
kind of approach would have similar precedent nationally through
the state territorial health officers perhaps? In other words,
where do you stand? Are you out in front in the nation or are
you doing something that is similar to a variety of other
states, and if so, do you know how you stand relative to other
states on this issue?

DR. SCOTT: This is so fresh in terms of our
formulation that I haven’t had a chance to share this with my
colleagues like Kris Gebbie. You might know, Kris, whether other
people have thought about this approach or not. I am not aware
actually.

45

 

 

 
 

 

MRS. GEBBIE: I am not aware of a specific statute such
as you describe. I think that the process you describe has been
under debate in several states, and I had a follow-up question
actually for you whether in your state the reciprocal side has
come into the debate. That is, in hospitals in Oregon that have
debated the subject, the question has been raised, well, if you
as a health care worker have the right to override the patient’s
interest in testing and say, I need to know because you just
exposed me." Does the patient likewise have a right to say to
the health care worker who had just bled from a needle stick onto
a patient, "I have a right to know your HIV status"? There ought
to be a mechanism for communication both ways.

DR. SCOTT: No matter which way, if there is exposure
to blood, that is the beginning of the whole discussion. Another
part of it is that the health care worker who is exposed also has
to agree to an HIV test, and that is logical for any number of
workers’ compensation issues and so forth. If the say that they
won’t play the game, forget it. So, that is part of the statute.

MRS. GEBBIE: I think this may be a leading edge debate
in Rhode Island in the sense of having drawn on some of the ideas
that had been discussed as policy in other places but moving it
into statute and into fuller debate, and I think we could learn.

CHAIRMAN WATKINS: Let me ask, then, Ms. Gebbie, if you
would pick up the burden of responsibility for the Commission to
take a look at that across the country from your contacts, state
and territorial health officers and see just where that sits,
because it is a great area of concern right now, including such
things as how do you treat someone? Is AZT, the heavy doses, for
example, a protocol that might be utilized in such case to stem
the transition of the virus into antibodies? There is some hope
that there might be some sort of a procedure, protocol that could
be followed under extreme conditions of health care provider
exposure to infection. So, it just caught my attention when you
where talking about it. It is something we had not heard before,
and it seem to me within that, particularly if you are building
something that has consensus within the state, that sounds as
though it is somewhat precedent setting.

We appreciate very much both of you coming before the
panel today. It has been helpful to us to have the debate.
Thank you very much. There may be follow-up questions from the
Commission to each of you that we would ask in writing. So, the
dialogue should remain open for the remainder of the life of the
Commission. Thank you very much, and we will recess now for
lunch for the Commission.

(Thereupon, at 11:30 a.m., a recess was taken until
12:30 p.m., the same day.)

46

 

 

 
 

 

|. APTERNOON SESSION

“~* “CHATRMAN WATKINS: The first panel this afternoon will
consist of Dr. James O. Mason, Director, Centers for Disease
Control, Assistant Surgeon General; Dr. Lloyd Novick, Director .
for Community Health, New York State Department of Health; Dr.
Martin P. Wasserman, Director, Montgomery County Health
Department; Dr. Lonnie Edwards, Health Commissioner, Chicago
Department of Health, Chicago, Illinois.

The topic this afternoon will be the role of federal,
state and local public health organizations in prevention efforts
surrounding an epidemic.

Our procedure, panel members, will be to ask each of
you to give your brief statements to the Commission first, and we
will start first with Dr. Mason and move across the table, and
then we will open the panel to questions from the Commissioners.
So, with that, I would like Dr. Mason to commence.

DR. MASON: Thank you very much, Mr. Chairman and
members of the Commission. I am happy to respond to the topic,
the role of the federal, state and local public health
organizations in prevention efforts surrounding an epidemic.

Our nation’s public health system is built ona
voluntary partnership of public and private health organizations,
the former including local, state and Federal Government
agencies. This structure, characterized by interdependence and
cooperation has as its foundation individual physicians, local
clinics and community hospitals.

In our country, the heart of public health action is at
the community level. Preventive services are most effectively
delivered at the local level. It is at the local level that
illnesses are diagnosed and treated, and notifiable illnesses of
public health importance are reported for national surveillance
purposes. '
The word "health" does not appear in our Constitution.
The Tenth Amendment to that document states, and I quote, powers
not delegated to the United States by the Constitution nor
prohibited by it to the states are reserved to the states
respectively or to the people, end quote.

The public Health Service Act states, and I quote, the
Secretary (Health and Human Services) shall encourage, cooperate
with and render assistance or other appropriate public
authorities and promote the coordination of research,
investigations, experiments, demonstration and studies related to
the causes, diagnoses, treatment, control and prevention of
physical and mental disease, end of quote.

47

 

 
 

 

At the federal level, the Secretary has general
statutory authority to enact regulations to prevent the spread of
diseases across state or national borders. However, the Federal
Government has traditionally relied on the states, acting under
their separate authority, to initiate appropriate action to
control epidemic and other communicable diseases. Let me tell
you how the system works within this framework. Each state has a
commissioner or director of health and a state epidemiologist.
Their jobs include statewide reporting of’ the occurrence of
diseases. This is called surveillance. The states respond to
county or city requests for assistance. They provide CDC with
disease data which is published in the Morbidity and Mortality
Weekly Report to share national data with everyone interested.
States request assistance from CDC when it is required.

Let me provide an example. You may remember the
Legionnaire’s disease epidemic in summer 1976. It started as a
widespread problem in Pennsylvania, and the local health
departments called the state epidemiologist for assistance. Two
CDC Epidemic Intelligence Service officers on duty in
Pennsylvania started on the problem. Later that same afternoon
an official request for epidemic aid assistance came from the
Pennsylvania state epidemiologist to CDC. The Director of cDC
called an evening staff meeting. A senior investigator was
identified and relieved of ongoing responsibilities, and
additional officers were sent to Pennsylvania the following
morning. That investigation involved local health department
personnel, local doctors, hospital assistance, state assistance
and CDC assistance and backup, both epidemiologic and laboratory.
As information about the outbreak and its spread became
available, CDC kept all other state health departments informed.
This was a classic example of how the public health is protected
in times of disease epidemic.

, i
To finish the Legionnaire’s disease story, by January
1977, scientists in CDC laboratories had discovered the cause of
the illness. Prevention measures are now well known, and the
states handle most outbreaks of Legionnaire’s disease without
assistance from CDC.

Why does this system work to control the spread of
disease? It works on the basis of mutual trust and cooperation
that started 42 years ago with the establishment of CDC to
control malaria in the United States. To do that CDC worked
closely with the state health department laboratories for
confirmation of diagnosis, with state epidemiologists for disease
follow-up and in providing training for state and local health
department personnel in disease control efforts.

Later we worked with cities and states in the 1950’s
and 1960’s as the United States launched nationwide attacks on

48

 

 
 

 

polio. By 1966, CDC initiated a national program to control
childhood diseases which could be prevented by immunization. The
National Vaccination Assistance Act provides federal dollars to
state and local health departments through CDC’s Immunization
Division. CDC monitors disease trends nationally and provides
expertise in terms of professional public health administrators,
medical epidemiologists and laboratory assistance. We receive
the assistance of voluntary health groups and state medical
society auxiliaries to augment local immunization initiatives.

In 22 years through these cooperative efforts vaccine preventable
diseases of children have been reduced to less than 2 percent of
what they were in 1965.

How does all this fit into the picture of AIDS today?
Although the AIDS epidemic has and will continue to be
protracted, the response to the epidemic and the interactions
among federal, state and local health agencies has been similar
in many ways to most other epidemics.

In retrospect, isolated cases of the disease that is
now recognized as AIDS began to occur in a number of cities, at
least as early as the 1970’s. In 1981, the first cluster of five
cases in Los Angeles was brought to the attention of the local
health department. After pursuing the investigation with the
assistance of a CDC EIS officer assigned to the county health
department, personnel from the health department submitted
information describing the Los Angeles cluster to CDC. This was
published in the MMWR on June 5, 1981, as the first report of
this new epidemic. CDC contacted other health departments and
physicians around the country to obtain information about other
cases that might have occurred. The second MMWR report was
published a month later. The third published in August 1981,
reported a total of 108 cases. These reports represented a
concerted response by the nation’s physicians and local and state
health officials. The efforts continued over the next 12 months
to document the epidemic trends and to conduct epidemiological
and laboratory investigations.

In September 1982, the first cooperative agreement was
established to provide New York City, which had reported almost
half the cases, with federal assistance to enhance their
surveillance programs.

In Fiscal Year 1983, additional cooperative agreements
were signed with the states and cities that had been most heavily
affected by AIDS, and additional. CDC personnel were assigned to
assist at the local level.

In 1983, CDC worked closely with this Council of State
and Territorial Epidemiologists to coordinate passage of a
resolution at their annual meeting that AIDS be made a reportable
condition. AIDS is now a national reportable condition in all

49

 
 

 

states and territories. Today funds from CDC are going to 37
states, cities or territories to conduct surveillance and
prevention funds available to all reporting entities. Funds are,
also, being made available to expand serosurveillance of HIV
infection. Funds are being provided to conduct epidemiologic
studies, to fund counseling and testing centers and to develop
comprehensive prevention programs at the local level.

I have distributed for your reference copies of a
booklet titled Centers for Disease Control AIDS Prevention
Activities FY 1987, which summarizes CDC’s activities relating to
AIDS during Fiscal Year 1987. CDC intends to maintain its
leadership role in national AIDS surveillance, epidemiology and
laboratory studies. We will continue to use our traditional ties
to the state and local health departments as is illustrated on
Pages 6 through 17 of the Summary.

Our prevention efforts will include education at all
levels, illustrated by page 20 and 21 and pages 34 through 37.
We will continue to emphasize risk reduction efforts which
are illustrated on pages 22 through 33 of the summary. This
concludes my testimony. I will be happy to answer any question
you or members of the Commission might have.

CHAIRMAN WATKINS: Thank you, Dr. Mason. Dr. Novick?

DR. NOVICK: Thank you, Mr. Chairman. New York State
has over 14,000 cases of AIDS. In addition in New York State
about one-third of those cases, 35 percent are related to IV drug
abuse as a factor. We have been increasing our preventive
activities. Part of that increase has been learning more about
the problem through our seroprevalence studies. I would like to
show you several slides which will illustrate the extent of the
problem disclosed by the studies and then briefly discuss some of
the preventive measures that we are putting in place.

This slides shows the results from our newborn testing.
This is testing on available blood, and this shows the results of
the first 52,000 consecutive newborns since last November that
have been tested and shows a rate in Upstate New York of almost 2
in 1,000. A much higher rate is found in New York City.
(approximately 1-1/2 percent)

Just quickly, these bloods were taken from infants, but
what they showed is maternal infection. The infants themselves
may or may not eventually be shown to be infected, and what this
slide shows is a very striking increase in the percent positives
as the maternal age increases which has implications for our
preventive programs. This is a map of New York City. This
shows the zip codes in which we have found at lease one positive
newborn for antibodies to this virus.

50

 
 

 

This shows only the highest areas, those of more than 2
percent, and this is a similar slide showing neighborhoods with
more than 2 percent.

The next map shows the gradations, with the heavy
white color showing areas of more than 2 percent. Some of those
areas are more than 3 percent or more than 4 percent.

The next slide that I will show, is very similar in
geographic distribution to this slide but does not show HIV
prevalence but rather a measure of IV drug abuse. I guess that
is hard to see, but the red stands out.

Very briefly, six of these seroprevalence studies are
of different population groups. It shows what the challenge is
with respect to prevention.

I will highlight some of our major preventive
initiatives. We have worked with the Department of Education.
We have a mandated AIDS prevention education program in New York
State. It is in the phase of training teachers. It will start
in the next school year. We have a large media program. We have
been engaged in planning efforts with the Cooperative Extension
Service to put education through that service to adults and
parents in a number of counties in New York State.

You have seen a health problem that is related to drug
use, and your own Commission has called attention to this. We
have outreach sites in New York City where we counsel, provide
education and referral to IV drug users. In addition, we have
efforts to reach physicians, especially all physicians who treat
women of childbearing age. This includes women who are
contemplating pregnancy in New York State, encouraging them to
(with consent) receive counseling and testing.

With respect to prenatal care and family planning that
is state subsidized, we are requiring through contract amendment
that all of these facilities provide counseling and testing on
site to women who elect such counseling after receiving
information.

We are going though a large training program, training
staff at all these sites in counseling, and we will provide
reimbursement for the counseling and testing process once this is
under way, and we expect it to be under way in the next 30 to 45
days.

In addition, in the areas that you have seen,
highlighted on the map, we have planned to hire community health
workers to train them not only with respect to HIV related
disorders but, also, with respect to prenatal care because the

51

 

 
 

 

two run hand in hand in those areas in which we have demonstrated
that there is an increased HIV prevalence.

In addition to that, as your own Commission has pointed
our, we recognize the increased need for drug treatment programs.
There are currently about 45,000 drug treatment slots in New York
State. Methadone slots have been increased by about 5,000 and
drug-free slots by as much as 9,000.

I will conclude my remarks by saying that we are both
trying to get a better idea of the magnitude of the problem,
where it is by looking not solely at case reports but looking at
actual evidence of HIV infection. We are combining a community-
wide effort in terms of prevention, using education and the media
with more specific attempts to somehow break the cycle of
infection in those areas which are shown to have a problem
according to our seroprevalence efforts.

CHAIRMAN WATKINS: Thank you, Dr. Novick. Dr.
Wasserman?

DR. WASSERMAN: Thank you, Mr. Chairman, members of the
Commission. I would like to speak as a representative of
virtually any county USA. I happen to be from Montgomery \
County, and I would like to tell you how we are dealing with this
epidemic some 20 minutes away from where we sit right now,
Montgomery County, Maryland.

I am, also, an elected official for the National
Association of Counties. I believe that the kind of description
that I will give you as to what we have done in Montgomery County
is very similar to that being done by all local health officials
in suburban metropolitan areas.

First of all, some statistics. The Metropolitan
Washington area is the fifth largest area in the country. As of
mid-February, there were 1721 diagnosed cases of AIDS, with 986
deaths. In our own community, some 650,000 people just to the
north of Washington, we have had 159 cases with 90 deaths since
our first case report in February 1983.

Our statistics differ somewhat from that of Maryland
although not from the national data. We have had 24 percent of
our cases identified in the black population. The State of
Maryland has 51 percent in black population; 90 percent of our
patients are males; 4.3 percent Hispanics, and surprisingly 23
percent of Montgomery County residents who have AIDS are over the
age of 50. Maryland has 14 percent. As we looked at those data,
we understood that a number of our older people got them from
transfusion reactions.

52

 

 
 

 

As I looked through the history of how our community
dealt with this problem since 1983, I noticed that it fell into
about five or six specific categories. First of all, after our
first case was diagnosed in 1983, after our surveillance was
heightened, as you heard from Dr. Mason with reported cases in
MMWR as early as 1981, from August through spring 1984 through,
up until the spring of 1985, or over an 18-month period we began
to educate and form an information plan within the community and
began to target the predominantly gay community. Also, the
health department collaborated with the local medical society in
presenting information to the public at large.

In the spring of 1985, we began anonymous antibody
testing at our STD clinic site. Since that time, we have
performed more than 8,000 tests, the largest number affiliated
with the health department in the State of Maryland, and have
done more than 25,000 counseling sessions.

From August 1985 through January 1986, the community
went through what I will call a major briefing session of all
government agencies with the health director talking to the
council, the county executive and our chief administrative
officer, speaking then to county department heads and eventually
developing under his leadership county policy through an
intergovernmental task force and also developing policy in
concert with CDC standards and recommendations through our school
board in January 1986.

From 1986 until the spring of 1987, we honed in or our
message, improved that message and expanded general community
awareness. We began to work with local organizations, including
HERO in Baltimore, Health Education Research Organization and
Whitman Walker in Washington, D.C.

Montgomery County is in kind of a precarious
situation. We don’t know whether we relate to Washington or
Baltimore, to the Metropolitan Washington area or to the State of
Maryland sometimes. :

Since 1987, the spring, we have tried to desensitize
our community by frequently speaking before boards and
commissions generally reaching into my pocket and picking out
what I have now become somewhat notorious for, a variety of
condoms in a variety of colors. The first time I spoke to our
school board, eyes rolled all over the community. At this point
now in speaking before the county council and others, it has
become expected, and I think our community is somewhat
desensitized towards understanding some of the modes of
transmission and towards ways of stopping that transmission.

We have, also, gone through a process of comprehensive
community planning and community services development. Over the

53

 

 
 

 

summer our Health Planning Commission set up a task force for
community needs assessment and developed a series of
recommendations. On January 20, this past year, just a month
ago, we sat down and invited more than 300 community
participants to our AIDS challenge, and I have some packets for
some of you and can provide them to all of you.

At that point, we were looking at developing a 5-year
plan. Several workshops were established including acute and
chronic treatment services, public safety, AIDS in the workplace,
information, education and training, home and community-based
services, housing and funding levels.

The report should be out within the next 4 to 6 weeks.
As we became more sophisticated, we began to target the high-risk
groups. We began to develop contracts to approach minorities, IV
drug abusers and those in prisons. We have made a concerted
effort to involve the business community. Of those 325 people
who attended the conference, 89 represented the business
community in Montgomery County. We have actively pursued
relationships with the Chamber of Commerce. In fact, the
particular AIDS challenge conference was sponsored by the Health
Department, the Health Planning Commission and our Office of
Economic Development.

Speaking as a local health official, what I would like
you all to recognize is the need for diversity in approaches
amongst various localities. We need to be able to develop
targeted approaches based on specific community problems. As I
mentioned to you, our population with AIDS is older, and we don’t
have the same mix of minorities as does the State of Maryland.

In San Francisco the gay population is the most
seriously affected and has strong political influence in that
community. In New York city there is a high rate, as you have
just heard, of intravenous drug abuse, and in that community the
Mayor is permitting the distribution of clean needles. In the
Metropolitan Washington community we were able to distribute, at
least in Washington, D.C., Clorox for drug abusers. That has not
gone to the suburbs as of yet. Colorado, a more conservative
state, has permitted a more traditional public health approach of
contact tracing which I would consider more conservative in line
with some of the approaches that I would like to see developed in
some of the other communities, but it is not right for all areas
of this country.

Just to look at the diversity in the Washington
Metropolitan area, we can look at some recent developments of
children with AIDS infections and their ability to get into the
school system. In Fairfax County, a child was not admitted in
the school system which created a controversy and required court
action in order to bring that child into the systen.

54

 

 
 

 

You will be hearing from Dr. John Grant from Caroline
County in our state of Maryland in Nashville as to the success
that they had in integrating the student immediately into the
classroom setting. In Prince William County I think they have
had two separate instances, one where the school board excluded
and then after learning how better to deal with the situation the
child was integrated without any difficulty.

I think we need to maintain both anonymous and
confidential test sites. I think we need to maintain continued
funding for outreach counseling, materials preparation ina
variety of languages and the development of a regional and
national clearinghouse. I think we need more funding for public
service announcements that are locally specific and that are
sensitive to the needs of various minority communities and local
diversity.

We need to sensitize the public to the disease issues
so that we might minimize the panic issues, and when I speak to
the community I generally focus on the two-pronged approach. One
is the very difficult medical problem that we have, but the other
one that is preventing us around the public health table from
providing the kinds of services that we need to, is the hysteria
in the community that sometimes has been fueled by the media, so
that in addition we need to continue to develop strategies to
better work with the media on public health issues.

There are two or three other points that I would
consider controversial that we are beginning to wrestle with
within our own community. At various times when I have had
opportunities to represent the National Association of County
Officials on various policy-formulating boards outside of my
community these have come up. I think we need to look at the
issue of duty to warn. I believe later on this afternoon we will
talk about partner notification. I thifk§ you need to go one step
farther than mere partner notification and expand that. We are
wrestling with that with our own Governor’s Council on AIDS, and
I think we either need to at least adopt a permission to warn
posture or look at the duty to warn, and we might be able to
discuss more in the question and answer period.

I am very concerned about public safety worker
protections. In this locality and in my previous job as local
health official in Arlington County, it was very difficult to get
to those people in the front lines: police officers who have been
splashed with blood, rescue workers in the field, and correction
officers who are affected by this disease. When they are
exposed, and there is a very clear-cut definition of what an
exposure is scientifically, they have concerns, and I think we
need to address those concerns, perhaps even by mandatory testing
of those people who expose an individual in the line of their

55

 

 
 

 

performance of public responsibilities, after, of course, we have
tried all of the appropriate methods of trying to get voluntary
compliance, if nothing else but to ease the mind in anxieties,
reduce the anxieties of the public safety worker, recognizing
that we would still have to continue testing that worker as well.

Finally, as I have stated, in our community, we have
involved the business community. That sector, I -think, is,
extremely critical toward expanding the general knowledge and
support for these activities within the community.

I would also, like to conclude by recognizing that
there is a large partnership, a general partnership,: as you have
heard, between the Federal Government, state government and local
governments, and we need to have the funding; we need to have the
communication; we need to have continued support, but recognizing
that in the variety of communities there are throughout these
United States there will be a diversity of approaches, and that
will required both analysis and evaluation of all of the
activities that are going on throughout the United States. Thank
you.

CHAIRMAN WATKINS: Thank you very much, Dr. Wasserman.
Dr. Edwards?

DR. EDWARDS: Thank you, Mr. Chairman and members of
the Commission. As Commission of Health for the city of Chicago
and representing the United States Conference of Local Health
Officers, I am, indeed, pleased to have the opportunity to come
before you today to provide a perspective from the local public
health department for one of our nation’s largest cities
addressing this problems. I have also provided written testimony
which I submit for your consideration.

As a background to my comments, let me tell you about
Chicago’s situation. Chicago is that nation’s third largest
metropolitan area but ranks eight in the number of AIDS cases
reported. To date, slightly over 1,100 cases of AIDS have been
reported in Chicago since the first case was detected in 1981.
This compares to over 13,000 cases in New York and nearly 5,000
each in Los Angeles and San Francisco. The scope and growth of
AIDS in Chicago appears to be approximately 2 years behind that
of these major coastal cities. This 2-year time lag, relatively
few number of cases and the experience of other cities has
allowed Chicago to talk a more deliberate and less crisis-
oriented approach in addressing the AIDS epidemic. We have
emphasized the development of policy to guide a long-range
approach along with short-term action-oriented initiatives.

While the public health department is taking a
leadership role, the major focus has been to build the capacity
within community-based agencies to address this problem as it
exists at the community level. Chicago’s approach to AIDS has

56

 

 
 

|

developed in an evolutionary fashion to take on the focus and
direction it has today. This approach has several components.
Prevention through intensive and targeted public education is the
backbone of AIDS efforts in Chicago. This is augmented by an
aggressive surveillance and monitoring system, and a limited but
responsive HIV antibody testing and counseling capacity. As I
noted a central feature of our approach is to act through and in
conjunction with a network of community-based agencies which
operate within those communities most affected by AIDS. These
agencies are key in delivering the risk reduction health
education message. Community-based agencies are also the source
of many of the outpatient-health care and special support and
residential services needed by persons with AIDS. More
traditional medical support, both inpatient and outpatient, is
currently being provided within the existing health care system.

The major obstacles that we face at the local level
include insufficient resources and the type of population groups
that are most vulnerable. Societal prejudices and preconceived
notions about why the disease has taken place and what should be
done about it is a third obstacle.

Finally, the obstacles presented by the disease itself
you have heard before and I won’t dwell on them. Quite simply,
it is a disease that we do not completely understand. It is not
easily diagnosed nor easily routinely testable. There is no
cure. There is no vaccine. We have little in the way of
effective treatment or therapy. It is seen as a scourge from
the public health past which should not have occurred in the 20th
century, so we thought these conditions alone give rise to public
fear and public questions of confidence in the medical and public
health professions.

 

That the disease affects population groups not
considered mainstream, that it is transmitted by sexual behavior
or by IV drug use only makes more difficult our job of erasing
judgmental overtones. While our earlier fears that the disease
would spread rapidly beyond known high-risk groups into the
general population have not been realized, we will increasingly
be seeing greater number of cases among women and among children
as the proportion of IV drug use transmitted HIV infection
increases.

Our prejudices regarding those of differing sexual
preferences, of different life styles and those who use drugs
have gotten in the way of effectively coping with this problem.
We have seen this reflected in a flurry of legislation enacted by
states across the country which has been often contrary to public
health principles, and has wasted resources. These ineffective
approaches which largely have been driven by attempts to allay
public fears, and in many cases the legislation has created more
obstacles than it has overcome.

57

 

 
 

Resource obstacles are simply that we as a nation have
not faced up to the massive expenditures that treating the
increasing number of AIDS cases will entail. We need to adjust
our health care financing mechanisms or create new ones to
provide the comprehensive and expensive care that persons with
AIDS will need. That the high-risk groups are homosexuals and
drug users, and that we have prejudices about how this disease
should be addressed makes resource allocation decisions even more
agifficult. The vast amount of money that has been allocated by
the federal government has been allocated for research, and
indeed, this is important. It is felt, however, that research is
being conducted at the expense of research into other public
health areas.

Local public health departments have labored under
these obstacles, and it needs to be remembered that while AIDS
represents a public health challenge of enormous proportions, it
is more than a problem solely for public health departments,
especially those at the local level. AIDS affects more people
than just a limited number of clearly identified population
groups, and while there are high-risk behaviors, AIDS must be
seen as a public disease affecting all people for which society
at large must be responsible. It has become too easy for us as a
society to see the disease solely in terms of homosexuals or drug
users or other groups which we don’t feel particularly
comfortable with and then to enact reactive laws to deal with
these groups.

Addressing AIDS must involve a response from all levels
of our society: at the local, at the state, as well as the
federal level. Responsibility cannot be shifted solely to the
medical or public health community. In absence of a true medical
miracle, AIDS will be with us for a long, long time. And while
Americans have come to expect medical miracles in the past
quarter century, such a wait-and-see attitude will likely see us
both disappointed and unprepared for reality.

If the focus then is not just on public health
departments but on all elements of our society, we must attempt
to gain direct community involvement of agencies and institutions
at the grassroots level. Our greatest weapon is indeed,
prevention-oriented eduction to change behavior, and this weapon
cannot be applied in a top-down fashion. It must emanate from
respected sources within the community. Thus, we must empower as
many of our community leaders and local organizations as possible
to become involved and take an active role in fighting the
disease.

The federal government has a crucial role to play. The
federal government can be instrumental in overcoming every one of
the obstacles that I have mentioned. First, we need leadership

58

 

 
 

 

at the national level in combatting AIDS. AIDS must be seen as a
threat to the entire nation, not just a threat to certain large
cities or certain population groups.

. AIDS must take on a national concern. This threat lies
not just in the spread of the disease but also in reacting to it
in a fearful and negative way. Thus, the federal government must
ensure that all of our citizens are protected from disease and
from discrimination.

National guidelines are needed which are respected by
state and local bodies. We find that local legislators are as
perplexed by AIDS as the general public, and in the absence of
guidance will reach for their own solutions, often responding to
an atmosphere of public fear and a sense of urgency for some type
of action. Most appropriately they should turn to local public
health departments for expertise needed to guide them. However,
local public health departments need the support of the national
policy and an overall sense of direction at the national level if
the weight of their expertise is to be sufficient to counter
other pressures.

In practical terms, federal government can do several
things. Federal civil rights and anti-discrimination laws should
be appropriately amended to protect those who have this disease
or who otherwise may be considered at risk. Where new
legislation is not needed, administrative interpretation of
existing laws through regulation need to make clear that it is
the national policy to prohibit discrimination of any kind
against persons with AIDS or at risk of contracting AIDS.

Establishing that expertise and confidence in local
public health departments would be greatly enhanced if they would
be recognized by the federal government as the local source of
expertise. State legislators should be encouraged to turn to
their state and local public health departments as a source of
guidance. One method of accomplishing this would be to
specifically fund an educational program for state and local
legislators that will be conducted by public health departments.
These workshops would provide us the opportunity to demonstrate
our expertise and to get our message across on a one-to-one
basis.

The federal government must also adopt more effective
drug abuse policies as it is through intravenous drug use that
AIDS will more than likely spread in the future and while
emphasis on strict law enforcement is necessary, we must see drug
abuse as more than an evil in itself, but as a symptom of deeply-
rooted problems with socioeconomic and psycho-social causes. We
cannot ignore those problems, as unpopular as they may be. I do
want you to know that we must find ways to improve the
socioeconomic conditions within the inner cities of our country,

59

 

 

 
 

 

and we must shake the strangle hold that drugs have on our young
people. This is a long-term solution and might very well be an
expensive one.

There are other things that we can do right now. One
is to ensure that there is an adequate number of drug treatment
facilities available especially for low-income citizens, those
most likely to be the victims of drug abuse. It is appalling
that so few of these treatment facilities exist across the
country. In Chicago, my city, there is only one publicly funded,
publicly operated inpatient drug abuse treatment center for
adolescents, and that has a capacity of only 20 beds in a city
where thousands of teens could benefit from such a service, and
there are only 20 slots available. The reason is quite clear and
plain. There simply isn’t the money, and while the federal
government has spent tens of millions on the law enforcement
aspects of drug abuse, the dollars for treatment, indeed, have
been inadequate.

I also cannot believe that in a country where
advertising and the media are so successful in persuading
consumers to purchase products of questionable value, the best we
can do to persuade our young to avoid destruction of their lives
is to say, "Say No to Drugs." It rings hollow by comparison. If
we are to reach them, we must reach their consciousness and
seriously address their problems of frustration, hopelessness and
confusion that the young face in growing up in today’s world.

The same dedication and expertise that is used to sell this
year’s newest line of automobiles or fashion design or whatever
trinket the commercial world latches onto, must also be used to
reach our young, to bring hope. Introducing sophisticated
behavioral research techniques into these means of persuasion
requires funding and sponsorship. Their critical importance
suggests that the federal government must take the lead, and
until we are willing to improve the socioeconomic and the psycho-
social conditions in which our young mature, we must provide them
with the means to resist the negative forces and not become
lifelong victims.

The schools must play a central role, and this is where
there is greatest contact with our youth. Schools, too, are
looking for guidance in dealing with AIDS, and while eduction in
this country has been largely a local concern, a national problem
requires national leadership, and the federal government needs to
insure that minimum standards for health education are adopted
nationwide. Health education should, also, include sex
education. Thank you very much.

CHAIRMAN WATKINS: Thank you, Dr. Edwards. Mr.
Creedon?

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MR. CREEDON: I have one question first with respect to
education. In this booklet on AIDS which was published last year
sometime, there are two tasks that were identified, 2.31 and 2.32
on Page 26. One, the task is to work with local education
departments and other agencies that serve youth in cities with
the highest incidence of AIDS to ensure that school-age
populations who attend and who do not attend schools or colleges
in the area receive effective education about AIDS 2.3.2. which
is along the same lines says, "Work with the education
departments and other agencies that serve youth in three cities
and one state with the highest incidence of AIDS," again, with
this educational effort being directed at both those who attend
school and those who are of school age but are not in school."

The collaborating organizations are identified with
local and state education and health departments and other
agencies, and the beginning date is identified as September 1987.
I guess the question I have is whether these two tasks have
really started. How far along the line they are? What are the
results so far? Is what is being done adequate or do other
things need to be done? I assume that these were pilots in a way
and that they are limited to specific cities or states, and
whether this Commission which is concerned in our educational
review about specifically reaching the young adults who are of
school age, not adults, young people who are of school age but
who are not in the schools getting the benefit of a school
curriculum; how do you reach those; what is happening now; what
in addition needs to be done, and some of these will be drug
users, and what specifically is being done to reach then,
especially if they are student dropouts who may not be literate?

DR. MASON: I will try to address that question.
Please go to Page 34 in the CDC AIDS Preventive Activities
Booklet. While you are looking that up, let me say that we
believe that information about AIDS appropriate for age should be
included in a comprehensive school health education curriculum
for all children. By comprehensive health education I mean
kindergarten through 12th grade, comprehensive health education
doesn’t mean talking about condoms in first grade or second
grade, however if there is an infected child in that class, there
ought to be instructions appropriate for age as to how the
disease is and is not transmitted. I would leave the content of
message up to the local school board. But we do believe that
that comprehensive health education should be provided to all of
the nation’s children.

Turning to Page 34 in the booklet, these activities
already happened last fiscal year. You will see that a total of
$11 million was included in our first grants for school AIDS
education. Its distribution included, 51 percent to national
activities and 49 percent to state and local activities.

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If you will turn the page, you see that we awarded
about $2.6 million to 15 state departments of education, $2
million to 12 local educational agencies, and about $700,000 to
two states and one city for training and operation of
demonstration centers. A total of $1.8 million was provided to
15 national organizations for assistance to schools across the
national to deliver effective AIDS education, particularly to
minority youth and those not in school. Finally, we developed
and distributed "Guidelines for Effective School Health Education
to Prevent the Spread of AIDS." One million copies of these
guidelines will be distributed in FY 1988.

Page 36 shows the School Health Education Fund awards
by states and cities. During this 1988 fiscal year, we will
provide grants through an augmentation in those funds to every
state educational department and many cities. Every state
department of education will have money, and cities with the
highest AIDS prevalence, will also receive direct grants.

It takes time to bring up these comprehensive school
health programs with specific AIDS messages. Page 37 shows what
activities are being supported through the money awarded in FY
1987. Many of these grants are for outreach beyond those who
attend school so that we can get to the dropout who is more
likely to be involved in IV drug abuse.

MR. CREEDON: What specifically is being done for the
dropout, for the ones who are not in school?

DR. MASON: These grants were specifically for the
purpose of developing programs to attempt to get to our of school
youth.

MR. CREEDON: At the local level?
DR. MASON: At the local level.

MR. CREEDON: There are no recommended guidelines or
suggestions coming out of CDC itself?

DR. MASON: We have recommended approaches, but these
funds are for demonstrations. We need to get down to the local
area and find out how you get school dropouts. We don’t have all
the answers yet.

MR. CREEDON: Then I guess I would ask the other
members of the panel whether they have done anything pursuant to
these federal grant along the lines of trying to reach the
children who are not in school or who are the IV drug users.

DR. MASON: I will just comment that these funds got
out during the latter part of FY 19878.

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MR. CREEDON: So, the-money ‘is not out there yet.

DR. MASON: It is there now, but most of the grantee
are early in their program development.
\
- MR. CREEDON: It says, "Conduct programs for out-of-
school youth," and that seems to cover many of the states.

‘Would you comment on that Dr. Novick?

DR. NOVICK: Yes, New York State is one of the states
that has gotten the grants that Dr. Mason has talked about,
actually two of the grants, one in New York City one in New York
State. New York has made good progress in developing a statewide
program, K through 12. I think on the issue of dropouts,
however, there is quite a bit of difficulty in knowing how to
approach dropouts. I worked closely with that effort, and I am
not aware of definitive plans yet to reach the dropouts. The
amount of money, also, that states get, while it totals in
several millions, it is not enough to provide for these
educational programs on a statewide basis.

Our own department of health has provided some funding
for the training, but even so more resources are needed, and
there is not, I don’t think there is a clear approach, certainly
not in New York State to the problem that you are asking about.

DR. WASSERMAN: Perhaps I can tell you that first of
all I think that what has been stated is that it is very
difficult to reach that hard-core dropout population. Last
spring was really the first time we even had a concerted effort
in the schools where we worked with out school health program and
were able to get the schools to have a major program to educate
staff and children with permission.

This Thursday the state department of education and
local schools, together with the state health department and
local health officials will be meeting to develop an augmented
plan for health, for AIDS education within the school system to
deal with high-risk youth. What we did this particular year was
to take some money and to work through the Whitman Walker Clinic
on a contract, we brought an individual in who is working in the
jails, on the streets, working with the recreation program to try
to identify networks to be able to work and find people who are
not in the traditional school settings and then educate them on a
one-to-one basis. It is a very difficult challenging job just
being heard, just being accepted. He happens to be a minority
member himself, and so he has been more effective than the
traditional approach that we have taken previous to that.

MR. CREEDON: Dr. Edward?

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DR. EDWARDS: We have found that you certainly cannot
use traditional methods of getting to these youth, and this is
true as a whole in this disease. What we have done is to work
with the grassroots organizations in communities that have
developed confidence with these dropouts and can call them
together within homes, within other social institutions and can
talk with them and convince then.

We feel that it is impossible to talk to this group
unless you empower grassroots community organizations with
reputation to gather their confidence according to thier
methodologies.

MR. CREEDON: Thank you. The other question I have is
more on the prevention side, and Dr. Mason, you indicated that
sometime back, I guess in the early eighties AIDS was identified
aS a reportable condition to CDC. I wonder whether it is
feasible and desirable to have HIV seropositivity as a reportable
condition. You know, one of the results of our hearings has been
that nobody really seems to know how many people are out there
with the virus. There are different estimates, and some of the
estimates might be good, but they vary considerably, and looking
at this as a public health matter, would it be desirable and
feasible to have HIV status reported rather than AIDS status?

DR. MASON: My own personal belief is that we ought to
be working toward what I call normalization of AIDS or making
AIDS like other epidemic diseases as rapidly as possible. By
normalization I don’t mean business as usual. But using the
time-honored techniques. We generally support, as long as one
can guarantee confidentiality, that states and local governments
develop a system of reporting not just cases but infections.

This is a development that will have to move at a local community
and state basis as they arrive at levels of confidentiality that
they feel will permit reporting on infections.

In talking about comprehensive reporting we have no
problems with the ability of the public health system to guard
confidentiality. Seropositivity reporting involves physicians,
laboratories, and hospitals. I am not sure that in all
communities we have the mechanism in place to guard the
confidentiality at all levels.

We ought to begin, as a first step, with separating
names from reports so that we have numbers on anonymous type of
reporting. For example, we we never ask for the reporting names
at the federal level because it is of no use to us to know a
person’s name. We do need to know age, roughly where they live,
sex, race, and their behavior that may have led to their becoming
infected. You have to determine what you want reported.

64

 

 
 

 

Even with reporting of antibody positive persons I am
not sure that we would comprehensively understand national
seroprevalence or seroincidence. The reason I say that is
because many people are unwilling to be tested or to put
themselves into test situations because of their concern about
confidentiality. Where voluntary testing has been compared with
anonymous or blinded testing, we find that voluntary testing
picks up about 50 percent of the infections. Putting into place
a reporting system for infections in no way would guarantee that
we would really get a comprehensive view of how much infection
was occurring in that nation or how rapidly it was spreading.
That is why we are embarking, in cooperating with state and local
government on a series of sentinel city surveys where we test
blinded specimens. By blinded I mean blood specimens that are
collected for other reasons than for AIDS testing. For example,
at hospitals in sexually-transmitted disease clinics, family
planning clinics, tuberculosis clinics, drug treatment centers,
etc. In other words, we don’t receive the names of those
providing the blood sample. The person doing the testing never
knows the name. By those approaches, as well as by following
military recruits and blood donors and by carrying out the pilot
test of a national random household seroprevalence survey, in
combination those approaches will provide the nation with a
better idea about seroprevalence and seroincidence than
individual reporting would. We have got to try all of those
approaches or we won’/t have good knowledge about seroprevalence.

MR. CREEDON: Dr. Scott who was a witness this morning
and who is the Health Commissioner from Rhode Island, in talking
about test results was kind of lamenting the fact that it is
unfortunate to do a test and find out that an individual is
seropositive and then not do anything about it which apparently
is often the case. He indicated the main problem, of
confidentiality might be solved if there were legislation either
at the state level or at the federal level to effectively
prohibit discrimination in whatever areas it should be
prohibited. I guess you still wouldn’t need it at the federal
level. Maybe I should ask the other panel members about
seropositivity and then acting on it in a way that is appropriate
for the chief health administrative officer of a particular state
or locality would be the way to go.

DR. MASON: Dr. Edwards has very eloquently spoken
about the problems of discrimination whether real or perceived.
Fear of discrimination has a chilling effect upon the willingness
of people to be tested. These are people who should be tested.
It would be in their own best interest to be tested. Anything
the Commission could do to encourage activity at the local, state
of federal level to do away with both discrimination and the fear
of discrimination would help in our total activities to control
this epidemic.

65

 

 

 
 

 

CHAIRMAN WATKINS: Mr. Creedon, I think we really have
to get to -- Ms. Gebbie?

MRS. GEBBIE: This is really a question for all four of
the panelists and one that you may want to follow up in writing
on because I know we don’t have a lot of time for long answers
here.

We heard this morning testimony about the desirability
of grounding public health policy in public health medical
science rather than in the political processes. I have some
trouble with that because I think public health is inherently
political, since it is a governmental operation to a certain
extent. We have, also, seen over the years a number of
criticisms of the public health establishment of having been
negligent in the early years of this epidemic, not responding
quickly, perhaps because of that politicization. I would be
interested in comments from each of you about the extent to which
you think either prejudices or political activities have
interfered with public health action and whether there is a
chance at some point of getting back to something that might be
called pure public health that is not so political.

DR. WASSERMAN: I am not sure that particularly with
this disease that you can get to pure public health. If I could
pick up on the last comments, ultimately the public health
approach that I would see would be to be able to have
reportability, be able to go forward with contact tracing,
ultimately to stop the transmission, the person-to-person
transmission of this disease. However, as people have stated,
you have to do this balancing act between the effectiveness of
reporting ultimately to do contact tracing to stop it, versus the
other side of the coin that because of the fear of discrimination
and the failure of confidentiality statutes to be, or just
confidentiality, to be accepted, that people might not come in to
‘be tested, and then we would have stoppage at the first place,
and we wouldn’t be able to identify anybody.

If we can work toward reducing the level of
discrimination that occurs in making the general population more
sensitive and more compassionate to those people who have the
disease rather than to their fears of getting it through
misunderstanding of how it is actually transmitted, then I think
we might be able to go back to a pure public health approach, but
that ends up with each locality and each state having to wrestle
with that problem. I think that is where we are today.

DR. NOVICK: We spent a lot time talking about issues
such as contact tracing or duty to warn which do have a certain
political interest attached to them, but I think the major things
that one has to do to counteract this epidemic are things such as
were talked about earlier by Dr. Edwards, like greatly expanding

66

 

 

 
 

 

our’ education, having it available through all grades and doing
something about IV drug abuse, not only treatment of IV drug
abuse because there is a high seroprevalence in many areas by the
time these individuals get to treatment but by doing something
earlier perhaps in the school, certainly in the community. It is
hard to understand the sort of political forces that would
protect against doing those things. I think it seems evident
that they should be done. We talked about contact tracing and
reporting. We will gain something on the margins here. They
will be important in a person-to-person interaction. Whether
they will be important if one models this in stopping this
epidemic, I tend to think not. In terms of health departments
and politics, I think there is another side to this, and that is
health departments have been universal almost in trying to stop
discrimination and, also, trying to stop action that is based on
non-scientific theories about transmission, such as food handling
or transmission in schools which may be taking place. So, I
think they have played a public health role and counteracted what
we may term a political role in some instances.

DR. EDWARDS: I am a strong believer in the political
process, and as you know, I am very strong believer in public
health. I think one of the problems we have had in this country
is we have sought a bonding between the political process and
public health. Certainly I feel very firmly I do not believe in
a pure public health status. That isn’t the way this country is
designed to function. I think we need a bonding and partnership
between the two so that public health can function comfortably
within the political process, and if there is one thing that is
going to be positive coming out of the AIDS issue, I think that
bonding process will take place, and my recommendation, of
course, is that the Federal Government sponsor workshops for
legislation, so that they are not required to quickly act upon
something from a health standpoint.

DR. WASSERMAN: Could I make just a couple of comments
and just give you three political issues that we certainly have
tried to wrestle with, and I don’t think we have been very
successful. In a pure public health, and maybe other would
disagree with this, but if we had the best of all worlds, we
would be able to distribute condoms in the schools, if we are
talking about recognizing that sex is going on in that age child
and that you would be able to prevent that. I don’t think that
is possiblé, and I don’t support that. We would be distributing
clean needles or bleach in the streets, recognizing again, that
IV drug abuse is going on. We would be distributing them in the
jails. I don’t think right now that is possible either for
political reasons, and finally, we would have many more
Methadone programs. I suspect, that in this next fiscal year we
will have a Methadone program in Montgomery County, but it has
been a long time coming. We would, also, have expanded drug
treatment programs, and they would be in a variety of

67

 

 

 
 

OT

neighborhoods. We would not hear, "Not in my backyard." So, I
think there are three or four political reasons right there that
prevent us from a full scope of public health armaments.

CHAIRMAN WATKINS: Dr. Mason?

DR. MASON: Just a quick comment. CDC has worked since
1982 with many experts, including representatives of local and
state government, in promulgating a series of AIDS guidelines.
They include guidelines on who ought to be donating blood, school
enterers, health care workers and related subjects, we have tried
to make these exclusively scientific recommendations. Although
cpc listens to the various pros and cons, ultimately the CDC cut
after listening to these experts has been on the side of the
science and public health rather than politics.

CHAIRMAN WATKINS: Dr. Lilly?

DR. LILLY: I basically just have one question. I
would like some comment from any of you. There is some data, not
extensive data, that suggest that sexual transmission of HIV
among gay men has very much declined. As far as I am aware, the
gay population if the only one that has tried extensively to put
forward safer sex education. I, personally, tend to make a
relationship between those two things, though I am not sure that
that necessarily holds. I would like your opinion on that and
your opinion in general about safer sex education for practicing
adults, sexually active adults.

 

DR. NOVICK: You know, there is information, as you are
undoubtedly aware from a number of studies, some information from
John Martin’s study in New York City at the Columbia School of
Public Health that has shown really a very strong change with
respect to over a period of 3 or 4 years in various sexual
practices that would contribute to infection, and we hear the
same, I think, anecdotes about less infection. But we haven’t
been able to document that yet in a case reporting system. I
think in terms of smaller groups such as the one that Martin has
studied, it shows a change in sexual practice.

DR. LILLY: Do you think that safer sex eduction by the
gay groups, for example, has been a factor in that?

DR. NOVICK: Yes. I think it has been a factor. We
have done studies of a group at the New York State Health
Department, as well, and it shows that it is a percentage of
people who have changed their sexual habits, not all of them but
a percentage, maybe 50 to 70 percent. That is the good news. I
guess the bad news would be the 30 percent or 40 percent who
haven/’t.

68

 

 

 
 

 

DR. MASON: If you will turn to the next to last graph
in the CDC booklet, it shows the rates of primary and secondary
syphilis in homosexual men in selected sites, 1980 through 1987.
For most of these cohorts in these cities, and we didn’t select
cities to show any particularly pattern, but to indicate what is
going on generally, there has been a decline in primary and
secondary syphilis rates in homosexual men which certainly has to
be attributed at least partially to safer sex education.

Now, when we look at primary and secondary syphilis in
heterosexuals, we have an epidemic on our hands. New cases of
syphilis have gone up nationally as the Commission knows.

When we have looked at primary and secondary syphilis
in homosexual men in Miami we find increases like in the
heterosexual population. Here many of the homosexual men are
black and Hispanic and are perhaps not part of the "in group"
where safer sex education has more effectively occurred.

We have to be careful that we don’t generalize data.
But studies in cohorts of homosexual men that CDC is following
show declines in incidence of new infections with time. The
decline in syphilis in homosexual men is consistent with that.

DR. WASSERMAN: Dr. Lilly, to respond to the same
second part of your question, Carol Doyle who is in the audience
who works for HERO and works for us in Montgomery County, in
addition to having prepared this extensive background briefing
book for you, when she gives her lectures to groups, she has
coined the work "outercourse." It is all of those fun kinds of
things that you can do physically without spreading bodily fluids
through intercourse. I am sure she would be willing to give you
her lecture at some time at a break.

DR. EDWARDS: I think to answer your question, in
Chicago, we definitely feel that the safe sex program among gay
white men has caused a decline and has a very pronounced effect.
When you go into the minority communities, you have a different
culture, and you must use different methods to produce that same
effect, and that is what we are attempting to do now, but to
answer your question, yes, safe sexual practice, indeed, has had
its effect, positively on the spread of disease.

CHAIRMAN WATKINS: Ms. Pullen?

MS. PULLEN: Dr. Mason, can you tell me how widespread
is the practice of newborn testing and if it is not universal, in
how many locations it is and perhaps where some of those are?

DR. MASON: I am sitting next to one of the world’s
experts in newborn testing.

69

 

 
 

 

MS. PULLEN: He can tell us about New York. I want to
know about the United States, if you will excuse nme. |

DR. MASON: There are a number of ways that we go about
testing newborns. One can test babies when they are born after
getting informed consent from the mother. There are a number of
city and hospital-based programs doing this. Seroprevalence
rates in the newborn reflects the status of the mother. You are
not measuring the infection rate in infants because they derive
antibodies from the mother. A positive mother will give birth to
a positive infant, whether or not the infant is infected. So,
when we test newborn infants, we are really testing the antibody
status of mothers rather than the child. You have to wait for up
to 6 months to know whether the child has been infected.

One of the novel ways of getting at mothers through
their newborns was developed in Massachusetts. Massachusetts has
had wide experience in AIDS antibody testing the filter paper
dots that are collected for PKY testing. New York and New Mexico
have already used this same procedure. CDC is working with other
states to see if this technique cannot be more universally
applied across the nation. The 30 sentinel cities where we are
bringing up a very carefully engineered seroprevalence
surveillance system newborns will be tested on a blinded basis to
find out how many mothers are infected.

MS. PULLEN: How many states are you working with to
develop the PKU-HIV testing?

DR. MASON: At least twenty-eight states will receive
funds this fiscal year from CDC or NICHD. In addition to the
states cooperating with CDC in the Family of Surveys, 8
additional states have started or will soon start testing filter
paper blood specimens from newborns for HIV antibody. Seven of
these states will be supported by monies from CDC and one
(Massachusetts) is being supported by monies from NICHD. For the
states participating in the Family of Surveys, 22 different
states and territories received monies from CDC at the end of
January 1988 to initiate filter paper testing of blood from
newborns. The number of states that apply and will be funded
should increase in the future, and we anticipate that at least 28
states will receive funding either from CDC or from NICHD this
fiscal year to conduct such studies. Most states and communities
need additional resources to move into this testing mode. They
have to set up the new procedures and add laboratory staff.

CHAIRMAN WATKINS: Dr. Lee?

DR. LEE: First of all, Dr. Wasserman, I like this
“outercourse." It has a catchy ring. I am not sure it will
catch on though. Second of all, on incidence, this is something
that escapes me, listening to these statistics the last 6 months.

70

 

 
 

 

 

If you listened to Landesman talk about 5 percent or 3 percent of
his women in delivery units wherever he works downstate; if you
listen to this 2 percent newborns in Manhattan; if you listen to
Steve Joseph swear that we have 600,000 HIV-infected people in
New York City, am I correct; isn’t that the number that is
usually given 5 or 6 hundred thousand?

DR. NOVICK: Five hundred thousand. Steve Joseph
usually gives 500,000.

DR. LEE: We should be really on the avalanche part of
the curve where we are developing AIDS patients, but this does
not seem to be the case, looking at the CDC statistics, and is it
that we are just not really measuring true incidence here, that
we are measuring very specific populations?

DR. NOVICK: Yes, the true incidence is the HIV
infection, and nobody knows how many people there are or who are
infected with this. So, instead of knowing, we have engaged in
sort of making up these speculative estimates, and you are
absolutely right. An estimate of 1/2 million for New York State
doesn’t match with case generation, and it is probably too high
by a significant amount. We are doing the seroprevalence studies
of which the newborn is only one. We are doing one-half dozen of
them, and we will get a better idea. Already our idea has been
changed, for example, based on the data that was up on the slide
before. We could roughly estimate the number of infected women
in New York State at about 25,000 compared to the 50,000 that was
in that 500,000 estimate. So, I think you are going to see these
estimates revised downward but getting at the exact number
without a random door-to-door survey like Dr. Mason described may
be attempted, is not possible.

DR. LEE: One last thing. We all have our own
constituencies here. I am from New York State and New York City,
and I notice that California has half the AIDS cases and got 50
percent more money from CDC than New York. Why Dr. Mason, are
you shortchanging New York?

(Laughter. )

DR. MASON: There are a number of reasons for those
difference. I will have to submit to you in writing because I
don’t follow them all that closely.

DR. LEE: Submit them to Mayor Koch.

DR. MASON: We are very cognizant of New York State and

New York City’s problem, and I will submit in writing why those |
differences exist.

71

 

 
 

 

To determine whether a state or local health agency has
received a fair share of federal funds for program operations, it
is important to include all the types of funding received by the
different areas, not just to focus on one type of award.

In CDCs booklet, AIDS Prevention Activities FY 1987,
the monies awarded to state and local health departments for
surveillance is listed on pages 8 and 9. California health
agencies received $807,824 for these activities, compared with
$772,716 for New York. The award to New York City of $335,080
for case surveillance was the largest single award to these
areas, in addition to which New york City réceived an award of
$137,053 for HIV surveillance. This latter amount was almost 6
times higher than the amount awarded to San Francisco for the
same activity.

The monies awarded to state and local health
departments for risk reduction activities is listed on pages 25
and 26 of the booklet. All areas of California received
$5,443,873 compared with all areas of New York receiving
$8,517,717. The largest award to a local health agency was a
grant of $3,545,274 to New York City, and the largest award to a
State agency was $4,489,655 to New York state.

The monies awarded to state and local education
agencies for school health education is listed on page 36 of the
booklet. In this area, the state of California and the cities of
Los Angeles and San Francisco received a total award of
$1,203,423 compared with a total award of $839,686 for New York
City and New York state. Of the 27 awards made, the award of
$540,000 to New York state was the largest single award.

CHAIRMAN WATKINS: Mr. DeVos?

MR. DEVOS: I am on a track, gentlemen. It is kind of
old but maybe new to you, but I keep trying to find methods to
solve the problem. I used to give a speech on the four stages
that business goes through. One is the creation of the business.
The next one is managing it, and we spend all of our time
managing it, and pretty soon, when it doesn’t grow or go we have
got to blame somebody, and so, we defend the growth or the non-
growth, and then pretty soon we descend to blaming, and blaming
is the stage that seems to follow a lot. I remember talking to
President Ford one day about the government over here being very
busy trying to defend their turf or blame somebody for why
something else went wrong somewhere else, and I keep trying to
get us back to finding a solution. I get concerned. TI ask a
question. Is this solution going to be people driven or
government driven, and it is because I hear everybody talking
about what the government should do or is going to do, but maybe
you could help me. I haven’t found a way to ever help anybody
who doesn’t want to help himself, and I think we all agree with

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that in principle. So, when I come down to it, how in the work
do we reach people to make them want to help themselves, and I am
not here to discuss testing because there are other panels on
that, but we say, "We ought to have more testing so we get this
data." I want to be tested so I know where I am at. I am not an
animal to be tested for some statistical study. I am a human
being, and I want to know for my sake. I understand the
confidentiality problem, but just seems like we get carried away
with the study of it, and we talk about it, and we have got
numbers, and we have figures, and we talk about societal
problems. We spend, I don’t know, $500 billion a year in this
country on it, and all I do is is look down my list, and I don’t
care whether it is alcohol or drugs or homelessness or
hopelessness or unemployment or underemployment of divorce.

We don’t seem to make much progress, and so, I, am no
an AIDS panel, and what I want to ask is if you can help me find
a solution to prevent it. Now, one solution in prevention, it
seems to me is to make sure somebody who has been exposed or who
has likely been exposed knows he has got it so that we can work
with it. Now, is that not a valid thing? These are people who
care about other people like anybody else. They may have a
high-risk pattern, but I want to get down to dealing with human
beings and work on behavioral change, and I think we all do.

DR. WASSERMAN: In a variety of settings we try to
emphasize what the high-risk behaviors are in a very sensitive
way so that people will come forward. You then let them know
that there are eight anonymous and confidential place where they
can go to be tested to find out; basically what you want to do in
a non-threatening way in the schools, out in the streets,
wherever you can go to people where you know professionally there
is a high risk, is to let them know that this is a behavior:
multiple sexual partners, the sharing of needles, you want to
educate that group, make them sensitive to where or not they fit
into that high-risk pattern and then to very sensitively engage
them and have then come in.

MR. DEVOS: You are talking of specific things that you
are doing, and I think we need development of that.

DR. WASSERMAN: I think that has to go on and be
broadened in scope on a national basis.

MR. DEVOS: I agree,- but I need, and we need your
specific work, your results, how you are doing it so we can
amplify it. One of these days this Commission is going to be
over with, and we are going to have tons of paper, and finally we
have got. to get down to something very specific on reaching the
human being where he lives so that he changes his behavior or he
knows that his action is going to kill somebody else. We have

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a

got to find these people and help them, and I salute you for what
you are doing. I just want to hear more about that.

DR. WASSERMAN: Let me suggest that I don’t know
whether you have a panel like this, but you could use Carol Doyle
who is in the audience and others like her who represent a
variety of approaches, from a variety of communities across the
country. Let them give you their approach and see whether you
think that would be effective, if you were one of those
population members at risk.

MR. DEVOS: I cannot address that, but you are in that
marketplace. You are working hard in there. We are trying to
reach them, whether we need better advertising like the man from
Chicago said or whatever, but we need models that work, and we
sit here day after day, month after month, and I will tell you,
it is hard to pull up models that are really getting down, and I
don’t care whether it is homelessness or hopelessness or
unemployment or all the rest of these things.

DR. WASSERMAN: I am going to send Carol to you before
the end of the day.

MR. DEVOS: I want to know what you are doing, how you
are doing it and how it is working. That is all I want to know.
Then we can share it.

 

DR. EDWARDS: We are beginning to do something in
Chicago that I think you might be interested in. First of all,
we know that behavior is not a simple process. We know that some
things we take for granted in behavior. We are not aware of how
we developed in terms of helping one’s self. That is not an
automatic thing. There was something that occurred in your life,
in your up-bringing that instilled that within you. Now, we are
raising families with a lack of that thing. We are attempting
now to deal with them -- especially pre-adolescents -- and
getting them to understand who they are and to deprogram them
from thinking that they are worthless and nothing and hopeless.
We are starting there, and I think we are going to demonstrate
something, and it is not involved in any funding that we have but
a firm belief that I have.

MR. DEVOS: .That is the stuff we need. I have another
little talk I give, and it is called the three A’s. I think
action is the result of attitude, and attitude is the result of
atmosphere, and we have got to put those people in an atmosphere
of hope.

DR. EDWARDS: That is right. You have got it.

MR. DEVOS: And how we are going to fashion that, and
you are working on it, that is the stuff we have got to get to,

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and then you begin to unravel some of the other problems, and

so, I am delighted to hear what you are doing and we have got to
share specifics on things that we have got working in our
communities, and then we can spread that out across the land,

and we can tackle some of these things. So, I salute you for
what you are doing, and I am not minimizing the need for data. I
want to try to get down to a person whose life we can impact and
get on with something.

CHAIRMAN WATKINS: Dr. Walsh?
‘ \

DR. WALSH: In trying to reach the atmosphere that Mr.
DeVos is talking about, we do need data. I am impressed with,
Jim, your attitude of not mandating things but advising,
collecting, providing data, collecting data and so on, and
leaving a great deal to the states.

\

One of the things you said interested me. When you
said that we want to normalize this disease and I believe I
understand what you mean, unfortunately, there is something about
this disease which is a little different than most other
diseases, in that it kills relatively soon, and at least in our
present knowledge of it, we don’t hold much hope for those who
are seropositive who may get sick down the line, and we know the
disease is easily transmissible. We are all aware about
confidentiality and such, but by the same token, as public health
officers you, also, have in your mandate the responsibility of
the health of the public.

Now, anonymous testing by number as one of the other
Commissioners has said, not identifying someone, even though you
have a seropositive because it simply gives you another
statistical picture seems to me to be the worst thing in the
world that we could be doing to create the atmosphere that Rich
is talking about. I wonder, for example, what is your attitude
towards more extensive testing with the degree of
confidentiality, of course. Those of us who practice medicine
always practice in an atmosphere of confidentiality and maintain
it with our patients, but we have an obligation to not let this
disease spread, to contain this disease as much as possible.
What are your attitudes towards the expansion of contact tracing
and towards the expansion of almost creating an atmosphere? (I
hate to use the word "mandatory" on anything because I hate
mandatory anything of any kind.) But there has to be a way in
which we can persuade these people that they are endangering
other people. There has to be some contriteness in this whole
picture by the people with the disease. Otherwise, we are simply
going along with kidding ourselves with accumulating numbers.

We are testing prenatally, but how many of the poor,
for example, are actually getting prenatal care? So, this
becomes sort of a false statistic because the underpriviledge in

75

 

 

 
 

 

the major cities, many of then never get any prenatal care. We
have no idea what is existing among this population, and I share
a degree of impatience that Rich demonstrated because we have
been listening for 6 months to why we cannot do anything, rather
than why we can do things, and somebody’s feelings may in the
long run be hurt; yet the gay community has demonstrated that you
can change behavior. Granted you have to do it in a different
way in other minority groups, but I think, also, while
confidentiality has been one of the great demands of the gay
community, the gay community obviously exchange information with
one another so as to bring about a diminishment of the spread of
this disease. They must have. There is no other way it could
have been done, and I am just wondering what can we do from the
standpoint of making contact tracing more of a policy, making
testing more of a policy.

We are doing random testing and anonymous testing, and
we have heard testimony, for example, by an official in New York
that they did random testing on 50 persons at Riker’s Island and
got 64 percent positives of people who are in prison an average
of 47 days. When they leave prison, what is the first thing
they look for? They look for a sexual partner. Don’t we have an
obligation to stop this as a public health officer? I don’t
know. I mean I should think we would, but these are the problems
that you have to tell us because, at least I don’t feel this
Commission should be the patsies that come out and make all the
hard decisions for you because as Kris Gebbie said, someone told
us this morning that everything should be mandated by the fact of
public health and science. When you get a killing disease, you
have got an obligation to protect the public until we can find a
prevention or a cure, and I don’t think that we are doing that.

I think we are playing games, and I would welcome any comment.

DR. MASON: I would be happy to start those comments.
First of all, we have got a lot going on in this country. Who is
discouraged? I am not. We have a bad epidemic going on. It has
taken a while to build the structure that will combat it and get
grants and information out. In the last few months the people of
this nation have been hearing how the disease is transmitted and
how it is not.

You say that this disease is easily transmitted, I
don’t agree with you. One has to be involved in a very intimate
kind of contact where semen, vaginal secretions or blood are
shared. You have to do it probably repeatedly, unless you are
very unlucky. So, it is not easily transmitted. It is a disease
that is transmitted only in intimate behavior.

DR. WALSH: Which should make it easier to control,
Jim.

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DR. MASON: That is what I am saying. There are many
people who feel that all we have to do is test, and the epidemic
will stop. That isn’t true either. What we have to do is get
people to change their behavior, and although testing may help to
change behavior for some individuals, we would like to help
everyone change their behavior whether or not they have been
tested. There is no guarantee that because you have been tested
you will change your behavior. In the Commissions interim
report, it recommended opening up additional treatment slots for
IV drug abusers, "It does little good to tell an IV drug abuser
that they are AIDS positive if in a few hours they are going to
be willing to do about anything to get their next fix. If we
test and don’t give them a treatment slot, what good have we
done? Everything has to be put into perspective. We often test
them in prisons, and then we don’t provide separate facilities.
It is like the dog that chases the car and suddenly catches it.
It doesn’t know what to do there. If we do more testing and we
must, then there is, also, a responsibility to have the
counseling, the treatment slots and the other resources in place
that then these people will need.

DR. WALSH: Jim, I am not saying that. I am saying
that the fact that you test them in prison, and you find them
positive and you say to me, "So what?" I am saying to you that
it is your obligation to make a recommendation that has teeth in
it that would prevent these people from spreading the disease.
Are you suggesting criminal penalties if they go out and engage

in behavior? No.

DR. MASON: The point is that all you can do to
absolutely prevent them from transmitting disease is to not let
them out of the prison. Maybe that is what you want to do, but
then you have to segregate them, and so far few have been willing
to put that kind of money into the Nation’s prisons. I am just
simply saying that with every decision there is a series of other
actions that have to be put in place to make that decision
rational.

With regard to testing generally, CDC guidelines,
recommend that everyone who comes into a series of clinical
settings be routinely tested. We have recommended partner
notification. I don’t believe there are enough resources to
begin to do really comprehensive partner notification ona
national basis. We are not beginning to approach that magnitude
of resources because of their labor intensity.

DR. WALSH: Are you opposing contact tracing?

DR. MASON: No, we are recommending it in the
documents.

77

 

 
 

 

DR. WALSH: Then you must believe in partner
notification.

DR. MASON: Contact tracing and partner notification,
are similar concepts. We get mixed up in our use of words.
Unless antibody positive individuals are willing to volunteer the
names of their partners, you never get them. In other words, the
bases for partner notification or contact tracking has to be a
comfortable, sensitive, voluntary type of approach. How many
health departments with large numbers of cases such as New York
City of San Francisco have the people resources to go out and
find the contacts that are named. People who test positive are
generally asked to notify their own partners and ask the to come
into the counseling and testing clinic. With syphilis in the
past, we have had to ask people to notify their own partners and
encourage them to come in. Without establishing sensitivity and
trust the whole system breaks down. Coercion as it relates to
any STD including AIDS fails. We don’t put people on the rack
here in this country. In an atmosphere that doesn’t engender
trust and confidence you don’t have addresses if we are talking
about IV drug abuse. We have to depend upon the infected person
to make the system work. CDC is asking each state, in receiving
an FY 1988 AIDS grant for risk reduction, that they prepare a
plan for implementing partner notification or contact tracing.
Each local government entity as we have heard today will approach
that differently in relationship to their AIDS cases and total
population. These gentlemen who are here with me are
approaching partner notification on a rational basis. They are
more interested in the public health than they are in simply
social or political issues. That is what they are paid to do,
and that is why they are here.

DR. NOVICK: Yes, I think in terms of just the
impression here. Confidential testing is really sharply
increasing in New York State, not on the decrease, must more so
that the other forms of testing. In our state, as I mentioned
earlier, we are going after all the public sort of facilities
where there might be high risk; all the family planning clinics
to have the capability to do confidential testing. We don’t
permit anonymous testing. All the prenatal sites are working
with Medicaid. As Dr. Mason mentioned, our STD clinics in the
counties are doing this, and they are following this up where we
have the starf on site. But at STD clinics, for example, we
permit partner notification. Contact tracing would be another
word for it, as long as there is participation; it is voluntary,
and there is confidentiality. So, I do think that what you have
indicated is taking place.

DR. WALSH: That is what I was trying to get at
because, again, in the recommendation that comes out of this
Commission, with limited resources, we have to have the judgment
of people like yourself on what are the priorities. It would be

78

 

 
 

 

ideal if we could put everybody in the country in a treatment
slot on drugs. It would be ideal if we could provide individual
counselors for everyone and so on, but as public health people in
the trenches which is the best way for us to go? Let us say that
we go to Congress for X amount of dollars or recommend it in this
report, where is the best way to spend it prioritywise, so that
we give them some choices rather than have them make, I mean we
give them firm recommendations on the best way to spend whatever
they are willing to appropriate. That is what I am after, and I
think that you have, in part answered that.

DR. EDWARDS: I feel, if I might, doctor, that if we
are going to be effective in dealing with this problem, we have
to think about it as a societal problem. We cannot think about
it in the traditional methods by which we have dealt with other
problems. We must, first of all, understand that keeping busy
and doing things to satisfy the-public is not necessarily
accomplishing what we want to do. We know that if we were to
demand testing and so forth that a lot of people would go
underground. We know that, and will accomplish little or
nothing. We know the best solution, if we can get some of our
expertise centered on educating the public. As I mentioned in
my talk, we know how to sell everything. We know how to change
people’s behavior about buying, but we have not transferred this
expertise into health.

Now, if we can convince people to be responsible for
sex partners, all the prisoners in the world can get out there,
and people will protect themselves against it. We know that, but
we have not spent the resources and used the expertise that we
already have of how to sell people ideas, how to sell people
concepts.

For the first time we are being forced to deal with
society as a whole. That is the only way we are going to conquer
this disease. Drugs will be here to stay. We have to teach our
young people how to walk among drugs and not be affected by then.
Sex is here to stay. We have go to bring sex back to more of an
individual responsibility, you see. We can do that, I think, by
dealing with society and a whole, and that is to commit our
resources to educating and refining society as a whole, and it
will take care of itself.

DR. WALSH: I agree with you.

CHAIRMAN WATKINS: Dr. Walsh, we are really going to
have to move along. We have several other members. I don’t want
to keep the panel more than one-half hour beyond.

DR. WALSH: Did Dr. Wasserman have a comment?

79

 

 
 

 

DR. WASSERMAN: Just a very quick comment. After I
finished medical school, I went to law school, and I feel an
overwhelming need when I see a patient who has the disease who
might go back and spread that disease to a sexual partner, I feel
this obligation of duty to warn. I learned about the duty to
warn in law school. I brought it up at our Governor’s AIDS
Conference. It is a very difficult concept to understand. Under
Kris Gebbie’s guidance I worked on an AIDS confidentiality
workshop and her antidiscrimination principles that were
presented from ASTHO. Let me just read to you our warning of
persons at increase risk of infection. In exercising its
authority to protect individuals at increased risk of infection,
the public health agency, and_I_think it is our obligation
because we are training to do it, should warn such individuals
that they are at risk. Prior to conveying any such warning, the
public health agency should urge the infected person to notify
voluntarily his or her sexual or needle-sharing partner, not
coerce but first try to get them to voluntarily do it. If the
public agency warns the endangered person, that is if there is no
voluntary movement, then we must undergo our obligation and warn
that third party. We should do so by providing the person with
the minimum information necessary so that we don’t necessarily
have to disclose the identity of the person who put that innocent
party at risk, and I feel that very strongly. We have enacted
that within our health department. How much farther it is going
to go, I don’t know, but that is the message that I carry with
me,

DR. WALSH: I think that is excellent.
CHAIRMAN WATKINS: Thank you very much. Dr. SerVaas?

DR. SERVAAS: My question is to Dr. Mason. Most all
states now, I believe, have PKU testing for babies. You
mentioned that, even though black babies don’t, mostly, have PKU,
and galactosemia, don’t most state have that, even though it is
only 1 out of 30,000 or even greater lack of incidence? Do you
believe that most mothers would object to having their babies
tested in this blind study you are doing?

It just seems to me that in line with what Rick DeVos
said, that it is getting later for us still to be doing blind
studies. Could we not deduct out the percentage who would
refuse? Have we ever tried, and could we not then start testing
and telling mothers so that they could use the precautions to
prevent spreading it or in handling the blood from the babies or
putting on Band-aids, and a lot of things? I just feel sorry for
the mother who has an AIDS positive child and doesn’t know it.

DR. MASON: We have encouraged testing of women in
family planning and prenatal settings. It is important to
determine if a woman is positive before she get pregnant. Then

80

 

 
 

 

you can counsel her on the risks of having a baby. As the
community acquires the resources they ought to start with high-
risk mothers -~ the mothers that are most likely to be positive
-- and then fan out from there. New York determined how many
women with positive tests were being delivered by using blind
filer paper discs. That led to a policy decision to provide
testing services to at-risk women. Blind testing provides the
intelligence and information you need to start targeting routine
testing in family planning and other clinical settings for women.

CHAIRMAN WATKINS: Dr. Crenshaw?

DR. CRENSHAW: In the interests of time, Dr. Mason, I
am going to ask if I can get a response to my question in
writing. I appreciated very much your thoughtful comments about
the normalization of public health and medical approaches to the
GQisease, and particularly in concert with developing available
and responsible confidentiality systems that aren’t in place
everywhere yet. Could you put in writing to us how we, as a
Commission can best help you accelerate that process. There must
be some model communities where they have gone from no resources
to rather widespread effectiveness in short order and perhaps
even some suggestions on how this can be achieved where we
shorten our learning curve?

DR. MASON: I would be happy to respond to that.

CHAIRMAN WATKINS: Let me close out this hearing with
one question. You have each touched on it, and it seems to me
there is a very fundamental principle underlying the points that
you made. With the flow of information coming down from
competent technical authority on what is involved in this disease
to give you the ammunition you need at the public health level
(state, county and local) is it not possible that if you three
public health officials were to devise the proper curriculum that
you would like to see mandating from that technical advice that
you might find in Belvedere, Illinois versus Chicago, Illinois;
Montgomery Country versus Calvert County; New York City versus
Boonville or Ithaca, New York, well thought through strategies in
those local areas with those same guidelines that would be
significantly different cultural, the way you target, the
interest in the local community organizations, health officials,
PTA, families and so forth? If you were each to go into those
different areas yourself and help define those strategies,
educational strategies, prevention strategies, you would find
yourself turning your hat around and coming up with different
answers for those communities and find it quite acceptable. In
fact, you would turn around and give yourself an A for both, and
they would both be totally different, not in the fundamentals but
in the way you apply those fundamentals to meet the cultural
needs of the society around you. If that is the case, then it
seems to me there is a limit to which the federal level should

81

 
 

 

try to impose themselves on the way you decide to run those and
give you full credit, if you will, to come up with some different
answers to the same set of fundamental questions like a quiz, not
like a quiz. You can have different answers for the same
question. Isn’t that the way our pluralistic society runs, and
shouldn’t that be a general underlying approach so that there is
a cutoff level to which we are trying to come up with some
curricular level which we do not try to do in other educational
fields but allow the diversity of the nation to focus on this in
such a way that we don’t need to inflict ourselves on others.

You are kind of telling us that there is going to be a different
approach in each of the areas, and we should allow you to take
those approaches even though he is going to give you guidelines
that say, "Here are the elements that should pop into view at the
right points, right times in your life sciences continuum, your
human biology continuum of education, trying to get all the
various settings: in schools, out of schools, in the workplace,
our of the workplace people." Could you give me a comment on
that, the three of you.?

DR. NOVICK: I think you are correct. If the
fundamentals are the same, I think the approaches may be somewhat
different, particularly where some communities have different
risk factors than others, but Dr. Mason is not giving us all the
guidelines we need through no fault of his own. I am sure it
gets back to Dr. Edwards’ comment: that there are a lot of areas
here that go beyond the transmission of the disease. They work
on how we change behavior, how we change society, how we prevent
drug abuse. These are difficult questions. I certainly don’t
have the answers to them. There is no concerted approach, I
don’t think, to give us the answers to some’ of these very
difficult questions that Dr. Edwards posed, and I think Dr. Mason
would admit that the technical guidance we get from the Centers
for Disease Control is not giving us the answers either.

CHAIRMAN WATKINS: Is there some other federal level
involvement then, other than Centers for Disease Control you are
telling us that you need guidance from, and if so are there
certain elements that say, "Yes, we need this kind of guidance,
and then let us alone, and we will define the right answers for
the right community, for the right ethnic cultures?"

DR. NOVICK: Our whole scientific literature about
behavior change with respect to health and schools is limited. I
mean we have some data in certain ways that has been applied to
small groups in terms of substance abuse and cigarette smoking,
but we don’t know enough about that, let alone the out-of-school
individuals whom you asked about earlier. I think if we are
talking about education, I think if we are talking about those
factors that make an individual susceptible to drug use versus
not and how we influence that, we don’t have guidelines nor do I
know where they are really being formulated.

82

 

 
 

 

CHAIRMAN WATKINS: Then you are saying, Dr. Novick,
that you think that the Federal Government should be focusing on
certain areas unknown to this point or where there is inadequate
information that would be useful to you to come down from that
level, whether it is research, whether it is legislation or other
kinds of things?

DR. NOVICK: Certainly research. I think there needs
to be must more in terms of demonstrations in these areas that we
are talking about that are now presently funded. I think you
have heard about the grants we get for schools; yet we don’t have
well developed models yet because of an absence of research and
an absence of demonstrations on what changes behaviors for the
school child.

CHAIRMAN WATKINS: Okay, this is a very informative
panel, very important panel, and this is why we asked you to stay
with us a little bit longer than initially scheduled. We don’t
have this kind of talent assembled at one table very often. So,
it has been important, and I would assume that we will have more
questions that we would like to exchange answers with you on, and
if you could keep this hearing open, effectively, for you
individually and let us get back to you for individual questions
that we might have. We have all been enlightened by this
performance today and we want to thank you very much for taking
the extra time to stay with us and hope we can continue the
dialogue with us. Thanks very much.

CHAIRMAN WATKINS: We bring to the table now Dr. David
Hendersen, Chief, Hospital Epidemiology, National Institutes of
Health; Dr. Al Saah, Johns Hopkins Hospital, Baltimore Maryland
and Dr. Michael Ascher, Deputy Chief, Virus Lab, Berkeley,
California. The subject will be laboratory support for HIV
prevention services.

I am sorry. We also have Dr. Brooks Jackson, Assistant
Professor, Department of Laboratory Medicine and Pathology,
University of Minnesota; Medical Director, AIDS Lab,

Minneapolis, Minnesota. Dr. Hendersen, would you proceed,
please, with your statement.

DR. HENDERSEN: Yes, sir. Thank you very much.

My mission with you and for you this afternoon is a
difficult one. I have been given the charge of essentially
providing you with an overview of the function of the human
immune system and then specifically to discuss how the virus
causes this disease, interacts with the human immune systen, in
about 15 minutes. That charge is a prodigious one, indeed.
What I am going to do, if I could have my first slide, is to
mention briefly some aspects of the human immune system that we
won’t really delve into in any detail.

83

 

 
 

 

As I am sure that many of the panel are aware, there is
an entire aspect of human immunity that we don’t commonly think
of as immunity, referred to as nonspecific immunity. Included in
this category are physical barriers, such as the skin, mucous
membranes and so on, that aren’t traditionally thought of as
belonging to the immune system, but, nonetheless, protect us from
a variety of microbes that would ordinarily have easy access to
the body.

What I will do instead is to focus specifically on
aspects of the immune system that relate to this virus infection.
We will spend a fair amount of time talking bout
antibody-mediated immunity, primarily because the rest of the
afternoon will focus on the test kits that are useful for
detecting the antibody to HIV and detecting who in society is
infected with this virus.

I will also mention cell-mediated immunity or cellular
immunity, primarily because that is the aspect of immunity that
is defective, or at least, primarily defective, in people who
are infected with this virus.

We might note before we move on that under the column
of "Nonspecific Immunity," a line mentions -- "Complement."
"Complement" is a series or a system of proteins that do
participate in both the specific and nonspecific immune
responses. May I have the next slide, please.

Dr. Anthony Fauci, who is the Director of the National
Institute of Allergy and Infectious Diseases, has made what I
think is a very clever analogy -- comparing the human immune
system to a symphony orchestra. If you think of the immune
system as a symphony orchestra, T-4 lymphocyte or the
helper/inducer cell would function both as the conductor and the
principal violinist in this orchestra.

Other cells or cell systems that are responsible for
providing immunity, including humoral immunity, nonspecific
immunity and so forth would represent the other players in our
symphony. Next slide, please.

We will turn first to antibody-mediated immunity on the
right part the slide. This slide depicts humoral immunity or
immunity mediated by antibodies.

Let me spend just a moment talking about what
antibodies are. These are specific proteins produced by the body
in response to a stimulus. Any microorganism, whether it be a
bacteria, virus or fungus or whatever, has a variety of
determinants both on its surface as well as inside of the
pathogen, which will provoke antibody responses. Each one of

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these determinants will provoke a family of antibodies and each
response ultimately will narrow to a few antibodies that have
the highest specificity for the particular immunogen that the
antibody is directed against.

In terms of specificity, the response is one that is
very similar to a key and lock specificity, such that an antibody
directed against an antigen that has a defined shape will take a
shape to match the shape that is formed by the antigen. One can
imagine that this would be a very specific response. On the
other hand, it is also the case that, in the human immune systen,
at least, there is a limited repertoire; antibodies that are
cross reactive might also be found. Those are antibodies raised
initially against a single protein or antigen that also react
with another one.

It is this kind of cross reaction that could result in
one kind of false positive in the test for HIV antibodies that
you will hear about later. Next slide, please.

Antibodies provide immunity through a variety of
functions. The first process that provides immunity is a process
called opsonization. Opsonization is basically the process of
"sugar coating" the pathogens to make it easier for cells to
ingest and kill pathogens.

A second way that antibodies contribute to immunity is
through the activation of the complement system that I mentioned
earlier. In a situation in which an antigen reacts with a
specific antibody, the antibody opens up a bit and this opening
up of the antibody activates the complement cascade. Complement
gets deposited on the surface of the microbe and the complement
itself can be responsible for killing directly.

A third example of a mechanism through which antibodies
participate in immunity is the concept of toxin neutralization
(e.g., tetanus toxin or diphtheria toxins -- are toxins produced
by bacteria). If an antibody binds to the active site for these
toxin, it neutralizes the effect of the toxins, even though the
toxin still may be circulating in the blood stream.

A fourth protective mechanism is the binding of the
attachment’ site of the pathogen. A virus, which gets into the
body, has a given host range; that is, it will attach to the
organism via a certain mechanism. If the antibody binds in just
that area, it could, in fact, prevent attachment and, therefore,
prevent infection or abort the infection should it start.

A fifth general way through which antibodies

participate in immunity is the concept of viral neutralization
and I will leave that until last.

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The final issue listed on this particular slide is the
notation of the concept of arming killer lymphocytes for a
phenomenon called ant ibody-dependent cellular cytotoxicity
(ADCC). I am not going to go into detail to talk about ADcc;
just to note that antibodies also participate in other aspects
of immunity; in this instance contributing in some way to
cellular immunity. Next slide, please.

When we discuss HIV infection we are talking about a
virus infection. For this reason it may be worthwhile to talk in
some detail about mechanisms of viral neutralization by
antibodies. That happens essentially in four different ways --
first, as we mentioned earlier, with the fixation of complement.
Complement, by itself, when activated, can directly inactivate
some viruses.

Secondly, antibodies may neutralize viruses through the
inhibition of viral attachment to target cells. This inhibition
can occur through the mechanism that I described earlier; that
is, through blocking of the host range of the virus.

A third, mechanism of viral neutralization is
interference with normal virus functions; for example, the virus
function called unenveloping; that is, as the virus gets inside
the cell, the first that happens is it opens up its cellular
envelope to allow the insides of the virus to have access to the
inside of the cell. If an antibody is sitting exactly on the
point where the virus would open its envelope, it can prevent
that function and prevent the cell from becoming infected.

Fourth, the physical presence of an antibody molecule
attached to a virus may, just on the basis of its size alone,
prevent the virus from entering into its target cell. Next
slide, please.

To talk just very briefly about how the antibody
response develops, again without going into detail, I would note,
that, on a superficial level, this appears to be a relatively
simple process. Antigens, which are in the bloodstream or in the
circulation, are engulfed by a macrophage. The macrophage will
ingest these antigens, processes them some and will array them on
its surface and present them to either a B-lymphocyte, which
ultimately will differentiate into an antibody~producing cell, or
to a T4 lymphocyte, (the helper cell that we mentioned earlier, )
which can initiate cell-mediated responses and also augment or
amplify the B-cell responses; (that is, the antibody-producing
responses.) Now, all this takes time. The antigen gets into
the circulation, gets processed by a macrophage. There is a
process which takes place ultimately resulting in the production
of a family of antibodies that have specificity for the infecting
pathogen.

86

 

 
 

 

This period of time, (i.e., the time from infection
until the development of detectable levels of antibody), has been
referred to in the past as the so-called "window of
infectivity"; that is, the time during which someone is infected
with HIV, for example, and infectious, but not detectable using
the conventional antibody detection kits.

Recently, some investigators have suggested that this
window of infectivity may be opened a bit wider than the initial
three to six months that was suggested early on. Use of new
technologies that detect parts of the virus itself or perhaps the
genetic material associated with the virus may ultimately resolve
this issue. It should be pointed out, however, that people in
this window of infectivity are both infected and infectious.

Next slide, please.

Turning now to cell-mediated immunity, this is the arm
of the immune system that works primarily against intracellular
pathogens. These are organisms that get into the body and
directly infect cells. Once inside of cells, such organisms
are not easily accessible to antibodies. Thus, we have to have
a second mechanism available to kill such infected cells.

Cellular immunity is primarily the domain of the
T-lymphocyte. T-lymphocytes are divided into sub-populations
based entirely on protein markers found on the surface and these
markers are associated with the function of the marrow sub-
populations of cells. For example, we refer to the
T-helper/inducer cell as the T4 cell. That is because it has
this molecule CD4 present on its surface, which identifies it.
Those cells provide a series of specific functions.

The T8 cells, suppressor cells or cytotoxic cells
function primarily to damp or suppress immune responses. Also
those cells differentiate into cytotoxic lymphocytes, the cells
that are actively involved in killing the cellular targets that
are infected with viruses.

T-cells respond to antigens in a very similar way to
that I described for B-cells; that is, the antigen is engulfed by
a macrophage, presented, arrayed on its surface; processed
initially and then. presented on its surface. The T-cells are
triggered. They divide; specific T-cells are recruited into
this area and the cells become activated, secrete a variety of
protein messengers, which activate other cells, including
macrophages, to come in and kill off these infected cells in
this area.

The cells that are activated include the local
macrophage population. Other cells are also recruited into this
area, including killer lymphocytes that we talked about earlier
that participate in so-called antibody-dependent cellular

87

 

 
 

 

cytotoxicity, and also natural killer cells; cells which kill by
direct contact, virus-infected cells. Next slide, please.

Turning briefly now to the interaction of the virus,
human immunodeficiency virus, with its target cells, the two cell
lines that are predominantly infected are T4 lymphocytes and
macrophages. Both these cells express this receptor CD4 on
their surface. The virus attaches to CD4, unenvelopes, and puts
its genetic material into the cytoplasm of the lymphocyte. Its
genetic material, you will recall, is ribonucleic acid, RNA, that
uses this unique enzyme -- called reverse transcriptase, to make
a backwards, single stranded copy of DNA off of the viral RNA
template. This simple strand of RNA is then complimented by the
host cell, and, ultimately, this double stranded DNA, provirus, -
gets inserted into the genetic material of the cell and becomes a
part of the genetic material of the cell. The provirus will sit
there until the cell is triggered or some other event causes
activation of the cell, at which time instead of doing the normal
business of the cell, this cell will produce many more copies of
the virus, become lysed. The liberated viruses then will go on
to infect other T4 lymphocytes and other macrophages.

In terms of an immune response to HIV, you will hear a
lot the rest of the afternoon about antibodies produced in
response to infection with this virus. During the process of
this virus infection, a variety of virus associated proteins are
uncovered and exposed to the immune system including parts of the
viral envelope, parts of the core of the virus and certainly
proteins associated with or coded for by the genetic material of
the virus, such as reverse transcriptase and the other
endonuclease enzymes that are present.

It should be pointed out, however, that some antibodies
have been found that if you have them in high enough titer, can,
in the test tube, at least, neutralize the virus. Our hope would
be that through immunization, one might raise a high enough titer
of these antibodies, to prevent infection. So, if we could
immunize someone and give him or her a high enough level of
neutralizing antibodies prior to infection, the virus could be
bound up and done away with without producing infection.

It also may be possible through the use of some
immunomodulating substances to rev up cellular immunity. In the
laboratory, one can demonstrate specific cellular cytotoxicity,
that is, cell killing, of virus-infected cells by T8 lymphocytes
from people that have been sensitized to the viral antigens.

That is a very quick tour through the human immune
system. We are now going to focus for the rest of this panel, on
the tests to detect antibodies to HIV. I give you Dr. Alfred
Saah, who will discuss in some detail the tests for anti-HIV
detection.

88

 

 
 

 

. DR. SAAH: Thank you, Mr. Chairman, Members of the
Commission. My testimony is essentially contained in the
briefing book. It is a chapter that I wrote on the serological
diagnosis of HIV infection that was published in a monograph by
the American Medical Association. What I will do this afternoon
is to -- rather briefly because I know time is short -- go
through the process of antibody detection in the currently
licensed ELISA kits and use that as a paradigm for the way in
which antibody is detected in the so-called confirmatory or
validation assays that are available. Chris, if we could start
with my slides.

Now, what happens during natural infection is that
first there is exposure to the virus through either sexual
intercourse or IV drugs. Infection is established. After
infection is established, antibodies are produced usually within
four to twelve weeks. We know this from studies of individuals
who have received contaminated blood and others with known single
exposures.

Following virus replication for a period of four to
twelve weeks, antibody is produced as the body’s response to
recognizing the invading virus. Next slide, please.

The enzyme linked immunosorbent assay is the assay that
is known colloquially as the ELISA or the EIA for
enzymeimmunoassay. What is done in this particular assay --
next slide -- is that HIV, the viral antigens that are grown up
jn cells, are broken up and put into little plastic wells. The
antigen, which is designated by the triangle, can be taken as a
generic form of HIV antigen. Next slide.

When the patient serum is added to the well, if there
is antibody present to the specific antigens of the virus, they
will attach in the bottom of that well. You might also note
that if the patient has sticky antibody or antibody that may
stick to plastic, that antibody will also stick inside that
well. But, for the most part, the idea, the premise behind the
assay is to measure antibodies that are specifically attaching
to the virus in the bottom of the plastic well. Next slide.

Now, what we have is the patient’s antibody attached to
the viral antigen in the bottom of the well. How do we find out
that that antibody is really there? We use a second antibody.
The second antibody is an antibody that is usually made in goats
and the goats are immunized against human being immunoglobulin,
so that the goat makes antibody to human immunoglobulin and can
detect human immunoglobulin that is attached in the bottom of the
plastic well. That antibody from the goat can be labeled, it can
be tagged and it is tagged with what is labeled up. there as these
"E’s" and those "E’s" stand for an enzyme. Next slide.

89

 

 
 

 

That antibody attaches to the human antibody and then
you need to give the enzymes something to work on. This
something to work on is substrate and the substrate can be a
substance that changes color if the enzyme is present. What you
do is allow the reaction to proceed -- next slide -- and then you
stop it and after you stop the’ reaction, you are able to read the
color development in a spectrophotometer; simply shine a light
through the well and measure the light that penetrates through
the well.

The process involves detecting antibody that is
directed against the virus and finding the color change if the
enzyme has had, first of all, established residence inside the
well and, therefore, worked on the substrate that you added. If
the individual who is tested does not have antibody to HIV, there
will be nothing for the goat antibody to attach to and there will
be no enzyme left in the well. There will be nothing left for
the substrate to work on and the test will be negative. Next
slide.

Now, that detection system is used in slight variation
for everything else that is used in detecting infectious agents
when you wish to measure antibody. The Western blot is simply a
slurry or soup of antigens that is in the plastic well, but they
are separated electrophoretically. They are separated by being
put across an electrical gradient and when the antigens are
separated, they are characterized by their molecular weight.

You have heard of antigens such as P24, P55, GP41.
Those numbers stand for thousands of daltons and a dalton is
something like 10 to the minus 24th gram. It is a very small
amount. And the "P" simply stands for "protein." The "Gp"
Simply stands for "glycoprotein" and those elements as you see on
the slide, although not very well because this slide is rather
small -- these elements are part of the virus. GP41 is the part
of the virus that is the transmembrane protein . GP120 is the
part of the virus that hangs off the edge of the virus and
attaches to the CD4 molecule.

P31, P51 and P66 are polymerases. They are enzymes
that the virus uses to reproduce its own genetic code. Those
antigens are identifiable on a Western blot -- can I have the
next slide, please -- because the antigens are separated and a
very similar detection system is set up to measure the antibody
in a Western blot, as in the ELISA. What we have here are
essentially paper strips that the antigen is blotted onto from
the gel. The gel is what is used to electrophoretically separate
the antigens and then the antibody is reacted on the paper in the
same way as it would be in the bottom of the well and then a
second antibody is added that has some kind of detection system.
The method for that detection system, to tell whether antibody is

90

 

 
 

 

there or not, the substrate, is added. If there are antigens
present in the specimen that you added, then you will find dark
bands on the Western blot.

The Western blot labeled A is a Western blot that is
tested against a serum specimen that has no HIV antibodies in it.
You see no bands on that Western blot. The label, Specimen B, is
a positive control and Specimen A is a control specimen from
someone who is known to be HIV positive. Those Western blots you
see have many bands on them and that simply means that the
patient’s serum recognizes the specific antigens that are on that
piece of paper and the detection system has allowed that antibody
to be developed in a way a photograph is developed. Next slide.

Now, this slide is an indirect fluorescent antibody
slide and it is another method of confirming or validating the
presence of HIV antibody. What this slide shows are cells that
are infected with HIV. They are either H9 cells or CEM cells. I
think they are H9 cells and they are infected with HIV and they
are put on a glass slide.

The individual who you wish to test for the presence of
antibody, you take that serum and you put it on this spot of
cells that are on that glass slide and then you use a second
antibody, much the same way as the process in the ELISA, only
the detection system is not an enzyme here. It is a fluorescent
molecule, so that when you look at this under a microscope with a
fluorescent light, you get this characteristic picture.

If you do not see that picture, then the specimen is
negative. So that the presence of antibody is detected, again,
by a system that allows you to develop, if you will, a picture;
only in this case, it is on a glass slide instead of on a piece
of paper or instead of in the bottom of a plastic well. So, the
fundamental process is the same for the detection of antibody.

It is simply amplifying a signal that you can detect, either with
your eye or with an instrument in order to say that there is
antibody against HIV in this specimen or no. Can I have the next
slide, please.

There is another technique called the
radioimmunoprecipitation assay. This is a highly complex
technique that requires radio labeling of the virus. It
requires five days of incubation on a piece of x-ray film and
what you are seeing there is the radio label of the virus and
the reacting antibody and what this procedure does is it reacts
to antibody and radioactive-labeled virus specimens and only the
pieces of the virus that are attached to antibody are separated
and put on the piece of x-ray film. The piece of x-ray film is
put away for five days.

91

 

 
 

 

When it is read, the radioactive label that is present
on the virus is the part that develops the piece of x-ray
celluloid below it and it is just simply another detection system
that because it is radioactive and because it takes five days to
develop is not used on a commercial basis. It is purely a
research project. I will have a little bit more to say after
Dr. Ascher’s testimony.

CHAIRMAN WATKINS: Thank you. Dr. Ascher.

DR. ASCHER: Likewise, I will try to be brief and give
time for questions. I prepared for the panel an outline, which
is in two forms; a sketch on the front and an annotated version
on the subsequent pages, which you can refer to. I am going to
try to hit each of the items, at least superficially, to provide
you with a starting point for further questions from the outline.
I can enlarge upon any of the items. It is a hodge-podge of
material.

The problem that Dr. Hendersen stated, which I can
restate, and the paradox of this disease, which is unusual among
infectious diseases, is that antibody equals infection equals
infectiousness. Now, for those of you that aren’t
immunologists, this is a little strange. You were taught that
antibody means immunity means recovery means resistance jand that
is the first paradox that we have to go through in terms of
getting an understanding of what is going on. That is the bad
news.

Now, the good news, and most of what I have td Say is
good news, is related to the state of the art of testing. Now,
if you have been confused or received conflicting testimony or
are trying to find out what is going on from the literature, a
lot of the confusion has cleared as of this point in time. A lot
of the issues in the literature up to today are being séttled at
this very moment and I will highlight some of them right now,
particularly in relation to test kit performance. I will: go
through some of the concrete examples of how tests work very
quickly. First slide, please.

Now, this is something that you may follow or may
confuse you as well, but what I have done is put two populations
on the screen; a negative population in blue and a positive
population in red and shown you that the frequency of these will
vary depending on the performance of the kit. An idealized kit
will separate those two populations completely from each other.
The next slide.

As you look at the way the test kit performs, depending
on where you set the definition for positive or negative, the
so-called cutoff, you can get any number of results. Next
Slide. The problem results will occur in that area between the

92

 

 
 

 

two populations where, as you can see, overlap is occurring.
Next slide.

What happens is as the true negative and true positive
populations overlap -- next slide -- and you generate the four
populations that are frequently referred to; the true negatives,
which are the blue ones below the cutoff, true positives, which
are the red ones above the cutoff and the two conflicting or
discrepant populations, the frequently mentioned false positives,
those specimens above the cutoff but not confirmed in this case
by immunofluorescence or the specimens which haven’t been
discussed very much, those specimens below the cutoff, but which
are really from infected people and could represent quite a
problem. So, the question for you is what does the actual data
look like. I thought that might be helpful. Next slide.

The actual data were bad news. In the first part of
1985, with our assessment of the original ELISA kits, you can see
with a cutoff of 1, there are a proportion of specimens over the
cutoff that are not confirmed positive; and a significant
proportion, as many as 2 to 3 percent, of true positives that are
missed by this test.

Now, if you go back to the literature, even things that
are published today, and think about how test kits perform and
try to get a straight answer, people will cite to you data based
on this original technology. That is not the present day
situation, and I will document that as clearly as I have ever
done anything. Next slide.

What we did in the summer of 1986 and subsequently is
we took a kit that had those original characteristics as a
starting point and took 200 positive sera and 100 negative sera
and looked at them and, as you can see, 8 sera are falsely
negative. Now, did anyone else worry about this? Well, if you
will remember in the blood banks, the specimens are considered
negative; the blood is used. In our public health situation,
with very high seroprevalence, these were specimens that would
have been missed. A lot of the problems in the literature about
the test performance is based on this old data.

Working with the manufacturer -- next slide -- the kit
was improved without a lot of hoopla, to give this change in
performance in the summer of 1986. A third licensure of the
same kit was issued in early 1987 and you can see there is a 2
logarithm improvement in separation to populations. This was
done without public notice. This is all very good news. Next
slide. Here is another kit manufacturer that had a very good
separation to begin with and with a minor change -- again,
without a lot of hoopla -- produced basically a perfect test.
Next slide.

93

 

 

 
 

OY

>

Recently, we ran this new reagent on a series of 2,000
consecutive sera from the San Francisco alternative test site
and this is the separation. I don’t know how much you
understand these graphs, but I can tell you that biologically
this is the cleanest separation of any test that has ever been
done by mankind for anything. That is a very clean separation.

The issue of false negatives or specimens missed is no
longer an issue. The issue of how close to the cutoff the
negative population comes and how many false positives one might
generate in the present situation, I will leave to further
discussion by Dr. Saah and Dr. Jackson but, as you can see, it is
a very, very clean separation and a big improvement. Some
people have asked right now what is the role for additional
tests, given the sensitivity of this issue, particularly the
antigen test to detect virus. We ran on this same exact panel
antigen tests and found no antigen positives in the negatives.
Zero. Only 6 percent of the positives were positive. So, it
does not appear at this point that antigen adds anything to an
already virtually perfect detection of positives.

A second bit of information, which again has not
received the attention it might have is that last spring or
almost a year ago, the FDA licensed a standardized method for
confirmation, of ELISA tests and this was one manufacturer’s
licensed Western blot.

 

It provided a standard against which all tests can now
be compared. Now, we don’t all agree as to whether it is perfect
at this point, but at least it has been a major breakthrough to
get people to agree on that in terms of what is going to be
licensed. It took about a year and a half to get something
licensed, but the licensing act itself was a significant step
forward.

The issue of the quality of the test and its
interpretation remained in the public health a very big problem.
Progress has been made last month at CDC when a Public Health
Service meeting was called of all the jurisdictions represented
at this table to discuss the interpretation of the kit, now the
standard, and some changes were made in the interpretation to
broaden its use in jurisdictions other than blood banks.

Now, you remember this and all the other tests are
licensed for blood and blood products only or primarily and those
of us in public health had a big problem with this complicated
procedure. But now to our satisfaction, we feel there is a
compromise document that covers interpretation of this result in
all situations, ranging from blood banks to high risk screening
and certainly cover the situation of seroprevalence testing,
which I am sure is on your mind.

94

 

 
 

 

[

We feel that in almost every situation a clear "yes" or
"no" answer can be obtained through this test or a combination of
tests behind that, that Dr. Saah went through. There should no
longer be the issue of unknown or indeterminant specimens.

The document resulting from this meeting should be
‘published in the Morbidity and Mortality Weekly Report in the
next few weeks and a copy will be given to your staff as soon as
it is available in draft. It is a very short document and to the
point. Dr. Allen is the staff for that from CDC.

At the same time at that Public Health Service meeting,
we had another bit of good news. A big concern in testing is
what we call performance evaluation. It is a new name for
proficiency testing. It is testing how labs do their job. CDC
had dropped that in many areas because it was not shown to be
cost effective.

A number of us in HIV testing were not so sure that it
shouldn’t be restarted. The good news is it has been restarted
with a vengeance. It is coming on very strong. That is very
good news. They have sent out their second panel and they are
going to see how things have performed. It is a very important
function and it is very nice that this is coming back.

The third thing is that the AMA, concerned about the
practitioners’ role in this, has commissioned a small panel --
two of us are here -- to work on putting a statement together
for practitioners, which should be out in draft in the next few
weeks and also will be available to this panel. It restates
some of the principles that the three of us have said so far and
tries to put some of this background information in writing.

The fourth thing is that the Association of State and
Territorial Lab Directors has met twice and next week will meet
for the third time to thrash over these exact same issues and a
document from that group will be forthcoming, which will be
referred to you for reference. These are all very timely
meetings.

The fifth thing in this section is that at this very
moment the FDA is holding a conference at NIH discussing the role
of new technology in testing. A document from that meeting will
also be available. There will be some issues settled at that
meeting tomorrow.

As far as California in particular, there are a couple
of new concerns that I would leave you with at the end. We have
been tweaked recently by the appearance of applications for home
testing kit. These are actually home blood collection devices
that would put specimens into the testing system. We are talking
about it a lot. We don’t know what to do yet and it does, as you

95

 

 
 

 

can, I am sure, imagine, add some new dimensions to the issue of
how do you find out who is tested or tests positive. We don’t
have an answer; a lot of discussion is going on.

A second concern is the second AIDS virus, the HIV-2
that hit the press a few weeks ago. There is no evidence of
HIV-2 other than a visitor to New Jersey. We are looking
actively around the country daily. You will know about the next
one as well when it comes.

The last concern -- and this is something that the
panel may have to consider as a jurisdictional matter -- the
first of the human lymphotrophic viruses, HTLV-1, is not a cause
of AIDS. It does, however, pass by the same mechanisms between
risk groups, particularly among IV drug users. We have some
recent information that has come out of California that at this
point in time the seroprevalence of this virus in drug users may
exceed the seroprevalence of HIV by a factor of 7.

We don’t know really what to do or where this matter
Should be referred. Next week, in Kansas City, at the Lab
Directors Meeting, a whole day will be given to this topic, but
this is of great concern, particularly as it impacts on blood
banks in terms of the screening for it. I will stop at this point
and pass on to Dr. Jackson.

DR. JACKSON: Thank you for giving me the opportunity
to testify before this Commission regarding the accuracy of HIV
antibody testing, of populations at low risk for HIV infection.

Recently, there has been testimony before a House
subcommittee by Lawrence Miike of the Congressional Office of
Technology and Assessment in which he testified that the
estimated false positive rate of screening Midwestern blood
donors with the enzyme-linked immunosorbent assay or EIA in
conjunction with the Western blot for HIV antibody may be as
high as 80 per hundred thousand dollars; 80 false positives per
hundred thousand donors. Based on this estimate one would
expect 200 false positive HIV antibody results in screening
250,000 Midwestern blood donors.

However, I am here to report that actual, not estimated
but actual HIV antibody testing of approximately 580,000 blood
donations from 250,000 different Minnesota blood donors did not
result in even one false positive HIV antibody result; let alone
the 200 as estimated would occur by this recent testimony.

To be more exact, three Minnesota blood collection
facilities screened approximately 580,000 blood donations from
250,000 different Minnesota blood donors from March of 1985 to
September 1987 for HIV antibody using different licensed
commercial EIA kits and Western blot for confirmation. During

96

 

 
 

 

this time, 15 donors tested positive for HIV antibody as
evidenced by a repeatedly reactive EIA and a positive Western
blot.

To examine whether there were any false positives in
this group, we obtained blood from 13 of these 15 donors for HIV
culture; all specimens were culture positive. The two
HIV-antibody positive donors who were not available for
follow-up culture admitted to having risk factors for acquiring
HIV infection and one had developed symptoms of HIV infection at

the time of follow-up interview.

These results demonstrate that the combined false
positive rate for HIV antibody testing, utilizing the EIA
screening test and Western blot is extremely low, at least in our
population less than l in 250,000, even in these very low risk
blood donors. Remember, these are donors who have already been
screened for high risk factors or who have denied having any high
risk factors for acquiring HIV infection.

Now, our results are similar to those reported by Dr.
Donald Burke of the United States Army in which he found only 1
in 135,000 Army recruits had a false positive HIV antibody test
utilizing the EIA and Western blot in sequence. Likewise, in a
recent proficiency testing program conducted by the College of
American Pathologists, none of the 83 participating laboratories
would have reported a false positive test result when performing
the EIA and Western blot in sequence.

In terms of false negatives, the College of American
Pathologists’ survey reported that 0 to 0.5 percent of 616
participating laboratories incorrectly reported a truly positive
sample as nonreactive, using the EIA screening test. Or in other
words, 99.5 to a hundred percent of the laboratories correctly
identified samples positive for HIV antibody with the EIA
screening test.

Based on the above data, I believe the sensitivity of
the EIA screening tests is extremely good and that the risk of a
false positive antibody using the EIA and Western blot in
sequence in an experienced laboratory is much lower in practice
than previously estimated. Nevertheless, I want to emphasize
the HIV antibody testing should be performed by a laboratory
with demonstrated proficiency. The Western blot in particular
is difficult to perform and it is not always easy to interpret
even for experienced laboratories. This difficulty has been
lessened somewhat by the licensed kit. Furthermore, not all
laboratories use the same criteria that indicate a positive
Western blot and, at present, there are no standards or
regulations to assure that laboratories are proficient at HIV
antibody testing.

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Therefore, I conclude that while HIV antibody testing
of low risk populations is extremely accurate when performed by a
proficient laboratory, I recommend that widespread testing of
low risk populations be undertaken only if the testing is
performed by a laboratory which participates in a reputable
proficiency testing program and demonstrates proficiency at this
testing on a regular basis. Thank you very much.

CHAIRMAN WATKINS: Thank you very much, Dr. Jackson.
Yes, Dr. Saah.

DR. SAAH: There was a bit more testimony that I wanted
to give. I wanted to follow Dr. Ascher, but I can give it now.
It is only a couple of minutes.

CHAIRMAN WATKINS: Very short?

DR. SAAH: It will be, I promise.
CHAIRMAN WATKINS: All right. Go ahead.
DR. SAAH: Next slide, please.

About a year ago, the AMA asked me why a test that was
99 percent sensitive and 99 percent specific was wrong 95 percent
of the time. So, I had to put together something to talk to a
rather large group of people to describe this phenomenon. I
think it is relevant insofar as what Dr. Jackson just said.

The sensitivity of a particular test is that when the
test is done, it provides a positive result when infection, read
condition, is present. Next slide, please.

The specificity is when the test is negative when the
condition is absent. Next slide.

What I did was devise an example where we used a breath
analysis instrument. Let’s get away from HIV. Let’s get away
from antibodies and infection. We are going to talk about a
breath analysis instrument, a breathalyzer for alcohol. The
instrument is 97 percent sensitive, which means it will call 3
percent sober, who are actually drunk. It has a specificity of
98 percent, which means it will identify 2 percent of people who
are sober as intoxicated. Next slide.

: The test is performed in a population of 2,000
conference attendees at 10:30 in the morning. Two of the
attendees are intoxicated. The proportion is .1 percent at 10:30
in the morning. The sensitivity of 97 percent means that we
could identify many more intoxicated individuals than we actually
have in the audience. But the specificity of 98 percent means
that we are going to identify 2 percent of 1,998 sober

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individuals at 10:30 in the morning as intoxicated; 2 percent of
that number is 40.

' We identified the 2 who are intoxicated, but we also
mis-identify 40 sober individuals as being intoxicated at 10:30
in the morning, giving us a result that when the test is
positive, it is correct only 5 percent of the time. Next slide,
please.

Same population, 12 hours later. It is 10:30 at night.
The 2,000 conference attendees have had an opportunity to have
dinner and several glasses of wine, martinis, et cetera. Five
hundred of them are now intoxicated. Same test, same population,
different prevalence of alcohol. In this instance the 97 percent
sensitivity means that you would identify 485 of the 500 as being
intoxicated correctly. You would miss the 3 percent, the 15
individuals, and you would identify 2 percent of the remaining
1,500 unintoxicated individuals at 10:30 at night, giving you a
predictive value for a positive test when you add the 30
individuals from the sober group to the 485 from the intoxicated
group of 94 percent or 485 out of 515 individuals.

Now, the distinction that is necessary to draw and the
reason why I felt it was important to go through this example is
because if you prequalify your population, you make the
performance of the test appear much better. If instead of
walking into the room at 10:30 in the morning and screening
every one of the 2,000 individuals, you first ask them to walk
heel to toe or you ask them to recite the alphabet, you could
eliminate a large part of the group and make the test
performance a lot better and it is the notion of a testing
program as opposed to a test that is vital here.

What Dr. Jackson described when the low rate of
seropositives is the result of a screening ELISA, a follow-up
Western blot done in proficient hands and in Dr. Burke’s case,
in the Department of Defense, a recombinant protein assay that
confirms both the Western blot and the ELISA, the difference is
a program of testing as opposed to a single test.

This is what will happen when you apply a single test.
The performance of the test will vary enormously according to the
prevalence of the condition that you are studying, but if you add
successive tests, what you end up with at the end are very clean
results. So, it is the program that you need to focus on, not
the specific test.

CHAIRMAN WATKINS: Not being an expert in the field,
Dr. Saah, I really need to understand. Are you saying the same
thing that Dr. Ascher is saying or something quite different?
DR. SAAH: No, the same.

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CHAIRMAN WATKINS: It is a program and yours is a
program. And, Dr. Jackson, are you saying yours is a program?

DR. JACKSON: Yes. ~

CHAIRMAN WATKINS: Are we drawing some conclusions from
this, though, that there are no more false positives and no more
false negatives and we don’t need to worry about that issue any
more? Is that what I should conclude from this?

DR. SAAH: What I am saying is that given laboratory
testing in proficient hands, with good assays, that the amount
of false reactions can be reduced to very small levels. Now,
this doesn’t speak to the advisability of screening in any
particular setting. What this speaks to is the potential for
confusion that frequently comes up in this type of setting when
individuals are describing false positive rates, based on
essentially a single test, as opposed to false positive rates,
based on a program of testing.

A good example is Dr. Redfield’s testimony and Dr.
Burke, where they cited two false positives in 135,000
individuals, who were negative. That final result came from a
series of tests. The series of tests is similar in nature to
prequalifying the population. In other words, instead of doing
the breathalyzer test on everyone, you ask them to perform a
particular maneuver to screen out those who you really don’t want
to test.

What this ends up doing is enriching the population for
individuals that you wish to test and also by having successive
points at which you cut individuals, because that is what all
successive tests do if they cut individuals from the group, your
test performance improves.

CHAIRMAN WATKINS: I guess I. am confused as to whether
we are at the point where that is the current situation that
prevails in society as a whole today or whether this is
something that you are about to give birth to on a new standard,
on a new approach, on a program of testing, which is about to be
born in the United States, which can eliminate the issue of false
positives and negatives. I am really still having a hard time.
Where are we in the presentation at this point? Are you coming
up with something in a few weeks --

DR. ASCHER: No. You asked the question and the answer
is we are here right now today.

CHAIRMAN WATKINS: We really don’t have the false
positives and negatives anymore?

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DR. ASCHER: Yes. We are talking technical. We are
talking about the capability of the tests to perform in good
hands. If there are any problems in the overall program, it is
not in the tests or their interpretation. However, it is our
estimate at this point that other factors in testing, such as
mislabeling of specimens, distributed mode, non-proficient
laboratories may produce wrong answers, nothing to do with the
tests, at a rate equal to the seroprevalence in the population,
making the numbers of such a study difficult to interpret for
those reasons.

It has become clear that in the presence of perfect
technical tests from an individual, who is low risk, the
probability of that result, being a specimen mix-up rather than
a true positive is so high, that it is the community standard to
always obtain a second specimen from that individual, as the
military does. The military is working with perfect tests
technically, but it happens frequently enough that they do not

confirm someone as positive unless there is a second specimen.

We haven’t yet heard any feedback from the states that
are working with premarital screening, whether that is an issue,
but it would be our estimate that if there is any fault in the
tests, it is not at the level of the reagents themselves. I
think we are going to put that to rest.

Any comment, Dr. Jackson?

DR. JACKSON: Just to reiterate, if you do the EIA
screening test, how it is supposed to be done by the
manufacturer’s directions and follow that with a Western blot or
an immunofluorescent assay, which is another confirmatory test
and then if it is positive still, one gets another specimen just
to rule out a specimen mix-up, a sample mix-up. This happens
rarely, but it could happen. I think if it is done that way, I
think the test is extremely good and also, like I said,
laboratories that are doing these tests actively participate ina
proficiency testing program and demonstrate proficiency on a
regular basis through a program such as the College of American
Pathologists --

CHAIRMAN WATKINS: Has such a program now been
instituted nationwide in which all of the technical people agree,
cbc, you are all together. You are now doing this out there so
we can say there are no more false positives and negatives?

DR. HENDERSEN: It is important that the tests are good
at doing what they do --

CHAIRMAN WATKINS: Okay. Let’s write that off and say
the tests are superb. Now, there is always cockpit error and
there are always quality control issues. There are laboratory

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differentials. We have found it in the military. We had to
clean up a big act. Now, the question is are the other variables
such that we have to worry about false positives and negatives?
It has nothing to do with the test.

DR. HENDERSEN: Yes. There are people, who are in the
process of developing antibodies, who are infected and
infectious, who will not be detectable using the currently
available antibody tests because they rely on the person who is
infected producing antibodies on his own.

In that time from infection until you can detect those
antibodies, those people will be falsely negative, strictly
speaking. Now, they are not detectable. That is not something
wrong with the test, but they are infected and infectious and
not detected by these screening tests.

DR. SERVAAS: That is only false negatives, not false
positives.

DR. ASCHER: We have a number on that you might want to
be aware of. Actually, it was an estimate that we feel has some
substance. It is what proportion of positives nationwide would
be missed because of that factor. The upper limit of that is 2
percent. That is an important number. I don’t want you to think
about it too much, but what it means is that the tests
biologically have a sensitivity of about 98 percent and that is
based on the fact that about 2 percent of people who are infected
are sort of getting into that short period. So, it is pretty
darn good.

CHAIRMAN WATKINS: I don’t want to hog the podium here
but it was difficult for me to sit through the presentation
because I am not technically oriented on it sufficiently to know
what message we were to receive from this. It is still hard for
me to grasp where we are. For whatever reason -- let’s give you
a hundred percent for the test, but are there other problems in
the system so that we aren’t ready at this point in time to say
that we simply have eliminated all the kinks. Whether it is
quality control, personnel, training, that we haven’t followed
the exact protocol, that we still have a number of performance
errors in the system, other than testing, so that we can’t rely
on them today -- What is the problem?

DR. SAAH: Part of the problem that I have had as a
clinician and an epidemiologist has been employing FDA criteria
for a Western blot that was essentially licensed to re-enter
blood donors into the system. The interpretation of the Western
blot is a vital component of the use of these tests.

As Dr. Ascher pointed out, we are in the midst of
devising criteria for the interpretation of the Western blot that

102

 

 
 

 

should clean up the large group in the middle, which have been
called indeterminant; individuals who don’t meet FDA criteria for
being called seropositive or infected with HIV and individuals

who don’t meet FDA criteria for being negative, which means
having no bands whatsoever on the Western blot.

The Western blot, as it is licensed for the re-entry of
blood donors is a highly, highly sensitive test to the extent
that in the package insert it says that 15 percent of normal
individuals are expected to have a band on the Western blot
nonspecifically. These are not individuals who do not --

DR. ASCHER: I think we are getting two messages here
and I think you are confused because Dr. Jackson said that we are
beyond the problem of false positives. I said I am beyond the
problem of false negatives and yet we are hearing about problems
with interpretation. What we are saying is the false positives
are gone; the false negatives are gone, but what we were left
with as the state of affairs until recently was an indeterminant
category where they couldn’t tell you what you were. And that is
in certain situations just like calling someone positive. That
has been a problem for about a year.

False positives and false negatives have been gone for
a year in my mind. That is old hat. Forget about that. It is
the fact that so many people ended indeterminant equal to
seroprevalence, so the test was worth a toss of a coin, if you
will, and it had no meaning. These new criteria represent a
breakthrough in clarifying that problem; false positives, forget
it; false negatives; forget it; getting the indeterminants
classified and Dr. Jackson -- to clearly answer your question,
Dr. Jackson was referring to test interpretation using the new
criteria.

DR. SERVAAS: What did Dr. Jackson do with
indeterminants?

DR. JACKSON: Okay. I know at our blood center at the
St. Paul Regional Red Cross, we tested over that time period
500,000 donations from about 170,000 blood donors. And we came
up with about 1,500 repeatedly reactive by EIA. Of those 1,500,
200 were labeled as indeterminant. So, about 1 out of 2,500 ina
low risk population were labeled as an indeterminant. Or, in
other words, if they were EIA repeatedly reactive, about 12
percent of those were indeterminant.

DR. ASCHER: And the 1,300 were false positive ELISAs
but the Western blots are now considered negative.

DR. JACKSON: And out of that 1,500, I think we had 13
that were -- I am sorry -- there were 11 that: were Western blot
confirmed positive. So, in other words, the risk of a false

103

 

 
 

 

positive, being told you really are a positive, when you are not
we didn’t have -- well, we didn’t have any.

DR. SERVAAS: But out of 580,000 blood tests you had
not one false positive in a very low risk population?

DR. JACKSON: That is correct.

DR. SERVAAS: And 250,000 different people --

DR. JACKSON: That is correct.

DR. SERVAAS: -~- you tested had not one false positive?

DR. JACKSON: Not one false positive. We had some
indeterminants in there, a couple hundred indeterminants.

CHAIRMAN WATKINS: Thank you very much. We are going
-- we are running late and we would like to be able to ask you
any questions that the Commissioners may have by letter and
correspond with you and keep the dialogue between us open as the
Commission continues its work. Thank you very much for coming
today.

The next panel is going to be a panel on testing,
counseling, and contact notification as preventive measures.
Dr. Thomas M. Vernon, Executive Director, Colorado Department ‘of
Health; Jeffrey P. Davis, State Epidemiologist, Chief, Section of
Acute and Communicable Disease Epidemiology, Bureau of Community
Health and Prevention, Wisconsin State Department of Health and
Human Services; William C. Myers, Health Commissioner, Columbus
Department of Health, Columbus, Ohio and Dr. H. Hunter
Handsfield, Medical Director, Seattle-King County Department of
Public Health, Sexually Transmitted Disease Program, Associated
Professor, University of Washington Medical School. Welcome to
the Commission and we will start with testimony from Dr. Vernon.

DR. VERNON: Thank you, Mr. Chairman. I am Dr. Tom
vernon, the Executive Director of the Colorado Department of
Health. I am also Associate Clinical Professor at the University
of Colorado Health Sciences Center with appointments in Internal
Medicine and Preventive Medicine and I am the President-Elect of
the Association of State and Territorial Health Officials.

I am honored to be here today and I am especially
honored to testify before my esteemed colleague and very good
friend, Kristine Gebbie.

Much attention has been paid to Colorado’s program
since November 1985, when we became one of the first two states
to require the reporting of the serologic tests for HIV. Our
program has been described as a model by some; it has been

104

 

 
 

 

severely criticized by others, but whether it has been labeled a
model or some less flattering term, the fundamental question for
us is whether we have found the balance for public health
intervention, which appropriately protects both the public’s
health and the rights and the confidentiality of individuals.

There have been three promulgations in Colorado which
have characterized or at least highlighted our program. The
first was the State Board of Health regulation in November of
1985, which added the serologic tests for HIV to a long list of
reportable communicable diseases.

The second, the city of Denver was the regulation of
bath houses and other public places where HIV transmission is
potentially facilitated. The third and I believe the most
important historically was the legislation passed in Colorado
and signed by the governor in June of 1987. I would like to
comment briefly on that legislation, which was called House Bill
1177 when it was first introduced.

The primary purpose of that legislation was to protect
the confidentiality of the reports which were required to the
public health agencies. That legislation contained language
developed by the Centers for Disease Control a number of years
before for protecting the confidentiality of sexually transmitted
disease reports. Our legislation protects the public health
records against "subpoena, discovery proceedings, search warrant
or otherwise." No testing may be done of any individual without
the consent of that individual, with a few very specific and
uncommon exceptions; one of which, incidentally, is the testing
of unlinked blood specimens as in a newborn testing program,
which we are launching in Colorado. There are very stiff
penalties in this legislation for an individual who
inappropriately releases public health records.

The second purpose of our legislation was to clarify
and, in fact, limit the quarantine and isolation authorities,
which were given to the Executive Director of the State Health
Department back in 1947. This legislation had no explicit due
process and no explicit appeals process. I won’t dwell on that
for lack of time.

Now, the criticisms of what we have done, which I will
speak to simplistically for purposes of brevity, have been
essentially three. One is that our reporting requirements added
additional risk to the confidentiality of individuals and,
therefore, added the insult of further discrimination to a
homosexual community, already injured by the epidemic itself.
Now, not just as an aside, but as a fundamental point, let me
note again, that discrimination because of its influence upon
our ability.to attack this epidemic is a serious public health
problem. If only we could deal adequately with the existence of

105

 

 

 
 

 

discrimination (and, of course, the fear of discrimination) we in
the public health could be far more effective in dealing with
this epidemic.

The second criticism was that gay men would go
underground, would not be tested. Then, of course, the third
criticism is that there would be no efficacy to this kind of
program. In short, there would be risks taken but no benefit
from that risk. Our experience to this date is very different
from these fears and the concerns of those who criticize our
program. I would like to outline a few of our experiences.

I do want to comment that it is early and that final
judgment of what we are doing must await a longer perspective
than we yet have. But at this point there has been no breach of
confidentiality of public health records in Colorado and there is
no active discrimination of which we are aware that could be
traced to those records or to the recording system itself.

Concerning individuals coming in for testing, in 1986,
Colorado tested more individuals per capita than all but 46
other states in a poll we conducted. I would like to refer you
to a page, the next to the last page, in the handout. Note the
graphic, which compares testing in Colorado and California. It
is clear from that graphic, first, that through mid 1987
Colorado consistently tested 20 to 40 percent more individuals
per capita than did California and that the variations from
month to month appear to be due to factors which are common to
both states factors and not due to the factor of anonymous
testing versus confidential testing.

So, to this point, nothing in our experience suggests
that either there have been increased risks or that individuals
have stayed away from testing, at least in large numbers. The
area in which I am most pleased to observe in the report is in
the results of our program, its efficacy. Let me mention two or
three areas. The first concerns the 10 to 15 percent of
individuals with positive tests who do not return to the testing
sites for their results. We are able to locate about 75 percent
of them in the field and to provide the counseling, which is so
important, whether or not they choose to learn the actual results
of the tests. And, of course, the results are not forced upon
them.

The military report to us in Colorado, including the
military recruiting stations. Our field staff follow each
rejected military applicant with a positive test and provide
skilled counseling, in a civilian environment.

The third area (and I am most pleased with this) is the
efficacy, at least at this point, of our partner notification
program. We are very committed to partner notification (contact

106

 

 

 
 

 

qy ,

notification). I provided in the last sheet of my handout a
graphic which shows you some early data; 282 infected individuals
interviewed by our staff revealed 508 individuals who had been
partners in unsafe sex or unsafe IV drug use. We were able to
locate 414 of those individuals, all of whom were counseled or
recounseled. There were 296 individuals, who came to testing for
the first time and of those, 45 or a high 15 percent were
positive.

Now, in closing, I want to anticipate what I am sure
will be one or more of your questions. I have also been asked
this question by a congressional staffer, who was interested in
what I was going to have to say today. Is this Colorado model as
applicable to Newark, New Jersey, as it is to New Castle,
Colorado?

Probably not. Should this kind of a program be
mandated by federal legislation or by strings attached to federal
grants? No. But I would like to elaborate briefly.

We believe that confidential reporting of communicable
disease has served us extremely well for virtually a century.
We believe that reporting of HIV infection should be much more
widely adopted in this country than it has been to this date,
but I do not believe that the Federal Government should mandate
that reporting anymore than it has mandated other reporting of
communicable diseases, particularly by name.

I believe that it should be the state health officers
in consultation with their disease control officers and the local
health officials of their state, who should be making those
decisions.

Lastly, I believe that partner notification becomes a
moral imperative. I feel very strongly that we have an
obligation to warn unsuspecting partners in unsafe sex or IV drug
use.

Now, another question is whether confidences are
inappropriately revealed when partner notification occurs.
Fortunately, we rarely have to make such a stark choice when we
are conducting partner notification programs. The skills that
our disease investigators learn in facilitating this process
makes it a rare occurrence when there is an inappropriate
revelation of a confidence.

I do not believe.it is the place of the Federal
Government or any government to mandate the notification process
and I was pleased to hear the debate with an earlier panel today
on that very subject. Just as this process is inherently
confidential, it is also inherently voluntary. And I think that
the loss of voluntariness in partner notification would undercut

" 107

 

 
 

 

the very basis upon which we make that process work. And as a
last sentence, I must say it is a process which needs funding.
Thank you.

CHAIRMAN WATKINS: Thank you very much, Dr. Vernon.
Dr. Davis.

DR. DAVIS: Thank you very much, Mr. Chairman, Members
of the Commission. I will be limiting my comments to the general
area of contact notification. I do want to thank you all for the
opportunity to provide both verbal and written testimony.

Contact notification historically has been a method for
controlling sexually transmitted diseases by locating and
referring sexual partners for evaluation and treatment as early
as possible to reduce the spread of infection, prevent
complications and interrupt the transmission cycle of the
infectious agent.

As applied to the prevention and control of HIV
infections, critical goals are to interrupt HIV transmission,
particularly by those unaware of their HIV infection and risk
status, to provide individualized counseling and to facilitate
referral to knowledgeable health care providers of those who may
require additional medical evaluation and treatment. The primary
tools to prevent and control HIV infection are educational
programs for the public and health care providers focused on risk
reduction and disease prevention and provision of counseling,
disease prevention, and HIV antibody testing services.

However, some people, ignorant of their HIV risks, will
be missed by mass messages. Others will choose to ignore risk
reduction messages, while falsely perceiving their risks to be
negligible or non-existent. Thus, no strategy to control HIV
spread is complete without a companion activity that delivers a
personalized, yet fully objective risk reduction message directly
to individuals at maximum risk of HIV infection.

Achieving the goals of interrupting HIV transmission
requires HIV infected individuals to participate extensively in
the referral of partners. However, such participation will not
always be possible. Thus, it is critical to establish a
rational plan in each state to provide partner notification and
referral services compatible with state laws and resources.

The rationale for initiating such programs is
multi-faceted and I have provided a long rationale in the written
testimony, but I will provide a few examples. First, learning
about a personal potential HIV infection is likely to be an
overwhelming event for some. Sexual or needle-sharing partners
may be angry, may be hurt or even become violent when confronted
with the knowledge that they have been exposed to an HIV-infected

108

 

 
 

 

individual. Describing the implications of such exposures and
details regarding available counseling and testing may be too
complicated for some to grasp, let alone convey to their
partners.

Second, due to diversity in training, experience and
resources, health care providers are generally not well-equipped
to notify sexual and needle-sharing partners likely to be outside
of their practices, regarding the HIV risk of those partners.
Notification of partners at risk only by providers would result
in serious lack of uniformity regarding provision of notification
services. Also, potential breaches in patient confidentiality
could occur and compromise to the credibility of provider care
and public health systems could also occur. Third, the demand
for contact notification services is high. Anecdotally, many
requests for such services have been made to public health
agencies and to counseling and testing site personnel by clients
who experience or expect difficulty in notifying some or all of
their contacts and also by physicians. In a random survey of
Wisconsin physicians, 83 percent of nearly 600 survey respondents
thought local or state public health agencies should assume
responsibility for partner notification, 12 percent thought the
primary physician should be responsible and only 1 percent stated
no one should notify partners of HIV-infected persons if the
HIV-infected individual is unwilling to do so directly.

A fourth example, many whom are not familiar with
contact notification mistakenly believe the process is not
compatible with confidentiality. In the United States, thousands
of individuals daily are notified by STD workers of exposure to
one or more STDs and accept that information even though it is
conveyed by persons not previously known to them and the source
of the infection is not revealed during the process. The
confidentiality of the source is the key to the success of the
process. In fact, individuals informing their own partners can
provide a greater risk to their own confidentiality if their
partners talk to others.

Three principles of partner notification are that the
services are voluntary, confidential and accessible. Partner
notification programs should generally be voluntary for persons
identified and reported to the program. Services must be
confidential. All records must be maintained confidentially.

The index patient must not be identified to named
partners and partners’ names must be used only for the purposes
of field investigation and notification. When possible, all
identifying partner information should be destroyed upon
completion of the investigation and statistical summaries should
be used to evaluate program efficacy. Services should be
accessible for those persons with validated positive HIV antibody
or antigen tests and for persons with AIDS or ARC reported to

109

 

 

 
 

 

health departments. Categories of individuals to be notified
include male and female sexual partners and/or needle-sharing
partners of HIV-infected persons; children born to women
identified as HIV-infected; recipients of blood, semen, body
organs or other tissues donated by HIV-infected persons; and, in
some states, persons directly exposed to blood or body fluids of
an HIV-infected individual through provision of a service, such
as emergency medical care.

The Oregon AIDS Task Force has recognized that persons
most likely to unknowingly transmit HIV to others are those not
perceiving themselves to be at risk of HIV infection. Such
persons include children of HIV-infected mothers, female sexual
partners of closeted bisexual males, victims of sexual abuse or
rape, recipients of blood from HIV-infected persons, sex
partners of closeted IV drug users and persons who continually
invoke high risk behaviors, but deny they are personally at
risk. Contact notification services should provide a special
focus on referral of such individuals when other services do not

apply.

To date, little cost benefit is available on contact
notification programs and some of the novel programs have yet to
be fully evaluated. In Virginia, through December of 1987,
among 318 sex or needle-sharing partners referred to STD clinics
for HIV testing, 72 percent were gay men, 15 percent IV drug
users; 40 percent were partner referred and 60 percent were field
worker referred; 13.8 percent were HIV seropositive. During the
parallel time frame, of over 41,000 pre-counseled non-referred
individuals who presented at STD clinics for STD services, nearly
15,000 were tested and 3.2 percent of those tested were
seropositive. Thus, in Virginia, the referred partners of known
HIV positive individuals are four to five times more likely to be
HIV seropositive than non-referred clients presenting for STD
services.

Dr. Vernon has summarized the Colorado data and I won’t
to through those numbers, except to say in talking with his
staff, there was an additional figure that I was provided. If
you look at their cost data and utilize non-start-up personnel
costs, plus the costs of collecting blood specimens in the field,
the costs of detecting each previously undetected HIV infection
waS approximately $530.00, which in relation to a lot of other
programs to screen for positive individuals is a very low cost.

Since you have heard about the duty to warn ina
previous panel, I will not present further testimony now except
to say that duty to warn policies will impact greatly on partner
notification programs.

In most states services similar to contact notification
have already been provided through blood center look-back

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activities involving recipients of blood or blood products
obtained from known HIV-infected persons and also through
follow-up of no identified risk AIDS patients. So, the expertise
is there. There may not be that many people with the experience,
but certainly trainable persons and the ability to expand these
programs are certainly there.

One additional point I want to make is that when
contact notification programs are being developed, it is very
critical to develop broad-based support of individuals and groups
that are likely to be impacted by such programs. Thank you.

CHAIRMAN WATKINS: Thank you, Dr. Davis. Mr. Myers.

MR. MYERS Admiral Watkins; distinguished Members of
the Commission, I am Bill Myers and I have been Health
Commissioner in the City of Columbus for the past eight years. I
would also like to acknowledge in the chamber today Dr. Teresa
Long, who is Medical Director of the Columbus Health Department.
Questions could also be addressed to her later if the Commission
desires.

Columbus is a low incidence area for AIDS with 132
persons diagnosed and reported in Columbus and Franklin County
since our first reported case in June of 1982. Those of us who
are fortunate to be local health officers in low incidence cities
are awaiting the recommendations of this Commission with great
expectancy, for I believe Columbus and other similar cities have
the opportunity to avoid a crisis of the magnitude that has
afflicted many of our colleagues.

We can stop this epidemic if' we can agree on a national
strategy based upon scientific evidence, rational and humane
thinking and solid public health principles. The plan needs to
recognize and foster a public health partnership between the
federal, state and local levels, a plan that will build upon the
strengths of each level.

Discussing the roles that testing, counseling and
partner notification play in the prevention of HIV infection, I
want to repeat our basic premise as stated in our written
testimony and that is in the absence of a vaccine, a cure and
effective treatments, behavior change is our only line of defense
for the management and prevention of HIV infection. Our efforts
to stop the spread of this disease must focus on eliminating a
person’s risk behavior. Testing, counseling and partner
notification are methods to achieve that end. Because of our
obvious time constraints I will highlight only a few of our
recommendations in each topic area. I would like to begin with
counseling, for it offers, in my judgment, the greatest
opportunity at present for interrupting the transmission of this
virus.

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Quality counseling provides a unique opportunity for
intensive, specific and individualized interactions with a
person. All counseling programs should be required to have an
active quality assurance component. Additional resources need
to be provided for community counseling programs and for the
hiring and training of AIDS counselors to staff them.

While counseling can stand alone as an intervention
strategy, testing cannot. Testing must always be accompanied by
appropriate pre and post test counseling, must provide for
informed consent and must remain voluntary. I believe we must
move toward offering confidential testing, but only after states
enact strict confidentiality statutes, with criminal penalties
for those who violate them.

We must also enact antidiscrimination statutes to
protect the basic rights of those who are HIV positive or have
ARC or AIDS. IN my judgment, this cannot be left to the states.
The Federal Government should protect these individuals as we
have offered protection for all of our citizens against race,
sex, age, and other forms of discrimination.

Even as we resolve the obstacles to confidential
testing, and we are resolving them, we should maintain support
for anonymous counseling and testing sites as alternatives for
those individuals who may shun a more structured system. Taking
a proactive approach to breaking the chain of HIV infection by
allowing those who have been exposed to the virus to have
knowledge of that exposure is now a Columbus Health Department
priority.

This statement is the essence, I would submit, of
partner notification. Partner notification methodologies have
been successful as intervention strategies in the control of
communicable diseases in this country. Although we are just
beginning these partner notification efforts in Ohio, I believe
we must accelerate the implementation of formal partner
notification programs throughout the country, but we must first
resolve the confidentiality and discrimination issues and we
must educate the leadership of the at risk communities to support
this effective public health approach.

Partner notification can be done in a professional and
sensitive manner by first encouraging the person with the HIV
infection to notify their own sexual partners. This takes
counseling of the infected patient and providing the support
needed by’ that patient to take that difficult step. If the
patient is unable to notify their partners, health department
services must be available and offered. Clearly, if we are going
to offer and aggressively market, if you will, routine counseling
and HIV antibody testing in sexually transmitted disease, family

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EE

planning, drug treatment clinics and other facilities where high
risk behavior individuals are likely to be seen, then additional
resources at all levels of government will be needed.

The magnitude of the AIDS epidemic has forced local
health departments to rob valuable human and treatment resources
from other needed public health programs. Admittedly we can and
we have adjusted some priorities, but we cannot afford to ignore
other communicable disease, perinatal, nutritional, environmental
and a host of other public health programs. If we do, I submit,
they will just come back to bite us.

The President’s proposed budget, I might submit, is a
very positive step toward providing -- at least beginning to
provide a realistic level of resources in this country.

We can conquer this epidemic. As I mentioned early in
my remarks, we need a national plan. It must be given priority,
which includes adequate resources and we must not allow ourselves
to be sidetracked from what we know is sound public health
practice by spurious and emotional arguments.

Members of the Commission we are here to help you.
Local health departments have worked and have demonstrated the
fact that we work well with our state and federal counterparts
and we would ask that local health departments be included in the
formulation of this national strategy and that the plans
certainly have allowances for local flexibility and leadership.
We are here to help. We ask you to call upon us. Thank you for
the opportunity to testify, Mr. Chairman.

 

CHAIRMAN WATKINS: Thank you very much, Mr. Myers.
Dr. Handsfield.

DR. HANDSFIELD: Thank you, Mr. Chairman and Members of
the Commission. My name is H. Hunter Handsfield, M.D. I am the
Director of the Sexuality Transmitted Disease Control Program for
the Seattle-King County Department of Public Health in Seattle
and Associate Professor of Medicine and Epidemiology at the
University of Washington School of Medicine.

I appreciate the opportunity to articulate my views and
those of the Seattle-King County Department of Public Health on
the issue of disease control through testing, counseling and
partner notification.

I will spend most of my time talking about the partner
notification issue because I think that is one that falls
directly from some of the principles of testing and counseling
that have been discussed at greater length. I will state a
philosophy regarding testing and counseling programs and that is
that we believe in my department that programs that will

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Maximize the extent of testing of persons at risk, especially
those at risk behaviorally, who have not yet made complete
changes to reduce or eliminate their risk, has the highest
public health priority.

The issue is how do you maximize that and it is our
firm belief that you do not maximize it by mandating it, that the
voluntary component is a critical issue to meeting that goal. We
also believe, although I endorse Dr. Vernon’s statements, we do
not currently have a policy of notification by identifiers of
simply seropositive individuals in the State of Washington,
believing that at least in our environment -- and I endorse Dr.
Vernon’s comment regarding the inappropriateness of automatically
transferring of policies from one state or jurisdiction to
another -- we believe in our jurisdiction it would have the
effect of reducing the level of cooperation and frequency of
testing and counseling, at least in our environment.

The benefits of testing and counseling are dependent on
the individual having his or her own results at hand and are not
primarily dependent on the authorities tabulating the results of
those who are infected and positive. Nevertheless, a certain
amount of identifying information is, of course, necessary when
you look at the issues of partner notification and I would like
to spend some time on that particular issue.

We would submit that there are really two major reasons
for partner notification. We prefer that term, by the way, to
"contact tracing," which to some has pejorative elements, but the
terms are, in my opinion, essentially synonymous at a technical
level.

From a public health standpoint, the main purpose and
the one that most of us tend to focus on is as a means of
controlling disease, by educating people who otherwise would not
be educated and inducing them to alter their behavior so as to
reduce the total number of new infections that are transmitted.

But there is another reason that goes a little bit
beyond that and that gets into the right of a potentially
infected person to be aware of the fact that they are at risk
even if that person is not himself or herself particularly likely
to be a transmitter of disease further. For example, the spouse
of an infected person even if she is beyond her childbearing
years and not likely to have other sexual partners is not a risk
to others beyond herself but, nevertheless, has a right to know
there is a risk as it may affect her health care seeking
behavior.

There are those who would look at a pure cost
effectiveness issue and say that partner notification must prove
itself cost effective in terms of reducing ultimate incidence of

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disease and that is a very important goal but it is not the sole
one because there is this humanitarian issue regarding the
exposed individual that may not necessarily be reflected in those
kinds of statistics.
Really, informing the partners is in many ways not, in
my view, the central issue. There is general agreement, I think,
that the persons exposed to risk of HIV infection should be
informed of that fact and encouraged to seek counseling and to
consider being tested, especially if they are a potential source
to spread the virus to others. The/relevant issues are not so
much whether the partner should be notified, but who should do
it; how coercive should the process; be; what is the potential
disease control yield and at what cost and how shall
confidentiality be maintained to maximize the process?

In considering these issues, I endorse what others have
said, especially Tom Vernon, that all partner notification is
inherently voluntary. If the identity of an exposed partner is
unknown or even the existence of an exposed partner is unknown,
there rarely are practical means to forcibly obtain this
information and attempts at coercion will generally backfire and
that has always been the case for partner notification for

gonorrhea, syphilis and other diseases.

The ideal method for notification is always for the
infected person to be the one to do the notification and this
is, in fact, what happens in the majority of cases. When we
initiate partner notification procedures, that is our first line
and it is what is accepted by the jlarge majority of our
patients, be it for gonorrhea or syphilis or HIV. The infected
person generally chooses to do that themselves and if they do
that, of course, that obviously maximizes the confidentiality
issues.

(

If, in fact, the person| wants our assistance or wants
us to do it for them, we will certainly meet that need and we
will do that regardless of the risk group that the individual
comes from. Whether that individual is a gay man or an IV drug
user or whatever, if that person agrees that his or her partner
should be notified and wants our assistance, it will be given.
We think that person is in a better position than we can be to
determine what is going to work hest for his or her partners, who
may have been exposed. |

When a person voluntarily participates in behaviors
that he or she knows to be risky} that individual shares in the
responsibility for the consequences. In other words, the
responsibility of health authorities to forcibly or to
semi-coercively push this process is lessened if it is clear
that the exposed person knowingly and voluntarily participated
in risky behaviors. This balance, of course, is influenced by

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|
|

|

, v

 

 
 

 

the potential for secondary spread, especially to innocent
parties and especially when there is a risk of transmission to a
newborn, of course, the ultimate innocent victin.

Our department’s policy has been based on the foregoing
principles and a copy of that policy, which includes an outline
of the specific procedures, is appended to three of the copies,
the ones that are bound in plastic, of the written longer version
of my testimony, if you would care to review it. And actually it
is with thanks to Kristine Gebbie and the Oregon State Health
Department that gave us a rough outline of what was going on in
her jurisdiction, that we then used as a framework for building
our policy.

In the interest of time, I will not review that in
detail except suffice to say that the extent to which we imply.
coercion or basically tell someone that in our opinion they must
notify their partners and if we know who the partner is, (we will
do it if they do not say so), relates largely to the extent to
which we believe that exposed individual is unlikely to be aware
that such a risk existed.

So, for example, we would assume that in the IV arug|
abuse setting, in the heterosexual setting, that the majority of
people out there have not yet been impacted by the educational
messages that have been so prominent, for example, among the gay
communities, at least in urban areas. We don’t make a
distinction on whether someone is gay or straight, simply on how
likely it is that the partner is going to know there was a risk
and what is the impact likely to be.

You are all aware of the fact that a very large number
of exposed individuals had their peak exposures years ago with
large numbers of unidentifiable or unlocatable partners and,
obviously, intensive efforts in that milieu are not going to be
especially cost effective.

Two notes about procedure and then I will close. We
never divulge the name of the infected person to the exposed
partner. This principle has been applied throughout the history
of partner notification for gonorrhea, syphilis and other STDs.
If person A names person B as a contact, B is told only that
someone with HIV infection or another STD as it applies has named
him or her as a contact. If person B has several sexual or
needle-sharing contacts, the identity of person A is protected.

Obviously, if B has only one partner, he or she will
know A’s identity, but the principle is upheld that we do not
divulge identifying information.

Secondly, permanent records of identifying information
are not necessary and are not kept. After all exposed partners

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\

 

 
 

 

have been informed and counseled -- and Dr. Davis described a
similar situation in his jurisdiction -- all identifying
information is purged from the records and they are also purged
once it becomes clear that the named partner cannot be located
and we always do that as a matter of policy within six months.

Thank you, again, for the opportunity to meet with you.
I am available for any questions you may have.

CHAIRMAN WATKINS: Thank you, Dr. Handsfield. We will
commence the questioning with the Commissioners on my right. Dr.
SerVaas.

DR. SERVAAS: Could we come back to me?
CHAIRMAN WATKINS: Sure. Dr. Crenshaw.

DR. CRENSHAW: I just want to thank you for your
comments and, correct me if I am wrong, but I understand that all
of you basically said that contact notification is by definition
voluntary, that it isn’t a coercive event, and so you need to
have rapport with individuals in order to bring that about.

If I understood what you were saying, it is even more!
anonymous sometimes if the public health department intervenes
in the event that the person doesn’t want the partner to know
that it happened to be them who was infected. Is that correct?

|
DR. HANDSFIELD: Yes.

DR. CRENSHAW: So, you can serve a function of even
preserving more anonymity under certain circumstances?

DR. HANDSFIELD: Yes. If I may comment, you can
certainly preserve anonymity. The other issue and the reason why
even with anonymity, I think it may in some circumstances be a
mistake to do it against the wishes of the individual concerns
the issue of whether the exposed partner has the right to not
know that they were exposed, especially -- or-potentially
infected -- especially if they, from here on out, are likely to
not be participating in behaviors that will transmit further.But,
I agree, that on balance in the majority of cases it is better if
that person knows.

DR. CRENSHAW: I might just anecdotally share that a
few days I was giving a talk to the American Psychological
Association on duty to warn on a panel and asked a rather large
audience of therapists how many of them would like to know or
like to be told if they were in a sexual relationship with
someone who was infected and they all raised their hands. But
then ensued a debate on how many would warn.

117

 

 
 

 

MR. MYERS Dr. Crenshaw, I think there might be even a
practical comment that I may make about this, too. Even though
~~ and I agree with Dr. Handsfield and others that probably the
best thing to do is to have the index case, (the patient) contact
his or her sexual partners -- it is probably good from the
standpoint, too, of resources. If, in fact local health
departments had to take on the burden of doing 100 percent of the
partner notification, we simply would not be able to do it at
this time without significant increases in resources. At the
present time, it may be preferable for the patient to make that
contact because of limited resources in local health
departments.

DR. CRENSHAW: Another short point. If the patient
Says that they will tell their contact, do you have a follow-up
so that you know that, indeed, the circle was completed? What is
the system?

DR. HANDSFIELD: We certainly do. We strongly
encourage the partner notification. Once we know who the partner
is, and in some cases we may know because it was a spouse, for
example, our -- again, in a non-coercive tone -- our discussion
focuses on developing an informal contract that will set up a
time frame. At the end of that time frame, we will directly
contact the partner and bring that person in.

The infected individual has up until that time to do
the notification themselves. That also gives an opportunity if
the relationship between the two is such that this is an
acceptable way to do it, for the two of them to come in together
and for us to then provide additional counseling regarding the
issues of safe behavior from here on out. We find the system
works well.

Again, there are specific individuals where we have to modify
that and where we end up doing the notification ourselves.

MR. MYERS Dr. Crenshaw, I wish to offer a comment on
the question of follow-up because in Ohio we are just beginning
the partner notification program. We have performed confidential
partner notification with other sexually transmitted diseases for
years but we are beginning a process with HIV patients that I
consider to be much weaker than what has been talked about today.

We are essentially going to implement an anonymous
partner notification process and from a public health standpoint,
in my judgment, it will not be as effective as the process that
has been discussed today. The Ohio Department of Health, as a
condition of funding, will require that local counseling and
testing sites begin anonymous partner notification programs later
this spring. Because there will be no written link between the
index case and the partner, we will really not know if a partner
comes in to our center, for example, unless we see an increase in

118

 

 
 

 

4

the aggregate data. We will ask an individual who comes in to
the CTS on the initial contact form, why they came to the
counseling and testing site.

If they tell us that they were I. was a partner of
someone who told them to come in, then we will have that data,
but our process clearly won’t be as effective, in my judgment, as
the other processes that have been discussed today.

CHAIRMAN WATKINS: Mr. Creedon.

MR. CREEDON: I have a question for Dr. Vernon. I
believe you indicated that you did not think that the process
that you were following would be appropriate in New York or New
Jersey.

DR. VERNON: I am cautious to say that I, first,
believe very much in the process in our environment and, to the
extent that I understand disease control environments in other
states and other cities, believe that it should be used much more
widely than it is.

On the other hand, I do not know Newark, New Jersey,
which has some 60 to 70 percent of currently reported AIDS cases
in an IV drug using community, while the comparable number in
Colorado is 4 1/2 percent. So, indeed, it is a very different
milieu and I simply want to express that I can’t say with
conviction that reportability of HIV serologies is appropriate
for Manhattan or Newark, New Jersey.

MR. CREEDON: While you can’t say, you don’t know of
any reason why it couldn’t happen. I guess what I am really
trying to get at is to me, at least, the idea of reporting IV
infections and trying to maintain some surveillance of those
cases makes sense from a public health standpoint and I just
wonder whether you think, from the standpoint of the Commission,
recognizing that there will be differences in different states
and localities, that we should encourage reporting and
maintaining the type of system, subject to whatever variances are
appropriate, that you are pursuing.

DR. VERNON: Unequivocally yes. In fact, the
Association of State and Territorial Health Officers addressed
the issue of reporting and the long range appropriateness of this
in AIDS control. But I would harken back to the comments that
Dr. Handsfield made, where he who knows the community there
certainly better than I, with all that knowledge, has drawn the
conclusion that the institution of reportability at this time
would detract from the use of the test by at least the gay
community there. We were afraid of that, too, and it has not
turned out to be the case, at least not in large numbers and I
would like to believe that were Seattle to try our model, they

119

 

 
 

 

would find the same results, But I cannot replace his judgment
with my own.

MR. CREEDON: Well, I commend you for being courageous
because I think some steps such as what you have taken are
necessary to find out whether some of the fears that people have
are real fears or whether we can break through them and --

DR. VERNON: It is important to know that historically
in syphilis work and others sexually transmitted diseases we have
never required proof of identity of those individuals who come to
our clinics to be tested or to receive treatment. We do not
require proof of identity in our HIV testing sites either and we
know that a number -- we don’t know exactly what proportion of
those individuals, especially those who are from the gay
community, do use pseudonyms when they come. The advantage we
see is that in the pre-test counseling, in the discussions that
occur, an individual who will, nevertheless, use a pseudonym will
often provide the correct home address and/or phone number and
our experience has been that we have been able to locate the
majority of such individuals when we have done field follow-up.

MR. CREEDON: Now, the process that you describe as
shown in the final page of your report suggests that when someone
does identify a partner or contact or whatever, you follow up, I
take it, and eventually you wound up identifying 45 of those who
were positive. Is that correct?

DR. VERNON: Yes. Indeed, Dr. Handsfield again
discussed the unwritten contract that is drawn up between a field
investigator and the individual in terms of -- if you are
returning to the issue of whether the individual informs his own
partner but --

MR. CREEDON: Well, either you inform or they inform, I
take it?

DR. VERNON: Yes, and to emphasize -- and I believe
this is the take-off from your point -- that all of those
individuals, who are located in the field receive the counseling.
Whether or not they have previously been tested positive, they
are recounseled. If they have not been tested positive but
refuse to be tested, they are counseled and received that
educational message, which we have all emphasized is so critical.

MR. CREEDON: You recommend voluntary testing --

DR. VERNON: Very much so. And, as you can see, from
the 296 people who were tested for the first time, 15 percent is
a distressingly high positivity rate.

MR. CREEDON: It certainly is. Thank you very much.

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. CHAIRMAN WATKINS: Ms. Gebbie.
MRS. GEBBIE: A couple of questions.

One is just a request for some data from Dr. Vernon.
In the figures you used comparing California and Colorado
experiences, a number of states experienced large increases in
testing in about those same months that you illustrate. That was
triggered by things, such as publicity about blood banks, and
drew in large numbers of people to be tested from low risk,
relatively -- often from uninfected groups -- and that might mask
drops or shifts in numbers of persons seeking testing from
highest risk groups, particularly the gay community. Can you
provide some detail on that?

DR. VERNON: An important question. I would draw your
attention to the testing data on that bar graph for 1987. You
all know of the "Heterosexual scare" which occurred in most of
our news media in January and February of 1987. And, indeed,
the numbers you see there, at least in Colorado, and we believe
in California, as well, were due to the very large numbers of
very low risk heterosexuals, who came in for testing at that
time. And, indeed, our positivity rates dropped at that time.
The question comes to whether or not there has been a decline in
the number of gay men who are coming in for testing.

Throughout this period of time, charting on a monthly basis, the
number of gay men has remained quite stable, even through those
periods when the controversies in the State Board of Health and
in the State Legislature over the legislation were most prominent
in the local media. So, while we have not had a rising rate of
testing among men who were willing to state their sexual
preference at the clinic, it has not dropped.

MRS. GEBBIE: Thank you.

DR. DAVIS: I can provide some additional information
as well. In Wisconsin we have a dual system. We have anonymous
testing and confidential testing and from December

1985 through November 1987, there were almost 12,000 people
tested confidentially with identifiers and a little over 10,000
people tested anonymously without identifiers. So, the majority
of people that are tested in our state, given a dual system,
still are tested with identifiers.

In 1986, the seropositivity among those tested with
identifiers overall -- and I don’t have it broken down by risk
group -- was 4.7 percent and in 1987, it was 2.3 percent. So,
we had data similar to what Dr. Vernon just described, a similar
drop there.

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Similarly, with our HIV counseling and testing sites,
in 1986, our overall seroprevalence was 6.7 percent and in 1987,
it was 3.6 percent. We tested over 6,500 people at counseling
and testing sites in 1987 and only a little over 2,300 people, in
‘86.

By risk category, our overall seroprevalence among
homosexual/bisexual men coming to our counseling and testing
sites in 1987 is 8.4 percent and looking at the last three
months of 1987 it was 8.9 percent. We did see a significant
increase in seroprevalence in people that fall into an
undetermined risk category; in the last three months of 1987 we
tested 146 people in an undetermined risk category 12.3 percent
of those were positive. There might be a little bit of
ambiguity in terms of how people identify with risk groups. The
main thing is that we have a system that accommodates that.

MRS. GEBBIE: If those numbers aren’t attached to
materials we have received it if you would supply those.

DR. DAVIS: Yes. I will be happy to supply that.

MRS. GEBBIE: My other question is one that is directed
at all four of you and it is one that may not be answerable
sitting here today. We have really been talking about four
program elements that can be separated, although they are often
intertwined. One is the issue of reportability for one reason
or another. Another is the issue of contact identification or
follow-up for one reason or another. Another is the issue of
counseling of people, who come into you, either because you went
and found them or because they walked in the door. The fourth is
the issue of testing, the technological thing that gives you some
information about people.

As we hear those four elements put together in
different ways in different places and decisions made about their
investment of resources in doing them, I would be very
interested in your observations about the relative importance of
those four elements. Do you see them as separate and if you can
only pick one or two, which ones would you pick?

But, in addition, your comments on the relative
importance of those elements as contrasted with education,
outreach and education, which is the subject of our next two
days, because I know that in most places decisions about public
health investment are not made with an empty checkbook. They are
usually made against a very finite set of resources. So, either
comments on those right now or some written comments back about
that point. /

/
/
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. ‘DR. HANDSFIELD: Maybe I could start, comment. First,
as you are well aware, the public education versus individual
education, which is really what counseling, testing, and
reporting are all about, are not mutually exclusive and clearly
they are complementary. Neither one alone will do the job. I
agree with Mr. Myers’ comment that the single most effective
approach for changing an individual’s behavior is one-on-one
counseling. Whether that is cost effective in terms of the
personnel that you have to handle it is the issue.

Among those particular issues, I suspect we would all
agree up front, although I don’t want to put words in other’s
mouths, but the counseling, the one-on-one counseling is the
single most important component of those. Now, I think we would
all agree that counseling around a test result is probably a more
effective way of counseling than counseling in a vacuum without a
test result. So, I would rank the testing very high.

I am not sure that the follow-up doesn’t sort of cross
all the lines because the follow-up is a very individualized
thing, depending on the need to get a hold of partners and that
sort of thing. My view, and I think the view of our Department
of Public Health in Seattle, would be that reporting is far and
away the least important of those. The behavior modification
that people are going to go through is not dependent on, as I
said before, tabulating who is positive and who isn’t and it
isn’t even dependent on knowing how many. I think everyone on
the panel would agree that the utility of the data on prevalence
and disease trends, from a required reporting system is probably
going to be only modest. Although we have used that for years
for gonorrhea and syphilis and newly in some jurisdictions for
chlamydia, I think we would all agree that had we had the means
in those days to do a blinded randomized prevalence survey, that
we would have leaned on those data far more than we ever did on
the reporting data, which was the best we could do.

With HIV infection, we probably will have the means and
do have the means to do blinded seroprevalence surveys to get at
a more accurate estimate of the prevalence of infection in
various segments of society and I would submit that that would
give you better data than anything you can generate with a
reporting system. I know that there is some, perhaps,
difference in tone of that philosophy from Colorado, so perhaps
Tom wants to comment.

DR. VERNON: On Hunter’s last point -- I know he came
in after Jim Mason testified earlier today, but you heard Jim
Mason state that the benefit of the data, which are tabulated
solely for determining seroprevalence in populations, is very
limited and Dr. Handsfield has just repeated that. We agree with
that. That is not a prime purpose; though we believe the quality
of our data are distinctly better, we are not that much further

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along toward understanding prevalences in various populations
than the rest of the nation and I think we must admit that.

However, we should not be thinking of reporting of
communicable diseases generally as benefiting us primarily,
certainly not solely from our ability to tabulate those numbers.
It has been very important to the control of the sexually
transmitted diseases, in our opinion, that we have had
laboratory reporting regulations over the years, which give us
access to a population of infected persons for bringing them to
treatment, to whom we would not otherwise have had access. I
think that is a benefit from reportability that is well beyond
the tabulation of numbers.

DR. DAVIS: In terms of breaking down some of these
things, looking at reportability, contact notification,
counseling, testing, and if you were to try to break them out
programmatically, if I was to divide a budget into 20 parts,
looking at some of those elements and what it would take to have
some of those elements workable, perhaps 10 parts would be the
actual counseling and testing services, which would be anonymous
counseling and testing, which would be available to all comers.
Maybe 2 parts would be contact notification, which could be
expanded, based on demonstrating efficacy of the program and a
greater need. Perhaps 5 parts would be additional health
education and risk reduction activities.

One part would be public information to try to generate
the system and 2 parts would go in focusing on minority issues to
try to make sure that some of the resources are adequately
targeted. It could vary from state to state. Ina state like
ours, that would probably be the way ours would break down. So,
you could multiply that by a million or two million or however
much the budget would be.

The other thing that one has to consider is the other
resources that can impinge on this. For example, if state
medical societies have a different activity, a different area of
focus, you need to take that into account so that you could
maximize your HIV dollar. One thing I wanted to mention also
and the point was made earlier by one of the panelists was that
we must not ignore other communicable diseases. This is very
key. If we have a population that is susceptible by virtue of
being immunocompromised, some of the other diseases that we are
going to be working with can only become more complex in that
regard. So, I think it is very critical that we not lose sight
of the need for resources to continually work with other
communicable diseases. The other thing, too, in terms of
working with STDs is that we are dealing with the likelihood of
infection by multiple agents that we need to understand
potentially as co-factors and we also have to work very
aggressively with those other STDs.

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MR. MYERS Ms. Gebbie, I certainly agree with you that
-all of these program elements are intertwined and it is difficult
to isolate one element as the most effective approach to control
this infection; but I am going to try to do that anyway.

At the local level, I think the best thing we can do is
to be very aggressive in our outreach to the at-risk community.
Once we identify those individuals, the next best thing we can do
to provide a very intensive counseling. It is going to be costly
because it is individualized but in my judgment, counseling is
the most effective method we can use at this point in time in the
absence of other control measures.

I would certainly agree with Dr. Handsfield that
individual education -- in effect that is what counseling is --
4s most effective when coupled with testing. Testing is a
catalyst that can be used to bring individuals into us.

Going on from there, I would propose partner
notification, if you will, as the next priority. And, clearly,
as I think the rest of the panelists may agree, I would put
reporting last. This does not mean that it is not important but
I would certainly place our limit, if we have limited resources
in those other categories first.

CHAIRMAN WATKINS: Dr. Lilly.

DR. LILLY: My main question has to do with syphilis.
For areas of the country in which there has been contact
notification with respect to other sexually transmitted
diseases, I am wondering have you not experienced the increase
in syphilis that has been seen in the country as a whole over
the last couple of years? In other words, has that contact
notification policy with respect to syphilis, has that paid off
with respect to controlling the incidence of the disease?

DR. HANDSFIELD: I think you raise a point that
actually goes much beyond syphilis and that is the whole issue of
how effective partner notification is to control any disease.

The extent to which that has had its impact on other sexually
transmitted diseases is not well-documented. There is a lot of
belief and intuition that for syphilis in particular it is a very
important control measure and that is because you have a period
of time after disease acquisition of several weeks before the
person becomes infective for! others, so you have enough time to
begin to impact it.

For gonorrhea that period of time is essentially zero
from the acquisition until someone is infective for others and
the effect of partner notification for controlling gonorrhea has
never been documented in any kind of well-fashioned study.

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As far as syphilis is concernea, I think we all agree
it probably is very effective. We have certainly seen an upsurge
of syphilis and also of gonorrhea in inner city, primarily black
(although the ethnic background is only incidental) populations
in the Seattle area that we believe is linked with drug use and
especially with sex in and around crack houses.

Syphilis is probably being driven by the same forces.
I don’t think the fact that it is rising necessarily means,
however, that partner notification isn’t working to limit what
that rise otherwise would have been because we really can’t know
that.

That is another way of saying that the patient is not
the sole or main issue that is having an effect on the current
upsurge of syphilis, I don’t believe.

DR. VERNON: I agree, Dr. Lilly. While our syphilis
rates for 1987 did not rise in line with the national rates, I
could not prove that our decrease has to do with the program we
have in the field. Partner notification for syphilis exists to
my knowledge to this day in all 50 states. Ironically, we can.
call other states in the Union, 49 of them, with identifiers for
an individual who is exposed to a syphilis index case in Colorado
and have an expected response; that is, an attempt to locate that
individual in that state. If that individual were infected
instead with the HIV, such a response would occur in the minority
of those states.

CHAIRMAN WATKINS: Ms. Pullen.

MS. PULLEN: I would like to express appreciation to
all of you for your efforts, not only in informing us in detail,
but also your efforts to do something about this epidemic.

Dr. Davis, you indicated that in Wisconsin, I believe,
you have a coexistence of anonymous testing and confidential
testing. Where is the confidential testing done? Is it done by
the Department of Public Health?

DR. DAVIS: The confidential testing with identifiers
is primarily done by physicians. Most all of the testing in the
state is conducted are at the State Lab of Hygiene, which is our
centralized laboratory, our public health laboratory.

Physicians have access to the public health laboratory and
requisition their testing with identifiers. The only fully
anonymous testing that is done in the state is done through the
counseling and testing sites and we have 45 counseling and
testing sites throughout our state.

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MS. PULLEN: How does the contact notification or
partner notification go forward procedurally in the confidential
testing in your state? Is a contact location team triggered by
the report from the State Lab going to the contact social workers
or is it triggered by the report from the physician going to the
contact workers or how does that begin?

DR. DAVIS: Procedurally, the tests done with
identifiers would be reportable to the State Epidemiologist,
myself, and then we would work through a designated program and
then --

MS. PULLEN: What do you do with anonymous testing
where the person who does come in and get his results is asked to
talk to his contacts and, of course, there isn’t any reporting --

DR. DAVIS: It can be done either way. Regardless of
whether a person is tested confidentially or anonymously,
notification can take place. A person, for example, who would.
want to initiate contact notification by a third party, would
have to demonstrate that they have a validated test. In other
words, we don’t want a person who says that he or she is
positive, but cannot assure us if that fact provide us with a
list of individuals who are going to be notified that they have
been exposed to somebody who is HIV positive. So, one of the
things that is important in terms of accessibility to our
system, whether persons are tested with identifiers or
anonymously, is that there be some means of validating that
these people are, indeed, infected. Beyond that, they would be
able to provide names of individuals for the purposes of
notification.

MS. PULLEN: When the person is tested anonymously and
comes in for his results, is it at that point that he is asked
are you willing to contact your own contacts or do you want us
to do it for you and then they give the list of names if they
wish you to do it or does someone hand them your business card
and say if you want Dr. Davis to do this for you, send him the
list or how does that work?

DR. DAVIS: Our program immediately has to start very
small. Our goal is ultimately to develop a system where a small
group of individuals that are thoroughly trained and supervised a
lead worker will ultimately train more people so more people are
qualified to do this. Not just anybody can do contact
notification. It has to be done in a very sensitive way with
fully trained individuals that know how to handle information
confidentially and are very careful to provide a fully objective
piece of information when conveying a piece of bad news, in

essence.

127

 

 
 

 

So, ultimately, there could be perhaps more direct
involvement with individual programs that are not centralized,
but right now, by virtue of the small nature of the progran,
things have to be centralized. Then I anticipate with proven
efficacy of the program, which would have to be proven down the
line because we really don’t have a clear idea yet of how
effective these programs are going to be, local facilitation can
take place.

MS. PULLEN: So, the partner names come to your office
whether or not -- in a confidential manner, whether or not --

DR. DAVIS: No. The only person that would actually
have the partner name would be the individual who is working with
that person. In other words, centrally, we don’t need to have
the name of the partner; only the case worker who is dealing with
the individual who is infected would need to have the names of
that person’s contacts and once all the investigations are
completed, that list is destroyed. There is no need to retain
those names.

MS. PULLEN: That is what I thought but I thought I
heard you say that it needs to be centralized a minute ago.

DR. DAVIS: We have a need for a centralized program by
virtue of the fact that it is very small and there is room for
growth, but only through evaluation of the program to
demonstrate what the further needs are, the further needs.
Clearly, more and more local public health agencies are going to
want to become involved, but the individuals employed at local
public health agencies who will do the contact notification would
have to be trained before they would be allowed to do that. But
in terms of individuals who are infected, the only person
provided with the contact’s names is the one worker who is
working closely with that person.

MS. PULLEN: Do you have any kind of data on how many
people come to testing sites or get tested, who say I was told
by my partner that I should -- .

DR. DAVIS: No. I don’t have that right now and that
is a question that we are working into our counseling and testing
site anonymous questionnaire. We will have that data and I am
sure by the end of the year we should have a fair amount of data.

DR. HANDSFIELD: It is not infrequent and it is
increasing, at least in our jurisdiction, where more and more
people are coming in and stating that reason, but we also don’t
have specific data. I think it is a common phenomenon.

MS. PULLEN: If any of you have that data, I would
appreciate receiving that.

128

 

 
 

 

CHAIRMAN WATKINS: Dr. SerVaas has a follow-up question
here.

DR. SERVAAS: I am addressing my question to Dr.
Vernon. I congratulate you on your courageous and excellent
program and your excellent presentation. It would appear that
you lead the nation in proving that to date you haven’t caused
any discrimination or driven high risk persons underground with
your program.

My question is, I believe your state had the first
post-1985 blood bank screening AIDS case from a high risk person
donating in the window period. Even though your blood supply is
probably safer than that in California or New York, have you
thought of reaching out to aggressively test all your prior to
1985 blood transfusion recipients? Isn’t this an overlooked risk
group, given that these people don’t require expensive counseling
to change their life style and possibly it would be cost
effective to go and take care of this group, who really don’t
need to change a life style.

So many cases have come to our attention where a blood
recipient has gone from pillar to post to try to find out why
they are not getting well or why they are sick and it seems that
we should be trying to help find and identify -- I think they
estimate 12,000 in the country -- who are probably infected with
HIV from blood transfusions. We really don’t know how accurate
that 12,000 is probably. Could you tell me what Colorado might
have up your sleeve to do something there?

DR. VERNON: Well, thank you for your comments. I
really cannot add to your data base on the blood transfusion
population prior to 1985. We have generally followed the
guidelines of the Centers for Disease Control. I think we have
essentially done what virtually all other states have done in
that respect.

We have worked very closely with the blood bank
community in Colorado relative to that follow-up, but I don’t
believe I can point to anything that is above and beyond what I
am sure Jeff or Ms. Gebbie and others have done in their
jurisdictions.

DR. SERVAAS: Does it occur to any of the members of
the panel that these 12,000 people, maybe that it wouldn’t cost
so much to identify the 12,000 people who are believed to be
infected from blood transfusions? Even though it is not where
all the action is, that is a lot of people who don’t know they
are HIV positive and they are probably exposing their spouses.

129

 

 

 
 

 

‘
‘

DR. HANDSFIELD: Perhaps someone in the audience may
have better data. It was my impression that the estimate from’
CDC was that 12,000 may have become infected, and I believe it is
a majority of those people will already have succumbed. You have
to look at why people have blood transfusions and if you take
people who have blood transfusions, a large proportion are dead
within a year because of whatever the underlying problem was that
led to the blood transfusion to begin with, be it an accident or
cancer chemotherapy or whatever.

So, I believe that the 12,000 was the number that were
infected but not the number currently existing. Whatever number
is currently existing will have been reduced substantially, it
seems to me, by a large proportion of those, who will have
already sought testing spontaneously because of media attention
and the like.

Then on top of that, the people who received only one
or two units of blood statistically are going to have an
extremely low risk of infection and you can ask what would be the
bang for your buck in terms of finding them, given their low rate
of infection.

My belief is, but I defer to anyone who has better
data, that the number of people who are likely to benefit and the
disease control impact -- an all-out effort to find them all and
test them might not be very great. They will be diffused
throughout the country and so on. Jeff, do you have any comments
on that?

DR. DAVIS: I feel that is a very accurate assessment
at this point in time.

MR. MYERS Dr. SerVaas, I think there is one thing we
can and have done at the local level -- I believe that is to
support when the recommendations from CDC that recommends a
conferencing, if you will, between physicians and their patients
regarding blood transfusion and the potential transmission risk
to that patient. We have encouraged and educated our local
medical community to follow those guidelines and I think that is
something we should all do at the local level. I am not |
convinced that these individuals ought to enter into our
discussion of the public health magnitude of this epidemic.

CHAIRMAN WATKINS: Dr. Lee.

DR. LEE: I want to’make sure I have got these numbers
right, so correct me if I am wrong.

Dr. Davis, you said 530 bucks it costs you for one --
DR. DAVIS: That wasn’t ours. I can go through this --

130

 

 

 
 

 

DR. LEE: . Don’t go through the whole thing. How much
does it cost you for a positive finding? |

DR. DAVIS: I couldn’t tell you that in our state. The
data that I was able to -- the most comprehensive experience is
in Colorado and I can go through the -- Tom could also, clearly,
because it is in his state, but this was done very well --

DR. LEE: What was that $530.00?

DR. DAVIS: I will explain. I had data from one of Dr.
Vernon’s associates on the first 265 individuals, who were HIV
positive. At that time, there were 465 partners identified; 376
of those 465 were actually notified. Of those notified, 11
percent had previously tested positive; 19 percent declined
testing, but were counseled and 70 percent or 264 agreed to be
tested. Of those newly tested, 16 percent at that time or 42
were seropositive. Utilizing the data on non-start-up personnel
costs plus costs of collecting blood specimens in the field, the
costs of detecting each previously undetected HIV infection was
approximately $530.00. If you look at the non-start-up costs in
that program, plus costs of collecting blood specimens in the
field --

DR. LEE: Okay, but I thought -- I am getting to Dr.
Vernon, but I thought that 530 was your figure.

DR. DAVIS: No, no. I am sorry.

DR. LEE: Okay. Then my second is question answered.
That is your figure for the cost of --

DR. VERNON: It is a figure Jeff obtained from calling
his colleague, Dr. Richard Hoffman, who is our State
Epidemiologist in Colorado.

I asked our staff, oh, perhaps two months ago to give
me some estimates. They have given those to me. I have looked
at them and felt that perhaps the estimations of investment and
of benefits were not conservative enough and, meanwhile, had not
reported my opinions back to my own staff. So, Jeff got the old
figures.

One has to be very careful in such a situation. How
many of those people found to be infected would have gone on to
infect others? If so, how many others? So, one has to make an
assumption then that an infected person if not detected and
counseled about his behavior would have infected one other
person in the next ten years, use that as a conservative
assumption. For that one other person, what would be the
likelihood of his going on to full scale AIDS with the costs of

131

 

 
 

 

a full scale case of AIDS? One uses perhaps 20 percent or 25
percent, but even placing very conservative assumptions upon the
data from our staff, I find that the cost of investment to the
cost of benefit in our program would be $1.00 to $6.00. Thus, a
6 to 1 savings from a partner notification program with quite
conservative inputs.

DR. LEE: At least 6 to 1. Now, there is another
figure that I haven’t been able to get at. Maybe with your
intensive little screen there, you have some idea. How many of
the prior unknown positive contacts were positive because of a
bisexual male?

Y a“

f/m VERNON: Unfortunately, I don’t have those data at
the tips of my fingers. Early in our program, there was a fair
contingent among our small IV drug using community, but
unfortunately I can’t give you the data. I can tell you that
all risk groups in Colorado are represented in our partner
notification data. I just cannot give you the proportions or
the --

DR. LEE: It is hard to get at a figure of what
the risk women have --

DR. VERNON: Yes.

DR. LEE: -- you know, if they are not having sex
with drug abusers.

DR. VERNON: Yes.

DR. LEE: One other thing. Dr. Mason showed -- this is
the last graph on his book that he handed out and this was the
decrease in syphilis in homosexual males. So, to answer Frank
Lilly’s question, it would seem to me that behavioral change and
education has a tremendous effect on sexually transmitted
disease. On this graph, when it is going up all over the rest of
the country --

DR. VERNON: We are absolutely convinced of that and
the data from Denver show precisely that kind of a plummeting
incidence rate of acute anal gonorrhea, of syphilis among the

homosexual male population, but we do not see the decreases
occurring in groups outside of that population. And I am very
disturbed by the data we heard about Miami this morning where
homosexuality is predominantly in the Hispanic and black
communities, where there has not been that decrease. That is a
very important message for all of us.

DR. DAVIS: I have one question to ask Hunter, one
additional -- I don’t want to get complex into antibiotic

132

 

 
 

 

therapy, but do you think the Spectinomycin -- the use of
Spectinomycin to treat penicillinase-resistant gonorrhea has any
effect since that wouldn’t get at incubating syphilis in some
patients?

DR. HANDSFIELD: In a nutshell, no, I don’t think that
is the major influence. I think that not very many of the
syphilis cases are occurring in people who were incubating at the
time they got -- incubating at the time they were recently
treated for gonorrhea, if they were at all. I don’t think that
is a major influence.

CHAIRMAN WATKINS: Dr. Crenshaw, do you have another
question.

DR. CRENSHAW: The varying testing centers across the
United States generally report two figures: the numbers who come
in to get tested and the numbers who actually get tested. Could
you tell me in your respective states approximately how many come
in and don’t get tested or what percentage?

DR. HANDSFIELD: I can’t tell you for the State of
Washington, but in the Seattle-King County Department of Public
Health, about 92 or 94 percent, a very large majority of the
people attending our AIDS prevention project and who had
originally come in, get tested, as well as counseled. In our
sexually transmitted disease clinic it is even higher but there
are some differences in how persons select themselves for
attending that project.

MR. MYERS Our data from Columbus would confirm that.
We have had contact with over 9,000 individuals at our counseling
and testing sites since 1985. of that number, over 7,800 have
elected to take the test and the post test counseling. We have
found an overall positivity rate of 8 percent. Similar to the
previous comments that percentage has dropped. We were running
about 20 percent positive in 1985 when most of our patients were
in high risk behavior groups; it dropped to about 14 percent in
1986 and about 8 percent in 1987.

So, we are having success in of getting a high
percentage of those who initially come to the clinic to remain,
after the pre-test counseling, for the test, and then to come
back for post-test counseling. In fact, 75+ percent of our
people who take the test then come back for post-test counseling.
I would be curious to find out how this figure compares with
other counseling and testing sites. Also, 95+ percent of the
people who test positive at our site indicate that they are from
one of the identified at risk groups. So, we feel, at least at
this point in time very good about the fact that we appear to be
reaching the at-risk community in Columbus.

133

 

 
 

 

DR. CRENSHAW: Do I understand 1,200 who come in
intending to be tested don’t get tested?

MR. MYERS That is correct.

DR. CRENSHAW: That is really my focus of interest and
aS you answer the question what I am getting at is that I am an
advocate of counseling for obvious reasons. That is the
direction that my bias goes, but it does appear that in some of
the programs, and many of the other programs have far wider
disparity in the numbers than what I am hearing here today, the
pre-test counseling seems somehow to discourage pursuit of the
test. It takes a lot of courage to walk through those doors and
venture forward to get tested. So, I would be interested in any
insights on how to capture that margin a little more
effectively. I think 1,200 is a lot of people.

DR. VERNON: Let me respond. I admire Dr. Handsfield
because he had the exact percentage on the tips of his fingers.
I don’t have the exact figure but I am quite sure it is on that
order. We believe in the test. We believe the test should be
utilized. We believe the test is a trigger, which makes the
all-important counseling more effective than it would otherwise
be. So, we not only encourage the test for those who have come
to the site, but we believe that returning for the counseling,
whether the result is positive or negative, is extremely
important.

Dr. Myers has suggested that 25 percent do not return.
We believe that 10 to 15 percent of our persons tested, of our
positive persons, do not return. But therein lies, we believe,
an important element of our program. We follow those people.
We believe that finding them in the field and providing the
counseling to them, whether or not they choose to learn the
result of the test (and it is their choice) is an important
element of our progran. Yes, we believe in the test and more
than that we believe in the counseling which is associated with
that test.

DR. DAVIS: I will provide our data in writing because
I don’t have the numbers of people counseled but not tested at
counseling and testing sites.

One other thing, though, people may tend to pre-screen
themselves by calling hotlines and asking appropriate questions
regarding whether they should be tested. So, in large part, you
may have a high proportion of people testing at counseling and
testing sites because they come in with the expectation of being
tested possibly because they have already spoken to other people
about it.

134

 

 
 

 

MR. MYERS Dr. Crenshaw, I would also suggest that
there are many reasons why 1,200 may not choose to be tested and
some of the reasons may be very valid. I think the important
thing to understand, though, is the fact that all of those 9,000
people received counseling. If we are talking about changing
behavior, I think we are reaching a portion of the population
that we need to reach with preventive counseling. I think the
other thing to understand is that after the counseling -- I don’t
have the exact figures -- but many of those people should not get
tested because there are no risk factors involved.

So, I don’t think you can just look at that 1,200
number and come to the conclusion that it is either a high or a
low number. Actually, we feel quite comfortable that the vast
majority of folks that we need to reach are being tested and
returning for the post-test counseling.

CHAIRMAN WATKINS: Ms. Gebbie.

MRS. GEBBIE: We heard some discussion earlier today of
this issue called duty to warn, which implies that an individual
practitioner of medicine or some other healing discipline ought
to be the one who carries out an obligation to warn a potentially
infected person if he or she has knowledge of it. I think it was
Dr. Davis’ testimony that indicated that that might not always be
the best idea because maybe there are individual physicians,
practitioners, who don’t have the skills in the sensitive process
of alerting an unsuspecting sexual partner of their infection,
which sort of goes contrary then to that idea of the individual
duty to warn. I would be interested in some more discussion -- I
don’t think they are necessarily contrary, but --

DR. DAVIS: I don’t disagree with the duty to warn. In
fact, I think the position in Oregon is a very good one. There
may be confusion. What we have tried to do, for example, in
Wisconsin is send a clinician’s guide regarding AIDS and HIV to
every physician in the state or virtually every physician. A
large portion of that is focused very specifically on how they
can counsel and provide a service, which would facilitate a very
accurate and objective message with the sensitivity needed to
provide good counseling.

I think the issue regarding duty to warn isn’t fully
clear among all physicians practicing medicine in this country
and one of the real positive aspects of the Commission is to
provide a very clear message regarding what that means to
physicians throughout the country. The AMA position, I think, is
very consistent with the position that you all have in Oregon, if
I am not mistaken.

The main thing is consistency. We are concerned that
if physicians or other health care providers are not consistent

135

 

 
 

 

about how counseling of patients and how contact notification
might take place, that perhaps in that setting that the public
health system should become involved. But I am not saying that
the duty to warn should be fully passed on. If a physician is
competent to do that, by all means, I think it is important that
the individual get information that is very accurate and that
appropriate actions can be taken by the physician to facilitate
good care of that individual, plus facilitate notifying those
people that need to know. Whatever system works best within a
State should be utilized. If there aren’t adequate resources to
have the public health system warn literally everybody that needs
to know, certainly that wouldn’t be the best system. There has
to be a mix, I think, to make the overall system work. I am
sorry if I was a little bit confusing in terms’ of my comment.

DR. HANDSFIELD: We also believe the duty to warn is an
important one and that many physicians are not equipped to do
that. The philosophy we have tried to inculcate among Seattle
area physicians is that they can discharge that duty by calling
the Department of Health. That does not constitute reporting in
the sense that we don’t keep permanent records of that, but if a
physician has a setting in which he believes, and his patient
believes, that a partner should be notified and they together
want the assistance or the physician requests our assistance, we
will take steps to assist in that process.

We are actually considering an approach to the State
Board of Health to formalize that, to get some sort of
codification of the principle that the doctor may either inform
directly or may discharge that responsibility by telling the
local health department and then putting the load on our
shoulders as to how to handle that particular case.

DR. VERNON: At the time I was surprised but when our
legislation was before our general assembly last winter, it was
organized medicine which requested the insertion of the
provision that fulfillment of the reporting requirement
fulfilled the duty to warn by a physician. Now, I am somewhat
ambivalent about that because it sounds like doctors are passing
the buck, but I wholeheartedly agree with the comments that have
been made here, that in this very often difficult and certainly
delicate process of partner notification, physicians do not do it
very well. They don’t have the time, the inclination and, above
ali, the training.

MRS. GEBBIE: It is my impression that not all local
health departments or state health departments are wholly
delighted at having that responsibility pushed back to them in
that process and that it is clearly something that needs to be
debated further.

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DR. DAVIS: I think you raise a good point there, Kris.
I believe within each state there has to be understanding how
duty to warn will work.

MR. MYERS I might comment, too, on that. It is a

curious phenomenon that particularly within the past six months
in Columbus many physicians and HIV positive and AIDS patients
are asking us to do partner notification. This is a very
positive statement about how far we have come in the past 6 to 12
months in gaining the trust of the at-risk population. However,

we still have a way to go.
CHAIRMAN WATKINS: Dr. Lilly.
DR. LILLY: Just a very quick question.

Dr. Vernon, you said a couple of times that you don’t
think that your reportability requirements and so forth have
scared off the gay community. I am just wondering, how do you -
know that?

-DR. VERNON: Well, you know, I have some humility about
that question. We have tried to examine it from all angles. We
have compared our testing rates. We have compared, as I have

showed you, the experience with California, which has quite the
opposite requirements concerning reporting from our own.

DR. LILLY: What do you mean by "compared" testing
rates with California?

DR. VERNON: With the best denominator we have, which
is a weak one, which is the active population, and the best
numerator we have, which is the number of individuals who have
been tested --

DR. LILLY: This is in the population at large, but my
question has to do with gay men.

DR. VERNON: Yes, and, Dr. Lilly, Ms. Gebbie was
getting at that question earlier when she inquired about that
increase -- those increases in testing and to what extent were we
simply looking at a heterosexual population. The best data I
have are those which I presented and that is, during this entire

period the number of gay men beingntested as evidenced by the
questionnaire at the testing site has been stable.

DR. LILLY: And that is a fraction of the total tested.
Is that what you are saying?

DR. VERNON: No, the absolute number. During a time
when the total number of people being tested ascended quite
rapidly early in 1987 and, incidentally, a time when the

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legislation was receiving a lot of publicity in the media, the
number of gay men tested each month was quite stable. Yes,
fluctuations, clearly; 10 to 15 percent up or down each month,
but there has not been a substantial decrease during the most
publicized times.

Again, accept my humility about data bases. We can’t
use as a denominator the number of gay men in our community
anymore than any other community. The data simply are not
available. So, we use the best we can.

CHAIRMAN WATKINS: I will close out the panel asking
just a couple of questions.

Dr. Vernon, you got my attention when you said that you
and the State of Colorado are very conscious of the turn down of
the potential enlistees into the military, those who were turned
down for HIV positive test results, and you provide a counseling
transition for them.

Would you tell me more’about that? I have heard some
rather severe criticism from a variety of witnesses and people
who have written and so forth, ‘that, in fact, it is a very
callous process. The HIV positivity is determined. The person
is given a slip of paper to the nearest place that perhaps can
provide some counseling and is sent on his way, his or her way.

So, I would like to know a little bit more about how
that baton is passed smoothly and sensitively onto the proper
counseling agency and how do you do that in Colorado?

DR. VERNON: I wish Ms. Gebbie were sitting here beside
me because two years ago the two of us and a couple of our
colleagues went to the military entrancing processing
headquarters in Chicago to discuss their process and to inquire
specifically about what follow-up process was going to be
available for these young men, who were escorted home to their
doorstep, having been given some level of counseling; we felt it
was rudimentary. And, indeed, we considered this to be a
Significant problem to be addressed to all of our colleagues in
the 50 states.

We in Colorado then made it very clear not only to the
processing stations, but to our military facilities that we had
the same expectations about reportability, once we had our
reporting regulation in place, that we had always had about
rubella or salmonella or whatever else. There has been no
problem. Because of preexisting military policy, when the local
or state jurisdiction has a requirement for reporting, they will
abide by that requirement. We, therefore, receive those reports
and have followed up on each individual who has been found to be
positive. There are only about 15 enlistees in Colorado to this

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point but, indeed, we found one by the initial testing was
apparently a false positive. So, that was a useful follow-up,

when we did not find a history of risk behavior, to retest such _
an individual.

CHAIRMAN WATKINS: Dr. Handsfield, in your state, do
you have a problem there with those that fail entry because of
being HIV positive, that then seem to flounder and are sent back
to society without possibly a smooth transition in the proper
counseling facilities?

DR. HANDSFIELD: Our rate of seropositivity in the
military recruits is smaller than in most of the nation and the
number of positives that have come to our attention is a very
small number and we have not seen any obvious problems with acute
psychological decompensation or other issues. That is not to say
there isn’t any --

CHAIRMAN WATKINS: Any of the other witnesses have any

MR. MYERS Same experience.

DR. DAVIS: We have 13 of 28,156 military recruits that
were positive and to my knowledge those people were referred to
counseling and testing sites for --

CHAIRMAN WATKINS: So, it has not been an issue with
any of you? Now, these were from the states that are most
heavily impacted and I assume it is just another problem of
available resources to do the job properly and with the proper
follow-up.

I would also like to know and you were touching on it,
I think, a little bit earlier -- of the number of people that
come back after anonymous testing, do you have any way of
determining that? Who comes back to really find out what their
own personal status is and seek the counseling? Do you have a
number? Maybe you gave me a number. I’ wasn’t sure that we were
talking about that particular piece of information.

DR. DAVIS: I don’t have that number here.

CHAIRMAN WATKINS: I can’t believe that being anonymous
woulan’t allow some to want to come back and determine their
status.

DR. DAVIS: I will try to get those numbers from

Wisconsin and provide those for you. I don’t have those with me.
But people that don’t return --

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CHAIRMAN WATKINS: Do you have that information? Is it
provided from the data that you obtain when the person comes in
for follow-up counseling?

DR. HANDSFIELD: I don’t have figures with me but we
have an anonymous testing system that has the patient -- we still
create an identifier that we can determine whether someone has
returned or not. We ask each patient -~- we use such things as
mother’s maiden name, father’s first name, name of the town
someone was born in. By using this, and we ask people to take
the first two or three letters from those various things, you can
build a personal identifier that only the individual can recreate
and that you don’t keep a record of.

My code would have been HUHUWECHI43. That is all based
on names and things that only I could know, but by doing that,
when people return, they give us that same code. Then you have
to remember, because all we have to do is Say what are the first
two letters of your father’s name, what are the first two letters
of the time you were born -- so, they recreate the code and we
can then determine whether someone with that code has, in fact,
returned.

So, our anonymous track does allow us to determine what
our return rates are. I don’t remember off the top of my head
what they are because those are --

CHAIRMAN WATKINS: Is it a significant number?

DR. HANDSFIELD: -- if the proportion returning is no
different in our anonymous track compared with our confidence
non-anonymous track.

CHAIRMAN WATKINS: Is it a significant number?

DR. HANDSFIELD: Among those who are seropositive, in
the range of 80 to 90 percent do return and it is no different
among the confidential versus the anonymous ones. The difference
is that for the anonymous ones who don’t return, we cannot field
visit them as they would be able to do in Colorado, in order to
bring them back in, but the number is small.

DR. DAVIS: We have the same problem, of course, in
Wisconsin.

DR. VERNON: Between 10 and 15 percent of positive,
antibody positive, individuals do not return and they are, of
course, a target of an intervention.

CHAIRMAN WATKINS: I want to thank this panel very
much. You have beén a very informative panel, very helpful to
the Commission. We will keep our dialogue with you open if that

140

 

 
 

 

is all right with each of you and there may be follow-on
questions for you. Thank you very much for coming today.

DR. HANDSFIELD: Mr. Chairman, it may be presumptuous
but may I make a very brief observation?

CHAIRMAN WATKINS: Certainly.

DR. HANDSFIELD: I hope what you have seen today is a
display of rampant pragmatism. Those of us in public health are
criticized commonly for not handling this epidemic in the way we
have handled other epidemics. In one sense that is true, but the
way it is false is that for past epidemics, for gonorrhea,
syphilis or anything else, we have devised our disease control
policies in the context of the social, political, medical
climate. The fact is, for reasons that we may be upset about, we
may decry the fact that this test is special and this disease is
special and affects population groups that are special, but you
can’t deny the reality of it.

I hope that you have had the sense that regardless of
perhaps differing philosophies and so on, that it really comes
down to a track record that is almost unassailable, of public
health officials making their policies on the basis of what they
think is going to work best and if things are different, it is
because we live in a different context and different times and
that we can’t turn back the clock. Thank you.

CHAIRMAN WATKINS: Thank you, all.

The final panel today is a panel on the subject of
sexually transmitted disease and AIDS. We have three panelists:
Dr. Michael Rosenberg, Executive Director, American Social Health
Association; Dr. Willard Cates, Director, Division of Sexually
Transmitted Disease, Centers for Disease Control and Wendy
Wertheimer, Director, Public and Government Affairs, American
Social Health Association. We would like to hear first from Dr.
Michael Rosenberg. .

DR. ROSENBERG: Thank you.

I am the Executive Director of the American Social
Health Association, as well as a practicing physician and a
researcher in the field of reproductive health and sexually
transmitted diseases.

The American Social Health Association is the country’s
only national nonprofit organization dedicated to controlling
sexually transmitted diseases. The organization has existed for
75 years, and the fact that our mission is still unaccomplished
has immediate implications for the current HIV epidemic.

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ASHA’s largest program is the National AIDS HOtline.
Since we began operation of the Hotline over a year ago, we have
provided more than a million Americans with information about
AIDS and appropriate referrals. This year we expect to handle
more than 3 million calls as part of the Hotline.

We also act as technical advisors to Ogilvy and Mather
as part of the National AIDS Information Program. Some of our
other programs include the National Sexually Transmitted
Diseases Hotline, Herpes Resource Center and a variety of school
and work place-based educational programs.

I am here today to discuss the relationship between
AIDS and other STDs and I will begin by telling my conclusion.
It is that certain STDs, notably those which break the skin, are
emerging as the strongest risk factors for acquiring HIV
infection. The direct implication of this is that better control
of STDs may be on one of the most immediate and practical control
measures for the HIV epidemic.

From the beginning, certain differences emerged in a
pattern of HIV infection in Africa and the United States. In
Africa, AIDS has been and continues to be a heterosexual
disease; in the U.S., it is not. An explanation for this
difference may be in the high prevalence of STDs in Africa. For
example, the rate of syphilis in the U.S. is presently 31 cases
per 100,000 people, while in Africa, the rate is between 100 and
300 hundred times higher. Early studies from africa have also
been consistent in finding a markedly increased risk of HIV
infection among persons with ulcerative STDs. The risk
calculated in.early studies from Africa are substantial with STDs
increasing risk by three-fold or more. Studies conducted in the
United States also consistently support a causal relationship
between HIV infection and syphilis, gonorrhea and ulcerative
STDs.

Two recent studies, both published within the last two
months, are worthy of particular note, because each represents
the strongest evidence to date of the relationship. The first
investigated mainiy heterosexual patients at a large urban STD
Clinic in Baltimore. Each STD investigated, syphilis,
gonorrhea, hepatitis, genital herpes and genital warts,
increased the risk of acquiring HIV infection. Among men the
most important risk factor was past infection with syphilis,
which doubled the risk of HIV infection. In women, genital
warts were the most important risk factor and also doubled the
risk of HIV infection.

The second study looked at genital herpes among gay men
in San Francisco. This study is the clearest evidence we have
that preceding infection with genital herpes increases the risk
of HIV infection; in this case by one and a half times.

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| In summary then, the literature is remarkably
consistent, demonstrating that STDs which cause skin ulceration
markedly enhance the risk of becoming infected with HIV. The
ulcerative STDs of concern are syphilis, genital herpes,
chancroid and genital warts. These four diseases will afflict
about 40 million Americans this year and herpes and warts, which
are caused by viruses, are incurable. Underscoring the
importance of these numbers is the fact that each is becoming
more common in this country. :

All this means basically one thing and that is that
individuals with ulcerative STDs are at heightened risk for HIV
infection. Therefore, better control of STDs means fewer cases
of HIV infection. This fact also has crtcial implications for
the heterosexuals in the United States.

Studies show that this segment of the population
considers itself safe from the AIDs epidemic and has not changed
its behavior. The presence of an ulcerative STD in any
individual enhances the risk of HIV infection and should be seen
as a warning signal that the threat of HIV is quite real.

My recommendation, then, is fairly simple, and that is
to better control STDs. Historically, increased spending on STD
control has had a measurable impact on prevalence. Given the
problem today, a thorough control effort must involve spending
several times the 65 million dollars we currently spend each
year.

There are two control components which I think are
worthy of emphasis. First, we need to integrate discussion of
other STDs into prevention messages, which are being developed as
part of the AIDS prevention program; indeed, to separate the two
is illogical.

Secondly, there is an urgent need for further research
on the relationship of STDs and AIDs and to better provide the
tools to help control STDs. Better contréls of STDs could prove
to be the most effective means of decreasing HIV infection in the
next few years and may well prove to be one of the most cost
effective measures that this panel could recommend. I thank you
for the opportunity of expressing those views and would be happy
to answer your questions.

CHAIRMAN WATKINS: Thank you very much, Dr. Rosenberg.
Dr. Cates.

DR. CATES: Thank you, Mr. Chairman, Commissioners.
Turning to syphilis as the most easily trackable general ulcer
condition in this country basically good news with regard to
males, a decrease in this country during the 1980s. However, in

143

 

 
 

 

1987, in both genders, we saw an increase. Looking at the
percent change by three key groups; heterosexual males, females
and homosexual males and then by three racial and ethnic groups.

For both heterosexual males and females, the percent
change was positive among all of the racial and ethnic groups.
Among white homosexual males, there was continued decrease in
syphilis, just like that last graph that Dr. Mason showed you in
your handout today. In absolute numbers, of syphilis cases the
syphilis increase in this country is occurring in inner city
minority heterosexual populations.

What are the implications? Because the increase is
occurring in the heterosexual population it indicates that they
have not yet assimilated the types of prevention messages that
we have seen occur in the white, gay male community. Just as
importantly from the etiology studies that Dr. Rosenberg has
talked to you about, these are possible determinants of both
either transmission or acquisition of HIV. That is the scary
part.

We have also talked about another genital ulcer,
chancroid; smaller in terms of the numbers. There are about
35,000 cases of primary and secondary syphilis in ’87 and this is
now about 3,500 of chancroid in 1987, about 1/10th that number.
In the developed countries, genital herpes is 15 fold higher in
terms of symptomatic coming to private physicians’ offices. The
trend in resources directed to STD over the 20 years, 1966
through 1986 is shown next.

In 1966, all of our STD dollars were directed toward
syphilis. By 1972, we had syphilis, gonorrhea and, "the other
STDs." Through the next ten years, we had syphilis, gonorrhea,
PID, chlamydia, herpes and the "other STDs," but by 1988, we
have HIV and the “other STDs." The other STDs, in fact, offer
us a unique opportunity to try and control the spread of HIV in
exactly the same populations that unfortunately, because of
their drug using patterns, have also high seroprevalence of HIV.

What can we do about it? You often hear the line,
that education is our only tool. Education is not our only
tool. This particular Commission, in my view, was heroic in
terms of addressing a key issue; namely, the provision of
treatment facilities for drug users -- a way of controlling the
spread of HIV. Controlling the spread of genital ulcer disease
is another tool beyond education available to you. Eliminating
the ulcers can avoid spread in the powder keg situation of the
inner city, minority, heterosexual population with high HIV
prevalence, increasing genital ulcer prevalence and,
unfortunately, decreasing resources that have been directed to
the traditional STDs.

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CHAIRMAN WATKINS: Thank you very much, Dr. Cates. Ms.
Wertheimer.

MS. WERTHEIMER: I would like to commend the Commission
for recognizing what very few others have, the importance of
sexually transmitted diseases in the epidemic of AIDS.

The other STDs, which have never taken their
appropriate place among the nation’s health priorities, have been
overshadowed by AIDS. We now know, as you have heard, that these
diseases are more dangerous than ever as an important risk factor
in AIDS. Yet, we continue to address AIDS to the exclusion of,
and more importantly, at the expense of research and control of
the other STDs.

The STD program at the CDC, as Dr. Cates has told you,
has been forced for many years to make difficult tradeoffs and
has been stretched well beyond its means. STD programs have been
confronted with outbreaks. of antibiotic resistant strains of
gonorrhea, the need to prevent pelvic inflammatory disease, the
rise in viral diseases, such as herpes and human papilloma
virus, the recognition of chlamydia and the importance of these
diseases in fertility and reproduction. It has been like trying
to contain a four alarm fire with a few buckets of water. First
slide, please.

Funding for STD programs at the CDC and for research at
NIH have had no growth since 1982. That little purple worm that
goes along the bottom of the slide is STD funding. You can take
that line back well before 1982 and you would see virtually no
fluctuation. In fact, 1943 was the year of the greatest federal
support for STD control. Adjusting for inflation, we would now
have to spend $250 million to equal the federal effort in 1943,
when the program consisted only of syphilis control.

Today, the entire federal program to control STDs
receives only one-quarter that amount, $65 million, and that is
to control all sexually transmitted diseases.

Since 1981, the STD control program of CDC has been
subjected to two proposed block grants, reprogramming of funds,
cuts in funds, the Gramm-Rudman-Hollings sequestration, a hiring
freeze and the direct diversion of funds and personnel to AIDS
activities. The President’s budget for fiscal year 1988
requested a $4 million cut in funds for the program and the
budget just presented to Congress for fiscal year 1989 would
freeze the level of funding available to STDs.

At the beginning of the AIDS epidemic, resources and
manpower were mobilized to meet the need of this important
epidemic. This was appropriate; however, in the years that have
passed, if you will show the next slide, these resources have not

145

(?

 
 

 

been restored. In fact, quite the opposite has happened. The
STD control program has continued to make sacrifices to AIDS.
Millions of dollars have been diverted from STD programs to AIDS
activities. With no new dollars and a continual drain of
existing funds, the STD program has suffered severely. The
diversion of trained, experienced STD personnel, both
headquarters staff and federal assignees, won’t appear on that
chart. The brain drain has been severe and constant.

In 1981, four STD division members were assigned to
investigate AIDS. In 1982, eight members of the division were
detailed. In 1983, five headquarters staff and ten field staff
left STDs to work on AIDS. In 1984, three headquarters staff
and twenty field staff were diverted.

In 1985, the Director of the Division of STDs was
actually detailed to AIDS for a portion of the year and thirty
positions were detailed away from STDs to AIDS. In 1986,
forty-five positions from STD control were diverted and in 1987,
those positions were permanently reassigned to AIDS.

Budget sheets and FTE allocations also won’t reveal the
fact that the people who remain in the STD control program
actually spend a substantial amount of their time and energy
working on AIDS. A recent study shows that only six of the more
than ninety total STD staff actually devote all of their time to
STD activities. Twenty-nine said they spent up to 49 percent of
their time on AIDS; 23 spent 50 to 70 percent of their time on
AIDS and 38 members of the STD staff actually spend between 70
and 100 percent of their time working on AIDS.

Research has also been affected as researchers, who
previously have been investigating STDs have now turned their
attention and their laboratories to AIDS activities. A major
obstacle to the control of STDs, particularly the viral
diseases, is the lack of diagnostic and treatment methods.
Lacking resources, personnel and in some cases, cost-effective
diagnosis or treatment, the STD program of CDC has been forced
to make difficult choices. Its resources have been almost
exclusively devoted, as you have seen from Dr. Cates’ slides, to
the control of syphilis and gonorrhea.

Herpes, a viral- STD from which 30 million Americans
suffer, is now implicated as a risk factor in AIDS; yet, genital
herpes receives almost no resources through STD control programs.
The resources and manpower simply do not exist to deal
effectively with them. Next slide, please. |

There is a clear history that increased federal funding
for STDs translates to fewer cases of disease. Conversely,
reduced spending is probably a main contributor to increases in
STDs, such as we see today. And that slide shows what Dr. Cates

146

 
 

 

showed; the increase in syphilis versus dropping dollars’
available for syphilis control over the last ten years.

coc estimates that more than 13 million Americans each
year acquire an STD and more that 2.5 million of those are
teenagers. These diseases are important in their own right but

we now know that infection places these millions of Americans at
increased risk of acquiring HIV.

My recommendations to this Commission are really quite
simple and fairly echo everyone else's. Funding and trained
personnel are urgently needed for the research and control of
STDs as an important method of preventing HIV. More
specifically, I would include increasing federal spending for
STD research, including investigation on the role of STDs as a
risk factor in AIDS and on prevention measures, such as
contraceptive methods, which could be beneficial in the control
of the diseases.

Secondly, to increase allocations for STD research
training fellowships. These investigators are an investment in
the future.

Thirdly, to increase personnel for STD programs and to
increase the training available to them. The program cannot
continue to function with part time staff.

And, lastly, to provide a massive increase in funding
to provide a viable and stable STD prevention and control program
nationwide. Funding should be provided to adequately address the
tremendous epidemics of these diseases, particularly the
ulcerative ones.

I can think of no recommendation you could make, which
would be more cost effective and have a more positive impact on
the prevention of HIV infection.

CHAIRMAN WATKINS: Thank you very much, Ms. Wertheimer.
I would like to start the questioning with Dr. Crenshaw.

DR. CRENSHAW: Thank you very much for your comments.
The thing that strikes me as the most distressing and what I hear
all of you say is it seems that AIDS, which is a sexually
transmitted disease, has somehow gotten out of your hands a bit
in many respects, financially. In terms of the expertise
required to deal with this epidemic it is certainly parallel to
the expertise you already have in dealing with other sexually
transmitted diseases. It seems there has been a separation of
church and state here that really isn’t quite appropriate and
that a lot of cost effectiveness could occur if we used the same
ammunition to deal with the multiplicity of sexually transmitted
diseases.

147

 

 
 

 

Can you identify some specific problems that interfere
with this possibility and that are pulling AIDS people away from
you or taking your experts into AIDS rather than bringing them to
you and incorporating AIDS as one of the many STDs that we
battle? It seems that this ought to be a team effort.

DR. CATES: The problem that you put your finger right
on is that we initially robbed Peter to pay Paul. What has
happened is we have diluted out our efforts that had been
concentrated in the early years on one traditional genital ulcer
disease, syphilis, that had over time been effective in greatly
reducing syphilis levels.

We have diluted that to a point where it no longer was
effective in stemming the tide. What we were hoping was that
behavioral changes would occur as a result of the general
education messages for AIDS and directing counseling messages
one-on-one to those at risk of sexually transmitted diseases.

To date we have seen that in the gay male community.
We have not seen it in the heterosexual community and since we
have taken the resources away from the traditional tools of
screening, partner notification, outreach type activities for
syphilis in particular, we have seen increases in that
particular disease.

That is a simplistic way of representing it. At a time
when we have had some population at risk increases, probably
related to the sex for drugs concerns where we have identified
without concomitant resources to plow back into syphilis
intervention activities, an exponential growth of this particular
genital ulcer disease occurs...

DR. CRENSHAW: It also seems to me that whether it is
genital ulcer or chlamydia or any of the sexually transmitted
diseases, that you are dealing with the identical population
that is sexually active and perhaps with multiple partners, that
is at highest risk for AIDS, whether they have ulcer disease or
not. °

The other thing I would really appreciate your comments
on, and then I do have a few other questions, but I will wait and
see if there is time at the end of the panel, is my perception of
the AIDS virus is that it is a very democratic virus and that it
doesn’t discriminate too much between homosexual or heterosexual
people and I particularly am gravely concerned about our teenage
kids. I think that figures of sexually transmitted diseases that
we have among our teenagers are just a preview of what we might
expect with HIV if we aren’t proactive in these regards.

148

 

 
 

 

Could you comment a little bit about the various
diseases and teenagers and what you think we can do to help
prevent the incurable HIV infection from making inroads?

MS. WERTHEIMER: I think especially chlamydia is
extremely high among teenagers. In some college health units it
is one of the most commonly seen infections. Unfortunately, a
lot of the combination of messages, as you have heard, hasn’t
worked. Teenagers pretty much perceive themselves as invincible,
I am concerned that a lot of the school education programs are
going to focus so much on AIDS and perhaps not tell teenagers
that there are probably close to three million teenagers, who are
going to get an STD this year. This may not seem too important
to a teenager until you say that this means you are now at risk
for AIDS, that it puts you at greater risk. Other than that, I
think Dr. Cates can probably --

DR. CATES: But the answer to your question is "yes."
The only reason teenagers are a set-up for sexually transmitted
disease is because of behavioral patterns. We are fortunate
that the HIV infection has not reached levels in that teenage
population which, given their behaviors, you would see an
exponential growth in this particular virus.

But, again, just like the inner city minority
populations, teenagers are a potential powder keg if the
seroprevalence gets to that particular threshold level, at which
time the model begins its exponential rise.

CHAIRMAN WATKINS: Dr. Cates, I am going to step out of
turn here because I don’t really understand how the budget lines
can go like that when there is certain authority within the
Centers for Disease Control to take doubling of dollars and
rapped up dollars in ‘89, the Presidential budget, and not get
yourself more in balance.

It seems to me that if you all believe very strongly
that the co-factor or the risk factor linkage here is so
predominantly in the middle of the HIV epidemic spread
potential, it seems to me that you would find a more rigid
coupling and disallow the Peter to pay Paul because it seems to
me that they should move -- the funding should move in some sort
of linkage with itself. ; .

Have you not defined it in some sufficiently strong
way, either epidemiologically or otherwise to define this thing
and say, look, you can’t rob Peter to pay Paul. It is all the
same. They have got to move together. |

We found the same thing in the FDA. How can you fund
one line like this that is going to drive all the products
through one agency and then fund the agency like this? So, it

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seems to me we have a similar kind of an expose’ here. I didn’t
realize that you all felt so strongly and, yet, somehow we
haven’t put it into -- who is putting pressure on you to keep
your line level with the others going up? CDC can certainly
reallocate and pound the table wherever necessary to bring those
more into balance.

DR. CATES: Well, basically, we have two categorical
programs. To the extent that the AIDS prevention monies could
be reprogrammed into STD, we would probably have to go to
Congress to get the okay for that.

CHAIRMAN WATKINS: But has Congress been made aware of
the depth of your analysis and the study of linkage and the close
correlation? We have seen pictures of STD densities in New York,
for example, that coincide directly with other data on the AIDS
epidemic and it seems to me that -- and we have heard enough
testimony now, and certainly from you today, very compelling
testimony, it just seems to me that it is time to review the
bidding. Can we separate these one from the other at this point
or do they need to at least stay partially linked together?

DR. CATES: Well, we are certainly pushing for a
consideration. Over the years the STD funds have been the
"slush fund" for starting off many of the state-based AIDS
prevention activities. It looks like it may be time to see the
arrow pointing the other direction, but at the same time
everything needs more. It is not as if we have enough money at
the state level to provide for the myriad of activities that we
have been discussing just in the last two hours.

CHAIRMAN WATKINS: Have you made a proposal within the
Centers for Disease Control and your linkage with the states to
say what the funding should be if properly coupled with the HIV
epidemic that we should be putting into it and keep the two much
more in parallel than so significantly separated?

DR. CATES: That would be preferable in order not to
have one disease always -- or one infection always -- command
center stage to the detriment of all of the others. Kris, I
don’t know if you have a comment on this from Oregon’s
standpoint.

MRS. GEBBIE: Maybe there is something I can say more
easily than Dr. Cates can say. I think there has been immense
pressure from the Administration on the CDC to not show overall
growth and, therefore, to move things among categories and it was
easier to do it with the STD program because at least those
people were trained in many of the issues that were common to
AIDS as opposed to robbing them from the immunization progran,
which was equally vulnerable.

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CHAIRMAN WATKINS: Let me ask a question, though, Ms.
Gebbie. Is this because of the feeling that was reflected
earlier that there would be a magical spinoff and if we put the
dollars over here, we would see the spinoff over here in STDs,
as was presented here? And if so, and that hasn’t taken place,
and that was one of these budgetary myths that floats around
periodically to cut dollars and we have to review that now, is
this something the Commission should get into?

MRS. GEBBIE: I don’t think it was that logical at all.
I think it was simply AIDS is new. People are yelling louder
about AIDS. Let’s go for AIDS. I know that the testimony was
given to Congress. I know that the testimony was given to the
Administration by people in the field, saying the same things we
have heard here and it simply did not prevail.

I think a fundamental issue underlying this process
that may bear examination and it may be one of those wedges that
this Commission cannot get into, is that funding for prevention
services in this country are rejustified each year from zero, as
opposed to funding for illness treatment, which is entitled
through the Medicare program and is allowed to grow on the basis
of demand from the states.

But each of these prevention programs comes in year
after year with no entitled base and re-argues for a budget
separately and that leads to this kind of very tight budgeting
and this terrible trade-off process. Somehow there is a mythical
assumption that communicable diseases or other diseases will
vanish and don’t need maintenance. People are always looking for
which one can we cross off now. And I think this illustrates
very well that most of these diseases don’t vanish, don’t
evaporate and need sustained funding.

CHAIRMAN WATKINS: I think we are going to need quite a
bit more. I think we have found one of these rocks that I have
got to keep turning over. It just seems to me that this is an
area -- you are obviously a very competent group of witnesses
here and all telling us the samé thing and it just seems to me
that we have to know a lot more. I really would want maybe to
work with Kristine here, and perhaps you, and do something more
definitive in this area, and work with Jim Mason to really take a
hard look at this thing and see what recommendations we should be
making because I think you have given us a rather compelling and
somewhat frightening presentation here today.

We may be giving Peter a heck of a problem when we have
robbed him to the extent we have. I really think that we have
got a real problem here that we need to iron out and sit down
with you and get the proper projection on what you feel the
linkage should be, how it should be focused.

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We have said in many other aspects of our
recommendations that there are certain aspects of this particular
infectious disease that must be additive. We simply cannot rob
the other side because to do that puts many other things at risk
and we don’t know what we are doing to compound our problems and
amplify the disease itself. I don’t know if you have figures to
that extent or if you can take this kind of data and extrapolate
to what it: is really doing, particularly in high density areas,
such as New York and Miami and the other areas. It seems to me
we are really compounding our own serious problems here.

DR. ROSENBERG: I think there is one thing that is in
the CDC’s defense to some degree, worthy of note, and that is the
fact that most of the data that I cited has become available over
the last year or two; in other words, longer than the budgeting
cycle.

I think the other point that you raise is the degree to
which sexually transmitted diseases that we have been talking
about may be responsible for HIV. Part of what I did is looked
at some quantitative estimates of the study from Baltimore, for
example. The STDs that they investigated, were responsible for
about a quarter of the cases of HIV that were detected.

CHAIRMAN WATKINS: Well, I would like Ms. Gebbie and
the three of you and me to talk about this some more and I would
like you to help us ask you the right questions and we would like
to send those questiors to you at the Centers for Disease
Control, so we can get more to the bottom of this aspect of it.

I think that we have found another one of these very
important areas we need to know a lot more about. I think we
can do some things in our recommendations and we need to be more
sensitive to it. Do you agree, Kristine?

MRS. GEBBIE: Yes, I do, and, while I would be happy to
share some of these little assignments with other Commissioners,
I am also pleased to help wind some of this work up.

DR. CRENSHAW: I would be glad to help.

CHAIRMAN WATKINS: We will share it with Dr. Crenshaw.
This group up here will work with you, but I really do feel that
you have given us very special insights into this aspect of it,
which has been a dilemma. I mean, people are asking a lot of
questions. Why is this going on? We have heard presentations to
us about what it is doing in the San Francisco area among the gay
men and the decline is significant. So, there are lots of things
that I think this is going to tell us as we look at education and
what we may be doing. I would hope that the Centers for Disease
Control national campaign to prevent the spread. -- we have the
pamphlets going out to 45 million households. The question is is

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there anything there? Is there any message inside that regarding
STDs? I would hope there would be.

DR. ROSENBERG: Yes, there is.

CHAIRMAN WATKINS: Because that is going to be
critical. So, perhaps that then needs some substance to back up
the rhetoric from the federal level. Anyway, I bring that up.
Now, I will open the floor to other questions from the other
Commissioners, but it just came to mind as I heard all this and I
had to get it off my chest. Ms. Gebbie.

MRS. GEBBIE: In view of the hour, I think I will put
my questions in writing, but just to alert you, I think it would
be very helpful if you could provide us with some comments, one,
on the degree to which we have good evaluative data on what has
and hasn’t worked with these other diseases, not just hunches and
not just numbers of cases, but evaluation of techniques. That
would be helpful.

And, second, this whole issue of teasing programs apart
by diseases or grouping them by a transmission method, the
question of whether AIDS programming should be managed separately
or should be part of an integrated STD approach is an intriguing
one and has pluses and minuses and I think it would be helpful to
all of us to get the observations from your perspectives, the
three of you. We will look to see that later on, rather than I
think a long discussion of it now.

CHAIRMAN WATKINS: Dr. Lee.

DR. LEE: I have just come back from Africa and there
was one -- somebody had submitted some material on zambia. Which
one of you is --

DR. CATES: Zimbabwe, yes, you are right.
DR. ROSENBERG: That table, I think, is mine.

DR. LEE: Zambia is one of the places I was and a
British doctor told me, and he said he had been responsible for
the testing himself, that 90 percent of the Zambian army was HIV
positive. This has certain immigration overtones to it. I
mean, I assume that he had sleeping sickness or something. Can
you confirm anything like that? I have never read any
statistics in that area.

DR. ROSENBERG: I have not heard of’ that but I would be
very surprised.

DR. CATES: I haven’t heard of it.

‘Ss

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CHAIRMAN WATKINS: Dr. Crenshaw, do you have a
follow-up question?

DR. CRENSHAW: JI guess I would only add that I would
really appreciate help in two areas. One is that in dealing with
sexually transmitted diseases and the behavioral aspects, one of
the areas that once you get out of gynecology or urology that I
have noticed in medicine is often physicians aren’t as aware of
the extent of sexually transmitted diseases as they could be and
we could do more some in education. They will give two
prescriptions and not ask if there are any additional partners,
by way of example. You know, it is a habit and often the
individual won’t volunteer the other seven.

The other thing that would be helpful, I heard a
comment from the previous panel that 1,200 or so people who came
in protesting that perhaps many of them really didn’t need it or
weren’t in a high risk group and one of the concepts I find very
difficult to get across is that most sexual partners don’t know
the full scope of activity of their sexual partners and it is
very hard to tell from the historical report of one person
through a crystal ball, whether they are the worried well or need
to get tested. If you could comment a little bit on how little
you can tell from one person’s report on the scope of sexual
behavior that they may have been subjected to? You would be the
best to comment on it because of your experience of what really
does go on in terms of shared genital membrane disease.

DR. CATES: I agree with your comments on both counts.
Number one, I think physicians are inadequately trained to deal
with most matters of sexuality, especially the difficult
question of asking about sexual partners.

With regard to how much one partner ‘knows about other
partners’ activities. It is not infrequent that when you tell
one partner that they have been exposed, their first comment is,
"Don’t tell my spouse." So, we have a multiplier effect. This
is the reason that STDs are more than just 4 simple communicable
disease in today’s world, because you are dealing with the whole
issue of sexuality.

DR. CRENSHAW: Thank you.

CHAIRMAN WATKINS: I will ask you one more question.
In gonorrhea and chlamydia data, do we see any growth in that
particular sexually transmitted disease among adolescents? I am
talking about, let’s say, secondary school and, if so, what is it
doing? Do you have it broken out that way?

One of the things we have heard from Dr. Karen Hine
from Einstein Medical School, who is an expert in the area of
pediatric AIDS and so forth, is significant personal concern

154

 

 
 

 

 

about the HIV in adolescents and so the question is if we are
seeing growth in a number of sexually transmitted diseases in
adolescents.

Doesn’t that give us some considerable concern about
what the future may be there in the HIV seroprevalence among
adolescents, the potential for that? You talked to that point
that you reach when the modeling is going to tell you you are
going to see something. Maybe it is two years from now; maybe
three years from now. At any rate, do you have that data? Do
you have it broken out by age group, we will say, so to speak?

DR. CATES: We-do for gonorrhea. In teenagers the
gonorrhea rate has not gone down to the same extent that it has
in older individuals. Relative to the decrease in the older
ages, gonorrhea in teenagers has remained remarkably stable.

We don’t have consistent trend data for chlamydia in
country. In places that have been collecting data on a regular
basis -- once we started moving resources from syphilis and
gonorrhea to chlamydia, we started having an impact on trends.
Seattle and Indianapolis are the two places with this
experience. Teenagers are at higher risk than older women of
having chlamydia for combinations of behavioral and biological
reasons.

DR. CRENSHAW: Correct me if these figures are not as
current as you may have, but it is estimated that 30 percent of
sexually active teenagers have chlamydia, which is just a huge
number, if you think about it, and the answers we got back from
CDC on gonorrhea in teenagers in the 15 to 19 year age group,
were approximately 250,000 cases of gonorrhea reported and that
was estimated to be 50 percent underreporting, which means
500,000 nationwide of gonorrhea alone. So, that gives some idea
of what the potential is should they get seeded with HIV.

CHAIRMAN WATKINS: Could you give us whatever data you
have on the break-out in adolescents of sexually transmitted
diseases, anything you have along those lines. If you don’t
have it -- if you know some states that have data that is
perhaps broken down in a more useful fashion to do some
analysis, I would like very much to get a hold of that.

The data we had and is contained in my recommendation
to the Commissioners for our interim report, show that about
one-third of the seniors in our high schools today are involved
in drug usage that is more serious than marijuana. The marijuana
numbers are higher than that, but that is the data coming out of
-- I don’t know if it is the National Institute of Justice, but
we have the data in the Commission office. And you put those
combinations, the potential IV drug abuse linkage in adolescents,
to sexually transmitted disease growth, and you have all of the

155

 

 

 
 

ingredients for serious concern. This is why I am asking the
question. I was struck by Dr. Hine’s concern because she is
doing the work for CDC on pediatric AIDS, I understand, at the
Albert Einstein College of Medicine. So, it is related to that.
I am trying to put my arms around something right in that
particular area, only in a balanced way looking at STDs, as well
as the potential for getting HIV seroprevalence information.

You remember, Dr. Koop made a statement publicly about
getting information out of a number of high schools. Whether
that will take place, we are not sure from this morning’s
testimony, but certainly packaging up something like that ina
way that would really be useful in order to do an analysis of
what is really going on, we would be informative.

Thank you very much for coming before the Commission.
We will keep the lines of communication with all of you open.
Ms. Gebbie and I would just like to chat with you briefly for a
minute and see if we can cement a little task force effort on
our joint parts and maybe Dr. Crenshaw would be willing to join
us just to chat briefly on how we might proceed from here.

We appreciate you staying this long and staying with us
on this important issue and we will commence our hearings again
tomorrow for the Commissioners at 9 o’clock here in the
Interstate Commerce Commission building. So, we will stand
adjourned until tomorrow morning at 9:00.

 

(Whereupon, at 6:07 p.m., the meeting was recessed, to
be reconvened at 9:00 a.m., the following morning, Wednesday,
March 2, 1988.)

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