PRESIDENTIAL COMMISSION ON THE
HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

HEARING ON IV DRUG ABUSE AND HIV

ao

Dirksen Senate Office Building
Room 628
First and Cc Streets, N.E.
Washington, D.C.

Friday, December 18, 1987

COMMISSION MEMBERS PRESENT:
ADMIRAL JAMES D. WATKINS (RETIRED), CHAIRMAN
COLLEEN CONWAY-WELCH, PH.D. |
THERESA L. CRENSHAW, M.D.
KRISTINE M. GEBBIE, R.N., M.N.
BURTON JAMES LEE III, M.D.
FRANK LILLY, PH.D. |
BENY J. PRIMM, M<D.
CORY SERVAAS, M. De
WILLIAM B. WALSH, M.D.

POLLY GAULT, EXECUTIVE DIRECTOR

 

 
 

 

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

PAGE
PANEL NINE (continued)
George DeLeon, Ph.D., Phoenix House 249
Shirley Coletti, Executive Director 255°
Operation PAR, Parental Awareness and
Responsibility
PANEL TEN

OUTREACH EDUCATION
Joyce Jackson, Coordinator 281
AIDS Community Support Group, New Jersey
State Department of Health

Harvey Feldman, Ph.D., Project Director 283
Midcity Consortium to Combat AIDS,
San Francisco, California

Wayne Wiebel, Chicago's AIDS Outreach 288
Intervention Project

Robert Bixler, Deputy Director for AIDS 291
Education and Training, Institute for
Narcotics and Drug Research, Incorporated

Andrea Bowden, Supervisor 295
Science and Health Education
Baltimore City Schools

APPENDIX - SUBMITTED TESTIMONY

 

 
 

 

I-N-D-E-X

WELCOME
Admiral Watkins, Chairman

Beny J. Primm, Hearing Chair

PANEL SEVEN
MODES OF TRANSMISSION/SEXUAL TRANSMISSION
Billy S. Jones,
Whitman Walker Clinic, Washington, D.c.

Constance Wofsy, M.D., Director
AIDS Activities, San Francisco, California

Nancy Padian, Ph.D., Research Epidemiologist
University of California, Berkeley, California

Barbara Gibson, Director |
AIDS Outreach Services, The Addiction Research
Treatment Corporation, Brooklyn, New York

PANEL EIGHT
MODES OF TRANSMISSION/PERINATAL TRANSMISSION
Loretta Finnegan, M.D., Professor of Pediatrics and
Professor of Psychiatry and Human Behavior

Thomas Jefferson University, Philadelphia, Pennsylvania

Margaret C. Heagarty, M. D., Director of Pediatrics
Harlem Hospital Center, New York

Howard Minkoff, M.D., State University of New York
Health Sciences Center

Janet Mitchell, Beth Israel Hospital

PANEL NINE
RISK REDUCTION/TREATMENT
Joseph Mill, III, National Association of State
Alcohol and Drug Abuse Directors; Director,
Division of Addiction Services State of Indiana

Karst Besteman, Director
Alcohol and Drug Problems Association

Mary Jeanne Kreek, M.D., Rockefeller University
Robert G. Newman, M.D., President

Beth Israel Medical Center
New York

PAGE

163°:
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164
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194

mae

197°"
200

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231

235

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246

 

 
 

 

PROCEEDINGS
(9:05 a.m.)

MS. GAULT: Ladies and gentlemen, members of the
Presidential Commission, my name is Polly Gault and I am the
designated federal official and in that capacity, I declare this
meeting officially open. Mr. Chairman.

CHAIRMAN WATKINS: On behalf of the Presidential
Commission on the HIV Epidemic, I would like to welcome today’s
witnesses, public officials, medical professionals, press-and
members of the general public to the second day of this
Commission’s hearing on IV drug abuse and the HIV epidemic.

—"

As mentioned yesterday in~our preliminary report to the
President, the Commission identified IV drug abuse as an area
that needs immediate attention. I believe we made some excellent
progress yesterday as we heard testimony from 15 of the leading
experts in the nation on the subject of IV drug abuse and the
HIV. °

I look forward to the testimony to be offered today as
we begin to speak with treatment providers on the capacity of the
nation to treat IV drug abusers and I would like once again to
turn over the Chair to Dr. Beny Primm, a nationally recognized
leader in the field of IV drug abuse treatment. Dr. Primn.

DR. PRIMM: Good morning. ‘Thank you very much, Mr.
Chairman. I would like to also again welcome our distinguished
group of panelists, press and the public to the second day of
the Commission hearings on IV drug abuse and the Human
Immunodeficiency Virus Epidemic.

Yesterday we heard some compelling testimony on the
dimensions of the problem of IV drug abuse and HIV. We also
learned of the disproportionate impact this double scourge is
having on minority populations, on the cities, and the criminal
justice system and we begin now to analyze the modes of

transmission of the virus.

In today’s hearing, we will look forward and look at
the modes of transmission from IV drug abusers to their sexual
partners and to their children. In addition, we will also
examine the factors involved in the disproportionate
representation of minorities among CDC reported heterosexual
AIDS and HIV-positive cases.

Finally, our agenda for today includes distinguished
members of the treatment and education communities who will share
with us their years of experience in treating IV drug abusers and
in working with them on prevention and early intervention.

(163

 

 
 

 

They will assist the Commission in seeking possible
solutions to some of these problems. This problem demands the
attention of the country’s leading experts. We have with us
today many of those experts and we look forward to hearing their
testimony. Our first panelist today, panel seven, on modes of
transmission and sexual transmission is Mr. Billy Jones from the
Whitman Walker Clinic here in Washington, D.C. Mr. Jones, you
may begin.

MODES OF TRANSMISSION/SEXUAL TRANSMISSION

MR. JONES: Thank you. I appreciate being invited as a
guest. JI will focus the majority of my comments specifically on
sexual transmission of HIV among gay IV drug abusers and their
partners. I wish to note that among the IV drug users in the
Metropolitan Washington, D.C. area, we are finding significant
numbers of persons who can be identified as sexual minorities and
by sexual minorities we mean gay and bisexual men as well as
lesbian and bisexual women and transpersons which we refer to as
transvestites, transsexuals or other labels that they or society
may bestow upon them.

On the streets of Washington, outreach workers are in
contact with an average of about 1,900 persons per month of which
about 42 percent or about 835 persons are known to be IV drug
users and about 16 percent or about 300 of our contacts are self
identified sexual minorities.

About 20 percent of our contacts or about 400 persons
on the streets of the nation’s capitol are visibly involved in
prostitution, about 12 percent female and about eight percent of
what we refer to as male hustlers and/or the cross-dressed
community or the transpersons community. It is our observation
that the majority of prostitutes on the streets are heavily
involved in multiple chemical substance use of not only IV drug
use but also oral drugs as well as alcohol.

Wherein some at-risk sexual behaviors are still
occurring among IV drug users as well as non-IV drug users, we
find the sharing of drug paraphernalia as much of an at-risk
transmission factor as the sexual activities. While not
necessarily practicing safe sex with their significant other,
most prostitutes are practicing safe sex as they understand it
with their customers.

Male and female prostitutes are using condoms for oral
and penetration sex. Many male prostitutes are refusing to
engage in any sexual activity beyond masturbation or passive
non-recipitory oral sex. Most transpersons only engage in the
low risk sexual activity of oral sex with a condom. However,
many potential customers attempt to negotiate sexual activities

164

 

 
 

 

without a condom by offering more money. Wherein many female
addicts may be involved in prostitution as a means of supporting
their addiction, many of what we call "hard core" male IV addicts
are not sexually active in terms of penetration sex.

Drugs often replace sex emotionally and physically.
Men may talk, talk, talk about sex but erections come few and far
between for most of these men who are continuously strung out on
Iv drugs, whether they be uppers or downers and wherein many
women may continue to be physically sexually active, emotionally,
the desire for sex is often not there so we are told.

A survey of the impact of drugs on a person’s sexual
libido will reveal that different drugs cause varying responses
in the sexual drives of individuals. Some men and women report
that when they are mood altered on drugs that they feel more
sexual even if feeling sexual is passive or less inhibited.

Yet others say that they have no sex drive when they
are strung out on drugs. All drug and alcohol users will
acknowledge\that they are less inclined to limit their sexual
activities to safer sex guidelines when they are mood altered.

Wherein some sexual minorities who are IV drug users
closely identify with the gay subcultures, many if not most,
identify more closely with the drug subcultures. Therefore,
AIDS outreach and education efforts aimed at IV drug users must
be sensitive to the reality that drug subcultures are not only
pluralistic in terms of gender, race, class, age and socio-
economic status but also in terms of sexual orientations,
preferences, attitudes and behaviors.

small percentage of our contacts have been women who
self identify themselves as lesbians or bisexuals and are
involved in prostitution with men and/or IV drug users. Many
lesbians perceive themselves to not be at risk because of their
sexual orientation or primary relationship with a woman.

A significant number of lesbian or bisexual women are
closeted to their female or male partner that they are in
multiple relationships, are involved in prostitution or are drug
users. Thus, AIDS education messages must also be addressed to
the subcultures of lesbian and bisexual women.

I would like to make several recommendations, that
rehabilitation or drug treatment programs more aggressively
address AIDS education for clients and their significant others;
that HIV testing not be pushed by drug treatment programs but be
offered as an option for clients and their significant others
only if pre and post HIV antibody counselling programs are in
place; that rehabilitation/drug treatment programs more
aggressively address human sexuality issues for clients and

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their significant others. Such education focused on human
sexuality should aim to be value neutral and address not only
heterosexual behaviors and relationships and lifestyles but also
homosexuality, bisexuality and transgender issues.

One of the things that we have found is that when we
ask people in AIDS education and drug treatment programs or who
are in the penal system or institutionalized programs, "How many
of you have ever had a structured human sexuality course," we may
get one or two but most of them, about 90 percent, will indicate
that they have never had a structured AIDS education seminar
indicating that most of what these persons know about sex, they
have learned from porno magazines or peers on the street or just
word of mouth or instinct. /

/

We would also urge that AIDS edudation programs be
aimed at IV drug users not ignore the fact that nationally eight
percent of persons diagnosed with AIDS are gay and bisexual
men and that IV drug use is known to be a part of the lesbian
subculture; that more education programs and services be
implemented for women and youth and minorities; that community
based agencies be encouraged and supported via training,
technical assistance and funding to aggressively address AIDS
and substance abuse.

We would further urge that local community merchants
be encouraged to support AIDS intervention efforts by making
available to customers the tools: needed to -prevent the
transmission of HIV such as latex condoms, water based lubricants
and bleach.

My comment here is that we just recently: completed a
survey in the Metropolitan D.C. area in areas in which IV drug
users and prostitutes frequent, while many of the establishments
were carrying condoms, virtually none of them were carrying
water-based, water-soluble lubricants and the survey was done
because there were so many complaints saying that the condoms
broke and it was coming from not an understanding that using the
proper lubricant was just as important as using the condom and
many of the men were feeling because they were purchasing a
lubricated condom they didn’t need additional lubricant. So
there is some education there but also needing to do some more
education and some nurturing with the merchants to carry the
appropriate products that are available.

We would also urge that legislation which now makes it
a crime to be in possession of drug paraphernalia be reconsidered
in light of our education message of "don’t share works" and our
meaningless message for addicts that says, "just say no."

We would also urge that legislation which currently
prohibits lesbian and gays from legal marriages be considered

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or to acknowledge the marriage of lesbian/gay couples. We.
would: urge that mandatory AIDS education, but not testing.
programs be implemented not only in drug treatment programs. .
but also in incarcerated settings, VD/STD settings and all’
other institutional settings in which IV drug users are likely
to be encountered.

We would further recommend that AIDS education programs
place stronger emphasis on co-factors of alcohol, methadone and
other drugs in terms of their impact on the immune system and
that AIDS education programs place stronger emphasis on persons
diagnosed as living with HIV infection who are more likely to be
encountered on a day-to-day basis than persons living with a
diagnosis of AIDS.

Our emphasis here is that we run into a great deal of
relapse because persons finding themselves to be HIV positive
immediately translate that to mean that I now have AIDS and I
am going to die so what is the point of all of these intervention
programs and they will often continue or actually pick up and

increase their addiction. Thank you.

DR. PRIMM: Thank you very’ much, Mr. Jones. Dr. Wofsy.

DR. WOFSY: Thank you. I am glad to have the
opportunity to speak to you. I think that in considering issues
of IV drug use and its impact on the AIDS epidemic, there are.
several points that are recurring themes. one is that. -- my
intravenous drug use and AIDS is very much a family;issue and:
it brings a focus that is different than the experience, we have,
had certainly in San Francisco where we have been dealing with
primarily gay men and have not been dealing with the larger

family issue.

Secondly, HIV and IV drug users is very ‘much a,women’s.
issue. Of the women who are infected, 52 percent use IV drugs;
27 percent get it from heterosexual transmission and more than .,
half of those women who get it from sex get it from a man. who
uses IV drugs. A much smaller percent get it from men who are
bisexual.

There are now a number of studies and I expect that
you have heard specific testimony from some of them being
conducted in inner city New York and elsewhere. Of the women
who are positive, reasonably detailed questioning has shown that
as many as 50 percent aren’t aware of the risk that they have
that has led to their infection and that is true not only for
HIV but also now we are finding in several recent reports that
Hepatitis B as well, that women are infected who do not fall into
the risk categories that have been defined.

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It is a women’s issue also because women have
traditionally been given or taken responsibility for birth
control, sex control, infection control. Over the last 20 years,
women have taken or been given the responsibility of birth
control pills, what is going to be done about contraception and
this has now permeated a generation or a generation and a half
and while women particularly in the cultures that are involved
so predominately in some Black populations, Latino and the many,
many other'cultures are not traditionally those who have the
power, they are expected often to teach, to educate, to make sure
fhat this happens, that the condom is worn, that they don’t get
pregnant and very often they are really quite powerless to make
those kinds of decisions.

It is also an information issue. We have enormous
networks for getting information out to those who have an
intellectual fascination who are personally affected, who read
the kind of literature where so much valuable information has
been expressed but in the language that is really needed to get

© people who are affected and using IV drugs, we have to be much
more creative.

Let me tell you about some of the studies we have been
involved in which is, I think, why I was probably invited here.
About two and a half years ago at the University of California
at San Francisco General, I and my colleagues got together an
organization because we were concerned about the issue of HIV
infection in prostitutes actually. It was said by many that
prostitutes were going to be the means by which HIV entered the
general population.

I think that we have found that that actually is not
the case and that prostitution and IV drugs go hand-in-hand. So
we began to study sexually active women arbitrarily, somewhat
arbitrarily defining sexually active women as someone with five
or more partners in the last three years and have now studied
more than 700 women focusing not only STD clinics, on neonatal
units but going out into the street, into women’s clinics and
into community organizations not targeting IV drug populations at
all with a couple of very specific exceptions but trying to reach
the very population that keeps asking the question, "Is HIV going
to infect me? I am a person who is at the time of my life where
I am having many relationships, I am having several partners at
the same time, is HIV an issue for me?" and we have tested these
700 women.

Overall, five percent of this population, who have
volunteered to come into our study, is positive.

DR. PRIMM: What was that, seven percent?

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DR. WOFSY: Five percent of the 700. Breaking ,down the
reason that these women have become infected, approximately half
are infected because of their personal use of IV drugs even ”
though we have avoided recruitment with all but a few rare 4
exceptions in areas where we would expect to find a predominance
of IV drug users.

Although in our population as a whole of the 700
women, only 21 percent had any history of personal IV drug use;
44 percent of the seropositives use IV drugs. As part of that
population of sexually active women, we have studied prostitutes
and 159 of those we have studied have been what we call in the '''
"sex industry" which is the exchange of physical sexual activity
for money or drugs.

The seroprevalence in the prostitutes or the sex
industry workers that we have studied is the same as the rest
of the population and we participated with the CDC in their
multi-center United States study of prostitutes and found
likewise in the population that we looked at in that study,
nine out of 146 women that we studied were positive and all
of them used IV drugs.

The means by which we have conducted our studies has
been a little unorthodox and I think has really taught us a lot:
To study prostitutes we wanted to get out to where prostitutes
are. We have employed former prostitutes on our research staff. '
We have trained them in HIV issues and we go out in teams onto
the street in the various parts of San Francisco and Bay Area
counties. é

a4

The former prostitutes are very familiar with the
street. They know who the prostitutes are and who isn’t and
to my eye initially becoming a little more learned, all of my
stereotypes about prostitutes simply fell away. re

While there are certain parts of San Francisco where . |
the almost caricature of a street walker in a short skirt and x
fishnet stockings is very much in evidence, in many, many
other parts of the city and Bay Area where we do research,
the prostitutes, it blows my mind who they turn out to be.

They are women like anybody else walking on the street
in blue jeans or a dress and the stereotype just doesn’t match.’
Many of the prostitutes we study, are not IV drug users,
wouldn’t dream of using IV drugs and even take a certain pride
in their prostitution. They do what they do with a sense of
professionalism, different than my sense of professionalism, but
a sense of professionalism that is like the kind of work that
Many other people do.

169

 

 

 
 

 

Our findings mimic very much what Mr. Jones described
which is that the prostitutes use condoms with their customers.
In fact, they demand it. They have become artful sometimes in
appearing to have a kind of sexual activity that they are not
-really engaging in, they work toward doing hand jobs and blow
jobs.

They have found ingenious ways to attempt to get the
partner to use a condom and one of our research staff, a former
prostitute, has found that the best teaching method is at the end
of the negotiation for the pro to say, "If you won’t wear it for
me or for you, wear one for your wife."

They have gotten a fair amount of responsibility. I
have also come to learn that the majority of the customers of
prostitutes, street, call girls, at whatever level are married
men in family relationships.

The last point I wanted to make about our study that I
think we have come to understand is that, women with multiple
sexual partners engage in different activities than identified
in some of the partner studies where there is a lot more detailed
information.

They engage in a much higher frequency of rectal
sex, of sex during menses than in the studies of, for instance,
hemophiliacs or even IV drug using partners that have been
published and very different than the studies published from
Africa.

A comment about testing, in our study, in Dr. Fischl’s
study and in other studies of partners and sexually active
individuals, it has been revealed that people do change their
behavior when they know their serologic status.

In our own studies, 21 percent of the women who were
HIV positive have become abstinent. In a study by Dr. Fischl in
Miami looking at partners, she likewise found that approximately
nine out of 32 couples chose abstinence as the way of dealing
with their seropositivity.

I mention this not so much as a commentary on testing
but a commentary on studies, that all the information that has
been developed in this explicit way comes from research studies
in which the individual is highly protected by confidentiality
and basically gives over their vulnerability to the investigators
under the trust that the investigator will protect the research
subject.

The research subject is often also going back
repeatedly to the investigator for more information, for
reinforcement of that trust and for education that will help

170

 

 

 

 
 

them in leading their now HIV infected life and their sexuality.
As far.as what is needed, I can echo 99 percent of the things
that I expect have been presented here and that Mr. Jones
commented on. I wanted to add a few’ others or at least comment
on a few in my own words.

One is that to get information, everybody in society
hears the information best from their relative peer or someone
who speaks in the language that is most similar to their own
and that is certainly true whether it is a different culture, a
different race, a different habit, IV drug use, whether it is
somebody who is gay. One hears best from one’s own peer network
but the peer network for IV drug users is not one that is
educated or sophisticated in many instances.

The corollary to that is the stereotype issue like
prostitutes, not all IV drug users fit the stereotype that we
all imagine in the inner City busy emergency room where we want
to tear our hair out because of the IV drug users that come in
at the end of the IV drug use bell curve of the spectrum.

I will make a case in point in that one of our
researchers was just trying to deal with a woman, an IV drug
user, who was not very educated and who was at very high risk
and said, "Do you know what safe sex is?" The woman said, "You
bet, if he won’t use a condom, I pour bleach on his dick."

(Laughter. ]

DR. WOFSY: That is humorous, it really is but I think
it makes an extremely important point which is that a little
information not given explicitly and in the right way gives
misinformation and this woman had sort of gotten bits and pieces
of it, but she hadn’t gotten the whole picture.

In California, the distribution of literature that is
explicit, that is done in cartoons that shows erect penises that
involves the actual facts people need to know to protect
themselves can’t be given out if it comes through various state
organizations.

I think once again it forms a gap between those who
have the intellectual processes to understand the euphemisms that
we use to convey information to one another like you may wish to
terminate your pregnancy, people without those same means of
intellectualization don’t understand those words and they need
to hear the actual words and yet at the same time not have it
assumed that the only words they can understand are "fuck" and
"shit" and "dick" and "cum."

There needs to be a translation process so people can

hear the variety of words that will match their experiences.
7 : - se 171 - “
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Tope Nemes:
\

 

 
 

The issue of men’s responsibility is something that I
want to emphasize. Since we work as a study with women, we are
very well aware of how much more the woman half of the partner is
given the responsibility and is trying to take the
responsibility.

Women collect in perinatal clinics, in women’s groups,
at gynecologists and we can hope to target information and we
must do that and should do that. Men don’t accumulate in any
Similar logical place so they sort of drift off in our sense of
responsibility in giving them the sense of needing to take
responsibility and share it with the women.

To target only women is like treating gonorrhea in
women and failing to deal with the transmission coming repeatedly
from one partner who may go from woman to woman to woman to
woman.

We face the issue in San Francisco of condoms,
needles, et cetera being confiscated as evidence against
prostitutes and of illegal activities which means that sharing
becomes inevitable because you can’t transport the works or that
prostitutes were having their condoms taken from them because
they were evidence of prostitution and if we want people to
conduct their lives safely, we have to keep within the penal
system, of course, for those activities that are illegal and that
are being managed fairly but we also must recognize that our
first goal is to keep people’s health safe and intact. Thank
you.

'

\ DR. PRIMM: Thank you, Dr. Wofsy. Dr. Padian.

DR. PADIAN: Thank you, Dr. Primm. As of November 23,
1987, over 3,300 AIDS cases have reported among women, that is
seven percent of the total of 46,340, and over 1,000 cases have
been attributed to heterosexual contact with a person with AIDS
or at risk for AIDS and that is approximately two percent of the
total.

Although two percent may seem like a small proportion,
in absolute terms, this number has more than tripled over the
last two years. That is, although the relative distribution of
cases has remained fairly constant, the absolute number of
heterosexually transmitted AIDS cases had risen dramatically.

Intravenous drug users play a significant role in
maintaining the heterosexual spread of AIDS and the spread of
AIDS to women for three reasons and some of these Dr. Wofsy has
already mentioned.

172

I

/

 

 
|

One, more than half of all AIDS cases among women have
occurred among female intravenous drug users.

Two, the next largest source of infection among women
occurs through heterosexual transmission, sexual contact with
an infected partner, and intravenous drug users represent the
most common source of infection among most such cases in both
male-to-female and female-to-male transmission.

Three, transmission rates of Human Immunodeficiency
Virus tend to be higher between intravenous drug users and
their partners when compared with such transmission between
hemophiliacs, bisexual men or people infected from contaminated
blood transfusions to their partners.

In 1982, from the beginning of the epidemic,
transmission of the AIDS virus has been reported in female
intravenous drug users and between male intravenous drug users
and their female partners.

Today, more than 50 percent of all female cases
reported to the CDC have occurred among women who are intravenous
drug users and almost 70 percent of cases attributed to
male-to-female heterosexual transmission occurred through sexual
contact with an intravenous drug using partner.

In New York City alone, 87 percent of all heterosexual
cases have an intravenous drug user as the primary source of the
AIDS virus.

It should also be noted that most of the
heterosexually transmitted infection observed among minority
individuals is also associated with intravenous drug use. CDC
statistics reported a year ago indicated that over 85 percent of
AIDS cases attributed to sexual contact with an intravenous drug
user occurred among blacks and Hispanics. ;

In addition to acting as a reservoir for HIV infection |
among heterosexuals like infected hemophiliacs, bisexual men or
individuals infected through contaminated blood transfusions,
intravenous drug users are particularly important because rates
of transmission tend to be higher among their sexual partners
than among partners of infected individuals from other risk
groups.

For the last two and one half years, I have been
conducting a heterosexual partner study where we recruit the
opposite sex partner of individuals infected with the AIDS
virus or diagnosed with AIDS or AIDS-related complex. All of
my partners in my study are non-intravenous drug using people.

173

 

 

 

 
 

 

|

Most of them' are the female partners of bisexual men
and the rest are sexual partners of intravenous drug users or
hemophiliac men. Rates of infection among the female partners of
infected men tend to be about 25 percent in the sexual partners
of men in all risk groups with the exception of the female
partners of intravenous drug users.

Since the inception of this study, rates of infection
in this group are more than 40 percent. This high rate of
transmission has been confirmed in a variety of studies that
look at the heterosexual partners of intravenous drug users
throughout the country.:

One explanation for this phenomenon is that these
partners at some time were actually intravenous drug users
themselves although they either deny it or cannot recall this
exposure at point of entry into the study.

Other explanations include biological parameters that
may differentially affect infectiousness causing intravenous
drug users to be more efficient transmitters or partners of
intravenous drug users to be more susceptible to infection.

However, regardless of the explanation, heterosexual
partners of intravenous drug users experience high rates of AIDS
virus transmission. This is particularly important in view of
the fact that at least in New York City, Dr. Don Des Jarlais who
I know spoke with you yesterday reported that male intravenous
drug users are more likely to have sexual contact with
non-intravenous drug using female partners.

In addition, Dr.. Des Jarlais has pointed out that if
the intravenous drug using men, practice safer sex at all, it
is more likely that they will do so in casual relationships,
one night stands, rather than in primary relationships and we
know that it is, in fact, primary long-term relationships
characterized by repeat exposures that are more likely to result
in transmission. So, for example, with the one night stand, they
might use condoms but with their long-term sexual partners who
they are repeatedly exposing, they are less likely to practice
safer sex.

The importance of intravenous drug use directly or
through sexual contact with intravenous drug users has also been
noted among prostitutes and this both Dr. Wofsy and Mr. Jones
spoke about. .

A study conducted by CDC among over 1,000 prostitutes
nationwide and Dr. Wofsy oversaw one aspect of that study found
intravenous drug use and sharing needles to be significantly
associated with HIV infection among prostitutes and similar
findings have been corroborated worldwide.

174

 
 

 

I found the same to be true in a study I conducted in
collaboration with Dr. James Carlson at the University of
California at Davis. We compared HIV infection rates and
associated risk between prostitutes working in legal brothels
with prostitutes who were incarcerated in the Nevada State
Prison.

In this study, intravenous drug use or sexual contact
with intravenous drug using men was, in fact, the only risk
associated with HIV infection. Number of sexual partners,
number of sexual contacts, use or lack of use of condoms were
not correlated with AIDS virus transmission.

This study highlighted the importance of intravenous
drug use in the heterosexual spread of AIDS and the fact that at
this point in the epidemic, heterosexual sexual activity per se
probably contributes less to maintaining the spread of the
Gisease than does intravenous drug use again either directly by
intravenous drug use or indirectly by sexual contact with
intravenous drug using people. In conclusion, to date most
heterosexual transmission of HIV has been associated with
intravenous drug use, either directly by sharing needles or
indirectly through sexual transmission.

Intravenous drug users represent both the most common
and the most efficient source of heterosexual transmission
of HIV. The urgency of developing prevention programs in
communities characterized by intravenous' drug use and sharing
of drug injection equipment is obvious. (\Such programs should
include emphasis on risks associated vitn| sharing dirty "works"
as well as risks associated with sexual t

ansmission.

I would: like to add two saaition\t comments that aren’t
in my written testimony. It occurred to me \last night when I was
reading this that probably one of the reasons.you invited me to
come is to represent what is going on in my gedgraphic area and
you have noticed that a lot of my overall statistics are CDC and
New York City although I did refer to some local studies and that
is because, I am sure, Dr. Wofsy mentioned and you may have heard
yesterday, at this point in San Francisco, only) 1.3 percent of
all reported cases have been attributed exclusively to
intravenous drug use.

Rates of seroprevalence among intravenous drug users
_ seem to vary between ten and 20 percent depending on the study

which is vastly different than what you have heard in New York
City but I think that this really highlights the fact that there
is still an opportunity through rehabilitation programs to do
something in San Francisco before it becomes; as serious as it has
in New: York City.

\
\ 175

 

 
 

 

I would also like to make a recommendation which I
neglected to make in my written testimony and that is programs
aimed at prevention, intervention and rehabilitation among
intravenous drug users should include outreach to non-
intravenous drug using sexual partners as well.

In my study like Dr. Wofsy’s study, we did find
significant behavior change among the partners of infected people
after entry into the study although again as Dr. Wofsy mentioned,
we can offer guarantees of confidentiality and continuous
counseling that I think are unique to research studies so I
would not recommend that kind of testing of sexual partners
without those kinds of guarantees of confidentiality and good
counselling programs that are more than just one shot deals.
Thank you.

DR. PRIMM: Thank you very much, Dr. Padian.
Ms. Gibson.

MS. GIBSON: Good morning and it is a pleasure to be
here and thank you for inviting me. Before I read my testimony,
it was interesting as I listened to the previous information that
has been shared with you and I was thinking in terms of the
prostitution. In our program which is the Addiction Research
and Treatment Corporation located in Brooklyn, which services
about 2,100 addicts who are in both the burroughs of Brooklyn
and Manhattan, we have a small number, of women who admit to
prostitution. When the counsellors talk to them about the use
of condoms and about their risk behavior because in the instances
that I am referring to, the women are not aware of their HIV i
status. As far as they are concerned, they are not infected. i
But when talked to about using condoms while they are working,
most of them do not use condoms and most of them feel that it is
not their problem and they will say that it is the problem of the
john and if he is infected, then that is his problem.

I couldn’t help but think after hearing this a few
times that probably on an unconscious level two things are
happening; first of all, the prostitutes probably are very much
believing the general societal value that is assigned to the
sex industry which is that it is bad and that they are in some
way doing something bad and the customer is doing something bad
so whatever happens to him, he deserves because he is doing
something bad. I have talked about that with some of them and
they say, "Well, then if he is worried about it, he ought not
to be there."

So I think that it is important when we begin to look
at some of the things that make it difficult for us to research
the population the way we are trying to do. One of the other
situations that I think is very key in dealing with some of the
addicted population that I deal with and I deal with people who

176

 

 
 

 

have a long history of drug abuse, who have been on the street
for a long time, who by the time they come to us for treatment,
their bodies are in bad shape, they are filled with needle marks,
edema is very evident so that there has been a loss of sense of
hope. There has been a loss of sense of respect and caring for
one’s self.

There is always that hidden hope that maybe in a
program something will happen but it is really an uphill battle
because there is an approach avoidance environment that exists.
There is fear. There is guilt and there is wonder if anybody can
help me, certainly I can’t help myself. .

So it is sad in one respect but more than that, it is
reality so we get over the sadness quickly and we begin to try
to make some changes where possible. I will make some other
comments after I have read my statement.

In view of the fact that intravenous drug abusers
represent the major vehicle for the spread of the Human
Immunodeficiency Virus to the heterosexual community, it is
useful to note sexual behavior of IVDAs.

A study of 96 patients of the Addiction Research and
Treatment Corporation which is a methadone maintenance treatment
program in New York has revealed some of the following
information regarding sexual behavior of some of our addicts.

Ninety-five percent of the sample, 56 males and 36
females, reported only heterosexual contacts between the period
from 1977 to 1985. One male and two females admitted bisexual
contacts, homosexual contacts were reported by one male and one
female during the same time period.

While 767 sexual partners were reported by the study ‘'
subjects, only ten percent of the sample stated they had more
than one sexual partner at the same time during the study period,
Thirty-seven, 15 men and 22 women, of the sample reported having
only one sexual contact between 1977 and 1985.

Of those study participants who claimed only
heterosexual contacts females were more likely than males, 61
percent and 26 percent respectively, to have had a single sex
partner during the eight year period under question.

Twenty-eight percent of the males were in sexual
contact with greater than 12 persons during this eight year
period. Only one female admitted at least this number of
partners and she stated she was in the sex industry.

I want to stop here for a minute. I certainly respect ©
that title and I must say that I learned that from reading some

177

 

 
 

 

of the many studies that have gone on in California and I think
that the fact that calling it the sex industry gives it another
quality which is important in dealing with women in the sex
industry and, of course, it makes us examine our values before
we can effectively deal with them.

Only 13 percent of the study sample admitted to use
of condoms during the targeted eight year period. Over half, 65
percent, of the sexual contacts of the study participants were
users of drugs. . Female study subjects reported that 63 percent
of their sexual contacts used drugs intravenously while only 32
percent of the sexual contacts of the male study subjects were
reported to use injectable substances.

These results indicate that over half of this sample
reported sexual contacts with non-intravenous drug abusers, thus
demonstrating that sexual affiliation with intravenous drug
abusers by non-drug using persons, who I,am finding out in New
York City are mostly women, is a prime factor in the probable
transmission of HIV infection outside of the drug using/abusing
community.

The fact that male IVDAs reported a greater percent
of non-intravenous drug using sexual contacts than female IVDAs
coincides with. previous investigations some of which you have
heard today. ,

. 3 ‘ : ' .
What is herewith suggested is that males represent the
greater number of transmitters of the HIV infection to the
general heterosexual population. Another very important issue .;
that emerges from this study is the dual route of HIV infection |,
experienced by. women because the majority of sexual contacts are.;
IVDAs and they themselves are drug users. These two facts may
explain the higher HIV infection rate seen among women in man
seroprevalence studies. ;

It is believed that the best prevention at this point
is education. What has emerged pursuant to this fact is a thrust
to reach every segment of the Nation’s population especially
those at highest risk for infection with the HIV.

Thus, we have become gender specific but only to a
limited degree, culture specific, lifestyle specific and we
think sex specific.

What may well be upon us at this point in time is the
critical need to assess our methods of education and the quality
of information we are imparting. It is understood among
substance abuse treatment professionals that participation ina
drug abuse treatment program is the most important variable in
stemming the spread
of the HIV.

178

 

 
 

 

I

| What will make the difference however is the content
of the treatment and how effectively it impacts the lives of the
clients involved. Are we giving rhetoric and not real guidance
and support that will lead to attitude change followed by
behavior change where necessary for the health and well being of
the participants is a good question.

Much attention is given to the warning not to share
needles or accompanying injection items, as well as to that of >
not using any drugs or alcohol. What is crucial here is that
transmission of the virus through injection paraphernalia may
well be the initial process, however sexual contact assumes the
role of primary facilitator for spread of the virus. .

Therefore, we must realistically address sexual
activities and expression as they relate to HIV transmission.
We must make the sexual jargon we so freely offer, "safer sex
or risk reduction sex" a reality. We must ask ourselves what
we mean by "safer sex." Are we willing to be realistic and
non-judgmental .in our offerings towards that end?’

Once we can answer those questions in the affirmative,
we can go on to establish sex education as a key component in our
education programs beginning with an in depth lesson in the
anatomy and physiology of sex. Informal research among program =
participants has revealed this is very much needed before "safer
sex" can be accepted activities worthy of pursuit by our clients.

The education process must'be creative, imaginative ‘and:
people oriented. We don’t need more pamphlets, we neéd more
trained people. HIV infection and AIDS prevention must: be’
person-to-person oriented. | We. see critical change in attitudes,
followed by change in behavior when participants in treatment -
programs are approached and consistently worked with ona ::. ».
one-to-one basis. : ne ds

Funding ‘to provide for special counseling services such
as sex therapists, couple counseling and jcounseling addressing
women’s issues and issues that:are germane to the men in the
programs are necessary. vt

We cannot afford to be tunneled in our vision, but
rather we must be all encompassing in our treatment thrusts. We
must understand that addicts are socialized with the same cs
beliefs, values, needs and wants as are those of us who are not
of "“addictdom" which Dr. Primm so timely calls, "the kingdom of
addicts." c

The only walls that separate us from them are those
that have made mazes of our minds and our hearts, those that we
as individuals have built.

179

 

 
 

 

Substance abuse treatment programs should be funded to
offer HIV testing for those clients who wish such service.
Testing should be made an available component of the counseling
process.

Such service could well be an effective part of
prevention if provided on site where daily supportive counseling
and comprehensive medical care are available. The testing
process requires much more consistent and in depth counseling
prior to the advent of testing and depending on the results, post
test counseling and support may have to be provided ad infinitum.

Such services are more effectively provided ina
program setting than in a free standing anonymous testing site
that provides referrals for such services after the test and
results have been given to the testee.

Before I go on, here I want to make two comments. I
talk about anonymous testing sites, I do not in any way wish you
to believe that if we were to provide testing in our clinics that
it would not be anonymous.

That is a very important issue with us and we are very
much aware of the need for confidentiality and we have done
minimal testing among our clients as part of a research project
that is going on in Baltimore, Maryland and I think that we have
been very successful in keeping the results very confidential and
as a consequence, many more clients have come to us requesting
testing because they are aware of the people who have been tested
who have shared with them themselves their results and they are
now more willing to be tested. So I think it is a key issue.

Also with regard to the testing sites, one of the |

things that we have found in New York is that while clients who
go to these anonymous testing sites are gung-ho to be tested,
very few of them go back for their results and that has to do
with the fear of the results but also it is a very frightening
process to go to a testing site by yourself and get results and
then leave by yourself especially after someone says to you, "It
does not mean that you will get AIDS and you can live a long time
and if you have any problems, here is a counselling referral
center or person that you can call."

So that is why it is very key for us to provide this
service on site. .

Finally, treatment programs should be funded to work
with the sex partners of their clients. Often a client will
request that counseling as well as medical care be provided his
or her spouse who is not a client in the program and who may not
be an IVDA.

180

 

 
 

The process of encouraging attitude and behavior change
that impacts on an individual who is a part of a relationship
must involve each of the two or more persons in that
relationship.

The chances of success are certainly enhanced if such
services are provided. Often a client needs support as he or she
introduces new and different strategies for change or adjustments
in their old activities and beliefs.

Finally, there are very special issues experienced by
men and women separately with regard to HIV infection and AIDS
prevention. Many of them are based on the way men and women have
been socialized and thus the way power prevails in their
relationships.

The rules and expectations assigned to men and women
are in many instances not conducive to effective attitude, belief
and finally behavior change unless these as well as other issues
are addressed.

We must not forget that HIV infection prevention is
politics, sex, medicine, economics, public health policy,
religion, law enforcement, newspapers, radio, movies, television
and music. But above all, it is loving and caring about those
who are our partners and loving and caring about those of others.
AIDS prevention will take all of us or AIDS will continue to
Claim the lives of many of us. Thank you.

DR. PRIMM: Thank you, Ms. Gibson. I have a few
questions that certainly I would like to begin with. First, I
would like to commend the panel on their candid presentation
about the problem of transmission through, of course, sexual
intercourse. I think you have been candid, you have been open
and certainly terribly explicit and for me, it has been also an
education. So I want to thank you for that from the outset and
commend you.

Mr. Jones, you talked about drugs diminishing libido
and that in your experience that a number with whom you deal at
the clinic do not have any sexual drive at all and when they do,
it is more fantasy than reality. Can you talk about that just
for a moment?

MR. JONES: I am not comfortable in making that a
blanket statement but the reason that I even raised that issue is
that if you are working with addicts and you are placing all of
your emphasis on safe sex, you may be missing the boat and what
we have learned with our outreach workers is that to hear what
the individual is saying so when they are rejecting your safe sex
message, there may be some legitimate reason for that.

181

 

 
 

 

When the guy says, "I haven’t had sex in a couple of
years," if they feel comfortable enough to say that, then what we
have learned is that the real message that we need to get across
to them then is focusing on the issue of the IV drug use and then
talking about not sharing works or if they are not in treatment
programs, how to clean their works and focus in on that
particular emphasis.

Now on the other hand, we have a comprehensive program
where we are not only working with these persons on the streets
but we also work with them in detox programs and short term and
long term drug programs and in the prison settings, jail
settings, and the VD/STD clinic.

Once they start to detox or go into a drug treatment
program, one of the things that begins to happen is that they
start getting in touch with their sexuality and start really
thinking about relationships and what we have found is that
when they are in jail and going through detox or a drug treatment
program, then it makes sense to put more emphasis or start
picking up the focus and addressing the issues of sexuality.

So it is knowing where the person is and what their
atmosphere is as to where you are placing what emphasis on what
as opposed to spinning your wheels and wasting time.

DR. PRIMM: There was a common thread that went through
I thought each one of your testimonies and that thread was that
there ought to be massive sex education, and particularly,
certain groups should be targeted more than others. And we’re
talking about intravenous drug abusers and their sex partners,
and particularly in the Black and Hispanic communities. Would
any of you comment on what you think that sex education ought to
be in drug treatment programs; how do you feel it could reach out
to be inclusive of sexual partners of IV drug abusers who are not
necessarily welcomed in the clinic because of the confidentiality
of the clinics. We don’t generally treat the sexual partner
unless the sexual partner is an IV drug user themselves, and it
makes it difficult for us to reach out to people like that.

So any one of you, if you’d like, could begin to talk
about that. I’d like to hear from all of you if possible.

MS. GIBSON: If I may, I recognize that it is a problem
with regard to confidentiality to bring partners into drug
treatment programs. What I’m finding as an interesting
phenomenon is that a good number of the clients in our programs
are asking for their partners to come in. Of course, that might
present a problem for the other clients who may or may not want
someone in the community to know that they’re a part of the
progran.

182

 

 
 

 

One of the things that we had talked about in one of
our programs was the possibility of keeping one or two of our
clinics open later so that we could have time set aside for just
that kind of counseling, with the clients and their sex partners
because it is a question that’s being raised. So I think we
could do that.

of course, if we had the money and the space we could
have a place offsite that could be set up for just that reason,
but because we’re working within such tight financial
constraints, we have thought about setting aside post clinic
service for that.

I’d like to comment on one other thing regarding sex
and addicts. We’re finding out that we are getting a fair number
of younger addicted people in our clinics, mostly males. I
find that their sex questions are very different from those of
the older males who, at times, do report that they don’t think
of sex very much or they haven’t had sex in a while.

. In one of the education sessions that I had about a
month ago, one of the younger men in the class asked me if it
was safe to get head, when I told him not really he said, "Oh,
shit," because he thought that was like the safest thing he
could do, was at least have oral sex. What I shared with him
was the use of condoms. Of course the big question is how can
you get the virus without having penetration sex. The answer
has to do with explaining an opening on the penis or an opening
on the head of the penis and maybe not even knowing that there
is such an opening or there’s been a scratch or a mild cut. And
then explain how that can occur.

Also, explaining to people who are not infected and are
having oral sex with someone who is, something as simple as not
flossing before you think you’re going to participate in sex so
that you don’t take the chance of gutting a gum. These are very
basic questions that our clients ask on a daily basis.

When we talk about safer sex, one of the things that
those of us have the luxury of discussing is exploring the body,
recognizing that there are many ways of being sexual and many
ways of enjoying sexual activity. But for most of our clients,
the only areas that they ever think about when they think about
sex is the vagina and the penis; you just don’t expect that
there’s any other part of the body that has anything to do with
sexual pleasure.

The other thing that we’re finding out is that even
with regard to the vagina and the penis, there is the anatomy of
the vagina and the anatomy of the penis that most of our clients
are not aware of at all. So you’ve got to get to that kind of

183

 

 
 

 

basic information before you can begin to talk about alternative
ways to enjoy sex.

The other issue is that it takes a long time for them
to begin to talk about sex because it’s just uncomfortable, and
I don’t think it means that they are not participating in sex;
it just means how do I begin to ask the question; I don’t want
to seem like a dummy; I don’t want to seem like I don’t know,
because in our society everybody knows everything there is to
know about sex. And if you don’t, you just don’t dare share it
with anybody. So it takes time to create an environment in which
we can begin to talk about that kind of thing.

I remember an education course that Dr. Primm conducted
at one of our clinics when one of the guys wanted to know if you
can catch gonorrhea through sex without - well, they asked, what
about the hole; can’t the virus go through that hole. And it was
just a very good question. I have been in forums where the
question has been raised over and over again. And so it took
sort of dissecting the penis very gently on the board so that no
one would experience any kind of mental pain, and then Dr. Primm
showing, the process of somebody maybe catching gonorrhea and not
the virus, entering that way. So these are the kinds of really
basic things that I’m finding to be very necessary in dealing
with the clients that I am working with.

I’ve got clients who are infected who have partners who
are not IVDA’s who are grappling with how to deal with them on a
sexual basis. I have one client who says to me that he has been
abstinent for two months because he can’t bring himself to use a
condom because he doesn’t want her to ask him why is he using a
condom, and she knows that he’s on a program. He has sex with
somebody else and he uses the condom with that person because she
is an addict and she understands that condoms ought to be used.
So it’s those kinds of issues that become very touchy.

Also, I have lesbian women who are infected and who
want to know how they can have sex with their partner who is not
infected, and that becomes very creative. That’s what I mean
when I say that we’ve got to be creative about that. You have to
get very anatomical about it but you also have to become very
creative because people do want to express sex, and these women
do want to express sex and they want to know how do TI best do it.
Thank you for letting me take so much time.

DR. PRIMM: It seems as if you might be suggesting
indirectly that there be some contact tracing and testing
available as you talk about contacting sexual partners of IVDA.
Though you didn’t say that, that certainly is what it seems like
when we hear you. Mr. Jones? Dr. Wofsy?

184

 

 
 

 

_. MR. JONES: In terms of reaching partners, I had a
couple of comments. -.One of my recommendations was the need to
really look at legislation that does not acknowledge certain
relationships; specifically gay coupling and lesbian coupling.
If you have these IV drug users in treatment programs and
they’re dealing with their addiction but they haven’t felt
comfortable enough to raise the issue of their sexual orientation
and in the laws and legislation there is a stigma. It makes it
virtually impossible to reach their partners. And often, they
are put into situations where their relationships are not
acknowledged; it’s not acknowledged as a legitimate
relationship, and those are barriers.

Also, many IV drug users that are on the streets are
in long-term relationships but are not married. They may be
common-law married, but they see that as a marriage. They’ve
been through thick and thin with each other, and sometimes our
program does not acknowledge that as a legitimate relationship.
And yet for those persons, for whatever reason, they may not have
done the bonding in terms of legitimacy but they are married. So
needing to watch these programs and talk about reaching wives and
making sure we’re inclusive enough to include significant others.

\

Many of these people, even though they’re' having sex
with each other, they’re not talking about sex, and it’s like |
trying to get them together for the first time to talk. They’re
embarrassed, they’re shy, they’ve never talked to their parents
about sex. This youngster gets pregnant and the mother says,
how did that happen? When did this take place? :

The real issue -- we’re finding it difficult to get to
significant others -- is putting more emphasis on trying to reach.
parents. We found in our area that racial minorities seem to
become sexually active at a much younger age than what we
perceived. We have 12 and 11-year old girls getting pregnant;
kids having kids. So what is too soon? When do you start
talking about these things?

We’re also acknowledging that if you’re discussing
poverty levels, people that don’t have a lot of disposable
income, sex may be the only affordable recreational activity they
can have. We’ve gone through an era where we had a lot of kids
because when the lights went out that was the only recreation,
but that is still a reality for a lot of people that can’t afford
bowling alleys and private clubs and the fees you pay for
gymnasium and basketball courts. There aren’t that many
facilities available anyway; you have to wait or get into a
fight to do that. Sex sometimes is the only recreation we have.

We are running into men who are hustling in one area
and their girlfriends are prostituting in another area. They’re
not married, but those are relationships. So we have to

185

 

 

 
 

 

acknowledge that; they are denying it, not telling their
girlfriends what they’re doing but those relationships are there.
How do we reach them? By going into the area where these people
are in their particular turf and assuming nothing but listening
to them and then talking with them where they are.

DR. PRIMM: I have hands going up over here and hands
going up over there and I’m caught between a rock and a hard
place, so if you will shorten your responses it would be much
better for me. Dr. Wofsy?

DR. WOFSY: I will make a very brief response and that
is to distinguish between people who already have developed their
hhabits -- IV drugs or sex -- and those who are at risk for newly
developing them; i.e., young people. And the kind of programs
may be similar but also different because for young people, they
are still in a place where they can be reached, which is schools.
Not maybe if they have gotten to be 16, but at an earlier age.

So one is to target and just get over this non sex education
business and move it into the schools in a way that’s explicit
and with a lot of time for those who haven’t started their
habits. For those who have started habits there are no magic
answers. Contact tracing is something that perhaps Dr. Padian
is better equipped to talk about than anyone else here.

DR. PADIAN: I did have a brief comment about contact
tracing. I think it’s important to define what we mean by
contact tracing when we’re talking about it, because for some
people I think it connotes a situation where we bring in an
infected person, extract identifying information from that person
and then try and track down their partner. I think that’s
probably not appropriate to do here; I think what you want to do
is the kind of situation that Mr. Jones described where you use
it as a forum to begin talking about sex, and in that sense to
the best that you can, make it more a partner referral where you
involve the infected person in the process of contacting their
partner and not simply extracting identifying information.

Also, another point to keep in mind is that we’ve all
mentioned here that people have changed their behavior as a
result of knowing their serostatus. Well keep in mind that ina
research study we’re offering an incredible amount of counseling,
we're offering a lot of one-to-one, a lot of education, and so I
think oftentimes it’s very difficult to separate out what is
causing the person to change their behavior.

It’s probably not the test in and of itself, and so
that kind of tracing partner referral I think can only work with
guarantees of confidentiality that are legislated and good
counseling/education program that are ongoing. You simply can’t
contact someone, let them know that they have been exposed and
then expect things to happen.

186

 

 

 

 
 

DR: PRIMM: Dr. Crenshaw?

DR. CRENSHAW: I want to compliment you on the
perception of the importance of being involved in an
understanding of your patient’s sex life, for a whole variety
of reasons. I wanted to mention as well a feature that I have
not heard brought up very often, there are studies available
today about ordinary sexual arousal resulting in relative degrees
of immunity to pain. It’s thought to be a serum endorphin
response that occurs with sexual arousal. And that means that if
you counsel your subjects and you help them to appreciate that
they may hurt after sex and not during, where there could be
mucous membrane injury this becomes very significant when
associated with the wide recommendation of spermicides today
because they cause transient anesthesia. If they get in the
mouth, the throat gets numb, vagina and so forth. So it’s
prevention. s.

Now, Ms. Gibson, you brought up a really interesting _
point that I’d appreciate your elaborating on that ties into ~~
Dr. Padian’s last comment. You indicated, if I understood-fou
correctly, that very often the IV drug abuser is reluctant to
tell their steady sexual partner that they’re infected because
that’s their source of support -- if they know they’re infected.
And that this is a particularly tricky obstacle to overcome. And
in context with that, I hear more commonly the comment I heard
from Mr. Jones that you just can’t test; it devastates them, it
makes them want to go commit suicide and they don’t have time to
adapt. You have a different solution for that and find that
testing can be built into the program in a productive way.

MS. GIBSON: I think that probably for some. There are
some of our clients who have gotten their results and who have
been devastated for a period.

One of the things that I have asked Dr. Brown in our
Research Department to do is to create some kind of brief study
that can follow people through a period of time after getting
results of an antibody positive status to see just what happens.
What we can provide is being there for the client and talking
about the fact that an HIV infection does not necessarily mean
that you’re going to go on to develop one of the opportunistic
infections, and that there is life after a positive status, which
I think is very, very important.

I think that we have to have that attitude. The way we
are dealing with AIDS, no matter how open we are there’s always
an element of fear that comes through and we are afraid that if
we are infected we’re going to die. We’re talking about |
confidentiality because we know of the societal pressure that
comes if somebody knows of someone’s status. So there’s a lot of

187

 

 
 

 

work. But with our clients, we just have to be there for then.
And I’m finding out that while there are some who panic and who
might leave, we are now going out and trying to find them to
bring them back. But there are a number of them who stay and
who come every day and who want the support and who want the
counseling.

One of the reasons I talked about almost one-to-one
counseling, which is very difficult for us to do, is that I have
seen women who are positive and in some cases who are beginning
to get sick, who are just living the most productive lives that
you ever want to see. Taking care of themselves, they’ve
changed their behavior, they’re cleaning, they’re dressing,
they’re coming to the clinic, they’re doing volunteer work, they
want to help somebody else through this, and that comes with
Support but it takes a lot of person-to- person support.

When you talk about reasons that people want to or
don’t want to share their status, with women a lot of the women
in our clinic are very dependent on males for financial support.
But we cannot forget that some of them are dependent on the men
just for emotional support, and that’s what is key. And they’re
not any different from the women in society that we know. We’ve
got to look at what hooks males and females, because that’s
essential in talking about AIDS education. The whole idea of
women who will forego forcing use of a condom because for that
two minutes or five or 10 minutes, if they’re lucky to have sex
that long, that is the most important thing that might happen to
them for that whole week, if they only have sex once a week.
Because at that moment, they’re being held or touched or told
that they’re fine or told that they’re good.

The interesting thing about sex is that we give up a
lot for those moments. It’s almost as if we’re not going to
have them again. And the men are not going to give up the
information because they don’t want to be ostracized. But I
guarantee you that men will not be as ostracized by women when
infected as women are by men. Again, we’re looking at a general
societal belief system that prevails even in a subculture like
addiction. We are responding to the same system, so that the men
aren’t going to let them know first of all because they may not
value them enough to let them know. But more than that, they
can’t risk their image.

So these are the things that we have to work with when
we talk about telling somebody your status. You know.

DR. PRIMM: Ms. Gibson, I’m going to have to invite
you back.

{[Laughter. ]

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DR. CRENSHAW: I agree. Those are very profound
points, and I particularly thought it was sensible when you
mentioned that the risk of someone reacting negatively to HIV
testing in an anonymous center where they didn’t have the
contacts to counseling to bolster them was greater than in the
setting of therapy that you do now. That’s important.

MR. JONES: I do want to emphasize the real concern
that I have that I’m seeing more and more institutionalized
settings testing individuals, particularly IV drug users. They
come in, they’re recognized as an IV drug user and they don’t do
what I would consider appropriate pre-test counseling. They
basically coerce them into testing, or they will couch what
they’re doing -- sometimes they won’t say I’m going to do the
AIDS antibody testing, I’m going to do a series of viral tests,
whatever. And then they don’t do post-test counseling; they
simply give them the results. And that’s what is devastating.

What we need are pre/post test training and counseling
programs that these substance abuse counselors and correctional
officers and whoever is going to be doing the testing and giving
the results in institutionalized settings take the time and have
the skills to do the pretest-counseling. And that’s not just
saying I’m going to do a test and the post-counseling is not just
giving the results. If their staff are not trained to do that,
they should not be doing the testing. It’s just that simple.

The model that some drug programs follow is not set up to do
testing.

DR. PRIMM: I think if we follow the premise that
testing is an adjunct to counseling, we are much better off. And
certainly, Mr. Jones, you talked about pre-test counseling and
post-test counseling. I’d like for you to include, if you would,
and take a page out of the book of my corporation, we also have
ongoing counseling while people are awaiting the test results,
and I think that’s really important. So pre and during that
period when they’re waiting and then post. Dr. Walsh.

DR. WALSH: I am neither a moralist nor am I naive but
I am troubled a little bit by what I’ve heard this morning, and I
hope that I’m wrong and I want you to clarify it for me.

It seems to me that to gain the confidence of the
people whom you described this morning -- the prostitute
population, the IV drug users and so on -- that you almost feel
you must condone their behavior, almost more than condone it;
almost approve it. For example, you elevated, legitimized
prostitution by calling it a sex industry, and you like that
elevation.

I was just wondering that in the research that you
do -- I recognize you have to gain their confidence, there’s no

189

 

 
 

 

question about that, but I haven’t heard a Single comment from
any of you on whether you ever counsel that if they are infected,
no sex is better than even protected sex or so- called safer

sex. I think that there’s room for compassion for the ill, we
want that, but I’m concerned about the public health of those who
are not yet ill. And I wonder whether if counselors take the
advice, for example, of researchers like yourselves and the
comments you have made, whether you aren’t encouraging a belief
that even though you’re infected you can still go on living and
doing what you want to do, but that you owe it to your fellow man
to take some precautions. Yet you must know certainly better
than I that no matter how much counseling or advice you give an
IV drug user, if he is not in possession of all of his faculties
during intercourse, his chances of using the condom, number one,
are limited; using it properly are more limited; and the same can
be said for a female drug user and so on.

I was very graphically impressed, for example, Ms.
Gibson, by your comment of the prostitute who said it was the
john’s responsibility, as if that would protect her somehow.
There’s some bizarre reasoning there. I’m troubled by the fact
that you have not given us any of what you may tell them other
than what we have heard, because, I think it would be very
strange for this commission to make recommendations along the
lines that you have described as a formal part of a Commission
report. I think it would be appalling.

DR. PRIMM: Dr. Padian and Dr. Wofsy, whoever wants to
go first.

DR. WOFSY: I hear the comments you are making and I
think that it is important to say that at least in our experience
with our discussions, there is always a sense of hierarchical
ranking of the safest for you and the safest for others, and that
always starts with not doing whatever that activity is. I think
one of the reasons we have all -- I’1ll speak for myself and my
supposition for the others -- become so graphic is that sex and
IV drug use are both habits. They’re like having what you eat in
the morning for breakfast; they’re like whether you buckle your
seat belt; they are habits. And once you recognize that total |
avoidance for absolute safety of whatever the habit is, isn’t, i: |
going to happen or that the devastation of that person’s life is
such that avoidance will lead to some heinous act, then you have
to deal with okay, I don’t have to approve of it; I just want to
make it the safest for this person’s health as a one-on-one
counselor, and for!the other person or persons, with the public
health hat on. And if they can’t abstain from IV drug use, if a
treatment program isn’t available or they refuse to go in, the
next is don’t share -- do it to yourself alone. And if you
share, how can you make it safest.

190

 

 
 

 

I agree that in my comments and those that I’ve heard,
it sort of bypasses the cascade because the reality is that if
one insists on the greater abstinence part of the hierarchy of
the cascade, the likelihood is the person will be lost, and in
the end more will be put at risk for infection.

DR. WALSH: But what kind of response do you get?
Any response at all, when you suggest to them that they are
endangering the lives of others if they indulge their pleasures?
I mean, I’m curious to know if you get any response whatsoever.
I think you touched on it a little bit, but I just haven’t heard
it.

DR. PRIMM: I heard something from one of the panelists
that talked about abstinence as a response to seropositivity.
Dr. Padian, I don’t know whether I heard that from you?

DR. PADIAN: Yes, that was my comment.
DR. PRIMM: Was that your’s also, Dr. Wofsy?

DR. WOFSY: Yes. I would just like to add to that that
we have one woman who abstains because she knows she is positive,
she has insisted, demanded, pleaded, had us help with counselling
of the partner for him to wear a condom and use non-oxynol 9 to
maximize their mutual safety. He will not have sex with a condom
and she has said, "Then we do not have sex."

In our experience, it is almost exclusively the male
who with counselling often with the help of our research staff
and counsellors cannot or will not wear the condom and the woman
in general, granted our study is of women so it doesn’t represent
a cross-section, the woman in general is better educated and
attempts.

DR. WALSH: Do you feel in'any sense, for example, that
in Nevada where they punish the female prostitute because it is a
legal profession there if she is seropositive and carries on her
activities, do you feel in any way that a seropositive IV drug
user or a seropositive female prostitute should in any way be
prevented from carrying on or should be penalized. As you say,
you can probably tell me many more examples like you just told
me which have to be terribly frustrating to those of you who are
trying to help them.

DR. WOFSY: Right.

DR. WALSH: Will a penalty stop this?

DR. WOFSY: I think any person who repeatedly and
indiscriminately exposes others needs a very, very rigorous

series of counselling and opportunities or options to do

191

 

 
 

 

something different than that illegal act. The corollary to that
which hasn’t come up is the johns. Not the issue of it is then /
or it is her, but that information about sexuality with people
who are unknown to you

is just foolish and if it is going to be, it should be safe, a

hand job or with the maximal safety.

I know there are a lot of places, corporations and
business places and networks, that could get out that kind of
information so that there are two sides working with it. Leaders
of prostitute organizations make a statement that everyone has a
moral responsibility to other people in the population.

MR. JONES: Just quickly, you need to acknowledge that
we were asked to come to talk about IV drug abusers which means
in my judgment, we are talking more about intervention as
opposed to prevention. It is like talking to youth. There is a
level that it makes sense to say, "Just Say No" and how far does_
that make any sense.

Now if you are talking about people who are engaged in
commercialized sex, we call it here in D.C., same thing, and this
is their livelihood and you are not talking about alternatives
for their livelihood and their survival, then you need to talk
about safe sex. So, yes, abstention is an option and I think
there are certain groups of people that need to take that and
we emphasize that it all has to be done.

DR. WALSH: But the criminal who is a housebreaker,
that is his livelihood, too, same thing.

DR. PRIMM: Ms. Gibson, we are running a little bit
over time and I need a comment from Dr. Lilly and Dr. SerVaas has
a question and hopefully, we can do that within the next three
minutes so I can dismiss the panel.

DR. LILLY: I really just want to make a very brief
comment. I am extremely impressed at the extent to which you
have taught us the importance of counselling. We have heard that
before but you have given us examples of it and I think that to
me has been the great message of the morning, that if we want to
succeed with testing as a measure for prevention, it will be
virtually useless without counselling and not just a ten minute
lecture but something that is ongoing, something that people have
access to readily and I thank you for that message.

DR. PRIMM: Thank you, Dr. Lilly. Dr. ServVaas.

DR. SERVAAS:. I was touched, Ms. Gibson, when you said
the person comes to the counsellor alone and is told by the
counsellor he or she is antibody positive for AIDS. I believe
that every person who is antibody positive should have access to

192

 

 
a physician at that point and is this totally impossible in your
program? You do not have enough physicians to counsel a person?

MS. GIBSON: No. As a matter of fact, in my
presentation, the two services that I mentioned were counselling
and medical care where medical care is available. If I had the
opportunity to have volunteer testing in my clinic, I am sure
that on the heels of that I would have to not only increase my
counselling staff but my medical staff.

I think that medicine plays a very important role in
counselling, in the whole treatment of HIV infection and AIDS.
So indeed we would have to probably bring on extra help in both
those areas. At this point, I would like to try it with what I
have but probably I would have to bring on more.

DR. PRIMM: The Commission feels, Ms. Gibson, that
anonymity is one of the real hallmarks of any testing. I have
been requested by the Chairman to ask you to provide for the
Commission reports from the Addiction Research Center and the
ARTC Joint Study with Lang, Jaffe, Primm and Brown to see just
what was involved that made our study such that people believed
in the anonymous nature of the reports and so forth.

MS. GIBSON: Sure.
DR. PRIMM: So I would like for that to come from you.
MS. GIBSON: All right.

DR. PRIMM: Mr. Jones and Dr. Wofsy, we would love to
have your written testimony. That was not given to us. Your
verbal presentation was wonderful but we need a copy of that
presentation. We would love to have it. Your panel has been
very, very, productive. We have had some very interesting
provocative and kinds of responses and questions and I want to
thank you very much and we will be in touch with you certainly
after this. So if we could, I would like to now call the next
panel. Thank you so very, very much.

I would like to welcome our next panel on Modes of
Transmission, Perinatal Transmission, Dr. Finnegan, Dr. Heagarty
and Dr. Minkoff.

We are so glad to have you and as you know how close I
feel to all of you and we have worked together so much. I feel
like standing up whenever I see you, Dr. Finnegan and Dr.
Heagarty, to just say how much I appreciate all the work that you
have done in this field. Dr. Minkoff, you know how we feel and
my corporation is certainly cooperating with you on many
efforts. Our first presenter is Dr. Finnegan.

193

 

 
 

 

MODES OF TRANSMISSION/PERINATAL TRANSMISSION

DR. FINNEGAN: I am pleased to have this opportunity to
address the Presidential Commission on the HIV Epidemic with
regard to perinatally transmitted AIDS. I presently hold the
position of Professor of Pediatrics and Professor of Psychiatry
and Human Behavior at Jefferson Medical College of Thomas
Jefferson University in Philadelphia.

In addition, I am Director of the Family Center which
is a program designed to provide intensive medical and
psychosocial services to drug and alcohol dependent women, in
general, and to provide specialized care to those who are
pregnant.

Over the last 17 years of operation within the service
and research goals of the program, we have found that we can
rehabilitate a significant number of women who have come to us
during pregnancy. Moreover, we have been able to reduce the
incidence of low birth weight infants from nearly 50 percent to
18 percent.

Unfortunately, these women, who are already weakened by
unemployment, illiteracy, homelessness, crime and other diseases,
including their alcoholism and drug addiction, are now those at
risk for the Human Immunodeficiency Virus.

The risk factors for HIV infection in drug users
include geographic location, the sharing of needles, the use of
shooting galleries, the lack of cleaning or disinfection of
works, the use of IV cocaine and sexual transmission risk factors
which include prostitution, the non-use of condoms and high risk
sexual practices.

Suggested methods to prevent and treat this epidemic
include: effective behavior modification, education, vaccination,
antiviral therapy, immune modification, identification and
elimination of co-factors, treatment of opportunistic infections
and the screening of blood donors.

Unfortunately, within the population of intravenous
drug abusers, some of these issues have not been well addressed.

We could potentially eliminate the disease in innocent
children if services for their mothers were provided prenatally
and if education was appropriately defined for them but there are
a multitude of barriers to the effective prevention, intervention
and treatment of mothers and children at risk for AIDS.

From my nearly two decades of experience with this very
high risk and needy population of mothers and infants, certain
recommendations are appropriate.

194

 

 
 

|

| ” First and utmost, there is an urgent need to expand
the availability of methadone to intravenous drug abusers coupled
with comprehensive treatment for the pregnant drug dependent

woman as well as postpartum women on drugs.

| Appropriate surveillance within programs treating
these women is essential is order to monitor them and to give .
them appropriate public health advice. The follow up of all
pregnancies within this population is essential due to the nature
of the disease that may not be evident during the perinatal
period but which may be manifested within several years after
the birth of the child.

Moreover, the issue of abandonment of the children and
foster care needs must be addressed and planned appropriately.

Furthermore, although ‘hospitals who receive
governmental funding should not be permitted to discriminate
against AIDS patients, it is clear that these hospitals will not
be able to cope in the near future with regard to having enough
hospital beds as well as the resources for acute care.

Therefore, government must consider establishing large
hospitals dedicated to the treatment of AIDS. Such hospitals
would be able to develop a very skilled staff with a
concentration of proper expertise in the latest advances in the
management and research of AIDS.

Moreover, having appropriate long term care facilities.
would provide efficient care, without the tremendous hospital
costs that many acute hospitals currently encounter. Therefore,
we must develop a flexible system for extended out of hospital
care.

We should consider the ability to treat many of the
patients at home with the assistance of visiting nurses and
individuals who can deal with the many psychosocial aspects of
AIDS. Home health care is a key service in an effort to provide
effective and cost efficient care to the people with AIDS.

Numerous psychosocial issues emerge when the woman is
advised that she is HIV positive. She will be aware of the fact
that she and her newborn potentially have a low survival rate.
This may limit the amount of emotional energy that she has to

expend with regard to dealing with her pregnancy.

She may not be able to complete the emotional tasks
of the pregnancy and may have mixed feelings about delivering
an infant that might be infected with this mysterious and
debilitating disease syndrome.

195

 

 
 

 

Her will to live may also be affected and she may
become depressed. In many instances, the spouse and other
children of the woman also have AIDS so she must consider who
will care for her children if she dies first.

Options for either interruption of the pregnancy or
methodologies for the prevention of future pregnancies must be
part of the counseling for the unfortunate women.

From the standpoint of education, the tools that we
currently have are sadly inadequate. There is a need for more
explicit and descriptive methods to teach these women through
creative tools other than traditional methods of didactic
teaching or reading material.

The reading material that is currently available,
particularly the type printed by agencies of the United States
Government, are often beyond the comprehension of the drug
dependent mother. The literature lacks graphic visuals which
have proved to be effective in changing sexual behavior.

Though lacking education and developmentally immature,
this audience is accustomed to the sophisticated marketing
techniques used by the media today. I would recommend high
quality, professionally produced videos which explicitly
illustrate safe sex practices for the heterosexual male and
female population. We must speak to these women at their level.

It is our challenge as leaders, educators and health
care professionals to employ creativity and candor in our efforts
to help this population modify their behavior. One primary cause
of widespread drug addiction outside of the white middle class is
years of insensitivity to cultural differences with regard to
effective education for a culturally diversified audience. We
must not make the same mistake when it comes to AIDS education.

From the standpoint of research, little is known of the
many factors involved in the natural history of the disease in
the perinatal period. In spite of this, the government continues
to do research in an extremely inefficient and unproductive way
by using the traditional system of peer review with individual
grants to specific institutions.

Efficiency and rapidity in the collection of this
information is essential. We cannot wait for years and years to
obtain this information. We must develop a common protocol and
provide monies for research and treatment to key areas throughout
our country where programs for pregnant drug dependent women are
in existence and where research capabilities have already been
established such as those in San Francisco, Chicago, Detroit,

New York, Pittsburgh and Philadelphia.

_ 196

 

 
 

 

The precedent for this has already been established
if one looks in.the May 23, 1987 issue of The Lancet where
projects developed within the European Communities, including
universities in Great Britain, Italy and West Germany, are
beginning to collect information concerning the effects of
seropositivity in pregnant women and the outcome of their
offspring.

I want to underline for the Commission today, the
debilitating nature and long range intergenerational effects of
chronic drug addiction. It is even more devastating to drug
dependent women and mothers who so frequently do not have the
resources for recovery available to then.

Because of the lack of treatment services and research
endeavors within the drug addicted population for so many years,
we are now plagued with rampant drug addiction in this country.
Because of the intergenerational transmission of the disease of
addiction, as a country, we have fostered a spiraling legacy of
addicts giving™birth to addicts.

This~dark reality has now developed into the fact that
soon we will have many thousands of babies at our doorstep who
are dying of AIDS. If but only ten percent of the resources for
treatment and research provided for such diseases as cancer,
heart disease and stroke had been applied to this population
several decades ago, we would not have the overwhelming problem
of rampant addiction, producing the concomitant tragedy of babies
with AIDS.

We are now confronted with the HIV epidemic, but we
have had a drug abuse epidemic for a quarter of a century and
we haven’t done anything effective about it due to the lack of
funding. Will we permit the AIDS epidemic to reach
uncontrollable heights? Must this generation and future
generations suffer due to our unwillingness to act with urgency?
We must make a sincere commitment that turns the course of this
human tragedy. Thank you.

DR. PRIMM: Thank you so much, Dr. Finnegan.
Dr. Heagarty?

DR. HEAGARTY: On Monday evening a child died in
Harlem. This is the occasion and you are the appropriate people
to whom to deliver an eulogy for this three year old child, for
perhaps you can help me and my staff mourn this death. And

maybe, just maybe, you can help give this death some meaning,
perhaps in death this child can help other children.

The child was admitted to the pediatric service of
Harlem Hospital almost two years ago. The family had been burned
out of their apartment and this child with several brothers and

197

 

 
 

 

Sisters had to be placed in foster care, but the welfare worker
had trouble finding a foster home, so the infant had spent
several days in her office while she searched for a placement.
Finally in desperation, she appeared one night in our emergency
room with the baby.

One of my pediatricians admitted the child against all
regulatory rules with a sort of made up diagnosis of viral
infection, out of pity for the child and@ the social worker.

Aside from a mild cold and slight wheezing, the 9-month
old infant appeared healthy. But because the mother was known to
be an intravenous drug user and because the child had a peculiar
face, within the first few weeks of hospitalization, we got
permission from the parents to test their child for the presence
of the HIV antibody. Unfortunately, the test was positive.

At that point, since the infant appeared perfectly
healthy, developing and growing normally, we assumed or perhaps
more accurately hoped, that this test simply reflected the
mother’s antibody status rather than HIV infection in the child.

But the minute we knew about the positive antibody
test, we also knew that this child was destined to remain on our
wards for an extended period of time. The mother was an
intravenous drug user who very well may have the disease herself
and the father was an alcoholic. The parents ended up in a
welfare hotel in Brooklyn, could not find housing and were not
able to reorganize their lives enough to reunite their family or
to care for the child. Despite their very real limitations and
personal tragedies, they tried in their own way to love and
support the child. So let me be clear, I and my staff do not
judge these parents nor do we condemn them nor May you.

Even two years ago, we recognized that New York City’s
foster care system was at a breaking point. We were also
beginning to understand that few foster parents were willing or
able to take a child who might be infected with the virus.

Indeed, in the past two years, between 15 and 20 of the
60 or 70 children we have cared for have spent most of their
lives on our wards. Some like this child, have lived and died in
my department, only four have been placed in foster homes and
when I left yesterday, there were four long term children on the
ward. For you see, we as a community do not seem to have the
will to find humane solutions for children displaced by this
virus.

So for the past two years, this child has lived at the
Harlem Hospital on the 17th floor. About a year ago, the nurses
began to report that the child was no longer growing and
developing, no longer walked, no longer talked. We realized that

198

 

 
 

 

what we had hoped was a normal, uninfected child, was in fact one
who had the neurological form of AIDS. I and my doctors and
nurses and staff have watched helplessly as this child has
endured a gradual, painful wasting away life that finally,
mercifully, ended on Monday evening.

Now this child and most children with AIDS are to be
found in places like Harlem Hospital, a city hospital. City
hospitals are medical versions of Hill Street Blues. At the best
of times, precariously financed and staffed. AIDS has simply
accentuated the perennial problems of health care for the poor.
Nobody, not Government, not philanthropy, not the church, seems
to have noticed that these children are in city hospitals
throughout this nation, city hospitals that have received little
if any extra support in their effort to care for children with
AIDS.

But this child and the other children for whom we cared
did not and will not die unloved or alone. The nurses, the
doctors, the social workers, the cleaning men, the security
officers, they have become their parents and have come to love
them. On Monday when this little child died, I decided that only
we seem to love or care about them. I left yesterday a sad and
grieving group of people from all parts of my department worrying
and loving them but understanding as well that the children have
given us more than we have given them.

So you see, I felt I had to use this short time to see
if I could get you, with your power and influence, to worry about
them and to love them with us. For on Monday evening as the
child died, all of us on the 17th floor of the Harlem Hospital
felt alone and lost.

I ask you to join us in our concern for these the least
of us.

DR. PRIMM: Thank you very much, Dr. Heagarty.
Dr. Mitchell, we want to welcome you here. I hope you have
had enough time to compose yourself, or else we will allow
Dr. Minkoff to go and then you can go. Would you prefer that?

DR. MITCHELL: Dr. Minkoff may go first.

pr. ‘PRIMM: All right. Dr. Minkoff, please proceed.

DR. MINKOFF: I toyed with throwing away my prepared
remarks and spending the next few minutes just contemplating the
eloquence of the eulogy we just heard, but far be it from an
obstetrician to let a pediatrician have the last word, so I’1ll go
ahead. a"

199

at
t

 

 
 

 

I’d like to thank the members of the Commission for
giving me the opportunity to speak to the issue of drug use and
perinatal AIDS and to offer the perspective of a provider of
women’s health care.

I practice and teach obstetrics in a sentinel community
and have been involved in AIDS research focused on pregnancy for
several years.

I cannot overstate to you, based on these experiences,
the impact that HIV is having on the health of newborns relative
to other infectious diseases with which obstetricians have
traditionally battled.

Two percent of all women delivering at one of the
institutions with which I’m affiliated, Kings County Hospital,
are infected with HIV. I know you are all familiar with that
statistic, as well as the 60 percent seropositivity rate found
among intravenous drug users in New York, which may make 2
percent seem like a low prevalence.

But to put that 2 percent in a proper focus, I think
it’s necessary to compare it with other congenitally acquired
viral illnesses. Using national incidence of disease, I would
anticipate that at Kings County Hospital there will be, for
example, one fatal congenital case of herpes virus every two
years, rubella every four years, and cytomegalovirus or
toxoplasmosis perhaps every five to ten years.

Using a conservative estimate of one-third for the
transmission rate of HIV with a 2 percent seroprevalence, I
anticipate one fatal congenital case being born at the one
institution every ten days. It’s not just a parochial issue.

By 1991, the cumulative national total of HIV-infected infants
may be ten times that of congenital rubella, syphilis and herpes
combined.

I feel, therefore, a sense of urgency as the virus is
moving quickly into the population of heterosexual «males in my
community. It is clear that efforts to deal with this problem
must begin with the reservoir of infection which is intravenous
drug abuse.

The majority of infected women in our studies have
contracted infections with the virus either through drug use or
sexual exposure to drug users. Our principal goal, therefore,
must be to eliminate this reservoir. Thus, there is a critical
need to provide alternatives to intravenous drug use.

In pregnancy in particular, drug users may be able to
organize their lives sufficiently to get off street drugs and on
to methadone if adequate numbers of treatment sites and

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counselors are made available. Unfortunately, this is not the
current case. oo

Additionally, even if these efforts are made, programs
still need to be developed for those women already infected. For
them, our goal has to be to empower reproductive choices and to
Prpvice appropriate prenatal services.

Pregnant women infected with HIV must be informed of
these facts:

First, pregnancy may represent an increased threat to
their health by masking early symptoms of HIV disease such as
fatigue .or anemia.

Second, the choice of therapeutic agents for HIV-
related illnesses may be altered because of concerns about the
fetus.

Third, there is a theoretical possibility that
pregnancy, being a state of relative immune impairment, may
accelerate the course of HIV disease. |

~ Finally, one-third to two-thirds of pregnancies will
result in the birth of a child with a fatal illness which is
often preceded by a prolonged and painful course, as we just
heard described.

Clearly, all this information is germane to
childbearing decisions, and all women should have access to HIV
tests in order to determine their serostatus and then form their
reproductive choices as they so desire.

The management of pregnancies as well as the patient’s
choices may be affected by serostatus. If the patient is
seropositive, maximal efforts must be made to avoid increasing
the risk of infection of neonate. It is possible, for example,
that the routine placement of scalp clips, which are used to
monitor a baby in labor, could enhance inoculation of virus from
vaginal secretions into the neonate.

Breast feeding needs to be discouraged. |

Also, since half of the children of infected mothers
may not develop AIDS, it is important to make sure they do not
develop other illnesses to which their infected mothers may
expose them. Thus, for example, mothers should be screened for
diseases, such as hepatitis B, which is transmitted in the same
ways as HIV, which may be found in the same population and whose
neonatal consequences are preventable with appropriate

interventions at birth.

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Serostatus, therefore, is useful information for
obstetricians, and since physical-elicited risk factors fail to
identify many infected individuals, prenatal HIV testing should
be routinely offered, though certainly not mandated.

For those women who do not use intravenous drugs and
for whom shared needles are not a concern, there are still 75,000
infected heterosexual drug-using males in New York who pose an
ongoing threat.

Since the overwhelming majority of these women are
uninfected but in many communities sexually at risk, I believe
our first priority must be to engage all women in practices which
will reduce the risk of HIV transmission. Women must be informed
about safer sex and encouraged to practice it.

We may believe that abstinence outside of marriage is
the best protection and most appropriate behavior for all
individuals, but I don’t think that disagreement with that
philosophy should be a capital offense. If we don’t teach women
safer practices and provide ready access to condoms, we will be
condemning many young womeh to exposure to a fatal illness.

Education about risks should be provided in a
culturally-appropriate manner.

Additionally, all providers of women’s health care must
be enlisted in efforts to prevent sexual transmission of HIV.
Most women who have a visit to a women’s health care provider,
whether it be for family planning or a routine checkup, have no
other health contact annually.

Thus, these providers must assure that teaching safer
sex becomes as much a part of medical routine as checking a
patient’s blood pressure, taking a PAP smear, or teaching breast
self-examination.

Lastly, all these efforts to empower women’s choices,
engage them in safe behaviors and enlist all health workers and
disease prevention programs, are dependent upon strong anti-
discrimination legislation. I have traveled across the country
and have spoken to many women’s health care providers and have
urged them to become involved, to counsel women, and to offer HIV
tests.

I have also cared for infected women during their
pregnancies and have offered HIV tests to many other women.

All of these groups, providers, infected women and
women at risk, are concerned about testing and are distanced from
public health efforts because of their fears of a discriminatory
sequelae that can accrue to an infected individual.

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Until the health community and the at-risk community
are assured that this country will not countenance
discrimination of any nature on the basis of serostatus, maximum
efforts to forestall the spread of disease to women and children
will not be achieved.

I began by saying that I was a physician in a sentinel
community. I would.like to conclude by reminding you that a
sentinel community is not a community of biologic variance but,
rather, a community of individuals initially exposed to the
virus.

If our response to women and children now getting
infected in this community is to merely label them as a new risk
group and to again assure ourselves that AIDS has not entered the
"general population", then we may be witnessing the same
shortsightedness of which the Reverend Neimoeller spoke in World
War II when he said, "In Germany, they came first for the
Communists, and I didn’t speak up because I wasn’t a Communist.
Then they came for the Jews, and I didn’t speak up because I
wasn’t a Jew. Then they came for the trade unionists, and I
didn’t speak up because I wasn’t a trade unionist. Then they
came for the Catholics, and I didn’t speak up because I was a
Protestant. Then they came for me, and by that time no one was
left to speak up."

It -is time for all Americans to speak up, get involved
and acknowledge that HIV is a concern for everyone. I’d like to
thank the Commission for their attention,

DR. PRIMM: Thank you so much, Dr. Minkoff.
Dr. Mitchell.

DR. MITCHELL: I have found that it creates less
confusion if I first explain what it is that I do and who is the
population with which I am concerned. I am an
obstetrician/gynecologist with a specialty in high risk
pregnancies. I take care of pregnant addicted women.

My interest and concern for this population preceded
the AIDS dilemma. My concerns have always been how to improve
the obstetrical outcome of this very needy group of women, most
of whom are women of color.

AIDS and HIV infection have just added an additional
burden to an already overburdened group of women; yet, when HIV
is discussed in relationship to these, women, many fail to
understand that they are women first and drug users second.

Because they are women first and mostly from-cultures
where childbearing is highly regarded, our present

203

 

 

 

 
 

 

recommendations for these women to delay or avoid childbearing
altogether are often not heeded.

While we all understand the reasons behind these
recommendations, we cannot understand why they are not followed
by these women.

Historically, we have not been able to reach this
population of women around other health issues. This is the same
population who are most likely to be adolescent mothers, the same
population who have the highest risk of low birth weight babies
and infant mortality, and the same population that is most likely
to die from childbirth even before AIDS.

\
Yet, many discuss this population as if it were new.
We are reluctant to admit that we have constantly failed these
women. In the past, no one suffered from our failures except
that population. Now we fear if we fail, everyone will suffer.

Perhaps this fear will allow us to put aside old
theories and approaches. Perhaps now we are willing to ask the
women and enlist their help in attacking this problem of AIDs.

If we aren’t open and accepting of ideas that may not
come from traditional sources, I fear we will fail this
population again.

Our recommendations and policies must not only be
scientifically sound but based in the reality of the many varied
groups of women we are trying to reach. We must also assure that
decisions concerning their reproductive health are made by them
in their own best interest, not ours.

That includes supporting in a sensitive and
nonjudgmental way that woman who decides to go through with the
pregnancy but also expediting services for the woman who may
choose to end a pregnancy.

Remember, the method of insurance this population of
women is most likely to have is Medicaid.

Finally, what is often ignored is that the addicted
woman responds to the idea of pregnancy as many other women who
are at risk of endangering their lives during pregnancy or
producing a less-than-perfect child. She is no different from
the woman with diabetes or heart disease who chooses pregnancy
despite the recommendations of her physician or the family with
a known genetic defect where the woman decides to take the risk
of pregnancy.

The desire to reproduce is an extremely strong one
and must be respected, regardless of the status of the woman.

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I have four recommendations. One, and most
importantly, an increase in drug treatment programs with options
of methadone maintenance and drug-free alternatives.

Two, funding to make these programs more comprehensive
in their health components, especially in the care of pregnant
addicted women.

Three, research into the most effective ways of
educating ethnically and culturally diverse groups.

Four, the inclusion of women of color on all
policymaking committees at local, state, national and
international levels. Thank you.

DR. PRIMM: Thank you very, very much. Dr. Finnegan,
you talked about the possibility of having all options available
for people who become pregnant who are human immunodeficiency
virus antibody positive. Perhaps you would comment on that.

DR. FINNEGAN: I’m sorry, can I clarify your question?

DR. PRIMM: You spoke of options for people who are
HIV antibody positive who might be giving birth, the mother, and
options for them. What are some of those options?

DR. FINNEGAN: First of all, in our program where we
enroll the mother as early in pregnancy as possible, the first
thing that we discuss is what the program offers and make her
realize that she is at high risk because of her drug addiction
and because of many, many times having a multitude of medical and
obstetrical complications.

As we discuss this, we also try to see if the mother
really wants this pregnancy or whether she does not. If not, we
certainly offer her the option of terminating the pregnancy.

In our situation, just as Dr. Mitchell mentioned, the
women are not generally interested in terminating the pregnancy.
We have probably less than 5 percent of the women that I’ve cared
for, and it’s really up in the hundreds and hundreds over the
last 17 years, who have opted for terminating the pregnancy.

In view of the HIV epidemic, it is, I think, more ,
crucial to discuss this more clearly with them.

In addition, the women also need -- to be informed in a
different way than we inform the general population concerning
disease entities.

205

 

 
 

The kinds of brochures that are available, first of
all, there were so many that were not appropriate for women in
general, and certainly there were few that were appropriate for
pregnant women.

The terminology is on an educational level that’s too
high. There’s too much verbiage. There aren’t enough
descriptive pictures.

I’ve had some experience in going to other countries
such as the Netherlands where they have information at a level,
even in comic books at a level that is appropriate for the women.
It’s very descriptive; it’s in their language.

Also, I mentioned that we should have videos. You
know, we have videos to learn everything, and since television
is such a descriptive media, I feel that if we could have the
videos for the women within the clinics that really show them
safe sex -- they can’t conceive of that by just describing it
or just reading it. They need to see it visually.

I think that these kinds of educational tools should be
considered.

DR. PRIMM: Dr. Heagarty, it was reported in the
Amsterdam News, which is our bible in Holland, as you know, that
over all, at least 2,000 children of all ages have entered foster
care in the last two or three years, and that New York City has
at least 40,000 to 45,000 children who have at least one parent
in a methadone or residential drug treatment program.

We know in methadone maintenance treatment programs
that 60 to 65 percent of the people in those programs are
positive for the antibody to the human immunodeficiency virus.

N\

It’s also estimated by the Division of Substance Abuse
Services that New York City will have soon 150,000 children being
raised by mothers addicted to narcotics or other drugs.

I wonder what you feel as the Director of Harlem
Hospital’s Pediatric Service, with a plethora of experience in
dealing with these people, would be a suggestion for this
Commission to recommend to the President to thwart this
disastrous situation that we face in New York City and
particularly in the Harlem community?

DR. HEAGARTY: That is sort of a slow curve softball
that I can hit anywhere I want to. Thank you, Dr. Primn.

{[Laughter. }
DR. PRIMM: But to my friend, I thought I could --

206

 

 
DR. HEAGARTY: Yes, I know, you got me into it in the
first place.

The first thing, as the thrust of my remarks, I want to
be very clear with you. We must do what we already know how to
do. We must provide the medical care we know how to provide, and
we must provide it at least to the children and certainly to the
adults. These children are poor, and they are found in city
hospitals. City hospitals don’t have any money.

So if you do nothing else, you must tell Mr. Reagan and
the Congress that you must do what we know how to do. We know
how to give the antibiotics, and we know how to take care of
these children.

Now, you will find referenced, if you haven’t already,
the Surgeon General’s workshop on pediatric AIDS, which is a
whole series of recommendations that are quite germane to the
delivery of health care for these children. That’s the first
thing.

The second thing is that the issue of foster care is
enormous, not only in New York but, in my judgment, throughout
the country. Two viruses have hit Harlem and the urban centers
of this nation. One is the HIV virus. The second, which is even
more serious in many respects, is the virus of cocaine or crack.

As much as 10 percent of the newborn babies in my
hospital have cocaine in the urine at birth. Cocaine is what is
causing the crisis in foster care and the overload of the foster
care system. There 18,000-plus children in foster care in the
City of New York right now. That is more children than the place
where I grew up in the hills of West Virginia.

The child welfare authorities receive somewhere between
100 and 150 referrals a day, and they are simply overwhelmed.
They cannot find places for these children.

We have not come to terms with the fact that we have
huge numbers of children displaced, and we have not developed the
policies nor have we shown any indication that we have the will
to put the money that is required in the systems that will care
for these children. We haven’t even rethought it.

 

Let me point out to you that it’s not just poor
children. "Father Knows Best" hasn’t been around for a long
time. Mother is not home in the middle class, either. Half the
children in this nation across social classes are going to live
in one-parent families at some point in their childhood. We
wonder why we’re wandering around as if Robert Young and Jane
Wyatt were still Father Knows Best. We wonder why recurrently we

207

 

 
 

 

have child abuse scandals in day care. That’s not low income.
That’s middle class. We have not examined the basic premises
about how we care for our children with the changing family
structure, and we’re still wandering around as if we have a
nuclear family. We don’t.

So I don’t know if this answers your question. It
gives me a chance to give a little speech.

Two issues: One is that we must do what we know how to
do. You’ve got to find ways to get me the money, the nurses,
the personnel I need to take care of those children. We’ve got
to find a solution to the foster care problem.

I have no idea what to do about drugs in Harlem or in
Westchester County. I/’11 leave that to you, Dr. Primm.

DR. PRIMM: Thank you, Dr. Heagarty.

Dr. Minkoff, do you have some suggestions for that
particular request? What can be done in New York City, which
seems to suffer more profoundly from the problem than any other
one of our major cities, and particularly Brooklyn and Harlem, as
you know, and as you have indicated in your statement. What
would you suggest?

DR. MINKOFF: I am at the consistent disadvantage of
always following Dr. Heagarty’s remarks.

DR. PRIMM: I’11 make sure that doesn’t happen the next
time.

DR. MINKOFF: I certainly think the first point she
made was quite cogent, that whatever we’re dealing with, we
already have certain abilities that lack the resources to
implement them, and that goes from before birth through the
childhood period. '

Before birth, we need to, as I’ve said before, empower
women, give them choices and give them appropriate care. We
don’t have the resources to do that. We can’t offer women these
choices because most care providers do not want to engage women
if they cannot provide the resources to them after they have
provided their serostatus.

A lot of people are suggesting, for example, that every
prenatal service in the country start to offer the test, but 99
percent of these programs would give the test and give nothing
else. If a woman was positive, she would be fairly abandoned to
the great abyss of no counseling and no outreach.

208

 

 
 

 

There are counselors available from Gay Men’s Health
Crisis for gay males. There are very few counselors available |
for women. ;

As we move from the drug-using women to the women
exposed to drug users, there are even less counselors. Your
methadone centers have counselors, but if the male is there and
he has a partner who is not a constant partner and she gets
infected, there are no counselors available to her.

So many obstetricians and genetic counselors and people
who have the opportunity to interface with these women will put
off getting involved with this issue because of: their concerns
that all they will do is give a woman bad news and then abandon
her because there are no resources to which she can be referred.

DR. PRIMM: Would you suggest some contact tracing for
those women who might be a sex partner of an intravenous drug
user that’s in a methadone maintenance treatment program, that we
know the. serostatus of that individual and we know of a
significant other? Would you suggest us getting in touch with
that individual?

DR. MINKOFF: I think the reality is that at this point
in the epidemic in the drug abusing community, the gay male
community, that contact tracing is probably not a very efficient
use of resources. The disease has become so disseminated into
the community, when 2 percent of all women are infected and half
of them don’t Know where they got it from, that I don’t think as
a general policy issue, it’s really relevant.

For an individual involved with an individual condition
who might know and has the ability to contact a person with the
permission of the source, fine, but I don’t think it’s a real
issue at a policy level.

DR. PRIMM: Dr. Finnegan?

DR. FINNEGAN: We are discussing preventing a very
devastating disease, but what you have to remember is that
treatment is prevention. In the pregnant drug-dependent woman
we shown many, many times over -- I think Drs. Minkoff and
Mitchell can attest to the fact that -- if a woman is given good
prenatal care -- and all of these women need it because they’re
very high risk; they have not had any medical care for years and
years, they have poor nutrition, they live in situations that are
bad all over from the standpoint of their own health, but in
pregnancy it is worsened. So that with treatment we have shown
over and over again that we can improve the outcome of pregnancy.
The mother is better off, certainly the fetus is better off, and
the infant and child is better off.

209

f—~ ~

 

 
 

 

We don’t need to reinvent the wheel; we know what to do
for these women. Just as Dr. Heagarty says, we know that we have
to provide the intensive prenatal care, the psychosocial
services, and if they are using heroin, methadone maintenance.

The problem has been that within the city of
Philadelphia, for example, we don’t have a city hospital anymore.
The mayor elected to close it because the city was not interested
in being in the hospital business. So for the last decade, the
rest of the hospitals throughout the city have cared for the high
risk patient, the inner-city patient, the indigent patient. And
our clinic that was at the hospital, the city hospital, was moved
to Jefferson.

Currently, throughout the 12 centers in the city that
deliver high numbers of babies, about 10 to 15 percent are born
to women who are using illicit drugs. I can’t take care of them
all. We have six or seven calls a day from throughout the city
to enroll women. If you are pregnant and addicted in
Philadelphia and you call me today, your appointment will be the
middle of January. That’s too late, because you need to, as one
says, catch them when they’re ready. And when I say treatment
works, I know it works because we have many, many success
stories. Does it work in 100 percent of the cases? No. No
disease is 100 percent curable. We all have various diseases
that you all know of that only have a certain survival rate, a
certain number that can be helped. But we can help many.

DR. PRIMM: What about if we expanded primary care to,
as Dr. Mitchell has suggested, to include in drug treatment
programs, methadone maintenance treatment programs, prenatal
care? Or like Dr. Minkoff is doing in Brooklyn, trying to get
all the methadone maintenance programs to send patients who are
pregnant to his program that will give prenatal care and
postnatal care, and of course, intrapartum care, also. Would
you suggest that, Dr. Mitchell, as a way to go?

DR. MITCHELL: This group of women needs to be treated
at whatever point they enter, and if methadone maintenance
clinics are where they’re seen on a daily basis then that is
where they should be getting their care.

What we seem to forget is that this is a population of
women who are very leery of institutions, and so they develop
loyalties to certain institutions when they become familiar with
those institutions and become trusting of those institutions. To
then send them to other institutions, to then have them turned
away by long waiting lists only increases the fact that they will
not show up. Instead you should expand where they are now being
seen to include comprehensive programs, and that’s the key word
here, but that means money. And I think what all of us are
saying is that again, this is a population who has traditionally

210

 

 
 

 

been underfunded, not only in health care but other issues, and
if we continue to do that, this is a population that we will
again fail.

DR. PRIMM: Dr. Conway-Welch?

DR. CONWAY-WELCH: The previous panel spoke about some
of the pros and cons of having a storefront or neighborhood
freestanding testing/counseling center versus having those
centers affiliated with larger institutions perhaps not so/
conveniently located. And I think I’m interpreting a,little bit
more in terms of what they said. My question is, do you have
recommendations about the effectiveness of one site or location
versus the other? If we’re looking at establishing ,additional
counseling centers -- and that may be part of a methadone clinic
or not -- additional places where patients can go for testing if
they choose and counseling, do you have any recommendations as to
whether or not they should be freestanding, located in
neighborhoods; do they need to be associated with larger
institutions because of the backup available? Or is that not
really an issue that needs to be considered when we’re looking at
this issue?

DR. HEAGARTY: My guess is that it’s neither one nor
the other; that’s a structural, organizational issue. This is a
big country and I suspect it would depend on the local
circumstance how you organize it.‘ But a comment about the
counseling business, because it’s almost become a straw man. We
can’t do something because we don’ t\ have any counselors and we
don’t have counselors and therefore \we don’t do anything, and
counseling sounds like chicken soup.

But in our experience, counseling 4 is a primary
relationship between a care giver and a patient. Now, I’m not
certain that we should allow the physicians in general to get off
the hook around this counseling business. I mean, if a patient
has cancer I don’t say well now, sweetie-pie you have cancer and
I’m going to send you off to your local counselor who is very
likely to be a 25-year old with a bachelor’s degree in
psychology.

So sure, we need additional hands, we need people to
support the counselors, we need people who have particular skills
in counseling, I suppose. What we need is to take the folks who
have a positive antibody test and deal with them, and you can’t
do that in one visit or two visits; you have latched onto them
forever, as near as I can make out. Even if they’re asymptomatic
they ’re- going to have to come in and see you and you’re going to
have to say how’s your mother, how’s your father, how do you feel
and so on. And that’s a labor- intensive, time-consuming
business. It is, in my mind, primarily the responsibility of the
physician aided and abetted by the other traditional professions

211

 

 
 

 

-- social work and so on. But in many ways, this counseling
business sounds very much like a straw man to me.

DR. FINNEGAN: First of all, I have to speak from the
position that I come from which is the care of the pregnant
woman, and in that situation I agree with Dr. Heagarty that we as
the physicians must be responsible, and I think they should be
coming to a health care facility. The problem of the pregnant
addicted woman is too complex to go into a storefront. In
general what I have found is that methadone clinics throughout
the city are very anxious to have a woman get out of their clinic
as soon as she becomes pregnant because it really is a very
complex issue then; they’re not knowledgeable enough with regard
to the management of methadone during that time; they do things
that are really contrary to prolonging the pregnancy and helping
the woman.

Furthermore, if the woman is going to a clinic that’s
associated with a medical facility, we can coordinate her
medical care; literally taking her by the hand to the prenatal
clinic. One can hold the methadone and say you will receive your
methadone as soon as you go next door and have your ultrasound
done and this and this, all these necessary things. And although
that might sound like we’re treating them like adolescents, yes
it is. But in some situations that’s necessary because they’re
not aware of what’s important for them. So we really protect
them from themselves in the initial stages of the game.

I think they also get a great deal of warmth in our
setting because we care; we care about them as people and we care
about the baby, and we coordinate all of the activities that are
necessary for a woman in general and for a woman who is going to
be a mother. And they are much too complex to just have -- many
of the methadone clinics that you’re all aware of may have a
counselor-patient ratio of one to 50, one to 70. You can’t do it
that way.

From the standpoint of ongoing counseling, I sit with
the mothers and explain to them about the HIV testing, and then
when the test comes back they meet with me, and that takes about
an hour to an hour and a half. It takes a long time to counsel a
young woman who’s 21 who says to you after you tell her the test
is positive, I’m going to die, aren’t I. And especially when she
has a few other children and you’ve got to decide how you’re
going to plan for all of this.

As Dr. Primm said earlier, there is also the
counseling prior to the test, and there’s the counseling between
the test and the time it comes back, because they see me in the
halls and they ask me, did it come back yet, did it come back,
because they want to know, they’re very anxious. But after that,
it’s essential to have they have either -- in our situation we

212

 

 
 

 

have a perinatal nurse who is very much involved with the HIV
testing and the explanation, and also our counselors who are
master’s in social work, they must carry on this counseling
because it’s an everyday phenomenon. You don’t just talk about
HIV one day; you’ve got to keep talking about it.

DR. PRIMM: Dr. Finnegan, you mentioned the patient-
counselor ratio. What would you suggest? You talked about 50:1
patient-counselor ratio, even as high as 75:1. We have had
previous discussions yesterday about that fact, and how do you
feel with your patient population in Philadelphia who are on
methadone? What should be the maximum patient-counselor ratio?

DR. FINNEGAN: We have always tried for 1:25, 1:30
ratio.

DR. PRIMM: I would like to stop you there, if I
could, because that’s what I prefer. But you go on.

DR. FINNEGAN: It’s been very difficult for me to
justify that to the funding individuals, because they can’t
understand why the counselor can’t take on 40 to 50 patients.
And I try to explain to them that when they have 25, they really
have 50, because there’s a baby, and sometimes babies. And it’s
much more complex because the counselor must deal with the whole
issue at the time of birth, is that mother ready; does she need
some more time before she can care for this child?

I should be in Morristown today. I have been
subpoenaed, and I hope I don’t go to jail, but the counselor and
I were subpoenaed because of a mother who was not ready, and we
have to go to court. That takes a lot of time. If she leaves
the institution for four hours, which is basically what’s going
to happen because of the travel time then who is going to deal
with the other patients? When you deal with pregnancy and
mothers and babies, you need a lot more time. I, of course,
personally feel that you need a lot more time with all of these
addicted individuals, and why those high ratios were defined, I
suspect, was a funding issue. But it is not good care.

DR. PRIMM: Dr. SerVaas? Did you want to say
something, Dr. Heagarty? Mr. Mitchell?

DR. MITCHELL: Yes. What I wanted to explain is that
when you are talking about counseling, and you talked about the
previous panel, I think you have to realize that there are
various populations that we are trying to reach. And when you
are addressing addicted women around any issue, counseling takes
an enormous amount of time. When you add to that HIV infection
that you’re counseling lifetime sort of choices, and decisions
that affect not just her, but an unborn child, so that the issues
around counseling addictive pregnant women are much different

213

 

 
 

 

than just counseling someone who may want to know what their HIV
status is, and how many less risk factors.

DR. PRIMM: Dr. SerVaas?

DR. SERVAAS: My question is to Dr. Minkoff, are there
any good studies being done or completed that tell us what
pregnancy does for the AIDS positive antibody woman’s immune
system? The effect of multiple sclerosis, I believe, is bad for
the immune systems and others, for example, and the well
publicized case in New Jersey of the Sterns where Mrs. Sterns,
who is herself a physician with MS, and she chose to have a
surrogate mother.

Could we not emphasize and reach these girls who are
antibody positive for AIDS, don’t get pregnant in the first
place, it may damage your health, let alone what it will do to
your possible offspring? But adopt a baby instead. And I know
that won’t be so popular with all of your women. Dr. Jim Curran
told us that there is some pretty good preliminary evidence about
the immune system in AIDS when women get pregnant, and I would
like to know if you can send us anything that you have of that
preliminary evidence.

DR. MINKOFF: In the first place, there is a very
strong theoretical groundwork which would suggest that pregnancy
could be bad for somebody who is seropositive. It is a time when
there are alternations in T-cell and B-cell function and many
other viral diseases occur more fulminantly and more frequently
in the setting of pregnancy.

On top of that, there was some doubt if that was
initially interpreted as demonstrating this fact. Dr. Scott’s
data and some of our own data showed women who had given birth to
children who developed the disease. These studies antedated the
testing, so the only way to identify the infected mother was the
birth of a child who got sick. When these mothers were followed
for two and a half years, 50 to 75 percent had gotten ill, which
was much higher than reported for other risk groups,
hemophiliacs, homosexual males.

However, since those mothers were identified because
their children got ill, it is possible that they are a subset
with disease further along towards clinical illness, because
there is some evidence that the further you are in disease
progression, the more efficient you are at transmitting the
virus.

There is currently no empiric data of which I am aware
to demonstrate in a good controlled study that pregnancy does in
fact accelerate disease progression. There are several ongoing
studies where T-cell and B-cell functions are being measured in

214

 

 
 

 

the first, second, and third trimester, to determine that, and
the results should be forthcoming.

Data from around the world have been conflicting. But
I do think it is relevant to tell a mother that whether or not it
enhances the progression of disease, it may alter your treatment
for disease; somebody may not want to give you AZT because it’s a
purine analogue which causes problems. You may have some fatigue
in the first trimester which is dismissed as pregnancy, and we
have seen several cases of pneumocystis in which the diagnosis
was missed for a substantial period of time because the symptoms
just seemed to be due to pregnancy.

DR. SERVAAS: Thank you.

DR. MITCHELL: What I’d like to say is that presently
80 percent of the women who have AIDS are women of color. Over
50 percent are black, and 20 percent are Hispanic. More than 50
percent of women who have CDC-defined AIDS have as their risk
factor IV drug abuse, and then a great majority of the
heterosexual transmission is due to a partner who is an IV drug
abuser.

These are not the types of couples that traditionally
adopt, or would have adoption as an option. They are also
talking about black and Hispanic women where childbearing, one’s
fertility, is very important in the culture. You take away that
fertility, you take away that woman’s status.

You are also talking about addicted women where
pregnancy is also a strong motivator for them to see if they can
turn their lives around. That’s when they most often come into
treatment, that’s when they’re most compliant in their programs.
They’re like all other women, "I’m going to get my life together
around this baby, I’m going to improve my future," and whatnot.
So adoption is not an option to women who are presently infected.

We also have to be very, very understanding of cultural
differences, and whereas the case in New Jersey may have been
appropriate for that physician, it is not an option for the women
which we are dealing with. And I think that we have to be very,
very concerned about that when we are talking about what it is we
need to do. We are not talking about middle class white women
here. We are talking about minority women of color who most
often are poor.

DR. FINNEGAN: I would like to just second Dr.
Mitchell’s comments. Having worked with these women for so many
years, I feel that I know them very well, and there is no
question of the cultural difference, and they feel whole only
when they can procreate, and that is a very important issue.

215

 

 
 

 

Secondly, women on drugs are not always cognizant of
what they are doing, and they are not, because of the
pharmacological action of the drug, and also they are not in
control. And many times male partners are very influential.

For example, it is not infrequent that our women, when
we tell them about their infectivity, not only with regard to
HIV, but also with regard to gonorrhea and other diseases, they |
advise us that they just couldn’t stop having sexual activities
because their man enjoys taking cocaine, and his vision of sex is
to watch her involved in a group sexual experience.

Now that is a situation in which there is a lot of
transmission. That’s what she must do to keep her man.

Also the men want them to procreate because they want
to have offspring.

Lastly, if you say to a woman, that you are HIV
positive, and the best thing for you and your future is for you
to not have any more children, the next question is, well, what
is the chance that my baby will be infected? And the answer is
50 percent. {

You and I may not wish to gamble on 50 percent, because .
we know that that’s a pretty high percentage. But in their
situation, they are willing to gamble, because that baby might be
one that is not infected, and that baby will live on in their
eyes. vere ty

DR. PRIMM: Dr. Lee? ere

DR. LEE: We have heard eight people here who are as
deep in the trenches as anybody I know in my medical career.
The four panelists right here are here for one reason. You have
your ghastly stories that you are telling because of the drug
industry.

As far as I can determine, 99.5 percent of these kids
are there because of the drug industry. We heard from the first
four panelists, their experiences with the sex industry. Each
one of you four has had a bigger impression on me than the four
horsemen of the Apocalypse.

The drug industry fertilizes the sex industry. The
panelists before you repeated that over and over again. I am
aware that, for instance, in this victimless, harmless
pornography industry, for instance, the stars are routinely fed
drugs so that they can perform better, and obviously end up
addicted.

216

 

 
 

 

That’s just a small aspect of it. We talked yesterday
with Mayor Koch in a half-joking way about military solutions to
this drug abuse problem. All I can say is that the sex industry
and the drug industry have become terrible prices that we are
paying in this free society.

I hope that this Commission is going to be able to make
some sort of dramatic statement regarding this to the President.
Thank you.

DR. PRIMM: Dr. Crenshaw?

DR. CRENSHAW: I commend your concern for the women and
the children that come from their pregnancies, and also
appreciate the pressures that these women are under, due to the
sexual demands, or lack of understanding, or refusal to enter
therapy of their partners.

It is often very difficult to get men into counseling
situations in those settings.

Can you tell me what it is you are able to do, or what
your experiences have been with regard to the fact that you are
trying to give these women strength to deal with the situation
that can sometimes be impossible for them if you don’t get the
cooperation of their male partner?

How do you help them develop that strength with one
effort? And the other is, what have you been able to do, and
what has your success been, to enroll the partner in trying to
help in this situation, as far as future pregnancies are
concerned and other considerations?

DR. MITCHELL: One of my issues, again, goes beyond
AIDS, and that is that around family planning we have put that
burden on women, when in fact sex is a 50-50 partnership.

I think that, as in one of my recommendations, we need
to rethink the way we have been doing things in the past, because
we have not been successful. This group has not been successful
in using family planning practices before AIDS came along. It
may have been, again, the way in which we were giving the
information, and asking women to respond to it.

It is not often, except around labor and delivery, that
obstetricians ask for the partners to come in. One of the things
that I have done with my women, and I have done in my adolescent
Clinic, is to try to involve the partners early on, to get them
to see that this a joint responsibility.

A lot of times when you get the partners in and you set
up a dialogue, you don’t know what happens when they go home; but

217

 

 
 

 

at least if they come in, you’ve made one step of saying this is
a family issue, this is not her problem, this is not your
problem.

This is the problem of the family, and I am going to
give you information and I am going to see how the two of you
deal with that information.

Again, we can’t expect the same sort of responses as
you do with middle-class families. You still may not get the
response you want. But at least, I think, it starts dealing with
both partners, not putting the burden on one.

DR. CRENSHAW: Thank you.

DR. FINNEGAN: We have had about a 50 percent success
rate with bringing in the partners. They are not always willing
to do that. They are very anxious, though, many times to come to
our prenatal classes. In fact, one of the sessions that I do is
on neonatal abstinence.

The men come in and I must tell you that they ask more
questions than the women. They are very concerned. But
basically what happens there, which I have to be careful of, is
that they are trying to put the guilt for the potential
abstinence that occurs on the mother.

So it gets to be a little complex. From the
standpoint of the HIV situation, I really have been very
discouraged. When I tell the women that I would like them to
come in with their spouse or partner, so if they need my help to
explain to him what the situation is with regard to their HIV
positivity, they just look at me and say, " Do you want him to
kill me?"

That is almost an across the board situation. What
they don’t even think of in that situation is that he could have
given the disease to her. It somehow is never a thought. Also,
when it comes to telling them not to share needles, they say,
"Well, I only share them with my partner."

Then when you say, “Well, does he share with anyone
else?" Well," yes". The lack of logic is interesting, but also
quite devastating.

DR. CRENSHAW: I might add there that in many of the
studies that are available on extramarital sex, a large number of
men go outside the relationship for the first time during that
neonatal abstinence period, or even a difficult pregnancy.

It puts a greater burden on you particularly if both
are infected. It is a big challenge.

218

 

 
mo
!

| “DR; PRIMM: Some of you have suggested that one way to
put an end to some of these problems that you face is to
increase drug treatment programs. One of the suggestions by Dr.
Mitchell was to increase both methadone maintenance program
capacity, and certainly drug-free capacity, so women could have
an option to go into either one of these programs.

There have been a number of reports about the
immunosuppressant nature of methadone, both on the fetus and on
the mother. Any one of you, if you would like, I would like for
you to comment on that.

Howard? Also I was going to include in that Howard,
and now you really got caught, other co-factor behavior.
Alcohol, tobacco, and other drugs of abuse, cocaine. Dr.
Finnegan and Dr. Heagarty both talked about the use of cocaine
and crack very heavily in Philadelphia, and in New York.

DR. MINKOFF: I am glad, Dr. Primm, that you can throw
something other than a slow curve ball. There certainly is
evidence that there are co-factors that influence the relative
amount of production of virus.

Factors that have been suggested have included other
sexually-transmitted diseases. We should remember that, in the
United States, annually there are three million cases of
chlamydia, and a million cases of gonorrhea, and a half million
cases of hepatitis. I can go on and on.

All the preventive programs for safer sex will have a
very beneficial effect on those diseases as well. Any antigen
stimulus, and certainly drug use has been suggested as an antigen
stimulus that could cause a 50-fold increase in the replication
of virus, and hence, enhanced progression of disease.

These are all additional co-factors that have been
suggested, although I am not aware of any studies that have
actually shown a comparative rate of disease progression based on
immune status in drug users, although drug users certainly have a
much more fulminant course.

But there are so many other factors, social factors,
that the type of health care in general may be as relevant as the
direct antigenic effect of the drug.

DR. PRIMM: Dr. Heagarty, do you find that babies born
to methadone-maintained mothers are more immuno-suppressed, for
example, than babies born to other mothers?

DR. HEAGARTY: I don’t know that I have ever given
that a single, solitary thought, to tell you the truth. You

219

 

 
 

 

should be clear that we cannot detect, unless we were to do
routine prenatal screening, this disease does not present in
children in the newborn period.

It is well known that methadone and heroin have
withdrawal symptoms, they are really quite visible in the newborn
nursery, and that the methadone withdrawal symptoms are somewhat
more severe often than the heroin withdrawal symptoms in
newborns.

But that really is irrelevant to our problems of
detecting these infants. I have come, in the last 18 months as I
have become obsessed with this problem, almost -- but not quite
-- but almost to the conclusion that we should be testing much
more widely pregnant women in areas of high prevalence.

The reason I say that is that I am getting very weary
of admitting four-month old infants with fever who rapidly become
septic and die, because I don’t know that they are antibody
positive.

I don’t know, Howard, what you think; but I, as a
pediatrician, am beginning to think -- it is really important for
me to know, in 100 babies, which baby is positive, and which baby
is negative. It will make a material difference in the way I
Manage the child.

DR. PRIMM: You are talking about selective,
geographical areas of testing.

DR. HEAGARTY: Dr. Minkoff tells me in the Journal of
the American Medical Association quite recently that two percent
of the infants born at Kings County --

DR. PRIMM: One in 50 women.

DR. HEAGARTY: That’s right. My guess is that it is
two to three percent at Harlem. That means that if I deliver, or
if Dr. Williams, the Chief of OB, delivers 3,000 babies, I have
gotten 90 immunologic time bombs wandering around Harlem this
year, last year, and Lord knows what next year is going to be.

I am beginning to think that we really should expand to’
a routine basis antibody testing of pregnant women in communities
where we know this bloody virus is to be found.

Simply so that the pediatrician and the mother knows
that this baby is at risk.

DR. PRIMM: How can you and I get around being called
racist when we do that in Harlem and Bedford-Styvesant --

220

 

 
DR. HEAGARTY: You have an easier time, Dr. Primm, than
I do.

[Laughter. }

DR. PRIMM: I consider you one of us, you know that. I
mean you are the only Black Irishman that I know.

[Laughter. ]

DR. HEAGARTY: I think that the minority community, the
Black community, has come a long way in the last year as well,
recognizing that this is a problem.

I am not saying that we should mandate, or we should
require, but I really think that we ought to offer much more
widely than we are currently the opportunity for women who are
pregnant to be tested.

If you do that, of course, you are going to have to
provide us with counselors and the obstetricians. It is going to
take longer. Lady, you’re antibody positive -- a nice
obstetrician has got to sit there and talk to that woman for 45
minutes, and tell her what that means. And she has got to tell
her the next time she comes in.

Now, you have been to Harlem, Dr. Primm. All of you
have been in city hospitals. If you don’t give us the troops to
do that with, there is going to be utter devastation in the low
income areas.

DR. MITCHELL: Maybe I can help answer that, because I
don’t think there are many people who would call me racist. But
coming from Boston, where the problem is on a smaller scale, and
being the obstetrician who most directly deals with my addicted
women, I think that you have to know how to counsel properly.

One, you have to have the trust of the woman. I can
say to date that I have never had one of my addicted pregnant
women refuse testing. It is the way in which I offer it to them
that I think is most important.

I think that is what is most important in all the
counseling: not that you offer counseling, but the way in which
it is offered. I think that when you go back to what motivates
these women, what motives\them is having a healthy child, doing
whatever I can to help my child. If you counsel around the fact
that this test is not for them, but just so Dr. Heagarty can
know that when the two- month old comes in with a fever, that Mom
was HIV positive; therefore, that baby needs to be admitted
faster than maybe the six-month old.

221

 

 
 

 

When you explain to Mom what the test will mean for
them, but you say that the test is really for the pediatrician,
because you want the best for that baby that you can give. I
have not had one woman refuse testing.

DR. PRIMM: Dr. Wofsy and Dr. Padian, and the panel
before you all, suggested that people are more receptive to peer
counseling. I would like to extrapolate from that and think that
people would be more receptive to you because of your color, in
counseling certain people.

I don’t know whether Dr. Heagarty or Dr. Minkoff, or
Dr. Finnegan would have the same response that you get. That’s
what I am talking about.

DR. MITCHELL: That may be so, except in Boston. Half
of my population is White.

DR. HEAGARTY: I will pick up on that. I don’t think
the issue of color is relevant, as long as you have somebody who
cares and who can relate, and be non-judgmental. I don’t think
this is a Black-White issue quite frankly.

I have a young woman who is a little Jewish girl from
Brooklyn who has done a superb job. The reason she has done a
superb job with these ladies who are drug addicts and pregnant
and so on is that she cares about then.

DR. PRIMM: I think that too, Dr. Heagarty. It is
because of people’s association with you. I think you have a
long history of developing individuals who care. Anyone who
associates with you cares. That’s a fact. Dr. Finnegan?

DR. FINNEGAN: I just wanted to comment that in
Philadelphia we also have a 50 percent White population, and a 50
percent Black in our clinic for the pregnant addicted women.

Furthermore, last year when we thought we were
aggressive about dealing with HIV infection, we got about 85
percent of the mothers to consent to have the test. This year we
have 100 percent.

They really are interested in knowing and helping their
children.

I wanted to say something about your methadone
comments. In whatever treatment we give to human beings today,
we always have a -- I guess we have a side effect. Methadone has
a number of side effects.

But the positive effects of methadone, especially in
this population of pregnant addicted women, and now more so with

222

 

 
 

 

the HIV infection -- methadone is extremely important, and the
benefits markedly override any risk that we know of at this point
in time. | |

I would like to just end my comments by encouraging
also that you, within this population, that you consider doing
research in a very rapid way. I had suggested that in my formal
statement.

I say this to you because we need the information fast.
I think that we need to do what are called collaborative studies.
We have done them before, with regard to mothers and babies, and
we need to do them nov.

We need to get information very rapidly, within a year
or two. The only way to do that is to collaborate throughout
cities of high risk.

We also need to look at those cities where the
incidence is not very high, so that we can see what can be done
with regard to prevention. I would encourage that you look at
that carefully, as well as the treatment issues that we have
discussed here today. /

|
DR. PRIMM: Dr. Lilly?

DR. LILLY: I just have a rather peculiar comment. You
have been dealing -- you panelists entirely, the panel preceding
you mostly -- are dealing with heterosexual populations, and you
are able, in those populations, to counsel people who will not be
abstinent in their behavior about alternatives to abstinence in
order to try to avoid sexual transmission.

My comment is simply that there is an apparently
successful attempt to take that possibility away from the
homosexual community. Since one of our great moralizers has
just proposed an amendment to the budget, which does not allow
any organization that encourages homosexuality directly or
indirectly -- indirectly being a very important comment -- to
receive federal funds for any purpose whatsoever.

\

Not just for that education that they are trying to do,
but for any other purpose for which they might need federal
funds. I am sort of wondering what would happen if that
particular approach were extended to the heterosexual community,
who practices sex outside marriage, and which is therefore, in

many people’s eyes, immoral and should not be supported.
If you were not able to counsel people that way, I am

wondering where we would be, and where we would be in a few years
from now.

223

 

 
 

 

DR. MITCHELL: I think what you are seeing from this
panel are people who are on the front lines, and deal with the
realities. If you look at what’s been recommended on a national
basis, we are supposed to tell women -- just like we are supposed
to tell adolescents ~-- don’t have sex.

Use a condom. Be monogamous. Don’t use drugs. Those
same sort of issues. But we are reality-based. And we know that
we will not make any inroads at all into this disease if we set
up moralizing and give those messages.

Because we have been dealing with this population even
before AIDS became an issue, we know that doesn’t work. That’s
why we have not even adopted it.

DR. MINKOFF: I just wanted to say that I think that,
independent of any of our morality, there is a sense of reality
that is somewhat beyond that. Although we may agree that, as I
Said, abstinence outside of marriage is ideal, the history of
public health endeavors are replete with the failures of
proscriptive advice alone.

I don’t know if Dr. Curran gave his famous anecdote,
about a true story in World War I, when the British expeditionary
force was stationed outside of Paris for six weeks, and they were
about to go on leave.

The medical officer went to the general and said,
General, there is gonorrhea and syphilis in Paris, and
penicillin won’t be invented until the next war; what are we °°
going to do? The letter was sent to all the men who went on
leave that said, you will be tempted by the wine and women of
Paris, you will resist all temptations. Do your duty bravely;
fear God; honor your king. They all marched off to Paris with
their letters of the proper morality, and six weeks later 20
percent had venereal disease.

For the rest of the war, they went with their letter in
one hand and a condom in the other. The incidence of venereal
disease dropped from 20 percent to three percent.

We may believe that abstinence is the best, but as I
said before, unless you want to make the alternative a capital
offense, you have got to empower people with something else aside
from good behavior.

DR. FINNEGAN: This is human nature, and human nature
is here to stay, and so are sex and drugs. We are not going to
stop it, no matter what we do. Not only in this population, but
in all of you.

224

 

 
 

 

I would venture to say that most of the men here are
refusing to wear condoms as well. Middle class America isn’t
interested. Our patients aren’t interested. Therefore we have
got to come up with other methodologies.

From the standpoint of drugs, I have just been at the
White House Conference for a Drug Free America, and everyone is
trying very hard to free America of drugs. But we will never
free it entirely of drugs because human nature loves drugs.

We all like to feel high, and not all of us can have
some of the natural highs of living which includes service,
praise and love. More particularly, the women that we care for
cannot do that.

They don’t have a chance to serve anyone, because they
can’t help themselves. They are never praised, because no one
praises a pregnant addicted woman. Furthermore, they are not
loved.

They haven’t been loved as children. They come from
broken homes, where there has been drug addiction, where there
has been alcoholism, and where there has been mental illness.
Therefore they have not been loved, they have been abused
sexually and physically. Therefore drugs for them are their only
way to survive.

We have got a major problem, and it is here to stay.
Whatever inroads we can make with some of the suggestions that we
have here are important, but it is here to stay.

DR. PRIMM: I want to thank Dr. Walsh for his patience.
Dr. Walsh, you have the next question.

DR. WALSH: I say, as far as the habits of the
Commission, you’ll never know.

(Laughter. ]

DR. WALSH: I think that you should be aware that the
Commission -- we’re totally realistic. I think that we
understand that those of you in the trenches are frustrated
sometimes with what you consider moralizing, and get a little
pontifical.

It isn’t moralizing. I think we are coming up
sometimes with the fond hope that, my God, can the situation get
a little better -- even if it is two percent, Dr. Minkoff, or
three percent better -- it is a little better. Above all, we
don’t encourage what is considered unusual behavior, or that we
don’t encourage people on drugs, and don’t encourage these
habits to get better.

225

 

 
 

 

But I want to get practical here. I was impressed by
Dr. Heagarty’s feelings from the very beginning, and yesterday we
had the presentation made to us that we might have as many as
10,000 to 20,000 children before too long.

Of the two questions that I really have, one is
obviously -- it all gets down to money. It gets down to the
apportionment of resources. We have had some difficulty in past
presentations here to determine where the trickle-down effect is
not taking place.

The man from NIDA, for example, told us yesterday the
states weren’t even requesting the budget he has. Where can the
improvement be made, from the federal level, the state level, the
county level, to make the resources available to take care of
these children?

As far as I am concerned, there is no one who would
resist trying to help these children, first of all.

The second thing I wanted to ask, so that I won’t haye
to phrase this again, is in providing options, Dr. Finnegan, Dr.
Mitchell, all the options that are available, are you running/ any
risk under existing policy of losing federal support in some /of
the steps you may take with some of these patients? Or getting
opposition from groups who would not believe in the exercise| of.
the ultimate option early in pregnancy?

DR. HEAGARTY: Let me take the first question, and ‘then:
I will yield to the other ladies on the second. °

I have spent considerable time and meditation about
the problem of financing, if you had all the money in the worl
what would you do? I happen to know, because we have done a |
study of the hospital, the cost of hospitalization for the first
37 children in Harlem. For those 37 children, some 6000 hospital
days over a period of several years, represented about $3.3
million, with a very wide range in per diem rates. But more
particularly, that 30 percent of those days and 20 percent of the
cost was accounted for by what would be clearly medically not
necessary days.

So since I’m pretty sure that’s the only data around at\
the moment, my guess is that among the population of children,
about 20 percent of the total in-patient cost could be put to use
in some better way.

In terms of the total allocations and where is the
lesion, I am unclear. Part of the lesion, it seems to me, is
that in our social programs, be it Medicaid, Medicare, WIC,
what-have-you, we have constructed such a bureaucracy that only

226

 

 
 

 

the most socially organized could enroll, but we are dealing with
the most socially disorganized. And then we blame them because
they don’t show up for their face-to-face, or they don’t go down
to 37th Street and stand in line and spend all day waiting to
enroll in this or that or the other thing.

My staff probably spends as much time trying to |
manipulate the bureaucracy in the interest of our patients as
they do in delivering care directly. Sol would say that as a
first premise, we might entertain the possibility of developing
or reforming the programs we have, so that we don’t have phony

queues and barriers, because you can’t use then.

Secondly, we are going to have to do some institution
building, I believe. That is to say, I think that we are going
to require small respite homes, and inventive arrangements of a
variety of types, not only for the children who are homeless, but
also for the children and the families of those children who are
taking care of then.

Think of it: I have 70 or 80 people who are poor in
Harlem, with children who have AIDS, who may or may not be sick
themselves. They may very well be able to take care of the child
for most of the time, but they may need a day off, they may need
to go into the hospital themselves. And at the moment the only
alternative is to come on my ward.

So I think two things: We are going to need additional
resources for certain, but we are also going to need some
institutional reconfiguration, and I wish somebody would fix the
bureaucracy.

I mean I couldn’t get on Medicaid. Dr. Walsh, if you
had to go get on Medicaid right now, it would drive you crazy.

DR. WALSH: I know. And you could lump the cocaine and
the AIDS children virtually into the same package.

DR. HEAGARTY: Yes.
DR. WALSH: I would think so.
DR. PRIMM: I want to close out the hearing now with --

DR. WALSH: Wait, she didn’t have a chance to answer
the last question.

DR. FINNEGAN: Give us a chance to answer the last
question, which is a vital one. Dr. Walsh asked about our
options, and whether we would potentially lose federal funding
if we took those options.

7 227 -

 

 
 

 

Dr. Walsh, I have had to learn a lot since my
graduation from medical school 23 years ago. My name is
Finnegan, and my children are 26, 25, 24, 23, and 21.

[Laughter. ]

DR. FINNEGAN: The word "condom" was not a word that I
knew of, nor’ the word "abortion." But as I and Dr. Mitchell and
Dr. Minkoff and many, many of us have learned that there are
modalities that need to be considered. In my situation as a
pediatrician who speaks to the mothers, of course, my discussions
with them are the options. I don’t have to perform the
procedure, and in our hospital, we have referral mechanisms to
Planned Parenthood whereby the mothers, if they wish to
terminate the pregnancy, may do that. I don’t think that would
influence me from that standpoint of funding.

But I am concerned that it may, and so that we have
contradictory situations, when we have, as you have heard the
picture, and then we have the Surgeon General who is advising
that options are important as well. So we have to get together
and realize our common goal.

DR. MITCHELL: Whenever I address this issue, I say
it’s a double-edged sword, and I’1l explain to you why. One,
first of all, as you know, no federal funds can be used for
abortion services. There are only 14 states in the country who
utilize state funds. Nine of those states have fairly
unrestrictive services, and five others have more restrictive
services.

The other states do not provide state funds at all for
abortion services. Some, in the case of the life of the mother.
And how that gets interpreted is why I call this issue a
double-edged sword.

Again, 80 percent of the women are women of color, and
they are poor. Eighty percent of the children are children of
color, and they are poor. There are people in this country who
say that these women should be aborted and sterilized. You can
find references to this in many every-day journals. a

What I do, I think what all of us do, is fight for that
woman’s right to make her own choices and to determine for
herself what her options are. So we have to be very clear that
while services and options need to be widely available, we also
have to be cautious as to how we put forth our recommendations.

DR. PRIMM: Thank you so very much. I want to thank
the panel. Admiral Watkins?

228

 

 
 

VL

}

CHAIRMAN WATKINS: A couple of quick questions. Maybe,
Dr. Heagarty, you could answer this, or any of the other
panelists. Where do we stand on obstacles to enhancing foster
care? What are the things that this Commission, might do in that
regard? Are there steps that we could take to meet the demand?

DR. HEAGARTY: The issue of foster care is a
complicated one, I think in part because the sociology of the
family has changed so that there are not large numbers of women
at home who will be a ready reservoir of foster mothers. I think
that’s what is going on. And we have this additional huge
burden, which has appeared in the last year or year and a half.

I would think that probably some relooking at the methods and the
format of foster care, that in that instance as well, there is
often bureaucratic: barriers to becoming certified as a foster
parent, for example. That’s an attempt of government to make
sure that no rascal or child abuser becomes a foster parent, but
it can log up the works so that you can take as long as several
months, four or five months, to get yourself certified as foster
care parents.

So I would think that a relook at some of the
institutional arrangements or bureaucratic arrangements in the
management of the system.

‘And secondly, I would think that in some instances
additional stipends for the parents, the foster care parents.

And thirdly, I think we are going to have to --
reluctant as I am to say it -- begin to look at small group home
placements for some groups-.of children for long or short periods
of time.

CHAIRMAN WATKINS: The National Commission to Prevent
Infant Mortality, to which I believe you were a technical
advisor, Dr. Heagarty, makes some very sobering statements. When
we look at the projected perinatal AIDS cases’ in the year 1991,
it’s frightening, and is not gétting the kind of attention and
that some other aspects of the infectious disease are getting.
And the point is made in this report that the health care system
as it is structured today cannot meet the diverse needs of
infants with AIDS. Unless there are systemic changes and a
financial structure to pay for this care, the picture will only
get worse. |

DR. HEAGARTY: Although it’s a scandal that we don’t
have prevalence data, I really don’t know what the prevalence of
this virus was among the pregnant women last year as opposed to
this year, but my guess is that that is going to increase, and I
don’t see any evidence of the cocaine problem as decreasing. And
those two variables together are displacing huge numbers of
children.

229

 

 
 

 

CHAIRMAN WATKINS: But you must have given some
thought, the three of you particularly, you represent very
important hospitals and regions. It would be very helpful to
us if you could make specific recommendations based on your
experience with these children, because this will be one of the
focuses of our attention here over the next couple of months,
particularly as we move to our care hearings. We will have some
care hearings in the middle of January. It would be very helpful
to us to receive a letter on what you think some of those large
obstacles to providing pediatric AIDS care will be.

I think, as Dr. Walsh says, it may well be that
pediatric AIDS could be a major catalyst to get the American
people’s attention. There doesn’t seem to be controversy when
it comes to infants and mothers. And out of this understanding,
maybe many other things can come, including the IV drug abuse or
drug abuse in general and its impact on this situation.

We talked a little bit about foster care, and an
alternative to the classic concept. Are there other new ideas
that you have that we could explore?

So I’d like to ask you for your follow-up comments in
writing if you’d be willing to do that, and we’d like to get
those back within the next few weeks, to enhance the value of
our care hearings.

And with that, I would like to thank all of you very
much for coming. This has been a special hearing for us. I
particularly appreciate the incredible case history that you told
us, Dr. Heagarty. It has made a big impact on the Commission.
It gets our adrenalin flowing, and our empathy for the tremendous
work you all do in this field. So we are proud to have you as
witnesses today. We know the work that you’re doing. We share
some of the frustrations with the bureaucratic hurdles that you
face, and we want to knock some of those down, and we need you to
help us do it.

So thanks very much for coming today. We will recess
now until 1:00 o’clock.

(Whereupon, at 12:23 o’clock p.m., the hearing was
recessed, to reconvene at 1:00 o’clock p.m., this same day.]

wee

“sas

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AFTERNOON SESSION
[1:12 p.m. ]

DR. PRIMM: I would like to call the afternoon hearing
to order, and welcome our panelists, Mr. Mills, Mr. Besteman,
Dr. Newman, Dr. Kreek, Dr. DeLeon and Ms. Coletti. Welcome.

The panel this afternoon is Risk Reduction and
Treatment. Our first speaker is Mr. Joseph Mills III.
Mr. Mills.

RISK REDUCTION AND TREATMENT

MR. MILLS: Thank you, Dr. Primm, Admiral Watkins, and
the Committee.

I want to tell you that I feel, after listening this
morning to a number of the panelists testify, that some of what I
will be saying might be duplicative, but nevertheless I feel it
is important to stress some of the same issues again, and it has
to do primarily with the need to expand the nation’s treatment
capacity for the treatment of alcohol and other drug abusers as a
strategy for dealing with this AIDS epidemic.

I serve as the Director of the Indiana Division of
Addiction Services for the Department of Mental Health, and I am
appearing today as a representative on behalf of the National
Association of State Alcohol and Drug Abuse Directors, NASADAD.
It’s a not-for-profit organization that has as its membership the
state alcohol and drug abuse directors of the 50 states and four
territories.

Increasingly, demands for drug abuse services are being
made by thousands of individuals who are intravenous drug
abusers. Many other drug-dependent persons are seeking
treatment aS a means of preventing their infection with HIV.
These same individuals, however, often are informed that
treatment slots are unavailable, and that their names will be
added to a waiting list of approximately three to six months
duration.

Currently our treatment programs are only reaching
approximately 10 percent of those who need treatment. The
National Association of State Alcohol and Drug Abuse Directors is
currently participating in a contract from the National Institute
on Drug Abuse,( NIDA). Under this project NIDA supports the
National Capital Systems, Incorporated, in Falls Church,
Virginia, and NASADAD in the development of state policy options
and recommendations on critical issues and needs of the drug
treatment system in addressing and combating this problem.

231

 

 
 

 

NASADAD is involved in planning and implementing six
seminars during the 1987-88 year that bring together state
alcohol and drug abuse directors, other state staff, experts from
the Centers for Disease Control, as well as others with expertise
in the area of AIDS prevention and treatment. The
recommendations from these seminars will be distributed to all
state alcohol and drug abuse agency directors, as well as to
interested governors, state and federal legislators and executive
branch agencies.

What I would like to do today is share with you some of
the issues discussed in the first two of those seminars, and some
of the recommendations that have emerged.

I think there is no doubt that currently one of the
fastest growing populations of those who are contracting AIDS is
the group of intravenous drug abusers, and the heterosexual
population that is predominantly made up of that group. Much of
the increase can be attributed directly to IV drug use and
subsequent high risk sexual behavior. You might have heard that
the Surgeon General C. Everett Koop recently said that the bottom
line is if you are going to contain AIDS in the United States,
you have got to contain IV drug abuse. The sharing of needles
and syringes is a prime risk activity associated with the spread
of HIV, and the sexual partners of those who may have contracted
HIV through needle-sharing activities are also at high risk.

. Additionally, and I think given less attention, but
nonetheless important, is the use of alcohol and other drugs as a
contributing factor associated with the risk behaviors that
transmit HIV. Those substances tend to reduce one’s inhibitions
and may cause one to act irresponsibly in the short term and
participate in high risk behavior, especially high risk sexual
behavior. For these reasons, prevention of alcohol and drug
abuse, not just IV drug abuse, is important in preventing the
spread of AIDS.

Increasing drug treatment capacity is something you
have already heard about, and I would like to reinforce it. It
is one of the immediate and very pragmatic means by which the
problem of HIV transmission can be reduced. Treating more IV
drug users, treating more alcohol and other drug abusers,
bringing them into treatment where they can be educated and
encouraged to change their behavior, is highly recommended by
our association.

Drug abuse treatment programs in many of the areas of
the country, however, are already operating at capacity and, in
some cases, above the stated capacity, with inadequate resources
for expanding drug treatment services. AIDS has fundamentally
changed the nature and scope of drug abuse treatment and has
introduced new areas of emphasis within drug treatment and

232

 

 
service programs. For one, just the management of the physically
sick and dying clients is something that is new to many drug
treatment programs across this country.

While we have worked with drug abusers over the years
and talked about the imminent dangers of dying from their
behavior, the very real and present danger of dying and the
volume of that is something that many of our alcohol and drug
treatment programs are only beginning to come to grips with.
Effective treatment includes assisting and assessing needed
health care for patients and families. It may involve on-site
provision of primary services or referral to the health care
network for those IV drug abusers who are women of childbearing
age, pregnant, or mothers. Drug treatment programs need to
arrange, provide or develop such services as prenatal and
postnatal care, family planning, and specialized child welfare
services.

Effective treatment should also include particular
attention to minority cultural and women’s issues. It should
involve spouses and/or significant others wherever possible.
These additional aspects of treatment tax the already
insufficient resources available to treatment programs. Still,
drug treatment offers the best prospect for reducing high risk
behaviors in the transmission of HIV among needle substance
abusers, their sexual partners, and the perinatal transfer to
newborn children.

The cost of treating drug abuse is ultimately far less
than the cost of treating AIDS. Federal and state officials need
to review statutes, regulations, and funding mechanisms from the
AIDS perspective. Modifications may be necessary so that the
drug abuse treatment system can develop and provide quality care,
not short-term, quick-fix solutions.

On October the 7th and 8th of this year, NASADAD held
its first AIDS policy seminar here in Washington, and it focused
on the identification of methods to increase treatment capacity
for needle users to reduce the spread of HIV infection. You
have in your packet of materials in my testimony the complete set
of recommendations from that seminar, so I won’t go into them in
detail here, other than to highlight the few that you have in the
text. of my presentation, and that is placing a high priority for
new funding with the AIDS perspective for new treatment services
for alcohol and drug abuse.

State and federal resources should specifically address
the needs of those populations at highest risk of HIV infection
and AIDS, especially black and Hispanic drug abusers.
Comprehensive HIV reduction and prevention programs that include
education and counseling on high risk behaviors which may result
in HIV infection should be provided to all clients and their

233

 

 
 

 

families and in the alcohol and drug treatment system. Federal
constraints on the use of funds to construct, expand, and
renovate physical facilities for drug treatment must become more
flexible in order to respond to increased treatment needs.

The second seminar was held on December the 2nd and
3rd, and the topic of that particular seminar was AIDS Prevention
and Risk Reduction Behavior for IV Drug Users. Representatives
from the District of Columbia and 18 states attended.

It needs to be recognized that when we speak of risk
reduction, we are talking about changing behavior. There are
many elements involved in plotting a successful strategy for
assisting people to change their behavior. Education is one
component, and it should be an ongoing and persistent process,
but education alone cannot necessarily change behavior. Targeted
information, coupled with intervention and treatment, is more
likely to produce the desired behavior changes.

You heard this morning, and I would like to
reemphasize, that cultural differences may be significant in
behavior change education. The role of cultural expectations for
males and females in the fathering of children and in
childbearing may not yet be given appropriate consideration in
some of the efforts to produce change in sexual behavior among
heterosexuals, particularly those of minority populations.

The use of any contraceptive, and specifically the
barrier type, the condom, in conjunction with a spermicide does
not fit the traditional role in some cultures of the potent macho
man and fertile woman, one of whose primary purposes is that of
having and rearing children. This is a powerful factor when
considering that both black and Hispanic populations in our
society are hardest hit by AIDS. More than 50 percent of the
women with AIDS are black. More,than 25 percent of women with
AIDS are Hispanic. More than 90 percent of children with AIDS|\
are either black or Hispanic.

One specific recommendation developed at our most
recent NASADAD policy conference was as follows:

Recognition of cultural sex role expectations is
essential in the prevention of HIV transmission. Condom use
and other aspects of sexuality, intimate relationships, and
childbearing involve cultural value issues, and must be
approached with sensitivity.

Further, the prevention of sexual and perinatal
transmission of HIV may also mean working with sexual partners
and with children. A number of interim recommendations for an
HIV prevention and risk reduction strategy for federal, state and
local levels are listed on page 8 of my testimony. I am not

234

 

 
 

 

going to go through this, but I would only say that you will note
that most of these speak to the need for state alcohol and drug
agencies, such as mine, to accept more responsibility for AIDS
prevention. And I am here to tell you that we are willing and ve
are able to accept that responsibility.

We need, however, the additional resources
commensurate with the new task. Although only two of the six
NASADAD AIDS policy seminars have been held thus far, additional
seminars will focus later on such issues as confidentiality in
testing, the impact of AIDS and barriers to the minority
communities in getting treatment, existing and proposed
legislation, emerging case law and a number of other issues that
you will find in my testimony.

I would like to close by saying just say that you will
find that the 50 states and the four territories state alcohol
and drug abuse agencies are keenly interested in this issue, want
to be a partner in the multifaceted approach that this nation is
going to have to take to address this AIDS issue, and of all the
things that I hope that you are hearing today from me in
representing NASADAD is that we want to be that agency, that
organization that you can depend upon to be a partner in this
effort. Thank you very much.

DR. PRIMM: Thank you, Mr. Mills, for your remarks.
And I want to thank you particularly for confining your
presentation to about seven or eight minutes, and it was
excellent.

I want to remind the panel, I have some lengthy
testimonies here in writing, that if we could, we try to confine
it to about five to seven minutes, so that we will have ample
time for questioning in the end. Our next speaker is Mr. Karst
Besteman, the Director of the Alcohol and Drug Problems
Association of the United States of America. Mr. Besteman,
please begin.

MR. BESTEMAN: Thank you, Dr. Primm. We appreciate
the opportunity to appear here before the Commission.

I represent a voluntary non-profit educational
association made up of four classes of members. We have the
state agencies from whom you have already heard. We have private
nonprofit and profit making treatment and prevention agencies,
individuals who work in the field as counselors or board members
or administrators, and then we have a council of state
associations. So it is an extremely broad-based association, and
during the course of the last couple of years, the issue of AIDS
has gotten more and more important in our internal discussions.

235

 

 
 

 

t
é
i

, One of our purposes is to come together and try to
devise and create rational policy. This area has been very
difficult for us to come to consensus, but we have several things
that we think are important. I will not repeat some of the
specifics that have already been given by Mr. Mills.

We are extraordinarily concerned that there be proper
education and training to the drug and alcohol treatment staffs.
We have found in talking with our agencies and with our members
that staff members are extraordinarily uncomfortable and
sometimes ill-equipped to deal with the subject of sexual
behavior and the potential for death that AIDS represents, which
you have to deal with in order to be able to properly counsel
patients.

We recommend strongly that staff training, staff
counseling, and patient training and counseling go hand in hand,
and that voluntary testing for both staff and patients be
available if they desire it. Our assumption is that if a patient
says they have been sharing a needle or been using a needle,
certainly in the eastern part of the country, but it’s a simple
assumption to say there’s a probability of infection and don’t be
ignorant and allow our personal denial to cause us to act ina
high risk manner.

We are also concerned that the drug abuse treatment
system, was raised, fostered, structured, over the last 15 to 20
years in an era of fiscal constraint. It has never had plush
funding. It has had extraordinarily lean staffing, and the pay
scale within the system is not great.

When you take a system that is barely able to carry out
its primary function and now see the trend for turning that
system into the hospice system for the addicted AIDS patient, and
see that extra demand with no extra financial resources, you
begin to worry about whether the system can hold up under this
demand.

We think in some ways the request that we become
virtually a hospice system for patients that we are already
serving has some validity. Certainly some of the therapeutic
communities have been doing an excellent job, but to require that
within the original intent and structure of that system, and the
original funding and staffing pattern is unrealistic, and you are
asking for the system to go down.

We want the federal government and state governments to
be clear on the fact that the treatment of drug addiction is a
prevention strategy for the spread of AIDS and we are very clear
that we think it is. There has been a great deal of confusion in
meetings sponsored by the federal government, in which I have
participated, as to whether the priority is drug abuse treatment

236

 
 

 

t

or the priority is the control of the spread of AIDS. Now I
don’t see them as necessarily mutually exclusive, but if you are
going to devise an action program, you have got to decide which
of those is primary, because there are different strategies and
tactics that will evolve from that assumption, and at least to
date I do not believe the federal government has sorted that one
out themselves. I can’t speak for the state governments because
I am not that familiar with all 50.

It is interesting to me that the greatest effort at
training staff and informing treatment agencies around the
country has been spearheaded from the private sector. There are
other associations, there are state associations that have been
absolutely key in making sure that professionals in the field are
aware of what their responsibilities are, and I am pleased with
that. I don’t think every effort has to be laid on the federal
government, but the fact of the matter is it’s been effort piled
on top of already structured programs, and it can’t be sustained |
indefinitely without some care and keeping from public funding.

There is another assumption that goes on in many of our
conversations that bothers me. Frequently in conferences, one
hears the assumption that "we were able to change the behavior in
the homosexual communities, so that the spread of the virus in
the homosexual community is flattening out. Such behavior change
is impossible among drug addicted people."

I have done field research with the addicted and.
non-addicted ex-addicts, going back into the late 1950s and
1960s, and I am convinced from personal experience that addicts
can change their behavior, whether or not they change their
addiction. =

In other words, they have certain life values and a
certain culture that will impact on them. They are subject to
‘some of the same nudges in terms of consumer behavior that those
of us who are not presently addicted respond to, and they are not
that different from you and I. And to speak of them as being
unable to change, I think it a very serious error and
assumption, and it stops us from doing a lot of good marketing
and outreach in getting these patients to respond and come for
treatment.

We are very supportive of research, with a very large
"hut." We cannot understand why there is no targeted money for
treatment specifically around needle use and needle sharing. I
have stopped using the term IV drug use because I have run into
people who share needles who are body builders, who said because
they only shot in the arm, they would share the needle because
they weren’t using it intravenously, therefore they didn’t need
to worry about it. So I use needle sharing as a phrase, any
needle sharing. ;

237

 

 
 

 

I would hope that we would consider with caution
mandated legally imposed restraints such as civil commitment,
which have already been discussed in this city, about how to get
addicted seropositive patients into treatment. We haven’t yet
opened up the treatment system so that people who want it can
get it. I don’t see the need for going immediately to mandated
treatment.

Finally, just four quick recommendations:

I would urge the Commission to make a strong statement
of priority for treatment capacity as part of the strategy to
combat the spread of the virus.

I would urge great emphasis on noncoercive strategies,
particularly in terms of outreach and marketing. You can use
either term, depending on whether you come from the public or the
private sector.

I would also urge that we not put all of our eggs in
one modality’s basket. All heroin addicts, all needle sharing
people are not alike. One modality will have more impact than
another, but to go exclusively with one modality, I think would
be an error.

And finally, I would hope that the Commission could see
its way clear to acknowledge that in spite of its primary concern
about AIDS, that it is prudent national policy to address
addiction in its own right, because we have a tendency in this
country to only come to grips with that about once a decade. And
addiction is a chronic, relapsing condition that needs constant
attention, and I would hope that you would make note of that in
your report. Thank you.

DR. PRIMM: Thank you very much. Our next speaker will
be a little bit out of order. Dr. Mary Jeanne Kreek has chosen
to go next. Dr. Kreek.

DR. KREEK: I am very pleased to have the opportunity
to address this group. I’m a physician and a scientist and will
speak on some of our research findings that have bearing on the
AIDS and drug abuse issue.

I also speak as the past Chairman of the Committee on
Problems of Drug Dependence, a long 60 year old standing
organization that addresses scientific and public policy issues
related to chemical dependency.

I would like the opportunity, if I could, to show a few
slides that I think will bring out some points that are extremely
important. Clearly, we need treatment. We need increased access

238

 

 
 

to treatment. We need increased quality of treatment. We need
increased scope of treatment, and we need increased numbers of
staff and sites to carry out that treatment. Research,

education of both the public and those who provide services are
essential, and also, clearly, funds to support all of these
efforts. -

There are now some 1 million heroin users on a regular
basis in this nation, 500,000 of whom are hardcore addicts.
There are some 6 million regular cocaine abusers, of whom
approximately 8 percent use cocaine by needle. Therefore, there
are some 750,000 very severély impaired individuals and over 1.25
million who are moderately impaired.

DR. PRIMM: Dr. Kreek, I think that’s your second
slide.

DR. KREEK: That’s my second slide, but I/1l go on with
it to save time.

DR. PRIMM: No, let’s just put the first slide on. I
think it’s important for the Commission.

DR. KREEK: Alright. Maybe I can stand up there, if
you don’t mind, Mr. Chairman.

DR. PRIMM: Please, go ahead. If you’d like, if that
would be more comfortable for you. Why don’t you go over and
take this mike, Dr. Kreek.

DR. KREEK: Thank you. That way I can progress my own
slides. I think that’s going to be easier.

We’ll go back, and I want to show this one slide. Two
million have used heroin at some time. Twenty-two million in our
nation have used cocaine at some time. A half million are
hardcore addicts; that is, daily multiple use of heroin for one
year or more, Six million now use cocaine ona regular basis.
Eight percent of these, as I mentioned, use cocaine by needle;
therefore, entering the pool of possible spread of the HIV virus.

The October statistics show that there are 42,000 cases
of AIDS in the United States, plus 11,000 in New York City, and
of these, 27 percent have intravenous drug use as a primary risk
factor. An additional 5 percent have parenteral drug abuse plus
bisexuality or homosexuality. Quick calculation shows that there
are at least 14,000 active AIDS cases now in the U.S. that have
been directly related to the problem of parenteral drug abuse.
Narcotic addiction is, as we have heard, a chronic relapsing
problem. Chronic narcotic use leads to tolerance; that is, need
for increased amount of drug first to get the euphoria or high
and later simply to prevent withdrawal.

239

 

 
 

 

Physical dependence, easily demonstrable by any
physician or scientist, occurs, and when the narcotic drug is
withdrawn a syndrome called the abstinence syndrome with well-
defined physiologic abnormalities occurs. This is dramatic for
three to four weeks; but, now the scientists at Lexington and
throughout the world have been able to document a protracted
abstinence syndrome; that is, abnormalities persisting up to six
months or more after cessation of any narcotic use. A
persistent drug hunger accompanies this abstinence and, in fact,
contributes to return to drug use.

Back in the mid-1930s our government instituted
mandatory treatment. Lexington was selected as the site for an
excellent program of both drug-free treatment and research for
specifically narcotic addiction. Most arriving at Lexington were
prisoners. Some were volunteer patients.

A variety of drug-free approaches, including individual
and group, psychological and psychiatric counseling were carried
out. Also, some pharmacologic attempts with short-acting
narcotics to treat addiction were made, but those were not
successful. When the person left Lexington at the end of the
period of sentencing and/or treatment, they were followed up in
an unemotional way, and the data from the 1936 to 1940 inclusive
period are shown here. When followed up six months to five and a
half years after leaving treatment, only 13 percent were
abstinent from narcotic drugs. Forty percent had returned to
narcotic drugs, and an additional 40 percent could not be found.

In the British system number two instituted in the late
1960s, heroin was used, but specific drug clinics were designated
to provide services for the heroin-addicted person. Follow-up
studies were carried out to look at what happened when people
completed treatment and became drug free. Again, 31 percent
were found to be free of narcotics one month to seven years
after leaving pharmacological treatment.

These data suggested to us and to many others that
there must be, in part, a metabolic basis for narcotic addition,
and parenthetically this may well pertain for alcoholism and
cocaine dependency as well.

Genetic factors undoubtedly ultimately will be found
which explain in part the differences in host response.
Pharmacology alone cannot account for addiction because if,
indeed, it did, once the drug use was stopped and the person
rendered drugfree, rehabilitation, psychiatric and sociologic
efforts are carried out, then one would not expect to see a
high relapse rate. This is not what happens.

240

 

 
Therefore, we propose that pharmacology may intersect
with physiology to lead to long-term persistent, if not
permanent, abnormalities in the hardcore narcotic addict. The
heroin addict must inject drugs several times each day, four to
six times, first to get a high or euphoria, and later simply to
prevent narcotic withdrawal symptoms. This, of course, is where
needle use, needle sharing and all the problems related to
exposure to AIDS as well as hepatitis B, delta and other problems
occur.

We proposed in 1964 with a group of Professor Vincent
Dole and the late Maureen Icewander that a pharmacologic approach
be attempted for the treatment of addiction, but this approach
would employ a new tactic; that is, use of a long-acting narcotic
which had not before been available for research in the 1930s and
1940s. This long-acting narcotic, methadone, was proven to be
orally effective. We now know that it has extremely high oral
bioavailability. It’s onset of action after oral administration
is slow and, in fact, if the correct dose is chosen, there is no
euphoria or high, no sleepiness and no narcotic effect; simply a
stabilization, a normalization. This drug allows one to treat on
a once-a-day basis with an orally administered drug, getting away
from needles, the lure of needles, the psychology of needles, and
to also provide a stabilized state.

We were able to draw a cartoon of the status of a
methadone-maintained patient by the mid-’60s. A person
maintained on a daily dose of methadone had no high, no
withdrawal symptoms and if, as you see with a small "h", heroin
was injected on a double-blinded basis, which was done as part
of a double-blinded research study at the clinical research
center at Rockefeller, no heroin effect was perceived. This
was because of the very high degree of tolerance and also
cross-tolerance developed when the stable oral dosing was carried
out.

Several years later when we had developed the
analytical technology, we could find that the plasma levels of
this long-acting opiate were very different from those of any of
the known short-acting narcotics, including Demerol, morphine
and heroin. This drug has a 24-hour half life with no high peak
level, thus accounting for the lack of euphoria, high or
somnolence effects when doses lower than the degree of tolerance
developed are given, but also a sustained effect which we now
know is in large part due to the hepatic reservoir and slow
release of unchanged compound.

The first consecutive 1,230 patients admitted to
treatment from 1964 to 1968 have been followed up. Sixty-six
of these voluntarily remained in treatment four to eight years
later. Of those who left treatment, 5 percent were dead. Of
those in treatment, 82 percent were productively employed in

241

 

 
 

 

work or in homemaking. However, in 1973 the first federal
regulations were promulgated, and one of the most unfortunate
aspects of those first regulations was mandatory detoxification
rendering the individuals drugfree within two years of entry into
treatment.

Only with special dispensation were patients allowed
to stay in treatment for more than two years. This had a very
significant effect, as seen here. Some 55 percent in a later
follow-up study had been discharged from treatment.
Dispensations had been requested and achieved for 37 percent,
and those patients remained in treatment.

Parenthetically, we are now doing a follow-up study
of patients in continuous treatment for 20 years or more with
no deleterious medical side effects found at this time. Of
those who had been discharged voluntarily or involuntarily,
when follow-up studies were carried out one year or more after
discharge, only 31 percent remained abstinent from narcotic
drugs.

Therefore, three studies in three parts of the world
in three different eras have shown that only approximately 30
percent of hardcore former narcotic dependent individuals,
the most severely impaired, are able to stay narcotic free
irrespective of superb approaches to treatment.

_ Approximately 150,000 have been in methadone treatment.
Approximately 100,000 are in treatment. A good program now still
can retain up to 80 percent; a not-so-good program, around 55
percent. What is good? I will quickly say good is a broad staff
with counselors, physicians, nurses, recovering persons all
working together, employing the best of drug-free technology
along with pharmacologic technology.

"Caring", a word which we cannot scientifically
quantify, is essential for a good clinic. Even the worst
clinics, however, retain approximately 55 percent of subjects.

Heroin use after six months of stabilization and
treatment persists in less than 10 percent of those in chronic
steady dose methadone treatment. This was shown in the 1960s,
the 1970s and, most recently, in the 1980s by Dr. Ball, now with
NIDA.

However, relapse or recidivism following cessation of
treatment is 70 to 80 percent. The actions of maintenance
treatment with this long-acting opiate, methadone, prevents
withdrawal symptoms, drug hunger, and blocks euphoria from other
injected narcotics. This mechanism of action, long- acting
narcotic provides profusion of the opiate receptor sites ina
steady state fashion. I underscore this.

242

 

 
 

Short-acting narcotics have never worked in the
treatment of narcotic addiction with the small exception of a few
such as Halstead, who injected narcotics every one to two hours
and, in fact, created a long-acting narcotic in that way. Only
a long-acting opiate has been effective.

DR. PRIMM: Dr. Kreek, a lot of the Commissioners would
not know who Halstead was, and a lot of them may not know, also,
when you talked about methadone substitute being cross-tolerant
with other narcotics, may have thought it might have been
effective for, say, cocaine or other narcotics.

DR. KREEK: I’m glad you brought up both those points.
Professor Halstead was one of the great leaders of American
medicine, a great surgeon at the Johns Hopkins University around
the turn of the century who, himself, was morphine dependent.

He was able to self-maintain his problem and remain
effective but by very, very frequent injections. The majority of
narcotic addicts with short-acting narcotics use are not able to
do this. The long-acting properties, therefore, are essential
for the steady maintenance. However, an opiate or opiate, as is
now the correct term to be used, such as methadone, this
long-acting opiate may be used to treat only narcotic, meaning
heroin, Demerol or morphine addiction.

Since one-quarter to one-half of heroin addicts have a
second or third chemical dependency, including alcohol, cocaine
or benzodiazapenes, valium and its cousins, it is essential to
employ concomitantly drug-free techniques and pharmacologic
techniques for this whole treatment of chemical dependency, which
I believe is essential to be done to prevent further spread of
AIDS to the heterosexual population to children as well as to
other young men and women themselves who may become drug
abusers.

The medical status of people at time of entry, whether
it is to chronic methadone treatment or drug-free treatment is
very devastating. Eighty to 95 percent have evidence of
hepatitis B, another disease which kills, although it has never
had the attention given to it that HIV now is.

A second scourge, hepatitis delta, is now upon us.
Identified in the late 1970s in Europe, now spreading throughout
U.S. major cities almost exclusively in the parenteral drug
abusing population, not to the extent at all however that
hepatitis B and AIDS has spread in the homosexual population.

Hepatitis delta is dependent on hepatitis B for causing
infection. When combined, it leads in a high proportion of
cases to rapidly progressive liver disease and death and, in

243

 

 
 

 

some cases, to formative hepatitis and death. In some of our
clinics, we are seeing almost as many cases of death from
hepatitis delta as we are from AIDS at this point in time.

Immunologic problems are seen in 75 percent of heroin
addicts. I think this morning you had some questions about
immunologic effects of opiates. It’s very difficult to tease out
in clinical studies because of the high prevalence of injection
of multiple foreign substances causing a situation not unlike the
Freund's adjuvant-treated rabbit; that is, a rabbit who’s been
treated to raise antibodies to a variety of substances. Also,
narcotic addicts on the street using needles have many diseases
that cause a rather diffuse spectrum of immunologic
abnormalities.

Altered endocrine function is also the rule in hardcore
heroin addicts with suppression of two crucial aspects of our
normal endocrine functioning. The brain controlling the
pituitary and, in turn, the adrenal gland, which is our main
response to stress, is suppressed during heroin use and during
withdrawal becomes overactive. The brain pituitary gonadal axis
is also suppressed, leading to relative hypofunction in the
hardcore heroin addict.

The numbers of babies born to heroin-addicted females
is very low considering that most serve as prostitutes to raise
money and rarely used protection prior to the HIV epidemic.
During chronic methadone maintenance treatment, we and other
groups have shown that normalization occurs with restoration to
normalcy of this crucial stress axis, the hypothalamic pituitary
adrenal function with normal endorphin levels reappearing during
stabilized steady dose treatment. Similarly, reproductive
biological functions return toward normalcy.

Over 75 percent of heroin addicts seeking treatment
have abnormalities of B cell function, our immune system cells
that make antibodies. The numbers of persons with abnormalities
and the degree of abnormalities decrease with time in stabilized
methadone treatment.

T-cell function, our fixed cells or our cells that
respond to other kinds of insults and are a very crucial part of
our immunologic system, also are abnormal in heroin addicts and
begin to be restored towards normalcy in function during chronic
treatment. In a study which we will soon present, we will show
that the natural killer cell function, a very crucial first line
of defense and which becomes quite lowered in most heroin
addicts, the activity of these natural killer cells returns
towards or to normalcy in the stable dose methadone-maintained
patient, and extremely important, very new finding.

244

 

 
 

| _We now know something else devastating. The hepatitis
delta markers aré, in fact, increased in drug abusers on the
streets, as I have mentioned, but in that drug abuser who now
develops full spectrum AIDS disease, the person can no longer
make antibodies and becomes increasingly infectious.

Finally, I think the most important study possibly, to
mention briefly, is that in 1983-84, we looked at parenteral drug
abusers in the streets of New York with Dr. Donald Des Jarlais,
whom you heard yesterday from. We then looked at former
parenteral drug abusers who had been in methadone treatment, most
of whom had entered after 1982 when the AIDS epidemic had already
hit New York City, and then we had the opportunity to look at a
group of highly controlled former narcotic addicts who had
entered methadone maintenance treatment at two clinics at the New
York Hospital Cornell Medical Center prior to the epidemic
hitting in 1978.

DR. PRIMM: Dr. Kreek, you’re blocking the screen.

DR. KREEK: In this population -- I do not wish to
block that number -- less than 10 percent of those who had
entered effective treatment, including both methadone maintenance
and drug-free approaches put together, less than 10 percent had
antibody to HIV. Less than 10 percent were infected, even though
some of these had occasionally used a needle primarily to inject
cocaine, and, in fact, the only positive results were found in
that group. We extended these studies with a series of patients
from Beth Israel, and the print is a little bit small, but in
another subgroup who had been in one of the wards of the clinic
at Beth Israel Hospital and had entered treatment again prior to
1978, only 17 percent were HIV antibody positive.

Therefore, I think when the streets were showing 50 to
80 percent HIV positivity, and we could show that those who had
entered effective treatment prior to the epidemic hitting had
less than 20 and in some cases less than 10 percent HIV
positivity, this is a compelling argument to bring our most
severely impaired hardcore heroin addicts into treatment as
promptly as possible.

We must have increased treatment. We need to have
emergency clinics, holding clinics, but then patients should as
soon as possible get into programs with full services; full
services including counseling, psychological but also medical
care. Special clinics you will see on this slide I feel are
going to be essential to be developed to address the multiple
medical problems as well as psychological problems of the heroin
addict now in methadone maintenance treatment or drug-free
treatment but who is found to have AIDS disease or,
parenthetically, hepatitis B delta disease or both.

245

 

 
 

 

It is essential that we move promptly to develop such
resources, and I think we must have staff; we must have sites;
we must have financial resources to provide all these things;
we must have education of the public who will drive the
policymakers; and, finally, we must have more both very basic,
clinical and applied research to understand these very important
interfaces between narcotic addiction, cocaine and alcohol
dependency and infection with the HIV.

We don’t know how many parenteral drug abusers are
infected. The estimates have gone as much as a half million to
one million in this group alone. We do know that there’s a
profound variation in the length of time from infection to
disease. We need to learn how that time can be extended further
so that when we finally find our antiviral agent, we can treat
those subjects.

We also must prevent spread in those regions where HIV
is uncommon. We cannot wait, as we did in New York, until HIV is
very common to apply appropriate treatment, modalities and
approaches. Treatment is prevention. Thank you.

DR. PRIMM: Thank you, Dr. Kreek.

Dr. Kreek, for the Commission I would like very much
for you to provide a copy of the last three slides I think you
had there. That would give us something to refer to in
relationship to your recommendation, what kind of methadone
maintenance treatment programs that we ought to have.

DR. KREEK: I would be very glad to do that.
DR. PRIMM: Thank you very much. Dr. Newman.
DR. NEWMAN: Thank you.

My comments are going to be repetitive, to some extent,
of what has already been said by my fellow panelists, and I
apologize for that. I also apologize in advance for the very
Simple, straightforward, seemingly self-evident message that I
want to give you.

Basically, it’s my contention that treatment must be
available to every single heroin addict who wants it and who
needs it. As you can see, it indeed is a very straightforward
statement. It’s inconceivable that anybody would take an
opposing point of view and say, well, even if heroin addicts are
out there shooting dope, who are killing themselves, who are
spreading disease to others, engaging in criminal activities,
doing all the things that we know to be associated with IV drug
users, even those who want treatment, let’s leave them out there
on the streets.

246

 

 
 

 

It’s just inconceivable to me that anybody would
quarrel with the assumption that immediate treatment must be
available to every single heroin addict who wants it.
Unfortunately and incredibly, the reality is that this very
simple premise has not been acted upon by any city, any
community in the entire United States. There is not a single
city that I’m aware of anywhere in America that can say if you
are a heroin addict and you want treatment, immediate treatment
is available.

Again, it is simply incredible to me after years of
trying to convey the same message that, in fact, nowhere in the
United States is it possible to offer immediate treatment to
every single person who wants and needs it for heroin addiction.
The question, obviously, is why is that the case? Why has it
been this universal inability to act on something that even a
six-year old child would recognize as absolutely imperative?

Dr. Primm mentioned several times this morning the word
"racism", and I personally feel that racism indeed is a very
major part of the reason for this inability or unwillingness to
do what everybody who has pure common sense would recognize to be
absolutely essential. I think the inability to provide
treatment also reflects a couple of myths that are very, very
prevalent. One is that addicts don’t want treatment. That’s
absolute nonsense.

Related to that is the thought that if we make it a
little bit easier, a little bit safer for addicts by teaching
them how to use bleach to sterilize the needles, let alone make
sterile needles and syringes available to them, that then
whatever glimmer of motivation they have for treatment might be
lost. Absolutely untrue. It has been demonstrated to be untrue
in California, in New Jersey, in New York, in cities throughout
the country. There’s a desperate motivation for treatment.

Another myth is that treatment doesn’t work. Even
those who want treatment, who can get it, that it’s ineffective.
Absolutely untrue, and Dr. Kreek just referred to some of the
data that demonstrate the enormous positive impact that treatment
of various kinds can indeed and does indeed have on IV drug
users.

There ‘are also a lot of secondary issues that people
get hung up on. People ask about how long does methadone
treatment have to be provided and in what doses, and people
question the retention rates in therapeutic communities and say,
well, why is the retention rate only 30 percent or 40 percent and
what about the rest?

247

 

 
 

 

All of these are very, very important issues, as is
the question of how to define addiction and how to cure addiction
and what causes addiction. All of those questions, as important
as they may be, I urge you to view as secondary and that you
focus on the one and only issue that is of paramount importance,
and that is the ability to make treatment available to every
single addict who wants it.

As an administrator, I’ve learned that when I urge
people to do something, I try to have some kind of quantifiable,
readily identifiable end point to determine whether or not they
have achieved it and whether the goal has been reached.

In this case, it’s very simple to give such an end
point. I would like to show a 30-second spot which is one of
dozens that has been prepared in Hong Kong over the years which
demonstrates unequivocally that they in Hong Kong indeed have
achieved the goal which I would urge you to embrace.

Frank, I think it might be unplugged. I promise it
will be exceedingly brief.

[Pause. ]

DR. NEWMAN: Frank, rather than take the time to try to
make it work, the message is a very straightforward one. Again, ”:
it’s one of a series of spots that has been developed in Hong
Kong.

It basically says if you or a friend have a problem
with heroin addiction, immediate help is available. Absolutely
clear, very, very simple. The government of Hong Kong has been
in a position to make that announcement nightly on TV and in
posters throughout the colony for well over ten years. It’s
inconceivable to me that we in the United States can’t do exactly
the same thing.

I would urge you to demand -- not to recommend but to
demand that government at all levels in the United States make an
immediate commitment to having a treatment alternative available
to every single addict who wants it and who needs it. If we’re
not moved by the horrors, the economic horrors, the medical
horrors, the social horrors associated with IV drug abuse per se,
then certainly this new additional compounding problem of AIDS
certainly has to move us. If we’re not moved by compassion for
those who have these problems, for heaven’s sake, we ought to be
moved by our own straight interest, our own personal interest.

Because the entire American society pays the price
through health as well as through dollars by not doing what is so
self-evident and so imperative and so achievable, and that is
making immediate treatment available. ‘Yhank you.

248

 

 
DR. PRIMM: Bob, did you start the TV before?
DR. NEWMAN: Yes, it worked before.

Again, the message, Dr. Primm, is so self-evident that
I really have summarized it. It basically says if you or a
friend have a heroin addiction problem, immediate help is
available. It happens to do so in a very nice, artistic way, but
it’s that message, the ability to convey the message which has
been in existence in Hong Kong for over a decade which is not
feasible in any city in this entire country, and it is simply
mind-boggling that we have not been able to tell this group of
people who are the number two, if not number one, group at risk
for getting AIDS and unquestionably the number one group for
spreading AIDS to the heterosexual and infant populations, that
we have not been able to tell them, hey, stop killing yourself,
stop killing the rest of us. Effective treatment is available.
This is the number to call to get immediate help.

That we cant’ do that is simply incredible, and it’s
a national disgrace for everybody who is associated with and
involved in trying to address these societal problems.

DR. PRIMM: May I suggest that you fix the electronic
whatever while the other speakers are talking, and perhaps the
Commission will be able to see it at the end of everybody’s
presentation. Our next speaker is Dr. DeLeon from Phoenix House
in New York. Dr. DeLeon.

DR. DeLEON: I, too, would like to thank the Commission
for the opportunity to present my remarks and also to, as with
Dr. Newman, apologize for what seems to be a repetitive message.
You’re talking to a treatment panel, and so there is a great deal
of consensus in the treatment world.

I think what perhaps will be new or some contribution I
can make to the discussion is to simply abbreviate my own
testimony and to highlight two or three points which refine the
message that you’ve been hearing from this panel about treatment.
The refinement is to tell you that the fact that treatment is
effective, is well documented in the scientific literature.

While we’ve heard some of that data today, I think for
the Commission’s sense of security on this, there is a rather
considerable literature, scientific literature, which documents
the effectiveness of treatment. Let me then say, beginning with
that, how you need, to understand and interpret that literature
so that you can make the right recommendation.

Let me just highlight some points. One is that it’s
important to recognize that drug abuse, particularly IV drug use,

249

 

 
 

 

is a disorder of the whole person involving multiple areas of
functioning. So that any treatment approach in order to be
effective ultimately has to address many dimensions of the
client. You’ve heard much about that today.

A second point that needs to be understood in order to
sophisticate that message is that rehabilitation is a long- term
process which focuses on maintaining pro-social behavior and
minimizing relapse to chemical dependency. This is the idea of
the no-quick-fix that you’ve been listening to, but it’s very,
very important because we have a lot of competing ideas,
particularly recently, which focus on the idea of short- term
treatment in terms of cost issues and cost benefit issues.

a - Everything ,we know about, treatment ectoctiveress in all
of the major modalities/is, that it is a long-term process. It
has to be costly from that point of view. .

/

However, when we look at our success rates and our
effectiveness rates, the cost benefit bang for the buck is
enormous; that is, clients who recover from their IV drug abuse
and remain in pro-social behavior do, in fact, remove themselves
from being a tax liability in many ways, on the criminal justice
system, on usages of hospital services, on their medical care,
and, of course, improve their pro-social behavior.

Another point that I think refines the message in terms
of treatment effectiveness is that drug abusers in general are
more similar than different. While there is a wide range of
users and individual differences are very important, research
now tells us that across the board we know a lot more about
drug abusers as individuals and how they should be treated.

Of course, this has been well-described in literature.
Drug abusers of all sorts but particularly IV drug abusers will
display poor tolerance for frustration, inability to delay
gratification, difficulties in sustaining responsible living.
All of these are well documented by psychological studies.

That highlights the issue of what has to be addressed
in IV drug abuse treatment; that is, you are always addressing
the person, not simply the drug; and you have a very large
agenda, which includes a multi-dimensional approach. Treatment,
therefore, has to be complex, addressing the whole person.

In particular, though, when we talk about certain
subgroups of drug abusers in contrast, let’s say, to the
homosexual community, which is the other one at high risk for
AIDS, you find that in the IV drug abuser they are generally
more disaffiliated from the mainstream and, Eharerore, more

resistant to change. \ \ \
\

250

 

 
 

 

‘{

If we try to simply adopt the same methods at the same
intensity for changing behavior and attitudes as we’ve done in
the homosexual community, we’re not going to be as successful.
We need to intensify those messages, and when I get to my
recommendations, the recognition of these differences between
IV drug abusers and, let’s say, homosexuals in terms of the
recommendation will be evident.

Is treatment effective? Yes. You’ve heard that, and
I think the answer is an unequivocal yes. But to just summarize
some numbers for you and a good way to look at how it’s
effective is that we have four major modalities in treatment:
detoxification; methadone maintenance; drug-free outpatient
settings; and residential therapeutic communities.

You’ve heard quite a bit about methadone maintenance,
a little bit about detoxification and probably not enough about
drug-free outpatient settings. But the message is when we
summarize all the data that we have in the major national survey
studies as well as program based studies, there are essentially
one or two critical findings that describe the effect of this
picture.

Each of those modalities is effective in terms of its
principal aims. Detoxification has a very specific aim in what
it wants to accomplish with the client, and it accomplishes that
in over 90 percent of its clients; namely, a medically safe
withdrawal from heroin.

If you look at the principal aim of methadone
maintenance, which is to sustain the individual in a licit
methadone status so that they are not engaged in antisocial or
asocial behavior and that they can hold themselves open for
rehabilitation, methadone maintenance is successful that way.

If you impose the criterion of abstinence on methadone
maintenance clients, you have a less bright picture; but the
important thing is that in terms of the principal aim of
methadone maintenance, which is to retain the individual in
treatment and keep them in a pro-social position while they are.
on licit methadone, they meet that aim quite successfully.

If you look at drug-free outpatient settings which are
a diverse group of clinics and services, it’s a little bit more
difficult to assess the effectiveness of this because they use a
diversity of methods, and they see different kinds of clients.

But on the whole when you look at the data -- as you will see in
my testimony, I have included some figures from the national
survey studies -- that success rates, favorable outcome rates

range between 30 and 40 percent in those ambulatory settings also
despite their differences, and the biggest and most important
finding there is the reduction in their drug use.

251

 

 
 

 

When you move toward residential therapeutic
communities, a modality with which I am particularly identified,
you have the same findings. The primary goals of those
treatments include abstinence as well as pro-social behavior,
that is the elimination of criminal behavior, and the imposition
of pro-social employment and educational behavior.

When you look at those kinds of goals, therapeutic
communities are absolutely effective in terms of their goals,
which is a lifestyle change. Success rates range anywhere from
35 to 40 percent, when you look across all admissions into
treatment.

We now will move to the second most important finding
about treatment effectiveness, and that is that the success rates
in treatment are directly related to length of stay in treatment.
This is true in all of the major modalities, and this is a very,
very important finding that you need to know about treatment
effectiveness.

One good example is in studies at Phoenix House in New
York, one of the nation’s largest therapeutic community systems.
If you look at success rates among its program completions, its
graduates, and the most recent studies were five to seven years
after treatment, success rates ranged up to 57 percent in male
IV drug abusers.

If you look among their dropouts, success rates
average 33 percent, people who didn’t complete treatment, but
if you looked at the actual curve of success, you would see
that success was directly related to how long they stayed in
treatment, ranging anywhere from 15 percent to over 50 percent
of the dropouts who had remained at least a year in treatment.
These were all IV users that I’m talking about.

I think the fist major point that needs to be
summarized is that drug treatment is effective, and it’s
effective in each of its major modalities in accordance with
the aims of that modality.

Secondly, that successful outcome is directly related
to length of stay in treatment. Now, why that is important is
because everything begins to boil down to dollars. So when you
discuss treatment and investing in treatment, you have to do
that informed by these findings, that it’s going to be long-term
treatment and that, in fact, the longer the client stays in
treatment, the better the outcome; therefore, all funding
policies must be guided by that.

Let me then go on to a second point about comparative
effectiveness. While I’ve talked about different modalities and

252

 

 
 

 

their relative effectiveness for each in terms of their aims,
what we do not know yet in terms of a critical question is can we
match the client? If we go into the IV drug abusing population,
can we wisely assign clients to particular treatments so that we
can maximize success rates?

The answer to that question is not yet. We do have
some rough exclusionary criteria. We know on a kind of rough
basis who might not go into certain modalities, but on the whole
we could not yet say what it is about the client that would
predict successful outcome if we put them in a particular
treatment situation.

That’s a clinical research question that is currently
under investigation and needs more support. There simply is no
typical client profile that has emerged which predicted a
successful outcome in any modality.

The third point that needs to be re-emphasized about
treatment effectiveness and, again, that would be translated
into recommendations about funding is that the most consistent
predictor of successful outcome that we have is not the client
characteristic but simply retention in treatment; time spent in
treatment. Unfortunately, though, premature dropout is the rule
in all treatment modalities with the exception of detoxification,
and there are some modalities that are better than others in

terms of holding their clients.

Nevertheless, we all still are concerned about the fact
that large numbers of people drop out of treatment before what
we would see as being in a completely stable state. Despite the
importance of the dropout problen, it has only recently drawn the
attention of objective research, and as with predicting success
there is no typical profile of the clients who complete treatment
or drop out too soon. Current research, however, is beginning to
identify reasons for dropout and methods for enhancing retention.

Now, the reason why I wanted to fuss around these two
points is that in the recommendations that I will make, which
really differ, I think, not at all from those that you already

heard, I think you will appreciate the emphasis that I’m making
on at least aspects of those recommendations.

Certainly you’ve heard about making treatment slots
available and accessible. That doesn’t have to be repeated.
Given the fact that we know that treatment is effective,
treatment slots have to be available.

But we also know that they have to be accessible; that
is, methods for somehow increasing the probability that the
client can quickly get into treatment are very, very important.
We've heard a little bit about that today, but we certainly need

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more support to investigate shrewd technologies, of how to move
people quickly into treatment.

The third point is the one that I like to stress, and
that is it’s very evident for any observers of the treatment
system to see that we can be in the foreseeable future
successful in driving people into treatment, but what are we
going to do to hold them in treatment, since everything we know
about outcome is dependent upon staying in treatment, and yet
that’s the one area that been underdeveloped in both our clinical
and our research know-how.

So as part of any general recommendation in the support
of treatment, one of the real important areas of focus in the
clinical research agenda has to be methods for enhancing
retention in treatment, how to hold them in treatment. That’s
an overriding one. Let me conclude.

The existing treatment research systems assembled over
the past 20 years provide a solid infrastructure for addressing
the problem of the IV drug user. The experience, sophistication
and effectiveness that has developed through research and
clinical practice is the base upon which new methods and
techniques can be advanced. Incidentally, the point I’m really
stressing about this is that we actually have 20 years or better
of know-how and a rather considerable knowledge base on how to
address this problen.

So the point is that what comes out of these
recommendations is for our own consensus, to, in effect, support
what we’ve been doing and who we are and how we’ve been doing it
rather than searching necessarily for dramatic new ways of
approaching this problem. We have a very good infrastructure in
place, but it does need help.

A key lesson from the years of experience, however, is
the necessity for a committed federal policy to provide stable --
I’m underlining that word -- support for drug abuse treatment and
research. Now, you have heard a great deal about treatment
effectiveness and why we need dollars, and no one’s arguing about
that; but I think in the analysis of the whole funding issue over
the 20 years, I think, the issue would not be that the
government has not supported drug abuse treatment and drug abuse
research. The problem has been the constant winds of change, and
that is the instability of that support and not knowing year to
year how much money was available, whether research would be
available, or whether treatment slots would have be available
from year to year.

The knowledge base that has evolved is particularly
impressive, considering the history of fluctuating support and
shifting policy concerning drug abuse. Sadly, the AIDS crisis

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brings new urgency to solving what is now an old problem. -

Fortunately, the ground work has prepared us to engage in this
urgency, but an unambivalent social policy which sustains the

high priority of drug abuse treatment and research will assure
that we can meet the challenge.

Again, the emphasis here if I were making those
recommendations tomorrow, it’s not simply get more money and
create more treatment slots. That would actually constitute the
details of an agenda. But the real message that we want the
society and funders to hear is there has to be a committed,
sustained policy that would probably take us over the next 20
years at the very least, and no more year-to-year choreography as

to how much money is available. Thank you for listening.

DR. PRIMM: Thank you so much, George. I want to call
the Commission’s attention to some addenda items that were
placed behind George’s testimony, Dr. DeLeon’s testimony. One
of them talks about post-treatment outcomes, the DARP study; and
the other one is one that he produced that talked about success
and improvement rates, and it’s drafted in terms of time in
treatment. I think they are excellent. Thank you very much,
Dr. DeLeon.

Ms. Shirley Coletti, I guess, will give us a
southeastern United States view.

MS. COLETTI: It is going to be different from New York
and hopefully we can keep it that way. |

I appreciate having an opportunity to present before
this Commission and I understand the difficult task you have
ahead of you.

Operation PAR is the organization I represent and have
had the privilege of doing so for the past 17 years. I came to
that organization by virtue of being a mother that discovered I
had a youngster that was involved in drugs and felt there was no
place to turn, there were no resources in our community. We got
together with a variety of different people, sheriff, the state’s
attorney and concerned citizens, and put together an organization
called Parental Awareness and Responsibility.

We felt at that time that if we could educate parents
and help them become aware and responsible, that we could really
turn the tide and end the drug problem in our community. As you
can see, that was not to be the case even though we think we
have contained the problem to a degree, we also realized that we
had to get involved in extensive treatment.

We started with heroin addiction and started our first
methadone treatment program soon to be 18 years ago. We formed

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our program with the belief that people really could be
rehabilitated. I cringed yesterday when I heard the discussion
on the possibility of what I interpreted as opening drinking
stations and methadone dispensing mills around the nation.

PAR was founded on the belief that young men and young
women could be successfully rehabilitated. Even though PAR does
not have sophisticated evaluation and research components, we do
feel that we have a very high retention rate because we are a
good program. In 1986, our program received the outstanding
program of North America award, by the Alcohol and Drug Problems
Association of North America. We know we are good.

We also know that good programs do retain people in
treatment. We know that we have a high percentage of people
that leave treatment within the first month of coming into the
program. One in three young men and women that come into our
residential treatment program leave the program. One of the ways
that we can keep them in the program, is by virtue of the fact
that they are mandated by the court. About 70 percent of the
residents in our therapeutic community are mandated through the
criminal justice systen.

I like to think that our residential program is really
an extension of the criminal justice system and that many young
people come there and actually finish their sentence in the |
residential treatment program. Of the people that complete the:
year to 18 months of treatment, with the people that we can stay
in touch with, as high as 60 to 70 percent, have not re-engaged
in drug abuse or any illicit criminal activities.

Yes, you have heard from some of the finest in the
nation that treatment is effective and treatment does work. I
am here to tell you as a mom from St. Petersburg, Florida, that
it also works in Florida.

We are presently providing residential treatment to
over 100 residents. As a matter of fact, we have 86 beds and
about 101 people in treatment. They sleep on roll away cots.
They sleep on the floor. We have a very difficult time turning
people away. We have 177 people in methadone treatment in our
program. I might add that we are one of the few programs, and
one of the only programs that I am aware of that has a truly
comprehensive program in that we are a traditional therapeutic
community. We also on different property, have a methadone
treatment program. We have an adolescent residential treatment
program for 30 adolescents that are 13 to 17 years of age.

We have a waiting list of over 250 people to come into
our residential treatment program. Where are they waiting? They
are waiting out on the streets. They are waiting in jail. They
are waiting in shooting galleries. They are waiting for help.

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Due to the lack of funding, Operation PAR was not able
to initiate HIV testing until August of this past year. New
admissions to PAR’s methadone program are currently routinely
being screened and tested. Although the results of such testing
is really preliminary, it provides implications for treatment.
Based upon the 40 tests that we have conducted from August to
October on high risk patients admitted to PAR’s methadone clinic,
a total of 4 positive HIV test results, 10 percent, have been
found. More extensive HIV testing has been conducted by our
Pinellas County Health Department. According to those tests, a
total of 170 positive HIV test results have been obtained from
2,335 tests conducted. This represents an overall rate of 11.6
percent positives for all HIV tests conducted.

Although the percentage of positive results reported
are considerably lower than those acknowledged by major
metropolitan areas, we feel strongly that we in our county and in
our state are just measuring the tip of the iceberg. The truth
is that throughout the country, there are hundreds of community
based treatment programs facing the problem in relation to AIDS.

When I say a community based treatment program, I’m
talking about a program that has a local board of directors that
is willing to seek loans, a board of directors that is willing to
go out in the community and raise funds. Out of a $4.5 million
budget, only about $800,000 of our budget comes from the Federal
Government. We are not one of those programs that is truly on
the public dole, and that is like many other community based
treatment programs who are suffering the same effects PAR is.

In the field of drug abuse treatment, acknowledge that
a small percentage of the high risk population of drug abusers
are currently involved in treatment. You have heard those
statistics. The percentages reported are only those users who
come into treatment. Compounding the difficulty and accurately
assessing the potential risk evident to IV drug users is the
dynamic of the addict. Addicts are sick. The disease of
addiction, the need for the drug override any logical concerns
for their safety or the safety of others.

Dr. Walsh, you were concerned and you asked that
question and I am going to pursue that question with some of my
recommendations. They will continue to use unless they are
treated and while they use, they will continue to spread AIDS.
It is very, very simple. What can be done?

For years, drug abuse professionals have pleaded with
local, state and Federal authorities to provide treatment
programs adequate to meet the need. At Operation PAR, I have

stated to you that we maintain long waiting lists for residential
treatment.

257

 

 
 

 

We will open next week a second methadone clinic. We
need to go from St. Petersburg to Brandenton, which is a rather
lengthy drive. Needless to say, we have a lot of other agendas,
we shouldn’t have to do this. The mere fact that we knew that a
private physician who we felt was rather unscrupulous and could
legally sell methadone was planning to open south of St.
Petersburg, led our Medical Director and our Board of Directors
to decide that PAR would extend our services to Bradenton. We
have no money to extend those services. Our board is borrowing
the money to open a clinic. We have to charge $47 a week just to
break even, with our staff working excessive hours and traveling
from St. Petersburg to Bradenton in order to operate the clinic.
We have to charge the $47. You well know that a waitress or
unskilled laborer making $4.50 an hour, $5 an hour, is going to
have great difficulty in coming up with that $47, but the
alternative is to drive from as far as Port Charlotte, Ft.

Myers, Venice, Sarasota, all the way to St. Petersburg to come to
a publicly funded treatment program.

In our publicly funded treatment program, we charge $25
a week. We have a sliding scale. No one is refused treatment
because of their inability to pay. In our residential treatment
program, because we are blessed to have some pretty good funding
in that program, we do not charge a fee associated with the stay.
However, in the last phase of treatment, the residents go to work
and they are in transition and'they pay the program back.

I just want to get that message across. We are not one.
of these bleeding heart programs that are just constantly saying,
give us more money. I like to use PAR as a demonstration of what
mobilizing a community really can do.

Drugs remain a high risk for spreading HIV virus to the
heterosexual community. From the vantage point of a community
based treatment program, there appears to be four strategies that
we can engage in to help contain the rising epidemic.

You have heard it and you have heard it, and that’s
education. Programs and materials must be developed to address
the special educational needs of the addict and their
significant others. Support networks like Alcoholics Anonymous,
Narcotics Anonymous, need to take an active role in prevention
and education. Special attention must be focused on minority
education regarding the link between AIDS and IV drug use.
Currently, there is a disproportionate rate of infection among
certain population groups. Prevention efforts and education
efforts must be developed and implemented in cooperation with
health officials and drug abuse professionals.

One of the other hats that I wear is that of past
President of the National Federation of Parents for Drug Free

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. | oo

Youth. I am also ‘presently the President of Florida Informed
Parents for Drug Free Youth. That is a network of parents
throughout the State of Florida, that have come together to do
what they can in the effort to fight drug and alcohol abuse in
our state. Our Governor’s wife is the Chairman of the Board of
Trustees. In the charter of our organization it says for
alcohol and drug abuse prevention, the parents got together about
two months ago and said, because we are so concerned about our
teenagers and the risk of AIDS with teenagers, we would like to
add in our charter, alcohol, drug abuse and related diseases.

We are not just talking about drug addicts here. We
are talking about teenagers, and providing good, high quality
education materials. Number two would be to expand local
treatment capacity. Waiting lists for drug abuse treatment are
a breeding ground for social problems. Crime rates, social
problems and AIDS all tend to multiply when waiting lists for
treatment are long. At PAR, the waiting list has been frozen as
a matter of fact since March of 1987. On the average, the wait
is six months to eight months per client to come into treatment.
Obviously, people get discouraged.

Additional treatment capacity would enable communities
to address the addiction needs of these people while working to
contain the AIDS epidemic by providing a structured environment
and treatment for the client. We also need to realize that
education on the risk of AIDS for IV drug users will not be
extremely successful for the active addict. These people are
hopelessly caught in the cycle of addiction. Provision of
treatment will deal with this addiction and contain their high
risk behaviors.

Point three is interagency cooperation. I think you
have heard yesterday and today that many different groups are
addressing the AIDS epidemic. Local, state and Federal programs
must begin to work together to develop successful prevention,
containment and treatment strategies. Interdisciplinary work
groups must be established. These groups must include public
health, medical, drug abuse, social service, the media, education
and government professionals. These groups should share
information on high risk groups, develop strategies for
prevention, education and treatment and most importantly, monitor
their successes and failures and share the information with other
groups.

Point four, and probably the most controversial point
that I care to raise today, is the containment program. In
recent months, we have come to the realization that we are at the
head waters of an epidemic that could devastate our nation’s
population. Unfortunately, we have also been made aware that a
percentage of the people infected with the HIV virus continue to

259

 

 

 
 

 

act in a reckless manner, even after notification and counseling
by both physicians and counselors, about their infectious state.

Addicts who are using are impaired. They are not
acting responsibly. They are in a position to endanger the
health of hundreds of people in this nation and in this world.
There appears to be growing support for the development of a
containment policy for non-compliant carriers. Suggestions
include progressive sanctions that often begin with a warning
and result finally in physical restriction. Non-compliant
carriers must be addressed as dangerous to public health.

Another issue related to containment deals directly
with geography. The high risk groups of IV drug users can be
described as somewhat transient. Heroin addicts and addicted
individuals that are in New York like to come to Florida for the
winter. This group tends to drift with the supply of drugs or
where programs like methadone clinics will accept clients.

As I stated previously, new admissions at PAR’s
methadone clinic are running about 10 percent positive. Figures
supplied by programs from other metropolitan areas like New York,
as you know, are considerably higher.

Operation PAR has always maintained an open door policy
for interstate transfers for methadone treatment. We are
concerned, however, about a potential conflict with an open
admission policy and the health of our community. We need to
turn our attention to developing a national policy to address
AIDS. The policy must be comprehensive and it must be bala ced.
Medical research must continue while equal amounts of effort,
attention and dollars are spent on education, prevention,
treatment and containment. ;

As a Director of a comprehensive treatment program, I’m
confident that by increasing our treatment capacity for IV drug
users, we can see significant reductions in those testing HIV
antibody in our community. Current research indicates that
conservatively one out of every ten Americans become involved in
drug abuse. IV drug users are currently identified as major risk
groups for AIDS transmission. We need to address the needs of
these addicts to help reduce the risk of AIDS. As I was |
preparing for this testimony during this holiday season, I wa
reminded of a Christmas carol by Charles Dickens. Ebenezer |
Scrooge was visited by three ghosts, the ghost of the past, the
ghost of the present and the ghost of the future. Ina sense, I
feel that we are much like Ebenezer Scrooge. The testimony ‘that
you have received during these hearings refocused our attention
on the past and on the present. However, we have a chance ‘to
awaken like Dickens’ character and we have a chance to change our
future. God speed be with you. .You have a difficult job ahead.
Thank you. -

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DR. PRIMM: Thank you, Ms. Coletti. I would like to
ask the panel to sort of keep their questions down to one each,
because we are running a little behind schedule. I would like to
use my one question, one and a half questions.

[Laughter. ]}

DR. PRIMM: To ask Dr. Kreek to explain something she
alluded to in her presentation, only if she will take a minute to
explain it. Other than that, she will have to write it and get
it back to the Commission.

You alluded to an abnormal hypothalamic pituitary
adrenal axis in relationship to stress. You quickly went over
that and I knew why you did that, because you didn’t want to be
laborious in your presentation to the Commission and the
audience. What is important here is that link, when heroin
addicts are chronically addicted, they do not respond well to
stress. You talked a little bit about endorphins.

If you could do that in one minute, you can do it, or
else you may have to write it in lay terms and get it back to us
later on.

DR. KREEK: Let me try to do both. The one minute
presentation, I will say that the major stress response
mechanisms of our body are controlled in our brain at a site
called the hypothalamus, that is connected both with our thinking
brain and with our, if you will, visual brain. The pituitary
gland, which produces several hormones, peptide, protein like
hormones, and the adrenal gland. The adrenal gland, like an M&M,
outside cortex, inside medulla, both release stress responsive
hormones and neurotransmitters.

It is now known that short acting narcotics such as
heroin in humans but not in animals, basic scientists beware, we
are a bit different than rodents or even some of the primates,
reduces the major peptide of this axis in the hypothalamic
region, and also affects other modulating hormones. The
corticotropin releasing factor which is so reduced in turn
reduces the production and release of what we now know are two
first cousin peptide hormones that come from the pituitary, ACTH,
which almost everyone has heard of, and beta endorphin, which I
am sure everyone has heard about. It has been written so much
about, since its discovery a decade ago.

We now know that heroin has also a direct action on the
pituitary gland to reduce these two stress hormones. Therefore,
the adrenal cortex, the outer coating, which normally depends on
ACTH to drive its production of cortisol in humans, a steroid in
lay vernacular, cannot produce the normal amounts and the heroin

261

 

 
 

 

addict in narcotic withdrawal, when the narcotic is gone, the
opposite occurs. There is a surge of release of these hormones.

The adrenal gland, getting hopelessly confused, instead
of having its normal up in the morning, down in the evening
rhythm of cortisol release, and the pituitary likewise which
normally has this up and down circadian rhythm of release,
become flattened. When heroin is constantly on board,
suppression and therefore lowered levels of compound are present.

What we have been able to show is that during
stabilized profusion with the long acting opiate, methadone, the
circadian rhythm and release of ACTH, beta endorphin, and this
adrenal steroid, cortisol, become normal. Cortisol normally goes
back to the brain and the pituitary and controls in a negative
feedback loop the release of peptides. That feedback is
disrupted during heroin use and that also becomes normalized.

We also know that when stress occurs, normally all of
us will put out more of all these peptides. There is a well
established endocrine test to look at the ability of the brain
and the pituitary to put out more hormones. It is called the
metyrapone test. We know from our studies and those of others
that in the heroin addict, the ability of both the brain,
hypothalamic, and the pituitary gland to put out additional
stress related hormones, is impaired. In the methadone contained ’
patient, we have now an increasing body of highly controlled data
showing that the response to metyrapone, this induced stress,
becomes normal.

The most crucial question, and I will have to say it is
research in progress, what pertains in the drug free former
narcotic dependent individual? My dear friend, Dr. DeLeon and J
many others from drug free communities are helping me identify
research subjects to look at this. I always advertise that we
need more such research subjects.

What we are showing in the small number we have studied
so far is at least in the early drug free period, and by that I
mean during that first year, where we know vulnerability is so
very high, the response is abnormal to this induced stress.
There is a hyper responsiveness. A lot more research is needed
to establish this.

If in fact this continues to pertain, it may well be
linked with the well established phenomenon of drug seeking
behavior and possibly also with the depression which can be
clinically diagnosed in so many early abstinent patients.

With respect to immune function, all I can say is that
our normal homeostasis, that is the counterbalancing of pluses
and minuses throughout all our physiology also pertains to immune

262

 

 
 

 

on

function. We appreciate increasingly that these stress hormones, -

particularly ATCH, cortisol, but also possibly beta endorphin,
have direct effects on our immune functioning.

We also know that the adrenal medulla which releases
norepinephrine and epinephrin, especially the latter, may also
affect not only endocrine function but immune function and we
know the gonads, which I am not going into, but disrupted during |
heroin addiction normalize and become important for imnune

function.

When we normalize neuroendocrine function, we may also
be helping to normalize certain specific indices of immune
function, another very important area for continuing research.
The important question is does abuse of drugs on the street
contribute, if you will, to the immunologic disruption not only
by a direct drug effect but also very possibly by this indirect
neuroendocrine mechanism. Thank you.

DR. PRIMM: Thank you, Dr. Kreek. I am so glad,
Mr. Chairman, to get that on the record, even at the expense of a
little longer than a minute. I think it is important for us to
have that information. I have used up my question and a half or
at least Mary Kreek used up my time, but I will get her down the
line somewhere.

DR. WALSH: I just wanted to comment briefly and I have
one question. I really want to commend you, Mrs. Coletti. You
are a little different than the others. I can remember many
years ago when I was speaking in Pinellas County. She came out
to meet me at the airport and picked my brain all the way in on
how to raise money. I tell you, she got evezy secret I knew. I
am so pleased that you have done so well with your program.

The one question I wanted to ask along with a little
bit of a comment, is I have been a little distressed over the
past couple of days to hear the word "racism" raised so often. I
certainly am not familiar with racism being a cause in
restricting methadone budgeting or in attitudes towards AIDS and
I think if we want to be constructive about getting the country
to understand that this is a national disease, it is a disease of
all people, it is not a disease of blacks and hispanics, that is
temporary.

It was two years ago the homosexuals were claiming it
was their disease and now they wish they never had, because it
isn’t their disease either, but they started to run into the same
problem of saying, well, the attitude was prejudicial and that
nobody wanted to help because it was their disease. It wasn’t
their disease. It is not the blacks’ disease.

263

 

 
 

 

I think it is detrimental to the chances of getting the
kind of support we need to even raise the specter of racism, have
it picked up by the media and one thing or the other as something
that is juicy and sensational and so on. We are here as a
Commission, black and white together, if you will, to try to
solve the problems, to try to suggest solutions to the President
on constructive policy. We have been tremendously impressed by
what all of you have said, not only this group but others.

The one thing I wish that we would really avoid is
putting labels on this kind of thing. Methadone treatment, you
all know, but the general public doesn’t understand, it is not a
black or white thing. The public doesn’t understand it. I
learned more about methadone treatment in the last 48 hours than
I ever knew, and I thought I was pretty damn smart. I learned a
great deal that I didn’t know.

I just wanted to make that comment because I think it
is terribly important that you understand we are in this together
as a country and we don’t want this to become a part of any
Special group’s disease. We have the problems of resistance on
the part of some of the black churches, reluctant to participate
in education because they don’t want it labeled as a black
disease.

If we start talking about racism, they are going to get
more reluctant to participate with us in both the fight against
drugs and the fight against AIDS. I would hope that we would
really not complain ‘about society’s failures always as being
based on some kind of prejudice or indulge in the fantasy that by
passing some bizarre type of legislation saying racism is
naughty, that that is going to affect anything. We can’t do
that. It is not going to change anybody’s mind. What we are
after is solving the problem and not getting people excited about
other aspects of it. If any one wants to comment on that, that
is my question.

DR. NEWMAN: I probably shouldn’t but I shall, just to
say that basically I agree. I think we come at it from two
different sides but we reach the same conclusion. Dr. Walsh, you
indicate that we have to make it clear to this nation that this
is not a black and hispanic problem and it is not a gay male
problem. I 100 percent agree and one of the reasons I agree so
enthusiastically is because I think in this nation, the
unfortunate reality is that a disease that is inappropriately
perceived as being a minority or a gay male disease will not get
the attention and the resources that are required. I agree fully
with your assessment, although we come at it I think from
somewhat different ways.

e
!

DR. PRIMM: Dr. Kreek?

264

 

 
DR. KREEK: The only thing I want to say is I think we
must say this is certainly a national problem that we all have to
join hands in addressing in the most sensitive, caring and
intellectual way that we can, everyone must be helped.

DR. PRIMM: Dr. Conway-Welch?

DR. CONWAY-WELCH: I think it was Dr. DeLeon who spoke
about technologies to move people into treatment faster. Could
you expand on that for a moment?

DR. DeLEON: Yes. I made two points. One was the
issue of moving people into treatment faster, which was what I
called the recruitment issue and some of the forces to do that.
They were touched on but I will elaborate quickly.

One is to recognize some of the distinctive
impediments to recruitment in the IV drug using population.
There are some social and psychological factors that have to be
wisely acknowledged in mounting campaigns to drive them into
treatment. Some of those are spelled out in the paper.

I think I talked about the next step after recruitment
which I see, and I think others see, as equally or perhaps more
important, which is holding clients in treatment. It is a
problem and issue that has simply been under acknowledged. In
any new policy, I think we have to build that into the agenda in
terms of supporting technology to do that.

DR. PRIMM: Ms. Coletti?

MS. COLETTI: In national statistics, we see somewhere
around 60 to 70 percent of the people that are in our criminal
justice system that have drug and alcohol problems. In the State
of Florida, it is 70 percent. We presently have 196 cases in
isolation in our state, in our city and county jails, wanting to
get into treatment.

The Department of Corrections in Florida is now taking
a look at changing their regulations so that a person can be
probated to a program 43 months, and I don’t know why they came
up with 43 months, 43 months before their sentence is completed.
What has happened is they have kept people in the criminal
justice system and the state prison until they have say eight or
nine months left of their sentence to serve. Then they have come
to a treatment program, and it has been very ineffective.

I think in our state we are addressing it because we
are now able to get the young people out of the criminal justice
system while they still have a sentence to serve, they are
probated to a treatment program and the alternatives are to stay
in treatment or go to jail. That has some force.

265

 

 
 

 

DR. DeLEON: On this general issue of recruiting people
into treatment, I think it would be useful for us to be aware of
two conflicting messages that have been evolving over several
years. All based on money and cost benefit, one message has
been to maximize bang for the buck to get people out of treatment
as quickly as possible. Therefore, any policy which favored long
term treatment simply is glumly viewed and has always been argued
down. Yet, that flies in the face of everything we know about
the recovery process, which is necessarily a long term process.

A second message which has aggravated the situation
ironically has come out of the wider array of users in society,
not necessarily IV drug users, but the alcohol, cocaine, middle
class, upper middle class users of drugs whose funding base has
essentially been a little more private, third party, \and they
have been dictating more or less, directly and indirectly, what
they see as the virtue of short term treatment, obviously dollars
defined rather than defined by the actual phenomenon.

Neo

We have this message of a wider number of users in
society, treatment to,be provided by third party, get them in,
get them out, and then that message is confused in terms of
elaborating it to the whole drug abusing problem, namely the IV
drug user who absolutely needs the opposite.

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

DR. LILLY: My question has a little bit to do with
what Dr. DeLeon has just referred to. Mr. Mills also talked
about it. We focused on IV drug abuse in this hearing and yet
several people have mentioned somewhat peripherally that other
non-IV drugs are also associated with the AIDS epidemic. I would
like a little discussion about that.

I think there are many people to whom it is not clear
how the use of crack, for example, which does not involve any
direct exchange of blood or blood products, could be involved in
the AIDS crisis, and even perhaps someone could discuss the
recreational use of drugs by people who are really not
pharmacologically dependent on then.

DR. DeLEON: I think there are several ways to look at
the non-IV drug users’ relationship to the AIDS problem. One or
two have been mentioned. One is that all drug abusers,
regardless of their primary drug, once they are involved with
drugs, and not recreational drugs, all drug abusers of other
substances other than opiates, share common psychological
behavioral properties in terms of what we call the addiction
disorder. Marking that disorder is essentially irresponsible

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behavior, which means, a point raised earlier by one of my
colleagues, a drug abuser who will now be engaged in their use is
much more likely to engage in acting out behaviors, sexual, and
occasionally even breaking out into some IV drug use. Certainly
sexual behavior, indiscriminate sexual behavior. They will be
much more prone to do that if they are addicted, no matter what
their substance is.

In particular, if you look at some male/female issues
on this, females may be addicted to cocaine and as a result of
their cocaine addiction, will increase their probability of being
with drug abusers in general and then in turn they can get
involved as casualties through that route.

A second way in which non-IV drug use affects it, is we
know from the behavioral pathways towards serious hard core drug
abuse, there is roughly a kind of gateway approach, and that is
individuals who begin with softer drugs and who are going to go
to serious addiction, and they more than likely will get involved
in other drug experimentation that will lead them to IV drug use.

We are beginning to see a third factor which is even
those who have been regularly involved in non-IV drug use like
cocaine use and crack use, there is a kind of psycho-
pharmacological backlash to that. There is an attempt to
gradually modify the effects of their chronic abuse of those
substances, usually through sedative, so I would predict, and
there are some indicators of this, as the cocaine epidemic
plateaus, we are going to see a paradoxical rise in heroin use
and a rise in other kinds of sedative use, as though that
population is trying to bring itself down and yet stay in a mood
altered state.

MR. MILLS: I think another aspect of that has to do
with sometimes we make a mistake and think of drug abusers as a
heroin addict is a heroin addict and a cocaine addict is a
cocaine addict and an alcoholic is an alcoholic and these are all
kind of separate people. That’s less true today than it has been
in years past. The concept of polydrug use, multiple drug use,
the garbage pail concept of whatever is available comes into
play and then these are not-groups that tend to separate
themselves in their social recreational circles either, as may
have been in many years past. I think there is all sorts of
potential there, because of all those kinds of things.

DR. DeLEON: Dr. Primm, if you will allow me just one
footnote, a conclusion to that is I would be concerned about drug
policy which focused on the IV drug abuser only. The message
that I would rather hear is that we have to keep a steady
vigilance on the drug abuse problem and the treatment issues for
the drug abuse. .

‘ 267

 

 
 

 

t

DR. PRIMM: I had hoped that somebody would respond to
butyl nitrites in relationship to Kaposi’s Sarcoma that we have
often heard and seen this in the Wall Street Journal and the
press. If one of you would respond to that, particularly among
gay men who use it quite commonly. I am sure Dr. Crenshaw may
have some ideas.

DR. KREEK: I think actually that can be listed as one
of many different uses of substances or drugs, which may alter
different kinds of behaviors. Euphoria drugs, drugs which may
alter sexual drives or urges, drugs which may alter perception or
control mechanisms have been identified in many different groups
or subgroups.

I think the important points are the two that have
already been made. There are many different substances and drugs
being abused. The use of drugs for any kind of desire purpose
may in fact lead to behaviors that are different from what would
otherwise be controlled behaviors, and that very importantly and
very unfortunately, one drug may lead to another. The one major
problem, and Dr. DeLeon has mentioned this, we are already seeing
a very enormous number of what we would define as long term
chronic heroin addicts, one year or more, of multiple daily
usage, who began as your upper income or upper middle income
cocaine abusers and who became cocaine addicted and are
attempting now to self medicate.

I think one can talk about many different separate
entities, each of which could have a direct immunologic effect
and indirect immunologic effect through the neuroendocrine
systems, each one of which could therefore set the stage for a
different response to diseases.

I think in terms of prevention, intervention treatment,
we have to think of this as a continuum. However, we also have
to remember that depending on severity of disease, different
kinds of treatment are needed and different lengths of treatment
are needed. I do deplore, as Dr. DeLeon has repeatedly
mentioned, the short term cheap goal, $2,000 a year to do next to
nothing; $4,000 a year maybe would give you an option of
pharmacologic treatment coupled with some counseling or more
intense counseling depending on what the disorder is. I want all
of the above. I would like to see this country go on record for
a package that might cost $8,000 or $10,000 a year per head which
would provide primary medical care as well as primary behavioral
care. If we talking about the hard core narcotic addict,
methadone maintenance would be a part of that. For cocaine, it
Clearly shouldn’t be if that were the major or sole problen.

I am certainly not a health care economist, I ama
bench scientist and a clinical scientist, but if you look at the
dual systems of health care provisions for somebody who is

1

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developing AIDS disease and look at the expense of adding that
health care to the primary chemical dependency clinic and in fact
adding it at the prevention stage and the early treatment stage
as well as at the end stage of disease, I think you will see it
is cheaper to run one full blown excellent resource than it is
two, and the chances of the drug abuser even getting to that
second resource are very, very small. This is in part because

of what the drug abuser has perceived and frequently correctly
so, aS a disenfranchisement of access to the health care system
as we know it.

I would really very much like this Commission to
consider addressing the potential positive value of chemical
dependency treatment resources linked with primary health care.
It would serve yet another purpose. The thing we need most of
all is not dollars, we need staff. We have to have the dollars
for that staff, mind you, don’t think I’m saying we don’t need
any money, but on the other hand, we have to train staff,
physicians, nurses, social workers, counselors, and we have to
get them well trained. We have to be sure they remain
humanistic while they are being well trained.

We have to be sure they are trained both in chemical
dependency and now in some major infectious diseases. To do
this, we have to go to our training centers, medical schools,
nursing schools, social work schools, places where counselors
are trained. If we do that and possibly use the young people
who just finished training, paying them on a moonlighting basis
to help in our emergency clinics, we will identify a whole new
cadre of bright professionals. Society has to tell each one of
these workers that working in AIDS treatment or working in
chemical dependency treatment is a good thing to do, and that
society appreciates workers in these fields for what they are
doing.

I have all too often seen persons working in chemical
dependency units and more recently in AIDS treatment programs
stammer and stutter when they are asked, and what do you do.

‘ DR. NEWMAN: Just so I don’t get a reputation for being
too agreeable, I do have to disagree very briefly with Mary
Jeanne Kreek, because I think you have to focus on what your real
question is. It is not a question of should we advocate $2,000
treatment, $4,000 treatment or $8,000 treatment. That is a side
issue.

The reality before you and this nation is that tens of
thousands of current IV drug users have no treatment, none
whatsoever, even though they desperately want it and languish for
six to eight months or longer on waiting lists, which the whole
concept is unconscionable. They have nothing. Something,
anything, I don’t care if it is $500, some alternative to no

269

 

 
 

 

treatment is absolutely imperative. The concept of waiting lists
is one that we have sort of glossed over today. It is as if, how
long did you wait for your tickets to Les Miserables, you only
waited six months, I waited seven months.

We are talking about people who every day, three to
five times each day, are literally playing with their own lives
and the lives of others. They are doing it for months on end
because programs are telling them when they come and say I
desperately need help, they say, that’s terrific, we are
delighted that you are motivated. Now if you can survive for six
months on the streets continuing to use drugs-- maybe you want to
try to use bleach to improve your chances--then in six months we
will treat you. That is unconscionable and that’s the issue, not
should there be $8,000 treatment rather than $2,000 treatment.

DR. PRIMM: Mr. Besteman?

MR. BESTEMAN: One small comment. I don’t know if the
Commission is aware that in the 1970’s, we had less
infrastructure, virtually no street capacity to treat addicts.
The country said, we don’t like the waiting lists and we are
going to get rid of them. We said it because at that time street
crime was a priority for this nation. That was the
justification. In less than 18 months, we did not have waiting
lists in this country. It was done when there were not 3,000 or
10,000 existing treatment centers in the country. We built up to
about 3,500 during that period. Many of us were involved in that
effort and it wasn’t fun. The fact of the matter is we are
talking about a very doable recommendation. This is not pie in
the sky. This is something we are capable of doing with a
concerted effort in the next 12 to 18 months, easily. It just
means we are all going to work six days a week, 15 hours a day.

DR. PRIMM: You see, all of you are my friends and it
makes it difficult for me. Mary Jeanne, if you will just take 30
seconds.

DR. KREEK: I don’t disagree with Bob or Karst. I
think we can do all of the above. I think we have to have
emergency clinics, holding clinics, get people right into
treatment now. I think we can do it in six months or a year. I
don’t think we should stop there. I don’t want any policy maker
to think we should stop there. We go on from there. The reason
we have had this problem come along is we stopped there in the
middle 1970’s, didn’t go any further, and the public became
alienated against all kinds of treatment, because they didn’t see
people getting well. I want to see all of the above, fast, get
people into treatment, then expand all the resources. This
country is incredibly talented. We can do it all in three years
and we can do the emergency in six months.

270

 

 
- DR. PRIMM: That. was 47 seconds.

MS. COLETTI: I agree with all the above but I don’t
agree with the mechanism. The mechanism that has taken place
over the last 18 months with the new Federal money has been
deplorable. It is not the Federal Government’s fault but, a lot
of the states had not developed their state plans to get their
drug treatment money and to get their Department of Education
money, and their criminal justice money. The Feds have taken a
bad rap for it, as a matter of fact. The money came to the State
of Florida and one of our key legislators on Appropriations found
that it was some pot of money that she could play games with and
held it up for 9 months. That has happened throughout this
nation.

I think any recommendation of immediate funding to
relieve the overcrowded treatment system needs to take a look at
some direct funding of programs and not put it in the hands of
some greedy legislators.

DR. PRIMM: Dr. Crenshaw?

DR. CRENSHAW: Not to forget your point, which I think
was leading towards something very important about the use of
drugs for sexual activity. What I think society doesn’t
appreciate is that a majority certainly of people who go into
drugs do it for a perceived or real idea that this drug is going
to enhance their sex life. The two drinks to make the woman
more available sexually, is an avenue to alcoholism, the cocaine
increasing libido, and when we hear about the end stage
sexuality of individuals who are tired, we forget that in the
beginning they were using drugs to pick up their lagging sex
lives. That’s in response to the whole category of drugs that
are abused in the delusion or the illusion or the reality that
it is going to make a difference in their sex lives. We can’t
overlook that angle.

I would like your comments ‘on whether a conclusion I
have drawn is overly simplistic or not}. You are all familiar
with antabuse and the way it was used in the past before AA
caused it to be less popular.

 

I have heard from the gay community an interest in
antabuse and also narcotic antagonists as possibilities in the
actual treatment of AIDS. I know a little bit of research is
beginning with regard to antabuse in particular, but it seems to
me that this is a drug where we know that the side effects are
relatively minimal compared to drugs like AZT, and it is already
an approved drug, so you don’t need all the start-up costs and
FDA approval, and the fact is that it is available for research
today. If it were to turn out, and I don’t know that it will,
nobody does, that antabuse were relevant in the treatment of

271

 

 
 

 

AIDS, would it not also help-- or any of the narcotic antagonists
--since you can’t drink when you take antabuse, the immune
suppression of alcohol and the problems of multiple substance
abuse?

Will you comment? What can we do if you think this
would be wise to pursue, to accelerate the research, since it
shouldn’t take too long? Lastly, wouldn’t this be an accessible
avenue for you to get more research funding if you were studying
this along with your direct treatment programs?

DR. KREEK: I think the point is a very good general
point, whether it is antabuse or an opiate antagonist or any
other agent which is out there that may help in direct immune
function normalization. Today, I was painting you a picture that
we are beginning to see that a long acting opiate such as
methadone may in fact help.

I think one thing we have to be very careful about is
we must not jump too quickly to an agent which has not yet been
proven to be efficacious.

DR. CRENSHAW: My question is we need to do the studies
to prove it. I am asking why aren’t the studies being done.

DR. KREEK: I think studies have now been launched to
look at each of the two agents you mentioned specifically. I
think other studies are being launched to look at other drugs
being used in treatment of other dependencies, such as the
possible use of tricyclic antidepressants for the treatment of
cocaine, look at those drugs to see what they do, either positive
or negative, to immune function, to neuroendocrine function.

I think wherever there is an agent which may serve a
single or dual purpose, and in this case we are talking about
agents which could serve a dual purpose, it is essential to
support studies of a proper rigorous type, both at the bench and
in basic clinical research. I must underscore the latter because
we are different than any of the other species related to us.

It is very important to support and nurture such
research and to be quite sure that research doesn’t take a second
position to other possibly more spectacular sounding new
breakthroughs.

If indeed we could get two for the price of one with
any one of these agents, it would of course be very exciting. We
must be very, very cautious that the research is done before the
promotion is done. I cringe when I see people afflicted either
with AIDS disease or who are simply antibody positive and know
what the time table will hold for them in all likelihood, latch
on to any new drug. We have seen this with each of the two you

272

 

 
 

 

wo:

mentioned specifically, antabuse and opiate antagonists, and rush
into programs to get these or try to buy them someplace when the
data is not there to support or fails to support their usage.

I support exactly what you have said, appropriate,
rigorous research in a timely fashion.

DR. CRENSHAW: That is why I think it is important and
unconscionable that this research wasn’t done years ago. It is
a-ailable, it shouldn’t be done on a magician’s level.

MS. COLETTI: Dr. Crenshaw, Dr. Primm, perhaps you
could find out if Dr. Schuster would share the research portfolio
of NIDA. They have just reviewed that portfolio and it might be
of great interest to this body.

DR. PRIMM: I will ask Dr. Schuster to do that.

DR. SERVAAS: My question is to Ms. Coletti. I’m so
happy to know about you. I wonder if we couldn’t clone Shirley
Coletti in other states. What success have you had in trying to
help people like yourself in other states who want to do what
you have done?

MS. COLETTI: To some degree, through the National
Federation of Parents for Drug Free Youth and through a new
mechanism called OSAP, the Office of Substance Abuse Prevention,
which has funded between 150 and 180 grants for high risk youth
throughout the nation, we are doing a lot to build a
constituency, of parents and getting parent organizations
throughout the country involved. We have about 30 solid state
parent networkers that are working just mobilizing their
community and really starting where we started 17 years ago.

I guess we were fortunate that we had the need, and
then number two, the foresight to go forward and develop a
comprehensive program. The parent movement is alive and well and
strong. I encourage all of you where you have them involved in
your community to get behind them and give them some help.

DR. SERVAAS: Thank you.

MR. MILLS: I might add, Dr. SerVaas, since I Know you
are from Indiana, Jean Pock is a wonderful lady you ought to get
to know in Indiana, if you don’t know her already. She is head
of one of the affiliate organizations that Shirley just spoke of
and doing an excellent job.

DR. PRIMM: Dr. Lee?

a
DR. LEE: There has been some anxiety expressed that
we may not give you the support that you want. Where you can be

273

 

 
 

 

absolutely sure that this Commission is going to give you the
support that you want. Maybe not all of it because all of it
adds up to a possible $200 billion. We are going to definitely
recommend support for drug treatment programs.

Doctors, however, to my way of thinking, always come in
on these things too late. During our professional careers, drug
abuse has skyrocketed. We have to address the other end of the
equation. I think personally what we are going to have to do
in this country, is go the Coletti route, which is that we have
to deal with the mothers and fathers first, we have to deal with
the smallest possible units in society, and that is where the
money has to be spent. We have to stop these people from
getting on these drugs.

> One question; what does the rest of the panel feel
about Ms. Coletti’s containment policy for non-compliant
carriers?

DR. DeLEON: Fundamentally, there is sense to that idea
that is supported by what research we have. Let me just say
this; we know that particularly among IV users and also younger
clients, that some proportion of individuals are impelled to
come to treatment on what I would call intrinsic motivation.
Either they are personally suffering or they wish to change to a
positive lifestyle. These individuals in fact are very good
prospects for any treatment.

However, the larger proportion of individuals who come
to treatment generally come under some kind of outside pressure,
what I would call extrinsic pressure. Often that pressure is
simply the absolute frustration of losses, losing relationships,
money, jobs, often criminal pressure, violence and some small
proportion of those are actually directly referred from the legal
system.

The point is the nature of the disorder as well as some
characteristics about the addicts tell us they differ. Some do
come under internal, some under external pressures. I think we
have to acknowledge the data on that, despite the fact that we
know those who come are in pain when they finally come. That
means any discussion about a policy, a social pressure policy,
has to be based upon what we know about who will respond to
social pressures; who will respond well under let’s say legal
referral.

We know that for many years, the highest proportion of
referral rates of addicts coming into treatment was among the
young rather than the old, young people don’t want to come into
treatment, they don’t feel they need treatment. Even though they
might be quite destructive to themselves and others, they need
the external force to come in. \

\

274 «|

 

 
 

 

However, we even have failures among them, force alone
doesn’t do it. Pressuring them into treatment doesn’t do it.
Everything we know about retention in treatment is that legal
referral does affect retention in treatment, social pressure
does affect retention in treatment but it is not a sustaining
effect, that is most of the effect is seen early in treatment,
hold them earlier, longer.

Then, as significant treatment influences take over,
the effects of that original legal pressure will tend to wear
down. So my answer to this, unfortunately like most answers
are, it’s complex, and the issue of containment or social
pressure policies are real. They have to be considered, but they
must be considered in the light of subgroup differences among the
addicts involved, and that’s going to require rapid clinical
research testing and, in a sense, beginning to develop the
information we need to do that in terms of wise policy.

DR. PRIMM: Admiral Watkins, you have the last say.

CHAIRMAN WATKINS: One of the things that I’ve learned
from being in this town for 20 years is that when you make a
proposal to merely throw dollars, at a new capability, you lose
out. And so one of the things we’re going to want on this
Commission when we go forward is, we want a winner, and we don’t
mind asking for money, if we’re going to have a winner.

But we’ve got to address issues like, what’s it going
to take to achieve the 100 percent capability that you want?
How fast can you really do it? What are the obstacles to doing
that? “yh

We’ve heard presentations about monies that were
appropriated by the Congress that still aren’t used by some of
our heavily impacted states in the country. Now if we go
forward and just recommend spending several of billion dollars
this year and in the five-year program this many, it’s going to
be shot down on the basis of the anecdotal reports that the
states can’t spend it that fast, you can’t train the people to
put in the facilities, you can’t get the medical support, you
can’t do the referral you want to\do because we don’t have the
other elements in place. And so somehow we need an integrated
strategy. If we want to really go after this, which we do on
this Commission, and get the drug treatment capability of this
nation up to where it ought to be, so these people seeking
treatment are not put back on the street with no place to go.

Now we need to have an approach when we go to the
President that says, we’ve looked at this across the board. We
think this is a balance between federal, state, local, and
community-based responsibilities. We think it ought to move this

«275
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\

 

 
 

 

way, and, Mr. President, by the way, here are obstacles that
we’ve found over the past.

It would be very important for me to hear from you what
are the obstacles other than dollars-- for example, you can’t
open a facility because of local attitude in the community,
which we have found in some of our trips out there, how do we
highlight that to make those communities feel embarrassed that
they’re not American.

Now have any of you thought in these terms
sufficiently to lay out a skeletal structure of such a national
strategy to get drug treatment that you all want on its feet as
quickly as possibly in this deficit year that will be funded?

MR. BESTEMAN: If I may just point out, we do not have
a national shortage of physicians for the first time in several
decades. We don’t have a national shortage of social workers.
We do have in clinical nursing possibly, and that’s greatly a
dollars-and-cents issue and hours of duty.

We don’t have a national shortage today of people who
are in recovery, which we had in the 1970s. So while we may not
have the personnel standing in the wings waiting to come to us,
they are there, and they weren’t there 15 years ago, and we did
it. And what we did was make a clear federal statement and said,
this is the goal of the Federal Government. There will be no
waiting list, period.

And then we went to what at that time was the Big Nine.
Those are the nine largest states in the country with the largest
needle-sharing populations in them. That was our first layer,
and we went to the mayors of the big cities and we said, we’re
all going to get in this together, and we’re going to accomplish
it, and we’re going to work around some zoning problems and some
communities and so on.

Now drug treatment centers didn’t wind up always in the
most ideal locations. "Not in my neighborhood" existed then,
too. But they did wind up in the communities, and it was
successfully done. And it varied in time, but at one point the
Federal Government said we’ll put up 60 cents on the dollar, and
the state and city and county, you figure out how the other 40
cents is going to get there, and here it is, but you’re not going
to get it unless you come up with the 40 cents. And they did.

There were all sorts of formulas over time. When we
were in a roaring hurry the first six months, a now defunct
agency put up 100 percent of the money, but only for the first
year, warning everybody that come Year 2, you’re not going to be
in existence except under different financial circumstances.

276

 

 
 

But it was, if you want to call it a full-court press
in which no part of the federal system had an equivocal message
and in which states, because they had a high investment, joined
in, and cities did and communities. And as I read the sense of
at least the treatment and management community that I’m
familiar with and when I read the media in terms of a public
concern, I think we have reasonable cause to work together.

But so far, nobody has stood up and said, I’m going to
lead this, and that specifically is the goal, and therefore
everybody is sort of welling about like a herd that doesn’t have
a leader.

CHAIRMAN WATKINS: We are ready to do that. We’re
ready to make that recommendation. This is why we’re having
these hearings now. We want to have an interim report to the
President in February that addresses this issue, because we think
it’s so urgent.

There must be somebody who has looked at this strategy
and said, this is how the nation can get there, because we know
that that’s realistic. We know that timeframe is realistic and
that we can produce at the grassroots level what we have to. We
can find the right places. We can build the right facilities,
and we can train the right people. And those are the shared
dollars that we need to do it. And that’s what I’d like to see.

Now if you have some recommendations of how we can do
that in the very short period of time to at least put a skeletal
framework on that kind of approach, that would have a much
greater chance of sailing through, in my opinion, at the highest
levels of government and move through the Congress and calm a lot
of waters now that are pretty stormy on this issue, and I think
if we could get very definitive we would have a much greater
chance for success.

So who can do that? What is the best vehicle to do
that?

DR. NEWMAN: Admiral, I’m back to being a Pollyanna
again. I agree completely with the cost. I think there is only
one obstacle of any significance whatsoever. It’s not money,
it’s not facilities, it’s not overcoming community opposition.
It’s a clear commitment that we will indeed insist upon immediate
treatment for everybody who wants it. That commitment is all it
takes.

Let me give you a great analogy. In New York City, we
have a big problem with the homeless. There were a whole host of
problems in providing shelter immediately for everybody who
wanted it -- money, not in my backyard, facilities, on and on.

277

 

 

 
 

A judge said to the mayor, Your Honor, I’m telling you
you’ve got X number of months to provide immediate shelter to
every single homeless person in New York City who wants it. And
with that commitment, albeit an extraneously imposed one, all of
the other problems fell into place.

And I submit to you, Admiral, that if you wait for
these various minor obstacles -- money, facilities, and so on --
to be resolved, it’s not going to be five years; it’s going to be
50 years, and the deaths resulting from the delay are going to
number in the hundreds of thousands.

There is only one thing missing, only one, and that is
a firm commitment that we will make treatment available. And
when you have that commitment -- and it doesn’t cost a nickel to
make it -- you can be sure that you will be a very, very big step
toward achieving that goal, just by staying that commitment.

CHAIRMAN WATKINS: The leadership has to be there, and
the statement has to be there but the worst thing we can do is
fail to deliver on a commitment.

I‘m not convinced it’s a no-resource issue by the
Federal Government. If you’re saying it can all be done at the
local level, I don’t believe that’s going to be the case,
because we have to look at a lot of expenditures here.

We’re with you on the leadership. I’d like to feel
more comfortable that we had some good, solid analysis to share
with the President.

MR. MILLS: I’d like to respond in a different way.
I’m really pleased that you’re asking the kinds of questions and
looking at some type of a master strategy, because obviously that
has to come about. You can listen to all of us as we come up and
tell you what the needs are, and then you can go with a very
simplistic solution. There appears to be a need for more
treatment, and so that’s what’s needed. And obviously that’s
oversimplified, and it’s inappropriate.

We have the capability. Let me give you just one
state’s perspective. In Indiana, when I sit with my colleagues
from New York and California and New Jersey, and we talk about
this issue, we’re kind of in different worlds. I want you to
hear something from an Indiana perspective, the heart of the
country where we’re looking to keep this thing from ever getting
to the place it is on the East Coast and the West Coast.

I hope we learned something from the events of this
past year and the Omnibus Drug Act and the way in which in very
rapid fashion with little foresight, with little thought, major,
major expectations were set up. As I looked at that developing,

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in Indiana we had just completed a year and a half study
involving just countless people and pulling together all the
people that needed to-be talking about this issue of do we really
have an alcohol/drug system in Indiana, and can we have one, and
what would it look like if we had one, and we put it together.
It’s a nice, big, thick document, beautifully laid out, six years
to develop it, the cost that would do it, how it would be done,
all the training issues addressed, all the kinds of things that
you’re talking about, and then the Omnibus Drug Act came along.

And we said, great; we already have a plan, something
that we can apply some resources to. And the first thing we were
hit with was, well, how much are we going to get, how much to
apply to it? How does it fit with our funding cycle, because we
do plan for things? We don’t just throw the money at them when
it comes.

And our funding process is to get competitive
proposals, to get the people who are interested in providing
programs and let them give us their best shot and let us choose
from those programs the best programs and the ones that are most
cost-effective and will work.

And that takes time. We study those things. We ask
for them around January, we make decisions in May, and we begin
programs in July. And so if you look at the time clock that
developed over the past year, we found at that time that the
State of Indiana was looking at that process, Congress had not
even decided yet how much each state was going to get, so we had
to make provisional plans. Well, we’ll do this if we get this;
we'll do that if we get that.

The next thing we learned when we got our award notice
was that we were expected to spread that money out over two
years, and then there was some question: Was it two-year money,
or is it one-year money?

We planned for it to be two-year money. We’re one of
the states, if you look at the data, that only drew down about
half of its Omnibus Drug Act funds to date, and very
appropriately we’ve done that in good conscience, as much
treatment as was needed. Knowing the problems of starting up
programs and the inefficiencies of the start-up and the closing
of programs, I could not take that full measure of dollars that
was allocated to the State of Indiana and throw it into new
treatment programs knowing that I was going to be faced at this
time of the year, saying we’ve.got to close your doors now
because that money needed to last two years, and we only had
planned for it to last one year. ‘ \

So yes, that money has not been spent. Will it be
spent? You bet your bottom dollar, and it will be spent

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according to a plan that we constructed in Indiana for the
long-range development of our system. It requires more
resources. Following this, I’m going to be talking to my State
Legislature about that too, because I don’t expect the Federal
Government to do it all.

We don’t have a funding strategy that combines the
state and federal and local resources in any kind of coherent way
in this country to fight this problem. Every state goes about it
differently. When you look at the mix of state and federal
dollars, who’s responsible? Well, we’re all responsible. But
it’s going to take that partnership to sit down and work out the
strategies. And we have the talent, we have the expertise, but
we don’t have a master strategy now, and that’s what I think
we’re going to be looking to this Commission to give some
direction to us -- pulling those of us together that need to be
pulled together, so that national strategy can take place.

CHAIRMAN WATKINS: Mr. Mills, we’ve got to stop.
You’re very close to my thinking. I think that we’ve got to
prepare such a strategy. ;

I would like very much if you would write me a letter
relating your experience in Indiana and suggesting how we might
build such a strategy, who should do that, how would we put it
together to be most effective without a big bureaucracy. We need
people like yourself and a handful of others who have the same
adrenalin flow you’ve obviously demonstrated here today, and see
if we can’t package up something that then others can put more
flesh on the bones of, and we can begin to really fill the
coffers here that are necessary.

After all, we’re talking about a factor of five
enhancement of what we’ve got out there today, and that’s a
significant change. We think it’s the right way to go on this
Commission, but I want to win it, and not just talk in general
terms. The more specific we can be, the greater the chance for
success.

We are very privileged to have had all of you here.
It’s been a very important session for us. You are obviously an
extremely talented group that’s taken the time to come and share.
your views with us.

We had a rocky start on this Commission, and we’re
going to have a good, solid finish with help from people like
you. And we thank you for coming and spending these few minutes
with us, and we’ll have to shift to the next panel. Thank you
very much. tty

DR. PRIMM: Good afternoon. I/’d like to welcome our
last panel for the day on outreach education: Ms. Jackson, Dr.

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Feldman, Dr. Wiebel, Mr. Bixler, and Ms. Bowden. You may begin,
Ms. Jackson, presenting if you would. I’m sorry we’re starting
late, but if you would keep to your allotted five minutes, we
would be highly appreciative of that.

OUTREACH EDUCATION

MS. JACKSON: I’1ll try. I appreciate the opportunity
to come before you today and fill you in on what’s been happening
in New Jersey. You may be aware that New Jersey, since the
beginning of the epidemic, has had the highest percentage of IV
drug users amongst its AIDS cases of any state in the Union, and
that contributes to the fact that we also have the highest
percentage of minorities and the highest percentage of women AIDS
patients of any state in the Union.

And what this has meant to us is that we have not had
that core of middle class gay activists that have formed the
backbone of voluntary AIDS efforts in so much of the rest of the
country. As a result, it has fallen to the Department of Public
Health in the state to develop a program of outreach and now
increasingly of support services that is essentially based in the
network of 80-odd voluntary, non-profit drug treatment programs
in the state, which have become essentially our Gay Men’s Health
Crisis or a Shanti Project in the absence of having such
activities already there.

We have developed a number of approaches to reaching
out to drug users that we feel have been quite successful since
1985, for example, when we pioneered the use of ex-addict street
educators. We now have gone from eight part-timers of those
people to 28 full-time ex-addicts working out of all modalities
of treatment in rural, suburban, and urban areas.

The efficacy of this approach, I think, has been well
documented in New Jersey as well as in New York and California,
in that about half of all people coming in intake are telling us
that they are coming in because of the fear of AIDS. The
knowledge assessment level of incoming patients is very high. In
the three major modes of transmission, for example, about 90
percent of incoming patients are already aware of them when they
come in the door. The information is somewhat lower on the part
of blacks and Hispanics than it is on the part of whites;
however, after a one-hour AIDS education session, all three of
these groups grow very close together and show good understanding
of some of the major data about AIDS. |

We also have in the drug treatment programs
coordinators whose job it is to develop AIDS programming for the
patient population, also to keep the staff up to date and
supported. You can imagine, if you will, what’s happening ina
single program in Jersey City that has experienced 55 deaths

281

 
 

among its patient population this year alone, and work as well
in the community.

The beauty of using these community-based drug
treatment programs is that their staff is familiar with the
communities within which they work and reflect the ethnic
composition of the communities, so that you get a more
grassroots effort than you do when a public health agency like
the State Health Department comes down from on high and attempts
to impose information.

We’ve got mobile vans in two cities. These vans are
carrying a physician in a facility that’s able to be closed off
by a curtain, so that upper body physicals can be done, referrals
made, and information sought in private. These are relatively
new in the street, but we are finding that they have not failed
to leave people standing in the street when it became necessary
for them to close and return to the drug treatment program where
they were based. We also have some peer-oriented youth training
going on, hoping to hit those kids who are not yet intravenous
drug abusers. And another program that we have gotten in the
field that I want to describe to you in a little more detail is
the coupon program.

To return to that in just a minute, I want to make it
clear, I don’t want to reiterate what was said in the last panel,
but we have seen, because of these outreach efforts, an
overwhelming increase in the number of patients wanting to get
into treatment. In New Jersey, we instituted client fees as a
necessity in 1981, and it now costs anywhere from $60 to $175 to
get in the door, and anywhere from $20 to $40 a week for
methadone maintenance treatment. Therapeutic communities also
have intake fees that are quite high.

Even in the face of this, all programs in all
modalities are over capacity. What’s important to realize,
however, is that the composition of the patient population has
changed, so that since 1981 we have seen a steady dropoff of
black males, for example, who tend not to have a third-party
mechanism such as Medicaid and not to be able to afford to get
into treatment.

The coupon program that I mentioned to you earlier is
illustrative of what would happen were treatment to be free and
immediately available. We’ve printed 1000 coupons, that were
redeemable for free priority immediate treatment, and we had them
distributed by the network of ex-addicts. 970 of those coupons
were actually distributed, and 84 percent of them were redeemed
at the local drug treatment program. Of that 84 percent that
redeemed coupons for treatment, the average age was 33, and 45
percent of them had never been in treatment before.

282

 

 
 

 

“Of the ones who had been in treatment before, the
average mean year of last treatment was 1981, the exact year that
we instituted patient fees. The majority of redeemers were black
males. So we feel that this demonstrates that there’s a
tremendous unmet need on the part of people who are currently
unable to access treatment, who will do so when it’s made
possible for then.

I have to tell you that since 1969 when I began doing
street work in Newark, there has never been sufficient treatment
capacity to take the patients in who wanted to come in. This is
without outreach, without many different kinds of treatment
programs geared to the needs of minority groups, of gay IVDAs, of
women drug users just as they currently stand. We have never had
sufficient capacity to take the people who want to come in.

So I think the idea of mandatory containment, while it
has some attractions, would best be postponed until we begin to
get to the end of those patients who want to get into treatment
and who can clearly profit from it. We haven’t even begun to get
to that group yet.

I want to make it clear also that the patients who are
coming into treatment, these IVDAs are a much sicker group of
people than they were ten years ago. 56 percent of the patients
in the program that I mentioned to you earlier where 55 people
have died this year were infected in 1984. That’s an actual
statistic, not an estimate. They are getting sicker and sicker |
and sicker. They are developing AIDS-related symptoms; they are
developing tuberculosis, and they cannot be people that are
placed on methadone-only waiting lists. They require a full
range of services for their illness to be dealt with and for the
potential of problems such as tuberculosis to be contained,
because that’s getting to be a major public health problem in New
York and New Jersey as well.

I think that I’1l stop here. I think I’ve used my five
minutes, but I have submitted written testimony, and I’d be happy
to answer any questions that the panel has later on.

DR. PRIMM: Thank you very much. Dr. Feldman?

DR. FELDMAN: Dr. Primm, Admiral Watkins, members of
the Presidential Commission on the HIV Epidemic, I am the Project
Director of the Midcity Consortium to Combat AIDS in San
Francisco. I would like to thank the Commission for the
opportunity to express my views and those of the consortium on
the HIV epidemic among intravenous drug users.

The consortium came into existence a year and a half
ago to address the second wave of the AIDS epidemic expected to
occur among intravenous drug users, the first being a virulent

283

 

 
 

 

outbreak among gay men. At the time, the outlook was bleak, and
San Francisco was expected to repeat the experience of New York
City and Northern New Jersey, which had already experienced a
doubling of AIDS cases among IV drug users every six months until
it reached its present estimate of a seropositivity rate of
approximately 60 percent.

In fairness to New York, the epidemic had already
taken its toll by the time the city officials identified its
existence. Drug experts, however, were predicting similar
scenarios for other major urban areas where large concentrations
of IV drug users existed. The common wisdom that prevailed
alleged that intravenous drug users, popularly identified as
heroin addicts, were an incorrigible group of antisocial
pleasure-seekers whose psychological profiles made them poor
candidates for the kind of behavioral change needed in order to
prevent the spread of HIV within this population and then to
sexual partners.

In San Francisco, we began our project first by
identifying the location of intravenous drug users. From the
beginning, it was clear that the largest majority of IV drug
users were not attached to existing drug treatment programs.
Later our research found that many IV drug users had little
desire to seek treatment. Despite considerable previous
experience with IV drug users, our staff believed it was
necessary to gain current firsthand knowledge of existing needle
scenes and the ways hypodermic syringes were shared. Throughout
this ethnographic research effort, we attempted to construct a
strategy of intervention which could be tailored not simply to IV
drug users, but specifically to the various cultural contexts in
which IV drug users carried out their activities.

Several significant findings were made. The Commission
has in its possession copies of the paper Dr. Patrick Biernacki
and I prepared for the technical review meeting on needle-sharing
among intravenous drug users which NIDA held in Bethesda,
Maryland on May 18th and 19th, 1987, and which Dr. Primm
attended, and the evaluation of the Midcity effort which Dr. John
Watters presented at the Third International Conference on AIDS
held here in Washington, D.C. this past June.

In Dr. Biernacki’s and my paper, we emphasized that the
overriding issue in addressing the AIDS epidemic among IV drug
users is the public policy of prohibition of using narcotics and
dangerous drugs except through medical channels. A national
policy which makes the total activity of non-medical drugs and
narcotic injection illegal. In most states, notably California
and New York, two of the major centers of the HIV epidemic, I
might note, hypodermic syringes are likewise regulated, so the
possession of them for the purpose of injecting narcotics and
drugs puts IV drug users at risk for arrest. As a result, the

284

 

 
total activity from the point of purchase to the point of
injection takes place under clandestine circumstances. The
result is that the implementation of this policy separates IV
drug users from legitimate society and creates a situation of
suspicion and distrust, which makes any intervention difficult.

More important, for those people who will not or cannot
follow a path of abstinence, it makes needle-sharing a near
necessity. After examining needle scenes in San Francisco, we
came to the conclusion that unless some bold and aggressive
intervention designed to minimize distrust were created, San

Francisco would soon follow the path of New York City.

We began our street-based effort with a simple premise,
that the issue was control of a deadly incurable disease. Given
the gravity of the consequence of failing to succeed in this
task, other lesser considerations must be minimized. After
studying the available AIDS literature, becoming familiar with
the ferocity of previous epidemics, such as those described in
Hans Zinsser’s book, "Rats, Lice, and History," and after
important consultation with our colleagues in New York City, and
after considering our own findings which mapped out the potential
roots of spread should the virus further enter into these needle
scenes, we came to the conclusion that preventing new infections,
not necessarily stopping drug use, was our first and most
important priority.

Our plan was to train our community health outreach
workers, the acronym of CHOW, to be among other things non-
judgmental and then to send them directly into those natural
hangouts of IV drug users. By becoming familiar with the daily
routines of IV drug users and making themselves available in
critical situations, CHOWs develop trusting and confiding
relationships that enable them to deliver effective risk-
reduction messages that had credibility on the street.

I want to underscore one point. We do not condone
drug-using activities; we just do not pass judgment on them. As
part of our overall educational approach, we have developed a
protocol for a quick and easy method for disinfecting hypodermic
syringes that employs using common household bleach, and we
distribute samples of. bleach in convenient one-ounce bottles with
clear instructions on how to clean injection equipment.
Distributing bleach has become an important educational technique
in our overall plan. Similarly, we routinely distribute condoms
to the same populations.

These intervention strategies have created
considerable discussion around the country, particularly the
distribution of bleach. Some people see the distribution of
bleach as tacit approval, even encouragement of continued drug
consumption. Our position of aggressively, seeking out IV drug

285

 

 
 

 

users, educating them on their risk for infection from sharing
contaminated hypodermic syringes and through sexual transmission,
and then providing them with the means to avoid it, we believe is
a realistic one that is consistent with our priority.

Our strategy has evolved from our current street
research as well as previous street ethnographics of drug users.
It has evolved as well from an extensive study of the history of
drug policy in the United States and an examination of how those
past policies in the drug field impact this epidemic. After 60
years of a national policy of prohibition, it must be noted that
a significant portion of each generation has continued to be
attracted to injecting drugs and narcotics. Some observers have
stated that the prohibitionist policy and the way it is enforced
may, in fact, be one of the features that attracts adventurous
young people, many of them from disadvantaged communities, into
pursuing these deviant careers in the first Place.

But the persistence of the behavior is by now one of
the realities of modern life, not only in the United States, but
throughout the Western World. To prefer that IV drug users
refrain from injecting drugs is a desirable and laudable goal.

To deny them access to the means of preventing infection with a
virus that results in incurable and deadly diseases is a punitive
and malevolent policy that neither addresses the epidemic nor
achieves abstinence.

Our intervention in San Francisco has been shaped

Somewhat by our visits and correspondence with colleagues in the
Netherlands, a country whose leanings are stern, but principled
and humane. Like the Dutch, we take the position that injecting
drugs and narcotics is to be discouraged. In San Francisco, our
street-based program produces more referrals to drug treatment
programs than any other source, of course when those treatment
Slots are available.

For those IV drug users who continue in their career
lines, we stress the importance of carrying out such activities,
particularly during this epidemic in the healthiest ways
possible.

This approach has shown some preliminary success. We
hesitate to make major claims in this area. It is with great
caution that I bring to your attention the following findings in
San Francisco, which John Watters of the Urban Health Study has
authorized me to report, and I quote Dr. Watters:

"There was an approximate 50 percent increase in the
Seroprevalence of HIV during 1986-1987. The rise was from 9
percent in 1986 to 15 percent in 1987. There was, however, no
increase between the first half of 1987 and the last half of
1987, based on a sample of 1189 IV drug users in San Francisco.

286

 

 
 

 

While these data are very preliminary, and the six-month interval
between observations is too brief to draw conclusions, the data
suggest at least a temporary flattening in the trajectory of the
HIV epidemic among IV drug users. Although there may be other
factors that could account for this apparent attenuation in
seroconversion, the slowing effect has occurred simultaneously
with the aggressive outreach efforts of the. Midcity Consortium to
Combat AIDS. Thus the serological data tend to validate
independent studies in San Francisco that have reported dramatic
increases in the application of, ‘safe needle hygiene by IV drug
user.’"

Also Drs. Andrew Moss and Richard Chaisson of the AIDS
Epidemiology Group at San Francisco General Hospital have studied
methadone patients from the community where the Midcity
street-based outreach does not operate. They have noted a
spill-over effect and an adoption of needle hygiene by heroin
addicts. They state that preliminary analysis of 1986-1987 data
show, quote, "40 percent of the Iv drug users who said they
shared needles reported that they clean needles with bleach
frequently or always," end of quote.

Moss and Chaisson conclude, and I quote: "The bleach
program has penetrated far into those groups who utilize these
treatment programs," end of quote. Permit me to repeat. These
methadone patients are populations that have not been the
specific target of our community-based intervention but have
indirectly benefitted from the program.

In conclusion, in San Francisco, we have been
successful in introducing a new and bold outreach strategy to IV
drug users who are at risk for HIV infection with a minimum of
controversy and limited opposition to distributing bleach.
Health administrators from other cities and states have sought
technical assistance from us and have stated hesitation about
distributing bleach in their jurisdictions, because of expressed
opposition from policy officials who look on bleach as another
form of drug paraphernalia. In San Francisco, where we have a
Police Chief with both vision and a sense of responsibility to
the public health, a plan of cooperation has been effected which
balances the necessity for police to enforce the laws of the
state and the imperatives of stopping the spread of a deadly
epidemic.

As cities throughout the United States begin to mount
programs to address the HIV epidemic among drug users, it is
important to develop the kind of street-based intervention that
brings together qualified health educators, such as CHOWs, with
populations who have been traditionally stigmatized and who do
not normally volunteer for interaction with a disapproving
legitimate society.

287

 

 
 

 

Our program has demonstrated IV drug users willingness
to cooperate with the program. It shows a neighborly concern
for their well-being by distributing and following risk reduction
methods on a voluntary basis.

The support of this Commission for funding such
efforts throughout the country, but specifically in those major
urban areas where IV drug use is concentrated, would be an
important step to mobilizing resources toward stopping the spread
of HIV among drug users and their sexual partners. I thank you.

DR. PRIMM: Thank you, Dr. Feldman. Mr. Wiebel.

DR. WIEBEL: Thank you. It is a privilege to appear
before you today to discuss this most urgent devastating public
health problem. My background is that of a research
epidemiologist and ethnographer in the field of substance abuse
for approaching 15 years.

But in the last five years, my familiarity with the
problem of AIDS has escalated rapidly from a relatively detached
observer of emerging epidemic trends to that of increasing
involvement in programs dealing with AIDS education and outreach
intervention.

Some of the positions I have held during this recent
time period have included the coordinator for AIDS policy and
planning for the Illinois single state agency for substance abuse
treatment and prevention. Subsequently, I accepted a faculty
position at the University of Illinois Chicago School of Public
Health where I was director of an AIDS outreach demonstration
grant funded by CDC as part of the comprehensive AIDS prevention
education program and more recently the principal investigator of
one of the NIDA six city demonstration grants for AIDS outreach
intervention which. Dr. Feldman and I are both PIs in different
cities. I am also the principal investigator for a contract
awarded by NIDA to implement the Chicago model of intervention in
three other cities, those cities being Denver, Colorado; El Paso,
Texas; and Baltimore, Maryland.

In these capacities and in serving on numerous AIDS
task forces and commissions at the federal, state and local
level, I have cultivated a deep appreciation for the myriad of
issues and confounding factors that this Commission must deal
with in fulfilling its mandate.

To give you an overview of the program that we are
using in Chicago, let me try to briefly summarize. It is based
on a model that was developed by Doctors Patrick Hughes and Gale
Crawford at the Department of Psychiatry, University of Chicago,
some 20 years ago that for the first time combined medical
epidemiology with community ethnography as both a research and

288

 

 
 

 

intervention tool to first study and intervene in local
neighborhood outbreaks of heroin addiction in Chicago.

My first professional job was as a member of that team
and since then, I have used that model primarily as a research
model until the advent of the AIDS epidemic and my recognition of
the severity of this problem that was spreading throughout the
country.

At that time, the intervention component of that
Hughes model had direct relevance as a potential and promising
approach to deal on the streets with active IV drug users, not
affiliated with any existing institution that would otherwise
provide ready access to then.

Our first project was funded by CDC and I believe
demonstrated the potential that does exist for this approach and
I think two of the most important components of this again are
that combination of medical epidemiology and community
ethnography.

The medical epidemiology perspective, I think, is
particularly important because the AIDS epidemic is a dynamic
phenomena and any program to address that must also be dynamic if
it has any hopes of remaining effective over the long tern.

All programs, whether intervention programs or general
public health policies dealing with AIDS, must be flexible in
order to remain responsive in adequately addressing the
progressive patterns of infection.

I think that an appreciation for the epidemiologic
component allows us to understand that a program that is working
well in one part of the country won’t necessarily work well in
another part of the country if there are different stages of
epidemic progression. What is very successful in New York at a
given time may not at all be appropriate for other parts of the
country because of the differences in epidemic stage.
Furthermore, that we have to be flexible and maintain
programming that changes with the change in ongoing realities as
infection spreads.

The second part of our programmatic component is that
of community ethnography in a very similar vein to that which Dr.
Feldman just described in relation to San Francisco’s program.
This also is very important because sociologists and
anthropologists have long recognized that different groups and
sub-cultures in our pluralistic and heterogeneous society view
the world in significantly different fashions. The norms
regarding what is considered to be socially appropriate behavior
and the values which define what is considered to be more or less
acceptable vary considerably between Blacks, Hispanics, American

289

 

 
 

 

Indians and Whites as well as between gays, IV drug users,
prostitutes or for that matter the clients of prostitutes.

A failure to account for such differences, invariably
will moderate the potential impact of any program that we attempt
to mount and it is important to both understand the world views
of the people that are the targets of our intervention
programming in order to insure that, and if I can make this
analogy, the round peg of public health perspective is going to
fit into a triangular hole which is the world view of the
subcultures we may be dealing with.

Through utilizing ethnographic research techniques and
employing indigenous staff in our outreach activities, we are
able to further understand and account for such differences
within these subcultures and hopefully maximize the effectiveness
of intended intervention outcomes.

Let me briefly review the specific objectives of our
program. The first is to increase AIDS awareness in target
populations. That may seem obvious but there is an amazing
amount of denial out there in relation to the clear and present
danger that AIDS poses for populations that have not already been
educated. I have run into a myriad of rationales why AIDS
should not be a concern to IV drug users; that it is a gay
problem; that it is a racist or government conspiracy to get rid
of people; all sorts of hair-brained ideas, anything sufficient
to allow them to ostrich and not face the realities of this
problem.

The good news is that we have found that once we broke
through that denial that individuals are very receptive to
further education.

We also need to establish the foundation of knowledge
which will be needed to promote behavioral change. Our second
major objective is to promote individual risk assessment. We
need to convey the factual information on a personal level of the
conditions which are necessary and sufficient for the virus to be
transmitted.

We need to review individual’s previous and current
behaviors and their lifestyle patterns that may contribute to
risk. Then we must utilize the concept of relative risk to :
establish for an individual unacceptable levels of risk. There'‘is
risk involved at all levels of human activity and it is the issue
of what is unacceptable that can be used as the springboard for:
determining where behavior can be changed for any given person.

We need to provide viable options to high risk
behaviors. It is not what is acceptable from our perspective
that is likely to change the behavior of an addict on the street.

290

 

 
 

 

It is what is an acceptable alternative from his perspective and
in our program what we do is find any level of agreement where we
can secure a commitment to implement a level_of risk reduction
and then work with that as a stepping stone to what we all agree
are the preferred levels of risk reduction, entering treatment,
ceasing IV drug use for a whole range of public health reasons in
addition to that of AIDS.

Those are the preferred goals but they are not
necessarily nor do I believe they should be the starting points
for securing a commitment to risk reduction.

We need to reinforce risk reduction measures over time.
Any level of commitment secured at one given time is going to
reduce itself over time unless there is an ongoing level of
maintenance of high levels of AIDS awareness, multiple messages
in multiple contexts.

We need to reinforce compliance with existing risk
reduction efforts and then identify obstacles that are
experienced in order to develop preferable approaches that are:
likely to experience higher levels of compliance.

Finally, we need to encourage prevention advocacy among
the IV drug using groups. We need to promote advocacy roles for
jndividuals within their social networks. In effect, this is

exactly what allowed the gay community to respond so effectively
and, I might add, internally to the external threat of AIDS.

There is a very large difference in the social
structure in the social world of addicts, however, that requires
an external impetus to begin that. There is no junkie press.
There are no existing agencies or institutions aside from
emergency rooms and treatment programs which deal with chronic or
acute drug problems that IV drug users have.

So we must create that internal movement that will
allow them to make sure they tell their friends about the real
and present dangers and to examine for themselves viable options
for risk reduction that can help moderate the future epidemic.

I am sure I have overrun my time. I want to thank you
and offer you all the encouragement I can in your work.

DR. PRIMM: Thank you, Dr. Wiebel. Mr. Bixler.
/ wR. BIXLER: Thank you. Dr. Primn, Admiral Watkins,
members of this distinguished panel, thank you for this

opportunity to address you concerning the major problem of
dealing with AIDS education in the IV drug using population.

291

 

 
 

 

Briefly to tell you a bit about myself, I have been
involved in substance abuse training since 1970, first with the
Drug Dependence Institute, the Department of Psychiatry at Yale
University and since 1978 with the New York State Division of
Substance Abuse Services.

The Training Institute of Narcotic and Drug Research,
Incorporated is responsible for providing training for the staff
of the Substance Abuse Treatment System throughout New York
State.

As deputy director for AIDS education and training, I
am responsible for AIDS education and training for that treatment
system within New York State. Our staff offer eight different
courses dealing with AIDS and chemical dependency and have
trained over 2,000 staff during this year.

- Some of the major efforts that we have been involved
with include, the state has begun to implement a programmatic
approach to AIDS prevention oriented toward behavior change and
it is called CARE, Comprehensive AIDS Risk Reduction Effort and I
believe each of you have a copy of that document.

In combination with CARE, we have hired 50 different
AIDS coordinators to work within the programs to provide an AIDS
lens to assist those programs in looking at AIDS issues and the
way in which those issues impact on their treatment system.

In addition, we have outreach efforts working with the
IV drug users and their sexual partners in the communities to
provide them information and referral to antibody testing and
for treatment.

Finally, we have an extended entry program designed to
provide extended detox for individuals who would be on our
waiting lists and not otherwise have treatment available to then.

There are several major concerns that I would like to
address, six in particular, dealing with AIDS prevention and the
intravenous drug abusing population.

AIDS and chemical dependency are inextricably
interwoven in this country. One cannot respohd to one and ignore
the other. Efforts need to be made at every possible contact
point to educate the intravenous drug users and their sexual
partners about risk reduction.

From street corners to shooting galleries, to
laundromats, to clinics, to prisons, to hospitals, to programs
sheltering the homeless, the substance abuse treatment programs
themselves, there must be ongoing education. |

292

 

 
 

 

=
&

-This education must be in a language and style that “is
meaningful to the population to be educated and geared to ~
teaching skills ‘and strategies necessary for risk reduction
practices. . oe

Second, intravenous drug users are both capable of
changing and willing to change their behavior but such change
requires learning new skills, developing new strategies, and
practicing these ina supportive peer setting.

Such changes take time. There are no quick routes to
behavior change. We must be cautious of prevention efforts that
create the illusion of responding effectively to AIDS but that do
not produce the necessary change in behavior. The bottom line of
AIDS prevention is sustained behavior change. If we do not
accomplish that, then we have failed.

Third, there needs'to be a recognition that just as the
disease is spread through individual acts so prevention can only
be successful through individual change of those acts. Thus,
successful prevention cannot be mandated.

It can only be accomplished through a working
partnership between the educator and those who are at risk. We
cannot force intravenous drug users to change their behavior.
However, we can work together with them and their sexual partners
in exploring and practicing ways they can protect themselves and
others from the spread of the disease.

This concept of partnership is critical. It isa
disease not people that we need to combat, and we cannot
successfully fight it without a partnership that includes those
who are infected and those who are at risk.

centers for AIDS prevention. Prevention for the IV user is more
complicated than for the general popu ation. It requires not

Fourth, substance abuse sti programs must become
Iso dealing with a chemical

only changing sexual practices, but a
dependency.
\

AIDS education that focuses |on sexual transmission
while ignoring the problems of addiction will be of limited
value, and substance abuse treatment that ignores the risk of
AIDS will be equally limited.

Treatment centers offer a central location that
provides contact with a population not otherwise easily
\ accessible. Programs already have a working relationship with
 \ elients in treatment and AIDS education|can be incorporated into
|. that treatment process. |

 

~~ 293

 

 
 

 

Tragically, there is a shortage of substance abuse
treatment centers at a time when there is a critical need for
them in fighting the epidemic. We must do more to expand
treatment services.

. Fifth, many of the problems in addressing AIDS
prevention and IV drug use are reflections of problems that are
all too familiar to us in substance abuse treatment. The
problems of poverty, inadequate health care, poor nutrition, and
high unemployment that plague our Black and Hispanic communities
have existed long before AIDS.

~,

~~

For far too long, drug abuse has taken a
disproportionate toll on these communities. AIDS merely
magnifies their plight. They cannot be expected to carry this
battle alone.

Urban centers of New York City, Newark, Los Angeles,
San Francisco, Miami, should be declared federal disaster areas
with a major influx of medical and educational relief. Minority
neighborhoods with high IV drug activity in these cities must
have immediate assistance and it must be more than brochures,
condoms and a few bottles of bleach.

The attempts of condom and bleach distribution,
although laudable are beginning efforts and are limited in scope
and cannot be expected to accomplish the necessary immediate
outreach that is vital to these communities.

We need a concentrated aggressive combined medical and
educational effort in our urban minority neighborhoods to teach
people how to stop the spread of this disease and to assist those
who are already infected with getting the medical care they need.

Finally, a major barrier to AIDS prevention is a public
inadequately informed about AIDS issues and ill prepared to
accept HIV infected people into their communities. There are far
too many throughout our country who believe that they can best
keep AIDS away from their homes by opposing substance abuse
treatment programs and AIDS prevention projects.

We cannot reach out to the sick, the infected, or those
at risk in an atmosphere that promises rejection or punishment if
they identify themselves. We need a massive national public
education program that reassures the public that they need not
fear those who are infected, that individuals can protect
themselves and a national commitment to fight discrimination
against those who are infected.

We must prepare our communities to accept the sick
into their midst, support them in their efforts to live, and
provide much needed support for their families.

294

 

 
 

—_

 

| ‘There are thousands of families throughout the country
quietly, fearfully suffering alone because they are terrified of
what others will do if they discover that one of their family has
AIDS.

This suffering by no means is limited to our urban
areas. Just as there were thousands who suffered greatly and:
silently that never saw the battlefields of Vietnam so there are
thousands throughout this country suffering who have never seen
the urban battlefields of AIDS.

We need to band together as a nation to fight this
disease. We owe it to ourselves and to those who are infected to
assist our country in overcoming its profound fear of AIDS so
that we can face this disease together. > |
DR. PRIMM: Thank you, Mr. Bixler. Ms. Bowden. —~

MS. BOWDEN: Good afternoon, Mr. Chairman and members
of the committee. I’m Andrea Bowden, Supervisor of Science and
Health Education for the Baltimore City Public Schools. My
career of 17 years has been spent in public education, mostly at
the high school level, but I’ve also taught at the elementary,

middle, and college levels. In addition, I’ve done some
research and drug treatment evaluation with the Johns Hopkins
School of Hygiene and Public Health. In 1983, I was selected as
the first recipient in Maryland of the Presidential Award for
Excellence in Science Teaching.

My remarks to you today are geared toward AIDS
education in general, not specifically about IV drug use, but
educating young people about AIDS.

Currently, AIDS is a disease which is fatal and
increasing at an alarming rate. In Maryland, we have 756 cases
with 469 deaths. AIDS has generated a high level of concern in
almost every segment of society and is having a profound effect
on our social health care and educational) institutions.

Growing far more rapidly than the disease are fear and
misconceptions about AIDS. Surgeon General Koop said acquired
deficiency syndrome is an epidemic that has already killed
thousands of people, mostly young productive Americans. In
addition to illness, disability and death, AIDS has brought fear
to the hearts of most Americans, fear of disease and fear of the
unknown. : !

Fear can be useful when it helps| people avoid behavior

that puts them at risk for AIDS. On the other hand,
unreasonable fear can be as crippling as the disease itself.

295

 

 
 

 

At present our only defense against both the physical
disease AIDS and the psychological counterpart, fear, we believe
is education. This committee has the power to recommend that
young people of America receive factual age- appropriate
instruction about AIDS delivered by trusted adults in our
schools.

You have the power to recommend that school systems
cooperate with health departments and offer information about
AIDS to staff and parents.

You have the opportunity to increase the growing
number of states such as Maryland which, despite opposition of
pressure groups, have enacted regulations which require schools
to take leadership in combatting AIDS through education which can
influence young people to not engage in behavior which will put
them at risk for contracting the disease.

Your actions can result, in Short, in saving the lives
of young people in this country.

We in Baltimore City schools have particular concern
about AIDS education because we have a population that is at high
risk for HIV infection. Last year, Baltimore ranked second among
63 cities in the rate of gonorrhea infection and second in teen
pregnancies, with 5,328 recorded.

According to surveys, by their own admission nearly 10
percent of our students use IV drugs. There were 279 AIDS cases
and 175 AIDS deaths in the Baltimore area last year. ‘

Because of this, we mandated AIDS education in grades 6
through 12 during the last school year and, fortunately, have
been awarded a grant of $125,000 from the Centers for Disease
Control for the expansion of student and staff education about
AIDS.

In our 1986-87 school year effort, we reached
approximately 40,000 students using lessons and presentations
developed by the Baltimore City Schools, Baltimore City Health
Department, and the Maryland Department of Health and Mental
Hygiene.

Ninety percent of the teachers rated student response
to the lessons as very positive or good. A knowledge test
administered to a sample of middle school and high school
students shows that the average score was 87 percent correct.

Eighty-five percent indicated that they had learned
valuable things about AIDS.

296

 
 

 

%

' uw

'. . -+-Seventy-nine percent said that because of what I know
about AIDS, I intend to abstain from sex or engage only in safe
sex. . ; .

Eighty-one percent said because of what I know about
AIDS I intend to abstain from the use of IV drugs.

Eighty-five percent indicated that the AIDS epidemic
made them think more about personal sexual behaviors and drug-
taking behaviors, and an encouraging 72 percent have discussed
AIDS with their parents.

While this initiative was promising, there were a
significant number of students that we did not reach: special
education students in grades 6 through 12, students who were not
in science and health classes. Of course, those teachers who had
not received training could not share that with their students
either.

No formal. program of AIDs education was instituted at
the elementary level last year, but this year through our grant
we will be able to pilot AIDS education in grades 3, 4 and 5 in
40 schools.

Our grant from CDC will strengthen our AIDS education
program and insure its continuation at least for this school
year. It will provide impetus for age-appropriate lessons
linking AIDS with communicable diseases at the elementary level
and stressing the avoidance of drugs, abstinence and responsible
sexual behavior at the secondary level. It will help us build on
a solid foundation of support of parents, PTAs, civic, church and
community groups which have already given us a great deal of
help.

Yet, the funding we are receiving from the Centers for
Disease Control is not enough to do an adequate job of educating
students in school. We need additional monies for staff to
design curriculum, train teachers and monitor instruction. We
must be able to continuously update materials and provide ongoing
sessions for staff, parents and community groups.

We are particularly concerned about young people who
have dropped out of school and are at high risk of becoming
involved in drug use and other dangerous behaviors. In
cooperation with public and private health agencies and the.
media, we must reach these young people. This requires creative’
approaches and a cluster of services for such at-risk youth.

Both are dependent upon adequate funding.

Young people today are being bombarded with confusing
messages. Society and the media seem to condone irresponsible
sex and drug use; yet, children are advised to say no.

297

 

 
 

 

|
]

Some popular figures in all walks of life seem to tell
young people it’s okay to mess around. Youth are encouraged to
be popular, dress provocatively and have a good time, yet they
are rarely presented with the consequences of such behavior. We
sell everything from cosmetics to cars with sex, yet we prohibit
condom advertising on our television.

In some communities, educators are even restricted from
teaching about AIDS, sexuality and drug use. The Commission can
take some bold steps in recommending that these topics are
appropriate and necessary topics for discussion in the hone,
school and community. We also need balanced media coverage.

|
. Our schools reflect both the promise and perils of
society; consequently, instructional needs both in content and
strategy change over time. As educators, we have an obligation
to provide both information and offer strategies to assist
students in developing behaviors which will enable them to live
happy, healthy and productive lives. \
\ \

We instruct young chiildten to wash their hands, cover
sneezes and use their own eating utensils to\stop the
transmission of germs. We warn older children about interacting
with strangers, playing with fire and experimenting with drugs.
Unfortunately, we must now caution our preadolescents and teens
about yet another threat to their well being, the fatal disease
AIDS.

We routinely describe the dangers of early sexual
activity and drug use and now add yet another danger. We
regularly include discussion of sexually-transmitted diseases and
their prevention and must now include a disorder far more
devastating than the rest.

Instruction in our public schools about the immune
system, viruses, congenital disorders, genetics, opportunistic
and communicable diseases has taken on a new thrust through AIDS.

We must not allow our young people to be educated about
AIDS by chance, on the street or by unreliable sources. We must
enlist the support of parents in our efforts, and we must be able
to depend upon them to discuss this sensitive issue with their
children and to provide guidance for them in shaping their
behaviors.

We must have the full cooperation and sharing of
resources of community and governmental agencies.

Finally, we as educators and policymakers must speak
with one voice and uphold the right of all students to have
access to AIDS education. Thank you.

298 \

 

 
 

 

| DR. PRIMM: Thank you very much. I’m going to start
off the questioning by asking Ms. Jackson just how effective did
you think that your outreach program has been.

You state that 84 percent of the 970 coupons that you
issued were cashed in; in other words, people went into treatment
programs, and many of the people who did go into treatment
programs were 35 years or older, and the majority of them were
minorities who had not been in treatment for a number of years or
who had never been in treatment.

My concern now. is how many of those people stayed in
treatment, or have you followed them longitudinally? I think
that that’s really important to know; because you and I both know
that people are in and out of treatment very quickly and may use
treatment to reduce their narcotic intake so that they can get
high again. So I’d like you to comment on some of those issues.

MS. JACKSON: The coupons were good for the initial
three weeks of treatment. After that, people had to begin making
weekly payments of $20 to $40, depending on the progran.

All of the programs involved were already over capacity
and had to be prevailed upon to take patients who wished to stay.
Notwithstanding that, 28 percent of the people who utilized the
program remained in treatment after the three weeks and continued
to' make and began to make the weekly payments. So I think that’s
pretty substantial.

I would like to take this opportunity to express my
feelings with respect to the possibility of significantly
reducing the transmission of AIDS by efforts of risk reduction
education amongst active addicts, and I’m referring to the things
we have done, which is to advise addicts not to share needles,
how to sterilize sets, the kinds of things that have been done in
California and in other places. We initially began our
ex-addict outreach project telling our ex-addicts not to try to
advocate for treatment and not to try to bring people in because
that woulda tend to be offputting and alienating.

They came back to us and told us and continued to tell
us that it is totally unrealistic to expect that active
compulsive drug users will be able to consistently avoid needle
sharing enough to make a significant difference in the wave of
this epidemic. \

\

Our intake interviews ‘show that addicts are attempting
to reduce needle sharing and are attempting to sterilize their
sets but that they cannot do this consistently while they
continue to use. /

4

 

 
 

 

Also, none of this addresses the issue of sexual
transmission, which I think we tend to overlook, particularly for
women addicts that comprise 25 to 30 percent of all addicts who
utilize their sex as part of the drug economy and are, therefore,
in danger in two ways. Things like not sharing needles and using
bleach will not affect them, and they are the source of 50
percent of all of the women as patients and most of the pediatric
cases.

So I think we cannot overlook this heterosexual
transmission aspect as we go about doing our outreach. I think
that that’s something that takes a great deal more work and is
unlikely to be accomplished except in long-term treatment.

DR. PRIMM: As you know, my pet peeve has always been
if you hand out the bleach bottle, do you tell them to wash
their cooker with bleach? Do you tell them to wash their cotton
ball with bleach? Or do you give them clean cotton? I think
that’s very important, too.

MS. JACKSON: Something else on that. When I was in
Amsterdam in 1986 where I went after the Paris International, I
discovered that they have quite a different system of treatment.
They have many tiers of treatment. It’s easily accessible, and
they’ve been giving free needles there since 1976.

However, at that time in 1986 30 percent of their |
admissions who shot drugs were already seropositive despite that,
and I think that that tends to support the idea that if people
are going to use drugs, a large proportion of them are going to
continue to share needles to a certain extent, regardless of
whether free needles are available to them or not.

It’s not to say that we should not be making street
efforts, because anything that affects anyone is of some value,
but I don’t think that that’s going to be sufficient.

DR. PRIMM: But you didn’t answer my question. What
do you do about the narcotic paraphernalia that is also used,
that is also a source of the virus?

MS. JACKSON: I think that’s not addressed at all by
telling people not to share their sets. It’s Simply part of the
culture of drug. usage. I have never seen it otherwise in all the
years that I’ve been out there, and I’m sure you haven’t, either.

DR. PRIMM: But my point is --

MS. JACKSON: You’re going to give them free
paraphernalia --

300

 

 
 

DR. PRIMM: If you’re going to do what you’re doing,
then certainly we have to do something about that part of it.
That’s just as deleterious as the needle and the syringe. You
are giving them syringes, too, I would imagine.

MS. JACKSON: We are not giving them anything.
DR. PRIMM: No syringes at all?

MS. JACKSON: No. We are advising them not to share,
but our ex-addicts have more or less taken it upon themselves to
use their positions as bridges between the addict community and
the public health community by getting patients into treatment.

DR. PRIMM: Because I think there needs to be some
consensus about paraphernalia, what we should do, and there
seems not to be any consensus from any one of the panels that
have talked about needle exchange programs nor from panelists who
talk about giving out bleach.

For you, Dr. Feldman, I wanted to talk just briefly
about the policy of not passing judgment on drug-using activity
when you give out the bleach. In other words, I think silence in
that instance could be interpreted as endorsement or consent that
you can go on and use drugs and we’ll just hand you the bleach
and tell you how to use the bleach.

Also in San Francisco, there’s been some cases recorded
where people have injected bleach. What was the result of the
injection of the bleach in relationship to it causing a very
noxious stimulus to the body?

DR. FELDMAN: With regard to the question of silence in
passing out bleach bottles, up until recently we now have ten
outreach workers for the total city of San Francisco. We had
seven before, and that was cut back to six because of a shortage
of funds. Ours has been a pilot project rather than a
saturation method.

In most cases, we just have not had the opportunity to
have the kind of dialogue that would take place between addicts
and our CHOWs in the kind of consistent manner that I think you
would find desirable and it would be desirable.

We’ve made attempts to have community rap groups where
you pulled together participants, but for anybody who goes out
with one of the outreach workers when they’re about to engage IV
drug users on the street and carry with them a package of 60 to
100 bleach bottles, I think they’re always rather astonished
with how IV drug users descend on then.

301

 

 
 

 

There really isn’t the opportunity, given the ratio of
outreach worker to IV drug users, to have the kind of dialogue
that’s necessary.

We try to get that message across in a variety of ways,
but I think we’ve passed out probably some 60,000 to 100,000
bottles of bleach to populations in San Francisco, many of whom
come from other jurisdictions where outreach programs do not
exist.

DR. PRIMM: I abhor smoking, and I have good reason to
abhor smoking, and I wear a "no smoking" badge on my lapel.
Perhaps I could suggest to those people who are passing out
bleach that they ought to wear a "no needle", "no syringe" button
in their lapel because we’ve got to give them the message that
they’ve got to stop using drugs. I think that’s the most
important message that we can give to then.

I just feel that if we’re going to be there and that
close to them on the street or in the shooting galleries, that we
can give that kind of message.

Yolando Serrano was here yesterday, and she testified,
and I talked to her about the same thing. I’m not against giving
out bleach, but let’s give out the right messages if we’re going
to give out bleach. I think that’s important because I don’t
think this Commission could ever make a recommendation to the
President about giving out bleach without first talking about
don’t use drugs. Dr. Wiebel --

DR. FELDMAN: If I may, Dr. Primm, just in response,
our program has inadvertently become a bleach distribution
program. We like to think of it as a community outreach program
which is the delivery of human services, of which this became an
educational tactic.

DR. PRIMM: Just a part of it. Okay.

Dr. Wiebel, in Chicago there has been a disarray of the
effort that has been reported in the Chicago papers, and there
has been a change in leadership in the AIDs education office.

Apparently they have hired a new physician who works in
that office, and Tim Moffitt, who runs another drug program in
the community, has received a considerable amount of money for
ongoing drug education.

Can you talk to us a little bit about that effort in
Chicago which had not had a concentrated good educational effort
but yet had a high incidence and prevalence of seropositivity
among the addicts and their gay population? /

302

 

 
 

 

DR. WIEBEL: I’m hesitant to enter anything into
testimony when I only have limited knowledge. \

, I worked very closely with the AIDS Activity Office for
the city for a while, but as I’ve gotten the NIDA money I’ve been
pulling back from that just at the time the changes you’ve
referred to have happened. I’m not totally familiar with the
situation you were referring to in relation to the treatment
program.

DR. PRIMM: I would think that your program should
certainly cooperate very much with Dr. Arthur Brewer and the city
progran.

DR. WIEBEL: By all means. We were originally part of
the CAPEP Project. That’s being phased out now.

On this NIDA grant, we’ve really got a subcontract
through the Illinois Alcoholism and Drug Dependence Association.
The co-principal investigator, Dr. Edward Jenay, is overseeing
the interagency portions of the grant. As the other co-PI, I’m
overseeing the street outreach portion.

So it’s not that I’m totally out of touch, Dr. Jenay
certainly is very much in touch with the community activities and
interagency activities. I’m a little bit more grounded on
strolling down 47th Street uptown and the street- based
activities, pool rooms and shooting galleries.

DR. PRIMM: Thank you. Dr. Walsh.

DR. WALSH: I was particularly gratified by Ms..
Bowden’s efforts at reaching the next generation, the adolescents
and to some extent the pre-adolescents. It was interesting to
me that in one of the surveys you mentioned, a significant
percentage of people told you that they would not use drugs
because of their fear of AIDS, the youngsters, which gets me into
the question of part of this education business which has been
bothering us for the last couple of sessions.

We see on the television, for example, all the time
very effective messages, "Drugs Kill." They are pretty effective
things at least to me but I don’t use drugs. It is impressive to
me that this apparently doesn’t impact these youngsters but when
you tell them, "AIDS kills," they are getting affected which may
have some bearing on the type of pressure that is being put on
the media and the type of ads they may eventually use, the type
of mass education programs that may go out. Would you like to
comment on that?

Pe
MS. BOWDEN: I think the AIDS messa is a new message
sometimes because it is new, because it is a very

4

me

303 ST

 

 
 

 

sensationalized thing, kids may be paying more attention to that
than to some of the, "Yeah, I have heard it before" messages
about drug abuse or’ "Yeah, I have heard it before" about early
sex.

The idea that you can die from this, okay, and we are
seeing this very graphically portrayed. Early drug education had
a lot of that, ten to 15 years ago, about addicts dying and that
kind of thing and that a some impact.

- Our approaches differ now a little bit. We not only
want to point out what the problems are in terms of the physical
problems but what your whole life problems can be. With AIDS, I
think the kids see that this isn’t something that you are going
to get over or grow out of. You get it, you are probably going
to die and that makes a very large impact.

The other part of it with young people is that in some
cases they have unwarranted fear about it and they have all kinds
of misconceptions and we are just as concerned about the kids who
aren’t engaging in at-risk behaviors but are really uptight and
very upset because they are thinking that they are going to be at
risk when they really aren’t.

We are very concerned about them. They comprise the
majority of the population. We are also concerned with those
kids who might be engaging in at-risk behaviors and we want to
stop them. There are some studies going on now about how media
messages are effecting young people and a lot of new campaigns,
rap songs, videos, are hoping that because kids seem to listen to
those messages, those negative messages, maybe we can put some
positive messages in rap songs and in posters and in the kinds of
things that are appealing.

Again, they haven’t been around long enough for us to
know and for our young people to say, "They intend, " intend is
one thing; not do is another.

DR. WALSH:. Those media messages have not been
effective in Australia and they are not terribly effective in
England so far. I wondered, one other question are you bringing
the parents into your education program at the high school level
at all?

MS. BOWDEN: Unlike some areas of the country, we have
had incredible parental support. We have had no negative
reaction at all. We have had parents say, "Tell them more, tell
them earlier." Our original proposal had us dealing with some of
these issues from kindergarten on. The new Maryland guideline in
terms of mandated education starts at grade three. We will
comply with that.

304

 

 
 

The parents are very, very interested and they want to
know how is it that I approach these sensitive topics with my
kids. They.seem more interested in asking now. -.We have been
trying to work with parents for a long time to have them address
issues of sexuality and drug use with their children. Now they
just see this is really important and I need more strategies. So
.we are doing a lot of parent education and we are going to
continue to do that.

DR. WALSH: You are getting good feedback from the high
risk group parents,. the so-called, single parent and that sort of
thing?

MS. BOWDEN: We have a large number of single parents.
We are an 80 percent Black, 19 percent White, one percent other
population in our schools so we are dealing with a cluster of
problems that our families have and this is yet another one.

DR. WALSH: You have a dual education program there
because some of the parents probably can use it as well.

MS. BOWDEN: That is the other problem we have at the
elementary level because we have a lot of children who are coming
from drug using homes and therefore, that presents another whole
problem, a needle laying around that may be touched.

DR. WALSH: Are you able to use the kids as a bridge to
Freaen those parents and educate them?

. MS. BOWDEN: I would say that we would hope to be able
to. I don’t have any data to substantiate that but our messages
to the kids are very, very clear. They are not mixed messages.

DR. WALSH: Very good.

DR. PRIMM: Ms. Bowden, there have been some
seroprevalence studies done in Baltimore on the addicted
population by Dr. Lang at the Addiction Research Center at
Francis Scott Key Medical Center and at Hopkins, they have also
done some seroprevalence studies. I know those two agencies
haven’t communicated and I know your thrust is in the educational
system. Is there any way that you can see a cooperation between
what you are doing, your thrust in education; and what they are
doing at Hopkins? Certainly as a member of the advisory board
of the National Institute on Drug Abuse, I am going to ask that
the Addiction Research Center cooperates and shares with you
information and data that can be delivered to the people that you
are targeting. >

MS. BOWDEN: We need to do much more of that.

305

 

 

 
DR. PRIMM: That is not happening in Baltimore and I
personally know that. I have a daughter who is a psychiatrist in
Baltimore that tells me that that is not happening, that lives in
the Black community, in a very poor section and chose to do that
so that she could come in contact with the people and runs a
community health center there and a community psychiatry program
at Johns Hopkins, the Co-Star Program.

I can see those programs as being deeply involved in
what you are doing to help you do a better job in educating the
school children, particularly the special education children that
were not touched at all in your past thrust.

MS. BOWDEN: And they are more at risk for a lot of
reasons.

DR. PRIMM: And they are the highest at risk persons, I
think, in the school system.

MS. BOWDEN: We have some people from Hopkins on our
advisory board. We hope to increase that relationship.
Interestingly, one of my former students is working in psychiatry
in the AIDS section at Hopkins and we get a lot of valuable
information and we also get a lot of valuable strategies from
those folks and we would like to increase it.

Our problem, quite frankly, now is that my office has
responsibility for science and health education, all of it, not
only AIDS and drugs, but we have a person power problem. So we
are going to be able to hire a facilitator to deal exclusively
with AIDS -education and we are going to be able to hire through
the Drug Free Schools grant, a facilitator to deal directly with
drugs.

So that is going to give us more people who can
actually go and meet with these experts in the clinical setting
and learn more and be able to translate that into usable portions
for education. We have a very good relationship with the private
medical community and the public health community in Baltimore
and I am really pleased about that. So thank you for that
suggestion.

DR. PRIMM: If you need my help, please call on me
personally to try to move some of those things for you.

MS. BOWDEN: Thank you.

DR. PRIMM: Dr. Lilly.

DR. LILLY: I want to make just a brief comment. I am
delighted to hear that the community-based activities are going

on. From my experience with the: Gay Men’s Health Crisis in the

306

 

 
 

 

period of time when I was associated with them, we found that we
were indeed quite good at getting our message to a large portion
of the gay population though by no means all of it.

There was part of it that we couldn’t get to. We found
that we had a fair amount of requests for social services and
education from the IV drug using community as well and yet when
we tried to do that, we were quite unsuccessful simply because we
did not speak the language.

So it has been clear to me for a long time now that if
we are going to do education that works, you have to speak the
language of the person that you are addressing and you have to
have their confidence and so I am delighted to see that you are
doing this work and that it is beginning to pay off.

DR. PRIMM: Dr. Lee.

DR. LEE: Ms. Bowden, I am sorry you are the last
person of two days because I think what you are doing is really
one of the important things as far as this problem goes. Every
person that you prevent from going onto drug addiction is saving
the rest of these people an enormous amount of time, energy and
money.

Let me wrestle with some of the statistics that we have
heard. By the way, yesterday, Dr. Tuckson told us that there are
more people in some neighborhoods in the District of Columbia
that go to prison than go to college and if you can change that
ratio, we are talking turkey.

Now here are some of the numbers. We have one out of
ten Americans who are drug abusers. We are told a quarter of
these are disabled. We are treating five percent of the disabled
and one percent of the total drug abusers. We are working flat
out, long waiting lists, a lot of difficulty.

I am wondering whether focusing on the medical aspects
here is wrong and in my own mind, I am beginning to think of this
drug problem as the symptom rather than the disease and in my
talking to everybody, I have begun to think that the solutions
are political and social and not medical.

The medical people are doing a great job with the
problems they have but Holy mackerel, they are not touching the
tiniest percentage of this problem. I have the feeling that the
underlying solution here is opportunity and jobs in this country.
Does this panel agree with that and as an addendum, why is there
so much drug addiction in Holland?

MS. BOWDEN: I will just make a comment about your
general statements. Our health education gives as much time or

307

 

 
 

more to trying to develop good self concepts, goal setting,
finding the opportunities, seizing the opportunities, setting
your sights on something for the future. This is especially true
in our health education grades five through eight. That is the
time when young people are beginning to get a vision of
themselves.

If a young person has a vision and a goal, he or she is
much less likely to engage in all kinds of at-risk behaviors.
Therefore, we are not only approaching it from a medical
standpoint, we are trying to approach it from a holistic
standpoint. I agree with you that a great deal of the despair
and the difficulties we see in our community manifests itself in
drug use, irresponsible sexual activity and a number of other
things and sometimes the role models that our children have, that
is the kind of situation in which they grow up.

It is a very difficult cycle to break but you can only
break it if the child has the vision that he or she can succeed
and then the opportunity to do it. That is what we try to do in
schools but as long as we underfund education, we have trouble ,
doing that. So I agree wholeheartedly with what you said on
that.

DR. PRIMM: I would like to just commend both Ms.
Jackson and Dr. Feldman for the projects that you are doing
because we could not expand treatment and we there could not not
get a number of the addicts who are in the shooting galleries
into treatment programs or into anything meaningful and one thing
about giving out the bleach is doing something, it is making
contact with them.

I really don’t want you to take my remarks as being
critical as much as you take what my suggestions are and maybe go
on and try to change what you are doing to make it even better
because I think it is just half or three-quarters of the job that
you have to do to really stop the transmission of the virus
through sharing of implements and I think that is really
important.

The other thing, Ms. Jackson, is what you are doing is
the first demonstrable project in this country that gives us an
idea of the impact that giving out bleach or giving out coupons
would have.

Everybody talks to me about Holland which is a
different culture, a different place altogether, permissive
attitudes have existed in Holland for years, people go smoke pot
on the street, buy it openly, nothing is done about it.
Prostitution is rampant as you well know.

308

 

 
 

I have seen the alleys of Amsterdam for a number of
years, I went to medical school in Europe, so I am very well
aware of what happens there. We can’t extrapolate from Holland.

DR. LEE: Thank you, Dr. Primn.

DR. PRIMM: You knew that, right?

DR. WALSH: We will make note of that.
{Laughter. ] /

DR. PRIMM: We can’t extrapolate from Holland here to
the United States. They are two different cultures and I am glad
you pointed that out to the Commission today. What they do there
is quite different and people continue to share needles despite
the fact that they are given clean instruments with which to take
their drugs. Mr. Bixler, you had something.

MR. BIXLER: I have a concern as we are talking about
AIDS prevention, whether we are talking with the adolescent
population or with IV drug users and that is that we not repeat
some of the mistakes that we have made in substance abuse
prevention in the past.

The concern that I have is that we have to establish
the link between having information about the negative effects of
substance abuse or the terrible things that can happen if one
comes down with HIV infection and changing behavior.

I am very concerned that we will focus our efforts
particularly with adolescents on giving them the message of fear
which will help some to change their behavior, will keep others
from doing that initial exploration but there are large numbers
for whom that message of fear will not be sufficient to have them
change their behavior and we need to help them develop
strategies and skills that will enable them to protect
themselves.

The example of a bleach bottle although just a
beginning step helps begin a dialogue that allows a discussion
for other ways in which IV drug users can protect themselves and
obviously the goal would be for them to stop injecting drugs and
to stop drug abuse.

But it gives them at least a beginning step that they
can take which is a step to empowerment and I think we need to
also work with adolescents on what are those beginning steps that
they can take. Just saying no is not the last word but the
beginning word of a dialogue and we need to follow it up with
those adolescents for whom "Just Say No" is not sufficient.

So
a 309

 

 
 

 

DR. FELDMAN: If I may, Dr. Primm, there are two >
questions that were kind of left hanging that I would like to
come back and tie down if I may. One had to do with your
question about injecting bleach.

I guess that is connected to really the toxicity of
bleach and the questions that arise from that. That single
feature is probably one of the reasons many jurisdictions opt out
on a bleach protocol because they are afraid of some of the legal
issues associated with it.

We have had a good deal of experience now in the bleach
program and we have had people who have injected bleach. Most of
the self-reported cases of injecting bleach usually through
accident is that there is very little difficulty associated with
it other than some irritation at the injection site. We have had
cases and incidentally there is a paper on that which I will send
to you that Dr. George Rutherford of the Department of Public
Health in San Francisco and Jeffrey Froner of our staff put
together in which we pursued some cases of people who ingested
bleach. One young man attempted suicide by taking bleach.

DR. PRIMM: Intravenously?

DR. FELDMAN: No. He drank a sizeable quantity of it
along with valium. I guess it was the valium that caused him to
regurgitate.

DR. PRIMM: That was a nice cocktail.
[Laughter. ]

DR. FELDMAN: I guess the only feature that was
reported of any negative quality was that the place smelled like
a laundromat. It is listed, I think, according to Dr. Rutherford
in terms of its level of toxicity along with lipstick, toothpaste
and babies teething rings. So I think that is important evidence
for those jurisdictions who are interested in the bleach program
but concerned about the possibility of law suits that may emanate
from that.

DR. PRIMM: I just want to remind you that bleach has a
skull and cross-bones on it. I don’t know if you have ever seen
that but even on the no-frills product that you can buy, it has
the skull and cross-bones. It says, "poisonous if ingested." I
wondered what happened. I wonder why?

DR. FELDMAN: Now there is a case of a woman who was on
a dialysis machine in which they poured in a couple of quarts of
bleach while in motion and while she did suffer cardiac arrest --

DR. LEE: Why was that done?

310

 

 
 

 

DR.’ FELDMAN: _ Pardon?
DR. LEE: How dia it happen?

DR. FELDMAN: This was done in a hospital in which they
inadvertently began to clean the machine before they detached her
but she survived the episode.

DR. LEE: I hope there are no lawyers in this room.
{Laughter. ]

DR. FELDMAN: I won’t mention the hospital! I wanted
to, pick up on an observation that Dr. Lee made and that had to do
with how come so many young people really are using drugs despite
a prohibitionist policy of some 60 years, there seems to be an
increased level of drug use.

I would put it in the same political and social context
that you, yourself, have; that when, young people grow up ina
community in which there is very limited opportunity and now even
more reduced ways of getting into the legitimate work world, the
opportunities for selling drugs, particularly cocaine these days
far exceed anything that is available to them and certainly the
minimum wage that they can earn at McDonalds is not equal to the
amount of money they can.make selling illicit drugs.

These become then not simply the flashy role models
because they are not necessarily flashy role models and the
amount of money that they make is not really that extensive but
it does make their income a lot better than anybody else around
and what we found out in our ethnography is the role models go
really in kind of street generations. It is the 13-year old who
looks up to the 15-year old who looks up to the 17-year old who
looks up to the young adult and that may, in fact, be the money
maker. - . .

I think .it was Malcolm X who said that the most
dangerous man in the ghetto is the slickster who makes money
because he becomes the role model and that, I think, is
essentially what exists now and so that you have not necessarily
a proselytizing to use drugs but simply by its being there and
the evidence of its success, it becomes a pleasurable and favored
form of behavior.

DR. PRIMM: I want to thank the panel and begin with
Ms. Bowden, and thank you for your testimony today. Mr. Bixler,
Dr. Wiebel, Dr. Feldman and Ms. Jackson, and then turn the
meeting over to Admiral Watkins.

311

 

 
 

 

CHAIRMAN WATKINS: Before I make a closing statement, I
would like to say to you, Ms. Bowden, that you are in my opinion
fortunate to be in a state who has the vision to put a solid plan
together, a state plan. You have a chief state school officer
that understands the vital importance of human biology in the
schools, he is in an adolescent development effort right now with
some of the best minds in the country trying to put together a
human biology continuum, focusing on middle school, which will
give us a basis of understanding of some of the complexities of
our own bodies, and maybe by learning that, we might respect
others a bit more. There is a basic long term education program.

While we must deal with the remedial efforts, there is
no question about it, at some point in this nation we have to
come to grips with the longer term understanding of the human
body. That can start very early, certainly pre-school, all the
way to the baccalaureate level, and packaged up in the way that
Dr. David Hornbeck is doing and that other good people in the —
nation are working on very hard right now. ,

I commend your state for moving aggressively in this :
area because we are going to need that kind of a role model that
understands the longer term aspects of what you have been
addressing here today.

When we opened these hearings yesterday, we noted that.
IV drug abuse and the HIV epidemic was one of the issues that
demanded the Commission’s immediate attention. These two days of
hearings have only served to reinforce the immediacy of this
problem. We have heard impressive testimony from a respected
group of witnesses who have provided us with compelling
information on the issues surrounding IV drug abuse in the
context of the AIDS epidemic.

Key issues have been identified and recommendations
have been made in many areas. We would like to follow up with «=~
more specific questions and requests to many of the panelists,
and therefore, we will hold the record of these proceedings open
to accommodate the additional questions and answers from each of
you. Please take advantage of that. If things come to mind and
you would like to let us know, don’t forget the hearings are
still open for those who have come before us. You have an open
door to us and we would like you to take advantage of that. We
can use all the advice you can provide to us, those things that .
you think are constructive and follow on to this, please let us
know.

We thank the panelists for their willingness to
continue this kind of a dialogue for the remainder of our tern,
which goes through the 24th of June. Our witnesses in the past
two days have made the fact emphatically that drug treatment is
an effective strategy for stopping IV drug abuse and altering the

312

 

 
 

spread of HIV infection. Yet despite this compelling testimony,
we were also made painfully aware that this life saving treatment
is unavailable in too many parts of our nation.

Waiting lists prevail in most of our cities and
treatment capacity is estimated at only 10 to 20 percent of need.

The Commission has asked for further documentation on
this issue for preparation of its recommendations, as I mentioned
earlier, we plan to make early ones at least in part in February.
As a result of these hearings, we are now a more enlightened
Commission and we certainly are not a complacent one. While we
are now able to approach the problem of IV drug abuse and AIDS
with a clearer understanding of the issues, our task does not end
with the closing of these hearings.

Our true work in this area begins now in analyzing the
facts, views and recommendations presented here and in the follow
up effort I just mentioned for each of these two days, so that we
can then develop our own recommendations based on this
information and pass it on to the President.

We have committed ourselves to seeking solutions to the
lack of treatment facilities, the disproportionate impact on
minorities, pressing needs for foster care and other problems
attendant to IV drug abuse and AIDS, and we will carry out that
task to the best of our ability.

We will also continue to move forward to find answers
to the problems presented by AIDS in areas outside of IV drug
abuse. Next month, for example, we will hold hearings on the
Many issues related to care.

I thank you all for your commitment to our quest. I
particularly want to thank Dr. Primm for these excellent hearings
that he has set up and for the outstanding presentations we heard
from all the witnesses over the past two days.

Your work, Dr. Primm, has been tireless and has been
greatly appreciated by all your fellow Commissioners.

With that, I would like to wish all my colleagues on
the Commission and all of you as witnesses and those remaining in
the room today, to have a wonderful Christmas season and a
prosperous New Year, and we will adjourn until the 13th of
January.

[Whereupon, at 5:20 p.m., the hearing was adjourned. ]

313

 

 
 

APPENDIX

 

 
 

 

 

December 14, 1987 DRAFT

Dr. Schuster's Remarks to the President's AIDS Commission.

I would like to thank you on behalf of drug abuse workers throughout the
Nation for devoting these two days to the relationship of intravenous drug
abuse and AIDS. Many drug abuse professionals have expressed their fear to me
that, with respect to AIDS among IV drug abusers, the Nation will choose a
policy of benign neglect and let the epidemic take its terrible toll. The
fact that you have brought us here today should allay much of that fear.

We are all wrestling with the many policy issues and practical concerns
that this epidemic raises. In addition to funding a variety of projects aimed
at reducing the spread of AIDS among drug abusers, the National Institute on
Drug Abuse (NIDA) has been conducting a number of meetings at which national
and international experts in research, medicine, law, ethics, and other
relevant areas come together to grapple with the hard questions. Recent
meetings have dealt with methods for educating IV drug abusers about the
dangers of AIDS and with some of the more controversial approaches to AIDS
control--the questions of mandatory treatment for drug abuse and the
distribution of needles. NIDA-supported meetings have looked at the need for
expansion of treatment capacity and the cost of providing this treatment.
Together with our discussions over the next two days, it is clear that the
Federal Government is accepting its responsibility to examine every aspect of

this problem.

 

 
 

 

We have always known that the intravenous use of illicit drugs can be
deadly, but AIDS has added a new dimension. With AIDS it is no longer the
drug abuser alone who faces death as a result of taking drugs. One person's
drug use and consequent infection can lead to the death of other people,
including people who are close to us. The unnecessary death of any person is
always a tragedy, even when the victim is someone who lives at the fringes of
Our society. Its impact is especially noted when the victim is someone in the

mainstream, very much like those of us here today.

NIDA estimates that there are about 1.3 million intravenous drug abuserg
in this country. Fewer than 140,000 of them are believed to be in treatment.
Most IV drug users inject heroin, but coming up fast behind them is a large
population of people who inject cocaine. In some parts of the country, a
substantial percentage of IV drug users is already infected with the AIDS
virus. Without treatment for their drug abuse, the rest remain-at extremely

high risk for infection.

IV drug abusers can spread the AIDS virus among themselves and to the
non-using population. Among themselves, the method of transmission ts mainly
through the sharing of contaminated needles. Infection from addicts to
non-users occurs through sexual activity. In many of these cases, the sexual
partner is not aware that he or she is involved with someone who has used
drugs intravenously. This sets up a potential chain of contagion through

which the general public can become infected.

 

 
 

 

 

Many take comfort in the belief that IV drug users, are a fairly isolated
group and, therefore, so is their disease. To a certain extent this'is true.
Because they are engaged in illegal behaviors, they certainly don't want to
draw the attention of the authorities. In addition, they are isolated by
poverty, some of which is attributable to the cost of their drugs, but some to
a lack of skills or training. Most IV heroin users are Black or Hispanic so
the remaining vestiges of racial prejudice tend to keep them apart from the
majority population. Also, as is true of any social group, IV drug abusers
are likely to confine most of their affiliations to people who share their
interests, in this case drugs. ?

Unfortunately, there is very little reason for complacency--the' isolation
is nowhere near complete. IV drug users are members of families and
communities. In fact, most male IV drug users have non-using sexual partners
who are vulnerable to receiving and passing on the infection. Both male and
female IV drug users may engage in prostitution to support their habits. No
one would argue that all their customers are IV drug users, too. Casual or
constant, the sexual partners of IV drug users who are infected with the AIDS

virus are at risk for infection.

So are their children. Two thirds of the pediatric AIDS cases involve
perinatal infection from a drug abusing parent or partner. These babies enter
a world in which their parents may be dead or dying, they themselves are

likely to suffer chronic illness and early death, and few foster homes are

 

 
 

 

open to them. For the sake of these innocent children alone, if for no other
reason, we must ensure that everything within our power is done to control the

epidemic.

One hopeful note is our knowledge that many IV drug users want help. This
is evidenced by the fact that there are long waiting lists for treatment
programs in many parts of the country. In addition, NIDA's drug abuse
information and referral telephone hotline has, since it began in April of
1986, received calls from about 9,000 IV drug abusers. They are referred to
drug abuse treatment programs across the country. As more treatment slots >
become available, we see that more and more drug abusers identify themselves
and ask for help. Recently, AIDS information and referral services have been
added to the hotline, and we expect the number of IV drug-using callers to

increase as this is publicized.

Of course, not all IV drug users are asking for our help. Some drug users
are not able to quit using at this time. However, they may be able to stop
injecting, or stop sharing: needles, or start using Sterile paraphernalia and
safer sexual techniques. We need to examine closely the reasons why they
engage in certain behaviors. For example, needles are not always shared
because clean "works" are hard to obtain. There is also a social ritual that
encourages needle sharing, and this is most notable in the "shooting
galleries" found in some large urban areas. There, many individuals may share

injection equipment, and the risk of HIV infection rises with each use.

 

 

 
 

Because of our research, we understand this situation, and can deal with
it realistically. We can educate IV drug abusers as to the behaviors that put
them at risk for AIDS. We can teach them about risk reduction techniques,
such as the use of bleach for sterilization. We can facilitate positive
changes in a number of ways, always leaving open the offer of help when the

user is ready for treatment.

In order to draw in this most difficult-to-reach population, drug abuse
workers throughout the country have developed very effective, culturally
sensitive outreach programs. Many programs, public as well as private, are?
using creative techniques in approaching IV drug users. Recently, NIDA began
awarding grants to major cities across the country to initiate street outreach
programs modeled after those first developed in San Francisco, Newark, and New
York. Indigenous people go out on the streets to talk with drug users,
prostitutes, and their sexual partners. Nurses make contact with them in
hospital emergency rooms and detoxification units. Staff members at shelters
for the homeless and for adolescent runaways provide information to their
charges. Teams reach out to the sexual partners of IV drug users in homes,
store, churches, clinics, and social service agencies. Criminal justice
agencies, probation, and parole workers, too, deliver the same strong messages
about prevention and risk reduction, so that addicts will be aware of how to

avoid infection and transmission.

 

 
 

 

In the context of outreach, Tet me mention that NIDA has provided AIDS
training for well over 3000 people who work in the field of drug abuse, and
this program continues. Initially, we trained counselors and clinic
administrators. Now we are concentrating on training trainers, who can then

transfer the knowledge to others in their communities.

NIDA is also using media messages as tools for prevention and education.
You will see a tape of some of them in a few minutes. We are aggressively
following strategies that Will teach people to avoid high-risk behaviors. Our
primary goal is to convince people to avoid drug abuse in the first place ow,

barring that, to stop using.

There is much work to be done. Since treatment is generally needed by
people who wish to stop using drugs intravenously, it will be necessary to
expand treatment capacity. This will require effort by all levels of
government and the private sector. Communities must be persuaded to allow
treatment facilities in their neighborhoods. The appropriate. mix of treatment
modalities for each community must be identified. Programs must be

developed. Staff must be recruited and trained.

It is a major undertaking, but the cost of treating a drug user is likely
to be minimal compared with the cost of treating an AIDS victim. Let me state
my unequivocal belief that drug abuse treatment does work to prevent the

spread of the AIDS virus. Our research has clearly shown that people in

 
 

 

treatment inject drugs far less frequently than those who are not in
treatment. Thus, they have fewer opportunities to become infected. More
specifically, recent studies show a lower HIV seroprevalence rate among drug
users in treatment than among those left untreated. We expect these results

to hold in future studies.

What else do we need to do? Well, we must certainly continue our research
efforts. Drug abuse is a chronic, relapsing disorder. With the present state
of our knowledge about effective treatment, most addicts will require, at a
minimum, repeated episodes of treatment. For some, ongoing treatment, which
may include extended maintenance on methadone, is going to be necessary.
Clearly, continued research may lead to more effective treatments. For now,

we must use what we have in the most efficient way possible.

In addition, we must continuously review the approaches others are taking
to the AIDS epidemic among IV drug abusers. We need to build and maintain
networks of all kinds. Although every community is different, we can learn
from one another. It is possible that a pamphlet from New York would be
useful in California, or a technique used in England may be of value in the
United States. No single program, agency, or individual, is going to conquer

this epidemic but, if we all work together, we still have a fighting chance.

That last point is particularly relevant to areas where the AIDS virus
hasn't spread rapidly as yet. It's all too easy to think that it can't happen

in one's own back yard. Unfortunately, geography doesn't impress a virus.

 

 
 

 

Every State-in the Union has at least one case of AIDS that is attributable to
IV drug abuse. Communities that are lucky enough to have low seroprevalence
rates right now should be engaging in prevention and education Campaigns to

keep those rates down.:

This seems like a good time to turn the floor over to my colleague, Dr.
Harry Haverkos. He will give you some statistics about the AIDS virus as
background for the discussion I expect will follow. After his talk, we will
present some media messages develped by NIDA. Then we will be ready for your

questions.
(Harry: 15 minutes)

(Media presentation: 5 minutes.)

 

 
 

C Mr.: Chairman and members .of the Commission, I am Dr. Harry Haverkos, Chief
of the Clinical Medicine Branch, Division of Clinical Research, National
Institute on Drug Abuse.

I will describe the nature and extent of the problem in three parts:
First will be a review of the results of the national surveillance of AIUS
cases; second is a discussion of the results of HIV seroprevalence studies
among IV drug abusers; and third is a discussion of estimates of the number of
IV drug abusers in the U.S. and the number currently in drug treatment.

AIDS Surveillance

Concomitant with the initial cases reports of AIDS among homosexual men
was a report of Pneumocystis carinii pneumonia among men who denied
homosexuality but admitted intravenous drug abuse. Initially skeptics assumed
that those cases were individuals who prostituted themselves to other men tp
pay for their drugs. However, as the case reports among intravenous drug
abusers (IVDAs) continued, and as female IVDAs were reported, it became clear
that IV drug abusers were also at risk for AIvS.

Between June 198] and December 7, 1987, 483,139 cases of AIDS were reported
to the Centers for Disease Control. At least 27,235 (57 percent } have died.
Nationwide, intravenous drug abusers (IVDAs) constitute 25 percent of patients
with AIDS (11,643). Heterosexual IVDAs scour for 17 percent of AlUS cases

(8,058). Homosexual or bisexual men who also pert IVJA account for an
additional 8 percent of cases (3,585). *
\

\ AIDS among IVOAs is more of a problem amongj heteroseauals on the East

coast than in the West. In fact, three-quarters of all heterosexual cases

 

 
 

 

among IWWAs in the United States are from New York or New Jersey. To
emphasize the geographical distribution of cases among IVDAs are the
following: In New Jersey, heterosexual IVDA account for 45 percent of all
cases in that state. In California, heterosexual IVDAs account for only 2
percent of all cases.

However, AIDS among IVDAs is not limited to a few states. All 50 states,
Puerto Rico, and the District of Columbia have reported at least one AIDS case
among heterosexual IVJAs. This indicates that HIV infection has spread
rapidly through IWaAs in the U.S.

The racial distribution of heterosexual IVDAs with AIDS is also
remarkable. Although Blacks constitute 12 percent of the U.S. population,
they constitute 5] percent of heterosexual IVDAs with AIDS. Similiarly,
Hispanics make up 6 percent of the U.S. population but account for 30 percept
of the heterosexual IVDA AIDS cases. Minority populations in New York and New
Jersey have been hit especially hard by the epidemic among IVDAs.

The morbidity and mortality of AIDS is not limited to the IVDAs, but is
shared with sexual partners and children of infected IVJAs. Approximately 65
percent of the U.S.-born AIDS cases attributed to heterosexual contact (1,076
patients) report having sex witn an IVOA. Approximately 70 percent of the 533
pediatric patients attributed to perinatal transmission (spread from mother to
child during pregnancy or childbirth) occur in infants born to intravenous
drug abusing women or women who are the sexual partners of IVDAs. Blacks and
Hispanics are overrepresented among these groups, heterosexuals and children
with AIOS.

The rate of new cases of AIDS in the U.S. is increasing rapidly. A year

 
 

ago, CDC reported 28,000 cases. Therefore, approximately 20,000 new cases
were diagnosed and reported in the last year. That represents 55 new cases
diagnosed and reported each day over the last year in the U.S. Of these, 14
new cases were found among IVDAs. Every day saw 2 new heterosexual cases,
every 2 days brought a new pediatric case. Unfortunately, we expect these
numbers to double again in the next 14-16 months and increase further for
several years to come. That increase can be expected because of the long
latency period (estimated to average at least 5 years) from HIV exposure to
the development of AIDS. >
HIV Seroprevalence among IV Drug Abusers

However, the number of AIDS cases do not adequately describe the extent of
the problem. The human immunodeficiency virus (HIV) is transmitted from
person to person through sexual contact, exposure to infected blood and blogd
products, and prenatally and perinatally from mother to child. Altnough
sexual spread certainly accounts for some transmission between IVDAs, HIV ©
infection is pelieved to be transmitted among IVJAs primarily through sharing
of needles and syringes. Since the vast majority of IVDAs share their
injection equipment and seldom take adequate steps to sterilize the equipment:
between uses, the potential for the rapid spread of AIBS in this population is
considerable. .

Because AIDS surveillance only measures the effects of HIV exposures
several years ago, many investigators have conducted HIV serosurveys of IV
drug abusers. Most of these studies have been conducted on volunteer clients

in drug treatment programs in urban areas. I will not try to review all the

 

 
 

 

studies but will concentrate on a few studies and discuss some of the results.

The seroprevalence of HIV infections in a population of IVDAs increases
over time. This is illustrated in a study conducted by Novick et al. Tney
studied heterosexual men and women in New York City who were current or former
IV heroin abusers, were on methadone maintenance, and were enrolled ina study
of chronic liver disease. Stored sera from participants were tested for HIV
antibody. In 1978, 0/7 sera were HIV positive; in 1979, 14/29 (29 percent);
in 1980, 8/18 (44 percent); in 1981-83 14/27 (52 percent); and, in 1984, 56
percent. More recent studies in New York from several drug treatment centers
have reported that HIV seroprevalence is 60-65 percent of new admissions into
drug treatment programs. It is not clear how rapidly the uninfected IVDAs in
New York will become infected. However, one hopes that some individuals
entering methadone maintenance programs nave stopped using drugs ?
intravenously, are not sexual contacts of infected individuals, and wil]
remain uninfected.

Within a city, HIV seroprevalence rates among IVDAs may vary by drug-using
behavior, race, sexual orientation, and treatment facility. In San Francisco,
Chaisson and colleagues studied 28] heterosexual IVDAs in five major opiate
addiction treatment prograis in 1985. Ten percent of the Sudjects were HIV
seropositive. Addicts who reported sharing needles witn 2 or more persons
were more likely to be positive than tnose wno did not report Sharing .
peediles. Black and Latino participants were more likely to test positive than
whites. In another study in San Francisco, patients in detoxification

prograins were less likely to test positive than patients recruited “on the

 
 

 

streets." .

Geographical differences within populations of IVDAs in the U.S. have been
noted. Lange, NIDA, has collaborated with investigators in six regions of the
country. In 1985 and 1986, 1,770 IVDAs were tested for HIV antibody. In ilew
York City (Brooklyn and Harlem), 61 percent of 280 samples were HIV positive
in late 1986, up from 50 percent of 585 samples from the same treatment
program drawn in early 1985. In Baltimore, 29 percent of 184 samples were
positive; in Denver, 5 percent of 100; in San Antonio, 2 percent of 106; in
| southern California, 1.5 percent of 413; and in Tampa, none of 102.
Seroprevalence rates were significantly higher for Blacks than whites.

Continued follow-up and HIV testing of seronegative IVJAs should allow
investigators to track the spread of HIV infection in IVDAs in drug treatment .
programs. However, these studies do not reach drug abusers who are not in;
treatment, and therefore, are more likely to practice high-risk drug
behaviors. Also, these studies do not necessarily test the steady or casual ©
sexual partners and the children of IVDAs.

Another population studied that includes IVAs is ‘women with histories of: ::.
prostitution. The COC has conducted HIV serosurveys of prostitutes in seven:
U.S. cities. Subjects were recruited througn venereal diseases clinics and +
comaunity aavertisements, such as local newspaper ads. HIV seropositive rates
were highest for women who reported IV drug abuse, resided in areas of high .

AIDS prevalence, and were Black or Hispanic. Half of 568 prostitutes who were:

interviewed and tested for HIV antibody reported a history of IV druy abuse.

Forty-seven (76 percent) of the 62 HIV seropositive women -had used drugs

 

 

 
 

intravenously. Other populations believed to have significant numbers of
IVDAs, such as prison inmates and the homeless, nave not yet been extensively
studied.

Estimates of the number of IVDAs in the U.S.

Because of the surreptitious nature of drug abuse, it is hard to verify
the number of persons who use drugs intravenously or subcutaneously ("skin
popping"). NIOA is currently estimating the total number of IVDAs in the
United States at 1.1 to 1.3 million individuals. This estimate is based on a
number of sources, including published reports on prevalence of drug use, data
generated by the National Household survey on Urug Abuse, trends in patterns
of drug use vy clients admitted to drug abuse treatment programs, and
estimates provided py the States. ore than 100,000 I[VUAs each were reported
in New York, California, and New Jersey. In fact 39 percent of the total >
estimate was from those 3 States. The lowest estimates (less than 2,000 each)
were reported by 6 States, primarily in the upper Rocky iiountain region.

How many IV drug abusers are currently in a drug treatment program? Tne
answer to this question is not as readily available as one would like. NIDA
estimates tnat approximately 140,000 IYDAs are enrolled in treatment
programs. Therefore, one can see that many IV drug abusers are not in
treatment.

Summary

AIDS is a serious public health problem for IVDAs in the U.S. Although

AIDS and HIV infection amony IV drug abusers are concentrated in Wew York, New

Jersey, and California, AIDS has been diagnosed and reported among IVDAs in

 

 

 
 

 

all 50 States, Puerto Rico and the District of Columbia. It is quite apparent
that, once HIV is introduced into a group of IVDAs, it can spread readily |
between IVDAs, to their sexual partners, and to their children perinatally.

Unfortunately, one can only expect HIV seroprevalence rates and AlvS cases
will continue to increase amony IVWAs for at least the next several years.
Concerted efforts to develop, implement, and evaluate potential prevention |
strategies among IVuAs are uryently needed. There 1s much work to be done,
and we look forward to working with you toward defining, preventing, and

diminishing the serious problems being discussed today.

521 1m

 

 
 

 

AIDS and HIV Infection Among Latins and Other Ethnic and Racial
Minorities in the United States

Testimony to the President's Commission on HIV Infection

Edward Morales, Ph.D.

Multicultural Inquiry and Research on AIDS (MIRA) oo

Bayview Hunter's Point Foundation
6025 Third Street
San Francisco, CA 94124
415-822-4030

Executive Summary

Epidemiology of AIDS and HIV Status Among Ethnic Minorities

Among ail of the AIDS cases in the U.S. 41% are ethnic minorities of
whom, 25% are Black, 14% are Latin, and 1% are Asian or other non-whites.
Among women with AIDS in the U.S. 51% are Black, 22% are Latin, 26% are
white and 1% are unknown, which makes the total percentage of ethnic
minority women with AIDS 74%. Among the pediatric cases of AIDS 82% are
ethnic minority of whom 60% are Black, 21% are Latin, 18% are white, and
1% are of unknown ethnicity. It is projected that within five years there will
be over 270,000 AIDS cases in the U.S. (National Science Foundation,
September, 1986) and, given the current trends, 100,000 of these cases will be
ethnic minorities. Although AIDS affects all racial groups, Blacks and Latins
are represented out of proportion to their numbers in the population.

There are signs that AIDS may impact the ethnic minority communities
much more heavily in the future. In a more recently published study of HIV
infection among civilian applicants for the United States military service
from October, 1985 to March, 1986, the seropositivity rate was founded to be
higher than expected. Within this self selected group of military recruits
Burke, et. al. (1987) found that five counties had prevalence rates over 1%. Of
the total number of military applicants tested (N=306,061), the non-Latin
Blacks (n=54,945) had the highest antibody prevalence (3.89). Applicants who
were White and not Latin (n=233,000) had the lowest prevalence (0.88). Latins
(n=5,309) had a prevalence rate of 1.07 and those of other racial and ethnic
groups (n=12,807) had a prevalence rate of 2.42. These findings suggest that
the minority communities are overrepresented both as people with HIV
infection and as people with AIDS. These data suggest that the minority
communities will continue to be heavily affected by the AIDS epidemic.

Information on Asian American populations whether Chinese-Korean,
Japanese, Filipino-American or Southeast Asian immigrants is extremely

 

 
 

 

limited as is data on Native Americans. In most statistics these groups are
reported as a single category called "Others". Using a "catch all" category like
"Others" facilitates the community's denial that AIDS affects their members.
Without accurate reporting of different ethnic and racial groups the data
reported can not be used to estimate the impact of AIDS in those
communities.

In a study of seroprevalence in San Francisco 16% of the Black and Latin
IV drug users were found to be positive as compared to 8% of the Whites (
Chaisson, 1987). The overall seropositivity rate for the clinic was 10%.
.Preliminary data from ongoing research studies indicate that the overall rate
of infection among IV drug users is rapidly increasing in San Francisco. The
pace of the epidemic among IV drug users is parallel to what New York City
had experienced four years ago with an estimated infection rate of about 20%
(Hardy, 1987) Currently, New York City estimates that 70% of the IV drug
users are infected (Des Jarles, 1987).

AIDS and the Latin Communities

The AIDS effort directed toward the Latin community has been severely
limited. Translations of AIDS information materials were not available until
1985. Until 1986 there were no Latin agencies funded to provide education
and prevention services to the Latin community in California. In the area of
AIDS research none of the existing data bases throughout the country have an
adequate sample of Latin subjects in their cohort studies. Until September,
1986 there were no studies funded by the federal government on AIDS in
minority communities. Latin researchers had not been involved in the AIDS
research effort despite the need and the evidence of AIDS among Latins. The
focus of research had centered around White gay men and some research
efforts were focused on IV drug users.

There are no studies in the literature that report on the sexual practices of
Latins. Some of the literature focuses on sex roles and attitudes with a few
studies on the attitudes about contraceptives. The challenge of the AIDS
research effort is to develop and create a new set of measures that are
appropriate for Latins. AIDS research efforts would need to consider how the
Latin communities would react to sexually explicit questions, or questions
that are designed to provide personal and private information about their
lifestyles.

In communicating the AIDS health message other barriers have been
noted. Many people do not see themselves in danger of being infected with
AIDS even though they engage in high risk behaviors. In the AIDS
prevention effort the sharing of needles is associated with IV drug abusers. It
is well known that in many Latin countries people have trained themselves,
a family member, or a trusted neighbor to be phlebotomists. Due to the lack

 

 
 

 

of skilled medical personnel, many people take vitamins and medications
prescribed by a physician through injections.administered by designated |
persons in the community or family. This practice is usually continued in
the U.S.

Minority Gays and Bisexuals | \

Since the identification of AIDS in 1981, there has been an explosion of
research related to the diagnosis, treatment, and prevention of AIDS. Yet, of
all those at risk for AIDS, Black and Latin homosexual men may be ignored in
-research efforts. Given the extent of risk they face, this lack\of research poses
serious problems. This risk is underlined by the following gbservations: 1)
homosexual men constitute the largest AIDS risk group among Black and
Latin AIDS cases (46% and 55% respectively); 2) 26% of homosexuals with
AIDS are Black and Latin homosexual men; and 3) recent reports
(Winkelstein) suggest that the rate of HIV infection is higher in Black and
Latin homosexuals. While these figures suggest a high vulnerability to HIV
infection, the reasons remain a mvstery. There are almost\no studies of the
practices and lifestyles of minority homosexual men, thus there are few clues
as to how prevention sirategies—aimed at alerting men to the dangers of
certain behaviors—might be developed.

Little to no attention has been given to the needs and concerns of gay and
bisexual minority men yet they represent 20% of all of the AIDS cases in the
U.S. Of these minority men many of them prefer to see themselves as
bisexual rather than gay. The process of identification is complicated by the
limited formal support systems available in the community for minority gays
and bisexuals, such as business establishments, social clubs, and
organizations. Minority gays and bisexuals find themselves living in three
different worlds each with their own challenges and conflicts. Within the
minority community they experience the homophobic attitudes, within the
gay community they experience the racism of the predominantly White gay
community, and within the mainstream society they experience both the
homophobia and racism. In directing the AIDS effort it is important to
understand minority gay and bisexual men so that the appropriate
communities are reached.

Awareness of AIDS prevention practices among minority gays is critical.
One published report (Williams, 1986) described a community survey in
Detroit which found that Black gay were less informed about the AIDS
epidemic than Black IV drug users. Among the Black gay men surveyed:
"Only 8 (13%) of the 62 respondents correctly identified that the AIDS virus
was transmitted through blood and semen. Poor understanding of how the
virus could explain why only 12 (19%) of the respondents expressed that they
were very worried 'that they might get AIDS.’ Approximately 37% reported
they were ‘not worried’ about possible infection."

 

 
 

 

IN

AIDS Education, Preverition and Research Efforts in San Francisco
for Ethnic Minorities

The educational efforts designed for the minority communities are
severely limited in San Francisco, as well as, in other cities throughout the
nation. Locally, several efforts have begun which have been funded through
local and State funds. In the Spring of 1986 the Multicultural AIDS Needles
Users Project (MANU) was founded and a grant awarded to the Bayview
Hunter's Point Foundation ($100,000) by the S.F. Community Substance
- Abuse Services. MANU is a consortium of Black, Latin, and Asian substance
abuse providers providing an array of prevention services to IV users. The
State of California awarded The Bayview Hunter's Point Foundation (BHPF)
$150,000 for fiscal 1986-87 for the Multicultural Alliance for the Prevention of
AIDS Project (MAPA) whose goals are prevention educational efforts directed
to the Black, Latin and Asian communities in San Francisco. The alliances of
MANU and MAPA included a consortium of minority organizations. These
crganizations are the Asian American Residential Recovery Services
(AARRS), Horizons Unlimited, Multicultural Prevention Resource Center,
Westside Mental Health Center, and BHPF. In 1986 the State also awarded E]
Instituto Familiar de la Raza $130,000 for an AIDS prevention and education
project designed for the Latin communities. Currently all projects are funded
by the State through the city and county of San Francisco.

In 1986 the Center for AIDS Prevention Studies (CAPS) was funded by the
National Institute of Mental Health (NIMH) and the National Institute on
Drug Abuse (NIDA). The grant incorporates the University of California, San
Francisco (UCSF), the City and County of S.F. and the BHPF. The
Multicultural Inquiry and Research on AIDS (MIRA) is the AIDS research
department of the BHPF staffed by ethnic minority researchers on several
AIDS prevention research projects.

Several citizens groups have been formed within the past two years to
advocate for AIDS services and prevention efforts designed for the minority
communities. The Latino Coalition is a group of concerned citizens who
together generated the resources within the community to assist El-Instituto
in acquiring the State grant for AIDS prevention. The Black Coalition has
been formed to advocate for the Black Communities’ concerns. The Asian
Coalition on AIDS has also been formed to address the growing needs of
AIDS among Asian and Pacific Islanders. The Black, Latino and Asian
Coalition are developing plans for a national conference on AIDS in the
Minority communities to be held in San Francisco in the Fall of 1988.

The Bayview Hunter's Point Foundation together with the S.F. Health
Department sponsored a Rap contest for adolescents on preventing STD's,
substance abuse and AIDS. There were many participants in the Rap contest

 

 
 

 

and some the involvement of adolescents in the prevention effort was found .

to be constructive and educational for youth.

The Native American community has developed an interest in AIDS and
is beginning to develop an AIDS effort within their agencies. The Friendship
House, an alcohol residential service in San Francisco, has had training
sessions and workshops on AIDS for their residents and staff. Several
individuals from the Corporation for American Indian Development in San
Francisco have been consulting with the State of California to develop an
AIDS plan for Native Americans in the state. The National Center for
.American Indian and Alaska Native Mental Health Research at the
University of Colorado Health Sciences Center is sponsoring a National
Conference on AIDS and American Indians in the Fall of 1988.

The Third World AIDS Advisory Task Force was the first Multicultural
advocacy organization to work together toward increasing the AIDS effort for
minority communities. The task force was able to conduct a regional
conference on AIDS in the Minority Communities which was held in the
Spring of 1986 in San Francisco.

Multicultural Inquiry and Research on AIDS (MIRA)

The Multicultural Inquiry and Research on AIDS (MIRA) is a research
component of the Center for AIDS Prevention Studies (CAPS) which is
located at the University of California, San Francisco. CAPS is one of three
AIDS research centers funded by NIMH and NIDA since September, 1986.’
MIRA focuses on research on AIDS in ethnic minority communities and is
part of the Bayview Hunter's Point Foundation. Originally called the Third
World Component of CAPS the name was changed to MIRA with the
acronym in Spanish meaning "Look!" (commonly used to call attention,
similar to the English use of "Hey!") to underline both our concern with
ethnic minority issues and our desire to draw attention to these research
concerns.

Specific Aims of MIRA _

1) To investigate the impact of providing AIDS education to communitv
leaders. A randomized trial is proposed with Black and Latin community
leaders to test the efficacy of a series of health education workshops in
increasing awareness of AIDS, challenging attitudes towards AIDS, and
increasing participation in the AIDS prevention effort.

2) To collect and review existing epidemiological data on AIDS in minority
populations.

3) To stimulate research on AIDS in ethnic minority communities, by:

 

 
 

 

a) conducting pilot research studies proposed by community-based
researchers;

b) including a post-doctoral fellow in the staffing of the component; and

c) providing technical assistance to community-based researcher.

4) To carry out a prospective cohort studv of a population based sample of
single Black, Latin, and White men and women, age 20 - 44, in San Francisco
drawn from high risk multicultural communities in order to:

a) ascertain the prevalence of HIV infection, of risk behaviors, and of co-
factors related to the spread of AIDS;

b) assess the basic: knowledge, sources of health information, social
paranoia and social contacts related to the spread of AIDS;

c) ascertain the changes in the prevalence of HIV infection, of risk
behaviors, and of co-factors and assess changes in the basic knowledge, in the
credible sources of health information, in social paranoia and in social
contacts related to the spread of AIDS.

Recommendations

1) In developing AIDS prevention, education and research efforts it is critical
that ethnic minorities be included in the process of planning, developing, and
implementing suchiefforts. This includes teams of ethnic minority scientists,
community leaders; community based agencies, and those who are in the risk
groups, e.g. persons with AIDS, ARC and HIV positive, IV drug users, and gay
and bisexuals.

2) Each state, county, city and community in the U.S. be charged with
developing a Five Year AIDS prevention Plan that includes goals and
objectives for each year. Ethnic minorities need to be included in the
planning process and their communities addressed in the plan.

3) A plan for developing human resources within the ethnic minority
communities for the AIDS effort is critical. Specialists are needed in order to
develop and implement AIDS prevention efforts in ethnic minority
communities. Training programs focused on AIDS within ethnic mirority
communities would be an important way to meet this need. Courses within
existing educational institutions need to include the development of
expertise concerning AIDS in ethnic minority communities.

4) Across governmental departments the grant cycle needs to be shortened in
order to meet the immediate needs of the AIDS epidemic. Typically research
grants require nine months to a year from submittal of the application to the
initiation of the research effort. In light of the rapid nature of the epidemic,
research ideas may be outdated or not feasible due to the change in
epidemiology and populations affected. For instance a study on prevention
for IV drug users in San Francisco submitted today may need to change its

 

 
 

VI]

focus to treatment by the time the grant is approved for funding because of a
rapid change in epidemiology among IV users. —

5) Gay and bisexual minority men are virtually ignored in AIDS prevention
efforts throughout the nation. Under reporting can be expected from this
group due to the social stigma associated with homosexuality. Research and
prevention efforts targeted for this group are critical. Those who are bisexual
can be the conduits for transmission into the heterosexual community.

6) Unlike the White communities in the U.S. an epidemic within the

. heterosexual minority population is imminent and appears to exist. in certain
parts of the country. The AIDS effort needs to include prevention for
minority women across all ages.

7) For IV drug abusers interventions that enhance the personal, one to one
contact with peers are more effective. Street outreach workers staffed by ex-
addicts may be our best defense against AIDS for IV users. Verbal
communications within this group appear to be the most effective means of
communicating health messages rather than the use of mass media, ads in
newspapers, or technical brochures. Flyers, posters, and AIDS survival kits
that contain condoms, lubricants with non-oxynol 9, and bleach appear to be
most effective.

8) Changes in sexual behavior appears to be the most difficult challenge
within minority communities. Communicating effective safer sex messages
will need evaluation. Behavioral scientists may be instrumental in
developing ways of communicating sex information to minority populations.
Research efforts that use focus groups, ethnographic methodologies, and
interviews may be the more effective ways of discovering methods for
delivering the AIDS prevention message.

9) It is critical that the AIDS prevention messages focus on behaviors and not’
risk groups. The sharing of needles occurs in many cultures and countries
and is not specific to IV drug abusers. Some persons use the same needle to
inject vitamins and prescriptive medications which may be customary in
their country.

10) Minority adolescents in urban areas are at great risk for being infected —
with AIDS. Prevention efforts using other minority adolescents may be an
effective means of informing this group. Implementing Rap contests on
preventing STD's, substance abuse and AIDS have been used in the Bay Area
and found to be effective. '

11) Women and children most affected by AIDS are Black or Latin. AIDS
prevention and education efforts directed to minority women should be a
part of the planning process for each community and the nation.

 

 
 

 

 

Wii

12) Given the continued growth of the epidemic among childyén born to «.
parents who are infected, by the 1998 the number one cause for mental °
retardation is expected to be AIDS (Vietze, 1987). Treatment for children who
are infected, have ARC or AIDS needs careful planning and trained: Personnel
to implement special programs.

 
 

 

TESTIMONY

The Commission On The

 

Human Immmodeficiency

Virus Epidemic

 

Yolanda Serrano/President

Association For Drug Abuse

 

Prevention & Treatment, Inc.

(ADAPT)

 

 
 

i

Good morning Mr. Chainnan and Members of the Commission on the Human Tnmurodeficiency
Virus Epidemic: Thank you for ‘the opportunity to testify before this ‘Commission and
provide the Commission with grassroot, frontline experience of the impact of AIDS

on the minority commmity. § The task before the Commission is a majof one. AIDS

is the number one public health crisis facing our nation today and if we do not
immediately find ways to curb the further spread of AIDS, it will continue to spread
to the rest of Americans. AIDS requires a federal response and through the testimony
of the Country's experts to this Commission, I believe our President will be in-
formed of the urgency of the problem facing our nation. AIDS has impacted the
hardest in our minority communities, thus far. Not because they are Black or
Hispanic, but Gue to the lack of education and resources to these commmities.

For the pasc six years of the epidemic, intravenous drug users played a critical

role in the transmission of the epidemic in the minority commmity, without the
people in the community knowing they were being infected. ‘The heterosexual and
perinatal transmission of AIDS within the minority commmities is devasting

these communities and the intravenous drug user is the major source of trans-

mission.

Acquired Immune Deficiency Syndrome (AIDS) has come to represent one of the
biggest afflictions of modern times with tremendous individual and social costs.
The groups suffering the most profound consequences of , and at greatest risk for
AIDS are ethnic minorities with the lowest national incomes, limited health care
knowledge and the poorest access to health care. Historically minorities had
limited access to quality care, primarily due to economic factors. Social
cultural barriers such as language, social class, education and non mainstream
nealth care beliefs have affected minority commmities. A minority person who
develops AIDS might suffer from impaired health before the disease and might

delay treatment until later in the progression of the disease. Minorities

 

 
 

 

-2-
do not have private medical doctors and they rely on hospitals emergency roans’* .
for medical care.- Many persons with AIDS are neither diagnosed nor treated - °
for AIDS related conditions until the disease is too advanced. Many intra-
venous drug users and their sexual partners are dying in the ARC ‘(AIDS Related -
Complex) stage of the disease. The result is that all ‘nunbers pertaining to,
the minority commmity are being underestimated and many more people of color
are dying. | ‘ .
The number of AIDS cases among the minority commmity increases everyday. As of
December, 1987 of the cases reported to date in the United States, 29,846 (60%) were
White, 12,436 (258) were Black, 6,964 414%) were Hispanic and 190 (18) were other.
Centers For visease Control data shows that AIDS patients who are intravenous drug
users are predominately Black (51%) and Hispanic (30%). _ Blacks who comprise. 12 |
percent of the United States population account for "percent of the AIDS cases.
Hispanics, who account for 6 percent of the United States Population, eceount

14%
for percent of the AIDS cases, double their proportional representation in 1 the

3

population. . .

AIDS is spreading at a fast rate in urban minority populations due to the disease
of addiction, which is progressive, chronic and if left wntreated fatal. Com ~
pounding the disease of addiction is HIV infection. The minority ‘communities: -‘
are the most vulnerable to the spread of AIDS due to the high incidence of-’ '
intravenous drug'use. An important fact ‘is that we are not only speaking about '
' intravenous drug use, but all substance abuse which impairs your judgement and
places the persor’'at risk for AIDS. It has become increasingly clear that intra-
venous drug use is a major factor contributing to the disproportinately high rate
of AIDS in the minority community. In New York City infection rates ‘among: intra-

venous drug users have increased to 53 percent of all AIDS ‘related deaths. . The

 
 

 

-3-
consequences of this spread of infection among minorities extends beyond the
drug users, to their sexual partners and their children. The course of the

epidemic is being determined by the intravenous drug user. As it stands now,

AIDS, the intravenous drug user and the minority commmity are linked.

In New York City there are an estimated 250,000 intravenous drug users. It

is estimated that between 70-80 percent of the intravenous drug users are
infected with the HIV virus. Intravenous drug users are not socially or
politically organized and they are difficult to access. Present services are
not geared to meet the needs of this group. Because of the underground nature
of the group, they can only be reached effectively through their own informal
networks. They are mainly concerned with their economic survival. They do not
have much connection with mainstream welfare systems. Therefore, the services
has to be taken out to them. ADAPT has been able to enter the world of the
addict , on their level and gain their confidence. We are in a position to
effectively reach the hard core active addict in the streets, in shooting
galleries or wherever they congregate and establish lines of communication with
them. ADAPT's approach to reaching the IV active addict and entry into their
subculture is clearly what is needed to contain this epidemic from further de-
vasting our minority commmities. ADAPT has created a bridge to the IV active addict.
We have achieved this through outreach workers/culture brokers. ‘Those with
experience and or training in both worlds. Through the outreach workers infor-
mation is transmitted to the IV active addict.in a culturally familiar.and non-
threatening environment. Intervention is done on site. Sterilization information,
referrals to treatment and other services are provided on the spot. At the time
when the IV “active addict is motivated to seek treatment. Our experience has
been that when we go into the streets addicts are begging for treatment. They
are desperate to get off the streets, off the drugs. Addicts speak of their

families and their desire to go back to the way they once were. Again, we are

 

 
 

 

-4-

talking abeut the cisease of addiction. Until our leaders begin to see heroin
addiction as a disease, we are going to continue to have drugs destroying our

young children and no services will be provided.

Statistics show that the majority of women with AIDS in the United States are
poor minority women from inner cities. In the United States women with AIDS are
32 percent slack and 19 percent Hispanic. Of the 1,200 women with AIDS in New
York City, 30 percent were intravenous drug users or had sex with an intrave-
nous drug user. Also, 80 percent of the 235 children with AIDS contracted AIDS
through the mothers who were intravenous drug users or had sex with intravenous
drug users. Women of color and their children are impacted by this disease.
Women are the fastest growing group of people with AIDS. As of November, 1987 in -
New York 55 »ercent or 665 women with AIDS were Black, 32 or 414 were Hispanic

and 16 percent or 219 were White. ‘Women who are intravenous drug users are 52
percent Black and 32 percent Hispanic. The nunber of children with AIDS continues
to double every 8-9 months. Over 90 percent of children affected are of color,

57 percent Black and 33 percent Hispanic. The New York State Division of
Substance Abuse Services estimates that there are 50,000 to 60,000 women in New
York City of child bearing age who are intravenous drug users, amd who may be
infected with HIV: already. In 1987 alone, some 3,000 of these women will give
birth. The chances of these babies being born with AIDS are very high. There is
a need to educate women of the dangers of HIV infection. Many women believe if
they are using certain types of birth control such as the pill they are safe.

The risk to women in the minority conmmity needs to be nore prominently placed in
the literature and in the media, emphasizing risk behavior over risk groups. In
addressing women and especially minority women, programs must be geared at empowerin
women to become more assertive in negotiating safer sex and condom use. Repro-
duction issues are of grave importance to our minority conmmities. Women have

to know the options available to them prior to becoming pregnant. Pregnancy is

 
 

 

rr

a

thought to unerease an infected women's risk for developing full-blown AIDS. In
addition, AIDS can be passed on to her baby during pregnancy, through breastfeeding
and through artificial insemination. Women need to know their risk of being ex-
posed to the HIV virus. It is especially critical that women who are intrave-

nous drug users receive pre-natal care early in their pregnancy. Many women

who are IV active or in drug treatment programs do not menstruate at regular
interval and their options are restricted, when at five months they discover

they are pregnant. Many women believe AIDS only affects gay men and men who

share needles. This is the message that is consistently being put on the media.
The belief that only gay men contract AIDS is especially dangerous to women. The

message must be clear that AIDS can‘affett anyorié who engages in risk Behavior.

When we speak about women who are intravenous drug users, we are speaking about
poor inner city Black and Hispanic women. These women are at double the risk, due
to engaging. in prostitution to support a drug habit. At present time there is

no direct educational effort to educate women in the industry. An outreach pro-
gram targeted at women and men in the sex industry mist be implemented to provide
AIDS education, referral to health services and other agencies as needed. The
program sho.ld be aware and sensitive to those issues affecting those working in
the industr. The program developed should be. acceptable and accessible to its
clients and identify and respond to the needs of the clients. Services should
include referrals for general check ups, pap smear and breast examinations, STD
screening, full contraceptive services, pregnancy tests, drug and alcohol counseling,
health and welfare information, free condoms and other services. We must develop
literature geared to the women and men in the sex industry. In view of the poten-
tial spread of AIDS, it would seem prudent to increase the level of understanding
at street level as soon as possible. However, it is useless to seek to educate
the prostitutes without seeking to educate their clients, who are predominately
heterosexual males, who control the nature of the sexual contact and actually can

=)

 
 

 

/ -6-

carry the virus to their families. Present services are not geared to meet the
needs of these groups. The incidence arid prevalence of AIDS in the commmity can
be expectec to continue to increase. The greatest risk factors for contracting
AIDS are multiple sexual contacts and sharing needles and syringes. Therefore, '
prostitutes and intravenous drug users are major risk groups. In addition, the’
clients of prostitutes provide a pathway for the virus to enter the general
community. Both groups are illegal and stigmatized and cannot be reached through
traditional channels. There is substantial cross-over between the two groups be-
cause a significant number of people belong to both, they share the same geo-
graphic location and they are both exploited by organized crime. The size of

the problem is easily demonstrated. If 1,000 prostitutes work in New York City
(streets, brothels, parlours; escorts and private) and each service 6 clients
per day, this represent 6,000 men per day. If each prostitute works 4 days per
week (many work 7 days per week), then a minimum of 24,000 men have contact with

a prostitute each week in New York City alone. ‘These numbers are very conservative.
|

A major concern to the minority commmity is the dramatic increase in syphilis
that is concentrated among men ard women! in urban areas, with the number of

cases rising faster among Black and Hispanic people. Nationwide, syphilis cases
are up 35 percent this year over last year, with most of the increases in poorer
areas of some major cities. The number of syphilis cases has more than doubled
in New York City, is up 97 percent in Los angeles and has risen 86 percent in
Florida. There is a clear threat that the increase in syphilis among adults may
create a rise in congenital syphilis among infants and a rise in AIDS cases among

heterosexual residents of poor inner-city neighborhoods.

The incidence of AIDS and AIDS Related Conditions among persons who come in
contact with the Criminal Justice System in New York is increasing with each
passing day. As of April 1987-a total of 401 inmates have died from AIDS in

New York. The vast majority of infected inmates were intravenous drug users, and

 

 

 

 
 

 

-7-

were Black (39) percent and (46) percent were Hispanic. ' Because there is no
cure for AIDS in the immediate future, education and training for both staff
and inmates should be provided. Correction Officers can be utilized as AIDS
Educators, since they come into contact daily with the inmates. They have a
captured audience and they have an opportunity to educate the inmates constantly

prior to their release.

The issue of Gay/Bisexual men within the minority commmity can not be covered
up any loncer. The minority gay community does exist and they are dying of
AIDS. The minority gay community are often not closely allied with the white
gay commmity. Therefore, no services are being provided at this time. There
is also the issue of homophobia within the minority commmity in general. In
order to ccntain the spread of HIV, we must break through these barriers and

throughly ecucate our conmunity.

Adolescent Minority Children and AIDS is a great concern for the minority
commmity. Adolescents are ill informed about AIDS. We must develop programs
to reach our children, before they start experimenting with sex and drugs. We
must develop innovative teaching tools such as parent education classes, address
the drép out population, pregnancy problems and other conflicts that affect our

teenage children.

Prevention for minority commmities for the future ADAPT believes must basically

be grassroot. We need to get out to the streets and on a one to one basis, educate
the commmuity. Many people in our conmumity have a language problem. Informa-
tion must be simple, culturally sensitive and to the point ~ We mist provide

every person addicteé to drugs free drug treatment programs. ‘There is an urgent
need for Washingtcn to hear and know that drug prograns equal life in the 1980's.
It is a matter of life and death for a certain segment of the United States. It

is a matter of life and death, not only for the intravenous drug user, but for his

 

 
 

 

-§-

Sexual partner and their children. There are thousands in New York City,
thousands of mirority pecple, women, children, men living in welfare hotels,
at the YMCA uncertain about the future, dying isolated abandoned, starving at
times, dying undignified painful lonely deaths.” ‘

\

In conclusion, I want to express and share my feelings of anger and sadness at
seeing Gay after day sick, dying children, women and men. In the minority
community tnere has been neglect and the result is that these communities are
devasted by illness and death. I can testify to you here today, that there are
hundreds of neighborhoods, where the virus is spreading like wildfire, with no
one realizing how it is slowly traveling and invading all segments of our society.
It is a real threat that this virus can become self sustaining in the heterosexual
comminity, if we do not immediately provide the necessary resources to curb the
virus. It is too late no matter what we do now, for those with AIDS, those who
will develo AIDS and the children who will be born with AIDS within the next few
years. ‘Through ADAPT's work in the streets in the shooting galleries, in the
prisons of New York City, we really know and see the danger that lurks. ADAPT has
seen the tremendous concern and interest of intravenous drug users to protect
themselves and their families. JI have seen some heroic efforts to make a change in
their behavior. It is sad, it is too late for most of New York City's and other
major cities intravenous drug users. No one bother to warn them six years ago.

I have seen women facing death and wanting to protect their children. Again,

it is too late due to lack of information, awareness, a tool on how to protect
themselves. It is too late for many. I spent many days in New York City's
shooting galleries giving bleach, alcohol, condoms, providing AIDS. information,
offering and making referrals to drug treatment programs (detox, methadone or
drug free). I am able to witness first hand the destruction of addiction and the
Slow destruction which is occurring in the minority community. We need more

weapons to fight AIDS.To contain the HIV epidemic, we need massive resources that

 
 

 

— G9 «

only a federal response could make available to the American people. Through
ADAPT's work in the streets, it is clear that addicts would respond to free

a@rug treatment programs. By eliminating the cost or economics of treatment and
assuring fast treatment, addicts could pe reached. In addition, by having addicts
in treatment, we can offer AIDS education and begin the process of behavior modi-
fication. Treatment is prerequisite to effect behavior change. Addicts can
change their behavior. Addicts care about their health, their families but

the disease of addiction is too powerful. We must establish appropriate program

response.

To prevent AIDS within the minority community we must have commmity resources

for dealing with AIDS. We must utilize the family structure of minority commmities.
There are particular strengths of Black and Hispanic families that can be utilized
in commmicating information about behavior that puts them at risk for AIDS. We
must develop effective messages for Black and Hispanic people, including the

use or street jargon. We must look at conmmmity systems and the importance of
networking in reaching Black and Hispanic intravenous drug users and their sexual
partners and their families. ‘he family can be used as a prevention-educatior.

network as well as the commmity system within the conmmities.

Whe threat of AIDS to society is very real. It has taken too long for people

in leadership positions to respond. Time is running out. ADAPT is witness to
the devastation which is occurring in minority commmities such as Williamsburg,
Brooklyn, Lower East Side, New York City and the South Bronx, Bronx. If you were
to come with us in our journey into these war zones, you will be able to see the
HIV virvs at work. You will be able to see first hand the truth and will under-

stand the urgency with which I came here before you today.

 
 

 

TESTIMONY

OF

HONORABLE BENJAMIN A, GILMAN

RANKING MINORITY MEMBER

SELECT COMMITTEE ON NARCOTICS ABUSE AND CONTROL

BEFORE THE PRESIDENTIAL COMMISSION ON THE

HUMAN |MMUNODEFICIENCY VIRUS EPIDEMIC

138 DIRKSEN SENATE OFFICE BUILDING

THURSDAY, DECEMBER 17, 1987

 

 
 

“MR. CHAIRMAN AND MEMBERS OF THE COMMISSION:

LET ME CONGRATULATE YOU, ADMIRAL WATKINS, UPON YOUR
APPOINTMENT AS CHAIRMAN OF THIS DISTINGU!SHED COMMISSION,
| WISH YOU AND YOUR COLLEAGUES GODSPEED AS YOU’ TACKLE THE
CRITICAL AND COMPLEX TASK YOU HAVE BEEN CHARGED WITH. |
WOULD ALSO LIKE TO CONGRATULATE OR. BENY PRIMM, WHO HAS
TESTIFIED BEFORE OUR HOUSE NARCOTICS SELECT COMMITTEE ON
NUMEROUS OCCASIONS, AND WHOSE SAGE ADVISE AND COUNSEL HAVE
REEN OF GREAT BENEFIT TO THE COMMITTEE'S MEMBERS. | AM
CERTAIN THAT WITH HIS CONTRIBUTION TO THIS COMMISSION,
ADDITIONAL INSIGHT WILL BE GAINED REGARDING THE MANY
PROBLEMS AFFECTING THE INTRAVENOUS DRUG ABUSING COMMUNITY,

| WOULD ALSO LIXE TO COMMEND THIS PRESIDENTIAL
COMMISSION FOR RECOGNIZING THAT IV RELATED AIDS WARRANTED
ADDITIONAL INVESTIGATION, AND | WELCOME THIS SECOND
OPPORTUNITY TO DISCUSS THE MATTER WITH YOU TODAY. WE ALL
REGRET THAT SUCH A FOLLOW-UP 1S NECESSARY, SINCE IT
INDICATES THE SERIOUSNESS OF THE PROBLEM, YET PERHAPS
TOGETHER, WE CAN FASHION WORKABLE SOLUTIONS.

MR. CHAIRMAN, LESS THAN THREE MONTHS AGO, CHAIRMAN
RANGEL AND | APPEARED BEFORE THIS COMMISSION TO DISCUSS THE
GROWING DANGERS OF AIDS AMONG INTRAVENOUS DRUG ABUSERS. AND
ULTIMATELY, THE HETEROSEXUAL COMMUNITY, UNFORTUNATELY,
THOUGH IN THE PAST QUARTER, THE SITUATION HAS NOT CHANGED,
WHICH IN THIS CASE “EANS THAT THINGS HAVE GONE FROM BAD TO

 

 
 

 

WORSE. THERE ARE CURRENTLY 47,999 DIAGNOSED CASES OF HIV, .
AND THE PERCENTAGE OF THOSE WHICH ARE IV DRUG RELATED HAS
REMAINED STABLE, AT ABOUT 25%, THE VAST MAJORITY OF IV
DRUG ABUSERS SUFFERING FROM AIDS ARE BLACK AND HISPANIC,
AND THEY ARE MOSTLY HETEROSEXUAL .

IV DRUG USE CONSTITUTES 59% OF THE CASES OF FEMALE
“AIDS, AND THE HIV VIRUS IS NOW THE LEADING CAUSE OF DEATH
FOR WOMEN IN NEW YORK CITY BETWEEN THE AGES OF 25 AND 34,
WHAT WE NEED TO COMBAT THE HIV VIRUS, AS IT AFFECTS THE
DRUG ABUSING POPULATION SPECIFICALLY, ARE EFFECTIVE
PROGRAMS TO INFORM AND TREAT IY DRUG ABUSERS AT RISK FOR
AIDS. ON THE HEELS OF INFORMATION COMES THE NEED TO
IMPLEMENT A COMPREHENSIVE COURSE OF TREATMENT AND
PREVENTION FOR THESE “ANY INDIVIDUALS,

PRIOR TO ENACTMENT OF THE LANDMARK ANTI-DRUG ABUSE ACT
OF 1986, WE LEARNED THAT IN NEW YORK, FOR INSTANCE, MANY
DRUG TREATMENT FACILITIES WERE RUNNING AT OVER 190%
CAPACITY. EVEN WITH THE INFLUX OF NEW AND ADDITIONAL
FEDERAL DOLLARS, MANY CENTERS ARE STILL HAVING TO TURN
PEOPLE AWAY. ADD TO THIS A NEED TO COPE WITH THE AIDS
PROBLEM AMONG THE DRUGS ABUSING POPULATION, AND YOU SEE THE
REAL NEED FOR AN ADD) SEDERAL RESPONSE TO THE EPIDEMIC OF
AIDS, LAST SUMMER THe S=LECT COMMITTEE ‘CONDUCTED A MISSION

 
 

-3-

Lf

TO EUROPE AND NORTH AFRICA, WHERE THE DICUSSION OF DRUG
RELATED AIDS WAS HIGH ON OUR AGENDA. ‘WE MET 'NITH DR, -
RAYMOND DEDONDER, DIRECTOR OF THE PARIS-BAScD PASTEUR”
INSTITUTE, AS WELL AS WITH DUTCH OFFICIALS AND OTHER HEALTH
PROFESSIONALS, THE NEED FOR A GLOBAL STRATEGY TO RESPOND
TO THIS NEWEST PART OF THE HIV EPIDEMIC IS CLEAR. THE
FRENCH GOVERNMENT BELIEVES THAT UP TO 299,099 PEOPLE IN
FRANCE MAY BE CARRYING THE AIDS VIRUS. BETWEEN 69-89
PERCENT OF HEROIN ADDICTS IN FRANCE ARE ALREADY CARRIERS.
THERE ARE OVER 1,993 REPORTED CASES OF AIDS IN ENGLAND
SCOTLAND AND ‘WALES. THE 8RITISH HOWEVER, HAVE MOUNTED A
$34 MILLION MEDIA CAMPAIGN WHICH SPECIFICALLY AIMS AT ORUG
ADDICTS AND POTENTIAL DRUG USERS. IN SCOTLAND, INTRAVENOUS
NRUG ABUSERS REPRESENT 56% OF THE MORE THAN 1,299 PEOPLE IN
SCOTLAND KNOWN TO BE INFECTED WITH THE VIRUS. THE FIGURE
IS 7% 1N THE REST OF BRITAIN.

THESE FEW EXAMPLES GRAPHICALLY ILLUSTRATE THE NEED FOR
STEPPED UP EFFORTS WORLOWIDE. TO EXPAND RESEARCH,
PREVENTION, AND TREATMENT ACTIVITIES.

AND ALTHOUGH A GREAT DEAL OF INFORMATION ABOUT THE
AIDS VIRUS AND ITS MODES OF TRANSMISSION HAVE BEEN
PUBLICIZEDIN THIS COUNTRY, WE NEED MORE OF IT, AND WE NEED
TO STRESS IMPLEMENTATION AS WELL. WE NEED TO FOLLOW

 

 
 

 

\

UP INFORMATIONAL EFFORTS WITH VIABLE PROGRAMS THAT
IMPLEMENT QUR GOALS OF PREVENTION, TREATMENT, AND REDUCTION
OF TRANSMISSIBILITY,~ OTHERS HAVE TESTIFIED BEFORE THIS
COMMISSION OF THE GAPS WHICH EXIST IN TREATMENT OF HIy
SHORT OF HOSPITALIZATION. IF WE 90 NOT ADDRESS THE PROBLEM
OF IV RELATED AIDS SOON, THE CENTERS FOR DISEASE CONTROL
WILL HAVE TO ADUUST ITS GRIM FIGURES.

AS YOU MAY BE AWARE, CHAIRMAN RANGEL AND | INTRODUCED
LEGISLATION EARLIER THIS YEAR WHICH WOULD AUTHORIZE $499
MILLION IN GRANTS FOR A VARIETY OF AIDS RELATED DRUG
TREATMENT ANO ORUG ABUSE PREVENTION SERVICES. H.R. 3292,
"THE INTRAVENOUS SUBSTANCE ABUSE AND AIDS REVENTION ACT OF
1987" 1S VIABLE AND FORWARD MOVING LEGISLATION THAT
DESERVES SERIOUS CONSIDERATION,

THESE GRANT MONIES WOULD ALLOT $299 MILLION FOR
TREATMENT AND COUNSELING SERVICES FOR 1V DRUG ABUSERS, $109
MILLION FOR DEMONSTRATION PROJECTS TO REDUCE THE INCIDENCE
OF AIDS IN INFANTS, WITH THE REMAINING $199 MILLION FoR
PROJECTS THAT PREVENT THE SPREAD OF AIDS THROUGH IV
SUBSTANCE ABUSE. THIS WOULD INCLUDE EDUCATIONAL OUTREACH
EFFORTS SUCH AS MASS MEDIA COMMUNICATION. YET WE ARE ALL
COGNIZANT OF THE FACT THAT AIDS IS STILL A CONTROVERSIAL
TOPIC ON CAPITOL HILL, WHICH HAS LED TO A STALEMATE
LEGISLATIVELY, ~

~

 

 
 

 

THEREFORE, MR. CHAIRMAN, WE LOOK TO YOUR COMMISSION
FOR THE LEADERSHIP, GUIDANCE, AND IMPARTIAL EXPERTISE THAT
IS SO SORELY NEEDED IF WE ARE TO COMBAT THIS NEWEST
EPIDEMIC, ‘WE HOPE THAT THE NEW YEAR WILL BRING NEW
INSIGHTS AND A REDOUBLING OF EFFORTS TO FIND COMPREHENSIVE
AND COMPASSIONATE SOLUTIONS TO THE TRAGEDY OF AIDS, AND
ASSURE YOU OF THE NARCOTICS SELECT COMMITTEE'S READINESS TO
ASSIST THIS COMMISSION IN WHATEVER MANNER POSSIBLE. -

 
 

AINS and JV rug Use
Testimony of Congressman Rill Green @

Refore the

Presidential Commission Ip
on the &

Numan Immunodeficiency Virus Fnidemic

Necember 17, 1987 pe

I represent a substantial portion of the New York City Rorough of
Manhattan where the AINS epidemic has created a public health crisis of
qreat proportions. Furthermore, drug use and the related dangers of the
spread of AIDS is an especially severe problem in sections of the | ower

Fast Side, which is part of my district.

It fs estimated that in NYC alone there are 500.900 people infected
with the AIDS virus, and that by 199] more than 40,000 people in the city
will have developed ATNS. Some qroups involved with the epidemic consider
these statistics canservative. According to the most recent Health and
Human Services Department Hpdate on ATNS, studies show that in the NYC area
the rate of HIV infection among intravenous drug abusers is ranging from
50% to 65%,

Such statistics are hoth tragic and frightening. With these facts in
mind, it is imperative that we remove any barrters which prevent addicts
from receiving treatment. Ane step would be to improve the availability of

methadone for addicts.

As you know, methadone is a synthetic opfiate which is widely used to
suppress an addict's craving for heroin, Methadone maintenance has heen
studied for over 22 years, and has heen consistently documented as a safe
and effective treatment for narcotic addiction. The Federal Food and Druq
Administration requlates the use of methadone. Currently, the FOA requires
a minimum staffing ratio of 1 counselor to 50 patients in methadone druq
treatment clinics.

 

 
 

 

linfortunately, the current levels of finding for methadone clinice

mabe that requirement a severely limiting factor in terms of nimbers of

patients that can he accommodated,

While | appreciate the importance of counseling in the treatment of
druq addicts, I feel strongly that we must treat as many addicts as
possible and as quickly as possible, especially in light of the AINS
epidemic, This means providing maximum flexibility in service delivery. In
NYC we must address the sad reality that the number of addicts who want
treatment but who cannot get it is mounting. The methadone clinics in New
Yor’ City have lengthly waiting lists and often must turn away addicts whn
want to enter a methadone maintenance program. According tn: statistics
published hy the National Institute on Drug Abuse, in New York City there
are more than 2,500 individuals currently on waiting lists for drug

treatment ,

i
od

Recently | wrote tn the Food and Nrug Administration expressing my
support for new rules which they have proposed cancerning staffing
requirements for methadone clinics, The FAA's new regulations would ease
the requirement that t counselor-he available for every 51. patients
(Federal Register, Vol, 42, No, 191, Actoher ?, 1987), 1 support this
change because it will allow existing clinics to he ahle to serve more TV
drug users who seek treatment. If that relaxation is not enough, and a
choice must he made hetween letting all addicts who are seeking treatment
into a clinic to receive methadone without a counselor or letting mnst

lanquish on the street without any help at all, I say Jet them in.

This view is shared hy Nr. Robert G. Newman, president of Reth Israel
Medical Center in NYC which operates 23 methadone clinics throughout the
city. After having visited Reth Israel’ Gouverneur methadone maintenance

Clinic this past October, 1 am more convinced than ever that we need to

 

open up the clinics to all who are seeking treatment. In fact, T'agree with
the position that Reth tsrael Medical Center has taken: In no way should
the unavailability of counseling and rehabtlitation services result fn
eliqihle addicts heing denied admission to methadone treatment. Tt has heen
estimated that with fewer restrictions on methadone treatment, Reth Israel

could serve at least 2,000 more addicts.

 
 

 

In addition to this, | should also Vike to state my strong support for
community outreach proqrams which encourage the use of sodium hypochlorite
(5.28% solution, household bleach) as a disinfectant for needles and
syringes of TV druq users. Sharing needles is the second most common means
nf the AIDS virus transmission. 1 strongly helieve that every effort must
he made to teach addicts that cleaning needles can help them avoid AIDS.
Several important studies have heen conducted which conclude that in terms
of AIDS education, IV druq users are reachable. Findings indicate that IV
drug users who may not be interested in treatment are interested in
avoiding AINS (1). Therefore, TV druq users are reachable if prevention
methods and education are qiven in a non-judgemental fashion and can he

realistically incorporated into their lives.

Certainty all of us here oppose the use of dangerous drugs, but none
of us can afford to deny the realities of this epidemic. AINS is a medical
issue, and should not he treated as a political or moral issue.

Fducational efforts, such as teaching addicts the henefits of cleaning
needles with bleach at each use, must he targeted, direct, and widespread.
| encourage the media in this nation to include in radio and tv messages
about AIDS clear advice on cleaning needles. We have provided words and
pictorials on condoms. Why not provide the same on clean needles? The
message could say, “Think twice about promiscuous behavior, but if you have
sex, use acondom, Please don't use drugs, but if you do inject yourself,

first clean the needle with househoald bleach."

1. See Dr. John ¥. Watters, Phift., “Preventing Human Immunodeficiency Virus
Contaqion Amang Intravenous Drug Users: The Impact of Street -Rased
fducation an Rish-Reohavior ." Urhan Health Study, 1779 Haight Street, San
Trancisen, CA. QATI7, June, 1987: and Non C. Nes dJarlais (New York State
Division of Substance Abuse Services) and Samuel R. Friedman (Narcotic and
Nruq Research, Iac.), “AIDS Among Intravenous Drug Users: Current Research
in Fpidemioloqy, Natural History and Prevention Strategies," prepared for
the Committee on a National Strateay for AIDS, Institute of Medicine,

National Academy of Sciences.

 

 
 

 

‘ a
~ oe 1 . Mi a ,

It is current ly estimated that ‘any of the cases of children’ with AIDS.

aon

have heen ase sn fated: with: transmission from an infected parent. Tri “almost:
all of these cases, the nantes mothers either used drugs intravenously or
had heterosexual TV drug: using partners, Obviously we have an obligation
in this society to prevent that trend from continuing. We must provide
targeted education toa the groups of wemen"who are at high risk for heing
infected hy the AINS Virus-- in particular, female intravenous drug
abusers, the female sexual partners of [V drug users, and prostitutes.
Again, education on the effectiveness of bleach in cleaning needles mist he

4

encouraqed,

AINS cannot’ be cured currently, hut it can he prevented. This must he
our tireless message, | aqree with: Surqedn. General Koop when he says that,

“With AINS, the first respanse must always be prevention."

r

. .
. wiry pe Sy . ett eg 1 ’ 4 :
~ Pe ate woe 7 ro

I.

 

 
 

 
    

UNITED STATES CONFERENCE OF MAYORS

1620 EYE STREET, NORTHWEST
WASHINGTON. DC 20006 *: -
_ TELEPHONE (202) 293-7330

:

REMARKS ;

OF

THE HONORABLE EDWARD I. KOCH

bry

MAYOR
CITY OF NEW YORK 4

PRESENTED TO THE

PRESIDENTIAL COMMISSION ON THE
HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

DECEMBER 17, 1987
WASHINGTON, DC

 

 
 

I appreciate this opportunity to appear before the |
Presidential Commission on the Human Immunodeficiency Virus
Epidemic, I am here representing the United States Conference

of Mayors, as well as the City of New York.

As a member of the Conference of Mayors’ Task Force on
AIDS, I co-sponsored, elong with Mayors Diane Feinstein of San
Francisco; Ray Flynn of Boston; Marion Barry o£ Washington,
D.C.; and Ted Mann of Newton, Massachusetts, a comprehensive
AIDS Resolution that was adopted unanimously by all mayors
attending our Annual Conference in Nashville this past June. I

would like to submit this resolution for your record,

In October of this year, ae Municipal Conference on AIDS
in New York City brought together, for the first time, both
mayors and county officials to discuss in greater depth the
issues surrounding AIDS that are of such vital importance to
those of us at the local level. I would also like to submit
the resolutions adopted at this conference for the record.
These resolutions, slong with the Resolution adopted by the
Conference of Mayors in Nashville, represent a nationwide
network of local officials who are committed to working

together against the massive problems associated with AIDS.

AIDS is a national problem, affecting the lives of people
in all 50 states, here in the District of Columbia, and in
Puerto Rico and other U.S. Territories. Not only the lives of

those who are actually diagnosed, but their friends, their

>

 

 
 

parents, children and families, employers, and the health cere
system that. provides. for. them throughout the course of their
lives. AIDS is.e,disease that affects us all.
aut

What began as 8 problem in our larger, coastal cities --
my own City of New York, in San: Francisco, and in Los Angeles
-- has now spread to yirtually, all cities in the United
Btates. AIDS now affects many aspects of local government,
including our health, educational, housing, and social service
Systems. We must. work. together, to stem the further spread of

this disease and, care for. those already diagnosed.

4} This, Commission's Preliminary Report correctly identified
IV drug abuse as one of four critical areas of. its further
work. I believe. the New: York, City experience leaves no doubt
but that IV drug abuse is:the most critical area for vigorous
action to stop the further spread of: HIV infection among
addicts, women, children, and minorities. Of all the
recommendations that you will make, those eimed at breaking the
tragic and deadly, connection between IV substance abuse and

AIDS will be among the most far-reaching.

The future of AIDS lies, toa great extent, in combatting
Iv drug use. Last week, New York City Commissioner of Health
Dr. Stephen C.. Joseph introduced. the IV-AIDS problem in -New
York City. Of the more than 12,000 total cases of CDC-defined
AIDS reported so far in: New York City, 35. percent involved IV
Grug users. More than half of all AIDS-related deaths in New

-~2-

 

 

 
 

 

York City have been among IV drug users. Over 80 percent of
the women with AIDS were IV drug ‘users or their sex partners.
Up to 60 percent of the estimated 200,000 IV heroin addicts 1A
New York City are estimated to be currently HIV-infected.

-Most of the 250 children with AIDS have had an iv drug
user for one or both parents. Perhaps the most heartbreaking
of all tragedies associated with AIDS is its effect upon
children: it steals their parents, and robs them of their own
futures. Three-quarters of the children afflicted with AIDS in
New York City have died, most by the age of. three.

IV drug use is concentrated among the poor. Half of New
York City's IV drug users are bleck, 30 percent are Hispanic;
8s 8 result, AIDS is having a disproportionate impact on the
City's. minorities. Thirty percent of the City's AIDS cases aré
among blacks; 24 percent are among Hispanics. Blacks and
Hispanics represent 86 percent of male IV drug users with AIDS,
91 percent of mothers of children with AIDS, and 34 percent of
the men with AIDS whose risk is sex with other men. /

The majority of IV drug users in New York City are male.
heterosexuals whose sexual partners ere generally non-drug
using women in their peak child-bearing years, some of whom do
not know of their partners‘ IV @rug use. These factors
contribute to making the HIV-infected Iv drug user the main

source of infection to other addicts, women, and children,

 

 
 

 

The incidence of AIDS in New York City is unlikely to
Gecline in the near future. By the end of 1991, the Health
Department projects that over 60,000 people will have developed
full-blown AIDS in New York City; 40,000 will have died. If
our estimates included the growing numbers of addicts who are
sick and dying from tuberculosis and other diseases related to
liIv-infection but not officially Classified as AIDS, estimates
for AIDS among addicts would be as much as 150 percent higher.
The Public Health Service projects 270,000 cases across the
country by 1991 as AIDS spreads out across the country from

current areas of high prevalence, with 179,000 deaths.

.Behiné those numbers is.a vast store of human suffering.
In the next few years, AIDS will continue to ravage the poorest .
of New York City’s neighborhoods, and the most vulnerable of
our City's families. The men, women, and children who will be
most affected by AIDS will have the least in the way of social
support systems, will be desperately poor, will most likely be
amember of a disintegrating family, and, in the case of .
children, will often already be struggling under the burden of
a mother who is a @rug eddict or the partner of a drug addict

-— themselves often second- or third-generation addicts.

Our course is clear: we must launch a national program
to stop HIV trensmission among IV Grug users and from IV drug
users to their sex partners and unborn children.

Central to our efforts is frank, explicit, culturally-

w 4 «=

 

 
 

~_e

\ | -
relevant education about AIDS and its prevention. The. problems

of narcotic addiction, however, make it difficult to control
the spread of infection in drug abusers through traditional
means. We lack the gay community's risk reduction and

community responsibility models that have been so successful.

Zo reach IV drug users, AIDS prevention efforts must be
inked to drug treatment programs. \

In New York State, drug treatment programs are the
State's responsibility. Unfortunately, in New York City, the
current State-funded drug sbuse system eccommodates only 10 to
15 percent of those patients who require such service. There
are presently only 225 inpatient drug detoxification beds in
the City, and waiting periods for admission range from weeks to
months. There are only 30,000 methadone maintenance slots for
the 200,000 heroin abusers who live in the City. For those who
require long-term residential treatment efter detoxification,
there are currently only 3,800 such beds. These programs
operate at 110 percent capacity and as many as 1,000 patients

are on waiting lists of up to six months.

Thousands of heroin addicts remain outside of the
treatment network. The more who are denied treatment, the more
who will become HIV-infected and infectious to others:
according to the New York State Department of Substance Abuse
Services, 8 percent of seronegative IV drug abusers become HIV

antibody positive each year. In comparison, the rate of sero-

- 8 -

 

 
 

 

es

conversion among -gay men is now an estimated ] percent per
year. Dr. Joseph has long advocated a clean needle exchange
study to the State Health Commissioner; while we must explore
this and every‘other option, the most important step must be

rapid, large-scale increases in substance abuse treatment slots.

Every addict who seeks drug treatment should receive it.
To increase the number of treatment slots available for State

funding, we have taken the following steps in New York City: |

First, to provide space for many more patients in- 7
State-run drug trestment programs, I offered 10 City-owned
buildings to the Stete Division of Substance Abuse Services.
These buildings were formally transferred to the State by
action of the Board of Estimate on September 17; the State Soro

must now provide funding to rehabilitate the buildings.

Second, in a letter that I recently sent to Governor |

Mario Cuomo, I proposed extending the hours in 10 existing drug
treatment clinics in facilities of the Health ena Hospitals
Corporation (HHC), the municipal hospital system. This will
double the number of clients served, increasing the number by
approximately 1,500. In the same letter, I also proposed
establishing evening hours in 11 Health Department District
Health Centers to Bliow private methadone maintenance providers
to give treatment. The programs would operate in “off-hours”

at these Health Centers, located in many of the City's high

drug-using areas. Up to 1,650 slots could be added.

-6-

 
 

 

In addition, in my letter I reaffirmed to Governor Cuomo

the City's commitment to continue identifying City-owned

buildings to convert to Grug-treatment programs.

Finally, the City’s Correction Department, in cooperation
with the State Division of Substance Abuse Services, has almost
300 inmates daily receiving methadone dispensed by medical
staff. To continue their treatment after release, additional

programs must be available to these people in the community.

These are important and direct ways to begin phasing in
more drug treatment immedistely in New York City. To maximize
these efforts, increases in federal funding must allow the
State to fund more slots (a sizable portion of which would be
eligible for Medicaid reimbursement), and federal waivers must

reduce the ratio of drug counselors to clients.

While substance abuse treatment has been a State
responsibility since 1977, New York City will not shirk its
duty to address the full range of needs of those sick from AIDS
or AIDS-related iliness, whether or not they are IV drug
users. In Fiscal 1988, AIDS spending for treatment, testing,
eounselasy, eduveliuu, end vlhes prvygrems will be $369 million,
including $100 million in City funds. This is up from $278
Million, including $74 million in City tax levy, in Fiscal
1987. In 1989, we project increasing need for AIDS programs,

and therefore hope for a major rise in AIDS funding for New

-7-

 

 
 

 

York City from federal sources.

We have done more than any other city in the country to
put expanding medical, social service, and public health AIDS
programs in piace. The increasing numbers of AIDS patients
receive AIDS-related medical assessment at HHC facilities, as
well as a full range of inpatient and outpatient medical cere,
and the only major source of institutionalized long-term care
for persons with AIDS in New York City. Over 500 patients
receive City-funded AZT treatment at HHC facilities. This
number is projected to expand to 800 by next fiscal year. The
City has budgeted $6.5 million for this need. New federal
assistance will become available to support the cost of AZT

treatment to medically-indigent patients.

- Seven percent of HHC AIDS patients are children; half of
the City's cases of pediatric AIDS have been treated at HHC
facilities. Many of these children must remain in the hospital
because they are orphaned, abandoned, or lack family support
structures. The stigma of AIDS makes them difficult to place
in foster care. Expanding efforts to recruit more foster -
parents for them include revising the payment schedule. We
have also opened a pediatric AIDS Day Care Project in an area

of the City with a high concentration of children with AIDS.

The City. provides emergency shelter and help with housing
and AIDS-related family and children's services Problems

through the Human Resources Administration. Programs include a

 

 
 

 

pilot AIDS Family Case Manegement Unit, tailoring services to
families where one or more persons have AIDS; & special social
service unit, in all hospitals; and an AIDS Helpline, with |
information on public assistance and home care. We have two
foster care programs for children with AIDS. We provide
housing and home care services to more than 600 people a month
who sre not in need of inpatient cars, almost double the number
served in 1986. The vast majority, 462 as of October, received
cash rent supplements to allow them to remain in the familiar,

comfortable surroundings of their own homes.

We are massively increasing public health education
risk-reduction efforts through the Health Department and Board
of Education. In Fiscal 88, projected spending for New Yotk
City AIDS prevention activities, including education, HIV
antibody testing, end epidemiological research, will be $18.5
million. This includes $7.1 million for public health
education activities that direct education to the general
public, and target special programs to people engaged in
high-risk sex and drug behavior. These programs reach IV drug
users, minorities, gay men, adolescents, heterosexuals, and

inmates in Department of Correction programs. -

We have heard calls for mandatory testing for the HIV
antibody. These are misdirected, because they focus the debate
upon the wrong issue. The issue should not be mandatory versus
voluntery testing; our experience in New York City has shown

conclusively that counseling and testing most effectively help

 
 

people adopt risk-avoiding behavior when they are undergone
with the full consent of the individual involved. The debate |
must focus instead upon ways to increase People’s access to

testing that is voluntary, where the results are confidential.

To address this issue most effectively, the City has
mounted an aggressive, extensive program to increase voluntary,
confidential risk-reduction counseling and HIV antibody
testing. In Fiscal 87, the Health Department’s Bureau of
Laboratories performed almost 109,000 tests, approximately 3
times as many as in Fiscal 86. Increases in funding in Fiscal

88 will allow for over 450 specimens per day to be tested.

Other City agencies, including the Department of Mental —
Health, the Board of Education, and the AIDS Discrimination
Unit of the City Human Rights Commission, have also developed |:
AIDS-related programs. AIDS discrimination is particularly
abhorent; the discrimination in housing, employment, and
sccess to services that has emerged against people with AIDS or
AIDB-releted illness, or who are infected with the AIDS virus,

Or even suspected of being infected, must be prohibited.

Furthermore, as AIDS makes deeper inroads among addicts
and minorities, I am concerned about the temptation on the part
of society at large to turn away from the victims of AIDS whom
it considers to be outside of the mainstream. As the epidemic
strikes communities that are less cohesive and Organized than

the gay community, federal resources must not be withheld out

- 10 -

 

 
 

 

of either covert racism or common -- and wrong -- perceptions,
such as that addicts “cannot be educated.” New York City has
made the commitment not to discriminate based on ethnic
background, sexual preference, or any other personal

circumstance in the delivery of AIDS services.

Providing AIDS-related services has stretched our public
health, sociel service, and medical systems to the breaking
point. On any day, over 1,300 people with AIDS or AIDS-related
illnesses occupy City hospitsl] beds, including some 450 in
municipal hospitals. HHC, historically the "family doctor” for
inner-city residents without health insurance or adequate
coverage for ambulatory care, ceres for upwards of half of the
City’s hospitalized AIDS patients, though it has less than
one-quarter of the beds in the City. With inadequate federal
reimbursement for non-Medicaid-eligible persons, the
unreimbursed care for AIDS patients in New York City is
provided by the City through general tax support. We cannot

continue to shoulder this burden without major changes.

AIDS is a national concern that demands national action.
New York City once accounted for almost half of the country's
AIDS cases; it now has 27 percent as the disease has spread
throughout the nation, and will have only 15 percent in 1991.
We need more action such as Senator Kennedy's Comprehensive
AIDS Research, Information, and Care Act, and Congressman
Rangel’s bill to establish grant programs to prevent HIV

transmission among IV drug ebusers.

- il -

 
 

 

However, Congress, which in the continued absence of firm
direction from the Administration has been our strongest hope
for a national AIDS policy, hes also been the source of some of
our biggest disappointments in its repeated embrace of Senator
Helms* amendments, both actual and proposed, that threaten our
AIDS education and prevention programs. The programs that
Senator Helms would cripple have helped reduce the
seroconversion rate among gay men to 1 percent. I have sent a
letter to every Senator asking them to reject these amendments

in favor of an effective, rational federal response to AIDS.

The federal administration has not responded to our needs
in New York City, nor to the country’s need for vigorous,
effective leadership on the national level. Washington must
pdy more attention to the country’s public health and
scientific experts, and less to those who would shift the
debate to misguided political and moral agendas. If Washington

listened more carefully, it would hear that;

There will be no slowing the spread of AIDS without _
federal assistance to increase access for IV Grug users to drug
treatment programs and public health education programs. There
will be no slowing the spread of AIDS among women and children
without federal assistance for residential and ambulatory drug
treatment programs geared to the needs of women with children,

not just single male addicts. There will be no narrowing the

epidemic's scope without federal support for more public health

- 12 -

 

 

 
 

 

education risk reduction efforts, including more confidential,
voluntary risk reduction counseling and HIV antibody testing.

There will be no slowing the spread of AIDS among IV drug users |
without increased federal support for services to help keep

families together end independent without turning to drugs.

There will be no keeping up with the need for new
treatments without an accelerated federal government review
process for experimental drug testing. In the Fiscal 68
Budget, the City provided for a 10-fold increase in AZT
treatments, with an open-ended ceiling. But AZT is just one
treatment approach; accelerated experimental testing must
explore others. 4 )

pn ,/

Localities will no novd unding to care for AIDS
Medicare patients properly without federal revision of the AIDS
DRG reimbursement methodology to reflect more Closely the
actual cost of treatment.

Finally, there are a number of Medicare issves that need
correction. First, the growing need for the alternative
service of hospice care requires changes in current hospice
reimbursement regulations. The °80/20 rule” requires that no
more than 20 percent of hospice care may be provided in an
institution, and that the remaining 60 percent of Medicare-
reimburseable days be spent outside an institutional setting.

This too narrowly restricts the range of care that can be

provided under hospice regulations for AIDS patients, who spend

 

 

 
 

 

@ much greater proportion of their treatment time receiving
institutional care than the 20 percent Bllowed under hospice | 7
reimbursement. Substance abusers, especially, do not have :
family or community support services, and must receive

institutional care. Changes to these reimbursement reguiations _

would redirect money otherwise spent on inpatient hospital care.

Second, and last, we must see enactment of legislation
that exempts people with AIDS from the two-year waiting period
for Medicare eligibility. People with AIDS are immediately
eligible for Social Security Disability Insurance payments, and
meet the requirement of disability for Medicare eligibility. A
second Medicare requirement, however, imposes a 24-month
waiting period from the time of declaration of disability until
the time of coverage. At least half of all people with AIDS
die within this two-year period. The federal government
currently exempts persons suffering from end-stage renal
disease from the 24-month waiting period; legislation must

make a similar exemption for people with AIDS.

As you prepare your recommendations, I urge you to keep
these needs in mind. I offer them on behalf of everyone
throughout this country who has fallen before the relentless
onslaughts of AIDS and IV drug abuse. There must be no
mistaking this: the real fight is against these dual
scourges. With your vigorous support, may we be successful.

- End -

- 14 -

 
 
   

Department of Justice

 

 

 

STATEMENT
OF
J. MICHAEL QUINLAN
DIRECTOR, FEDERAL BUREAU OF PRISONS

BEFORE THE

PRESIDENT’S COMMISSION ON THE
HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

CONCERNING

IMPACT OF AIDS ON THE CRIMINAL JUSTICE SYSTEM

DECEMBER 17, 1987

 

 
 

 

Mr. Chairman and Members of the President's Commission on the

Human Immunodeficiency Virus Epidemic:

Thank you for the opportunity to testify before this committee
on the impact of IV drug abuse and HIV infections on the
criminal justice system. The topics I will address are: the
prevalence of HIV infections among inmates confined in the
Federal Bureau of Prisons, the Bureau's AIDS policy, and IV drug

abuse within the prison system.

THE PREVALENCE OF HIV INFECTION

Following President Reagan's recommendation to test Federal
inmates for the occurrence of HIV infection, Attorney General
Meese directed the Bureau of Prisons to develop an HIV testing
program to address two major unknowns: the prevalence of HIV
infection in Federal prisoners and the risks of acquiring the

HIV infection in our prison environment.

On June 15, 1987, the Bureau of Prisons began a pilot program to
test for HIV infection in two large groups of inmates: all newly
sentenced prisoners, and all inmates within sixty days of
release. On September 30, 1987 the pilot program was

concluded. During that program we tested 13,422 inmates.

The group of newly committed inmates will be retested in three
months, in six months, and every six months thereafter until

their release. Results from the retesting will give us

 

 
 

 

information about the risk of acquiring the infection during

confinement. Prior to this study the Bureau had only been
testing inmates displaying signs or symptoms of the HIV

infection.

Recent evidence suggests that there may be as much as a 14 month
delay between the time an individual becomes infected with the
HIV virus and the time when he/she first tests positive for the
HIV antibody. Therefore an individual may become infected with
the HIV virus as much as 14 months prior to his confinement and
Still test negative as a newly committed prisoner. So, even ;
with this frequent testing, we will not be able to determine,

absolutely, whether an inmate acquired AIDS in prison.

When an inmate has tested positive for the AIDS virus, he is
advised of the result and counselled about proper health
practices and warned of any action that might endanger others.

A health care practitioner, often a doctor, interviews the
inmate and obtains a short case history. The interview attempts
to establish the behavior that led to the infection and where it
occurred. We currently have this follow-up information on 285
inmates. Six inmates have said that their risk-taking behavior
took place during their confinement within the Bureau of
Prisons. In all six cases, the inmates said they were both
homosexuals and intravenous drug users. This does not

necessarily mean that they contracted AIDS while incarcerated,

 
 

 

only that they engaged in high risk activity. The remaining 279
inmates have claimed that their risk-taking behavior occurred

prior to incarceration.

During this study period, we have tried to ascertain the
proportion of our population that, prior to their incarceration,
engaged in behavior that put them at risk for the HIV

infection. At the time a blood sample is drawn for the HIV
antibody test, the inmate is asked to identify which "at risk"
behaviors he has engaged in. The results show that most inmates
(86 percent) claimed not to have engaged in behavior that would
predispose them to the infection; 11.3 percent have admitted to
intravenous drug use and 1.2 percent to homosexual behavior.
Other possibilities such as transfusions or heterosexual contact

with an HIV infected partner amounted to less than one percent.

Based on the initial and follow-up interviews, we also have a
profile of the risky behavior among those prisoners who have
tested positive for the HIV antibody, some of whom are at an
intermediate or advanced stage of the disease. As you are
aware, the dominant risk factor in this country is homosexual
behavior followed by intravenous drug use. [In contrast, HIV
infected prisoners are most likely to have used drugs
intravenously (75 percent). The second most likely behavior is
homosexuality (14 percent). Of the remaining HIV infected
inmates, risky behavior was distributed between heterosexual

contact with an infected partner and those infected through

 
 

 

Jlood transfusions. About five percent did not admit to or were

unaware of any activity that would have exposed them to

infection.

AS a result of the information gained during the testing program
we have decided to modify the program. In addition to testing
all releasees, we are testing the following groups of Federal
inmates: 1) those who exhibit any Clinical indications of the
virus; 2) those who request to be tested; 3) those who are going
to be involved in community activities; and 4) those who have
exhibited predatory and promiscuous behavior. Those in the
latter category who cere poeteive for the AIDS virus will be
separated from the genera) inmate population. In addition to
these categories, a ten percent sample of incoming, sentenced
inmates are being tested and tracked at three, six, twelve and
eighteen month intervals. y using this smaller sample of:
incoming inmates, we will be\able to continue to track the
transmission of AIDS within Federal institutions in a more cost

\ \

effective manner. \\

‘\
Let me briefly discuss the results of\ the HIV testing to date.
We have tested 10,790 new commitment \ 74235 pre-releases,
2,295 volunteers and 953 clinically indigated inmates. Among
new commitments, 266 or 2.46 percent have tested positive for
the HIV antibody. Of the pre-releases, 157 or 2.17 percent have
tested positive. By contrast, in this same time frame, 3.26

percent of the volunteers and 11.64 percent of the clinically

indicated population have tested positive. To total all

 
 

categories we have tested 21,273 inmates with a cumulative

percent positive of 2.86.

THE TREATMENT OF HIV INFECTED INMATES

The Bureau of Prisons has adopted the classification system
developed by the Centers for Disease Control for defining
different stages of the HIV disease process. We monitor all
inmates who have been identified as being at any stage of the
disease and attempt to insure their anonymity. We can classify
three stages of the disease: (1) the first stage consists of
those who test positive for the antibody but have no symptoms;
(2) the intermediate stage includes those inmates with symptoms
less severe, but often requiring intermittent hospitalization;

and (3) end-stage AIDS is the most advanced form of the disease.

Out of a total inmate population of 44,000, we currently have 43
inmates with end-stage AIDS. It is our policy to house these
inmates at one of our medical centers where they can be closely
monitored and treated. Patients at an intermediate stage of the
disease and who require medical attention are also in one of our
hospitals for treatment until their clinical condition

improves. Inmates who have milder symptoms are treated at their

local institutions and remain in the general population.

/

/
/

 

 

 
 

 

Inmates who have tested positive for the HIV antibody but have
no disease symptoms are continued in the general prison environ-
ment; however, only medical personnel and other key personnel
are made aware of positive results on a "need to know" basis.
Inmates who are going to participate in community activities
will be required to notify their spouse of positive results.

Our AIDS policy is based on information from the Centers for
Disease Control that has indicated there is no evidence of

transmission of the disease by casual contact.

Mr. Chairman, we believe that education is the Single most
effective tool for containing the Spread of the AIDS disease.
We plan to increase our efforts in education and training for
both staff and inmates. We believe our training program jis
valuable for two reasons. Education is an important step in
containing the disease, and, secondly, the training alleviates
inmate and staff anxieties about the possibility of infection
from casual contact with infected prisoners. The Bureau
mandates that all staff and inmates view an AIDS training film.
The film stresses basic information about AIDS and emphasizes
ways that the disease is transmitted. We are actively exploring
new ideas for use in an expanded training program through the
National Institute of Justice and other sources. \

|
We are currently reassessing the issue of staff and inmate |
safety in view of the consequences of infection from AIDS.
Those inmates who are infected but are asymptomatic present the

=

 

 
 

 

most troublesome problem. We are especially concerned about the

inmate who is infected and whose behavior imposes a risk to
other inmates and staff. Infected inmates who are sexually
active homosexuals or intravenous drug users may require
separation from the regular inmate population. On those
occasions where staff must use force to subdue a violent inmate,

extra precautions are taken to prevent accidental infection.

DRUG ABUSE AND AIDS

Because of the fact that Federal inmates are most likely to
contract the AIDS virus by intravenous drug use, our policy
regarding the detection and prevention of drug use within prison
has taken on additional significance. We conduct random drug
tests on suspected users, as well as on a group of randomly
selected inmates. The tests detect barbiturates, cocaine,
opiates, amphetamines, THC, and other drugs. We also test all
inmates who return from community furloughs. We conducted
45,751 tests in 1985, 52,733 tests in 1986 and 61,156 tests in
1987. The percentage of inmates testing positive for drug use
in these years was 7.43%, 4.45% and 3.7%, respectively. Among
those who tested positive in the fiscal year 1987, 56.6 percent
were for THC (marijuana), 15.8 percent were for cocaine, 16.9
percent were for opiates, and 18.8 percent were for
amphetamines, barbiturates and other drugs. Disciplinary
action, of course, may be taken against those who test positive

for drug use.

 
 

 

The Bureau of Prisons' efforts at curbing the illicit use of
drugs within prison has shown significant progress in the last

_ two years, as can be seen from these testing figures. Based on
the drug testing results, it is difficult to surmise the extent
of intravenous drug abuse. Although we know a small fraction of
our inmates sometimes use opiates and other potentially injected
drugs, we do not know the exact method by which they take these
drugs. We believe it is difficult for most intravenous users to
continuously evade both the drug testing and the random searches
of their living areas for drug paraphernalia and other
contraband. While the surveillance program monitors the entire
population, chances are that some inmates may not be tested.
This again emphasizes the importance of educating inmates about

the extreme dangers of acquiring an HIV infection.

AIDS TRENDS AND COSTS

Based on our current AIDS testing procedures, the testing alone

will cost $100,000 a year. The cost of treatment for AIDS
patients with opportunistic infections such as forms of cancer

and pneumonia ranges from $50,000 to $120,000 per case.

We are providing the experimental drug AZT for those inmates for
whom it is medically indicated and those who can tolerate its
side effects. The cost of this treatment aloné is $8,250 per

patient per year. Although the current caseload of end-stage

 
 

 

AIDS patients is low (43 inmates), it is Likely we will see, an

increase in this caseload over time. Complicating this
projection, Mr. Chairman, is the potential impact of the 1986
Anti-Drug Abuse Act and the impact of sentencing guidelines
implemented in November of this year. The legislation will
increase our drug offender population and the guidelines may
increase the number of prisoners and the length of their
incarceration. Since the great majority of our HIV cases come
from intravenous drug users, the effect of the drug legislation

will probably increase our AIDS caseload.

As I am sure you appreciate, Mr. Chairman, the AIDS epidemic has
presented unique problems to the management of the prison
population. Because of the backgrounds of sentenced offenders, '
we face an increased likelihood of housing an HIV infected
prisoner. This problem has been complicated by the dramatic
rise in the Bureau of Prisons’ population over the last several
years. We have tried to anticipate this challenge by a
comprehensive program that monitors the incidence of the
infection and its spread. We are also offering education and
counselling programs that we think are essential in alleviating
unwarranted fears and which accurately describe appropriate |
precautions to prevent infection. We are also constantly
reassessing our policy in light of new information about the
disease and its prevalence in our population.

That concludes my formal statement, Mr. Chairman. I would be

pleased to answer any questions you or your colleagues may have.

4

 

 
 

U.S. Department of Justice

National Institute of Justice

 

 

Office of the Director

Washington, DC. 20531

WRITTEN STATEMENT

OF

JAMES K. STEWART
DIRECTOR
NATIONAL INSTITUTE OF JUSTICE

BEFORE THE

PRESIDENT’S COMMISSION ON AIDS

ON

DECEMBER 17, 1987

 

 
 

 

Since its first appearance in 1981, AIDS -- Acquired
Immunodeficiency Syndrome -~ has become a major issue for public
officials in all areas of the country and in all sectors of
government. Today there is an enormous amount of uncertainty,
fear, and misinformation about the origins and transmission of
the disease. As a result, public health officials, school,
hospital, police and correctional administrators face a dilemma:
how to develop effective and equitable policies that not only

reflect the most current medical information available but also

address the unique responsibilities of their professions.

Since 1985, the National Institute of Justice (NIJ) has
worked with the Centers for Disease Control and other public
health officials to provide important authoritative medical
information about AIDS to criminal justice professionals. The
problem of AIDS is a formidable challenge for criminal justice
agencies -- in part because of the high percentage of IV drug
abusers in offender populations. To meet the needs for .
information and guidance, NIJ has conducted several studies to
assist correctional and law enforcement administrators in dealing
with the disease. Two reports on AIDS as it relates to
corrections and law enforcement agency procedures have been
published. More than 18,000 copies of the reports have been
disseminated. The first report, AIDS in Correctional Facilities:
Issues and Options -- and its 1986 update -- review the incidence

of AIDS in the nation’s prisons and jails, the issues it poses

for correctional staff, and the ways in which correctional |

 

 
 

 

‘ 2

systems are responding. Another report, AIDS and the Law

 

Enforcement Officer: Concerns and Policy Responses, gives law
enforcement professionals the medical facts on AIDS and then
applies this information to the day-to-day realities of law
enforcement operations. Drawing on law enforcement experience
with Hepatitis-B and other communicable diseases, it provides
guidance on appropriate precautions so law enforcement personnel
can perform their duties as safely as possible in light of this

health problen. -

NIJ is. supporting other programs to help criminal justice
professionals cope with the AIDS crisis. one major new activity
is the creation of the NIJ .AIDS Clearinghouse, developed at the.
request of Attorney General Edwin Meese III. The Clearinghouse
offers criminal justice professionals current information on AIDS
and its impact on the justice system. As part of the Institute’s
National Criminal Justice Reference Service (NCJRS), the AIDS
Clearinghouse distributes current information on AIDS developed
by NIJ, the Centers for Disease Control, and other agencies of
the U.S. Public Health Service and the Department of Justice. In |
addition, an information specialist is available to answer
questions, make referrals, and Suggest publications pertaining to

AIDS as it relates to criminal justice.

AS part of the Clearinghouse effort, NIJ has developed a new
publications series, AIDS Bulletins, which present short, non-

 

 
 

 

3

technical summaries of important information on AIDS and related
criminal justice issues. Given the importance of a sound
understanding of the medical facts about AIDS, the first AIDS
Bulletin provides basic medical facts about the disease and its
cause, transmission, and incidence in the U.S. Upcoming
Bulletins will cover such subjects as transmission of the virus
through exposure to blood, infection control measures, training,
and education, AIDS and the IV drug user, legal and liability
issues related to AIDS, and the technical requirements of

testing.

In addition to the NIJ AIDS publications already provided to

Commission members, the following comments address issues

identified by Commission staff as being of particular interest.

Training and Education

Because prospects for an AIDS vaccine or cure are less than
promising for the immediate future, education and training must
continue to be the cornerstone of the response to AIDS in
correctional facilities and law enforcement agencies, as in

society at large.

Effective staff training is the foundation of appropriate
law enforcement policies regarding AIDS. AIDS is a disease of

high-risk behavior not high-risk groups. Far too many people

 

 
 

 

4 '
take the potentially dangerous position that the AIDS virus may
be transmitted by contact with members of “high-risk groups.” In
fact, everyone must be concerned with a few well-defined types of
activities -- specifically unprotected sexual intercourse,
sharing of needles, and other activities where blood, semen, or

vaginal secretions are exchanged. NIJ recommended that the

following be part of AIDS training programs.

Involve staff in the development of training programs
and training materials. This lends credibility to the
program and allows it to respond to specific issues

raised by the staff.

° Training should be timely. Ideally, it should begin
before staff begin to raise serious concerns about

AIDS.

° Training should be presented frequently. One-time
segments during recruit training are insufficient.
Regular in-service training can present new information
promptly and prevent misinformation from taking hold.

Printed materials should be continuously available.

° Live training (lectures, seminars, discussions) is the
most effective format if trainers are highly
knowledgeable. It is critical that staff have ample

 
 

5

> opportunity to ask: questions and receive answers from

+ experts in the field. Videotapes can be effective but -

 

they should be followed by live quest ion-and-answer

periods.

Training should be keyed to specific law enforcement
issues and situations. It is not enough to distribute
generic informational materials. Training topics
should include arrest procedures, searches, CPR, first
aid, evidence handling, transportation of prisoners,
crime scene processing, disposal of contaminated

materials, lockup supervision, and body removal

procedures.

Training should avoid the extremes of alarmism and
complacency. An alarmist tone might foster
misinformation and undue fear, while a complacent tone
might not provide sufficiently strong recommendations
regarding the care and caution all staff should

practice in all situations.

Recognize the role of law enforcement officers as AIDS
educators in the community. Because officers
frequently deal with intravenous drug users,

prostitutes and others at high risk of being infected

 

 
 

 

6

with HIV;,. they may have a unique’ opportunity to provide

?
ar 2, aa 1 a t pra’

frank, practical educational messages on the disease.

” Ob =
wy BO: .?

~ vo

The following table shows subjects that should be covered in

training and education programs for both. law.enforcement and

correctional personnel:

?
~ ° > 7
ae .
See . ’ a
aly yf Net a us fea
1
e- t
.
fet 7 aay » ‘ 3 ' art ‘. Fate wen >} 7° ase 7 ‘ , rc ‘ : . ;
gta i hoth yaa, fis) . Php a Eide) a kf ee ; re Mts . ~ fa ° -
Tt
‘ rf
s ‘
»

 
 

 

SUBJECTS TO BE COVERED iN TRAINING
AND EDUCATION PROGRAMS ON AIDS

Means of transmission of HIV infection
Methods of preventing transmission
CPR/First Aid procedures

Search procedures

Arrest procedures

Transportation of prisoners

Crime scene processing

Evidence handling/laboratory procedures
Disposal of contaminated tiaterials
Lockup issues

Body removal procedures

Legal/liability issues (e.g, obligation to pe®form
duty)

HIV Antibody testing procedures

 
 

 

8

Training and education programs in correctional systems are
widespread. Many correctional administrators strongly believe
that education and training are not options but absolute
requirements, both for staff and inmates. Staff are concerned
about the possibility of contracting AIDS from aggressive inmates
who may bite them, spit in their faces, throw urine or feces on
then, or jab them with sharp instruments. Such concerns have led
staff to refuse work assignments. Education and training
programs may be able to counteract misinformation and rumors by

carefully marshaling accurate information.

The key elements of effective correctional staff training
are similar to those in law enforcement training, i.e. timely,
frequent, and “live” training are most effective. The
development of training and education should be guided by the
most current medical knowledge so that the tone and content of

these programs appropriately avoid both complacency and alarmisn.

t

Many of the same principles apply to inmate education on
AIDS as to staff training. Timely, accurate and mandatory
educational programs are necessary. Inmate training typically
stresses avoiding behaviors such as sexual activities and needle-
sharing that may result in transmission of the AIDS virus, and
the responsibilities of all inmates regarding all types of sexual

activity and other potentially dangerous behavior. It is

 
 

 

9 7
important for training to stress the precautionary steps that
everyone should take. Inmate training can be effective in
reducing fears and changing behaviors. Correctional
administrators believe that sexual practices in prison are
changing as a result of educational efforts. It is often
suggested that IV drug abusers are especially difficult to
educate regarding the dangers of AIDS because they are already
engaged in behavior which is dangerous to their health. However,
recent trends among street drug users in New York City suggests
that educational efforts may be resulting in desirable changes in

behavior.

Incidence of AIDS Among Correctional Inmates

The first systematic research on AIDS in prisons and jails
was done in late 1985, and co-sponsored by NIJ and the American
Correctional Association. The AIDS in Correctiona] Facilities
study was based on responses from all 50 state correctional
systems, the Federal Bureau of Prisons, and 33 of the largest
city and county jail systems. The report was updated in 1986,
and current plans call for the report to be updated annually for

the next several years.

Since the publication of the original report, the number of
inmate AIDS cases in correctional institutions has increased,

although at a slower rate than in the U.S. at large.

 

 
 

 

As of October 1, 1986, there had been 1,232 confirmed AIDS

cases among inmates in the 58 responding federal, state, and
local correctional systems. Of these, 784 cases were reported by
31 state and federal correctional systems -- up 72 percent from .
the 455 cases reported as of November 1, 1985, the time of. the
original survey. . The 27 responding city and county jail systems:
reported 448 cases -- up 44 percent from the 311 cases reported

in the original survey 11 months earlier.

Total AIDS cases in all responding correctional systems.
increased from 766° to 1,232 -- or 61 percent: -- in the 11 month |
interval.. This ‘is a large increase in cases, but it is, in fact,.
smaller than the 79 ‘percent national increase from 14,519 cases

as of November 4, 1985 to 26,002 as of October 6, 1986. |

Precautionary Measures and Protective Equipment

Because law enforcement and corrections ‘personnel are
regularly ‘in contact with IV drug users and others who are at.
high risk of being infected and infecting others, they are
concerned that they ‘may be at increased risk of acquiring the |
AIDS virus through job-related incidents with suspects and
offenders. These include assaultive and disruptive behaviors
such as biting and ‘spitting, providing CPR and first aid, body

removal, evidence collection, and evidence handling in crime

 

 

 
 

 

11
laboratories. It is important for agencies to develop and

enforce appropriate written AIDS policies and procedures.

The Centers for Disease Control (CDC) has promulgated
guidelines for prevention of HIV transmission in the workplace.
Many of these are relevant to criminal justice personnel and
ought to be incorporated into agencies’ AIDS policies. At the

heart of these guidelines are the following principles:

° avoid needle sticks and other sharp instrument
injuries;

o wear gloves when contact with blood or body fluids is
likely;

° use disposable shoe coverings if considerable blood

contamination is encountered;

° keep all cuts and open wounds covered with clean

bandages;

° avoid smoking, eating, drinking, nail biting, and all
hand-to-mouth, hand-to-nose, and hand-to-eye actions
while working in areas contaminated with blood or body

fluids;

 

 
 

 

12
° wash hands thoroughly with soap and water after
removing gloves and after any contact with blood or

body fluids;

° clean up any spills of blood or body fluids thoroughly

and promptly, using a 1:9 household bleach dilution;

° clean all possible contaminated surfaces and areas with

a 1:9 household bleach dilution: and

o place all possibly contaminated clothing and other

items in clearly identified impervious Plastic bags.

It is important to note that precautionary measures be
commensurate with the risk involved. Obviously, criminal justice
personnel cannot predict with certainty when they will encounter
blood or body fluids in the course of their duties. In almost
any situation, there may be the potential for such contact.
However, it would be an unnecessary over-reaction to wear gloves
or shoe coverings at all times. Such measures could also
seriously undermine the critical educational message that HIV

infection is not transmitted by casual contact.

Instead, criminal justice personnel should exercise their
professional judgement as to when they believe there is a

reasonable likelihood for contact with blood or body fluids and

 
 

 

13
exercise reasonable care in those situations, just as they do in
addressing the other types of risks.common in their work. For
example, in an emergency situation involving arterial bleeding,
the responding officer should wear gloves. Gloves need not be
worn for routine traffic stops where contact with blood or body

fluids is unlikely.

Consistency is also critical in the implementation of these
precautions. They should be used when there is a reasonable
likelihood of contact with the blood or body fluids of anyone,
regardless of whether they are known or suspected to be infected
with HIV. These procedures will be effective in avoiding many
other infections and diseases, including Hepatitis-B. Asa
general rule, all unprotected contact with blood or body fluids

should be avoided. .

The following chart summarizes actions to be taken for

specific incidents:

Issue/concern _. Educational and action messages
|
Human bites Person who bites usually receives the
victim’s blood; viral transmission
through saliva is highly unlikely. If
bitten by anyone, milk wound to make it

bleed, wash the area thoroughly with

 

 
 

Spitting

Urine/ feces

Cuts/puncture wounds

CPR/first aid

14

Soap and water, and seek medical

attention.

Viral transmission through saliva is
highly unlikely. There have been no
documented cases of transmission

associated with saliva.

Virus isolated in only very low
concentrations in urine; not, at all in
feces; no cases of AIDS or AIDS virus
infection associated with either urine

~

or feces.

Use caution in handling sharp objects
and searching areas hidden from view;
needle stick studies show risk of
infection is very low: of 887: health
care workers experiencing needlesticks |
with HIV-contaminateda needles, only 4

(0.5%) became infected.

To eliminate the already minimal risk
associated with CPR, use masks/airways;

avoid blood-to-blood contact by keeping

 

 

 
 

Body removal

Casual contact

Any contact with

blood or body fluids

Contact with

dried blood

 

15

open wounds covered and wearing gloves

when in contact with bleeding wounds.

Observe crime scene rule: Do not touch
anything. Those who must come into
contact with blood or other body fluids

should wear gloves.

No cases of AIDS or AIDS virus infection

attributed to casual contact.

Wear gloves if contact with blood or
body fluids is considered likely. If
contact occurs, wash thoroughly with
soap and water; clean up spills with 1:9

solution of household bleach.

No cases of infection have been traced
to exposure to dried blood. The drying
process itself appears to inactivate the
virus. Despite low risk, however,
caution dictates wearing gloves, a mask,
and protective shoe coverings if
exposure to dried blood particles is
likely (e.g., crime scene

investigation).

 

 
 

 

16

As documented in various NIJ AIDS publications, the risk of
becoming infected with HIV in the course of occupational duties
within a criminal justice agency is low. However, systematic and
consistent use of recommended precautions will minimize such

risks.

HIV_ Antibody Screening and Testing

Significant controversy continues to surround the use of the
HIV antibody test to screen people, as opposed to screening
blood. Primary issues in the debate have been the test’s utility
in predicting the future course of infection, the difficulty of
maintaining the confidentiality of test results, and the
discrimination and other detrimental effects on individuals lives
if results are divulged. Correctional management issues -- in
particular, what to do with seropositives once they are
identified -- must also be carefully weighed in any application

of mass screening programs in prisons or jails.

Probably as a result of some combination of all these
factors, few correctional systems have implemented mass screening
programs. Several correctional departments have also rejected
mass screening on the basis of CDC’s recommendation against
routine screening of the population at large. This seems to

reflect the belief that mass screening is no more “productive or

 

 
 

a7
desirable” in correctional settings than in the larger society.
If and when therapeutic drugs such as AZT and Ribovirin are
approved and become widely available, there may be better reason
to screen inmates. This will be particularly true if such drugs
prove effective in inhibiting the development of illness in

asymptomatic seropositive individuals.

As of November 1987, the following states had implemented
mass screening programs within their correctional facilities:
South Dakota, Colorado, Nevada, Missouri, Idaho, New Hampshire,
Oklahoma, West Virginia, Nebraska, and Alabama. None of the four
jurisdictions that in 1986 collectively accounted for 70 percent
of all inmate AIDS cases Lo New York ‘State, New York City, New
Jersey, and Florida --/ have implemented mass screening programs.
Most systems test when el{nically indicated, in response to
incidents or for blind epidemiological studies. It appears that
screening is more common jin low-incidence systems and in
restricted applications where it is jlikely to identify few
seropositives, and thus pose fewer correctional management

|

problems.

The issue of mass screening for antibody to the AIDS virus |
in correctional institutions has sparked ‘lively debate, involving

the following major questions:

 

 
 

 

18
Why should correctional systems take steps not being

taken in the community at large?

0 What are the policy implications of identifying |

seropositive individuals?

° How would mass screening affect education and
prevention programs?

° Is it possible to develop a reliable and confidential
screening program?

° What are the legal implications of screening?

o What are the costs of mass screening?

° Will mass screening allay or inflame fears?

°

Are there feasible alternatives to screening?

Criminal justice agency policies on HIV antibody testing
should reflect a careful consideration of the above issues.
Policy statements should specify the rationale for the policy
position and the procedures to be used in any testing program.
At a minimun, written policies should address the following key

questions:

 
 

19

o who is to be tested?

what is the purpose of the testing?

° is testing voluntary or mandatory (taking into account
applicable laws)?

7 when and where are tests to be performed?

° what confirmatory tests are to be used?

° who must be notified of the results? and

oO

what are the requirements for pre- and post-test

counselling?

Notification and Confidentiality Issues Regarding Medical Status

of Inmates

Related to the issue of mass screening are questions
regarding the confidentiality of test results. If a mass
screening program is instituted in a correctional setting, it may
be impossible to maintain confidentiality. Moreover,
correctional administrators interviewed by NIJ maintain that,

even if confidentiality could be assured, any individual might be

 

 
 

 

20
rumored to be seropositive, regardless of actual test results.
If actual or inferred test results become known to the
correctional population at large, seropositive inmates may face
intimidation, threats or actual violence from others concerned

about the possible spread of AIDS.

One of the most difficult and sensitive issues regarding
AIDS in corrections is who receives information on the medical
status of inmates with AIDS, ARC or HIV seropositivity.
Decisions regarding who should receive HIV antibody test results
and who should be notified regarding diagnoses of AIDS or ARC may
be dictated by precise legal and policy Standards, such as
requirements for written authorization to release test results or

other medical records.

Some argue that decisions regarding disclosure versus
confidentiality of medical information in cases of AIDS or ARC
should be based solely on legal requirements - that is, no
information should be reported to anyone unless it is required by
law. This position is based on the premise that correctional
Systems should bear no greater responsibility for notification
than do institutions in the community at large. It also seems to
reflect skepticism that such notifications serve any useful or

appropriate purpose.

 
 

 

 

21

Where law or policy allow any discretion, decisions
regarding disclosure versus confidentiality invariably raise the
question of which should take precedence: the inmate’s right to
have medical information kept confidential or the correctional
system’s perceived legal and moral responsibility to protect its
staff and other inmates, as well as the public, from HIV
infection. There are important considerations on both sides of
the argument. On the one hand, it is often argued that
correctional staff have a right to know when they are dealing
with inmates who may be infectious or who have a serious
communicable disease, and that spouses have a right to know if a
person with whom they may have sexual relations is carrying a
sexually transmitted disease. Notification to public health
departments and inmates’ former and/or subsequent correctional
systems may also be considered important to facilitate treatment,
prevention measures, and contact tracing. Such disclosures may
also be designed to reduce or eliminate the correctional system’:.
legal liability should a released or transferred inmate transmit

AIDS to others.

On the other hand, the most compelling reasons for
maintaining confidentiality is that persons known to have AIDS,
ARC, or HIV seropositivity may suffer ostracism, threats and
possibly violent intimidation while in prison, and discrimination
in employment, housing, and insurance availability after they are

discharged.

 

 
 

 

22

 

Housing Policies for Inmates with AIDS, ARC and Asymptomatic HIV
seropositivity

Deciding where to house and treat inmates with AIDS, ARC, or
HIV seropositivity is one of the most critical and difficult
decisions for correctional administrators. of course, medical
considerations are one of the most important factors in this
decision. All jurisdictions place inmates with confirmed
diagnoses of AIDS who are seriously ill ina hospital or
infirmary setting, although the duration of such hospitalization
varies considerably. In addition, preventing the spread of AIDS
within the prison and protecting affected inmates must also be
important considerations. Finally, the costs of care,
availability and location of facilities able to provide
appropriate care, costs of any new construction or renovations
necessary to prepare special units, and staffing of any special
AIDS units (correctional as well as medical) will all affect

correctional decisions on treatment and housing.

Correctional administrators have a number of options
concerning treatment and housing placements for inmates with
AIDS, ARC, or HIV seropositivity. Among those identified in

responses to the NIJ study were the following:

1) maintaining inmates in the general population;

 

 
 

 

2) returning inmates to the general population when their

illnesses are in remission;

3) administratively segregating inmates in a separate unit

or relying on single-cell housing;

4) hospitalization; and

5) case-by-case determination of all housing and treatment

decisions.

Decisions to keep inmates in the general population involve
consideration of measures necessary and appropriate to protect
affected inmates from other inmates and to minimize the risk of
infection being transmitted. CDC guidelines recommend no special
housing arrangement for AIDS or ARC patients except under certain
clearly defined medical circumstances. These circumstances
primarily involve protection of the patient from infection rather
than protecting other people from the patient’s infection. A
number of systems maintain entire AIDS-related categories of
inmates, particularly seropositives, in the general population
without any special programming. Largely due to extensive
educational programs on AIDS, this has reduced concern regarding

transmission of the AIDS virus.

 
 

 

24
Every jurisdiction places inmates with confirmed diagnoses
of AIDS in some hospital or infirmary setting during the periods
when they are seriously ill. The type of medical facilities used
and the duration of hospitalization varies according to the
seriousness of the illness or symptoms and the purpose of a
medical placement - evaluation, treatment, or segregation from

other inmates.

Some correctional systems believe that it is necessary to
Separate inmates with AIDS, ARC and/or HIV seropositivity from
the general correctional population for administrative and
Management (as opposed to medical) reasons. Some systems
segregate all three major AIDS-related inmate categories and
other segregated AIDS and ARC inmates, but no seropositives.
Other non-medical housing options include administrative
assignment to single-cell housing in the general population.
Such decisions represent efforts to prevent transmission of the
infection to other inmates or to protect the affected inmates
from others in the population, or both. 4

Though segregating inmates to prevent the spread of AIDS
within prisons may be effective in controlling HIV transmission
and may help to reduce fear of AIDS within the institution, it -
has certain drawbacks and limitations. First, this policy will
only be effective to the extent that AIDS, ARC, or seropositive

cases are known to correctional administrators. In this light,

\
~~ - ‘ _ 4
’

 

 
 

 

; 25

other approaches, such as education on the means of HIV
transmission, surveillance for those behaviors known to be
associated with transmission, and enforcement of disciplinary

sanctions against those behaviors, may be more effective.

Second, correctional administrators may reduce their
administrative options by adopting a policy of segregation. Once
a category of inmates is separated from the general population,
it may be difficult to reverse that decision and send them back,
as this might cause concern among other inmates and staff.

Still, there are cases of policy being changed without causing
great difficulty. For example, in Michigan an inmate with AIDS
was medically segregated, but then returned to the general
population without incident when the disease went into remission.
Michigan officials emphasize the importance of a concerted and
continuous education program and the cooperation of the

correctional officers’ union in achieving this success.

Finally, development of separate housing for AIDS, ARC, or
seropositive individuals may have considerable impact on
correctional costs. Single-celling, development of’ separate
units, and medical isolation are all expensive, especially if
these placements are use for inmates showing only HIV

seropositivity or ARC.

 

 
 

 

 

26

Because many people are misinformed about AIDS and have
undue fear of contracting the disease, inmates with AIDS, ARC, or
HIV seropositivity may actually be in some danger if left in the
general correctional population, and in such cases, protective
custody may be warranted. However, the decision to segregate
inmates on this basis must rest on careful consideration of the
situation in each institution. An alternative to blanket
segregation may be to provide protective custody to inmates on
request. It is important to reemphasize that with appropriate
educational programs, many correctional systems have successfully
avoided all forms of administrative segregation and have

separated inmates only when medically indicated.

Nature and Extent of Medical Care and Ancilla Services Provided
Se RE cal_tare and Ancillary Services Provided

to Inmates

 

\
Because AIDS is relatively difficult to detect, develops

only after a long -- potentially indefinite -- incubation period,
and is almost invariably fatal, it has presented an unprecedented
Challenge to the medical community, federal, state and municipal
policymakers, and individual citizens. Within the correctional
setting, the challenge of AIDS is, if anything, more severe.
Inmate populations may include a higher than usual proportion of
individuals at risk for developing AIDS. In addition, during the
time the correctional system has jurisdiction over an inmate, the

system has responsibility for the provision and financing of all

 
 

 

27
medical care. Finally, the correctional system has certain other
responsibilities concerning inmate safety and maintenance of
security and order of the institution. When responding to the
challenging problem of AIDS in prison and jails, administrators
must not only deal with the difficult medical issues; they must
also balance medical considerations and medical advice against
complex correctional management factors. Medical guidelines and
correctional considerations may sometimes be at odds. Finally,
decision-making is further complicated by legal and cost

concerns.

Perhaps the highest priority in the correctional response to
AIDS is providing timely and professional medical care to inmates
who become ill with the disease. Because of the painful
uncertainties and psychological stresses caused by these

conditions, support counseling and services are also critical.

Within the correctional institution, the basic medical
issues posed by AIDS are identical to those outside the
institution. Appropriate diagnostic workups (including complete
blood count and other blood work and anergy screens) are
necessary to identify immuno-suppression, ARC and AIDS. There
are also certain tests that may be able to detect early evidence
of opportunistic infections typically seen in AIDS patients
(e.g., the gallium scan for detecting early Pneumocystis Carinii

pneumonia).

 

 
 

 

28

Careful surveillance and regular followup are extremely
important for patients with AIDS, ARC and HIV seropositivity
because serious, life-threatening Symptoms can develop very
quickly. Many correctional agencies have specific protocols for
followup and medical surveillance. The details of these
protocols may vary, but their basic intent is the same: to

facilitate timely medical intervention.

The nature of medical treatment will depend on the inmate’s
health as well as on the medical Capabilities available to the
correctional system. Many inmates with HIV seropositivity or ARC
require only routine monitoring of their health status. However,
inmates with extreme manifestations of AIDS almost invariably
require intensive medical treatment, either within the
correctional system’s medical facilities or in a community

hospital.

Innovative treatments are available for certain of the
opportunistic diseases associated with AIDS. Not only will this
improve the quality of medical care, but it may also reduce the
ultimate costs of care by keeping the inmate healthier for a

longer time.

Because AIDS is an extremely serious psychological as well

as physical problem for those with the disease, counseling and

 
 

 

29

support systems are also considered an important component of
care. There is a growing interest on the part of correctional
mental health staff for the development and implementation of
support groups for inmates with AIDS, ARC and HIV seropositivity.
Promising AIDS support groups have been initiated in a few
correctional facilities. Such groups help to address and ease
the personal difficulties of inmates with HIV infection, and
raise the general level of information and awareness regarding

AIDS among both inmates and staff.

Because of the painful uncertainties involved, counseling is
just as important for HIV seropositives and ARC cases as for
confirmed AIDS cases. Most jurisdictions provide such counseling
to affected inmates. In addition, it is important to counsel
potentially infected and infectious persons regarding the risks
of transmitting the infection and means to prevent transmission.
cpc has published guidelines that may form the basis of such

counseling.

Correctional systems are universally concerned about the
costs of medical care and associated services for inmates with
AIDS. The range of costs varies widely and, in general, medical
care for AIDS patients is extremely expensive, whether provided
in a correctional medical facility, in another public medical
facility, or in a hospital in the community. NIJ survey results

show that correctional systems can plan on spending anywhere from

_ ey —_
“

” a

 

 
 

 

30
$40,000 to over $300,000 yearly for hospitalization and
associated medical costs of caring for each inmate with AIDs. A
number of factors inform decisions on where to place inmates with
AIDS. These include availability and location of necessary
medical care capabilities, numbers of inmates in the system who
require such care, and institutional security and management

?
issues.

To the figures for hospitalization and medical care must be
added costs of ancillary services such as counseling, possible
legal costs, increased insurance costs (unless the system is
self-insured), and funeral costs. Obviously, the total costs of
medical care and associated services for inmates with AIDS could
have serious budget implications for correctional systems.
Recent interviews with correctional administrators indicate that
they are working to ensure quality medical care for all inmates
with AIDS. Increasing concern surrounds the high cost of
providing experimental drugs, in particular AZT, to inmates with
AIDS. As new treatments become available, they will have a

growing impact on correctional health budgets.

Correctional systems should develop as much information as
they can, through epidemiological studies and other means, to
project future numbers of AIDS cases. Such projections will at

least help administrators prepare timely requests for budgets to

 
 

31
cover the costs of medical care, AZT and psycho-social care for

those inmates.

Conclusion

AIDS poses complex and difficult problems for criminal
justice agencies. Because they may be in contact with
intravenous drug users and others who engage in high risk
behaviors, criminal justice professionals are understandably
concerned about becoming infected while carrying out their
duties. None of the decisions are easy, and the only certainty
is that the problems will not disappear. In order to deal
effectively with the AIDS issue, law enforcement agencies must
address it in a forthright manner before fear and misinformation
have a chance to affect service delivery. Regular education and
training that accurately present the facts on AIDS, as well as
precautionary guidelines are absolutely essential. Accurate
medical knowledge is a prerequisite for rational policy

decisions.

It is imperative that every correctional system -- whether
it currently has no cases or 200 cases of AIDS -- develop a
comprehensive set of policies and procedures for managing the
AIDS problem in its institutions. These policies and procedures
must be based on careful consideration of the range of options

available and the strength and weaknesses of each. Toward this

 

 
 

 

32
end, NIJ is currently completing the third survey of correctional
systems for the 1987 Update: AIDS in Correctional Facilities,
which will be available in early 1988. In addition to presenting
basic facts on AIDS itself, including how widespread it is in
both the general and correctional populations, this update will
describe the current range of correctional system practices
related to AIDS. With this knowledge, corrections officials will
be in a stronger position to deal with the problem of AIDS
through public education efforts, treatment, and reasonable and

effective management policies.

Probation and parole officials are also faced with AIDS
issues, including housing and employment discrimination toward
clients with AIDS and issues regarding release of clients’ HIV
status to name a few. NIJ is currently sponsoring a study
designed to examine AIDS issues as they relate to probation and
parole. The report, AIDS: Issues for Probation and Parole will
examine the legal and liability issues which AIDS poses for
community corrections. The report will also explore the various
policy issues and options associated with AIDS in the context of
probation and parole, and is scheduled to be published in early
1988.

NIJ is currently negotiating with the Centers for Disease
Control to conduct a study to determine the prevalence of HIV

infection among new entrants into ten geographically diverse

 

 

 

 
 

a 33
correctional systems. 1,000 samples will be obtained from each
of ten systems during each of two consecutive years, and a
portion of each sample will be anonymously tested for HIV
antibody. The information obtained will serve two important
purposes. First of all, the information will provide each
participating correctional system with two annual estimates of
intake prevalence of infection, useful in coordinating
correctional management plans, AIDS education programs, and
correctional health care cost projections. Secondly, estimates
of the general trends of infection rate can be made, giving a
sense of the migration of the AIDS virus through correctional

populations.

President Reagan has said that the AIDS crisis “calls for
urgency, not panic ... compassion, not blame ... understanding,
not ignorance.” The National Institute of Justice is working to
ensure that criminal justice professionals have the accurate
information they need to understand and deal with the risks

created by AIDS.

Submitted by:
James K. Stewart
Director

National Institute of Justice

 

 
 

 

"Testimony Of Commissioner Thomas A. Coughlin, lll

‘COMMISSIONER PRIMM, | THANK YOU, CHAIRMAN WATKINS AND THE MEMBERS OF THIS
PRESIDENTIAL COMMISSION FOR INVITING ME TO SPEAK BEFORE YOU.

THROUGH FORUMS SUCH AS THIS, | SHARE YOUR HOPE THAT OUR COLLECTIVE
CONCERN, EXPERIENCE, WISDOM AND RESEARCH WILL LEAD US TO THE DISCOVERY OF
A CURE FOR THIS DEADLY VIRUS CALLED AIDS.

MUCH HAS BEEN SAID AND WRITTEN ABOUT THIS DISEASE. BUT MANY PEOPLE REMAIN
UNINFORMED.

TOO MANY PEOPLE CONTINUE TO PUT THEMSELVES AT UNNECESSARY RISK,
UNAWARE THAT THEIR BEHAVIOR MAY LEAD TO THEIR DEATHS. TOO MANY OTHERS SEE
RISKS THAT NEVER DID, AND DON'T NOW, EXIST.

AS OF EARLY THIS MONTH, AIDS HAD STRICKEN 48,139 AMERICANS, KILLING 27,235 OF
THEM. ACROSS THIS NATION, 60 PERCENT OF ALL AMERICANS WHO HAVE CONTRACTED
AIDS HAVE DIED.

AIDS IS A TERRORIST OF INTERNATIONAL PROPORTIONS, THE NUMBER OF ITS VICTIMS
INCREASING DAILY AND WORLDWIDE.

THE WORLD HEALTH ORGANIZATION THIS WEEK REPORTED 72,000 CASES OF AIDS IN
126 NATIONS. THE MEMBER NATIONS OF THE EUROPEAN ECONOMIC COMMUNITY HAVE
SEEN 8,000 CASES. UGANDA AND TANZANIA, WHERE THE MOST NUMBER OF CASES HAVE
BEEN CONFIRMED IN AFRICA, REPORT A COMBINED TOTAL IN EXCESS OF 4,000.

MORE THAN 48,000 OF THE TOTAL NUMBER OF CASES — eS ARE WITHIN
THE BOUNDARIES OF THE UNITED STATES.

AND 11,507 OF THEM — 24 PERCENT — RESIDE IN NEW YORK STATE.

AIDS IS THE SOCIAL AND THE HEALTH CARE CRISIS OF THIS CENTURY. IT IS RAVAGING
THE LIVES OF MOSTLY YOUNG AMERICANS, JUST AS CERTAINLY AS IT IS CAUSING OUR
HEALTH CARE SYSTEM TO HEMORRHAGE.

THUS, IT 1S QUITE UNDERSTANDABLE WHY THIS DEADLY VIRUS HAS GENERATED MORE
DISCUSSION AND CONTROVERSY THAN ANY OTHER MEDICAL PROBLEM IN THE HISTORY
OF MANKIND.

BUT WE MUST CONDUCT THAT DEBATE WHILE ACCEPTING OUR SOCIETAL
RESPONSIBILITY TO ENSURE THAT AIDS VICTIMS RECEIVE THE HUMANE MEDICAL
SERVICES THEY REQUIRE, IN A MANNER THAT RESPECTS THEIR PERSONAL DIGNITY,
WHILE WE INVEST HEAVILY IN RESEARCH TO FIND A CURE.

IT REQUIRES FEDERAL INTERVENTION. IT DEMANDS A NATIONWIDE ATTACK.

THE CREATION OF THIS COMMISSION WAS A WELCOME ACKNOWLEDGEMENT OF THAT
FACT. NEW YORK IS READY TO ASSIST YOU IN ANY WAY POSSIBLE.

TODAY THERE IS NO CURE FOR AIDS, SO OUR HIGHEST PRIORITY REMAINS PREVENTION
THROUGH EDUCATION WHILE WE FUND MASSIVE RESEARCH.

NEW YORK WAS THE FIRST STATE IN THE NATION TO ALLOCATE FUNDS FOR AIDS
RESEARCH. A TOTAL OF 28 TWO-YEAR RESEARCH GRANTS, TOTALING $1.5 MILLION,
WERE AWARDED IN 1984. IN THE PAST FISCAL YEAR, AN ADDITIONAL $2.7 MILLION WAS
APPROPRIATED FOR RESEARCH ALONE.

NEW YORK HAS TAKEN AN ACTIVE ROLE IN THE DISSEMINATION OF INFORMATION
ABOUT AIDS TO THE PEOPLE OF OUR STATE. WE HAVE ESTABLISHED HOTLINES, WE HAVE
BLANKETED THE STATE WITH EDUCATIONAL MATERIALS IN SPANISH AS WELL AS IN
ENGLISH.

Crecamber 17;:1987 ° ‘+ -Presidenual Commission On-Thadi dy. Epidemic ’ rei wiiageOnes cr.

 

 
 

 

Testimony Of Commissioner Thomas A. Coughlin, Ill

WE OFFER PRESENTATIONS, PANELS AND VIDEOTAPES TO VIRTUALLY EVERY SEGMENT
OF OUR POPULATION.

NEW YORK IS A LEADER IN THE SHARING OF RESEARCH WITH BOTH YOU IN THE
FEDERAL GOVERNMENT AND WITH OUR SISTER STATES, THEIR HEALTH AGENCIES AND
THEIR PRISON SYSTEMS.

GOVERNOR MARIO CUOMO DIRECTED STAFF TO FORMALIZE ITS CONTACTS WITH
HEALTH OFFICIALS THROUGHOUT THE NATION. THAT'S TO ENSURE THAT WE RECEIVE
— AND THAT THEY RECEIVE FROM US IN RETURN — THE MOST UP-TO-DATE RESEARCH
KNOWLEDGE AND TREATMENT INFORMATION AS IT BECOMES AVAILABLE ANYWHERE IN
THIS NATION OR AROUND THE WORLD.

IT 1S EXTREMELY APPROPRIATE — AND, | THINK, VITAL — THAT CORRECTIONAL
PROFESSIONALS BE ACCORDED THE OPPORTUNITY TO ADDRESS THIS PRESIDENTIAL
PANEL ON THIS CRITICAL ISSUE.

AIDS IS THE LEADING CAUSE OF DEATH AMONG INMATES IN THE NEW YORK PRISON
SYSTEM. LAST YEAR, THERE WERE A TOTAL OF 10 INMATE SUICIDES OR MURDERS, WHILE
124 DIED OF AIDS. IN THE FIRST 11 MONTHS OF 1987, THERE WERE A TOTAL OF SEVEN
INMATE SUICIDES OR HONICIDES, BUT 142 HAVE DIED OF AIDS.

IT 1S ESTIMATED THAT THERE ARE APPROXIMATELY 1,450 CONFIRMED AIDS CASES IN
LOCAL, COUNTY, STATE AND FEDERAL CORRECTIONAL SYSTEMS IN THIS COUNTRY.
APPROXIMATELY 65 PERCENT OF THEM ARE LOCATED IN NEW YORK STATE, NEW JERSEY,
FLORIDA AND THE FEDERAL SYSTEM.

NEW YORK STATE CORRECTIONAL SERVICES, UNFORTUNATELY, HAS A
DISPROPORTIONATE SHARE OF THESE CASES — ALMOST ONE-THIRD.

IT 1S NO SIMPLE TASK FOR US AS A NATION TO ADDRESS THE MYRIAD OF SOCIAL AND
MEDICAL ISSUES THAT HAVE SURFACED AS A RESULT OF AIDS. TO ADDRESS AN ISSUE
SUCH AS THIS IN A PRISON SETTING IS ALL THE MORE COMPLICATED.

BY THEIR VERY NATURE, PRISONS ARE TENSION-FILLED FACILITIES WHOSE
ADMINISTRATION TAKES THE FORM OF “RISK-MANAGEMENT." THE IMPLICATIONS OF AIDS
WITHIN THE NATION'S PRISON SYSTEMS BRINGS DIMENSIONS THAT FEW OUTSIDE THE
CORRECTIONAL FIELD CAN IMAGINE:

SEGREGATION OF HIV-SEROPOSITIVES, ISOLATION OF CONFIRMED AIDS CASES,
UNIVERSAL TESTING FOR THE HIV VIRUS, THE ISSUANCE OF STERILE NEEDLES TO LV.
DRUG ABUSERS, AND THE DISTRIBUTION OF CONDOMS TO PRISON INMATES ARE BUT A
FEW OF THE CORRECTIONAL ISSUES BEING DEBATED NATIONALLY.

MUCH OF THE MEDIA ATTENTION AND PUBLIC CONCERN ABOUT AIDS FOCUSED A FEW
YEARS AGO, WHEN THE WORLD LEARNED THAT ACTOR ROCK HUDSON HAD DIED FROM
AIDS. THE MEDIA SPOTLIGHT WILL AGAIN FOCUS EACH TIME ANOTHER WELL-KNOWN
INDIVIDUAL FALLS VICTIM TO AIDS.

THE NEW YORK STATE DEPARTMENT OF CORRECTIONAL SERVICES HAS BEEN DEALING
WITH AIDS FAR LONGER THAN THAT. TO BE EXACT, SINCE NOVEMBER OF 1981 — WHEN
THE FIRST INMATE DIED OF A CONFIRMED CASE OF AIDS.

NEW YORK SUFFERS THE UNFORTUNATE DISTINCTION OF HOUSING MORE THAN 50
PERCENT OF ALL AIDS-RELATED CASES IN STATE PRISONS AROUND THE NATION.

TO DATE, THERE HAVE BEEN 577 CONFIRMED AIDS CASES AMONG INMATES
INCARCERATED IN OUR STATE PRISON SYSTEM. OF THAT NUMBER, 326 HAVE DIED, 99
REMAIN IN CUSTODY AND 152 HAVE BEEN RELEASED EITHER BY PAROLE, THROUGH
EXPIRATION OF SENTENCE OR BY COURT ORDER.

December 17, 1987 Presidential Commission On The H.1.V. Epidemic Page Two

 

 

 
 

 

- Testimony Of Commissioner Thomas A: Coughlin, Ill

“OUR ANALYSIS OF AIDS DATA SHOWS THE INCIDENCE OF A!DS INCREASED FROM ONLY
TWO CASES IN 1981 TO 165 NEW CASES IN THE FIRST ELEVEN MONTHS OF 1987. WE HAVE
SEEN A RATE OF THREE CONFIRMED CASES PER 1,000 NEW ADMISSIONS FOR THE PAST
THREE YEARS. !T APPEARS TO HAVE STABILIZED AT THAT FIGURE.

A STUDY CONDUCTED BY THE NEW YORK STATE COMMISSION OF CORRECTION, AN -
INDEPENDENT WATCHDOG-TYPE OF AGENCY, COULD NOT CONFIRM EVEN ONE CASE OF
AN INMATE CONTRACTING AIDS IN PRISON.

IN OTHER WORDS, ITS STUDY OF THE FIRST 250-PLUS CASES INDICATED AIDS WAS
BEING BROUGHT INTO PRISON, IT WAS NOT BEING SPREAD FROM WITHIN.

THAT IS AN IMPORTANT DISTINCTION.

MOST PEOPLE’S CONCEPTIONS — OR, MORE ACCURATELY, THEIR MISCONCEPTIONS
— ABOUT PRISONS ARE BASED UPON THE JIMMY CAGNEY-STYLE MOVIES OF THE 19408,
IN WHICH ALLUSIONS TO GANG RAPES AND FORCED HOMOSEXUALITY WERE RAMPANT.

THAT WAS THE TINSELTOWN PERCEPTION. HERE’S THE NEW YORK REALITY.

THERE HAVE BEEN FEWER THAN A DOZEN HOMOSEXUAL RAPES IN PRISON SINCE |
BECAME COMMISSIONER IN AUGUST OF 1979. REMEMBER, A LARGE PROPORTION OF
OUR INMATES ARE HOUSED IN CELLS, AND WE DO NOT DOUBLE-CELL IN NEW YORK.

AND WHILE WE DO OUR BEST TO DISCOURAGE THEM, MOST OF THE HOMOSEXUAL
RELATIONSHIPS THAT DO EXIST AMONG INMATES TEND TO BE CONSENSUAL AND
LONG-TERM.

DRUG USE AMONG INMATES IS MORE OF THE PILL AND MARIJUANA VARIETY. THE
“WORKS” NEEDED TO DO COCAINE OR HEROIN ARE EXTREMELY DIFFICULT TO HIDE IN
A CELL. AND WE RUN K-9 UNITS THROUGH OUR PRISONS REGULARLY.

| HAVE FOR YEARS TOLD INMATES NOT TO USE DRUGS AND NOT TO BECOME INVOLVED
IN HOMOSEXUAL RELATIONSHIPS ... BECAUSE THEY ARE AGAINST THE RULES.

| AM NOT NAIVE. | KNOW SOME DRUG USE AND HOMOSEXUAL ACTIVITY OCCUR.

BUT NOW I TELL INMATES DRUG USE AND HOMOSEXUALITY ARE AGAINST THE RULES
— AND THEY CAN KILL YOU.,

NOW HAVING SAID THAT, | DON’T SEE THE LOGIC OF PROVIDING INMATES WITH THE
MEANS TO ENGAGE IN THE ACTIVITY I JUST TOLD THEM WAS PROHIBITED.

WE IN NEW YORK DO NOT PROVIDE INMATES IN GENERAL POPULATION WITH CONDOMS
OR NEEDLES. °

WE HAVE, SINCE THE LATE 1970S, MADE CONDOMS AVAILABLE FOR BIRTH AND
DISEASE CONTROL TO LEGALLY MARRIED INMATES WHEN THEY AND THEIR SPOUSES
PARTICIPATE IN THE FAMILY REUNION PROGRAM.

HOWEVER, | DENY PARTICIPATION IN THE PROGRAM TO INMATES SUFFERING FROM
INFECTIOUS DISEASES, AND THOSE INCLUDE AIDS. EARLIER THIS YEAR, NEW YORK'S
HIGHEST COURT UPHELD MY PREROGATIVE TO DO THAT.

THOSE POLICIES TEND TO EXPLAIN WHY THE INCIDENCE AND RATE OF AIDS
CONFIRMATION IS INCREASING ON THE OUTSIDE, BUT NOT IN PRISON.

THE INCREASED NUMBERS WE EAVE SEEN ARE DRIVEN BY THE INCREASE IN THE

OF er POPULATION, NOT THROUGH TRANSMISSION AMONG INMATES ALREADY INSIDE
F PRISON.

IN FACT, NO EMPLOYEE OF THIS DEPARTMENT — AND WE HAVE ALMOST 22,000 OF
THEM NOW — HAS CONTRACTED AIDS IN THE WORK PLACE SINCE THE DISEASE WAS
IDENTIFIED MORE THAN SIX YEARS AGO.

December 17, 1987 Presidential Commission On The H.LV. Epidemic Page Three

 

 
 

 

Testimony Of Commissioner Thomas A. Coughlin, Ill

| OUR INMATE AIDS POPULATION MAY WELL BE THE LARGEST COLLECTIVE GROUPING
OF AIDS PATIENTS IN THE NATION. ONE MIGHT ASK WHY WE HAVE THAT UNDESIRED
DISTINCTION. THE ANSWER IS REALLY QUITE SIMPLE. 2

ONE OF THE UNIQUE ASPECTS OF INMATES WITH AIDS IN OUR SYSTEM IS THEIR
OVERWHELMING HISTORY OF I.V. DRUG ABUSE — CONTRARY TO THE COMMUNITY AT
LARGE, WHERE THE DOMINANT MEANS OF TRANSMISSION HAS BEEN THROUGH SEXUAL
CONTACT, MUCH OF THAT AMONG MALE HOMOSEXUALS.

IN NEW YORK, BEING A HOMOSEXUAL IS NOT GOING TO LAND YOU IN PRISON. IN FACT,
MORE THAN 95 PERCENT OF AIDS CASES TO DATE HAVE BEEN AMONG INMATES WHO
ADMIT TO HAVING USED I.V. DRUGS, OR WHO HAVE A HISTORY OF DRUG ABUSE.

BUT IT DOES FOLLOW, HOWEVER, THAT INDIVIDUALS TRAFFICKING IN ILLICIT DRUGS
— OFTEN USERS THEMSELVES — ARE GOING TO WIND UP IN PRISON.

DRUG USERS ARE ON THE FRINGE OF THE CRIMINAL JUSTICE SYSTEM, AND THEREBY
THEY ARE MORE PRONE TO END UP IN PRISON.

THIS PHENOMENON IS FURTHER ENHANCED BY THE EXISTENCE OF “SHOOTING
GALLERIES" IN NEW YORK CITY AND THE GREATER NEW JERSEY AREA. THOSE AREAS
ARE COMMON SITES FOR THE MULTIPLICITY OF ABUSERS TO SHARE NARCOTICS, AS
WELL AS OTHER INTRAVENOUS PARAPHENALIA.

_ LET ME DRAW A PROFILE FOR YOU OF THE INMATE AIDS VICTIM IN NEW YORK.
HE IS ONLY 34 YEARS OF AGE ... BUT HE WILL DIE WITHIN 19 MONTHS.

CHANCES ARE ONE OUT OF TWO THAT HE IS HISPANIC; ONE OUT OF THREE THAT HE
IS BLACK. |

A DRUG ABUSER FROM NEW YORK, CITY, HE WAS CONVICTED OF A DRUG-RELATED
OFFENSE. oe

THE AIDS VICTIM’S TYPICAL CRIME OF COMMITMENT MAY HAVE BEEN BURGLARY OR
ROBBERY. BUT WE FIND TIME AND AGAIN THAT THE CRIME WAS A MEANS TO GET THE
MONEY OR GOODS TO OBTAIN DRUGS.

IN FACT, THE TRADITIONAL “RANKING”, IF YOU WILL, OF CRIMES OF COMMITMENT
SHOWED THE GREATEST NUMBER COMMITTED FOR ROBBERY, BURGLARY WAS SECOND,
AND EVERY OTHER CRIME WAS AN “ALSO RAN.”

IN 1986, DRUG-RELATED CRIMES SURPASSED BURGLARY AS THE SECOND LEADING
CRIME OF COMMITMENT.

THROUGH DECEMBER 4, 1987, DRUG-RELATED CRIMES HAVE SURGED PAST ROBBERY
‘TO BECOME THE LEADING CRIME OF COMMITMENT.

IN FACT, WHEN MARIO CUOMO BECAME GOVERNOR, THERE WERE 2,684 INMATES
SERVING TIME FOR DRUG OFFENSES, |

TODAY, THEY ARE 8,261 DRUG OFFENDERS AMONG THE MORE THAN 40,000 INMATES
INCARCERATED IN OUR 50 STATE CORRECTIONAL FACILITIES.

THE TOLL FROM AIDS COULD BE MEASURED IN THE PERSONAL MISERY OF ITS VICTIMS
OR IN THE HEART-RENDING SORROW OF THEIR FAMILIES AND FRIENDS.

IT COULD BE MEASURED IN THE SKYROCKETING COSTS OF OUR OWN MEDICAL CARE.

OR IN THE TAX BILLS WE PAY TO PROVIDE MEDICAL CARE TO THOSE LESS FORTUNATE
THAN OURSELVES.

BUT IT ALSO MANIFESTS ITSELF IN WHAT WE AS ASOCIETY LOSE — FROM OUR FUTURE
— EVERY SINGLE TIME A YOUNG PERSON TURNS TO DRUGS.

December 17, 1987 Presidential Commission On The H.LV. Epidemic Page Four

 

 

 

 
 

| Testimony Of Commissioner Thomas A, Coughlin, Il
THAT. LADIES AND GENTLEMEN, IS ALSO PART OF THE TOLL FROM AIDS.

WE WILL SOMEDAY FIND A CURE FORAIDS — BUT WE WILL NOT STOP ITS SPREAD UNTIL
WE DO MORE IN OUR WAR ON DRUGS.

“JUST AS WE IN NEW YORK HAVE REDOUBLED OUR EFFORTS TO BATTLE DRUG ABUSE,
WE HAVE JOINED FORCES WITH OTHERS TO COMBAT AIDS.

WE WORK WITH THE FEDERAL CENTERS FOR DISEASE CONTROL IN ATLANTA, THE
NATIONAL INSTITUTE FOR JUSTICE IN DENVER, THE AMERICAN CORRECTIONAL
ASSOCIATION, OUR OWN STATE HEALTH DEPARTMENT, AND GOVERNOR CUOMO’'S

OFFICE OF EMPLOYEE RELATIONS — PLUS A HOST OF GAY ALLIANCE AND OTHER
PRIVATE-SECTOR ORGANIZATIONS.

ALL HAVE THE SAME PURPOSE: TO DISSEMINATE THE FACTS ON AIDS WHILE SCIENCE
ATTEMPTS TO FIND A CURE.

THE HIGH ANXIETY AND PARANOIA OF CORRECTIONAL WORKERS, AS WELL AS THAT
OF INMATES, PROVIDES ONLY ONE MORE AREA OF CONCERN.

OUR HEALTH DEPARTMENT HAS AUTHORED A BOOKLET THAT POSES AND THEN
ANSWERS THE 100 MOST-OFTEN ASKED QUESTIONS ‘ABOUT AIDS. IT IS THE FIRST
BOOKLET OF ITS TYPE IN THE NATION.

ITS DISTRIBUTION IS MANDATORY: TO ALL DEPARTMENT OF CORRECTIONAL SERVICES
EMPLOYEES, AS WELL AS TO INMATES. IT 1S AVAILABLE IN BOTH ENGLISH AND SPANISH.

| BELIEVE WE ARE THE ONLY CORRECTIONAL SYSTEM IN THE NATION TO HAVE
REQUIRED THAT SUBSTANTIAL INFORMATION ON AIDS BE PLACED IN THE HANDS OF
EVERY INMATE AND EVERY EMPLOYEE.

| THINK THAT POLICY HAS DONE WELL IN ALLEVIATING SOME OF THE FEARS ABOUT
AIDS AMONG INMATES AND STAFF. OF COURSE, THERE ARE PEOPLE IN PRISON, LIKE
SOCIETY IN GENERAL, WHOSE MINDS ARE CLOSED TO ALL BUT THEIR PRECONCEIVED
DECISIONS ABOUT AIDS. | CANNOT CLIMB INSIDE THE HEADS OF INMATES AND STAFF
AND CHANGE THEIR THOUGHTS.

BUT | DO BELIEVE OUR RANK-AND-FILE EMPLOYEE AND OUR INMATES HAVE RECEIVED
MORE INFORMATION ON AIDS THAN THOSE IN ANY OTHER SYSTEM NATIONWIDE. HOW
THEY EVALUATE IT | MUST LEAVE TO THEM.

WE KEEP THEM CURRENT WITH THE LATEST DEVELOPMENTS ON AIDS IN AN AIDS
UPDATE COLUMN THAT APPEARS MONTHLY IN THE DEPARTMENT’S NEWSLETTER, THAT
IS EQUALLY AVAILABLE TO INMATES AS WELL AS TO STAFF.

BUT | WOULD LIKE TO SHARE ONE VIGNETTE CONCERNING OUR STAFF. A CORRECTION
OFFICER WAS, NOMINATED IN 1985 FOR THIS DEPARTMENT’S HIGHEST AWARD FOR HIS

WORK IN GUARDING INMATES WITH AIDS WHO WERE BEING TREATED AT AN OUTSIDE
HOSPITAL.

THE ADMINISTRATOR OF THAT OUTSIDE HOSPITAL, IN HIS NOMINATION, WROTE, “THE
HOSPITAL ADMINISTRATION FELT COMPELLED TO NOMINATE THIS OFFICER FOR THIS
AWARD, AS A TESTAMENT TO THE OBVIOUS NEED FOR HUMANENESS IN DEALING WITH
SUCH A MISUNDERSTOOD AND FRIGHTENING DISEASE.”

WE CONTINUE TO WORK WITH THE AIDS INSTITUTE TO EXPAND AND TO UPGRADE OUR
EFFORTS TO PROVIDE ONGOING TRAINING AND EDUCATION TO OUR EMPLOYEES.

IN FACT, A SEGMENT ON AIDS IS INTEGRATED INTO THE CURRICULUM FOR ALL NEW
CORRECTION OFFICERS.

THROUGHOUT ALL OF THIS, WE HAVE WORKED HAND-IN-HAND WITH THE LABOR
UNIONS REPRESENTING STATE EMPLOYEES. _.. 0... ~0-pe-.;. ee ee lee ete

December 17, 1987 Presidential Commission On The H.LV. Epidemic . ” Page Five

 

 

 

 
 

Testimony Of Commissioner Thomas A. Coughlin, Ill

IT CONTINUES TO BE OUR INTENTION TO REMAIN OPEN, CANDID AND UPFRONT WITH
OUR EMPLOYEES — AND ALL NEW YORKERS — CONCERNING AIDS.

WE HAVE INTERDISCIPLINARY TEAMS AVAILABLE TO MAKE PRESENTATIONS TO STAFF
AS WELL AS INMATES THROUGHOUT OUR SYSTEM. THEY ARE ALSO AVAILABLE TO
COMMUNITY ADVISORY BOARDS, WHICH ARE CITIZENS’ GROUPS IN MANY OF THE AREAS
WHERE OUR PRISONS ARE LOCATED.

THE TEAMS INCLUDE NOT ONLY MEDICAL EXPERTS, BUT SECURITY, ADMINISTRATION
AND PERSONNEL SPECIALISTS AS WELL.

WE HAVE VIDEOTAPES AVAILABLE OF THESE PRESENTATIONS TO INCREASE THE
NUMBER OF SESSIONS THAT CAN BE HELD. AND MEDICAL PERSONNEL HAVE ALSO
PROVIDED VIDEOTAPES THAT EXPLORE THE KNOWLEDGE AS WELL AS THE QUESTIONS
SURROUNDING THIS DISEASE.

ONE VIDEOTAPE IN PARTICULAR HAS DRAWN NATIONAL ACCLAIM.

IT WAS PRODUCED BY INMATES AND STAFF AT THE TACONIC CORRECTIONAL
FACILITY. ITS MAJOR FOCUS IS ON THE SING SING CORRECTIONAL FACILITY’S DISCRETE
AIDS UNIT, THE'FIRST UNIT OF ITS KIND IN THE NATION.

BUT IT ISN’T THE STORY OF THE DISCRETE UNIT. IT IS THE STORY OF THREE PEOPLE,
THREE INMATES, DYING OF AIDS ON THAT UNIT.

THE FILM, ENTITLED “AIDS: A BAD WAY TO DIE", HAS BEEN DISSEMINATED
THROUGHOUT THE COUNTRY, AS WELL AS ABROAD.

IT 1S A POWERFUL DRAMATIZATION: INMATES DYING OF AIDS WARNING THEIR PEERS
TO SWEAR OFF DRUGS, AS THEIR FAMILIES EXPLAIN THE AGONY OF WATCHING THEIR
SONS DIE. ALL THREE INMATES WHO WERE SHOWN IN THE FILM HAVE SINCE DIED:

WE ARE DOING MORE THAN JUST EDUCATION.

GOVERNOR CUOMO'S CRIMINAL JUSTICE SUBCABINET, OF WHICH OUR AGENCY ISA
MAJOR PART, HAS AUTHORED A POLICY FOR DEALING WITH AIDS INSIDE OF STATE
CORRECTIONAL FACILITIES.

WE WROTE IT IN CONJUNCTION WITH THE FEDERAL CENTERS FOR DISEASE CONTROL
AND OUR STATE HEALTH DEPARTMENT. IT MADE NEW YORK ONE OF THE FEW STATES
IN THE NATION WITH A WRITTEN, ACROSS-THE-BOARD AND MEDICALLY-APPROVED
POLICY FOR THE CARE OF PRISON INMATES SUFFERING FROM THIS DISEASE.

WE BELIEVE PRISON IS A MICROCOSM OF SOCIETY. WE BELIEVE INMATES ARE
ENTITLED TO TREATMENT EQUIVALENT TO WHAT THEY WOULD RECEIVE ON THE
OUTSIDE.

WE DO NOT SEGREGATE SERO-POSITIVES FROM SOCIETY; WE DO NOT SEGREGATE
THEM IN NEW YORK PRISONS.

SOCIETY DOES NOT ISOLATE CONFIRMED AIDS CASES AGAINST THEIR WILL; NOR DO
WE IN OUR PRISONS.

WE PROVIDE INMATES WITH THE SAME MEDICAL TREATMENT — AN INTENSIFIED
INFECTIOUS DISEASE REGIMEN SIMILAR TO THAT INDICATED BY HEPATITIS-B INFECTION
— AS THEY WOULD RECEIVE ON THE OUTSIDE, EITHER IN A HOSPITAL OR AS AN
OUTPATIENT.

JUST AS HOSPITALS RESPECT PHYSICIAN/PATIENT CONFIDENTIALITIES, WE DO THE
SAME. A NOTATION OF THE PRESENCE OF AN INFECTIOUS DISEASE IS MADE IN THE
INMATE’S CHART. HOWEVER, TO MANY, THAT IS A BUZZWORD FOR AIDS.

 

December 17, 1987 Presidential Commission On The H.LV. Epidemic : Page Six

 

 

 

 
 

 

Testimony Of Commissioner Thomas A. Coughlin, Ill

OUTSIDE HOSPITALS MAKE CAPS, GOWNS AND GLOVES AVAILABLE TO PERSONNEL
‘COMING IN'CONTACT WITH PATIENTS WITH INFECTIOUS DISEASE: 8@°BO-WE "ANB: tke
AT MANY HEALTH CARE CENTERS ACROSS THE NATION, MOST OF OUR PERSONNEL DO
NOT USE THEM, UNLESS THEY ARE DEALING WITH A PERSON WHO HAS ACTED
VIOLENTLY IN THE HOSPITAL. THEN, WE ARE DEALING WITH PEOPLE'S VIOLENT
TENDENCIES, NOT THE FACT THAT THEY HAVE AIDS.

HOSPITALS DO NOT CHAIN THEIR PATIENTS TO THEIR BEDS. WE DO NOT CHAIN
INMATES TO THEIR'S WHEN THEY REQUIRE OUTSIDE HOSPITALIZATION. WE SEND
CORRECTION OFFICERS TO PROVIDE SECURITY.

IS IT EXPENSIVE? YES. BUT IT IS ALSO HUMANE.

OUR DECISIONS ARE MEDICAL ONES: THE ONLY TIME ANY SICK INMATES CAN BE
ISOLATED IS FOR MEDICAL REASONS ATTESTED TO BY A PHYSICIAN — WHETHER THE
AFFLICTION BE HEPATITIS, THE FLU ... OR AIDS.

THEREFORE, AT ANY GIVEN TIME, WE HAVE SEVERAL AIDS VICTIMS AND DOZENS OF
AIDS-RELATED CASES IN GENERAL POPULATION. THEY HAVE NOT BEEN A THREAT TO
THE SECURITY OF THEIR INSTITUTIONS, NOR HAS ANY VIOLENCE BEEN VISITED UPON
THEM BY OTHER INMATES OR STAFF.

TO THE SKEPTICS, | WOULD ADD THAT THE INCIDENCE OF AIDS, COUPLED WITH OUR
MEDICAL STUDIES, SHOW OUR EDUCATION EFFORT IS WORKING — AIDS IS NOT
SPREADING WITHIN OUR PRISON WALLS, AND WE HAVE DONE MUCH TO ALLAY THE
FEARS OF STAFF AS WELL AS INMATES.

ANOTHER QUESTION THAT IS RAISED IS WHETHER OR NOT ALL INMATES, UPON
RECEPTION, SHOULD BE — QUOTE — TESTED FOR AIDS — END QUOTE.

THERE IS NO TEST FOR AIDS.

THERE IS A TEST FOR SERO-POSITIVE EXPOSURE TO THE HUMAN IMMUNODEFICIENCY
VIRUS.

IT DOES NOT MEAN YOU HAVE AIDS. IT DOES NOT MEAN YOU WILL DEVELOP AIDS. IT
MEANS YOU HAVE BEEN EXPOSED TO THE VIRUS.

THAT'S PROBABLY WHY ONLY ONE OR TWO STATES WITH SMALL PRISON POPULATIONS

DO MASS TESTING. AND THEIR RATES HAVE RANGED FROM LESS THAN A PERCENT TO
TWO OR THREE.

AND AS | HAVE SAID, THE RATE OF CONFIRMATION IN OUR SYSTEM HAS STABILIZED AT
THREE PER THOUSAND.

THAT BEING SAID, WHAT WOULD | DO WITH THE RESULTS OF MASS TESTING?

| CANNOT TREAT ANYONE WITH EXPERIMENTAL DRUGS; NEW YORK STATE LAW
PROHIBITS INMATES FROM RECEIVING THEM.

'T DOESN'T TELL ME WHO IS GOING TO CONTRACT AIDS. AND I DON’T SEGREGATE OR
ISOLATE SERO-POSITIVES.

AND WHAT HAPPENS IF | TURN UP FALSE POSITIVES?

THE ONLY THING TESTING WOULD DO IS RUN THE RISK OF THE DATA BEING
COMPROMISED AND SERO-POSITIVES BEING STIGMATIZED — OR WORSE.

THEREFORE, IN CONJUNCTION WITH THE FEDERAL CENTERS FOR DISEASE CONTROL
AND OUR OWN HEALTH DEPARTMENT, | MADE THE JUDGMENT SEVERAL YEARS AGO
THAT WE WOULD NOT CONDUCT MASS TESTING. 1 HAVE SEEN NOTHING SINCE THEN
THAT INDICATES | SHOULD CHANGE THAT POLICY.

December 17, 1987 Presidential Commission On The H.LV. Epidemic = - Page Seven

-~

 

 
 

 

Testimony Of Commissioner Thomas A. Coughilin, Ill

THE ONLY TIME WE DO HIV TESTING IS IF A PHYSICIAN WANTS TO RULE AIDS IN OR OUT
OF A PATIENT DIAGNOSIS. BECAUSE OF THOSE SAME REASONS}! VEALREADY-CITED, Wi -
DO NOT ALLOW INMATES TO TAKE HIV TESTS JUST BECAUSE THEY WANT ONE.

WE ARE, HOWEVER, EMBARKING UPON A BLIND, ANONYMOUS SCREENING PROGRAM
IN CONCERT WITH OUR STATE HEALTH DEPARTMENT.

WITH FUNDING FROM THE CENTERS FOR DISEASE CONTROL, WE WILL TEST 500
INMATES AT OUR MAIN RECEPTION AND CLASSIFICATION CENTER FOR SERO-POSITIVITY
AS WELL AS FOR THE PRESENCE OF HEPATITIS TYPE-B.

IT 1S PART OF A BLIND STUDY DESIGNED TO DETERMINE THE EXTENT OF
SERO-POSITIVITY WITHIN NEW YORK STATE. SOME 100,000 ADULTS AND YOUTHS WILL
BE SCREENED IN HOSPITALS ACROSS NEW YORK.

THAT SCREENING BEGINS NEXT MONDAY, DECEMBER 21ST, AND SHOULD BE
COMPLETED JUST AFTER THE NEW YEAR BEGINS. AGAIN, IT IS A MATTER OF TREATING
INMATES THE SAME WAY WE TREAT PEOPLE STATEWIDE.

LATER THIS MONTH OR IN EARLY JANUARY, WE WILL OPEN AN ACUTE CARE UNIT INA
PUBLIC HOSPITAL — DESIGNED SPECIFICALLY FOR PRISON INMATES DYING OF AIDS. IT
WILL BE THE FIRST OUTSIDE HOSPITAL UNIT IN THE NATION TO BE DEDICATED TOTALLY
TO THE CARE OF PRISONERS WITH AIDS.

THIS IS A SPIN-OFF FROM A WELL-PUBLICIZED VISIT TO NEW YORK CITY BY MOTHER
TERESA — THE WORLD-RENOWNED NOBEL PEACE PRIZE LAUREATE.

ON CHRISTMAS EVE OF 1985, AS A RESULT OF CONVERSATIONS BETWEEN MOTHER
TERESA, GOVERNOR CUOMO AND MYSELF, WE PLACED THREE INMATES IN ST. CLARE'S
HOSPITAL, OPERATED BY THE ROMAN CATHOLIC ARCHDIOCESE OF NEW YORK.

SINCE THAT TIME, LITERALLY DOZENS OF INMATES HAVE BEEN CARED FOR AT THIS
FACILITY.

WE HAVE APPROXIMATELY 12-15 INMATES THERE NOW AT ANY GIVEN TIME, WE WILL
EXPAND THE UNIT TO 30 BEDS, AND | HOPE EVENTUALLY TO HAVE 60 BEDS AVAILABLE
THERE.

IT IS EXPENSIVE FOR US TO HAVE DECIDED TO LOCATE OUR AIDS UNIT IN NEW YORK
CITY, WHERE HOSPITAL COSTS ARE PROBABLY THE HIGHEST IN THE NATION. WE COULD
LOCATE THE UNIT ELSEWHERE AT ONE-THIRD THE COST.

BUT THE INMATES DYING FROM AIDS ARE FROM NEW YORK CITY.

GOVERNOR CUOMO DECIDED TO BITE THE FINANCIAL BULLET AND BE HUMANE. HE
DECIDED TO HOSPITALIZE THEM WHERE VISITS BY RELATIVES AND FRIENDS COULD BE
¢MAXIMIZED.

_ WHERE DO WE GO FROM HERE?
THE FUTURE DOES NOT LOOK VERY ENCOURAGING.

IN THE 1986-87 FISCAL:YEAR, WE SPENT $37 MILLION TO PAY THE SALARIES OF OUR
OWN MEDICAL PERSONNEL. WE ALSO SPENT $22 MILLION FOR ADDITIONAL MEDICAL
SERVICES. OF THAT $22 MILLION, A TOTAL OF $4.5 MILLION — 20 PERCENT — WAS
DEVOTED’ TO THE LESS THAN ONE PERCENT OF INMATES WHO SUFFER FROM AIDS OR
ARC. THOSE COSTS WILL CONTINUE TO ESCALATE IN THE YEARS AHEAD.

TODAY WE HAVE 99 CONFIRMED CASES OF AIDS IN OUR PRISON SYSTEM. IN ADDITION,
THERE ARE 137 AIDS-RELATED COMPLEX CASES. CLEARLY ONE-HALF TO TWO-THIRDS
OF THESE INDIVIDUALS WILL BECOME FULL-BLOWN AIDS CASES WITHIN THE NEXT
SEVERAL MONTHS. WITHIN TWO YEARS, MOST OF THEM WILL DIE.

December 17, 1987 Presidential Commission On The H.1.V. Epidemic Page Eight

 

 

 
 

 

ne

Testimony Of Commissioner Thomas A. Coughiin, Ill

THEIR CARE IS A SIGNIFICANT BUDGETARY CONSIDERATION, GIVEN THE FACT THAT
CARE FOR A SINGLE PATIENT CAN RANGE AS HIGH AS $100,000 FROM ONSET OF ILLNESS
TILL DEATH. WE ARE PAYING ALMOST $600 PER BED PER DAY PER INMATE IN NEW YORK
CITY. FOR 60 INMATES, THAT'S GOING TO BE $1 MILLION EACH MONTH.

AS YOU KNOW, THE DRUG AZT WAS COSTING ITS 19,000 PATIENT-USERS AN AVERAGE
$850-$900 EACH MONTH. MONDAY, THE MAKERS OF THE DRUG, PROBABLY IN REACTION
TO CRITICISMS OF ITS PRICING, DROPPED THE COST BY 20 PERCENT, REDUCING THE
AVERAGE COSTS TO PATIENTS TO APPROXIMATELY $600 PER MONTH — STILL OUT OF
THE REACH OF MOST AMERICANS.

WE HAVE 98 AIDS AND AIDS-RELATED PATIENTS ON THE AZT REGIMEN. THE PRICE CUT
MEANS WE WILL PAY $58,800 OR MORE PER MONTH FOR AZT TREATMENT OF INMATES.

THEN THERE IS THE ARGUMENT MADE BY THE “COST-CONSCIOUS.” THEY SUGGEST

THAT WE RELEASE ALL AIDS PATIENTS SO THAT THE STATE DOES NOT HAVE TO PICK UP
THESE HUGE COSTS.

POVERTY IS ACOMMONALITY AMONG INMATES. VIRTUALLY EVERY INMATE SUFFERING
FROM AIDS, IF RELEASED, WOULD STILL SEE ALL THEIR BILLS PAID IN TAX DOLLARS.

AS A SOCIETY, | DO NOT BELIEVE WE SHOULD RELEASE PEOPLE WHO HAVE BEEN
SENTENCED TO A TERM OF IMPRISONMENT SIMPLY BECAUSE THEY HAVE AIDS. | CANNOT
SPEAK FOR OTHER PRISON SYSTEMS, BUT | KNOW 75 PERCENT OF THE INMATES IN NEW
YORK'S PRISONS WERE SENT THERE FOR VIOLENT CRIMES.

NEW YORK STATE DOES NOT PARDON OR RELEASE INMATES SUFFERING FROM FATAL
DISEASES, BE THE AFFLICTION AIDS, CANCER OR ANY OTHER MALADY.

| BELIEVE WE CAN CARE FOR THE INMATE VICTIMS OF AIDS. | WOULD PREFER TO CARE
FOR ACUTE CASES IN OUTSIDE HOSPITALS, BUT WE CAN PROVIDE EQUIVALENT CARE
INSIDE OF PRISON.

NEW YORK HAS PASSED BEYOND THE CRISIS MENTALITY STAGE THAT NOW GRIPS
SOME OTHER STATE SYSTEMS, AS THEY NOW BEGIN TO SEE THEIR INITIAL CASES OF
AIDS AND AIDS-RELATED COMPLEX.

REMEMBER, THAT WAS THE STAGE THROUGH WHICH THIS DEPARTMENT SUFFERED IN
THE EARLY 1980S.

TODAY, AIDS HAS REVEALED ITSELF AS A MORE POTENT KILLER THAN ANY OF US
COULD HAVE CONCEIVED AT THAT TIME.

BUT DEALING WITH IT HAS PASSED FROM BEING A CRISIS TO BEING ONE OF THE
ADMINISTRATIVE ISSUES IN RUNNING A PRISON THAT | WAS TALKING ABOUT EARLIER,
WHEN | DISCUSSED THE CONCEPT OF “RISK MANAGEMENT."

WE CAN DO IT BECAUSE WE MUST DO IT. AND WE HAVE SHOWN FOR MORE THAN SIX
YEARS THAT ADEQUATE CARE OF THE INCARCERATED CAN BE PROVIDED IF GOVERNORS
AND LEGISLATURES MAKE THE TYPES OF COMMITMENT THAT NEW YORK HAS MADE
EACH FISCAL YEAR.

IN A 1985 DECISION DISMISSING A LAWSUIT BROUGHT BY NEW YORK INMATES OVER
AIDS CARE, A FEDERAL JUDGE DESCRIBED THEIR CONDITION THIS WAY: “THE
UNDISPUTED FACTS AS SET FORWARD IN THE PLEADINGS AND AFFADAVITS BEFORE ME
REVEAL THAT PLAINTIFF'S SITUATIONS ARE INDEED GRIM. THEY SUFFER FROM AN
INCURABLE, FATAL DISEASE, BOTH THE GENESIS AND TRANSMISSION OF WHICH IS
POORLY UNDERSTOOD.”

THE JUDGE CONCLUDED THAT THE FACTS BEFORE HIM “GIVE THE CLEAR IMPRESSION
THAT DEFENDANTS ARE DOING THEIR BEST TO COPE WITH AN EXTRAORDINARILY

December 17, 1987 Presidential Commission On The H.LV. Epidemic Page Nine

 
 

 

Testimony Of Commissioner Thomas A. Coughlin, Il
DIFFICULT PROBLEM INVOLVING ISSUES OF CORRECTIONAL MANAGEMENT, SECURITY
AND HEALTH CARE PROVISION.”

HE WAS — AND IS — CORRECT. CONTENDING WITH AIDS WITHIN A CORRECTIONAL
SETTING DOES GENERATES A HOST OF UNIQUE PROBLEMS.

IN THE COMMUNITY AT LARGE, INDIVIDUALS WHO CCNTRACT THIS DEADLY VIRUS HAVE
SEVERAL OPTIONS AT THEIR DISPOSAL.

FOR INSTANCE, THEY CAN GO TO A PRIVATE PHYSICIAN, A COMMUNITY CLINIC AND/OR
A HOSPITAL OF THEIR CHOICE. UPON RECEIVING A DEFINITIVE DIAGNOSIS OF AIDS AND
SUBSEQUENT TREATMENT, WHICH MAY OR MAY NOT RESULT IN HOSPITALIZATION, THEY
HAVE THE ABILITY TO RETURN TO A QUASI-NORMAL ENVIRONMENT.

THE DEGREE TO WHICH THOSE INDIVIDUALS MAINTAIN THEIR MEDICAL
CONFIDENTIALITY DETERMINES IF CO-WORKERS, FAMILY OR FRIENDS ARE AWARE OF
THEIR PHYSICAL STATUS.

CONVERSELY, IF THAT INFORMATION BECOMES PUBLIC KNOWLEDGE, THOSE
INDIVIDUALS HAVE THE OPTION TO CHANGE JOBS OR TO MOVE TO A NEW AREA.

INMATES ARE NOT AFFORDED SUCH OPTIONS.

AND CORRECTIONAL STAFF DO NOT HAVE THE GENERAL PUBLIC'S RIGHT OF FREE
ASSOCIATION — OR DISASSOCIATION — WHILE ON THE JOB.

THOSE ARE TWO AREAS WHERE OUR ANALOGY OF A MICROCOSM DOES NOT APPLY.

AND THEY ARE THE HEART OF WHAT MAKES THE CARE OF INMATES WITH AIDS
DIFFERENT FROM THE CARE AVAILABLE TO THE GENERAL PUBLIC.

WE OWE EVERY SICK PERSON MEDICAL CARE THAT IS HUMANE, REGARDLESS OF THEIR
ABILITY TO PAY FOR IT.

WE MUST ENCOURAGE THEM TO MAINTAIN THEIR DIGNITY AND SELF-RESPECT,
REGARDLESS OF THE CRUELTY WITH WHICH SOME MIGHT CHARACTERIZE OR MOCK
THEIR ILLNESS.

NO ONE HAS DISCOVERED A CURE FOR THE SLURS AND THE FALSEHOODS DIRECTED
AT THIS DISEASE AND THE PEOPLE WHO SUFFER FROM IT.

THERE, REGRETABLY, OUR WORLDS REMAIN ENTWINED.

MAYBE TOGETHER, WE CAN FIND A CURE TO BOTH THE DISEASE, AND THE
DISINFORMATION SPREAD ABOUT ITS ORIGINS AND ITS VICTIMS.

THANK YOU FOR THIS OPPORTUNITY.

| WILL NOW ATTEMPT TO ANSWER ANY QUESTIONS THAT MEMBERS OF THE
COMMISSION MIGHT LIKE TO POSE.

December 17, 1987 Presidential Commission On The H.1.V. Epidemic Page Ten

 

 

 
 

 

DRAFT

Needle Sharing and the Transmission of
Human Immunodeficiency Virus Infection Among Intravenous Drug Abusers

I am Dr. Roy W. Pickens, Director of the Division of Clinical Research,
National Institute on Drug Abuse (NIDA). NIDA is the lead Federal agency
within the United States with responsibility for reducing the demand for
illicit drugs. NIDA has a commitment to help curb the spread of the Acquired
Immunodeficiency Syndrome (AIDS) among intravenous drug abusers, their sexual
partners, and children. The Institute has initiated a program of research,
training, and technical assistance regarding the drug abuse aspects of AIDS.

In the United States, intravenous drug abusers, along with homosexual and
bisexual men, are one of the groups most at risk for contracting AIDS.
Twenty-five percent of adult persons with AIDS in the U.S. report that they
have used illicit drugs intravenously. AIDS among intravenous drug abusers
has until recently been concentrated largely in a small number of metropolitan
areas. However, cases are now emerging in communities across the U.S. and
have been reported in all 50 States, the District of Columbia, and the
Commonwealth of Puerto Rico. Thus, AIDS among intravenous drug dbusers is a
public health problem that must be addressed on a national level.

AIDS is spread among intravenous drug abusers primarily through the sharing of
needles, syringes, and other paraphernalia used in the illicit injection of
drugs. Since drug injection equipment is widely shared among intravenous drug
abusers and since they seldom take adequate steps to sterilize injection
equipment, the potential for the rapid spread of AIDS in this population is
considerable.

In my remarks today, I will first address the magnitude of the intravenous
drug abuse problem in the U.S. I will also describe the extent of needle
sharing among intravenous drug abusers and their response to the AIDS
epidemic. Then, I will consider possible strategies to prevent HIV
transmission through needle sharing. Finally, I will briefly identify areas
for future research. ;

Magnitude of the Intravenous Drug Abuse Problem

At present we do not have accurate data on the prevalence of intravenous drug
abuse. While a number of abused drugs are injected intravenously, heroin and
cocaine are thought to account for most cases of intravenous abuse. Heroin
addicts often use cocaine intravenously in addition to heroin, and use of
cocaine by heroin addicts appears to be increasing. A sizeable number of
individuals are using cocaine intravenously without also using heroin.
Significant numbers of intravenous users of PCP, amphetamine, and barbiturates
are also known to exist.

Among intravenous drug users, intensity of drug use varies widely, ranging
from occasional use on a weekly or monthly basis to compulsive daily use.
Individuals who inject drugs intravenously on a daily basis represent the most

 

 
 

 

severe form of drug abuse. Obtaining information on the size and
characteristics of this population has been difficult because they actively
avoid public attention due to the illicit nature of their drug use and
associated activities (i.e., engaging in criminal acts to obtain money for the
purchase of drugs).

Most of our information on the characteristics of intravenous drug users comes
from individuals admitted to drug abuse treatment programs. The
representativeness of these individuals to intravenous drug abusers in general
is unknown. Unfortunately, the total number of intravenous drug abusers
cannot be estimated from the number of addicts in treatment, although most
drug abuse authorities believe that only about 20% of the total addict
population is in treatment at any given time. "

NIDA is currently estimating the total number of intravenous drug users in the
United States at 1.1 to 1.3 million individuals. This estimate is based on a
number of sources, including published reports on prevalence of drug use, data
generated by the National Household Survey on Drug Abuse, trends in patterns
of drug use by clients admitted to drug abuse treatment programs, and
estimates provided by the States.

Needle Sharing Among Intravenous Drug Abusers

Detailed, systematic data on the needle-sharing practices of intravenous drug
abusers are not available, and additional research in this area is needed.
Data that are available indicate that opiate addicts commonly share injection
equipment, including needles, syringes, and "cookers" which are used to
prepare drugs for injection. For example, a 1985 study in California found
that 80 percent of addicts reported sharing their needles (Levy et al. 1986).
In a study conducted between September 1983 and March 1985, 68 percent of
addicts admitted to an inpatient drug abuse treatment program in Dallas,
Texas, reported sharing needles, and having shared them during 40 percent of
their drug use episodes (Black et al. 1986), A study of intravenous drug
abusers receiving drug abuse treatment in six areas across the U.S. (New York
City, Baltimore, Tampa, San Antonio, Denver, and Southern California) found
rates of needle sharing ranged from 70 percent in New York City to 99 percent
in San Antonio (Lange et al. 1987). .

Drug use practices differ across the United States. For example, shooting
galleries, where addicts can rent injection equipment, are common in New York,
whereas residential hotels are a common locale for needle sharing in San
Francisco. Among Mexican-Americans in the Southwest, needle sharing tends to
occur within established social networks. Although there are regional and
cultural differences in drug use practices, the sharing of drug injection
equipment among intravenous drug abusers is common throughout the United
tates.

Needle sharing among intravenous drug abusers occurs because it fulfils both
practical and social functions. Sterile needles are not readily available to
intravenous drug abusers in the United States. Several factors contribute to

 

 
 

 

-3-

the scarcity of these needles.’ In some States (generally those States with
the largest intravenous:drug abuse problem), sterile needles and syringes are
not available without a prescription. Even where prescriptions are not needed
to purchase needles, pharmacists may be unwilling to sell needles to
intravenous drug abusers. Also, the possession of needles for purposes of
injecting illicit drugs is generally prohibited under State paraphernalia
legislation. Fearing arrest, addicts are hesitant to carry their own
injection equipment with them.

Opiate addicts typically inject drugs several times per day. The nature of
addiction is such that: addicts feel a strong craving for drugs and a desire to
avoid uncomfortable withdrawal symptoms. Thus, once addicts obtain drugs,
they experience an urgency to inject, using whatever injection equipment is at
hand. Needle sharing makes it possible to inject drugs with minimum delay and
without carrying injection equipment.

In addition to the practical function of needle sharing, sharing also occurs
for social reasons. Within small groups of intravenous drug abusers, it may
reflect a sense of camaraderie and trust. Sharing beyond one's intimates
reflects an ethic of cooperation among addicts. Thus, needle sharing has
become one of the well-entrenched social practices of addict subcultures,
supporting ready access to needles.

While intravenous drug abusers commonly share injection equipment, most
addicts do not adequately clean their equipment between users. For example,
among San Francisco addicts who acknowleaged sharing needles, only 19 percent
reported always sterilizing their needles, while another 16 percent reported
that they usually sterilized their needles (Chaisson et al. 1987). It is
important to recognize that the places where many addicts congregate,
purchase, and inject their drugs -- street corners, back alleys, abandoned
buildings -- do not lend themselves to adequate needle cleaning between
users. Rinsing with water may be used to keep the needle from clogging, but
this is not adequate protection against the AIDS virus. ‘.

4

The Response of Intravenous Drug Abusers to the AIDS Epidemic

Intravenous drug abusers in various parts of the country appear to be aware of
the AIDS epidemic. In some areas, such as New York City, addicts are
concerned about their risk for AIDS, and many are attempting to reduce their
risk. However, risk reduction fis not risk elimination. Risk reduction
efforts are frequently inadequate (e.g., reducing the number of people one
shares with, rinsing with water) or inconsistently applied (e.g., cleaning
needles some but not all of the time). In other areas, where relatively few
intravenous drug abusers have contracted AIDS, many intravenous drug abusers
are still denying their personal risk of acquiring AIDS, do not know how they
can protect themselves, and are not even reducing their risk.

It fs encouraging to note the concern among intravenous drug abusers in New
York City and the resulting behavioral changes, even though these changes are
not always totally effective. This experience provides hope for the

 

 
 

 

-4-

prevention of AIDS in this population. However, it is also apparent that a
massive prevention effort must be implemented immediately to significantly
impact on the spread of the AIDS epidemic. Needle sharing practices are well
established and serve both a practical and social function within addict
subcultures, and these practices will not be modified without substantial

efforts.
AIDS Prevention

While other presenters will focus specifically on risk reduction, I would like
to briefly touch on several issues related to preventing the spread of HIV
infection through needle sharing.

Certainly, the most effective way to prevent the spread of AIDS among
intravenous drug abusers is for abusers to stop using drugs. As long as
individuals continue to inject drugs, it is likely that many will continue to
Share needles. Therefore, high priority must be given to helping addicts
discontinue their drug use. Drug abuse treatment has been demonstrated to be
an effective means to accomplish this goal. Since drug abuse treatment
programs across the U.S. are over-subscribed, it is important that the
treatment capacity be rapidly expanded to make treatment readily available to
all intravenous drug abusers who can be convinced to participate. Outreach
programs must also be expanded to encourage intravenous drug abusers to enter
drug abuse treatment.

While helping addicts to quit using drugs must be our ultimate goal, many
intravenous drug abusers will be unwilling to enter drug abuse treatment and
will continue to inject drugs. Some users who enter treatment will
subsequently relapse and return to drug use. An effective AIDS prevention
strategy must, therefore, go beyond a focus on drug abuse treatment alone. We
must help those individuals who continue to inject drugs reduce their risk for
‘contracting or transmitting the AIDS virus.

Information is the basis for AIDS prevention. Intravenous drug abusers must
be provided with accurate information regarding their personal risk of
contracting AIDS, how the virus is transmitted, and how they may reduce their
risk. Changing the behavior of intravenous drug abusers is admittedly going
to be difficult. Historically, they have been resistant to behavior-change
efforts. As a group, intravenous drug abusers tend to be underemployed and
poorly educated individuals who are socially and economically disenfranchised
and show high prevalence of both criminality and psychopathology. To be
effective, the information must be delivered by someone who jis credible to
this audience. The educational messages must be provided in graphic "street"
language that is understood by and meaningful to the target audiences. Of
special concern are the potential effects of "a little knowledge."
Individuals who are taking less-than-adequate precautions may consider
themselves safe while unwittingly exposing themselves and others to HIV
infection.

While intravenous drug abusers who continue to inject must be encouraged not
to share needles, we must recognize that needle sharing will continue as long

 
 

 

|

-5-

as sterile injection equipment is in short supply or is not readily accessible
when addicts are ready to inject. AIDS prevention efforts must, therefore,
provide addicts with information on how they can conveniently clean their
injection equipment to reduce the risk of HIV transmission. Household bleach
and alcohol are two agents that can be used for this purpose. AIDS prevention
projects that provide clear and explicit information on needle cleaning
through aggressive outreach should be implemented widely to reach as many
intravenous drug abusers as possible. .

Since lack of available sterile needles and syringes is a major factor
promoting needle sharing, a number of public health and drug abuse experts
have suggested that sterile needles and syringes should be made more readily
available to intravenous drug abusers to decrease the need for needle
sharing. The National Academy of Sciences' Committee on a National Strategy
for AIDS recommended: "Efforts to reduce sharing of injection equipment
should include experimenting with removing legal barriers to the sale and
possession of sterile, disposable needles and syringes." (Institute of
Medicine, 1986, p. 112) Participants at a recent NIDA conference on needle
sharing among intravenous drug abusers identified the need to reassess public
policies that limit availability, including relaxation of restrictions on the

sales and possession of injection equipment.

While one possible approach to increasing the availability of sterile ,
injection equipment is to remove restrictions on their sales or possession,
another approach that some experts have advocated is to distribute free
sterile needles and syringes to intravenous drug abusers. Such distribution
programs have been implemented in Amsterdam, the Netherlands, in 1984, and in
the United Kingdom more recently. These distribution programs, referred to as
needle exchange programs, provide intravenous drug abusers with sterile
needles 10 exchange for used needles, thereby controlling the overall supply

of needles.

While advocates point out that the urgency of the AIDS epidemic requires
action, opponents to such programs are concerned that the distribution of
needles gives intravenous drug abusers a "mixed" message that continued drug
abuse is acceptable, a message that conflicts with the basic public health
message that people should not abuse drugs. Opponents are also concerned that
greater availability of needles may facilitate initiation of intravenous drug
use among drug abusers who are not yet injecting drugs. Participants at
NIDA's conference on needle sharing generally considered the needle exchange
approach to be promising and, considering the gravity of the AIDS epidemic,
worthy of exploration in the U.S. Given the uncertainty of program impact,
however, they recommended that any efforts to provide drug abusers with
sterile needles should be undertaken on a pilot basis, with careful evaluation
of program effects on drug use and needle sharing.

 

Simply focusing on the issue of needle availability is too simplistic. For
example, intravenous drug abusers in Italy share injection equipment
extensively, even though sterile needles are readily available. As I noted
earlier, social factors also influence needle sharing practices. Thus,

 
 

DO
-6-

efforts to change social patterns are also important, and information on AIDS
is an important part of efforts to change established behavioral patterns.

Research Directions

In my remarks, I have identified programmatic initiatives to combat the spread
of HIV infection among intravenous drug abusers. Ideally, the effectiveness
of prevention strategies should be thoroughly documented through controlled
research studies before they are widely implemented. Given the gravity of the
AIDS epidemic, program implementation cannot await research results. However,
concurrent research is needed to improve the effectiveness of future
prevention and education efforts. Priorities for research should include
efforts to improve the recruitment of intravenous drug abusers into treatment
and to enhance the effectiveness of drug abuse treatment. Research on other
behavioral change strategies, including the adoption of needle cleaning
practices, should also be a priority. In addition to research focused on
behavior change, research is also needed to further our understanding of
factors that contribute to needle sharing and other health-compromising
behaviors among intravenous drug abusers.

Summary

In summary, I wish to emphasize the urgency of the AIDS epidemic among _?
intravenous drug abusers. A massive effort is needed now to prevent further
spread of the disease. The prevention of AIDS requires a multi-pronged
approach to reach intravenous drug abusers with various motivations for
behavior change:

0 Communities across the U.S. should implement quickly programs to
educate addicts regarding their risk for AIDS and how they may reduce
their risk. Aggressive outreach is a key educational tool.

0 Drug abuse treatment is an important means of combating the AIDS
epidemic among intravenous drug abusers who wish to quit using drugs
and are willing to enter treatment. Resources need to be expanded so
that drug abuse treatment is readily available.

0 Since a substantial number of intravenous drug abusers will] continue
to inject drugs, an effective AIDS prevention strategy must encourage
these individuals not to share injection equipment and provide clear
and explicit information on how they may clean their injection
equipment to decrease the likelihood of HIV transmission if they
continue to share.

 

0 Research is needed to improve the effectiveness of our AIDS
prevention initiatives.

 
 

 

Testimony for the Presidential Commission on the

Human Immunodeficiency Virus Epidemic

presented by

Don C. Des Jarlais, Ph.D.

Coordinator for AIDS Research,

New York State Division of Substance Abuse Services

January 17, 1987

 

 
 

 

| would first like to thank the members and staff of the Commission for this opportunity to
testify. AIDS is the most important public health problem of our times, and unless we develop
successful strategies for limiting the spread of the human immunodeficiency virus, the causative
agent of AIDS, it will be an even greater problem for future generations. Intravenous drug users
will play a critical role in the epidemic. They are the second largest group of persons to have
developed AIDS in the United States and in Europe, and they are the primary source for both
heterosexual and perinatal transmission of AIDS in the United States and Europe.

| would also like to acknowledge the efforts of my colleagues at Narcotic and Drug
Research, Inc., New York University Medical Center, Beth Israel Medical Center and the New
York City Department of Health for their tireless collaboration in the research that forms the
basis of my testimony. Additionally, | would like to acknowledge the support of the National
Institute on Drug Abuse which has been the primary source of financial support for this
research.

A research article detailing recent findings in the field of AIDS and intravenous drug use
has been presented to the Commission staff, so that | will use this testimony only to give an
overview of the of the current situation. Many of the recent finding are the opposite of previous
"common sense” beliefs about intravenous drug use.

1. In the absence of awareness of AIDS and prevention efforts, HIV can spread very rapidly
among intravenous drug users once it has been introduced into a geographic area. Studies from
Manhattan, Scotland, and Italy show that HIV infection rates can reach forty percent within three
or four years after the first indications of infection are seen. Two behavioral factors, high
frequencies of drug injection and the sharing of injection equipment across friendship groups,
have been associated with this rapid spread. Identification of these factors associated with rapid
spread provides a basis for designing prevention programs.

2

 
 

2. As bad as AIDS is as an outcome of HIV infection, there is considerable evidence that the
virus causes a wide variety of other fatal diseases among drug users in addition to AIDS. Recent
trends in deaths among IV drug users in New York Suggest that the number of HIV related deaths
among IV drug users may be two and a half times the number of deaths due to surveillance
definition AIDS.

3. Contrary to some expectations, many IV drug users are changing their behavior in
order to reduce their chances of developing AIDS. There is consistent evidence on these behavior
changes from New York, New Jersey, San Francisco and Amsterdam. The risk reduction efforts
include increased use of sterile injection equipment and increased entry into treatment to reduce
drug use. Again contrary to expectations, efforts to provide “safer” forms for drug injection and
efforts to provide additional treatment to reduce drug injection appear complementary rather
than contradictory. It appears that both of these methods will be needed to control the spread of
the virus among IV drug users, and that these two Strategies complement rather than contradict

each other.

 

 
 

 

r

PRESIDENTIAL: COMMISSION ON THE

/ HUMAN IMMUNODEFICIENCY VIRUS, EPIDEMIC
\ . “y 17 s Lon, . .

’ *

t
é

TESTIMONY: MODES OF TRANSMISSION —- NEEDLE SHARING

4

LAWRENCE S. BROWN, JR., MD, MPH

SEPTEMBER =5, 1387

MR. CHAIRMAN, I WANT 10 OFFER MY SINCEREST GRATITUDE FOR THE
OFPFORTUNITY TO DISCUSS WITH YOU AND THE OTHER COMMISSIONERS A
PHENOMENON THAT GREATLY THREATENS THE NEARLY EVERY FARRIC OF THE
SOCIETY. 1 SERVE AS. THE VICE PRESIDENT FOR RESEARCH AND MEDICAL
AFFAIRS OF ‘HE ADDICTION RESEARCH AND TREATMENT CORFORATION (ARTC),
AN ORGANIZATION THAT HAS PRIDED ITSELF IN SERVING THE HARD-CORE,
LOWER SOCIOECONOMIC, AND FREDOMINATELY BLACK AND HISPANIC ADDICTED
SINCE 1969. as A NOT-FOR-PROFIT, MINORITY OPERATED ORGANIZATION,
ARTC HAS FPROVIDED A WIDE RANGE OF COMPREHENSIVE HEALTH CARE AND
TREATMENT SERVICES TO WELL OVER 20,000 PATIENTS SINCE ITS FOUNDING.
CURRENTLY ARTC SERVES a 2100 FATIENT POPULATION IN SIX TREATMENT
CLINICS IN BROOKLYN AND MANHATTAN. THE AIDS EFIDEMIC HAS HAD
ASTOUNDING EFFECTS ON THE HEALTH CARE AND SOCIAL WELL-BEING OF THE
PATIENTS, THE RECRUITMENT AND EFFICACY OF TREATMENT STAFF AND THE
RESOURCES IN THE URBAN CENTERS IN WHICH THESE FACILITIES RESIDE AND

IN WHICH DRUG ABUSE FPROMULGATES.

 

 
 

 

THE FACT THAT THIS SECTION OF YOUR HEARINGS ARE DEDICATED TO NEEDLE
SHARING IS A TESTIMONY TO YOUR CONCERN OF THE FIIVOTAL ROLE THAT
INTRAVENOUS DRUG ABUSE FLAYS IN AIDS AND HIV INFECTION AMONG
HETEROSEXUAL MEN, WOMEN, CHILDREN AND’ ETHNIC/RACIAL MINORITIES.
WHILE MY COMMENTS WILL, IN THE MAIN, BE FOCUSED UPON THE EXTENT OF
NEEDLE SHARING AND THE RESFONSES PRESENTLY OFFERRED AND PROPOSED TO
REDUCING HIV TRANSMISSION THROUGH THIS COMMONLY PRACTICED CUSTOM
AMONG FIARENTERAL DRUG ABUSERS, I WOULD ALSO LIKE TO OFFER You SOME
ADDITIONAL EVIDENCE ABOUT THE EFFICACY OF TREATMENT AND SOME THOUGHTS
ABOUT SOME ADDITIONAL MERITS OF EXFANDING THE SCOPE OF WHAT IS

CURRENTLY THOUGH? AS DRUG TREATMENT.

THAT DRUG TREATMENT ENROLLMENT TRULY REF'RESENTS THIS FOTENTIAL HAS
BEEN DEMONSTRATED IN #& COLLABORATIVE STUDY BETWEEN ARTC AND THE
ADDICTION RESEARCH CENTER/NATIONAL INSTITUTE ON DRUG ABUSE. OF THE
NEARLY SOO PATIENTS WHO FARTICIPATED AND RECEIVED EXTENSIVE FRE-TEST
AND FOST-TEST COUNSELING, THOSE PERSONS WHO TESTED POSITIVE FOR THE
VIRUS HAD A STATISTICALLY SIGNIFICANT SHORTER ENROLLMENT IN OUR
FROGRAM THAN THOSE WHO TESTED NEGATIVE. WHILE THIS FINDING MAY BE
SUGGESTIVE OF A POSITIVE ROLE OF TREATMENT, ONE CAN NOT CONCLUDE THAT
BY JUST OPENING MORE FOSITIONS, OUR PROBLEMS WITH AIDS ARE RESOLVED.
IN THE AIDS EFIDEMIC ERA, QUALITY IS EQUALLY IMPORTANT. FOR AN
EXAMPLE OF THIS, ONE NEED BUT LOOK TO NEW YORK AND THE RESFONSE OF
ITS SINGLE STATE AGENCY. WHILE THIS AGENCY AGGRESSIVELY ENCOURAGED
TREATMENT FROGRAMS WITHIN THE STATE TO EXPAND, IT DID LITTLE TO
FROVIDE FROFORTIONATE RESOURCES FOR THE WIDE ARRAY OF MEDICAL AND

F'SYCHOSOCIAL CONSEQUENCES ASSOCIATED WITH THE HIV-INFECTED

 
 

 

INTRAVENOUS DRUG ABUSER. THE PROBLEMS OF THE DRUG ADDICTED SUFFERING
FROM AIDS OR A RELATED DISORDER IS MANY TIMES THOSE OF THE
NON-INFECTED. IT HAS ALWAYS AMAZED ME, AS A HEALTH PRACTITIONER, WHY
OUR HEALTH CARE SYSTEM IS NOT RECEPTIVE TO IMPROVE THE LEVEL OF
PRIMARY MEDICAL CARE IN DRUG TREATMENT PROGRAMS, AT LEAST AS A MEANS
OF EARLY RECOGNITION OF HIV-RELATED CONSEQUENCES (AND HOPEFULLY EARLY
INTERVENTION), HUT IS WILLING T0 INVEST IN EXPENSIVE TERTIARY CARE
SERVICES, THAT ARE EITHER NOT AVAILABLE FOR THIS POFULATION OR OF
LITILE UTILITY BY THE TIME DRUG ABUSERS FRESENT THEMSELVES FOR
HOSPITALIZATION. A PERFECT EXAMPLE OF THIS IS THE CONCURRENT RISE IN
TUHERCULOSIS AND AIDS IN INTRAVENOUS DRUG ABUSERS (IVDAS) AND THE
COMMUNITIES IN WHICH THEY LIVE. WHILE HIV INFECTION IS NOT CASUALLY
TRANSMITTED, TUBERCULOSIS INFECTION IS NOT THAT LIMITED. IN FACT,
BASED UPON COMMUNICATION WITH THE NEW YORK CITY DEPARTMENT OF HEALTH,
A LARGE NUMBER OF TUBERCULOUS INFECTED FATIENTS WITH WHOM THEY HAVE
LOST CONTACT, ARE IVDAS, SOME CURRENTLY ENROLLED IN DRUG TREATMENT.
BUT BECAUSE OF THE LIMITATIONS PLACED UFON TREATMENT FROGRAMS,
PROPHYLACTIC TREATMENT IS UNAVAILABLE. THIS IS BUT ANOTHER
INTERVENTION THAT IS IN THE INTEREST OF PUBLIC HEALTH OF THIS COUNTRY
AND WILL ALSO SAVE VALUABLE HEALTH CARE DOLLARS BY AVOIDING COSTLY

HOSFITALIZATION.

LET ME MAKE IT ABUNDANTLY CLEAR. I AM NOT AGAINST HIGHLY TECHNOLO-
GICAL HEALTH CARE. QUITE THE CONTRARY, AS THE ATTENDING PHYSICIAN ON
ONE OF THE MEDICAL WARDS OF HARLEM HOSPITAL RECENTLY, I COMPLAINED
BITTERLY ABOUT THE LIMITED AVAILABILITY OF INTENSIVE CARE UNIT BEDS,

RESULTING IN THE MANAGEMENT OF PATIENTS REQUIRING RESFIRATORY SUPPORT

 
 

 

ON UNDERSTAFFED GENERAL MEDICAL WARDS. ONE THIRD OF my THIRTY-FIVE
PATIENTS WERE HOSPITALIZED DUE TO AIDS-RELATED DISORDERS AND NEARLY
ALL OF THOSE WITH AIDS-RELATED ILLNESSES HAVE HISTORIES OF
INTRAVENOUS DRUG USE. YET, AGAIN THIS APPEARS TO BE THE LEGACY OF

THE TREATMENT OF THE ADDICTED.
\
RETURNING TO THE ISSUE OF NEEDLE SHARING, WE HAVE ALSO DISCOVERED
THAT THE FRACTICE OF NEEDLE SHARING MAY ALSO HAVE SOME SIGNIFICANCE
FOR HIV) TRANSMISSION FROM IVDAS TO THE GENERAL COMMUNITY. INQUIRING
ABOU: THE NUMBER OF SEx PARTNERS FROM 1977-1985 UF APPRUAIMATELY 100
IVDAS, WE NOTED THAT THE MALES WERE MORE LIKELY THAN THE FEMALES TO
HAVE SEX FARTNERS WHU WERE NOT DRUG ABUSERS. FEMALES WERE SIGNIFI-
CANTLY MORE LIKELY 16 RECOME EXPOSED TO THE HIV VIRUS THROUGH THEIR
OWN IV DRUG USE AND SEXUAL TRANSMISSION FROM @ IVDA MATE. WHEN WE
EVALUATED EACH SEX SEPARATELY, WE NOTICED THAT SHARING NEEDLES DID
NOT CHANGE THE PROPENSITY FOR MALE IVDAS TO HAVE A NON-IVDA SEX
PARTNER. IN CONTRAST, NEEDLE-SHARING FEMALE IVDAS WERE SIGNIFICANLTY
MORE LIKELY THAN THEIR NON-NEEDLE SHARING FEMALE COUNTERPARTS TO HAVE
SEX FARTNERS WHO WERE IVDAS. THIS SUGGESTS THAT NEEDLE~SHARING HAS A
GREATER RISK OF PARENTERAL AND SEXUAL TRANSMISSION FOR FEMALE IVDAS
AS COMPARED TO MALES. GIVEN THE FROSFECTS FOR PERINATAL TRANSMISSION
OF HIV INFECTION, EFFECTIVE RESFONSES TO NEEDLE-SHARING ARE

2

FARAMOUNT.

A NUMBER OF FROFOSALS BESIDES TREATMENT EXFPANISON HAVE KEEN OFFERED
AS RESFUNSES TO INTRAVENOUS DRUG ABUSE-ASSOCIATED HIV TRANSMISSION.

THESE INCLUDE FROM NEEDLE STERILIZATION FROGRAMS USING BLEACH TO

 

 

 
 

NEEDLE EXCHANGE FROJECTS. WHILE I SALUTE THE INTENTIONS OF MANY OF
THESE EFFORTS, THERE ARE A NUMBER OF CAVEATS. FOR ONE THE NEEDLE AND
SYRINGE ARE NOT THE ONLY INSTRUMENTS INVOLVED IN IV DRUG USE THAT CAN
BECOME CONTAMINATED WITH THE HIV VIRUS. THE COOKER, WHICH IS
COMMUNLY USED AND SHARED CAN ALSO CONTAIN INFECTIOUS MATERIAL ALONG
WITH ANY SEDIMENTS OF UNUSED DRUGS. FURTHER, IT SHOULD BE UNDERSTOOD
THAT NOT ALL IVDAS WILL RECEIVE SIMILAR BENEFIT FROM THESE SUGGESTED
INTERVENTIONS. FOR EXAMPLE, IN ANOTHER COLLABORATIVE STUDY WITH THE
N@TLONAL INSTITUTES ON DRUG ABUSE WE FOUND THAI, CUNTROLLING FOR
INJELTION FREQUENCY AND INJELTION SETTING, SHARING NEEDLES COULD NOT
EXPLAIN THE GREATER PREVALENCE OF HIV INFECTION EXPERIENCED BY BLACK
AND HISPANIC 1VDAS, AS COMPARED 10 WHITES. EVEN SO, GIVEN THE
RAVAGES OF THIS EF IDEMIC AND THE POTENTIAL BRIDGE THA) INFECTED IVDAS
MAY FLAr IN EXPANDING THIS DISORDER TO OTHER FORTIONS OF SOCIETY, IT
IS MY HELIEF THAI ALL FROFOSALS DESERVE ADEQUATE DISCUSSION AND
DEBATE. WE MUST, HOWEVER, BE MINDFUL THAT THIS DISCUSSION, WHILE
EXTREMELY SENSITIVE TO ALL THE MEDICAL, LEGAL, SOCIECONOMIC, AND
PUBLIC HEALTH CONSEQUENCES, MUST BE FIRMLY BASED IN SCIENTIFIC AND

EPIDEMIOLOGIC EVIDENCE.

GIVEN THIS LITANY OF PROBLEMS, LET ME OFFER A FEW INGREDIENTS THAT
MAY BE USEFUL IN A RATIONALE RESPONSE. FIRST, LET ME SAY THAT DRUG
ABUSERS ARE CAPABLE OF CHANGE. EASED ON A NUMBER OF SURVEYS, MANY
HAVE RECEIVED THE MESSAGE. A VERY LARGE NUMBER CLAIM THAT THEY NO
LONGER SHARE NEEDLES AND A SURF'RISING PROPORTION CLAIM TO EVEN USE
SOME FORM OF LIQUID 10 CLEAN THEIR NEEDLES FRIOR TO USE. THUS, WE

SORELY NEED MORE MESSENGERS AND MORE MESSAGES. THE MLSSAGES SHOULD

 

 
 

 

BE WELL FOUNDED IN SCIENCE AND SHOULD BE CULTURALLY-SENSITIVE. AS
FOR THE MESSENGERS, TELEVISION, NEWSPAPERS AND PAMPHLETS ARE
INSUFFICIENT VEHICLES OF COMMUNICATION FOR THE DRUG ADDICTED. THERE
IS A NEED FOR @A CADRE OF FOOT SOLDIERS TO GET OUT AND DELIVER THE
WORD. FOR DRUG TREATMENT F'ROGRAMS TO ATTRACT AND RETAIN INDIVIDUALS
IN TREATMENT, THERE 1S @ CONSIDERABLE NEED FOR AN IMPROVEMENT IN THE
QUALITY OF SERVICES. WHEN ONE COMPARES THE EXTERIORS OF DRUG
TREATMENT FROGRAMS IN MANY UREAN SETTINGS WITH THAT OF OTHER TYPES OF
HEALTH CARE FACILITIES, IT IS NG WONDER WHY DRUG ABUSERS ARE NOT
ENCUURHGED TO ATTEND. NEEDLE STERILIZATION FROGRAMS SHOULD BE
EXMLORED WITH [HE UNDERSTANDING OF THEIR POTENTIAL ADVANTAGES AAND
LIMITATIONS. ADEQUATE MECHANISMS OF EVALUATION ARE CRUCIAL TO THEIR
EVALUATION. FINALLY, THE QUALITY OF FRIMARY MEDICAL SERVICES MUST BE
ENHANCED IN DRUG TREATMENT PROGRAMS IF WE ARE SERIGUS ABOUT IMPEDING
THE FROGRESSIGN OF HIV RELATED CONSEQUENCES OR AEGUT EARLY
INTERVENTION FRIOR TO GREATER MORBIDITY AND MORTALITY TO THE DRUG
USER OR AS IN THE CASE oF TUBERCULOSIS TO THE COMMUNITIES IN WHICH

INTRAVENOUS DRUG USE IS ABUNDANT.

AGAIN, MR CHAIRMAN I THANK You FOR HAVING PROVIDED ME WITH OFPOR-
TUNITY YO SHARE WIIH yoy SOME OF THE THOUGHTS AND CONCERNS OF MY
CULLEAGUES AND STAFF AKOUT THEIR ABILITY 10 RESPOND TO THIS
DEVASTATING EFIDEMIC AND MOST IMPORTANTLY, ABOUT THE SIGNIFICANTLY

UNMET NEEDS OF THE DRUG ADDICTED AND OUR COMMUNITIES.

 
 

 

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lame Ten snc women ceracet rat ccoen TT.) FTF Te prtered 4 ro 4gt
wns- trey fee! more fecual (ever (fF see "2 Fe UR: FE DRPE UE oF Oe
mm Tele eeosetere tee thar tee. cave Gi 2 ITs iam Gee are
fcrug Gut om orugaz. sls irug are : raha sEe7 EB 2Th Ni eoDe TUE
4e/ sre BFS met ned te omit theo Fe UR BET TBE OS zato7 26
guide.rimee winger they ere moog si teres
PEEPS Cree eee eee
Where: r Some Fetusi Mm marities who are ii mreue were I IEF

dent ¢- wits qgay futcurtusss, Tanne tie mot Tost. Zernqity Tore
elesere wits “rus subcultures. Therefore ailfS ourrescnm anc souret'
error ce a1 72 st I\! grug vger: ™uEt oe zene: tive ta 174 PRS, Te IF:
eruc euccultures are not ont. & Srai;etic rm terme O° Denver. "Fle,
C1sSE. Qe, SN FoCial-ecaramic Etatus, Tut alec os terme mr fe cuk!
ereiencatiant, oreterenres., att wuces. Frc remanrars.

Go emsil sercentage of cur lamtsecte Tare Deen women id FP &
-Senti¢yv tnemesives 2e 'eOrene ar aigevuarz and are oPegqived 15
areetotution witn men anagver sre i grug were. “an, (enh ens
speretve themse "ee to Tat ce at ciew Becuse or Ther 22 We,
srpentation ar primary Tet atromer es Wit 8 MIOMmAn mm Bray thse
number oe lesbian or Bi sexuar oTen are clazeted Tl TT esr eerste of
maie curtmer tuat tnev are on tw. tiole reiat amsa ce. are CUNO ED
prostitution, or fre aruc users. Thus, RAIDS ecucetian Tetssqges MET
aleo se addressed to fumcuituress a? Csetian ama Brse ual Comer.

FET AMMEr GAT aE
1. That renaoilitation’drug treatment srograms mare sqgrets. 08° -
ascoress G1DS education tor ciients and their zion ficant otmers
&. That HIV testing not be pushed oy drug treatment orograms out oe
offered a6 an ception for clients and their zranificant athers aniv |
ore and post HIV antibody counseling programs are th olace.,
3, That rehabrlitationscrug treatment oroarams more sqgressivelyv
address human sexuality i1¢sues for cients and the:r Ssrqgnificant
athers. Such eaucation focus on human sexuality snoula aim to be
value neutral and address not oniy heterosexual behavic

relationships. and life but

and transgender.

etyles,

4, That GIDS education sregrams aimed at IVDU not

that nationally SH

S. That more education programe and and services be

women and vouth and minorities.

o. That community Ta¢ea soencie?® be encsursgec ane
teaimerg, techricel seeigtance. ena ecundisg tO sg0r%
eIDS anc sLretance sfuse.

aleo nomaocexualitr,

ef persons agiagnased with AILS are
men and that IVDU is Know to be a gart af the leztbran

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Ce Ceat “seal rommunit, verecsute se encoursaed co supzor- 4il:
PURE UST em F+eOrte Ge Mae imnG ees: atie tl custeters ‘ne cao 2 seecer
SO arevent tne toanemiszicn re allee-iste tasaere, weter cased
Vdbricarnte, tistci. wee.
SB. Tet ‘egrsleticn mach mow meee 0 2 crime to ze in tossezz,en oF
BPG Harsnnerns! 2 ne recensiderea in iront ot sur eoucatioan mestece
‘Gon’ t sare ciorss" anc our mesninagisss wezeace cor sadicte, “suse eae
Tro."
Fe TOT Tarsstor, wil esqucatiin set TeeEtings avegrame re
‘MOorementeg not oni. in gruq trestmenn orosramt, Sut s.eg 09
trearcersated eettings, lv sTo settings, and si: atner
mmSstitutionslizec eetrings,
10. That alos equcatian arosrime a ace etrancer emo-seiz an
corr actors of & cotat. Tethscane. sna atner crucze in terre of tne rv
ImMoaCt oF the immune =-stem.
Pl. “ust aift sauestecn ascoocrsme otsee ftrarncer emorze = an Der sors
Draqgnczed se Frving a th ei) vateetisn wns are nore 142... £2 3
PMO our ve vel ah 8 Geer occk-, Baste Thin cerzcss cy ee 1th ws arscncere
af af 0s,
“he gnove castitone :z thet of a. 2 lie 3. Tere, a texity 2ducste7
vuth the Sunmve irermen alflS Eoucec sn Srorect s+ the ahi tMegw oa . or
Slinic. ‘4r, Jones current’ v ccorainates “IS? equest.on Trtarems sor
Peearcsrarveg ectu ations snag versivs in Grug ceeetrent actcarame +7 che
sletrict of Columtis and fine clorctnern Mirgitais Tountise., Cones siza
facilitates support sroune +or recovering acqicts wha sre Hi oat tine
anc for e--of Gers wre are ATTY oosttive., Friar nis currens

m r

a
position. Jo Sevelopeg and co-directed Whitman-idalker Ciinic’s
street outre oroject wnich targeted male and female prostitutes,
tranepersons, and IVDU not in treatment.

AS a volunteer, Jones has worked with Whiman-Walker Clinie’s SIDS
Information Line, HIV antibody counseling services, and the Buacdy
oroogr am.

The comments end recommendations in this testimony are NOT thoze as
the Whitman-Walker Clinic, but solely thoce of the presenter. A. Bili-v
S. Jones. Conclusions were made from the Oratt baseline eurvey data
conducted for the D. C. Commission of Public Health ¢or the Distriet
of Columbia (May, 1937) ang 15 months of dara compiled by the street
Cutreach workers of the Whitman-Walker Clinic ‘Wevember, i787),

 

DRAFT DRAFT DRAFT CRAFT > 4 FO

 
 

Eds: ‘Schinazi Kr, Nanmias. AJ
Pub: Elsevier North Holland Inc.

1987 in press .
HUMAN IMMUNODEFICIENCY VIRUS INFECTION IN WOMEN

CONSTANCE B.WOFSY ~
University of California San Francisco, San Francisco Hospital.

Worldwide. women constitute a significant percent of HIV infected individuals. In Africa, about
half of those infected are women; in Haiti one quarter or more of those infected are women.
By contrast. in the United States, women accounted for only 6.7% of all AIDS cases. Fifty-one
percent of the affected women are Black and 20% are Hispanic; 52% are intravenous drug
users, and 21% became infected through sexual contact with infected men; 67% of these
men were IV drug users and 16% of the sexual partners were bisexual men. Seventy-nine
percent of women with AIDS are 13-39 years of age and within their childbearing years (1).
This is a special concern as regards AIDS in children. Eighty percent of pediatric AIDS cases
can be traced to mothers who are infected (2).

How can we use this information to prevent further infection in women and children and to
anticipate treatment needs? To begin, accurate information about AIDS transmission and
prevention must be focused on the women at greatest risk - Black and Hispanic women —
and on their sex partners. Unfortunately, efforts to avoid stigmatizing these groups have
contributed to denial of their particular risk. National magazines, when dramatizing the risk of
heterosexual transmission of AIDS, feature cover photographs of white teenagers, white
women, and white couples and support the misimpression that AIDS in heterosexuals is a
white disease, just as previous reports conveyed the false impression that AIDS is a gay
Gisease.+ The evolving epidemiologic pattern of human immunodeficiency virus (H!V)
infection and AIDS makes it clear that all segments of our population are at risk.

Providing appropriate education to women and men who use IV drugs poses a particularly
challenging problem. Only a small percentage can be reached through treatment programs.
Many are poorly educated and have little medical knowledge, and the potential future danger
of AIDS is less compelling than the day to day problems of poverty and drug use. Therefore,
to reach IV drug use’s, a large network must be used, including other drug users, their peers,
their community, health clinics, schools, jails, music, and video. The messages should be di-
rect, preferably visval, and they should not moralize about drug uSe or use scare tactics.
Rather, they should include constructive suggestiqns to maintain health, emphasizing practi-
cal considerations, such as the importance of clean needles or the proper use of bleach as a
cisinfectant, in addition to the loftier goa! of abstinence.

To date, women have received more attention for their potential role as infectors than for the
problems they face as infectees. Headlines such as “Nursing Mother Gives Baby AIDS” and
"Infected Hooker Spreads AIDS* contribute to the public perception of women as infectors.
This is consistent with the observation that 80% of children with AIDS are infected perinatally.
For this reason, pre ratal testing for HIV has been strongly recommended as a means of pre-
venting AIDS in children.

But will knowledge of antibody status necessarily prevent infected children? In anecdotal re-
ports, half or fewer of infected women who know early enough to abort choose to do so. In
our Own experience, one out of three infected women who could have aborted chooses todo |
so. Another study reported 16 mothers with infected children who subsequently had other
babies despite the knowledge that they were infected (4). Why might this be? Seropositive
women who feel well are often in a strong state of denial. For many, childbearing is a cultural
expectation and may be the primary goal of the individual's womanhood. Conception is not
necessarily a choice about which women have or take control, either because they do not

4

 

* This article was modified {rom a publication which appeared in J. Amer. Med. Assoc. 257: 2074-2076,
1987. Copyright 1987, American Medical Association.

+ This misapprehension has recently been corrected In a special issue of "The faces of AIDS”-
Newsweek, Auqust 1987 (Editors comments) .

 

 
 

 

they can become pregnant or because the wishes of their male Partner take precedence.

Although knowledge of HIV infection may not prevent all women from having children, many
women do not know they are infected when they are pregnant and therefore cannot make an
informed decision. Because many infected women do not choose to forego childbearing,
counseling in conjuncticn with testing should be readily available.

It is important to recegnize the issues that women themselves contron? as infectees in devel-
oping programs that address the problems associated with women as infectors. First, is a
profound sense of isolation. The infection is often kept secret, depriving desperately needed
support from family, friends, community, and Particularly from other infected women. Infected
women lack the sense of community that is enjoyed by gay men, at least in certain areas.
They still constitute a relatively small group and have little reason to know one another.
Second, is profound grief for the loss of health, body image, sexuality, and childbearing po-
tential. Means for sexual expression are limited, and disclosure of HIV infection to a new sex-
ual partner can be devastating. Third, women may be too sick to fulfill their responsibilities as
Parents; they may watch a child die and feel overwhelming guilt, and they may have to plan
for the welfare of surviving children atter their own death. Finally, in a disease that has thus far
affected preponderantly men, women may find it difficult to find primary care physicians, ob-
Sietricians, gynecologists, sex counselors, abortion counselors, and other health profession-
als who are educated in the issues that relate Specifically to women and who are sensitive to
their needs.

Even though women comprise only 7% of all AIDS cases in the United States, AIDS in
women is a very significant disease. AIDS was the leading cause of death in 1986 in women
aged 25-34 in New York City. Sixty-one percent of these women were IV drug users (3). The
Giagnosis and treatment of HIV-related infections in women pose special challenges, be-
Cause women nationwide are still a low risk population. Human immunodeficiency virus re-
lated symptoms such as fevers, weight loss, diarrhea, and cough are nonspecific and require
high index of suspicion to consider an HIV related cause. For IV drug users, the symptoms
may mimic other medical problems common to this population, for example, the presentation
of pneumocystis pneumonia may be identical to the respiratory presentation of bacterial en-
docarditis or cotton lung. Physicians may only suspect AIDS in women who are IV drug users
Or prostitutes and fail to diagnose AIDS in other women.

Virtually all women with HIV infection are heterosexual and thus have the potential for trans-
mission to a sexual partner. Twenty-one percent of women who now have AIDS got it via
Sexual transmission from infected men, and 28% of all men with AIDS are themselves het-
erosexual, thus placing their female partners at potential risk. These facts underscore impor-
tant issues concerning the prevention of heterosexually transmitted AIDS. All sexually active
women whose partners are not fully known to them are ata potential risk of infection (as are
all men in the same situation). Thus, both partners must recognize that the possibility of infec-
tion exists and act responsibly toward themselves and each other. As physicians and public
health officials, we also bear responsibility to help prevent transmission of HIV and must pro-
vide people with whatever information can help protect them and their sexual partners from -
exposure to HIV.

A large body of information is already known about heterosexual transmission that can be
Used In Counseling and prevention programs. The virus has been isolated from blood, se-
men, Cervical secretions, ‘and menstrual blood (5-7). Vaginal sex is the preponderant means
of heterosexual transmission. The risk of becoming infected after several years of unprotected
Sex with the same infected partner varies from 7-82% (8, 9). There is evidence that rectal in-
tercourse with a man known to be infected may enhance the probability of a woman becom-
ing infected (10). Vaginal transmission of HIV from woman to man (9, 11), and in one
instance from woman te woman (12), has been shown in several studies in the United States.
Therefore infected women must assume that they have the potential to transmit infection to
their partners. The relative efficiency of transfer in either direction is of sufficient academic In-
terest that it will probably not alter the basic approach to education, counseling, behavior
Modification.

 

 
 

Celibacy would most certainly prevent infection. In one study, couples who became celibate
after awareness of infection of one of the partners had a 0% seroconversion rate (9, 11).
However, celibacy is not realistic for many people. Limiting the number of partners is realistic,
and each woman should reassess her own sexual practice and number of partners. Women
should likewise explore means of sexual expression which do not involve exchange of bodily
secretions, and realize that sexuality and the sex act are not necessarily the same. For inci-
viduals who do choose to be sexuaily active, it is important to explore with each new sexual
partner how to minimize the risk of infection and openly discuss concerns about the possible
risks associated with exposure to sexual secretions. Partners may reduce their risk of HIV in-
fection by always using condoms during intercourse, whether vaginal, rectal, or oral. In the
laboratory, latex condoms have been shown to block passage of the virus across the condom
material (13), though natural skin condoms proved ineffective in preventing passage of virus
in one study (14). Thus, most experts recommend latex. Condoms are by no means foolproof,
however. The effectiveness of condoms in preventing pregnancy is about 90%, and in a study
of couples who used condoms after knowledge of one of the partners’ HIV seropositivity, 3 out
of 18, or 17% seroconverted despite the use of condoms over a mean follow-up of 18 months
(9). The usual cause of condom failure in contraception is that the condom comes off or
ruptures: the risk of rupture can be minimized by proper placement, retention, and removal of
the condom, and by use of water soluble lubricants rather than petroleum based lubricants.
While condoms are not foolproof, they do provide the safest insertive sex possible with an
HIV infected partner, particularly In conjunction with a virucidal spermicide, such as
nonoxynol-9. Medical practitioners will have to become familiar with a variety of condoms
available and their correct use (15). They will have to also become comfortable with dis-
cussing sexuality with their patients, providing reassurance that sexual expression is not only
possible, but can be highly enjoyable without the exchange of secretions, and be familiar with
resources available for sexual counseling of couples with discordant serologic status or in
whom the status of one partner is unknown.

In the United States, condom advertisements and safer sex guidelines have appeared in vir-
tually all magazines targeted at female audiences. Male directed advertising lags far behind.
Leading fashion and sports magazines for men have not featured condom advertisements.
The popular educational film for teenagers entitled “Sex, Drugs, and AIDS” shows girls in the
balfet locker room discussing how they approach getting their boyfriends to wear condoms,
but interestingly, the film does not depict a similar scene in the boy's locker room of boys dis-
cussing their use of condoms. A newer film produced by the American Red Cross, entitled "A
Letter from Brian®, targeted primarily at white and suburban teens, does very effectively
Incorporate the concept of dual responsibility and dual concern for teenage boys and girls in
the discussion of whether or not to engage in sex and whether to use a condom. it is no sur-
prise that women account for a large percent of condom sales, and that women have sought
full information on how they can best preserve their own health and the health of those with
whom they have sex or whom they give birth. But sex is a consentual act, both sexes are re-
sponsible. Advertising and peer role models must be directed at men, so they will get the
message and act on it as well.

A reduction in heterosexual! transmission of HIV will require easy access to HIV antibody test-
ing and counseling and behavior modification programs for the woman and her male partner.
The information provided must be highly specific in language familiar to the recipient, cultur-
ally integrated, and delivered by educators who are themselves at ease with sexual topics.

in absence of a vaccine or effective therapy for AIDS, behavioral change is the only defence
against the rapid spread of HIV. Fear will not lead to behavior modification. Carefully taught
programs for behavioral change may. However, pervading attitudes about “proper” moral
conduct prevent active discussion of issues of sexuality in schools, in churches, and on tele- .
vision. The Surgeon General has stated that education is the best means of affecting a re-
duction in the number of infected individuals. Many metropolitan cities are developing excel-
lent educational programs to be Incorporated in to schools at all levels. However, not all
schools, churches, communities, or all television networks have adopted the urgent need for
dissemination of information. We have reached the point where we must say that, for public
health reasons, it is immoral not to educate the maximal number of people, and this includes
education about sex. The so-called morality that prevents us from talking about sex, that pre-

 

 
 

 

vents us from telling about sex, that prevents condom advertisements on television, and
prevents adequate discussions of the public health risk in all of our schools has become
medically contraindicated.

REFERENCES

1.

2.
3.

10.

11.
12.
13.
14.
15.

Guinan ME, and Hardy, A. Epidemiology of AIDS in the United States: 1981 through
1986. J. Amer. Med. Assoc. 257:2039-2042, 1987.
Centers for Disease Control AIDS Weekly Surveillance Report, March 2, 1987.
Chiasson MA, Fleisher E., Petrus D, and Miller B. Epidemiologic characteristics of
women with AIDS in New York City. In: Abstracts of the Third International Conference on
AIDS; Washington D.C., June 1-5, 1987 pg 174.
Scott CB, Fisch! MA, Klimas N, et al. Mothers of infants with the acquired immunodefi-
ciency syndrome: evidence for both symptomatic and asymptomatic carriers. J. Amer.
Med. Assoc. 253:363-66, 1985.
Ho OD, Schooley AT, Rota TR, et al. HTLV-II in the semen and blood of a healthy homo-
Sexual man. Science 2226:451-53, 1984.
Wofsy CB, Cohen JB, Hauer LB, et al. Isolation of AIDS associated retrovirus from genital
Secretions of women with antibodies to the virus. Lancet I:527-29, 1986.
Vogt MW, Witt DJ, Craven DE, et al. Isolation patterns of human immunodeficiency virus
from cervical secretions during the menstrual cycie of women at risk for the acquired im-
munodeficiency syndrome. Ann Intern Med 106:380-82, 1987.
Van der Graaf M, and Diepersloot FJA. Transmission of human immunodeficiency virus
(HIV/HTLVIII/LAV): A review. Infection 14:203-11, 1986.
Fisch! MA, Dickinson GM, Segal A, Flanagan S, and Rodriguez M. Heterosexual! trans-
mission of human immunodeficiency virus (HIV): relationship of sexual practices to sero-
conversion. In: Abstracts of the Third International Conference on ‘AIDS, Washington,
D.C., June 1-5, 1987; pg 178.
Padian N, Wiley J, and Winkelstein W. Male to female transmission of human immuno-
deficiency virus (HIV): current results, infectivity rates, and San Francisco population
seroprevalence estimates. In: Abstract of the Third International Conference on AIDS.
Washington, D.C., June 1-5, 1987; pg 171.
Fisch! MA, Dickinson GM, Scott G8, et al. Evaluation of heterosexual! partners, children,
and household contacts of adults with AIDS. J. Amer. Med. Assoc., 257:640-44, 1987.
Marmor M, Weiss LRE, Lyden M, et al. Possible female to female transmission of human
immunodeficiency virus. Ann Intern Med, 105:969, 1986.
Conant M, Hardy D, Sarnatinger J, et al. Condoms prevent passage of AIDS-associated
retrovirus. J. Amer. Med. Assoc. 255:1706 1986.
Van de Perre, Jacobs D, and Sprecher-Goldberger S. The latex condom, an efficient
barrier against sexual transmission of AlDS-related viruses. AIDS 1: 49-52, 1987.
Goldsmith M. Medical News and Perspectives article. J. Amer. Med. Assoc., in press.

 

 

 
 

CURRENT RESEARCH ACTIVITIES
Constance B. Wofsy, M.D.
Asseciate Clinical Professor of Medicine
University of California, San Francisco
Co - Director, AIDS Activities
Assistant Chief, Infectious Disease
San Francisco General Hospital

Research focuses on two major areas:.

1)

2)

Treatment of opportunistic infections in AIDS: Studies completed
in the last several years as principal investigator or co-
investigator include a prospective comparative study of trimethoprim
sulfa versus pentamidine for treatment of first episode Pneumocystis
carinii pneumonia in AIDS followed by two open studies evaluating new
therapies for Pneumocystis in AIDS - specifically, the use of dapsone
plus trimethoprim and then dapsone alone for the treatment of first
episode Pneumocystis in AIDS. The ultimate goal of all these
treatment studies of Pneumocystis is to define the most effective,
least toxic, and most acceptable therapy for outpatient treatment.
Other studies recently completed or in the planning include treatment
of Mycobacterium avium intracellulare in AIDS, use of Spiramycin for
treatment of Cryptosporidium in AIDS (a double-blind, placeko
controlled study). The most recent study is a perspective double-
blind ‘comparison of trimethoprim sulfamethoxazole versus dapsone
trimethoprim orally for first episode of Pneumocystis in AIDS.

Funding for these studies comes through the UC Task Force on AIDS and
from a grant of the combined NIH FDA Orphan Drug Study progran.

Heterosexual transmission of AIDS: Dr. Wofsy is the principal
investigator of Project A.W.A.R.E. <- Association of Womens’ AIDS
Research and Education which was founded in mid-1985 for the study of
prevalence of AIDS antibody in heterosexually active women in San
Francisco. The study focuses on sexually active women including
prostitutes and non-prostitutes evaluating antibody status, sexual
habits, counseling, and response to education. From this initial
study enrolling 800 women, a prospective longitudinal study of
several cohorts will evaluate change in acquisition of AIDS antibody
over time, prevalence of AIDS antibody in prostitutes and associated
sexual habits. The cohorts of seropositive women and matched high
risk and low risk negative controls are being used for studies of
AIDS viral cultures in blood and cervical secretions, oral lesions in
women, HTLV-I as a cofactor in women, and transmission from seropos-
itive mothers to their infants in conjunction with the University of
California Department of Pediatrics and Immunology. A partners study
ef non-IV drug using partners of HIV positives is beginning in late
1987.

Funding for heterosexual transmission studies comes from the
University of California Task Force on AIDS and the Centers for
Disease Control and the National Institute of Health.

 

 
 

3)

 

CURRENT RESEARCH ACTIVITIES
Constance B. Wofsy, M.D.
Associate Clinical Professor of Medicine
University of California, San Francisco
Co - Director, AIDS Activities
Assistant Chief, Infectious Disease
San Francisco General Hospital

Physician education: Director of APEX - AIDS Provider Educational
Experience - an educational program for practicing physicians and
primary care providers covering lifestyle and social issues, treat-
ment of opportunistic infections and malignancies, administrative
organization of AIDS programs.

Teaching Responsibilities:

1)

2)

3)

1985 = 1987: As Associate Clinical Professor of Medicine teaching
responsibilities include: two half days a week in the San francisco
General Hospital AIDS Clinic providing primary care and consultaticn;
one half day a week in the Infectious Disease Clinic at San Francisco
General Hospital; Attending physician in Internal Medicine two
months per year, attending physician on Infectious Disease consult
service one month full-time attending and one month back-up
attending; grand rounds at assorted Bay Area hospitals approximately
once per month; didactic lectures to medical students, pharmacolosy
students, nursing students, and other groups in training
approximately one to four times per month; participation in national
academic meetings six to ten times per year and multiple community
educational programs including radio, television, teleconferences,
and teaching documentaries for various organizations, e.g., Bell
Telephone, Department of Public Health, Planned Parenthood, and
others.

1986-87 See 1 above

1987-86 See 1 above

 

 

 

 
 

 

SAN FRANCISCO EPIDEMIOLOGIC BULLETIN

CITY AND COUNTY OF SAN ER ANCISCO ¢ DEPARTMENT OF PUBLIC HE AITH © BUREAU OF COMMUNICABLE DISEASE CONTRO!

 

 

Vol.3, No.4

April 1987

 

Antibody to Human Immunodeficiency Virus in Female Prostitutes*

Seroprevalence surveys for antibody
to human immunodeficiency virus (HIV) in
women with histories of prostitution
have shown varying results since testing
began in 1984. In sub-Saharan Africa,
where HIV is thought to be transmitted
primarily through heterosexual exposure
(1-3), one (1%) of 98 prostitutes tested
in Accra, Ghana (4), to 29 (88%) of 33
prostitutes in Ngoma, Rwanda (5), had
HIV antibody (3-7). In Europe, where
hamosexual exposure and abuse of intra-
venous (IV) drugs are major risk factors
for HIV infection (8), none of 50 prosti-
tutes tested in London (9), none of 56
in Paris (10), and none of 399 in Nurem
berg, West Germany (11), had antibody to
HIV. However, 10 (71%) of 14 prostitutes
who abused IV drugs in Pordenone, Italy
(12), and 14 (78%) of 18 who abused IV
drugs in Zurich, Switzerland (13), were
infected. -Seventeen (1%) of nearly 2,000
-egistered prostitutes in six West Ger-
man cities were HIV-antibody positive;
half of these infected women abused IV
drugs (14).’ In Athens, Greece, 12 (6%)
of 200 registered prostitutes were HIV-
antibody positive; none abused IV drugs
(15).

As of March 10, 1987, 2,159 women in
the United States were reported to have
met the COC surveillance case definition
for AIDS. The cumulative incidence of
AIDS in black and Hispanic women was
more than 10 times that for white wamen
(16). Over 70% of these women reported
with AIDS resided in New York, New
Jersey, or Florida (17). Over half (51%)
had abused IV drugs; 27% were sexual
partners of men with AIDS or at risk for
AIDS; and 10% had received transfusions
of blood or blood products. No risk
factors have as yet been reported for
the remaining 12% (18).

To assess HIV-antibody prevalence and

determine risk factors in U.S. prostitutes,

COC is collaborating with others in an on-
oing, cross-sectional study of women who
nave engaged in prostitution in seven
geographic areas: Atlanta, Colorado

Springs, Las Vegas, Los Angeles, Miami,
Newark-Jersey City-Paterson, and San
Francisco. Same collaborators are recruit-
ing primarily incarcerated wamen (Los
Angeles and Miami). Others are recruiting
primarily through sexually transnitted
disease (SID) clinics (Colorado Springs
and Las Vegas); methadone maintenance
clinics (the three northern New Jersey
cities); or outreach efforts, such as
newspaper advertising, circulation of
pamphlets, and direct contacts on the
street (Atlanta and San Francisco). Study
participants are not necessarily repre-
sentative of all female prostitutes in
these areas.

For this study, prostitution is defined
as the exchange of physical-sexual ser-
vices for money or drugs. Any woman 218
years of age who has engaged in prostitu-
tion at least once since January 1, 1978,
is eligible. Participation entails volun-
tary, informed consent; names and other
personal identifiers are not recorded.
Participants are interviewed for their
medical histories and sexual and other ex-
posures. They are also examined for signs
of HIV infection and IV-drug abuse and are
asked to provide 10 ml of blood for sero-
logic testing. Serum is tested for HIV
antibody by enzyme immunoassay and Western
blot methods.

The analysis reported here has been re-
stricted to the 835 study participants who
were tested for HIV antibody and the 568
study participants for wham an interview
form was submitted to COC before March 10,
1987. The prevalence of HIV antibody in
prostitutes so far tends to parallel the
cumlative incidence of AIDS in women in
the seven research sites (Table 1), sug-
gesting that risk factors for AIDS in fe-
male prostitutes may be similar to those
in other wamen living in these geographic
areas. The prevalence of HIV antibody in
prostitutes and the cumlative incidence
of AIDS in women are highest in northern
New Jersey and Miami. In southern Nevada,
where only one woman has been reported
with AIDS, none of 34 prostitutes have

 

 

101 GROVE STREET, ROOM 402 ¢ SAN FRANCISCO, CALIFORNIA 94102 ¢ 415/558-4046

 
 

had HIV antibody.

In the seven areas, reported rates 6.
of AIDS were higher for black women
(359.6/1,000,000) and Hispanic wamen
(40.2/1,000,000) than for white (25.3/
1,000,000) and other (Asian and Native 7.
American) women (16.2/1,000,000).

Similarly, black and Hispanic prosti-

tutes in these areas had a higher pre-

valence of HIV antibody (15%) than 8.
white and other prostitutes (7%) (odds
ratio(QRJ=2.5;95% confidence interval

(C1 J=1.4-4.4). 9.

Half the prostitutes interviewed
in this multicenter collaborative study
gave histories of IV-drug abuse; 47
(76%) of 62 with antibody to HIV have 10.
injected drugs (OR=3.6;95% CI=2.0-6.7).

IV-drug abuse is associated with HIV

infection in prostitutes and with AIDS 11.
in women regardless of racial and

ethnic background (Table 2).

Over 80% of prostitutes interviewed
through January 1987 reported that at 12.
least one of their partners had used
@ condom. Husbands or boyfriends of
the respondents were much less likely
to use condoms during vaginal exposure 13.
than clients (16% as compared with
78%, p=0.005). Twenty-two (4%) prosti-
tutes reported condom use with each
vaginal exposure during the past 5
years. Eleven percent of 546 prosti- 14.
tutes with unprotected vaginal exposure
were HIV-antibody positive; none of 22
prostitutes whose partners always used

 

condoms were seropositive (p=0.10 after 15.
controlling for IV-drug abuse).
References
1. Brun-Vezenit F, Rouzioux C, Montag-
nier L, et al. Prevalence of anti- 16.

bodies to lymphadenopathy-associated
retrovirus in African patients with
AIDS. Science 1984;226: 453-6.
2. Piot P, Quinn TC, Taelman H, et al. 17.
Acquired inmumodeficiency syndrame
in a heterosexual population in
Zaire. Lancet 1984;2:65-9. 18.
3. Quim TC, Mann JM, Curran JW, Piot
P. AIDS in Africa; an epidemiologic
paradigm. Science 1986;234:955-63.
4. Neequaye AR, Neequaye J, Mingle JA,
Adjei DO. Preponderance of females
with AIDS in Ghana [Letter]. Lancet

 

12

Lancet 1985;2:524-7.

Kreiss JK, Loech D, Plummer FA, et
al. AIDS virus infection in Nairobi
prostitutes. N Eng] J Med 1986;314:
414-8.

Mann J, Quinn TC, Piot P, et al. Con-
dan use and HIV infection among prosti-
tutes in Zaire {Letter]. N Eng] J Med
1987;316:345.

COC. Update: acquired inmmodeficiency
syndrome-Europe. MMWR 1986;35:35-8,
43-6.

Barton SE, Underhill GS, Gilchrist C,
Jeffries DJ, Harris JRV. HILV-III
antibody in prostitutes [Letter].
Lancet 1985;2:1424.

Brenky-Faudeaux D, Fribourg-Blanc A.
HILV-III antibody in prostitutes
[Letter]. Lancet 1985;2:1424.

Smith GL, Snith KF. Lack of HIV in-
fection and condam use in licensed
prostitutes [Letter]. Lancet 1986;
2:1392.

Tirelli U, Vaccher E, Carbone A, De
Paoli P, Santini G, Monfardini S.
HILV-III antibody in prostitutes
[Letter]. Lancet 1985;2:1424.

Luthy R, Ledergerber B, Tauber M,
Siegenthaler W. Prevalence of HIV
antibodies among prostitutes in
Zurich, Switzerland. Klinische Woch-
enschrift (in press).

Schultz S, Milberg JA, Kristal AR,
Stoneburner RL. Female-to-male trans-
mission of HILV-III [Letter]. JAMA
1986; 255:1703-4.

Papaevangelou G, Roumeliotou-Kara-
yannis A, Kallinkos G, Papoutsakis G.
LAV/HTLV-III infection in female pros-
titutes [Letter]. Lancet 1985;2:1018.
COC. Acquired inmmodeficiency syn-
Grane (AIDS) among blacks and His-
panics-United States. MMWR 1986;35:
655-8 , 663-6.

COC. Update: acquired immmodeficiency
syndrome-United States. MMWR 1986;
35: 757-60, 765-6.

Lifson AR, Castro KG, Narkmas JP,
Lekatsas A, Ksell TE, Fox RS. "No
identified risk" cases of acquired
immmodeficiency syndrome. Paris:
Second International Conference on
AIDS, 1986.

1986;2:978. * Reprinted fran MMWR 1987 March 27; 36

53. Van de Perre P, Clumeck N, Carael M, (11):157-160.

et al. Female prostitutes: a risk '
group for infection with human T-
cell lymphotropic virus type III.

 

 

 

 
 

 

TABLE 1. HIV antibody in female prostitutes and reported AIDS cases in

wanen - selected cities, United States, March 10, 1987

Female prostitutes Women with AIDS*
HIV-ant ibody Percent Cases/

positive tested positive No. 1,000,0007 -

Eastern United States

Atlanta 1/92 (1.1) 8 12.5
Mi ami 47/252 (18.7) 100 145.3
Newark-Jersey City

-Paterson 82/56 (57.1) 143 526.2

Western United States

Colorado Springs 1/71 (1.4) 1 9.6
Las Vegas 0/34 (0.0) 1 16.0
Los Angeles 8/184 (4.3) 26 21.7
San Francisco 9/146 (6.2) 21 71.9

 

* Includes 45 wanen (216 years of age) fran Miami and one fran
Newark who were born in countries where heterosexual transmission
is believed to play a major role.

* Rate based on the number of females (216 years of age) reported
as residing in the urban area or place of study.

TABLE 2. Risk factors for HIV antibody in female prostitutes and for
AIDS in women, by race or ethnic group - selected cities, United
States, March 10, 1987.

 

Female prostitutes* Women with AIDS*
HIV-ant ibody Percent Percent
positive/tested positive No. of total

Black or Hispanic .
IV-drug abuser *31/124 (25.0) 108 (43.0)

Other, ‘unknown ' 12/1568 (7.7) 143 (57.0)
Total 43/280 (15.4) 251 (100.0)
White or other

IV-drug abuser 16/157 (10.2) 26 (53.1)

Other, unknown 3/1279 (2.4) 23 (46.9)
Total 19/284 (6.7) 49 (100.0)

 

* Analysis restricted to the 564 study participants (of 835 tested)
who answered the question regarding IV-drug abuse.

+ Includes 46 women who were born in countries where heterosexual
transmission is believed to play a major role, who were reported
to COC as meeting the surveillance case definition for AIDS, and
who were residents of one of the seven research sites.

§ Odds ratio = 4.0; 95% confidence interval = 2.0-8.2.

@ Odds ratio = 4.7; 95% confidence interval = 1.3-16.5.

13

 
 

 

14

Prevalence of HIV antibody among prostitutes in the San Francisco Bay Area

In the March 27, 1987 issue of the
Morbidity and Mortality Weekly Report,
the Centers for Disease Control Colla-
borative Group on HIV Infection in
Women reported on HIV antibody preva-
lence among prostitutes in seven United
States research sites. One of the sites
was the San Francisco Bay Area; report-
ed here are details of this study group
and camparisons with findings fram the
national study. ,

In the San Francisco Bay Area 146
wanen who met the study eligibility
requirements were recruited through
carmmity outreach. Most were stil]
engaging in prostitution. All San Fran-
cisco participants provided 10 ml of
blood for serologic testing for anti-
body to HIV by enzyme immumoassay and
Western blot methods. A standardized
brief physical examination focused
on signs of HIV infection and recent
IV drug use (IVDU). Interview informa-
tion included limited medical history,
extent and type of sexual behavior
with clients and steady partners, and
use of barrier protection, as well as
drug use.

In the San Francisco Bay Area co-
hort, the average age of participants
was 27 years (range, 18 to 53); 16
women were less than 21 years of age.
Most women (63%) had been born in
California; 47% were white, 27% were
black, 16% were Latina (Hispanic),
and the remaining 10% were Asian,
American Indian, or of mixed origin.
Their prostitution histories varied:
45% had worked entirely on the streets,
16% had never done street work, and
the remainder had mixed histories of
street work plus other means of meet-
ing customers (primarily hotels,
escort services, and telephone arrange-
ments). Length of work ranged fram one
month to over 34 years (median = 48
months), and mmber of paid custamers
ranged from 9 to 40,800 (median=
3,800).

Nine of 146 (6.2%) local sex indus-
try women (prostitutes) were sero-
positive for HIV antibody. This rate
was similar to the seroprevalence
rate of 4.6% (8 of 124) in Los Angeles.
California rates were much lower than

rates reported fran New Jersey and
Miami but were higher than those re-
ported fran Colorado, Georgia, and
Nevada. Differences in recruitment
strategies could account for same of
the variation in the infection rates.
Differences in infection rates between
areas paralleled differences in AIDS
incidence in women.

All seropositive women in the San
Francisco Bay Area study were current
or former IVDU's (Table 1). While the
positivity rate of black and Latina
participants (8.1%) was greater than
that of white participants (4.8%), the
difference was not statistically signi-
ficant (QR=1.75, 95% Cl=0.45-6.82).
Other sites in the national study re-
ported more marked differences: black
and Latina sex workers had an HIV sero-
positivity rate of 15.3% compared to
6.7% among white sex industry wanen
fran those areas. In the Bay Area these
racial differences were not due to the
prevalence of IV drug use in each group
since the proportion of IVDU's among
black and Latino women was 47%, similar
to the 51% among white women.

Other factors associated with HIV
seropositivity (p<01) in the San Fran-
cisco Bay Area cohort were having a steady
sex partner who was an IVDU and a
history of more than one treatment for
syphilis. However, while the majority
(57%) of sex industry women in the Bay
Area group reported condamn use more than
90% of the time with customers, only 5%
of all women used them consistently with
their steady sex partners. The likelihood
of SID transmission fran women in this
group, therefore, is relatively low. To
the extent that their steady sex part-
ners are engaged in high risk behaviors
(IVDU, other high risk sexual partners),
however, their own likelihood of acquir-
ing STD's, including HIV, is increased.

In recognition of the interaction
between drug use, prostitution, and in-
fection risk, especially among street
prostitutes, a collaboration of local
organizations is developing outreach
programs that promote safer sexual and
IVDU behavior. Participating organiza-
tions include Project AWARE (Association
for Womens AIDS Research and Education),

 
 

 

QOYOTE (Call Off Your Old Tired Ethics,
@ prostitutes rights organization),
Cal-PEP (California Prostitute Educa-
tion Project), and the Mid-City Con-
sortium (Project AWARE, OOYOIE, San
Francisco City Clinic, Haight-Ashbury
Free Medical Clinic, Larkin Street
Youth Center, Real Alternatives Pro-
gram, and Youth Environment Study).
Members of at-risk populations parti-

TABLE 1. HIV antibody status by race and IV-drug use in female

San Francisco sex workers

cipate in the development of programs;
programs include extensive one-to-one
contact and group presentations in dis-
tricts of extensive prostitution and
drug use. For further information contact
Project AWARE at 476-4091.

Reported by JB Cohen, MPH, PhD; LE Poole,
RN, MS; LB Haver, RN; CB Wofsy, MD, Pro-
ject AWARE, AIDS Activities Division,
San Francisco Genera! Hospital.

 

Percent
Ant ibody Ant ibody
Positive/Tested:. . ‘Positive:::
BLACK, LATINO
IV Drug User 5/25 20.0
Non I'VDU "0/37 0.0
WHITE, ODER unk
IV Drug User 4/36 11.0
Non I'VDU 0/48 ° 0.0
Total 9/146 6.2

 

15

 
 

 

TESTIMONY PREPARED
BY
BARBARA GIBSON
DIRECTOR OF AIDS OUTREACH SERVICES

THE ADDICTION RESEARCH TREATMENT CORPORATION
BROOKLYN, NEW YORK

THE PRESIDENTIAL COMMISSION ON HUMAN INNUNODEFICIENCY
VIRUS EPIDEMIC

TOPIC: MODES OF TRANSMISSION/SEXUAL TRANSMISSION

DECEMBER 18, 1987

WASHINGTON, D.C.

 

 

 
 

 

In view of the fact that intravenous drug abusers (IVDAs)
represent the major vehicle for the spread of the human
immunodeficiency virus to the heterosexual community it is very
useful to note sexual behavior of IVDA’s. A study of 96 patients
of the Addiction Research and Treatment Program, a Methadone
Maintenance Treatment Program in New York revealed the following

sexual behavior.

Ninety-five percent of the sample - 56 males and 35 females
reported only heterosexual contacts between the period 1977 and
1985. One male and two females admitted bisexual contacts:
homosexual contacts, were reported by one male and one female
during the same time period. While 767 sexual partners were
reported by the study subjects, only ten percent of the sample
stated they had more than one sexual partner at the same time
during the study period. Thirty-seven (15 men and 22 women) of
the sample reported having only one sexual contact between -1977
and 1985. Of those study participants who claimed only 5 4
heterosexual contacts females were more likely than males (61%
and 26% respectively) to have had a single sex partner during
the eight year period under question. Twenty-eight percent of
the males were in sexual contact with greater than 12 persons

during this eight year period. Only one female indicated at

 
 

 

least this number of partners and she stated she was in the sex
industry. - 1 4

Only thirteen percent of the, study) sample admitted to use of

condoms during the targeted eight /year, period. /
: /

| /

Over half (65%) of the sexual contacts of the| study participants
were users. Female study subjects reported that 63 percent of
their sexual contacts used drugs) intravenously, while only 32
percent of the sexual contacts of the male study subjects were

reported, to use injectable substances.
‘ |

These results indicate. that over half of ‘this sample reported
sexual contacts with non-intravenous drug abusers, thus
demonstrating that sexual affiliation with intravenous drug
abusers by non-drug using persons, who are'mostly women, is a
prime factor in the transmission of HIV infection outside of the
drug using/abusing community. The fact that male IVDAs reported
a greater percent of non-intravenous drug using sexual contacts
than female IVDA’s coincides with previous investigations. What
is herewith suggested is that males represent the greater number
of transmitters of HIV infection to the general population.
Another very important issue that emerges from this study is the
dual route of HIV infection experienced by women because the

majority of sexual contacts are IVDA’s and they themselves are

 
 

 

parenteral drug users. These two facts may explain the higher
HIV infection rate seen among women in many sero prevalence

studies.

It is believed that the best prevention available at this point
is education. What has emerged pursuant to this fact isa
thrust to reach every segment of this Nation’s population.
Especially those at highest risk for infection with the HIV.
Thus we have become gender specific, only to a limited degree,

culture specific, lifestyle specific and we think sex specific.

What may well be upon us at this point in time is the critical
need to reassess our methods of education and the quality of

information we are imparting.

It is understood among substance abuse treatment professional
that participation in a drug abuse treatment program is the most
important variable in stemming the spread of the HIV. What will
make the difference however is the content of the treatment and
how effectively it impacts the lives of the clients involved.
Are we giving rhetoric and not real guidance and support that
will lead to attitude change followed by behavior change where

\

necessary for the health and well being of the participants?

 

 
 

 

Much attention is given to the warning not to share needles or

accompanying injection items, as well as to that of not using any
drugs or alcohol. What is crucial here is that transmission of
the virus through injection items may well be the initial
process, however sexual contact assumes the primary facilitator
for spread of the virus. Therefore we must realistically
address sexual activities and expression as they relate to HIV
transmission. We must make the sexual jargon we so freely offer,
"safer sex or risk reduction sex" a reality. We must ask
ourselves what we mean by safer sex. Are we willing to be
realistic and non-judgmental in our offerings towards that end?
Once we can answer those questions, and in the affirmative, we
can go on to establish sex education as a key component in our
education programs, beginning with an in depth” lesson in the
anatomy and physiology of sex. Informa research among program
participants has revealed this as very

th needed before "safer

sex" can be accepted activities worthy of pursuit.

The education process must be creative, ginative and people
oriented. We don’t need more pamphlets, we need more trained
people. HIV infection and AIDS prevention must be people to
people, person to person oriented. We see critical change in
attitudes, followed by change in behavior when participants in
treatment programs are approached and consistently worked with on

a one to one basis.

 

 
 

 

Funding to provide for special counseling services such as sex
therapists, couple counseling and counseling addressing women’s
issues, and issues are germane to the men in the programs. We
cannot afford to be ‘tunneled in our vision, but rather we must
be all encompassing in our treatment thrusts. We must
understand that addicts are socialized with the same beliefs,
values, needs wants as are those of us who are not of "addictdom"
the kingdom of addicts. The only walls that separate us from
them are those that have made mazes of our minds and hearts,

those that we as individuals have built.

Substance abuse treatment programs should be funded to offer HIV
testing for those clients who wish such service. Testing should
be an available component of the counseling process.. Such
service could well be an effective part of prevention if provided
on site where daily supportive counseling, and comprehensive
medical care are available. The testing process requires much
more consistent and in depth counseling prior to the advent of
testing and depending on the results, post test counseling and =

support may have to be provided ad infinitum. so

Such services are more effectively provided in a program setting

than in a free standing anonymous testing site that provides

 

 

 

 
 

referrals for such services after the test and results have been
given ‘to the testee.

Finally, treatment programs should be funded -to work with the
sex partners of their clients. Often a client will request that
counseling as well as medical care be provided his or her spouse
who is not a client in the program, and who may not be an IVDA.
The process of encouraging attitude and behavior change that
impacts on an individual who is part of a relationship must
involve each of the two or more persons in the relationship. The
chances of success are certainly enhanced if such services are
provided. Often a client needs support as he or she introduces
new and different strategies for change or adjustments in their

old activities, and beliefs. | 7

|

Finally there are very special issues experienced by men and
women, separately with regard to HIV infection and AIDS
prevention. Many of them are based on the way men and women have
been socialized and thus the way power prevails in their
relationships. The rules, and expectations assigned to men and
women are in many instances not conducive to effective attitude,
belief and finally behavior change unless these as well as other

issues are addressed.

 
 

 

We must not forget that HIV, infection prevention is politics,

sex, medicine, economics, public health policy, religion, law
enforcement, newspapers, radio, movies, television and music.

But above all it is loving and caring about those who are our
partners, and loving and caring about those of others. AIDS
prevention will take all of us or AIDS will continue to claim the

lives of many of us.

 

 
 

 

TESTIMONY TO THE PRESIDENTIAL COMMISSION
| ON THE HIV EPIDEMIC

Intravenous Drug Abuse and the HIV Epidemic: Perinatally Transmitted AIDS
Loretta P. Finnegan, M.D.

December 18th, 1987

I am pleased to have this opportunity to address the Presidential Commission
on the HIV Epidemic with regard to perinatally transmitted AIDS. I presently hold
the position of Professor of Pediatrics and Professor of Psychiatry and Human
Behavior at Jefferson Medical College of Thomas Jefferson University in
Philadelphia. In addition, I am Director of the Family Center which is a
program designed to provide intensive medical and psychosocial services to drug
and alcohol dependent women, in general, and to provide specialized care to those
who are pregnant. Comprehensive medical services at Family Center include a
prenatal clinic at the Thomas Jefferson University Hospital which is staffed by
obstetricians specifically trained in the field of addiction and high risk
pregnancy. Additional treatment modalities include individual, group and family
therapy. On'site methadone maintenance is provided and in-patient detoxification
is available f or select patients. Educational services in the form of prenatal
and parenting classes are also offered. Infants who exhibit withdrawal are
treated in the newborn nursery by our neonatal physicians. Services of Family
Center are aimed at developing personal resources, improving family and
interpersonal relationships, reducing and eliminating socially destructive
behavior and facilitating maximum attainable adaptation for new parents within
their environment. Our program objectives include: the prevention and reduction
of maternal and infant mortality and morbidity, to provide well planned and
coordinated multidisciplinary counseling and educational services directed at

 
 

 

Promoting the development of parenting skills, to develop patient personal

resources, to improve insight and self growth in which the patient is able to set
short and long term goals to be accomplished while in treatment, as well as.
during the period designed as after care.

Over the last seventeen years of operation, within the service and research
goals of the program, we have found that we can rehabilitate a Significant number
of women who have come to us during pregnancy. Moreover, we have been able to
reduce the incidence of low birth weight infants from nearly 50% to 18%, |
Maternal medical and obstetrical complications are treated, therefore providing a
similar intrapartum course in the drug dependent mother as is seen in the general
population of the same socio-economic and ethnic class. Our research with regard
to the infant has resulted in treatment protocols for infants undergoing
abstinence. Within our long term follow-up studies, we have found that ‘the
Provision of these perinatal services to this very high risk population results
in infants and children who are developmentally, neurologically and physically
normal, Unfortunately, these women, who are already weakened by unemployment,
illiteracy, homelessness, crime and other diseases, including their alcoholism
and drug addiction, are now those at risk for the human immunodeficiency virus.

The interface between AIDS and drugs is a key issue from the standpoint of
perinatal transmission. According to the estimates by the National Association
of Children’s Hospitals and related institutions, about 3,000 infants are
infected with the AIDS virus each year, either at birth or later when being
breast fed. That figure is expected to reach 10,000 by the year 1991. Dependent
on the geographical area, the incidence of HIV positivity in drug addicted
individuals is between 2 and 75%. Although there is good evidence to suggest

that the sexual behavior of the homosexual population has been significantly

 

 
 

 

modified to slow the rate of acquisition of further HIV infection, this is
clearly not the case among drug abusers. Their infection rate is increasing and
they are likely to become the main transmitters of the infection in the future.

The majority of women with AIDS are drug abusers or the sexual partners of
drug abusers. Hence, nearly 75% of AIDS cases in women are associated with
intravenous drug abuse. Over 80% of children who contract AIDS are born to drug
abusing mothers or mothers who have a sexual partner involved in drug abuse.

It is important to distinguish between pediatric and adult AIDS. Serious
bacterial sepsis is a major problem in children and aggressive neurologic disease
secondary to primary HIV central nervous system infection is more pronounced.
Lymphoid interstitial pneumonitis is a common lung disease in children and
hypergammaglobulinemia is more prevalent. Children born to HIV positive mothers
have been reported to have dysmorphic features. Less common in children, or
rare, are Kaposi’s sarcoma, hepatitis B infection, peripheral lymphopenia and an
acute mononucleosis-like presentation. Most disturbing are the neurological
findings in children including microcephaly, motor dysfunction, chronic
encephalopathy, seizure disorders, developmental delay and absence of
developmental milestones. All of the above conditions put an inordinate demand
on medical facilities for these children, in the acute phase, and may require
long term placement. Many issues concerning pediatric AIDS have not yet been
completely defined. Offspring of a subsequent pregnancy in a seropositive woman
who has previously had an infected child, may not be infected. Among twins, one
twin may be spared the HIV infection and/or clinical disease. Clearly, larger
studies dealing with outcome of pregnancies from women of risk groups who are
seropositive are needed to arrive at meaningful guidelines for counseling.

The risk factors for HIV infection in drug users include geographic

 

 
 

 

location, the sharing of needles, the use of shooting galleries, the lack ‘of
cleaning or disinfection of works, the use of I.V. cocaine and sexual
transmission risk factors which include prostitution, the nonuse of condoms and
high risk sexual practices. Suggested methods to prevent and treat this epidemic
include: effective behavior modification, education, vaccination, antiviral
therapy, immune modification, identification and elimination of co-factors,
treatment of opportunistic infections and the screening of blood donors.
Unfortunately, within the population of intravenous drug abusers, some of these
issues have not been well addressed. Progress has been made in some of the
above areas but we are still at a very preliminary stage in others. The two main
issues that must be addressed in the intravenous drug abuser are behavior
modification and education. |

In Philadelphia, we have seen a marked increase in the use of drugs in the
Pregnant population. Within our city at \this time, it is estimated that 10-15%
of all women who deliver have had exposure to psychoactive agents, the majority
of which have been through the fatravenoud route - At Family Center, we have an
average of five referrals a day or 1,000 a year. We can only consider enrolling
one-third of these due to inadequate funding. In order to address the major
issues of education and behavior modification for our patients, we used pre-
test/post-test measures in conjunction with an educational intervention to
determine knowledge concerning AIDS, needle practices and sexual behaviors. In
spite of providing the women with educational information, they continued to
intermittently use needles, sharing them with their partners and friends. It was

\
evident that they are incapable of changing their sexual behaviors in spite of

\

the fear that they all express of contracting AIDS. This information suggests

that our traditional educational methods are inappropriate for this population

 

 
 

because of poor motivation, specific attitudes they may have from their cultural
backgrounds and an inability to alter behaviors. They are frequently influenced
by their male partners and moreover due to the influence of the psychoactive
drugs that they self administer daily.

We could completely eliminate this disease in the innocent children if
services for their mothers were provided prenatally and if education was
appropriately defined for them, but, there are a multitude of barriers to the
effective prevention, intervention and treatment of mothers and children at risk
for AIDS. From my nearly two decades of experience with this very high risk and
needy population of mothers and infants, certain recommendations are appropriate.
First and utmost, there is an urgent need to expand the availability of methadone
to intravenous drug abusers coupled with comprehensive treatment for the pregnant
drug dependent woman as well as postpartum women on drugs. Appropriate
surveillance within programs treating these women is essential in order to
monitor them and to give them appropriate public health advice. The follow ‘up of
all pregnancies within this population is essential due to the nature of the
disease that may not be evident during the perinatal period, but which may be
manifested within several years after the birth of the child. Moreover, the
issue of abandonment of the children and foster care needs must be addressed and
planned appropriately. Specifics of treatment issues have been previously
mentioned in this testimony and additional issues are clearly defined in the
Report of the Surgeon General’s Workshop on Children With HIV Infection and their
Families, published by the U.S. Department of Health and Human Services.

Furthermore, although hospitals who receive governmental funding should not
be permitted to discriminate against AIDS patients, it is clear that these

hospitals will not be able to cope in the near future with regard to having

 

 

 
 

 

enough hospital beds as well as the resources for acute care. Therefore,
government must consider establishing large hospitals dedicated to the treatment
of AIDS. Such hospitals would be able to develop a very skilled staff with a
concentration of proper expertise with regard to the latest advances in the
management and research of AIDS.

Moreover, having appropriate long term facilities would provide efficient
care, without the tremendous hospital costs that many acute hospitals currently
encounter. Therefore, we must develop a flexible system for extended out of
hospital care. We also have the crucial task of developing an appropriate, but
less expensive, adult hospital unit to care for women and children who are less
ill but vary in their degree of dependence. We should consider the ability to
treat many of the patients at home with the assistance of visiting nurses and
individuals who can deal with the many psychosocial aspects. Home health care is
a key service in an effort to provide effective and cost efficient care to the
people with AIDS.

Numerous psychosocial issues emerge when the woman is advised that she is

HIV positive. She will be aware of the fact that she and her newborn potentially
have a low survival rate. This may limit the amount of emotional energy that she
has to expend with regard to dealing with her pregnancy. She may not be able to
complete the emotional tasks of the pregnancy and may have mixed feelings about
delivering an infant that might be infected with this mysterious and debilitating
disease syndrome. Her will to live may also be effected and she may become
depressed. In many instances, the spouse and other children of the woman also
have AIDS so she must consider who will care for her children if she dies firs \
Options for either interruption of the pregnancy or methodologies for the

prevention of future pregnancies must be part of the counseling for these

 
 

unfortunate women.

From the standpoint of education, the tools that we currently have are sadly
inadequate. There is a need for more explicit and descriptive methods to teach
these women through creative tools other than traditional methods of didactic
teaching or reading material. The reading material that is currently available,
particularly the type printed by agencies of the United States Government, are
often beyond the comprehension of the drug dependent mother. The literature lacks
graphic visuals which have proved to be effective in changing sexual behavior.
Though lacking education and developmentally immature, this audience is
accustomed to the sophisticated marketing techniques used by the media today. I
would recommend high quality, professionally produced videos which explicitly
illustrate safe sex practices for the heterosexual male and female population.

We must speak to these women at their level. It is our challenge as leaders,
educators and health care professionals to employ creativity and candor in our
efforts to help this population modify their behavior. One primary cause of
widespread drug addiction outside of the white middle class is due to years of
insensitivity to cultural differences with regard to effective education for a
culturally diversified audience. We must not make the same mistake when it
comes to AIDS education.

From the standpoint of research, little is known of the many factors
pertaining to the natural history of the disease in the perinatal period. In
spite of this, the government continues to do research in an extremely
inefficient and unproductive way by using the traditional system of peer review
with individual grants to specific institutions. Efficiency and rapidity in the
collection of this information is essential. We cannot wait for years and years

to obtain this information. We must develop a common protocol and provide monies

 

 
 

 

for research.and treatment to key areas throughout our country where programs for
Pregnant drug dependent women are in existence and where research capabilities
have already been established such as those in San Francisco, Chicago, Detroit,
New York, Pittsburgh and Philadelphia. The precedent for this has already been
established if one looks in the May 23, 1987 issue of The Lancet whereby a
project developed within the European Communities, including universities in

Great Britain, Italy and West Germany, are beginning to collect information
concerning the effects of seropositivity in pregnant women and the outcome of
their offspring.

I want to underline, for this Commission today, the debilitating nature and
long range intergenerational effects of chronic drug addiction. It is even more
devastating to drug dependent women and mothers who so frequently do not have the
resources for recovery available to them. Because of the lack of treatment
services and research endeavors within the drug addicted population for so many
years, we are now plagued with rampant drug addictidn in this country. Because
of the intergenerational transmission of the disease of addiction, as a country,
we have fostered a spiraling legacy of addicts Biving birth to addicts. This
Gark reality has now developed into the fact that soon we will have many
thousands of babies at our doorstep who are dying of AIDS. If but only 10% of
the resources for treatment and research provided for such diseases as cancer,
heart disease and stroke had been applied to this population several decades ago,
we would not have the overwhelming problem of rampant addiction, producing the
concomitant tragedy of babies with AIDS. We are now confronted with the HIV
epidemic, but we've, had a drug abuse epidemic for a quarter of a century and we

|

haven't done anything effective about it! Will we permit the AIDS epidemic to

\

reach uncontrollable heights? Must this generation and future generations suffer

 

 
 

 

due. to our unwillingness to act with urgency? We must make a sincere commitment

that turns the course -of this human tragedy. »

 

 

 
 

 

[of 3

. a
“| 1? #
' i’ —
t - ?

PRESENTATION TO
THE PRESIDENTIAL COMMISSION ON THE HUMAN
IMMUNODEFICIENCY VIRUS EPIDEMIC

PANEL 9: OUTREACH EDUCATION TO INTRAVENOUS DRUG USERS
DECEMBER 18, 1987

Dirkson Senate Office Building
First and C Streets NE
Washington, D.C. 20510

Harvey W. Feldman, Ph.D.
Project Director
The MidCity Consortium to Combat AIDS
1779 Haight Street
San Francisco, California 94117

 

 
 

 

Dr. Prim, Members of the Presidential Commission on the
HIV Epidemic, my name is Harvey Feldman. I am the Project
Director of the Midcity Consortium to Combat AIDS in San
Francisco. I would like to thank the Commission for the
opportunity to express my views on the HIV epidemic among
intravenous drug users.

The Consortium came into existence a year-and-a-half
ago to address the second wave of the AIDS epidemic expected
to occur among intravenous drug users, the first, being a
virulent outbreak among gay men. At the time, the outlook
was bleak; and San Francisco was expected to repeat the
experience of New York City and Northern New Jersey, which
had already experienced a doubling of AIDS cases among IV
drug users every six months until it reached its present
estimate of a seropositive rate of approximately 60%. In
fairness to New York City, the epidemic had already taken
its toll by the time city officials identified its exist-
ence. Drug experts, however, were predicting similar sce-.
narios for other major urban areas where large concentra-
tions of IV drug users existed. The common wisdom that
prevailed alledged that intravenous drug users, popularly
identified as heroin addicts, were an incorrigible group of

anti-social pleasure seekers whose psychological profiles

/

 

 
 

 

made them poor candidates for the kind of behavioral change
needed in order tg prevent the spread of HIV within this pop-
ulation and then to sexual partners.

In San Francisco; we began our project first by identi- .
fying the locations of intravenous drug users. From the
beginning, it was. clear that the largest majority of IV drug
users were not attached to existing drug treatment programs ;
later, our research found that many IV drug users had little
desire to seek treatment. Despite considerable previous
experience with, IV drug users, our staff believed it was
necessary to gain a current first-hand knowledge of existing
needle scenes and the ways hypodermic syringes were shared.
Throughout this ethnographic research effort, we attempted
to construct a strategy of intervention which could be.,
tailored not simply to. IV drug users but specifically to| the
various cultural contexts in which IV drug users carried out
their activities.

Several significant findings were made. the (connts-
sion has in its. possession copies of the paper Dr. Patrick
Biernacki and I prepared for the Technical Review Meeting on
“Needle Sharing Among Intravenous Drug Abusers" which NIDA
held in Bethesda, Maryland on May 18-19, 1987 and which Dr.
Prim attended, and the evaluation of the MidCity effort

-2-

 

 

 
 

which Dr. John Watters presented at the Third International
Conference on AIDS held here in Washington D.C. this past
June. In Dr. Biernacki's and my paper, we emphasized that
the overriding issue in addressing the AIDS epidemic among
IV drug users is the public policy of prohibition of using
narcotics and dangerous drugs except through medical chan-
nels, a national policy which makes. the total activity of
non-medical drug and narcotic injection illegal. In most
states, notably California and New York -- two of the major
centers of the HIV epidemic, I might note -- hypodermic
Syringes are likewise regulated so that possession of them
for the purposes of injecting narcotics and drugs puts IV
drug users at risk for arrest. As a result, the total drug
injecting activity from the point of purchase to the point
of injection takes place under clandestine circumstances.
The result is that the implementation of this policy separ-
ates IV drug users from legitimate society and creates a sit-
uation of Suspicion and distrust, which makes any interven-
tion difficult. More important, for those people who will
not or cannot follow a path of abstinence, it makes needle-
sharing a near necessity. After examining needle scenes in
San Francisco, we came to the conclusion that unless some
bold and aggressive interventions designed to minimize dis-

-3-

 
 

 

trust were designed, San Francisco would soon follow the
path of New York City.

We began our street-based effort with a simple premise
that: The issue is control of a deadly, incurable disease;
given the gravity of the consequences of failing to succeed
in this task, other, lesser considerations: must be mini-
mized. After studying the available AIDS lt#terature,
becoming familiar with the ferocity of previous epidemics
such as those described in Hans Zinsser's book, Rats, Lice
and History, after important consultation with our col-
legues in New York City, and after considering our own find-
ings which mapped out the potential routes of spread should
the virus further enter into these needle scenes, we came to
the conclusion that preventing new infections, not necessar-
ily stopping drug use, was our first and most important pri-
ority.

Our plan has been to train our Community Health Out-
reach Workers -- we call them CHOWs -- to be among other
things non-judgmental and then to send them directly into
those natural hang-outs of IV drug users. By becoming fami-
liar with the daily routines of IV drug users and making.
themselves available in critical situations, CHOWs develop

trusting and confiding relationships that enable them to

-4-

 

 
 

t

deliver effective risk reduction messages that have credibil-
ity on the street. I want to underscore one point: we do
not condon drug-using activities; we just do not pass judg-
ment on them. As part of our overall educational approach,
we have also developed a protocol for a quick and easy
method for disinfecting hypodermic syringes that employs
using common household bleach; and we distribute samples of
bleach in convenient one-ounce bottles with clear instruc-
tions on how to clean injection equipment. Distributing
bleach has become an important: educational technique in our
overall plan. Similarly, we routinely distribute condoms
to the same populations. .
- These intervention strategies have,created considerable
discussion around the country, particularly the distribution
of bleach. Some.people see the distribution of bleach as
tacit approval, even encouragement, of continued drug con-
sumption. Our position of aggressively seeking out IV drug
users, educating them on their risk for infection from shar-
ing contaminated hypodermic syringes and through sexual
transmission, and then providing them with the means to
avoid it, we believe, is a realistic one that is consistent

with our priority.

 
 

 

Our strategy. has..evolved from. our current street ‘
research as’ wel] as previous.street ethnographies of drug
users... It has evolved as well: from an extensive study of
the history of drug policy -in the United States and an exam-
ination of how those: past public: policies in the drug field
impact this epidemic. After 60 years of a national policy
of prohibition, it must be noted that a significant portion
of each generation has continued to be attracted to injec-
ting drugs and,narcotics: Some observers have stated that
the prohibitionist policy and-the way it is enforced may, in
fact, be.one of: the features.that attracts adventurous young
people, many of them from disadvantaged communities, into
pursuing these deviant careers-in:the first place. But the
persistence of the behavior is by now one of the realities
of modern life, not onty. in. ‘the United states but throughout .
the Western World. : To prefer - ‘that TV drug users refrain
from injecting drugs s tsa desireable 2 ‘and laudable goal; to
deny them direct access, to the means ‘of preventing infection
of a virus that results. in incurable and deadly diseases is
a punitive and ‘malevolent policy: that - ‘neither addresses the
epidemic nor achieves abstinence.

Our intervention in San Francisco has been shaped some-

what by our visits and correspondence with collegues in the

-6-

 

 
 

 

Netherlands, a country whose leaning$ are stern but prin-

cipled and humane. Like the Dutch, we take the position
that injecting drugs and narotics is to be discouraged. Ini
San Francisco, our street-based program produces more fefer«
rals to drug treatment programs than any other source. For
those IV drug users who continue in their tareer lines, we
stress the importance of carrying out such activities, par«
ticularly during this epidemic, in the healthiest ways pos«
sible. This approach has shown some preliminary success,
We hesitate to make major claims in this area, and it is
with great caution that I bring to your attention the fol-
lowing findings in San Francisco, which Dr. John Watters of

the Urban Health Study has authorized me to report:

There was an approximate 50% increase in the
seroprevalence of HIV during 1986-87, The rise
was from 9% in 1986 to 15% in 1987. There was,
however, no increase between the first half of
1987 and the last half of 1987 based on a sample
of 1,189 IV drug users in San Francisco. While
these data are very preliminary, and the six month
interval between observations too brief to draw
conclusions, the data suggest at least a temporary
flattening in the trajectory of the HIV epidemic
among IV drug users. Although there may be other

«Je

 

 
 

 

factors that _could account for this apparent

attenuation in seroconversion, the Slowing effect has

occurred simultaneously with the aggressive outreach
efforts of the MidCity Consortium to Combat AIDS.

Thus, the serological data tend to validate independent

studies in San Francisco that have reported dramatic

increases in the application of “safe needle hygiene by

IV drug users" (Watters, 1987).

Also, Drs. Andrew Moss and Richard Chaisson of the AIDS
Epidemology Group at San Francisco General Hospital have —
studied methadone patients from a community where the Mid-
City street-based outreach does not operate. They have
noted a spill-over effect and an adoption of needle hygiene
by heroin addicts. ~They state that preliminary analysis of
1986-87 data shows: "40% of the IV drug users who said they
share needles reported that they clean needles with bleach
frequently or always." Moss and Chaisson conclude: "The
bleach program has penetrated far into those groups who util-
ize these treatment programs" (Moss, 1987). Permit me to
repeat, these methadone patients are populations that have
not been the specific target of our community-based -inter-
vention but have indirectly benefited from the program.

In conclusion, in San Francisco, we have been success-
ful in introducing a new and bold outreach strategy to IV
drug users who are at risk for HIV infection with a minimum

of controversy and limited opposition to distributing

-8-

 
 

 

bleach, Health administrators: from other cities and states
who have sought technical assistance from us have stated hes-
itation about distributing bleach in their jurisdictions
because of expressed opposition from police officials who
Took on bleach as another form of drug paraphernalia. In
San Francisco, where we have a police chief with both vision
and a sense of responsibility to public health, a plan of
cooperation has been effected which balances the necessity
for police to enforce the laws of the State and the impera-
tives of stopping the spread a deadly epidemic.

“As cities throughout the United States begin to mount
programs to address the HIV epidemic among IV drug users, it
is important to develop the kind of street-based interven-
tion that brings together qualified health educators, such
as CHOWs, with populations who have been traditionally stig-
matized and do not normally volunteer for interaction with a.
disapproving legitimate society. Our program has demon-
strated IV drug users” willingness to cooperate with an
approach that shows a neighborly concern for their well
being by receiving and following risk reduction methods on a
voluntary basis. The support of this Commission for
funding such efforts throughout the country but specifically
in those major urban areas where IV drug use is concentrated
would be an important step to mobilizing resources toward

stopping the spread of HIV.

 

 

 
 

PRESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
TESTIMONY BY
MARGARET C. HEAGARTY, M.D.
DIRECTOR OF PEDIATRICS
HARLEM HOSPITAL CENTER
DECEMBER 18, 1987

On Monday evening a child died in Harlem; this is the
occasion and you are the appropriate people to whom to deliver a
eulogy for this three year old child, for perhaps you can help me
and my staff mourn this death. And maybe, just maybe, you can
help to give this death some meaning, perhaps in death this child
can help other children.

The child was admitted to the pediatric service of Harlem
Hospital almost two years ago. The family had been burned out of
their apartment, and this child with several brothers and sisters
had to be’ placed in foster care. But the welfare worker had

trouble finding a foster home, so the infant had spent several

days in the worker's office, while she searched for a placement.

 

Finally in desperation she appeared one night in our emergency
room with this infant. My pediatrician admitted the child,
against all rules, with a sort of made up diagnosis. of viral
infection, out of’ pity for the infant and the social worker. |

‘Aside from a mild cold and slight wheezing the 9 month old
infant ‘appeared healthy. But because the mother was known to be
an intravenous drug user and because the child had a peculiar
face, within the first few weeks of hospitalization, we got
permission from the parents to test their child for the presence
of the HIV antibody. And, unfortunately the test was positive.
At that point, since the infant appeared perfectly healthy,

developing and growing normally, we assumed or perhaps more

 

 
 

accurately, hoped that this result simply reflected the mother's
antibody status, rather than HIV infection.

But the minute we knew about the positive antibody test, we
_also knew that this child was destined to stay on our ‘wards for a
long time. The mother was an intravenous drug user who very well
may have the disease herself and the: father an alcohdlic. The
parents lived in a welfare hotel in Brooklyn, could not find
housing, were not able to reorganize their lives enough to
reunite their family or care for this child. §. But dégpite their
real limitations and personal tragedies they tried in their own
way to: love and. support this child. So let me be ‘clear, I'and my
staff do not judge them, do not condemn them and! you mist not
either.

Even two years ago we recognized that New York City's foster
care system was at a breaking point.’ We also were beginning to
understand, that few foster parents were willing or able to'take a
child who might be infected with this virus. :
And indeed in the past two years between 15 and 20 of the 60
' or.70 children for whom we have cared have spent most of their
lives on our wards. ..Some, like this child, have lived and died
in my department,. only four have been placed in foster care, and
when I left yesterday four were still there. For you see, we as
a community do not seem to have the will to find humané golitions
for these children displaced by this virus.

And so for the past two years, this child lived on’ the
seventeenth floor of Harlem Hospital. About a year ago the

nurses began to report that the child was no longer growing and

 

 
 

 

developing, had stopped walking, had stopped talking. And we
realized that what we had hoped was a normal, uninfected child,
was, in fact one who had the neurological form of AIDS. Ana I,
my doctors and nurses have watched helplessly as this child
endured a gradually and painfully wasted away life that finally,
mercifully ended in death on Monday evening.

Now this child and most children with AIDS are to found in
places like Harlem Hospital, a city hospital. And city hospitals
are medical versions of Hill Street Blues.. at the best of times
precariously financed and staffed. AIDS has simply accentuated
these perennial problems of health care for the poor. And
nobody, not government, not philanthrophy, not the church seem to
have noticed that these children are in city hospitals throughout
the country, city hospitals that have received little if any
extra support in their effort to care for those with AIDS.

But this child and the other children for whom we care did
not and will not die unloved or alone. The nurses, the doctors,
the social workers, the cleaning men, the security officers, they
have become their parents, have come to love them. And on Monday
when this little child died, I decided that only we.seem to love
or care about then. I left a sad and grieving group of people
from all parts of my department worrying about and loving these
children, but understanding as well that the children have given
us much more than we can give them. So you see, I felt I had to
use this short time, to see if I coulda get you, with your
influence and power, to worry about them and to love them with
us. For on Monday evening as the child died, all of us on the

17th floor of Harlem Hospital felt lost and terribly alone. I

 

 

 

 
 

 

ask you to join us

i

in our concern for these the least of us.

—

 

 
 

 

TESTIMONY PREPARED FOR THE PRESIDENTIAL COMMISSION ON

HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

December 18, 1987

Topic: Perinatal AIDS

Presented by: Howard L. Minkoff, M.D.
Associate Professor of Obstetrics and Gynecology
Director of Obstetrics and Maternal-Fetal Medicine
State University of New York - Health Science Center at
Brooklyn
(718) 270-2072

 

 
 

 

I would like to thank the members of the commission for giving me the

Opportunity to speak to the issue of drug use and perinatal AIDS and to
offer the perspective of a provider of women's health care. I practice and
teach obstetrics in a sentinel comunity and have been involved in AIDS
research, focused on pregnancy, for several years. I cannot overstate to you
the impact Human Immunodeficiency Virus is having on the health of newborns
relative to other infectious diseases which. obstetricians have traditionally
battled.

Two percent of all women delivering at our institution, Kings County
Hospital Center, are HIV infected. I know you are all familiar with that
Statistic as well as the 60% seropositivity rate found atong intravenous
drug users in New York City which tends to make 2% seem relatively small,
To put that 2% in proper focus however, I would. like to compare its neonatal
consequences with that of other congenitally acquired viral illnesses. Using
national incidence of disease I would anticipate that in Kings County
Hospital, there will be, for example, one fatal congenital case of Herpes
simplex virus every two years, rubella every four years, and cytomegalovirus
or toxoplasmosis every five to ten years. Using a conservative estizate of
one third for the transmission rate of HIV, I anticipate one fatal
congenital case being born at our institution every ten days. By 1991 the
cumulative national total of HIV infected infants may be ten times that of
congenital rubella, syphilis and herpes combined.

I feel therefore a sense of urgency as the virus is moving quickly into
the population of heterosexual females in my community. It is clear that

efforts to deal with this problem must begin with the reservoir of infection

 

 
 

which is ‘intravenous drug abuse. The majority of infected women in our
studies have contracted’ infections with this virus through either drug use
or sexual exposure to drug users. A principal goal therefore must be to
eliminate this reservoir. Thus there is a critical need to provide
alternatives to intravenous drug use. In pregnancy in particular drug users
may be able to organize their lives sufficiently to get off street drugs and
on to methadone if adequate numbers of treatment sites and counsellors are
made available. Unfortunately this is not always the case. Additionally,
even if these efforts are made programs still need to be developed for those
women already infected. For them our goal has to be to empower reproductive
choices and to provide appropriate prenaval services, Pregnant women
infected with Human Immunodeficiency Virus must be informed of these facts.
* First, pregnancy may represent an increased threat to their health
by tasking early symptoms ° HIV disease.
* Second the choice of therapeutic ante for HIV related illness
may be altered because of pregnancy.
* Third there is a theoretical possibility that pregnancy being a
state of relative immune impairment, will accelerate the course of
HIV disease.
- Finally, 1/3 to 2/3's of pregnancies will result in the birth of a
child with a fatal illness which is often preceded by a prolonged
and painful course.
Clearly all this information is germane to child bearing decisions and

all women should have access to HIV tests in order to determine their

serostatus and inform their reproductive choices, if they so desire.

 

 
 

 

The management of pregnancies, as well as patient choices, may well be
effected by a patients serostatus. If a patient is seropositive maximal
efforts must be made to avoid increasing the risk of infection of the
neonate, It is possible for example that the routine placement of scalp
clips to monitor the fetus during labor could enhance inoculation of virus
from vaginal secretions into the neonate. Breast feeding needs to be
discouraged. Also since half of the children of infected mothers may not
develop AIDS it is important to make sure they do not develop other
illnesses to which their infected mothers May expose them , Thus for _
example mothers should be screened for diseases such as hepatitis B which is
transmitted in the same ways as HIV, which may be found in the sane
population and whose neonatal consequences are preventable with appropriate
interventions at birth. Serostatus, therefore is useful information for
obstetricians, and, since physician elicited risk factors fail to identify
sany infected individuals prenatal HIV testing should be routinely offered
though not mandated. |

For those women who do not use intravenous drugs and for whom shared
needles are not a concern there are still 75,000 infected heterosexual drug

using males in New York who pose an ongoing threat. Since the overwhelming
majority of these women are uninfected, but in Zany communities sexually at
risk, I believe our first priority sust be to engage all women in practices
which will reduce the risk of HIV transmission. Women must be informed
about safer sex and - encouraged .to practice it. We may believe that

abstinence outside of marriage is the best protection and most appropriate

behavior for’ all individuals but I don't think that disagreement with that

 

 

 
 

 

philosophy should be a capital offense. If we don't teach women safer

practices, and provide ready access to condoms, then we will be condemning
many young women to exposure to a fatal illness. Education about risks
should be provided in a culturally appropriate manner.

Additionally all providers of women's health care must be enlisted in
efforts to prevent sexual transnission of HIV. Most woten who have a visit
to a women's health care provider, whether it be for family planning visit
or a routine checkuo, have no other health contact annually. Thus these
providers must assure that teaching safer sex becomes as much a part of
medical routine as checking a patient's blood pressure, taking 4 pap smear
or teaching breast self examination.

Lastly all these efforts to empower women's choices, engage then in
safe behaviors, and enlist all health workers in jJisease® prevention programs
are dependent upon strong anti-discrizination legislation. I have travelled
across this country to speak to women's health care providers and to urge
then to become involved, to counsel women and to offer HIV testing. I have
also cared for infected women through their pregnancies and have offered
many women tests for HIV infections. All these groups; providers, infected
women, women at risk, are concerned about testing and are distanced from
public health efforts because of their fears of the discriminatory sequelae
that can accrue to infected individuals. Until the health community and the
at-risk comsunity are assured that this country will not countenance

discrimination of any nature on the basis of serostatus, maximum efforts to

forestall the spread of disease to women and children will not be achieved.

 

 
 

 

I began by saying that I was physician in a sentinel community, I would
like to conclude by reninding you that a sentinel community is not a
community of biologic variants but rather a community of individuals
initially exposed to the virus. If our response to women and children now
getting infected in this community is merely to label them as a new "risk
group" and to again assure ourselves that AIDS has not entered the "general
population" then we may be witnessing the same Shortsightedness of which the
Reverend Neinoeller spoke in World War II when he said, "In Germany, they
came first for the communists and I didn't speak up because I. wasn't a
communist. Then they came for the Jews and I didn't speak up because I
wasn't a Jew. Then they cane for the trade unionists and I didn't speak up
because I wasn't a trade unionist. Then they cate for the Catholics ani I
didn't speak up because I was a Protestant. Then they came for me and by

that time no one was left to Speak up." It is time for all Americans to

speak up, get involved and acknowledge that HIV is a concern for everyone,

 
 

I have found that it creates less confusion if I first explain
what it is I do and who is the population with which I am
concerned. I am an obstetrician gynecologist with a specialty in
high risk pregnancies who takes care of pregnant addicted women.
My interest and concern for this population preceded the AIDS
dilemma. My concerns have always been how to improve the
obstetrical outcomes of this very needy group of women, most of
whom are women of color. AIDS and HIV infection has just added
an additional burden to an already over-burdened group of women.
And yet, when HIV is discussed in relationship to these women,
many fail to understand that they are women first and drug users
second. Because they are women first and mostly from cultures
where childbearing is highly regarded our present recommendations
for these women to delay or avoid childbearing altogether are
often not heeded. While we all understand the reasons behind
these recommendations, we tend not to understand why they are not
followed by these women. Historically we have not been able to
reach this population of women around other health issues. This
is the same population who is most likely to be adolescent
mothers. The same population who has the highest rates of low

birth weight babies and infant mortality. And, the same
population that is most likely to die from childbirth even before
AIDS. Yet many discuss this population as if it was new. We

are reluctant to admit that we have constantly failed these
women. In the past no one suffered from our failures except that
population. Now we fear if we fail everyone will suffer.
Perhaps this fear will allow us to put aside old theories and
approaches. Perhaps now we are willing to ask the women and
enlist their help in attacking this problem of AIDS. If we
aren't open and accepting of ideas that may not come from
traditional sources, I fear We will fail this population again.
Our recommendations and policies must not only be scientifically
sound but based in the reality of the many varied groups of wome’
we are trying to reach. We must also assure that decisions
concerning their reproductive health are made by them in their
best interest, not ours. That includes supporting in a sensitive
and non-judgmental way, that woman who decides to go through
with a pregnancy but also expediting services for the woman who
may chose to end a pregnancy. Remember the method of insurance
this population of women is most likely to have is medicaid.
Finally what is often ignored is that the addicted woman responds
to the idea of pregnancy as many other women who are at risk of
endangering their lives during pregnancy or producing a less than
perfect child. She is no different than the woman with diabetes
or heart disease who chooses pregnancy despite the
recommendations of her physician or the family with a known
genetic defect where the women decides to take the risk of
pregnancy. The desire to reproduce is an extremely strong one
and st be respected regardless of status of the woman.

My recommendations are as follows:
1. An increase in drug treatment programs with options of
methadone maintenance or drug free alternatives.
2.Funding to make these programs more comprehensive in their

 

 
 

 

health components, especially in the care Of pregnant
addicted women.

3.Research into the most effective ways of . educating
ethnically and culturally diverse groups.

4.The inclusion of.- women of color on-alIl policy making
committees at local, state, .national and international
levels. a

Submitted by:
Janet L. Mitehel1,M.D.,M.p<fi,_
December 18,1987

7s ¢
ny
~~

NAP ee

 

 
 

\ \wASADAD

 

TAGS
a

National Association of State Alcohol and Drug Abuse Directors

President
Chauncey L_ Veatch Ill
California

First Vice President
John Gustafson
New York

Vice President for Alcohol Abuse Issues
Lois Olson
Missouri

Vice President for Drug Abuse Issues
Richard Ham
Nevada

Past President
Anne D Robertson
Mississippi

Secretary
Robert Aukerman
Colorado

Treasurer
Wilham Pimentel
Rhode Island

Regional Directors

William Pimentel
Rhode Island

Richard Russo
New Jersey

Jack C Clohan. Jr.
West Virginia ‘

Michae! Townsend
Kentucky

Joseph E. Mills Il
Indiana

Paul T Behnke
Arkansas

Janet Zwick
lowa

Robert Aukerman
Colorado

Joyce Ingram-Chinn
Hawa

Jeffrey N Kushner
Oregon

Execunve Director
Wilham Butynski

TESTIMONY OF

JOSEPH E. MILLS III |
DIRECTOR
DIVISION OF ADDICTION SERVICES
STATE OF INDIANA

and
MEMBER OF THE BOARD OF DIRECTORS

NATIONAL ASSOCIATION OF STATE ALCOHOL AND
DRUG ABUSE DIRECTORS

before the

; PRESIDENTIAL COMMISSION
ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

on

‘

\

IV DRUG ‘ABUSE AND THE HIV EPIDEMIC
RISK REDUCTION/TREATMENT

DECEMBER 18, 1987

 

 

444 North Capitol Street, N.W. © Suite520 « Washington, D.C. 20001 « (202) 783-6868

 

 

 
 

 

Mr. Chairman and Members of the Commission:

Thank you for the invitation to appear before you today to address
risk reduction and treatment relating to intravenous (IV) drug abuse and
the human immunodeficiency virus (HIV) epidemic.

My name is Joseph E. Mills III. I serve as Director of the Indiana
Division of Addiction Services and am appearing before you today as a
member of the Board of Directors of the National Association of State
Alcohol and Drug Abuse Directors (NASADAD). NASADAD is a not-for-profit
organization whose membership is comprised exclusively of the State
officials designated by the Governors to administer the publicly-funded
drug and alcohol treatment and prevention programs.

Increasingly, demands for drug abuse services are being made by
thousands of individuals who are intravenous drug users. Many other drug
dependent persons are seeking treatment as a means of preventing their
infection with HIV and AIDS. These same individuals, however, are often
informed that treatment slots are unavailable, and that their names will
be added to a waiting list of approximately three to six months
duration. In fiscal year 1986, the States' publicly-funded treatment
programs could admit only about 100,000 to 150,000 intravenous drug
users. It is estimated that there are between 1 million and 1.5 million
intravenous drug users in the United States. Obviously, this means that
our treatment programs are only reaching about 10 percent of those s0
addicted.

Since about 95 percent of intravenous drug users share their needles
and works, they are in imminent danger of contracting and spreading HIV

infection through both needles/syringes and their sexual behavior. It is:

 
 

 

imperative that treatment capacity be immediately expanded to accommodate

a significantly larger proportion of intravenous drug uSers.

ACTIVITIES OF THE NATIONAL ASSOCIATION OF STATE ALCOHOL AND DRUG ABUSE
DIRECTORS !

The National Association of State Alcohol and Drug Abuse Directors is
currently participating in a contract from the National Institute on Drug
Abuse (NIDA). Under this project, NIDA supports National Capitol
Systems, Inc. (NCSI), of Falls Church, VA, and NASADAD in the development
of State policy options and recommendations on critical issues and needs
of the drug treatment system in addressing ang combatting this nation's
AIDS crisis. NASADAD is involved in Planning and implementing six
seminars during 1987-88 that bring together State Alcohol and Drug Abude
Agency Directors and other State staff experienced in drug treatment,
with NIDA and Centers for Disease Control (CDC) staff as well as others
with expertise in AIDS research, prevention, and treatment.

The primary responsibilities of these seminar participants is to
discuss and develop appropriate policy options and recommendations for
consideration by State, Federal, and local levels of government. The
recommendations from these seminars will be distributed to all State
Alcohol and Drug Abuse Agency Directors, as well as to interested
Governors, State and Federal Legislators, and executive branch agencies.

The following sections of this testimony provide background
information on risk reduction and treatment, describe a variety of
treatment issues, concerns, and recommendations, and similarly describe a
number of risk reduction issues, concerns, and recommendations as they

relate to IV drug abuse.

 
 

 

BACKGROUND ON RISK._REDUCTION AND TREATMENT

Recent studies of the homosexual population in the San Francisco
area, previously an area with the highest incidence of reported AIDS
cases, indicate that most members of the "gay" population, apparently,
have significantly reduced behaviors that place them at high risk of
contracting AIDS. At the same time, however, the occurence of AIDS in
the heterosexual population is increasing at an alarming rate. - Much of
this increase can be attributed to IV drug use and subsequent high risk
sexual behavior. . A

Drug abuse\is a ma jor health problem that has been dramatically
exacerkated by. the AIDS problem. It is generally recognized by experts
that the spread of AIDS in the heterosexual population is related to the
risk factor of IV drug use. U.S. Surgeon General C. Everett Koop
recently: stated, "The bottom line is that if you are going to contain
AIDS in the United States, you've got to. contain IV drug abuse." The:
sharing of needles/syringes is a prime risk activity associated with the
spread of HIV. The sexual partners of IV drug users, who may have
contracted HIV through needle sharing activities, are also at high risk.
of contracting HIV.»

Additionally, the use of alcohol and other drugs is a contributing
factor associated with risk behaviors that can transmit HIV. These
substances tend. to. reduce one's inhibitions and may cause one to act
irresponsibly in the short-term and participate in high risk behavior,
especially high risk sexual behavior. All of these co-factors--IV drug
use and alcohol and other drug substances--increase the chance of one's
participating in activities that place him or her at high risk of

contracting and/or transmitting HIV. For this reason, prevention of

 
 

alcohol and other drug abuse, not just IV drug use, is important in

preventing the spread of AIDS.

TREATMENT ISSUES, CONCERNS, AND RECOMMENDATIONS

Increasing drug treatment Capacity is one of the immediate and
pragmatic means by which the problem of HIV transmission can be reduced.
Treating more IV drug users, bringing them into treatment where they can
be educated and encouraged to change their behaviors, is highly
recommended by State Alcohol and Drug Abuse Agency Directors. Drug abuse
treatment programs in many areas of the country, however, are already
operating at capacity level or above, with inadequate resources for
expanding drug abuse treatment services now available. Additionally,
even when new Federal funds become available, Federal law prohibits the
use of these funds for construction, expansion, or renovation of
facilities. :

AIDS has fundamentally changed the nature and Scope of drug abuse

treatment, and has introduced new areas of emphasis within drug treatment

and service programs, e.g., the management of physically sick and dying

 

clients. Effective treatment includes assistance in accessing needed
health care for patients and families, and may involve on-site provision
of primary services or referral to a health care network. For those IV
drug abusers who are women of childbearing age, pregnant, or mothers,
drug treatment programs should provide, arrange, or develop services such
as pre- and post-natal care, family planning, and specialized child
welfare services. Effective treatment should also include particular
attention to minority, cultural, and women's issues, and should involve

Spouses and/or significant others whenever possible.

 
 

 

Still, drug treatment offers the best prospect for reducing high risk
behaviors and the transmission of HIV among needle substance abusers,
their sexual partners, and the perinatal transfer of HIV to newborn
children. Controlling the spread of infection among heterosexuals
through drug abuse treatment and outreach is a significant priority.

However, it is important to recognize that prevention of heterosexual
and perinatal transmission will be costly; more treatment is essential,
high quality must be maintained, and special targeted programs must be
developed. The cost, however, of treating drug abuse is ultimately far
less than the cost of treating AIDS. Federal and State officials should
review statutes, regulations, and funding mechanisms from an AIDS
perspective; modifications may be necessary sO that the drug abuse
treatment system can maintain the principles and integrity to provide
quality care-~not short-term, "quick-fix" solutions that do not
acknowledge the complexity of chemical dependency problems--and to.
prevent the spread of HIV infection. Humane, compassionate, and
effective treatment must be provided to the substance abuser with AIDS
and/or HIV infection.

On October 7 & 8 of this year, NASADAD held its first AIDS Policy
Seminar here in Washington, which focused on "Identification of Methods
to Increase Treatment Capacity for Drug Needle Users to Reduce the Spread
of HIV Infection." Recommendations were made in three areas: policy,
intervention, and treatment. A complete listing of these recommendations
and observations about AIDS and the treatment of intravenous and other
needle drug users is appended as Attachment I. However, several
recommendations are summarized below:

- All new Federal funding for AIDS should include a
designated priority for the drug user population.

 
 

 

- A significant increase in funding must be immediately
provided to expand drug abuse treatment services in all
modalities for addressing new dimensions which area. .
direct result of HIV infection and AIDS. |

~
- State and Federal resources should specifically adaveee
the needs of those populations at highest risk for HIV.
infection and AIDS, especially Black and Hispanic drug
abusers,

- Comprehensive HIV risk reduction and prevention programs
that include education and counseling on high risk
behaviors which may result in HIV infection should be
provided to all clients and their families in the alcohol
and drug abuse treatment system.

- Federal constraints on the use of funds to construct,
expand, and renovate physical facilities for drug

treatment must become more flexible in order to respond
to increased treatment Capacity needs.

RISK REDUCTION ISSUES, CONCERNS, AND RECOMMENDATIONS

On December 2-3, 1987, the second NASADAD AIDS Policy Seminar was
held on the subject of "AIDS Prevention and Risk Reduction Behaviors for
IV Drug Users," Representatives from the District of Columbia and
eighteen states attended, many of them with high incidences of AIDS cases
and HIV seroprevalence rates among IV drug users in treatment. The State
,Alcohol and Drug Abuse Agency Directors and State arug experts
participating in this seminar formulated several policy options \and
recommendations they consider key to an effective strategy for
prevention, risk reduction, and behavior change in reducing the spread of
HIV.

First, it should be understood that risk reduction means behavioral
changes. There are many elements involved in plotting a successful
Strategy for assisting people to change their behavior. Education is but
one component, and it should be an ongoing and persistent process.

Education alone, however, does not necessarily change behavior.

 

 
 

 

Education and targeted information, coupled with intervention. and
treatment, are more likely to produce the desired behavior change.

Cultural differences may be significant in behavior change
education. The role of cultural expectations for males and females in
the fathering of children and in childbearing may not yet be given
appropriate consideration in some efforts to produce changes in sexual
behavior among heterosexuals, especially in some minority populations.
The use of any contraceptive, and specifically the barrier type, i.e.,
the condom in conjunction with the spermicide Nonoxynol 9, does not fit
the traditional role in some cultures of potent/macho man and fertile
woman, one of whose primary purposes is that of having and rearing a
family.

This is a powerful factor when considering that both the Black and
Hispa sic populations in our society are the hardest hit by AIDS: more
than 50 percent of women with AIDS are Black; more than 25 percent of
women with AIDS are Hispanic; and more than 90 percent of children with
AIDS are either Black or Hispanic. One specific recommendation developed
at our most recent NASADAD AIDS Policy Seminar was as follows:

- Recognition of cultural sex role expectations is
essential in prevention of HIV transmission. Condom use
and other aspects .of sexuality, intimate relationships,
and childbearing involve cultural value issues that must
be approached with sensitivity.

In addition, educational materials need to be age-appropriate and
audience-specific. Drug programs must incorporate not only sexual
transmission education, but also support for behavior change, ©-9+,r
role-playing, support groups, and skill-building, all of which are
integrated into the program regimen. Further, the prevention of sexual

and perinatal transmission of HIV may also involve working with sexual

partners and with children.

 
 

 

The following interim recommendations for a sound HIV/AIDS prevention

and risk reduction strategy for Federal, State, and local levels were

formulated at the December 2-3 seminar. They have not yet been formally

reviewed and accepted by NIDA, NCSI, or participants. We will be pleased

to share the final revised recommendations with the Commission when they

are completed.

The Alcohol, Drug Abuse, and Mental: Health Services Block
Grant to States should be increased to provide for AIDS
prevention and risk reduction programs.

Every State should establish a commission, advisory body,
or task force actively addressing AIDS prevention and
risk reduction. This body should be representative of
consumer groups and special populations.

State Agencies need to view AIDS as a family issue and
implement prevention, risk reduction, and family support
strategies where alcohol and other drug abuse is involved.

Every State Alcohol and Drug Abuse Agency should have
policies and procedures to insure adequate AIDS
prevention and risk reduction training and staff support
for its own staff, direct service providers’ staff, and
administrators. This training should be available to
other health care providers.

Every State Alcohol and Drug Abuse Agency should have
policies, procedures, and a designated coordinator to
insure that providers have AIDS prevention and risk
reduction as part of their programs.

State Alcohol and Drug Abuse Agencies need to establish
coordination with State and, where appropriate, local
agencies or units of government that relate to AIDS
issues.

The State Alcohol and Drug Abuse Agency should be
responsible for public education, including targeted
campaigns for specific populations about AIDS as it
relates alcohol and other drug use.

States should mandate inclusion of AIDS education in
health education curricula.

Epidemiological data collection on IV drug use should be

standardized, with all States participating in its
deve lopment and implementation.

~.

 
 

 

- State Alcohol and Drug Abuse Agencies should be notified
' ona timely basis of all Federal funding that is
available for AIDS prevention and risk reduction.

Though only two of the six NASADAD AIDS Policy Seminars have been
held thus far, additional seminars will address topics such as
confidentiality and testing, the impact of AIDS on the minority community
and barriers to treatment, existing and proposed legislation, emerging
case law related to AIDS issues, mandatory treatment,
post-hospitilization care and linkages with housing facilities and the
U.S. Department of Housing and Urban Development, and the criminal
justice system and AIDS/IV drug use issues. State Alcohol and Drug Abuse
Agency Directors have joint responsibility with NASADAD in addressing
these issues and in developing and implementing appropriate
recommendations. We will be happy to share the individual seminar
reports and the final overall report with the Commission.

Again, thank you for the opportunity to share this information with

you. We will be pleased to provide any additional information or

clarification that may be needed by the Commission.

 

 
 

ATTACHMENT I.

NATIONAL ASSOCIATION OF STATE ALCOHOL AND DRUG ABUSE DIRECTORS
(NASADAD)

AIDS POLICY SEMINAR ON

IDENTIFICATION OF METHODS TO INCREASE. TERATMENT CAPACITY FOR
| NEEDLE DRUG USERS |
TO REDUCE THE SPREAD OF HIV INFECTION

OCTOBER 7-8, 1987

WASHINGTON, DC

POLICY OPTIONS AND RECOMMENDATIONS

NASADAD
Suite 520
444 North Capitol Street, NW
Washington, DC 20001
(202) 783-6868

 

 

 
 

 

SUMMARY: NASADAD AIDS POLICY SEMINAR ON
_ IDENTIFICATION OF METHODS TO INCREASE TREATMENT CAPACITY
FOR DRUG NEEDLE USERS TO REDUCE THE SPREAD OF HIV INFECTION

Washington, DC
\ October 7-8, 1987

The National Association of State Alcohol and Drug Abuse
Directors (NASADAD) held the first of six AIDS (acquired
immunodeficiency syndrome) Policy Seminars, October 7-8, 1987, in
Washington, DC, in conjunction with National Capitol Systems, Inc.
(NCSI), and the National Institute on Drug Abuse (NIDA). The
NASADAD AIDS Policy Project is designed to assist State Alcohol and
Drug Abuse Agency Directors formulate State policy options and
recommendations for addressing part of this nation's current AIDS
crisis through drug abuse services.

This first seminar focused on the IDENTIFICATION OF METHODS TO
INCREASE TREATMENT CAPACITY FOR DRUG NEEDLE USERS TO REDUCE THE
SPREAD OF HIV (human immunodeficiency virus) INFECTION.
Representatives from eight State Alcohol and Drug Abuse Agencies
attended and contributed to the seminar goal of developing a
consensus statement of significant actions and options to be
distributed to all State Alcohol and Drug Abuse Agency Directors, as
well as to other appropriate sources (e.g., NIDA, other executive
branch agencies, Governors, State Legislators). The background
statements and recommendations presented here represent the
consensus of the majority of those participating, and do not
necessarily reflect individual views. The recommendations are
followed by highlights from the seminar presentation (see Appendix
A) and by a list of seminar participants and attendees (see Appendix
B).

BACKGROUND ON THE IMPACT OF AIDS ON THE IV DRUG ABUSE TREATMENT
SYSTEM

Fundamental premises and observations about AIDS and the
treatment of intravenous and other needle drug users were
identified. While the first six are descriptive, the latter six
tend to be prescriptive. It is recognized that:

1. drug abuse is a major health problem that has been
dramatically exacerbated by the AIDS problem;

2. AIDS has fundamentally changed the nature and scope of drug
abuse treatment, and has introduced new areas of emphasis
within drug treatment and service programs, primarily the
Management of physically sick and dying clients;

 

 
 

 

-2-

certain activities are known to transmit HIV; these
activities, called "high risk behaviors," include the
sharing of needles/syringes and other drug paraphernalia,
and engaging in sexual practices whereby the exchange of
body fluids can pass the virus from one person to another;

needle drug abusers are known to participate in "high risk
behaviors;" drug and alcohol abusers are considered to be
at higher risk than the general population because of their
lifestyles and other co-factors (e.g., the impact on the
immune system of the drug or alcohol abuse itself; poor
health and nutrition; prostitution; criminal activity);

drug treatment offers the best prospect for reducing "high
risk behaviors" and the transmission of HIV among needle
substance abusers, their sexual partners, and the perinatal
transfer to newborn children;

the drug treatment system is primarily a rehabilitative
System, and those suffering from AIDS and ARC (AIDS-related
complex) need other essential services that are provided
through other health care systems. While the majority of
these services should continue to be provided directly by
other health care systems through affiliation with and
referral from drug treatment programs, the delivery of some
primary health care services for clients with HIV can
appropriately be provided by drug treatment programs;

the AIDS crisis has highlighted the need for a broader
range of available treatment options for substance abusers,
particularly the needs of women with children, dually
diagnosed individuals, and other individuals for whom
traditional methadone, drug-free, and other treatment
modalities have been either insufficient or ineffective. A
variety of treatment options and regimens should be
available to meet the specific needs of individual clients;

there currently exist inadequate resources for addressing
the AIDS crisis through drug abuse treatment services and
facilities; drug abuse treatment programs in many areas of
the country are already operating at capacity level or
above;

Federal and State officials should review statutes,
regulations, and funding mechanisms from an AIDS
perspective. Modifications may be necessary so that the
drug abuse treatment system can maintain the principles and
integrity to provide quality care--not short-term,
"quick-fix" solutions that do not acknowledge the
complexity of chemical dependency problems--and to prevent
the spread of HIV infection. Humane and compassionate
treatment must be provided to the substance abuser with
AIDS and/or HIV infection;

 
 

 

10.

ll.

12.

- '
yo .
o - “ ‘ 3~
i . 7
.
r

the availability of new medications and medical advances

- that prolong arid improve the quality of life for people
“with AIDS must be insured for drug treatment clients;

every drug treatment program, in view of the AIDS epidemic,

must have an AIDS risk reduction education and prevention
component’ that includes not only information related
specifically to IV drug users, but also information on
sexual transmission, reducing risk behaviors, and the risk
to unborn children;

a variety of drug antagonists and therapies (e.g., LAAM,
buprenorphine, and others with effects that last for 48 to
72 or more hours) should be tested and appropriatly
utilized with drug needle users.

RECOMMENDATIONS FOR ACTION

Specific recommendations for increasing the capacity for
treating drug needle users in an effort to reduce the spread of HIV
infection were categorized into three areas: policy, intervention,
and treatment.

Policy Recommendations

l.

To reduce the problem of drug abuse in this country and to
prevent the spread of AIDS, Federal, State, and local
governments should employ every possible means to
significantly expand drug abuse treatment capacity so that
treatment is available and accessible to all who are in
need of these services.

A significant increase in funding must be provided to
expand drug abuse treatment services in all modalities for
addressing new dimensions which are a direct result of HIV

infection and AIDS.

All new Federal funding for AIDS should include a
designated priority for the drug user population.

State and Federal resources should specifically address the
needs of those populations at highest risk for HIV
infection and AIDS, especially Black and Hispanic drug
abusers.

Drug treatment programs should have a policy of active
outreach to State and community health and human service
agencies in order to expand the support services needed for
AIDS and HIV positive clients, and serve as referral
resources to and from the alcohol and drug abuse treatment
system.

 

 
 

10.

 

-4-

The AIDS crisis has introduced new issues to drug treatment
programs, issues related to death and dying, sex education,
and the control of infectious disease, which increase the
need for trained staff to work with clients who have HIV
and/or AIDS; significantly increased resources must be
directed to provide ongoing AIDS education, training, and
clinical and personal support of drug treatment program
staff who work with AIDS clients.

Comprehensive HIV risk reduction and prevention programs
that include education and counseling on high risk
behaviors which may result in HIV infection should be
provided to all clients and their families, when possible,
in the alcohol and drug abuse treatment system.

HIV testing should be offered, but not required, for drug
abusers; test results should always be confidential and
kept separate from the client's medical and social
records. Testing should always include both pre- and
post-counseling sessions.

Pre-enrollment testing for HIV infection as a condition for
health insurance should be prohibited. States should
assist drug treatment programs with insurance liability
questions and issues.

Federal constraints on the use of funds to construct,
expand, and renovate physical facilities for drug treatment
must become more flexible in order to respond to increased
treatment capacity needs.

Intervention Recommendations

l.

Resources need to be expanded for outreach services in two
major areas: (a) outreach to encourage needle drug abusers
to enter treatment (and thus eliminate or reduce their
needle sharing behavior); and (b) outreach to educate.
needle drug abusers on a variety of risk reduction
behaviors,. ranging from information on not sharing and
Cleaning needles, to information on effective means to
lessen the risk of HIV transmission from and to sexual
partners. There is a need to work with addicts to change
their behavior, and to specifically target the female
addict of childbearing age. Such outreach may be
accomplished through strategies such as the training and
use of indigenous persons or recovering addicts as street
workers, the use of mobile vans and/or innovative methods
such as the distribution of vouchers for reduced treatment
cost or other incentives that allow needle drug abusers to
immediately enter and obtain free drug detoxification
and/or treatment services. .

 
 

 

-5-

~~

Outreach to new and existing referral systems, such as

clinics for the treatment of sexually-transmitted diseases

(STD), health and welfare systems, prenatal clinics, the

criminal justice system, and AIDS crisis networks and
coalitions, should be instituted by the substance abuse
system and maintained on a regular basis.

In order to ensure the provision of the most effective and
cost efficient treatment services, a high quality, in-depth
assessment of every client must be conducted, an
individualized treatment plan developed, and a tiered
system of care, ranging from detoxification to follow-up
monitoring and aftercare services, must be established.

Treatment Recommendations

l.

The drug abuse treatment system should provide
comprehensive services, including multidisciplinary teams
to provide improved medical, educational, clinical, and
social services for clients. The arrangement and ,
acquisition of essential medical and other services for
intravenous substance abusers with HIV infection is a
time-consuming and difficult process. Therefore, drug
abuse treatment programs also should consider the use of
special case managers as part of their treatment teams to
perform this important service.

The drug abuse treatment system should increase access and
become more flexible, so that it is able to respond to the
individual level of treatment needs for each client: some
clients may not need the specified number of counseling ©
sessions that routinely have been required, while others
may have more intensive counseling needs. Therefore, the
system should be flexible, should include a comprehensive
assessment of each client, and should adopt a case
management approach with plans and treatment regimens
tailored to specific, individual client needs.

Alternative methods of drug abuse treatment and services
should-be-explored. These may include an extension of
clinic hours, the provision of off-site counseling
services, expanded availability of counseling services in
hospices and criminal justice institutions, the use of
mobile service units, and the creation of new clinic sites,
perhaps within other systems of care.

 

 
 

 

APPENDIX A

HIGHLIGHTS OF PRESENTATIONS

OVERVIEW OF NATIONAL INSTITUTE ON DRUG ABUSE: ACTIVITIES REALTED TO
AIDS; Roy W. Pickens, Ph.D., Director, NIDA Division of Clinical
Research

The focus of NIDA involvement is on drug abuse--not infectious
disease problems associated with drug abuse. The main objectives
are: 1) to encourage addicts to come into programs for treatment,
and 2) to insure that addicts have information on AIDS and on
methods to reduce the risk of transmitting HIV to themselves and/or
to sexual partners.

NIDA's goal also is to insure adequate and improved treatment
Capacity. Currently, there is a critical need for expanding
treatment capacity, and $163 million have been appropriated for this
purpose. The continuation of this expanded effort should be a
primary consideration in future budgets.

A major concern of drug abuse treatment today is the challenge
of how the system will cope with the AIDS crisis. NIDA-funded
activities in response to this challenge include:

research into better treatment and outreach strategies,
better after-care efforts, and improvement of prevention
efforts to prevent AIDS in intravenous (IV) drug users;

research in immunology to determine why some drugs depress

the immune system while others make it easier for the body to
contract AIDS--one question about methadone treatment: is |
whether or not this form of treatment makes it easier for the ©
AIDS virus to attack the immune system;

epidemiologic studies and surveillance activities to
determine the prevalence of HIV among IV drug users; - $10
million has been funded to support community demonstration
projects for seroprevalence studies and outreach to IV drug
users not in treatment.

OVERVIEW OF THE EPIDEMIOLOGY OF AIDS AND IV DRUG USE AT SELECTED
SITES; W. Robert Lange, M.D., Medical Director, NIDA Addiction
Research Center

In summarizing recent findings from ongoing NIDA and other
studies on HIV seroprevalence among IV drug users in treatment, Dr.
Lange noted that the only significant factors in seroprevalence
documented to date are geographic and ethnic variables. There is a
great difference among geographic areas in HIV seroprevalence rates
for IV drug users in treatment in 1986 and early 1987:

 
 

 

-7-

New York City (Brooklyn and Harlem) _ * 61 percent
Baltimore 7 C 29— «8
Denver 5 "
San Antonio 2 "
Los Angeles/Riverside/San Bernadino/Bakersfield 1.5 "
Tampa/St. Petersburg 0 "

Black and Hispanic IV drug users in several areas have shown a
higher HIV seroprevalence than White IV drug users: New York City,
San Francisco, New Jersey, Baltimore, Denver, and Connecticut.

There does not appear to be any clear cut significance relating
to methadone dosage ‘and the possibility of HIV incidence. One idea
for limiting the spread.of HIV in the addict community is through
limited mobility. Making disinfectant material or information about
disinfectants available to people is another alternative, but this
is relatively controversial.

OVERVIEW OF THE CENTERS FOR DISEASE CONTROL (CDC) ACTIVITIES RELATED
TO AIDS; T. Stephen Jones,-M.D., Medical Epidemiologist, CDC Center
for Prevention Services

cpC has been working with NIDA in an effort to provide funding
to drug treatment centers. CDC funds’ have traditionally been
channeled to State health/departments, and CDC wants to encourage a
closer working relationship between State health departments and
drug treatment programs. ?

/

An additional $28-30 million has been used for epidemiologic
studies, gathering data on seroprevalence of HIV in the U.S. In
early November, CDC and NIDA will report their findings on
seroprevalence to the White House Domestic Policy Council.

There are several new programs of involvement for an on-going
monitoring mechanism for seroprevalence: STD (sexually-transmitted
diseases) clinics, womens' health clinics (i.e., family planning,
abortion, WIC [women, infants, children], prenatal), PKU blood. spots
(seroprevalence in neonates). CDC is in the process of establishing
50 programs in 30 selected SMSAs for testing "blinded" samples of
blood from clients entering the clinic. This would also include
counseling and testing of air drug clients.

CDC also has funding for AIDS prevention grants to State health
departments. However, additional priority should be given to the IV
drug user group. |

Additional funding sources need to be explored, and there is a
need for training of medical workers for “hands on" work with those
having HIV and AIDS. :

 
 

a
-g-—

PANEL PRESENTATION AND DISCUSSION OF STATE METHODS TO INCREASE
TREATMENT CAPACITY; Linda Lewis, Administrator, Alcohol and Dru
Abuse Programs, Florida Department of Health and Rehabilitative
Services; Francis McCorry, Ph.D., Special Assistant to the Director
New York State Division of Substance Abuse Services; William T,
Atkins, Director, Illinois Department of Alcoholism and Substance
Abuse

Florida has a concentration of IV drug users in the southern
part of the State. It expects to have 32,000 cases of AIDS and is
interested in expanding treatment Capacity quickly. Maintaining the
integrity and quality of treatment while expanding treatment
Capacity is a primary goal, and the relaxation of restraints on
funds for building and renovating facilities is equally important.
Florida also has a need for facilities with beds for treating women
with children.

In New York State, there are approximately 250,000 IV drug
users, of which 200,000 are located in New York City. There is
tremendous community opposition to drug treatment facilities. New
York also has a long-term detoxification program called KEEP (Key
Entended Entry Program), however, little is being done for people
who test positive for HIV: the system can barely deal with those
who have AIDS. Education on condom usage and cleaning of IV
equipment is an important preventative method.

Illinois has a fairly large AIDS problem. The State is
developing holding clinics for dispensing methadone, and there is
expansion of evening and weekend hours. Some thought is also being
given to revising the rules for those who violate drug treatment
program requirements, who would normally be expelled from a
treatment program to return to the street, essentially for continued
drug use. Shortening the length of stay in a program and expansion
of central intake are needed. Case management would also be an
important component. Illinois is also the recipient of one of
NIDA's demonstration grants. Fifteen percent of people in alcohol
treatment programs have some prior history of IV drug use.

 

 
 

-9-

APPENDIX B : we a

* | SEMINAR PARTICIPANTS

State representatives who participated in the seminar were:

William T. Atkins, Director Linda Lewis, Administrator
Illinois Department of Alcoholism Alcohol and Drug Abuse Program
and Substance Abuse Florida Department of Health and

Rehabilitative Services
Robert Baxter

Project Coordinator Francis McCorry, Ph.D.
AIDS Community/Drug Services Special Assistant to the Director
New Jersey Division of Narcotic New York State Division of

and Drug Abuse Control Substance Abuse Services
Richard Ham, Chief Dave Mulligan, Director
Bureau of Alcohol and Drug Abuse Massachusetts Division of
Nevada Department of Human Substance Abuse Services

Resources

cs Jeannine Peterson

Simon Holliday, Chie Deputy Secretary for Drug and
D.c. Office of Heal Planning Alcohol Programs

and Development * Pennsylvania Department of Health

‘OTHER SEMINAR ATTENDEES

if

Others who attended the seminar were:

Carol Anglin, Consultant Jody Forman, Project Officer
Washington, DC Office of Justice Programs
Bureau of Justice Assistance
. Karst Besteman U.S. Department of Justice
Executive Director Washington, DC
Alcohol and Drug Problems
Association

Washington, DC
From NCSI:

Brenda Cuccherini, Ph.D. Douglas R. Mackintosh, Dr.P.H.
Project Director | Vice President
AIDS Technical Assistance to

SSAs and Treatment |Programs

From NIDA:
Zili Amsel, Ph.D. John Dougherty, Ph.D.

Research Epidemiologist Research Psychologist
Division of Clinical Research. Division of Clinical Research

 

 
 

 

-10-

AngeIo Bardine Joel Egertson, Chief
Division of Epidemiology and Policy and Legislative Branch
Statistical Analysis
Sander Genser, M.D.
Robert Battjes, D.S.W. Division of Clinical Research
Division of Clinical Research

Ann Blanken Arnold Mills, Project Officer
Division of Epidemiology and AIDS Policy Project
Statistical Analysis Division of Clinical Research

Beth Steel, Program Analyst
Policy and Legislative Branch

From NASADAD:

[4

William Butynski, Ph.D. Christopher Paegre

Executive Director , Director of Prevention
Services

Diane Canova, J.D. ae
Director of Public Policy Sondra A. Nelson
AIDS Policy Project Director

Ken Robertson
Technical Assistance and
_ Training Coordinator

1

 

 
 

 

TESTIMONY OF

KARST J. BESTEMAN
EXECUTIVE DIRECTOR
ALCOHOL AND DRUG PROBLEMS ASSOCIATION

BEPORE THE

PRESIDENTIAL COMMISSION ON
THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC

DECEMBER 18, 1987
PANEL #8
ROOM 628
DIRKSON SENATE OFPICE BUILDING

 

 
 

 

Dear Mr. Chairman:

Thank you for the invitation to appear before this
Presidential Commission to discuss risk reduction strategies and
the treatment of needle using and needle sharing drug abusers in an

effort to control and contain the spread of AIDS.

The Drug Abuse Treatment community is acutely aware and
concerned with the high risk behaviors and infection rates in many
parts of the country among needle sharing drug abusers. Serum
positive screening of admissions to treatment programs in the
northeast has indicated very high base-line rates. In some
communities this rate is well over 50 per cent. Other parts of the
country enjoy rates in the single digit range. The fact is that
higher infection rates and the spread of the disease continues

unabated among the needle sharing drug abusers.

Initially this population was not identified as a substantial
point of contagion. As a better understanding of AIDS and a
clearer perception of the patterns of spread were developed, the

drug treatment community experienced an increased concern.

At the local level many responses were initiated. They are
only partial solutions and national leadership and direction has
been lacking. At the federal level the National Institute on Drug

Abuse (NIDA) sponsored a series of policy discussions to examine

 

 

 
 

 

2
alternatives. Technical reviews, position papers, meetings, news
bulletins, and training sessions have all been sponsored by the
National Institute on Drug Abuse. State governments, joined by
Private efforts have generated educational materials, community

education efforts and intervention by outreach workers.

Guidelines for patient care, Staff protection, and
confidentiality protection have all been developed and extensively
Shared. Most professionals express the view that if there is a
history of needle-use it is prudent to assume the presence of the

virus.

The Alcohol and Drug Problems Association is proposing that
all clinical and administrative staff in addiction programs receive
education and training to equip them to work realistically and
effectively with patients who may be HIV positive. | We recommend
that drug treatment programs offer voluntary testing to patients
with pre and post-testing counseling. We Strongly urge patients
and staff to deal openly with the shared denial and avoidance to
most effectively protect themselves and their family from possible

infection by the virus.

There is within the ADPA membership a serious concern that the
drug abuse treatment system will be designated by default to become
a hospice system for addicts with AIDS. The history of publicly

funded drug treatment is characterized by fiscal restraint.

 

 

 
 

 

a

Personnel in publicly. ‘funded ‘programs are paid modest salaries to
work with the most debilitated and difficult patients. To expect
these already burdened programs to expand the type, quality, and
scope of care provided without some significant adjustment of
resources and specialized training is unrealistic. Existing
treatment programs, particularly therapeutic communities report an
extraordinary level of caring and energy being expended by staff
and other patients on behalf of the AIDS patients receiving drug
treatment. As that number grows and the service demand expands the

drug treatment functions are in danger of being overwhelmed.

The public and public policy makers must understand that
offering drug abuse treatment which is readily accessible will
decrease high-risk behavior. The commitment to change drug-taking
behavior offers and opportunity to teach low-risk "safer"
activities in all aspects of life including minimizing the risk of
contracting and spreading AIDS. MThe drug treatment system's
capacity has been stagnant or diminishing for the last decade. The

presence of the AIDS virus within the needle-sharing population is

 

justification enough for increased resources targeted to this high-
risk behavior and to the service system designed to treat addicted

people.

There are some encouraging indicators. In a few communities
the distribution of information and materials to clean needles and

diminish the practice of needle-sharing has produced early
 

 

4
favorable data regarding changes in behavior. There must be a more
wide-spread effort to engage the needle-sharing drug abuser in
Protecting their own health. The extent to which public health
efforts and practices have been marketed and Presented to the
needle-sharing drug abuser is minimal when evaluated nationally.
There appears to be a reluctance to assume that the addicted person

will comprehend, care, and change if given the opportunity.

The addictions field has been very active in addressing theses
issues. One of the best state-wide programs of information and
training has been sponsored by the Illinois Alcoholism and Drug

Dependence Association:

628 East Adams Street Suite 204
Springfield, I 62701

James E. Long, Executive Director

I would recommend that its activities be featured as an example
of a valuable state association effort. Additionally, material
urging staff training and patient counseling is being
distributed and discussed regularly within both the trade and

professional literature.

 
 

 

5

  

The most important decision to be made is that containing,
eradicating, treating and ultimately curing AIDS is the priority.
Assuming that to be true then an aggressive expansion of drug
treatment with out-reach and marketing targeted on the needle-
sharing drug abuser is a priority strategy. We would urge you to

recommend this as part of your final report.

 
 

 

THE AIDS-ADDICTION INTERFACE AND_ METHADONE

A_QUESTION OF ALTERNATIVES

Testimony before the
Presidential Commission on the Human
Immunodeficiency Virus Epidemic

December 18, 1987
Washington, D.C.

Robert G. Newman, M.D.
President, Beth Israel Medical Center
New York, New York

 

 

 
 

INTRODUCTION

It is a privilege to be asked to testify before this Commission,
which is charged with developing policy recommendations to deal
with the terribly difficult problem of AIDS. Beth Israel Medical
Center, which I have the honor to serve as Chief Executive
Officer, has been in the forefront of AIDS treatment and
investigation from the time this disease entity was first
identified; it has also been providing substance abuse treatment
longer, and on a far greater scale, than any voluntary hospital
in the United States. Over 7,600 former heroin addicts are
receiving methadone maintenance treatment in clinics operated by
Beth Israel. In addition to this out-patient program, the

oN Medical Center has 180 beds in discrete units dedicated to the
ereatment of chemical dependency and associated diseases.

\

.

When ‘one considers the closely related problems of AIDS and

heroin addiction, it is easy to become overwhelmed by a sense of
gloon and hopelessness. The fact is, however, that a great deal
can be done - and therefore must be done. My specific plea today |
is that all forms of addiction treatment be expanded promptly. |
we know from waiting lists which exist in cities across the
country that there is a desperate need and demand for treatment.
And we know that treatment of narcotic addiction - through

methadone maintenance and through other modalities - can have a

major impact on the spread of the AIDS virus. The time to act is

now!

 
 

 

Let's review the facts:

There are a great many individuals who inject heroin
several times each day. It does not Matter precisely
how many such individuals there are. What does matter
is that they exist, that they inject themselves with
illicit ‘drugs two, three or more times each day, and
that in doing so they put their lives and the lives of
others - addicts as well as non-addicts - in mortal

jeopardy.

Among these addicts there are many who want to give up
heroin use, and need help to do SO. It does not matter
how large a proportion of the addict population these
individuals represent, nor what motivates them to
discontinue injection of the drug, nor why - or even
whether - they can not do so on their own. The fact is
that such addicts exist, that they themselves perceive
the need for help, and that without help they will

almost certainly continue to take heroin.

| It is the rule rather than the exception that efforts .

by addicts to obtain treatment are thwarted. In cities
throughout the United States, addicts who desperately -

want treatment are "placed on Waiting lists" - a

 

 
 

 

euphemism for being forced to continue drug use because

the programs to which they apply are full.

4. The complex problem of narcotic addiction clearly
demands a broad spectrum of therapeutic options.
However, only methadone treatment can be expanded

rapidly, and on the scale which is necessary.
METHADONE MAINTENANCE TREATMENT

Methadone maintenance has been extraordinarily successful in
reducing heroin addiction and its related ills in this country
and throughout the world. Its success has been documented time
and again, in communities in Europe, Asia, Australia and North
america. With regard to AIDS, methadone is today the best means
at our disposal to reduce the spread of the virus among addicts,

and from addicts to the general population.

Based on this world-wide experience, methadone maintenance over
the past 22 years has won increasing acceptance by the medical
community and the public for its effectiveness in treating heroin
addiction, and for the numerous associated benefits to society at
large. Through methadone maintenance treatment, tens of
thousands of former heroin addicts have been freed from

dangerous, illicit drug use, and have been enabled to resume

 

 
 

 

/
normal, healthy, productive lives. They are in our community

a
today as successful members of society.

Nevertheless, many misconceptions persist, and there continues to
be intense controversy over this therapeutic approach.
Tragically, while the experts, the politicians, the concerned
community members debate, people are dying! We can not allow
ourselves to be distracted from the one and only question which
really matters: is the provision of methadone treatment better
for the patient and for the society than the continued use of
heroin? It is my opinion that the major arguments raised by
critics of methadone treatment are\ ot relevant to this

Se To illustrate:

fundamental and all important question. NS

1. “Methadone treatment merely involves

\

substituting one
drug for another." This is a semantic question, and
reflects the inability or unwillingness to recognize
the diametrically opposite effects of heroin, as used
by addicts, and methadone, as prescribed for patients.
But whether we call methadone a "drug," a "substitute
narcotic" or simply a needed and effective "medica-
tion," the question remains: is the provision of
methadone treatment better for the patient and for the

society than the continued use of heroin?

 

 
 

 

"Methadone treats the symptoms of the disease, but not:

t
the disease itself." Let us assume that this is true

(as indeed it is true of a very great many other
medical treatment regimens). Clearly, eliminating the
symptoms of a problem can have much the same positive
impact as eradicating the underlying cause.‘ But: in any
event, the question remains: is the provision of
methadone treatment better for the patient and for the

society than the continued use of heroin?

"Methadone, a medication, can not resolve the many
social problems associated with addiction, such as
unemployment, chaos in the family, disenchantment with .

societal values, etc." Although improvement in all

‘these areas - and others - has been demonstrated to be

associated with methadone treatment of heroin
addiction, it is certainly true that limitations exist.
The question remains, however: despite its limitations,
is the provision of methadone treatment better for the
patient and for the society than the continued use of

heroin?

"Methadone may be an effective medication for addiction
to narcotics, but it has no pharmacological effect on

the possible excessive use of alcohol, or the abuse of

 

 
 

 

cocaine or other drugs." True. These pharmacological
limitations exist. But the question remains: is the
provision of methadone treatment better for the patient

and for the society than the continued use of heroin?

5. "Methadone distributed under governmental auspices, or
at least with the official approval of Government, |
could be used as a form of social control of addicts."
Agreed. And indeed the same observation applies to |
every governmental benefit, whether it be health
insurance, unemployment benefits, assistance to the
elderly or homeless, etc. But the question remains,
even in the face of this potential danger: is the
provision of methadone treatment better for the “patient

and for the society than the continued use of heroin?

6. "Methadone treatment would signal to the general
population that society condones drug use." Maybe such
a fear is justified, maybe it is not. In either case,
the same question remains: is the provision of
methadone treatment better for the patient and for the
society than the continued use of heroin?

I can not believe that there exists among the members of the

Commission suspense regarding my answer to the rhetorical

 
 

question I have repeatedly posed. To me it appears to be
absolutely self-evident that the answer must be an emphatic and
unqualified yes! I can conceive of nothing worse than refusing
addicts treatment - any treatment - as an alternative to
continued heroin use. I say this without seeking to hide or
apologize for any of the limitations which clearly do apply to
methadone treatment (as well as to every form of addiction
treatment which has ever been introduced). Indeed, it is
difficult for me to imagine what criticism of methadone
treatment, justified or unjustified, could lead to the conclusion
that addicts and society are better off if junkies are left to

shoot heroin.

=p

METHADONE TREATMENT AND ITS IMPACT ON AIDS

\

|A study has just been reported whom Bergamo, Italy. HIV
antibodies were found in 53% of addicts hospitalized for
illnesses other than AIDS, as of addicts arrested, and 433 of

therapeutic\ community member's. In dramatic contrast, the sero-
\

positivity rate among patients receiving methadone maintenance

for at least six months was only 21% (1) \
\ ; \
\ : 7 \
\ \ \
What was just reported from Italy is consistent with evidence

from the United Statés. It was found that wi \ - fewer than 10%

of heroin addicts ‘who entered methadone maintenance treatment

\ \ \ \

 

 

 

 
 

 

programs in New York City prior to 1978 are antibody positive for
the human immunodeficiency virus, compared with 60% of heroin

addicts who did not enter treatment."!2)

Of course, the sero-positivity rate among untreated addicts is
already extremely high. But even with regard to these
individuals there is much that methadone maintenance can do to
lessen the further spread of the disease. In addition to
lessening IV drug use and the potential for Spread to as yet
uninfected addicts, methadone patients have been shown to be very
responsive to health education and reduction in high-risk sexual
as well as drug using behavior. For instance, in the methadone
Program conducted by my own hospital, over 300,000 condoms were
distributed in the course of six months. Obviously, methadone
patients use condoms for the same purpose as everyone else, and
thus it seems self-evident that they indeed are practicing safer

sex and thereby protecting both themselves and their partners.

CONCLUSION

The field of addiction treatment has for years been characterized
by polarization and controversy. This is not all bad, since the
intensity with which providers of service advocate a particular
approach reflects in large measure an uncompromising dedication

and commitment which is to be commended. But today, as never

 

 
 

 

before, it is imperative that we stop arguing over irrelevancies,
and focus instead on how to lessen the pain, suffering and costs
associated with addiction. Perhaps the tragedy of AIDS will be
the impetus for change, as we recognize the fact that narcotic
addicts are the second largest group in our society to be
afflicted, and the number one group from whom this disease is

being spread to the, heterosexual - and infant - population.
| s

|

In the face of this reality, it is simply mind-boggling that

throughout the United States, every day and in every major city,

\

as a matter of course, addicts are denied access to treatment -
\

treatment which they desperately want ,. and which we know can help
them. Thousands of these addicts cohtinue to inject heroin
several times each day, and t ereby pose a fatal threat to
themselves and impose enormous ‘costs on the health, well-being

\

\ \
and safety of avery member of our society. To condemn them - and
\

qurseiyes - to the continued devastation associated with heroin
addiction by refusing to make treatment available is a terrible
mstakee\ Beestnen for all is a realistic goal. It must be

pursued! ‘It must be achieved!
N\

‘

 

 
 

 

BIBLIOGRAPHY

Tidone L, Sileo F et al: AIDS in Italy. American Journal
of Drug and Alcohol Abuse 13(4):485-486, 1987

Schuster CR: Substance Abuse. Journal of the American ~

Medical Association 258(16):2269-2271, 1987

a

 
 

BETH ISRAEL MEDICAL CENTER _ FIRST AVENUE AT 16TH STREET. NEW YORK, NY 10003 (212) 420-2000

 

THE METHADONE MAINTENANCE TREATMENT PROGRAM
OF BETH ISRAEL MEDICAL CENTER, NEW YORK, NEW YORK

BETH ISRAEL MEDT ENTER: _BACKGRO

The earliest mission of Beth Israel Medical Center, founded in
1889, was to meet the urgent health care needs of a new wave of
Jewish immigrants to America. Beth Israel has since grown to
become a tertiary care hospital that provides. high-quality —
treatment and compassionate care for people of.every race and
creed. The Medical Center has 934 beds, 5,000 employees and a
medical staff of 1,000.

Beth Israel is a major teaching hospital, affiliated with the
Mount Sinai School of Medicine. Its patient care, research and
teaching capabilities are further enhanced by affiliations with
the The Rockefeller University, and with Doctors Hospital.

For more than two decades, Beth Israel‘s Methadone Maintenance
Treatment Program (MMTP) has been on the front line of the fight
against narcotic addiction. It was at Beth Israel that Dr.
Vincent Dole and Dr. Marie Nyswander originally demonstrated the
feasibility of very large-scale application of their successful
experience with methadone administered to heroin addicts in the
research environment of Rockefeller University.

With 7,600 voluntary patients, who make 1.2 million visits
annually to 23 community-based clinics throughout the City, the
Beth Israel MMTP is the largest drug treatment program of any
kind in the country.

The -MMTP has had outstanding success in providing effective
long-term treatment. Among thousands of patients in Beth
Israel's program, the rate of continued narcotic abuse is less
than 7 percent. And while methadone maintenance is first and
foremost a medical response to a medical problem, it has had an
extraordinary influence on associated social ills that affect the
quality of life in the community. .

~~

I

NTRAVENO DR ABUSE AND AID

Epidemiologists estimate that there are 500, 000 narcotic addicts
in the United States today, most of them heroin‘users, and
approximately 250,000 in New York City. Life for untreated
addicts is extremely bleak: unemployment, unstable family

(more)

 

AFFILIATED WITH MOUNT SINAI SCHOOL OF MEDICINE MEMBER OF FEDERATION OF JEWISH PHILANTHROPIES.

 

 
 

 

2/MMTP at Beth Israel] Medical Center

relationships, criminal activity, poor health, and early death
from overdose, hepatitis, endocarditis--and now AIDS.

Intravenous drug users spread the AIDS virus (HIV) to other drug
users by sharing contaminated needles, to their sexual partners
by unprotected sexual activity and to the fetus during pregnancy.
The incidence of AIDS among these individuals is increasing
faster than in any other high risk group. Children of drug users
account for the overwhelming majority of infant AIDS cases.

Acceleration of the Crisis

In 1982, the first year in which AIDS was identified among MMTP
patients, there were three deaths attributable to AIDS in the
Beth Israel program. Only four years later, there were 88 known
AIDS-related deaths in the program. A recent study conducted by
the New York City Health Department concluded that 53 percent of
all AIDS-related deaths in the City involved intravenous drug
users. Currently, 269 of the former heroin addicts enrolled in
Beth Israel's methadone program have been diagnosed as having
AIDS - an average of over 11 cases per clinic.

Despite the massive expansion of the treatment Capacity which has
occurred since Beth Israel‘s pioneering involvement in methadone
treatment delivery, the demand for treatment remains largely
unmet. Addicts must wait two to four months ‘or longer to enter
programs -- both methadone and drug-free. -During this period
they are likely to continue to use drugs -- and spread the AIDS
infection.

h r *s L i

In response, Beth Israel has recently inaugurated several new
Programs to accelerate admission, to demonstrate that treatment
with fewer regulatory restrictions can be effective, and to
expand services to the homebound.

Rapid Admissions: In 1986, the growing AIDS problem led to the
approval by the New York State Division of Substance Abuse
Services of MMTP's request to admit patients into a special
six-week “holding stage" of treatment. During that period, 654
new patients received methadone, even though the program was
already operating at 115 percent of capacity. The Rapid
Admission patients were absorbed into the regular counseling
caseloads as openings occurred. The one-year retention rates of
these patients (70 percent) compared favorably with the record of
patients who received full counseling services from the outset
(79 percent), demonstrating that even limited treatment is a
valuable step toward rehabilitation.

(more)

 
 

3/MMTP at Beth Israel Medical Center

Interim Methadone Clinic: Following the success of the Rapid
Admissions process, the U.S. Centers for Disease Control funded
MMTP’s Innovative AIDS Risk Reduction Research Project and the Food
and Drug Administration approved the establishment of an Interim
Methadone Clinic. Since February 1987, this clinic has been
providing methadone treatment without supportive counseling service
to applicants on the MMTP waiting list, as an alternative to
continued heroin use, which is the typical fate of applicants while
they remain on “waiting lists." Preliminary evaluation shows that
most patients reduce or eliminate their intravenous drug use,
thereby reducing the risk of receiving or spreading the-AIDS virus.

f ients with AIDS: The program has inaugurated a
team approach to providing multi-faceted care for all patients with
AIDS and other HIV-related illnesses. In addition to the methadone
treatment and any necessary backup medical care, AIDS patients
benefit from a system of supervisory, liaison, advocacy,
consultation, referral and networking services. Every clinic has a
designated AIDS Coordinator, and every MMTP patient receives basic
education about AIDS, how the virus is transmitted and ways to
prevent infection. AIDS supervisors and social workers act as
consultants to clinic staff and are an experienced resources for all
health and social services at Beth Israel and throughout the City.

During inpatient stays at Beth Israel, the MMTP patient is assisted
by the Inpatient Care Coordinator, who helps with case management
issues, serves as liaison between inpatient staff and the clinic,
and ensures that the patient receives all necessary entitlements.

For AIDS patients who are homebound, the MMTP provides a special
Homebound Social Worker, who helps construct an effective homecare
plan and visits all patients weekly.

'

ni n : The MMTP conducts an
intensive educational program to make the community as well as
patients aware of the dangers of acquiring and transmitting the
AIDS virus. AS part of Manhattan's "AIDS Week” in November, 1987,
family members and friends of patients were invited to participate
in the educational programs, conducted in English and in Spanish.

1601a871216

 

 
 

 

BETH ISRAEL MEDICAL CENTER © ~ | FOR IMMEDIATE RELEASE

 

 

Carol Rubiano

%

™
FIRST AVENUE AT 16TH STREET, NEW YORK, NY 10003 CONTACT: = (212) 420-2069

FOR RELEASE FRIDAY, DECEMBER 17

 

MAKE TREATMENT AVAILABLE IMMEDIATELY
TO ALL ADDICTS WHO WANT IT,
DRUG ABUSE EXPERT TELLS

PRESIDENT'S AIDS COMMISSION
WASHINGTON -- The head of the nation's largest drug treatment
program told the President‘s AIDS Commission that methadone
maintenance treatment is “the best single weapon at our disposal to
reduce the spread of the AIDS virus among addicts, and from addicts’
to the general population.”

Robert G. Newman, M.D., president of Beth Israel Medical Center
in New York City, and a leading expert on the treatment of heroin
addiction, said "We can and must respond to the closely related
problems of AIDS and heroin addiction by expanding all forms of
treatment. We know from waiting lists which exist in cities across
the country that there is a desperate need and demand for treatment.
And we know that treatment of narcotic addiction -— through methadofié
maintenance treatment and through other modalities -- can have a |
major impact on the spread of the AIDS virus. The time to act is
now!”

Dr. Newman said that methadone maintenance treatment, pioneered
at Beth Israel Medical Center 22 years ago, “has been extraordinarily

successful in reducing heroin addiction and its related ills in this

(more)

 

 
2/Immediate Treatment for Addicts

country and throughout the world. Its success has been documented
time and again, in communities in Europe, ASia, Australia and North
America. It is also today the best Single weapon at our disposal to
reduce the spread of the AIDS virus among addicts, and from addicts
to the general population.”

Dr. Newman said methadone treatment had won increasing acceptance
by the medical community and the public for its effectiveness in
treating heroin addiction. °Through methadone maintenance
treatment,” he observed, “tens of thousands of former heroin addicts
have been freed from dangerous, illicit drug use, and have been
enabled to resume normal, healthy, productive lives. They are in our
community today as successful members of society.”

Dr. Newman acknowledged the controversy that persists regarding
methadone treatment noting that “while the experts, the politicians,
the concerned community members debate, people are dying.” Newman
urged the Commission to endorse expansion of treatment capability so
that addicts throughout the nation may be offered an immediate

therapeutic alternative to the next shot of heroin.

1602a871217

‘(es

 

 

 
 

TESTIMONY OF DR. GEORGE DE LEON TO THE
PRESIDENTIAL COMMISSION ON THE HUMAN
IMMUNODEFICIENCY VIRUS EPIDEMIC

PUBIC HEARINGS, DECEMBER 18, 1987

SUBMITTED BY
GEORGE DE LEON, Ph.D
DIRECTOR OF RESEARCH AND EVALUATION
PHOENIX HOUSE, NEW YORK

 

 
 

 

ALTHOUGH QUR CURRENT UNDERSTANDING OF DRUG ABUSE TREATMENT
IS QUITE INCOMPLETE TWENTY YEARS OF RESEARCH AND CLINICAL
EXPERIENCE HAS BEEN EXTRAORDINARILY PRODUCTIVE. WE NOW POSSESS A
KNOWLEDGE BASE THAT CAN WISELY INFORM POLICY AND PLANNING WITH
RESPECT TO AIDS. IN THE BRIEF TIME ALLOTTED, I WILL CONFINE
MYSELF TO SUMMARIZING WHAT WE KNOW ABOUT DRUG ABUSE TREATMENT
PARTICULARLY WITH RESPECT TO IV USERS.

ADDICTION AND ADDICTS

DRUG ABUSE IS A DISORDER OF THE WHOLE PERSON INVOLVING
MULTIPLE AREAS OF FUNCTIONING. COGNITIVE, BEHAVIORAL, AND
MEDICAL PROBLEMS ARE EVIDENT ALONG WITH MOOD DISTURBANCES.
THINKING MAY BE UNREALISTIC OR DISORGANIZED. VALUES ARE
CONFUSED, NON-EXISTANT OR ANTI SOCIAL. FREQUENTLY, THERE ARE
OTHER DEFICITS-VERBAL, READING, WRITING, OR LACK OF MARKETABLE
SKILLS.

PHYSICAL ADDICTION MUST BE SEEN IN A WIDER CONTEXT OF THESE
PROBLEMS. PHYSIOLOGICAL DEPENDENCY 1S SECONDARY TO THE MANY
SOCIAL AND PSYCHOLOGICAL DEFICITS THAT ACCUMULATE WITH CONTINUED
SUBSTANCE ABUSE.

THUS, THE PROBLEM IS THE PERSON NOT THE DRUG. ADDICTION IS
A SYMPTOM NOT THE ESSENCE OF THE DISORDER. CHEMICAL
DETOXIFICATION IS BUT A FIRST STEP IN RECOVERY. REHABILITATION
IS A LONG-TERM PROCESS WHICH FOCUSES ON MAINTAINING PRO SOCIAL
BEHAVIOR AND MINIMIZING RELAPSE TO CHEMICAL DEPENDENCY.

WHO ARE THE ADDICTS? ALTHOUGH THE SPECTRUM OF IV ABUSERS IS
WIDE AND INDIVIDUAL DIFFERENCES EVIDENT, DRUG ABUSERS SHARE
IMPORTANT SIMILARITIES. EITHER AS CAUSE OR CONSEQUENCE OF THEIR

ABUSE, MOST REVEAL FEATURES OF PERSONALITY DISTURBANCE AND

 

 
 

Po

IMPEDED SOCIAL FUNCTION. THEY DISPLAY POOR TOLERANCE FOR
FRUSTRATION, INABILITY TO DELAY GRATIFICATION, DIFFICULTIES IN
SUSTAINING RESPONSIBLE BEHAVIOR IN THEIR SOCIAL, INTERPERSONAL OR
WORK LIVES, PROBLEMS WITH CONTROLLING IMPULSES AND COPING WITH
DISTURBANCES IN MOOD AND EMOTIONAL LIFE. FOR MANY, PARTICULARLY
AMONG THE LONG-TERM ANTI SOCIAL SUBSTANCE ABUSERS, THERE ARE
FATALISTIC OR CYNICAL ATTITUDES CONCERNING CHANGE OR RECOVERY.

ADDITIONALLY, THERE ARE SOCIO-ECONOMIC ELEMENTS. THE IV
USER'S PLACE IN SOCIETY CAN BE CONTRASTED WITH THE HOMOSEXUAL
COMMUNITY WHICH IS ALSO AT HIGH RISK FOR AIDS. THEY HAVE NO
ORGANIZED, ACCEPTABLE, POLITICAL CONSTITUENCY. THUS, GENERALLY
MORE DISAFFILIATED FROM THE MAINSTREAM, IV USERS ARE MOST
RESISTANT TO CHANGE.
TREATMENT EFFECTIVENESS

IS TREATMENT FOR DRUG ABUSE EFFECTIVE? IN GENERAL THE

ANSWER TO THIS QUESTION IS YES.

 

A CONSIDERABLE LITERATURE DOCUMENTS THE EFFECTIVENESS OF THE
FOUR MAJOR TREATMENT MODALITIES FOR SUBSTANCE ABUSE:
DETOXIFICATION, METHADONE MAINTENANCE, DRUG FREE OUTPATIENT
SETTINGS, AND RESIDENTIAL THERAPEUTIC COMMUNITIES (TCs). EACH
MODALITY IMPACTS THE ABUSER IN A DIFFERENT WAY AND THE
EFFECTIVENESS OF EACH MUST BE EVALUATED IN TERMS OF ITS PRINCIPAL
AIMS.

THE PRINCIPAL AIM OF DETOXIFICATION IS THE ELIMINATION OF
PHYSIOLOGICAL DEPENDENCE THROUGH MEDICALLY SAFE PROCEDURES.
ITS SECONDARY OBJECTIVE IS TO REFER THE DETOXIFIED CLIENT TO

OTHER MODALITIES FOR FURTHER TREATMENT. THIS MODALITY SHOWS

 
 

VIRTUALLY NO. MORTALITY OR MORBIDITY. SAFE WITHDRAWAL FROM
PHYSIOLOGICAL DEPENDENCY IS ACHIEVED IN WELL OVER 90% OF
ADMISSIONS TO DETOXIFICATION (NEWMAN, 1979). OCCASIONALLY LONG
TERM CESSATION OF OPIATE ABUSE FOLLOWS, BUT RELAPSE IS THE RULE
AND REHABILITATIVE EFFECTS ARE RARE.

THE PRINCIPAL AIM OF METHADONE MAINTENANCE IS TO PERMIT THE
ADDICT TO SUSTAIN A PROSOCIAL LIFESTYLE UNDISTRACTED BY THE
ILLEGAL: PURSUIT OF NARCOTICS. ABSTINENCE IS NOT A PRIMARY GOAL,
ALTHOUGH IT EVENTUALLY OCCURS FOR SOME CLIENTS.

IF EFFECTIVENESS IS DEFINED IN TERMS OF HEROIN AND METHADONE
ABSTINENCE, LESS THAN 10 % ARE JUDGED SUCCESSFUL TEN YEARS AFTER
TREATMENT (DES JARLAIS ET. AL, 1976). MOST CLIENTS FOLLOWED SHOW
HISTORIES OF RECURRENT RELAPSE THROUGH ILLICIT USE OF HEROIN OR
ILLICIT METHADONE, ALCOHOL ABUSE AND/OR CRIMINALITY. WHEN SUCCESS
INCLUDES THOSE REMAINING ON LEGAL METHADONE, HOWEVER, RESULTS ARE
CONSIDERABLY BRIGHTER. ONE YEAR RETENTION RATES’ IN PROGRAMS
RANGE FROM 40 % TO 75 %, THE HIGHEST AMONG ALL MODALITIES. ABOUT
40 % OF METHADONE CLIENTS IN THE NATIONAL SURVEY SAMPLES REVEAL
MAXIMALLY FAVORABLE OUTCOMES (EMPLOYMENT, NO ARRESTS, HEROIN
ABSTINENCE AND CONTINUED LICIT METHADONE). (SEE FIG. 1) | THUS
METHADONE MAINTENANCE OFFERS AN EFFECTIVE TREATMENT FOR BLOCKING
ILLICIT OPIATE DEPENDENCY. MOREOVER, ITS ANCILLARY SERVICES CAN
FACILITATE REHABILITATIVE EFFECTS FOR A NUMBER OF _OTHERS, . IF
ABSTINENCE IS EXCLUDED AS A CRITERION FOR SUCCESS. .

DRUG FREE OUTPATIENT CENTERS INCLUDE A . DIVERSITY OF
AMBULATORY AND DAY CARE PROGRAMS. THESE OUTPATIENT SETTINGS HAVE
EVOLVED INTO A MODALITY PRIMARILY SERVING NON-OPIATE, ALCOHOL

AND/OR POLYDRUG DRUG ABUSERS AND MORE RECENTLY COCAINE ABUSERS.

 

 
 

 

TREATMENT GENERALLY EXCLUDES PHARMACOTHERAPY, EMPHASIZING
COUNSELING (INDIVIDUAL AND GROUP), EDUCATION, FAMILY THERAPY AND
MORE RECENTLY, BEHAVIORAL TRAINING TECHNIQUES AND SELF HELP
GROUPS.

EVALUATING THE EFFECTIVENESS OF DRUG FREE OUTPATIENT
TREATMENT HAS PROVED TO BE MORE DIFFICULT BECAUSE OF THE WIDE
VARIETY OF PROGRAMS, CLIENTS SERVED, AND APPROACHES UTILIZED.
NATIONAL SURVEY STUDIES, HOWEVER, REVEAL MAXIMALLY FAVORABLE
OUTCOMES ARE ESTIMATED TO BE ABOUT 33 % (SEE FIG. 1). SUCCESS IN
REDUCING ILLICIT DRUG USE OCCURS PRIMARILY IN THE WELL SOCIALIZED
DRUG ABUSER. HOWEVER, RESEARCH INDICATES THAT THERE IS LITTLE
EFFECT ON ALCOHOL OR MARIJUANA ABUSE. THE EFFECTIVENESS OF THESE
CENTERS FOR COCAINE ABUSE REMAINS TO BE ASCERTAINED. OVERALL
THIS MODALITY IS NOT SEEN AS PARTICULARLY APPROPRIATE FOE THE
LONG-TERM IV OPIATE ABUSER, THE MORE ANTISOCIAL DRUG ABUSER OF ANY
SUBSTANCE (HUBBARD ET AL., 1984).

DRUG FREE RESIDENTIAL THERAPEUTIC COMMUNITIES VIEW ABUSE OF
ANY DRUG AS SELF DESTRUCTIVE BEHAVIOR, REFLECTING PERSONALITY
PROBLEMS AND/OR CHRONIC DEFICITS IN SOCIAL, EDUCATIONAL AND
MARKETABLE SKILLS. ITS ANTECEDENTS LIE IN SOCIAL-ECONOMIC
DISADVANTAGE, POOR FAMILY EFFECTIVENESS OR IN PSYCHOLOGICAL
DISTURBANCE. REHABILITATION, THEREFORE, REQUIRES MULTIDIMENSIONAL
INFLUENCES AND TREATMENT WHICH FOR MOST CAN OCCUR ONLY IN A 24
HOUR, LONG TERM RESIDENTIAL SETTING (DE LEON, 1986A).

FOR TRADITIONAL LONG TERM THERAPEUTIC COMMUNITIES, NATIONAL
SURVEYS INDICATE THAT 40 % OF CLIENTS ACHIEVE MAXIMALLY FAVORABLE

OUTCOMES (NO CRIME AND NO ILLICIT prRuUG USE). (FIG. 1).

 
 

THE INTERNATIONAL JOURNAL

OF THE Addictions

 

 
 

‘ The International Journal of the Addictions

The) Intemational Journal of the Addictions, presents authori:
“tative; “comprehensive reports on the serious problems brought upon
. individuals and communities by drug, alcohol, and tobacco use,

: “jabuse, and dependency; Representing a world-wide network of com: '
* ‘munications on research, training, and treatment, the journal consti-
‘tutes an interdisciplinary foram for the exchange of both essential .
;- ‘theory and empirical information presented in a form that‘can be ©
': easily read.and understood by non-professionals as well as medical _
practitioners. This important publication provides original papers, - |
” abstracts, reports of community programs, and book and audio- -
visual reviews that focus on the legal and social aspects of addiction,
as well as on medically oriented topics.

 

 

 
 

 

The International Journal of the Addictions, 20(6&7), 823-844, 1985

The Therapeutic Community:
Status and Evolution

George De Leon,* PhD

Phoenix House Foundation
New York, New York 10023

Abstract

This paper depicts the current status of the North American TC drawn
from research and practical experience. The history, model, and per-
spective of the TC are briefly outlined and key research findings re-
viewed. Implications for further research and clinical issues are dis-
cussed, as are broader considerations concerning the future of TCs.

The TC is an experiment 20 years in progress. Despite vicissitudes of eco-
nomic cycles, swings in society’s perception of drug abuse, and shifts in public
policy, the TC has survived. Though still evolving, it has established itself as a
significant alternative approach to the treatment of drug abuse.

This paper depicts the current status of the North American TC drawn
from research and practical experience. The history, model, and perspective of
the TC are briefly outlined, and key research findings are reviewed. Implications
for further research and clinical issues are discussed, as are broader considera-
tions concerning the future of TCs.

HISTORY

Since the 1960s the range of substances used has increased and the spectrum
of drug abusers has widened. Federal policy in the United States encouraged the

*address correspondence to the author’ Director of Research and [ valuation, Phoenix
House Foundation, 164 West 74th Street, New York, New York 10023.

823
Copynght © 1985 by Marcel Dekker, Inc. 0020-773X/85/2006-0823$3.50/0

 

 

 
 

 

824 " DE LEON

_ development of a variety of interventions based upon the rational perspective
“that no single approach could embrace individual differences among users 01
. drug use patterns. Four ‘major treatment modalities emerged, detoxification,
methadone maintenance, outpatient settings, and drug-free residential thera-
peutic communities (TCs). Each has its views and assumptions about drug
abuse and each impacts the abuser in somewhat different ways. Fundamental to
the TC view is that individual change must occur through self-help in 2 commu-
" nakliving milieu to render stable modification of self and socially ‘destructive
" patterns of behavior. cot eT,

The prototype of the modern therapeutic community is ancient, existing in
all communal forms of healing and support. It was found, for example, in the
apostolic religious groups and primitive tribal healing rites. Modern self-help
antecedents include the Oxford group, the Washingtonians, and Alcoholics
Anonymous (see Glaser, 1974).

Residential facilities for psychiatric patients were established in England
during the late 1940s, notably under the leadership of Maxwell Jones (1953). In
this pioneering work, both treatment and residential management became the
shared responsibilities of patients and staff. The name “therapeutic community”
evolved in these psychiatric settings.

. Therapeutic communities for substance abuse appear a decade later than do
the TCs in psychiatric settings. The two models evolved independently, reflect-
ing some differences in staffing, social organization, and clients served. An essen-
tial distinction between the two, however, is the context of their beginnings.
Psychiatric TCs illustrate a quite extraordinary attempt to transform the en-
vironment, role relations, and practices within established hospital institutions.
TCs for substance abuse evolved essentially ourside of existing services delivery
systems (see De Leon, 1983; Jones, 1953, 1980). Notwithstanding their differ-
ences, however, recent trénds potentiate on eventual rapprochment between
these two contemporary models, a point further elaborated in other papers
which provide detailed discussions of both models (e.g., De Leon, 1983; Jones,
1980; Sugarman, 1981; Zimmer-Hoefler, 1981).

Although therapeutic communities for substance abuse are primarily North
American phenomena, they have proliferated across Europe and more recently
in other regions of the world. These drug-free residential facilities, though “cul-
ture specific,” have adapted either the Jones model or the TC of addictions.

THE THERAPEUTIC COMMUNITY MODEL AND PERSPECTIVE

| The “therapeutic community for substance abuse" is a generic term describ-
ing a spectrum of over 500 residential programs. Though diverse in size and
clientele served, about a third of these programs incorporate the regime of tra-

 
 

THE THERAPEUTIC COMMUNITY 825

ditional therapeutic communities (e.g., Daytop Village, Phoenix House, Gateway
House, etc.).

The traditional TC provides a residential setting for drug abusers, criminal
offenders, and the socially dislocated. Its basic goal is to offer a complete
change in life-style which includes drug abstinence, elimination of antisocial
(criminal) behavior, development of employable skills, and the acquisition of
positive attitudes, values, and behaviors which reflect honesty, responsibility,
nonviolence, and self-reliance.

While the optimal residential stay varies across programs, traditional TCs
(those founded in the mid-1960s) require at least 15 months in residence before
the phase of reentry, separation, termination, or graduation. However, some
TCs have incorporated shorter periods of stay (e.g., 6 to 12 months) based upon
client need and progress.

Traditional TCs have accommodated a broad spectrum of drug abusers,
mainly male (80%), White (60%), and in their mid-20s (50%). They originally
attracted a majority of opiate addicts. Currently, however, over 60% of TC
clients are nonopiate abusers (CODAP, 1979; De Leon, 1980). Thus, this mo-
dality responds to clients with drug problems of varying severity and different
life-styles, and from different economic and ethnic backgrounds.

Fuller accounts of the TC's perspective on drug abuse disorder, the client,
and recovery are provided in other writings (De Leon, 1981, 1984a). Briefly,
the TC views drug abuse as deviant behavior, reflecting impeded personality
development and deficits in social, educationa, and economic skills. Its antece-
dants may lie in socioecongmic disadvantage, poor family effectiveness, and in
psychological factors. In this perspective, substance abuse is a disorder of the
whole person. Addiction is a symptom, not the essence of a disorder. The prob-
lem is not the drug, but the person. The goal of treatment is a global change in
the individual through an integration of conduct, feelings, values, and attitudes
associated with g procuctive, drug-free life-style.

‘Although drug abuse arises\from personal and social conditions. recovery
is always the responsibility of the individual. The structure and practices of the
TC facilitate self-help change thrqugh sequenced stages of learning, charactennzed
as growing up or maturation. Its social organization is a family surrogate system,
vertically stratified. Primary staff, clinical and custodial, are paraprofessionals,
consisting of ex-offenders or ex-drug addicts successfully rehabilitated in thera-
peutic community programs. Ancillary staff include educational, mental health,
and vocational service professionals as well as fiscal administrators and medical
and legal personnel. |

The daily regimen is full’ and varied, including encounter group therapy,
tutonal-learning sessions, remedial and formal educational classes, specia! pro-
jects, residential job functions, and in the later stages, conventional occupa-

 

 
 

 

826 DE LEON

’ tions for clients in 2 living-out situation. Completion of all phases of the regime
"marks. the end of treatment but signifies the beginning of continued change.

RESEARCH AND EVALUATION®

. Recent years have witnessed 2 burgeoning of research and evaluation in-
volving therapeutic communities. These have mainly involved long-term tradi-
" ‘onal TCs, although other varieties have also beerr studied. The em phasis of re-
. search has been upon ‘treatment outcome; however, there has been some investi-
gation of retention and treatment process. .

’ Treatment Outcome

The effectiveness of therapeutic communities has been evaluated, primarily
through follow-up studies. Many of these have been executed by investigative
teams engaged in large-scale modality comparisons that include therapeutic
communities. Others have been conducted on and by individual TCs.

Practically all of the single-program studies reveal that both the immediate
and the long-term outcome status of the clients followed are significantly im-
proved over pretreatment status. Drug use and criminality decline while mea-
sures of prosocial behavior (employment and/or school involvement) increase
(e.g., Barr and Antes, 1981: Brook and Whitehead, 1980; De Leon, 1984:;
De Leon et al., 1979; Holland, 1978, 1983: Pompi et al., 1979; Wilson and Man-
delbrote, 1978).

Differences between clients who complete (graduates) and drop out of
treatment indicate that on all measures of Outcome, the graduates were signifi-
cantly better than dropouts. Among the latter, however, there is a positive
relationship between favorable outcome and length of stay in treatment (e.g.,
Barr and Antes, 1981; Coombs, 1981; De Leon, 1984a; De Leon et al., 1982;
Holland, 1978, 1982; Wilson and Mandelbrote, 1978).

"~veral studies have utilized a global index of outcome based upon self-
rep. : employment, opiate use, or primary drug use, and criminal activity.
.'Int :. maximally or moderately favorable outcome occurs in approximately

shalf of the clients followed ‘(e.g., Barr and Antes, 198}; De Leon, 1984a). Suc-
. Cess rates increase in direct relation to length of stay (see Fig. 1).

These social adjustment findings have been obtained in larger-scale multi-
modality efforts that included therapeutic communities (Bale et al., 1980;
Burt et al, 1979; Sheffet et al., 1980; Simpson and Sells, 1982). The magnitude
- Of changes varies, and some studies did not obtain length-of-stay differences

.. (€.g., Brook and Whitehead, 1980; Burt et al., 1979).

°This section is drawn from a review of TC research published elsewhere (De Leon. 1984b).

 
 

“THE THERAPEUTIC COMMUNITY - / 827

10 0 Success

 

@Que® 1970-71 Conort

 

 

PER CEN T

ay
UW70e71 Cehert N= 18 Ne 10 N23) NS 32 w= to Nels Ne 33

<1 1-4 5-8 «9-12 13-16 174+ Grad

O74 cehert Ma 13 “sn 10 Mee N18 Me Ow IO CN
MONTHS IN PROGRAM

Fig. 1. Success and improvement rates: Comparisons between the 1970-1971 and 1974
cohorts through 2 years of follow-up for male opiow abusers. Success (no drugs and
no crime) and improvement rates by tume in program (TIP). There ase no significant
cohort differences at any point on the curve, revealing a striking replication of the
time-in-program function (see De Leon et al., 1982).

|

 

 
 

 

828 - » DELEON

"+ Psychological adjustment is a primary goal of therapeutic communities,
but this domain appears in only a few. outcome studies (e.g., Brook and White-
“head; 1980; De Leon, 1984a; De Leon and Jainchill, 1981; Kennard and Wilson,
1979). In these, psychological scores significantly improve at follow-up, a find-
ing obtained in all of the investigations reviewed as well as those Outside of the
. United “States. "Phoenix House studies have demonstrated a direct correlation ©
* between social’ adjustment (success rates) and psychological adjustment at 2-
' year follow-up (De Leon, 1984a; De Leon and Jainchill, 1981). | * - ,
: Does treatment outcome relate to client factors? Studies have focused
‘upon predicting outcome status from client background characteristics, pre-
treatment variables, and time in treatment in TCs (e.g., Burt et al., 1979; De
Leon, 1983b; Holland, 1978; Simpson and Sells, 1981). These have identified a
few correlates of the separate outcome variables: lower lifetime criminality,
higher educational level, and lower levels of drug and alcohol use in the months
prior to treatment (e.g., De Leon, 1983b; Simpson and Sells, 1982). Though
significant, however, these associations were small when compared with the ef-
fects of time spent in treatment in the TC, and, with the exception of criminal
activity, client background variables do not consistently predict successful
status measured with the composite index (e.g., De Leon, 1983p).

Retention

The most consistent predictor of successful outcome in TCs has been length
of stay in treatment. This finding stressed the need to understand retention as a
phenomenon in its own right. Notwithstanding the importance of this issue,
however, research has not systematically investigated the three main retention
questions: What are the retention rates? Who are the dropouts? And, why do:
clients leave or remain in treatment? Reviews of retention studies have been
published (e.g., Baekland and Lundwall, 1975; Brook and Whitehead, 1980; -
Cole et al., 1981; De Leon and Schwartz, 1984; Joe, 1976). The main findings
and conclusions from these investigations can be briefly summarized.

Most studies of retention have vocused on ciient characteristics. Correlates

‘of retention have been weak and sporadic. Longer time in treatment has been

related to opioid abusers, non-Hispanics, and clients with longer histories of pre-
vious attempts at ceasing drug use. :

Generally, however, social background (lifetime) characteristics have not
predicted long-term retention, with the exception of less severe criminal involve-
ment. Client status in the months Prior to treatment does relate to retention.
For example, those under legal pressure, or whose health or life-style appears to
have worsened, reveal somewhat longer durations of stay in TCs (Condelli, 1985;
De Leon, 1983b; Holland, 1982).

 

 
 

 

THE THERAPEUTIC COMMUNITY 829

Similarly, psychological characteristics fail to predict overall retention in
treatment, although psychological factors appear to be important. For example,
several investigations indicate that early dropouts reveal higher levels of psycho-
logical dysfunction measured with standard paper-and-pencil instruments (De
Leon et al., 1973; Sacks and Levy, 1979; Wexler and De Leon, 1977; Zuckerman
et al., 1975). Recently completed multivariate studies at Phoenix House suggest
that clients who showed less detensiveness and less denial of problems remained
longer in treatment (De Leon, 1983b).

Psychological scores at admission have relatively low predictive power.
However, one impressive finding obtained in a recent investigation involving 3
consortium of therapeutic communities revealed a striking relationship between
psychological change during treatment and overall retention. Individuals) who
psychologically improved within the first several months after admission showed
a significantly greater likelihood of continuing their stay in treatment (De Leon,
19802). This finding has obvious implications for clarifying the relationship be-
tween client progress and retention.

Overall, no typical client profile has emerged which predicts length of stay
in treatment. This conclusion is confirmed in multimodality investigations of
client predictors of dropout (Burt et al., 1979; Sheffet et al., 1981; Simpson
and Joe, 1977). For example, the DARP studies conclude that patient charac-
teristics are not strong predictors of retention in any treatment modality (Joe,
1976).

Retention rates in therapeutic communities have received some attention
in the literature (e.g., Brook and Whitehead, 1980; De Leon and Schwartz, 1984;
Glaser, 1974; Sansone, 1980). Generally, these studies agree in revealing a rather
high dropout rate in therapeutic communities.

Research findings indicate that the pattern of retention in long-term thera-
peutic communities is orderly and predictable. Annual retention rates vary
across TCs, but the shape of the retention curve remains uniform (see Fig. 2).
Dropout is highest within the first 15 days of admission and declines sharply
thereafter such that the likelihood of dropout decreases with length of stay it-
self (Fig. 3). The lawful retention curve has obvious implications for treatment
planning in TCs.

Why clients drop out of treatment, however, is a question that has not been
adequately investigated, although several research teams are currently exploring
this aspect of retention. Hypotheses concerning client reasons for dropout have
been offered mainly from clinical impressions (e.g., Baekland and Lundwall,
1975; De Leon and Rosenthal, 1979. Heit and Pompi, 1977; Sansone, 1980).

In Phoenix House follow-up studies, analyses of clients’ retrospective rea-
sons for dropout distributed equally between those relating to program prob-
lems (e.g., conflict with staff, views of treatment) and those that were more
personal (e.g., wanted to continuc using drugs, wanted to work, personal guilt,

 

 
 

 

 

— DROPOUT AND RETENTION ; DROPOUTIRETENTION
CURVES FOR EACH OF THE eaconams ACROSS 10 MONTHS
100 7 ICA PROGRAMS —2 . Wea ec liom
ot rae + = (n97e oéeees) “a
90 Orseeee e _ :
o=——-2 0§ . : . . .,
erccese OF
80
70
60
= so
‘$
@® 40
30

20

a |

 

 

 

b 2 enneseeoe®

[

—

 

 

I> S- 20- 61- 91- ta ISI iBl- an- gar 271 300 t-  IS- 30- 61 9I- 121- ISI- 1el- 2N- 241- 271-
4 29 60 90 120 150 180 20 240 270 300 aEManie 4 29 60 90 120,150 180 210 240 270 300
DAYS IN TREATMENT DAYS IN TREATMENT |

Fig. 2. The Pattern of dropout in seven traditional therapeutic community Programs fm the North Americana organization, Therapeutic Communities
of America (TCA), . os .

 

 

 
 

 

THE THERAPEUTIC COMMUNITY ~ 831

TCA CONSORTIUM
LIKELIHOOD OF DROPOUT
90 OR RETENTION

Staying
70

60
50
40

PERCENT

30
20
j 0

0

 

 

14 * 90 180 270 365
DAYS IN TREATMENT

Fig, 3. Likelihood of retention based upon 3-month survivor rates. Over 70% of admissions
stay 14 days. Of these, half remain 90 days, and of the latter. 62% continue to 180
days. About 68% of the 6month survivors continue an additional 3 months, and 73%
of the 9-month survivors stay through 12 months. -

fear of failure). Of particular importance, however, is that the distribution of
program versus personal reasons differed by length of stay, with significantly
fewer personal reasons associated with retention over 12 months in treatment
(De Leon, 1984c).

Studies involving other therapeutic communities highlight the importance
of the client’s perception of self, the environment, and ciscumstance in relation
to dropout. Investigations using the Community-Onented Programs Environ-
mental Scale (COPES) have shown that client perceptions of the TC environ-
ment differ by time in program (De Leon et al., 1980).

Of particular relevance are findings and conclusions from a large-scale earlier
investigation of two therapeutic communities completed by a Rutgers team of
investigators (Washburn, 1979). Clients who entered treatment under legal or
family pressure remained longer only if they perceived those pressures as nega-
tive (Condell, 1983), and conclusions from ethnographic analyses asserted that
longer-staying dropouts appeared more dysfunctional than shorter-staying
dropouts.

 

 
 

 

832 DE LEON
Treatment Process

-. “Treatment: process has been the least investigated problem in drug abuse
treatment research. Ironically, the first process studies in TCs appeared more
than a decade ago, but their importance receded in favor of the need to esta-
blish firm information concerning treatment effectiveness.

. The relatively few process studies in the ‘literature may be classified into
, three categories: studies of treatment change, direct investigations of treatment.
elements, and client ‘attribution of treatment influences: The main findings from:
each are briefly summarized. . a
. ‘ Treatment change studies have examined clients’ psychological change
during their stay in programs without assessment of treatment components.
They are reviewed as process studies since many of the psychological scores
measured change reflecting program goals, for example, attitudes, ego strength,
emotional control, responsibility, self-esteem, etc. Together with behavioral
changes in drug use and antisocial behavior, psychological change during resi-
dency strengthens inferences concerning the specific influences of treatment ele-
ments.

The studies employed standardized psychological inventories but vary with
respect to design, number of variables measured, and the number of observa:
tions during treatment (e.g., Brook and Whitehead, 1980; De Leon, 1974, 1976,
1980a; De Leon et al., 1971, 1973; Kennard and Wilson, 1979; Sacks and Levy,
1979; Zuckerman et al., 1975).

Results are quite uniform in showing: (1) The profiles or patterns of psych-
ological scores are similar across programs and even cultures. For example, pro-
minent are the signs of character disorder, personality inadequacy, mood dis.
Order, poor self-esteem, and dull-normal intellectual level. (2) Overall psycho-
logical status improves significantly during treatment across most measures
but generally does not attain normative or healthy levels. Larger improvements
occur in self-esteem, ego strength, socialization, and depression. Relatively small |
changes occur in the more enduring personality features, for example, the char-
acter disorder elements. Thus, drug abusers in the TC are psychologically similar

- and show significant improvement in most psychological domains, although
’ long-standing character traits are more resistant to change. (3) Psychological
improvement posttreatment generally exceeds the gains made during treatment,
_ although one study obtained no further gains at 4-year follow-up beyond those |
" obtained in the first ‘posttreatment year (Brook and Whitehead, 1980).

oS Studies completed at Phoenix House specifically correlated global indices of
drug use and crime (success status) with psychological improvement during treat-
ment and at follow-up. Clients with an unfavorable success index at follow-up
showed little psychological change during treatment or at follow-up. In contrast,
clients who obtained a favorable success index had revealed significant psycholo-

\

 

 
 

 

THE THERAPEUTIC COMMUNITY 833

gical improvement during treatment and continued psychological gains at fol-
low-up. This important finding offers indirect, but positive, evidence for the
influence of treatment factors in the change process.

Some studies have addressed the relationship between specific treatment
elements and client change during residential treatment. For example, results
show significant reductions in self-rated emotionality (depression, hostility,
anxiety) and in physiological “upset” (systolic blood pressure) immediately
following participation in encounter therapy sessions when compared with base-
line measures (Biase and De Leon, 1969; De Leon and Biase, 1975).

Research in progress at Daytop Village therapeutic community has experi-
mentally evaluated the effects of a specific educational intervention (college
credit courses) upon clients in a therapeutic community during the primary
treatment stage of their residency. Significant longitudinal changes in self-
concept occurred for both groups, but gains were larger in the college clients.
These findings support the TC assumptions concerning process and role changes.
The student role significantly enhanced self-esteem over that expected from
treatment effects alone in the TC (Biase, 1981).

Treatment process has also been indirectly examined with the COPES scales
in several studies which measured change in client perception of the therapeutic
community environmental elements. Although preliminary, this research has
provided considerable data from several programs, the main results of which are
stable and orderly. First, all TC programs revealed COPES profiles which dif-
fered from prisons and hospitals. Second, client perceptions of the environment
related to time in program and were consistent with expectation concerning
the treatment process associated with length of stay (Bell, 1983; De Leon et al.,
1980). Thus, the assumption that common philosophy and practices underly the
traditional TCs is not contradicted by the staff and residents’ perceptual data
provided in the studies.

Attribution studies have investigated client perceptions of their experiences
in TCs. Generally, on measures of satisfaction, clients report a favorable experi-
ence in the therapeutic community and could recommend their particular resi-
dential program to others (e.g., De Leon, 1984c: Simpson and Lloyd, 1979;
Winick, 1980). Unpublished studies have reported a positive association between
time in program and client attribution of insight, participation in group encoun-
ters (Browne, 1980), and adjustment during treatment (Washburn, 1979).

A large-scale investigation assessed the relationship between clients’ post-
treatment status and their perceptions of the treatment experience (De Leon,
1984c; Wexler and De Leon, 1983). Successful follow-up status and length of
stay in treatment were directly related to client ratings of their satisfaction with
treatment, the relevance of specific program components to their status, and
their weighting of the relative importance of treatment and nontreatment in-
fluences upon their life-styles since leaving treatment. Although clear, these

\

— ‘

 

 

 
 

 

833 ‘DE LEON

findings must be cautiously interpreted given their retrospective nature. Possi-
dle halo'effects, Gr dissonance factors, might have influenced client perceptions _
of treatment experience and their own follow-up status. Nevertheless, the re-
sults firmly support hypotheses concerning the relationship between treatment
experience, treatment elements, and outcome status.

Summary on Research and Evaluation
There are several conclusions from the review of the literature. First, among
_ Clients who enter therapeutic communities, successful outcome is directly re-
‘lated to retention ‘in treatment. Studies reveal few consistent or large predictors
of successful outcome other than length of stay. However, many admissions to
therapeutic communities leave treatment before beneficial effects are presumed
to be rendered. Second, relatively little is understood about who drops out or
remains in TCs. Typical client profiles in relation to retention have not been
delineated. While some variables have consistently correlated with length of stay,
the predictive power of these has not been large or corroborated in replication
designs. Third, investigations have examined retention rates as well as other
temporal characteristics of dropouts: These yield findings which indicate that
attrition is the rule across TCs (and other modalities), and that the temporal pat-
tern of dropout is predictable. Fourth, little is known as to the reasons for drop-
out. However, studies point to the importance of client perceptions of the treat-
ment environment and of their problems in influencing retention. Finally, there is
relatively little research on treatment process in TCs. The findings from these
studies support inferences concemimg the process of change, although the pro-
cess itself remains to be investigated.

SOME IMPLICATIONS FOR RESEARCH

The conclusions from TC research contain certain issues or implications for
future research and treatment. These are discussed in relation to the three main
. areas of inquiry. 7

Treatment outcome studies indicate that TCs are effective when evaluated
in terms of their principal arm of modifying both social and psychological adjust-
ment. Nevertheless, this conclusion remains tentative in light of familiar metho-

_ dological considerations, the most serious of which is the lack of control groups.
. The follow-up samples studied may be self-selected to seek, remain in, and bene-
fit from the TC; or perhaps to improve without any treatment. Thus far, how-
ever, solutions to these selection problems have eluded research strategies. As-
sembling matched controls or comparative treatment groups through random
assignment has not been feasible. There are ethical problems in withholding
treatment; and random assignment to modalities, even those selected by clients

 
 

SAA
\
\

THE THERAPEUTIC COMMUNITY 835

themselves, requires huge samples to absorb attrition rates arising from client-
treatment mismatch. \

These practical and conceptual difficulties stress the need for a revised
perspective on the interpretation of treatment outcome research which would
reflect the multivariate complexity of individual change. One such perspective
has been outlined for therapeutic communities in other writings (De Leon,
1980b, 1984b; De Leon et al., 1982). Briefly, successful outcome emerges from
an interaction of client, treatment, and nontreatment influences. The specific
impact of the treatment experience is most apparent during and immediately
following residency; thereafter, though less recognizable, treatment effects may
integrate with (or perhaps alter) the contribution of other experiences in main-
taining successful status.

This perspective emphasizes several assumptions that are also relevant for
the design of outcome studies. First, drug abusers can be classified according to
differences actually observed in relation to their treatment involvement. This
suggests that the universe of drug abusers can be quadrasected, by definition:
those who come to treatment and those who do not, and within each of these
groups, those who make positive changes and those who do not. The natural
history or treatment outcome for each group reflects its unique composition.
For example, those “untreated” drug abusers who mature out of their addiction
lifestyle are simply different people from those who enter treatment and
change. This assumption then, avoids the dead-end criticism of the no-treatment
control, since the four groups do not serve as controls for each other.,

Treatment effectiveness should be assessed for those clients. who seek
reatment or perhaps those who remain in treatment settings. Comparisons in-

[ving the clients in the other quadrants, however, coula reveal much about
dividual differences and the many influences that contribute to the change
process. cy
Second, that client change reflects an interaction between the individual and
eatment, implies mutual, bidirectional influences between the person and
the treatment environment. Thus, treatment influences, as unique measurable
events, are not readily extractable. Furthermore, the global treatment experi-
ence itself is an episode, one of many experiences in the individual's continually

' changing status. Thus, “proving” a treatment influence is less relevant than

identifying its particular contribution to a continuing process of individual
change. '

Third, the primary source of information about this process is the client's
own view of\the relevant influences. External corroboration of client change
\through records or other testimony validates the fac? of change but does not
reveal the reeson fo change. In the last analysis, it is the client who weights the
relevant influences in his or her life. ’ \

yy AY
Pe!

\
\ \
. \

 

 
 

 

836 - DELEO

. Dropout is a persistent but perhaps the least understood problem in sut
‘stance abuse ‘treatment. For therapeutic communities in particular, the impo!
‘“tance-of retention is illustrated.in the fact that research has established a firn
relationship between’ retention ‘and outcome. However, most admissions t
therapeutic.community programs leave residency, many before treatment. in
‘fluences are presumed to be effectively rendered. Thus, the TC's impact i& per
_Ceived as limited relative to other treatment modalities. hs
_ + Within the context of the research reviewed, a perspective on retention car
‘be ‘drawn which ‘guides the, interpretations of dropout .and hypotheses fo:
"further research. First, thé drug users who seek treatment, particularly to one
Modality, are more ‘similar than different. Thus, measures of their social and
psychological characteristics show relatively low variability and, hence, litde
power to predict success or retention.

Nevertheless, those who seek treatment could be diverse in ways that have
not yet been fully explored. These presumed differences reflect not who clients
are, in terms of fixed background characteristics, but how they perceive them-
selves, their circumstances, and their life options at the time of treatment
contact. :

Assessment of these differences would focus upon at least four domains of
client perception variables which alone or in combination affect dropout. —

1. Motivation (intrinsic pressures): This refers to the severity of the problem
(felt dissatisfaction, fear, pain) and the need for personal change.

2. Circumstance (extrinsic pressures): This refers to external influences.to seek
and remain in treatment exerted by family, personal relationships, health
and legal conditions, employment, educational, and fiscal matters.

3. Readiness: This refers to the perceived need among motivated individuals to
elect or accept a treatment approach to assist in personal change compared
with alternative options such as self-change or other offerings.

4. Suitability: This refers to the client's appropriateness, understanding, and
acceptance of particular treatment approaches, |. ae .

The specific variables within each domain remain to be elaborated and their
. Felevance to retention must be empirically investigated.
_ Second, the pattern of retention is lawful and quantitatively predictable,
" but the phenomenon itself remains to be explained. Not unlike the perspective
". ON,Outcome, retention can be viewed as a complex interaction of client diversity -
and treatment influences. Shifts in the relative contribution of each are perhaps
reflected in the different segments of the retention curve. Within this interac-
' tional’context, a constant proportion of dropout is expected when homogeneous
procedures (treatment) are imposed upon a diversity of clients.

 

 
 

 

THE THERAPEUTIC COMMUNITY 837

The importance of treatment process studies is evident to most investiga-
tors. To a large extent, the conclusions concerning treatment retention and
effectiveness highlight the need to clarify treatment process. Although impres-
sive. the relationship between length of stay and treatment outcome only in-
directly infers the influence of treatment elements upon client status. Thus,
process studies can render explicit the correlation between actual events in
treatment and change in client status. It is this interplay between treatment
elements and client change which defines process.

Much has been learned from TC research as to the implementation of stu-
dies in treatment settings. (See, ¢.g., De Leon, 1979.) The main lesson from
these efforts is that treatment process is perhaps the one investigative area which
is uniquely suitable for program-based research teams. This is evident in several
ways.

Process studies require the complete involvement of clinical, administrative,
and research staff from the initial phases of describing the critical treatment
elements to later stages of monitoring their efficacy. Program-based research is
more easily integrated with the clinical staff and is more intimate with the
treatment process itself.

Treatment process research imposes strains upon program activities, and
hence it is understandably resisted by program staff unless they can see its
benefits. The utilization of treatment process research information by programs
is more likely with program-based research teams who serve in educative roles.

IMPLICATIONS FOR TREATMENT

What we have learned from research, practice, and observations of the
changing drug patterns contains implications for clinical practice and the TC
model.

TC Alternatives and Client Diversity

Traditional TCs are highly effective for a certain segment of the drug abuse
population. However, those who seek assistance in TC settings represent a broad
spectrum of clients, most of whom may not be suitable for long-term residential
stay, as is evident in the high early dropout rates. These facts are of particular
importance since considerable evidence documents the trend in drug misuse and
abuse in an ever-widening diversity of individuals.

Research has not precisely identified the client who ts most appropriate for
long-term residential treatment. As shown earlier, there are relatively few fixed
client characteristics which predict either retention or successful outcome in any
treatment modality. Nevertheless, research data agree with clinical observations

 

 
 

 

838 DE LEO?

‘that important differences among individuals may lie in their motivation, readi
;. ness, and suitability for. treatment in TCs. . -, 7 cet

ws The fssues of, retention and’ client diversity underscore the necessity for
TCs to'develop alternatives to long-term residence and skilled diagnostic-assess
. ment capability. These, however, appear to counter the traditional TC's open:
, door policy for.admissions. Nevertheless, wise assessment of individual differ-
, ences can only enhance the therapeutic community’s capability of retaining
those suitable for residential treatment and offering appropriate options for the
; considerable number of others who do not enter or stay in long-term residence.
"Some TCs have ‘developed diagnostic capability, although ‘explicit criteria ard
reliable instruments for evaluating client differences remain to be developed.
-+ CAS previously suggested, TCs can offer service alternatives other than long-
“ term residence or referral to other modalities. In this regard, the philosophy and
approach of the therapeutic community can be modified for both outpatient
and short-term residential models. There is an underlying concern, however,
that such modifications could dilute the unique strength of the TC approach
itself. Can the traditional TC engineer its social and psychological effects with-
out the 24-hour influence of the residential setting? Or, can a TC maintain the
integrity of its community dynamic under a short-term residential regime?
These questions remain to be empirically answered. However, the issue of
individual differences for the TC need not be one of changing itself; rather, it
may adapt what it knows and does for the changing client. The task, then, is to
develop new ways of delivering the basic TC message. It is not whether long-
term residential treatment is appropriate for all clients; it is clearly not. For
TCs, the question is what new tactics and strategies are needed to produce the
TC’s unique therapeutic impact upon the broad spectrum of clients in and out
of residence.

The TC, Mental Health, and Substance Abuse

___ For a variety of reasons, the drug abuse client in treatment has not attracted
the respect, interest, or involvement of the mental health establishment. Never-
theless, the pressure has mounted on mental health institutions to identify and
treat a growing substance abuse problem among psychiatric patient populations.
This has increased their receptivity to TC models, albeit in modified formats.

Extensive use of substances by inpatient psychiatne patients is commonly
‘reported by staff and is currently being documented. In particular, among young
adults in mental hospitals (young adult chronics)—who constitute a substantial
proportion of the inpatient population, ages 18-35—drug use poses serious ma-|
Nagement and clinical problems. Although the cause-and-effect questions remain
unresolved, there is little doubt that the availability and use of substances pro-
duces symptoms or exacerbates preexisting psychuatric conditions.

 

 

 
 

 

THE THERAPEUTIC COMMUNITY

Evidence also suggests that there is considerable substance use among
population of outpatient ambulatory clients. Undetected drug use in this gri
and its contribution to the clinical picture of the individual's adjustment pres
a formidable diagnostic problem. This has lately given rise to the need for a d
diagnosis category (e.g., psychiatric plus substance abuse) in assessing clients
outpatient settings.

The involvement of the mental health system in substance use represer
both threat to and opportunity for therapeutic communities. North Americ:
TCs have been wary of the mental health system for several reasons (see, ¢.£
De Leon and Beschner, 1977). For example, the mental health system is pol
tically, fiscally, and scientifically more well entrenched than the recently asserr
bled drug treatment and research system. Many scientists, health care profes
sionals, legislators, and policy makers view drug mususe as a variant of menta
health problems. Mental health professionals still tend to explain the drug abuse
problem in psychological-psychiatric jargon, as do medical specialists in a biolo-
gical vernacular. Similarly, they tend to ignore the advances accomplished by the
main treatment modalities developed specifically for drug abuse. The unique
approach to treating drug abuse problems in TCs is often retranslated into men-
tal health concepts which can obscure its special character. This is particularly
evident among the TCs within certain psychiatric settings, inpatient alcohol
and short-term VA programs. ;

Moreover, increasing numbers of mental health practioners are involved in
the substance abuse problem. These professionals have the social tnefit of
status and authority. Thus, their role in substance ab... could giu _ super:
cede those of the paraprofessionals, most “* whom have been mn ered ex-
addicts and who have been most effer*.¢ in treating substance abuse problems.

These threats also present < certain opporunity for the TC to consolidate
its position and further >. vive as a health care institution. TCs have developed a
powerful approach <o successfully treating many drug abusers. To prevent the
dilution of th. model, the TC is currently attempting to codify its principles '
and orzcuces. This explicit rendering of TC theory, practice, and training could
exert a positive influence on the mental health system itself. Rather than co-
Option, there is the real possibility that the traditional human service establish-
ment can be positively influenced by the TC.

Similarly, outpatient counseling centers serving larger numbers of families
and adolescents with substance abuse problems have much to learn from the TC
approach. Some TCs have developed outpatient modalities which appear to be
successfully treating substance abusers based upon TC principles.

Finally, the current trends portend the development of a new TC model
incorporating elements of the traditional TC approach, appropriate psychiatric
techniques, and established practices developed in the Jones therapeutic com-
munity model. Several writers have proposed a common TC model which could

 

 
 

 

&40

‘serve varieties of psychiatric and/or substance abuse clients (e.;
_1983b; Jones, 1980; Sugarman, 1981)...

. A broader issue concemis the larger social community. ‘The TC
individual change is fundamentally consistent with good parentii
‘management. However, acculturation of recreational drug use ha
sanctioned substance use, particularly among adolescents. In the pr
‘climate of pervasive drug use, traditional TCs can play a unique rol
provider and educator, From the.TC perspective, abstinence or moc
-‘veals self-control and an increased capacity .to tolerate the frustratio:
in social and interpersonal pressures without recourse to quick relief
This. perspective can be translated to the larger community through dr
‘tion ‘and’ early intervention efforts which reinforce values and conduc
spect to drug use.

This role function is depicted in two illustrations. Some TCs ha'
resource for developing parent organizations against youth drug use it
and the United States. The basic family surrogate approach in TCs resoi
attitudes and values of these groups.

Also, drug education and drug prevention projects have long bee:
way in several traditional TCs in North America. These, however, have
been empirically evaluated. "

“Beware of Constantine”

The rate of evolutionary change in therapeutic communities toward
tablished human services institution has been notably rapid. This is partic
evident in a review of change since January 1976, when the first assembly :
programs convened in Washington, DC (see De Leon and Beschner, 1
Several of the main agenda items of that milestone meeting are now signif
accomplishments.

First, the national organization Therapeutic Communities of Amt
(TCA), consisting of over 100 full and corresponding member therapeutic c
munities, has firmly established its visibility and credibility as the voice of
_ drug-free treatment approach and philosophy in the United States. In a }

" short years, this organization has demonstrated effectiveness in influencing fu:
-‘ing priorities, disseminating infonnation throughout the field, and strength
+ ing the.cohesiveness of the therapeutic cammunity madality.. - .

: On a similar but larger 4qJe—there has emerged the World Federation
" Therapeutic Communities (WFTC), which represents programs from all cont
nents and many nations. This organization has sponsored. nine world confe
. ences and published five books of proceedings. It symbolizes the elaboration o
" the therapeutic community approach into a human services movement, eviden

 

 

 
 

 

THE THERAPEUTIC COMMUNITY 841

in the rising number of regional therapeutic community organizations through-
out the world.

Second, upgrading the skills and practices of therapeutic community wor-
kers has been advanced through an explicit credentialling process. The North
American organization (TCA) has established criteria and procedures for evalu-
ating counselors and certifying their competency. This critical step paves the
way toward strengthening the professionalization of addiction specialists.

Third, management, fiscal, administrative, and research sophistication are
now apparent in the therapeutic community modality. Most larger and older
programs incorporate the hardware and software of modern corporate organiza-
tions to facilitate operations, and they seek continued management education
training. Some have developed program-based research and evaluation capability;
others are participants in scientific efforts. Old issues of anti-intellectual bias
have receded, as is evident in the steady recruitment of workers from all special-
ties to provide ancillary services and to strengthen administrative operations.

These advances have been made in spite of the fact that a certain anxiety
that pervaded the 1976 conferees lingers today. Then, fiscal survival compelled
TCs to ambivalently accept institutionalization, which for many portended a loss
of identity. Now, ironically, the TC's status as an established health care institu-
tion has mitigated its survival fears but not the possibility of oblivon through
mutation.

Can the TC alternative, supported and nurtured by the establishment,
thrive in its original form, which presumably is the basis of its success? Current-
ly, that question cannot be clearly answered.

The uniqueness and strength of the TC lay in its fundamental elements of
self-help and community as healer. [ts onginal form and, perhaps, its fate re-
semble those of its historical prototypes. These quasi-religious groupings spon-
taneously arose among the disaffiliated as responses to societies which failed to
help, and they disappeared, usually through dilution or assimilation.

Unlike its prototype, however, the 20th century TC is a hypnd spawned
from a union of public support and self-help. Thus. bureaucracy, accountability,
and professionalization (and the increased distance from its first generation
roots) are factors which could radically change the self-help character of the TC.
These institutional attributes. which assure its survival, could pollute its human-
istic ecology and devitalize its community dynamic.

Nevertheless, this phase of the TC experiment may yet prove to be the most
exciting. Its essential “curative” elements—community, self-help, individual
commitment, role modeling, and social learning—may be transmittable forces
mediated more through the attitude, conduct, values, and vision of the people
involved in the process than through its institutional framework. Thus, the TC
can remain immune from the potentially dehumanizing influences of technol-

 

 
 

 

842 DE LE:

ony, professionalization, management, and bureaucracy by utilizing the adv;
_, tages. of, these in the service of its ‘purpose, the positive transformation

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THE THERAPEUTIC COMMUNITY 843

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Note: Figs. 2 & 3 (See De Leon & Schwartz, 1984)

 

 
 

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PRESIDENTIA MMISSILON ON TH
HUMAN I[MMUNOD Y VIRU

DECEMBER 18, 1987

TESTIMONY:

SHiRLEY D. CoLetri
Executive DIRECTOR
OPERATION PAR, Inc.
6613 49TH Street NORTH
PINELLAS Park, FroriDA 34665

 

 

 
 

PAGE 1

PRESIDENTIAL COMMISSTON ON THE
HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
TESTIMONY - JV DRUG ABUSE AND THE HIV EPIDEMIC
SHIRLEY D. COLETTI

OPERATION PAR, INC.
DECEMBER 18, 1987

OPERATION PAR IS A COMPREHENSIVE SUBSTANCE ABUSE PREVENTION, EDUCATION,
AND TREATMENT ORGANIZATION. PAR HAS PROVIDED SERVICES TO THE IV DRUG
ABUSING POPULATION SINCE 1969. SERVICES PROVIDED TO THIS POPULATION
RANGE FROM METHADONE MAINTENANCE, DETOXIFICATION, RESIDENTIAL TREAT-
MENT, AS WELL AS QUTPATIENT COUNSELING. CURRENTLY, PAR PROVIDES
METHADONE MAINTENANCE FOR 177 PATIENTS. RESIDENTIAL AND DETOXIFICATION

SERVICES ACCOUNT FOR AN ADDITIONAL 100 PATIENTS.

RECENT AIDS RESEARCH INDICATES THAT ONE OF THE MOST ACTIVE TRANSMITTERS
OF THE AIDS VIRUS ARE IV DRUG ABUSERS. ESTIMATES FROM DRUG ABUSE
PROGRAMS FROM AROUND THE COUNTRY ARE REPORTING HIV POSITIVE RESULTS

ON SIGNIFICANT PERCENTAGES OF THEIR CLIENTS. THE NEW YORK STATISTICS
THAT INDICATE 75% OF ALL IV DRUG USERS HAVE TESTED POSITIVE, IS

ESPECIALLY ALARMING.

 

 
 

PAGE 2

SHIRLEY D. Covetry
QPERATION PAR, Inc
DecemBer 18, 1987

DUE TO A LACK OF FUNDING, OPERATION PAR WAS NOT ABLE TO INITIATE HIV
TESTING UNTIL AUGUST OF 1987. NEW ADMISSIONS TO PAR’S METHADONE
PROGRAM ARE CURRENTLY ROUTINELY BEING TESTED. ALTHOUGH THE RESULTS

OF SUCH TESTING IS PRELIMINARY, IT PROVIDES IMPLICATIONS FOR TREATMENT.

BASED UPON 40 TESTS CONDUCTED FROM AUGUST TO OCTOBER OF 1987 ON
“HIGH RISK” PATIENTS ADMITTED TO PAR’S METHADONE CLINIC, A TOTAL OF

4 POSITIVE HIV TEST RESULTS (10%) -HAVE BEEN FOUND.

MORE EXTENSIVE HIV TESTING HAS BEEN CONDUCTED BY THE PINELLAS COUNTY
HEALTH DEPARTMENT. ACCORDING TO THIS TESTING, A TOTAL OF 170 POSITIVE
HIV TEST RESULTS HAVE BEEN OBTAINED FROM 2,335 TESTS CONDUCTED. THIS
REPRESENTS AN OVERALL RATE OF 11.6% POSITIVES FOR ALL HIV TESTS CON-

DUCTED.

ALTHOUGH THE PERCENTAGE OF POSITIVE RESULTS REPORTED ARE CONSIDERABLY
LOWER THAN THOSE ACKNOWLEDGED BY MAJOR METROPOLITAN AREAS, WE FEEL

STRONGLY THAT WE ARE MEASURING THE TIP OF THE ICEBERG.

 

 
 

 

PAGE 3 |
SHrecey D- Covettr

Decenser 18, 198)"
THE TRUTH IS THAT THROUGHOUT THE COUNTRY THERE ARE HUNDREDS OF COMMUNITY
BASED DRUG PROGRAMS FACING A PROBLEM IN RELATION TO AIDS. THOSE IN
THE FIELD OF DRUG ABUSE TREATMENT ACKNOWLEDGE THAT A SMALL PERCENTAGE
OF THE HIGH RISK POPULATION OF DRUG ABUSERS ARE CURRENTLY INVOLVED IN
TREATMENT. THE PERCENTAGES REPORTED ARE ONLY THOSE USERS WHO HAVE
COME INTO TREATMENT. COMPOUNDING THE DIFFICULTY IN ACCURATELY
ASSESSING THE POTENTIAL RISK EVIDENT TO IV DRUG USERS IS THE
DYNAMIC OF THE ADDICT. ADDICTS ARE SICK. THE DISEASE OF ADDICTION
AND THE NEED FOR THE DRUG, OVERIDE ANY LOGICAL CONCERN FOR THEIR

SAFETY OR THE SAFETY OF OTHERS. THEY WILL CONTINUE TO USE UNLESS

TREATED, AND WHILE THEY USE, THEY WILL SPREAD AIDS.

WHAT CAN BE DONE?

FOR YEARS, DRUG ABUSE PROFESSIONALS HAVE PLEADED WITH LOCAL, STATE,
AND FEDERAL AUTHORITIES TO PROVIDE TREATMENT PROGRAMS ADEQUATE 10
MEET THE NEED. AT OPERATION PAR, WE MAINTAIN A WAITING LIST OF

OVER 250 PEOPLE FOR RESIDENTIAL TREATMENT ALONE. THESE PEOPLE CAN'T

WAIT. UNLESS ADMITTED INTO TREATMENT, THEY WILL CONTINUE TO ABUSE

 
 

 

PAGE 4

SHIRLEY D. Covet
QPERATION PAR, Inc.
DeEcemBerR 18, 1987 .

DRUGS AND REMAIN A HIGH RISK FOR SPREADING THE HIV VIRUS TO THE

HETEROSEXUAL COMMUNITY.

FROM THE VANTAGE POINT OF A COMMUNITY BASED DRUG TREATMENT PROGRAM,
THERE APPEARS TO BE FOUR STRATEGIES WE CAN ENGAGE IN TO HELP CONTAIN

THE RISING EPIDEMIC:

#]_ - EDUCATION:

PROGRAMS AND MATERIALS MUST BE DEVELOPED TO ADDRESS THE SPECIAL
EDUCATIONAL NEEDS OF THE ADDICT. SUPPORT NETWORKS LIKE AA, AND

NA NEED TO TAKE AN ACTIVE ROLE IN PREVENTION EDUCATION. SPECIAL
ATTENTION MUST BE FOCUSED ON MINORITY EDUCATION REGARDING THE LINK
BETWEEN AIDS AND IV DRUG USE. CURRENTLY THERE IS A DISPROPORTIONATE

RATE OF INFECTION AMONG CERTAIN POPULATION GROUPS.

PREVENTION EDUCATION EFFORTS MUST BE DEVELOPED AND IMPLEMENTED IN

COOPERATION WITH HEALTH OFFICIALS AND DRUG ABUSE PROFESSIONALS.

#2 - EXPAND LOCAL TREATMENT CAPACITY:

WAITING LISTS FOR DRUG ABUSE TREATMENT ARE A BREEDING GROUND OF

 

 

 
 

PAGE 5

SHIRLEY D- Covtetti
OPERATION PAR, Inc.
DecemBper 18, 1987

SOCTAL PROBLEMS. CRIME RATES, SOCIAL PROBLEMS AND AIDS ALL TEND TO
MULTIPLY WHEN WAITING LISTS FOR TREATMENT ARE LONG. AT PAR, THE

WAITING LIST FOR ADULT (OVER AGE 18) RESIDENTIAL TREATMENT HAS BEEN
FROZEN AT 270 SINCE MARCH OF 1987. ON AVERAGE, THE “WAIT” IS 6 T0

8 MONTHS PER CLIENT FOR A TREATMENT BED.

ADDITIONAL TREATMENT CAPACITY WOULD ENABLE COMMUNITIES TO ADDRESS

THE ADDICTION NEEDS OF THESE PEOPLE WHILE HELPING TO CONTAIN THE
AIDS EPIDEMIC BY PROVIDING A STRUCTURED ENVIRONMENT AND TREATMENT

FOR THE CLIENT. WE ALSO NEED TO REALIZE THAT EDUCATION ON THE RISK
OF AIDS FOR IV DRUG USERS WILL NOT BE EXTREMELY SUCCESSFUL FOR THE
"ACTIVE ADDICT”. THESE PEOPLE ARE HOPELESSLY CAUGHT IN THE CYCLE

OF ADDICTION. PROVISION OF TREATMENT WILL DEAL WITH THIS ADDICTION ©

AND CONTAIN THEIR HIGH RISK BEHAVIORS.

#3 - INTERAGENCY COOPERATION:
MANY DIFFERENT GROUPS ARE ADDRESSING THE AIDS EPIDEMIC. LOCAL, STATE
AND FEDERAL PROGRAMS MUST BEGIN TO WORK TOGETHER TO, DEVELOP SUCCESSFUL

PREVENTION, CONTAINMENT AND TREATMENT STRATEGIES.  INTERDISCIPLINARY

 

 
 

PAGE 6
SHIRLEY D-. Covet}

December 18.4987"
WORK GROUPS MUST BE ESTABLISHED. THESE GROUPS MUST INCLUDE PUBLIC
HEALTH, MEDICAL, DRUG ABUSE, SOCIAL SERVICE, THE MEDIA, EDUCATION
AND GOVERNMENT PROFESSIONALS. THESE GROUPS SHOULD SHARE INFORMATION
ON HIGH RISK GROUPS, DEVELOP STRATEGIES FOR PREVENTION/EDUCATION

AND TREATMENT AND MOST IMPORTANTLY, MUST MONITOR THEIR SUCCESSES

AND FAILURES AND SHARE INFORMATION WITH OTHER GROUPS.

#4 - CONTAINMENT PROGRAM

IN RECENT MONTHS WE HAVE COME TO THE REALIZATION THAT WE ARE AT

THE HEADWATERS OF AN EPIDEMIC THAT COULD DEVASTATE OUR NATION’S
POPULATION. UNFORTUNATELY, WE ALSO HAVE BEEN MADE AWARE THAT A
PERCENTAGE OF THE PEOPLE INFECTED WITH THE HIV VIRUS CONTINUE TO

ACT IN A RECKLESS NANNER EVEN AFTER NOTIFICATION IS RECEIVED OF
THEIR INFECTIOUS STATUS. ADDICTS WHO ARE “USING” ARE IMPAIRED.

THEY ARE NOT ACTING RESPONSIBLY. THEY ARE IN A POSITION TO ENDANGER

THE HEALTH OF HUNDREDS OF PEOPLE.

THERE APPEARS TO BE GROWING SUPPORT FOR THE DEVELOPMENT OF A CON-

TAINMENT POLICY FOR NON-COMPLIANT CARRIERS. SUGGESTIONS INCLUDE

 

 

 
 

 

PAGE 7

SHrracey D- Cotetti
OperaTION PAR, INc
Decemper 18, 1987

PROGRESSIVE SANCTIONS THAT OFTEN BEGIN WITH A WARNING AND RESULT
FINALLY IN PHYSICAL RESTRICTION. NON-COMPLIANT CARRIERS MUST BE

ADDRESSED AS DANGERS TO THE PUBLIC HEALTH.

ANOTHER ISSUE RELATED TO CONTAINMENT DEALS DIRECTLY WITH GEOGRAPHY.
THE HIGH RISK GROUPS OF IV DRUG USERS CAN BE DESCRIBED AS SOMEWHAT
TRANSIENT. THIS GROUP TENDS TO DRIFT WITH THE SUPPLY OF THE DRUG
OR WHERE PROGRAMS (LIKE METHADONE CLINICS) WILL ACCEPT CLIENTS.

AS I STATED PREVIOUSLY, NEW ADMISSIONS TO PAR’S METHADONE CLINIC
ARE RUNNING A 11% POSITIVE RATE. ‘FIGURES SUPPLIED BY PROGRAMS FROM
OTHER METROPOLITAN AREAS, LIKE NEW YORK, ARE CONSIDERABLY HIGHER.
OPERATION PAR HAS ALWAYS MAINTAINED AN OPEN DOOR POLICY FOR INTER-
STATE TRANSFERS FOR METHADONE TREATMENT. WE ARE CONCERNED ABOUT A

POTENTIAL CONFLICT WITH AN OPEN ADMISSION POLICY AND THE HEALTH OF

OUR COMMUNITY.

WE NEED TO TURN OUR ATTENTION TO DEVELOPING A NATIONAL POLICY TO
ADDRESS AIDS. THE POLICY MUST BE COMPREHENSIVE AND BALANCED. MEDICAL

RESEARCH MUST CONTINUE WHILE EQUAL AMOUNTS OF EFFORT, ATTENTION AND

 

 
 

PAGE 8

SHIRLEY D. Covert
OPERATION PAR, Inc.
DEcemBer 18, 1987

DOLLARS ARE SPENT ON EDUCATION, PREVENTION, TREATMENT AND CONTAINMENT.

\

AS A DIRECTOR OF A COMPREHENSIVE DRUG ABUSE PROGRAM, I AM CONFIDENT
THAT BY INCREASING OUR TREATMENT CAPACITY FOR IV DRUG ABUSERS, WE CAN
SEE SIGNIFICANT REDUCTIONS IN POSITIVE TESTING IN OUR COMMUNITY.
CURRENT RESEARCH INDICATES THAT CONSERVATIVELY ONE OUT OF EVERY

TEN AMERICANS BECOMES INVOLVED IN DRUG ABUSE. [V DRUG USERS ARE
CURRENTLY IDENTIFIED AS A MAJOR RISK GROUPS FOR AIDS TRANSMISSION.

WE NEED TO ADDRESS THE NEEDS OF THESE ADDICTS TO HELP REDUCE THE

RISK OF AIDS.

AS I WAS PREPARING FOR MY TESTIMONY DURING THIS HOLIDAY SEASON, I
WAS REMINDED OF A CHRISTMAS CAROL BY CHARLES DICKENS. EBENEZER SCROOGE

WAS VISITED BY THREE GHOSTS, THE PAST, THE PRESENT AND THE FUTURE.

IN A SENSE WE ARE MUCH LIKE EBENEZER SCROOGE. THE TESTIMONY You HAVE
RECEIVED DURING THESE HEARINGS REFOCUSED OUR ATTENTION ON THE
PAST, AND PRESENT. HOWEVER, WE HAVE A CHANCE TO AWAKEN LIKE THE

DICKENS’ CHARACTER AND CHANGE OUR FUTURE.
THANK YOU.

 
 

COMBINING ETHNOGRAPHIC & EPIDEMIOLOGIC METHODS
IN TARGETED AIDS INTERVENTIONS: THE CHICAGO MODEL

W. Wayne Wiebel, Ph.D.
Epidemiology & Biometry Program
School of Public Health
University of [Illinois at Chicago

Forthcoming chapter in National Institute on Drug Abuse Research
Monograph, Needle Sharing Among Intravenous Drug Abusers: National
& International] Perspectives. Based on presentation at NIDA
Technical Review Meeting, May 18, 1987, Bethesda Md.

’ +
}
e

 

 
 

Recent reports addressing the public health threat posed by
Acquired Immune Deficiency Syndrome (AIDS) have expressed a
disconcerting consensus in their interpretations of the epidemic's
severity and in their conclusions regarding the scope of responses
which are currently warranted. Projections from the Public Health
Service, the National Academy of Sciences, and the Surgeon General
in 1986 all highlight the catastrophic potential of the epidemic in
Progress and urge an unprecedented mobilization of resources to
check the spread of the virus.

Interventions - Until a large scale medical intervention becomes
available, prevention Campaigns promoting adherence to risk
reduction measures remain the Primary means available for
moderating the epidemic's impact. Such interventions have been
demonstrated to be effective in altering the sexual behavior of gay
males (McKusick et al. 1985: JAMA 1/10/86:171) and have contributed
to a decline in the rate of increase for new cases among gays in
New York and San Francisco (Amer. Med. News 1/24-30/86:1)}.
Although intervention efforts targeting the IV drug abuser risk
groups have lagged substantially behind those for gays (Marmor et
al. 1984), preliminary evidence from New York and San Francisco has
begun to suggest that this type of programming may also hold
promise for the IV drug using population (Friedman & Des Jarlais
1987; Amer. Med. News 1/16/87). Yet, unlike the gay community
which has assumed much of the responsibility for such initiatives
internally, IV drug abusers are widely recognized to present a more
difficult and challenging intervention target (Des Jarlais et al.
1985; NIDA Notes 1986; Wiebel 1986; Chaisson 1387).

Substance abuse is both directly and indirectly associated with the
AIDS epidemic. Direcitly, it is an established mode of transmission
through the sharing of hypodermic paraphernalia. Indirectly, it is
Suspected to accelerate the emergence of AIDS Symptoms among the
infected through the immunosuppressive effects of abused
substances, Further, the impaired judgement associated with
intoxication is believed to reduce adherence to risk reduction
measures (Ginzburg 1984, 1985: Friedland 1985; Cohen 1985).

.o>

 
 

 

urrently, IV drug users rank second to homosexual and bisexual
males in prevalence among AIDS cases. National statistics from the
Centers for Disease Control (CDC) through April of 1987 reveal IV
drug use to be a sole risk factor in 17% of AIDS cases, with an
additional 8% including IV drug use among multiple risk factors.
The rapidly escalating incidence of cases (Marmor et _ al, 1984; Des
Jarlais et al 1985; Friedland et_a} 1985) has led to an increased
recognition of the IV drug using population as representing a
"second wave" of the AIDS epidemic (Kotulak 1985). In addition to
their significance in ongoing patterns of epidemic progression, IV
drug users pose a further threat in the future course of the
epidemic as a potential vector of transmission to the general
population (Des Jarlais et al 1985; Ginzburg et al 1985: Redfield
et al 1985: Van de Perre et_a}l 1985; Winkelstein et al 1986;
Nichols 1986). Further, infected female IV drug users and the
female sexual partners of male IV drug users risk transmitting the
virus to their offspring.

To date, the vast majority of IV risk factor AIDS cases in this
country have come from the metropolitan region including New York
City and northern New Jersey (Cohen et al 1986; Selwyn 1986).
Their experience can offer insight into what may be expected in
other metropolitan areas if the epidemic is allowed to progress
unabated. For those areas fortunate enough to be at a relatively
early stage of epidemic progression, there is a “window of
opportunity" which offers the potential for influencing this second
wave of epidemic progression (Wiebel 1986).

Perhaps the most widely accepted strategy for containing the spread
of AIDS in the IV drug using population is to encourage addicts to
stop injecting drugs and to enter treatment (Marmor 1984; NIDA
Notes 1986; National Academy of Sciences 1986). Yet even under the
best of circumstances, only a minority of addicts can be expected
to voluntarily give up their use of drugs at any given time, and
much of the existing treatment system is already operating over
capacity.

A greater promise of intervention potential for this group is
suggested in San Francisco's experience with campaigns which began
in 1983, before AIDS cases in this risk group became a major

problem. Since early 1986, their Mid-City Consortium to Combat
AIDS has pursued one of the country's most aggressive interventions
to target active IV drug users (Feldman this volumn). Community

health outreach workers are assigned to establish a visible
presence in the, public areas commonly frequented by IV drug users.
Through personal contact, as well as the extensive distribution of
Literature, condoms, and bleach, substantial segments of the high
risk population are actively engaged in a campaign to prevent the

spread of AIDS. Individuals are provided with both basic AIDS
information and the prevention “tools" needed to accomplish risk
reduction (Amer. Med. News 1/16/87). Current statistics from this

region of the nation show, like New York, a decline in the rate of
increase for new cases among the gay and bisexual risk group but,
unlike New York, no dramatic increase in rate of cases from the IV
risk group (Newmeyer 1985; Amer. Med. News 1/86; Chaisson 1987).

 

 
 

 

hicago Community Outreach Intervention Mode] - Chicago's long
established tradition of innovative community-based programming
evolved, during the early 1970s, to include a new approach for
research and intervention in localized heroin epidemics (Hughes &
Crawford 1972; Hughes, Senay, & Parker 1972). Based on a
multi-method approach combining the basic principles of medical
epidemiology (deAlarcon & Rathod 1968; deAlarcon 1969) with
community ethnography (Lindesmith 1947; Becker 1953: Finestone
1957; Feldman 1968) as applied to the Study of substance abuse, the
model contributed to major advances in understanding and
intervening in community outbreaks of heroin addiction (for Summary
see: Hughes 1977). Subsequently, the model was extended in
application to address other types of drug abuse (Shick, Dorus, &
Hughes 1978; Shick & Wiebel 1981).

Key features of the Chicago model appear to be of direct relevance
in addressing this proposal's scope of work. First, the model
offers a systematic and efficient methodology for identifying and
accessing social networks of active IV drug users in the community

setting. Second, the model provides an integrated framework for
targeting interventions based on an analysis of the dynamic
patterns of epidemic progression. Third, the model includes

integrated procedures for needs assessment and service referral.
And finally, the model offers specific experience in encouraging
active drug users to enter treatment as well as in developing
procedures which facilitate this process.

Strategy within the context of the new epidemic, a proposal!
Submitted to the City of Chicago's Department of Health in
Summer of 1986. Funded later that Fall as a demonstration project
within the Centers for Disease Control's, Comprehensive AIDS
Prevention Education Program (CAPEP), the AIDS Community Outreach
Intervention Project has since begun to establish the data base
Which will be required to formally assess the model's efficacy as a
means of moderating further Spread of the HIV virus within targeted
populations. The remainder of this paper will address the Steps
which have been taken in implementing this project, as well as the
objectives which have been formulated in adapting the original
model to the current realities of the loca] AIDS epidemic.

Given the apparent promise of this research and interventiion
Hh

Epidemiologic Parameters- A review of the AIDS epidemic within the
IV drug using population of Illinois shows that this risk group is
presently at a relatively early stage of progression. Through
April, 1987, Centers for Disease Control statistics show that
Illinois accounts for only 2.6% (903) of the nation's total AIDS
cases (35,219). Within the State, only 11% (98) of diagnosed AIDS
patients reported histories of IV drug use. Of these, over half
(SO) also reported homosexual or bisexual risk factors. As one
would anticipate from the geographic distribution of IV drug users
in the State, AIDS cases with IV risk factors have heavily

represented the Chicago metropolitan area (96%). Approximately 83%
of these cases come from Cook County, 8% from collar counties, and
1% from downstate. To date, 58% of the IV risk factor cases have

been white, 31% black, and the remainder Latino (123%).

 

 
 

 

iven the fact that blacks have historically represented over half
of Chicago's admissions to treatment for problems relating to IV
drug dependence, the racial distribution of AIDS cases with IV risk
factors to date would appear to reflect an underrepresentation of
blacks within this high risk group. It is suspected that this may
be attributed to a progressing pattern of HIV infection which
originated among individuals having both homosexual] and IV risk
factors who became a vector of transmission to heterosexual IV drug
users through needle sharing practices within drug distribution and
user social networks. The fact that IV risk factor cases so far
have disproportionately represented males (96%) and individuals
also reporting homosexual or bisexual risk factors (58%) adds some
weight to the plausibility of this interpretation. AS a
consequence, it is anticipated that blacks, females, and
individuals with only IV risk factors will increase in prominence
over the coming years.

Although a number of seroprevalence studies are being planned and
implemented in the Chicago area, to date, insufficient data has
been collected to accurately estimate rates of infection within the
IV risk population. However, rough projections based on a pool of
approximately 70,000 IV drug users and a doubling of AIDS diagnosed
cases every 10-12 months suggest a saturation of infection among [V
risk groups within the next five or less years. AS a consequence.
a mobilization of resources focusing on intervention programming
itor this high risk population was determined to be most appropriate
o Chicago's current epidemic stage and to hold greatiest promise
for moderating further spread of infection within this State.
dhgoin monitoring of patterns and trends of substance abuse in
Chicago and Illinois (Wiebel 1979-1986) has shown the city's high
ri IV drug using population to be composed of social networks
which can ‘be distinquished based upon community of residence, race,
age,\ and .preferred drugs. Although most Chicago drug users,
inclu Ling those who Favor the intravenous route of administration,
engage in patterns \of multiple drug consumption, the use of a
primary or preferred drug most often dictates the consumption
patterhs for additional intoxicants. Patterns of combined drug use
include the consumption of secondary substances to: 1) potentiate
the effect of a primary drug (as is the case with heroin addicts
who take depressants to “boost” the effect of low purity heroin):
2) counteract unpleasant effects of a primary drug (as is the case
with compulsive cocaine abusers who take opiates to moderate the
over-stimulating effects of chronic cocaine administration); and 3)
to produce unique interaction effects (as in the case of Talwin and
pyrabenzamine or "T's and Blues"). In rank order of frequency of
use, the most commonly injected substances in Chicago are: heroin,
cocaine, Preludin or Ritalin (pharmaceutical stimulants), Dilaudid
or other pharmaceutical opiates, PCP, and MDA.

Referring back to the epidemiologic profile of IV risk factor AIDS
cases in the city to date, the highest residential concentration of
gays in the city occurs on the northside. Individuals who are both
gay and drug injectors are most often marginal to the mainstream
homosexual community and commonly include male prostitutes

 

 
 

hustlers) and transsexuals or cross-dressing gay males (queens).

Ethnographic monitoring of these groups has shown Preludin, heroin,
and MDA to be the most prevalent drugs injected. Because these
groups were believed to be included within the epicenter of
epidemic activity in relation to IV risk factor cases, the AIDS
Outreach Intervention Project targeted the city's northside in the
initial phase of its implementation schedule. Subsequently, the
Project has been expanded to include IV drug using networks on the
city's south and west sides,

Intervention Model Objectives- The primary goal of the
intervention model being demonstrated is to reduce the spread of
AIDS among intravenous (IV) drug abusers and their associates.
Through adapting the Chicago Community Outreach Intervention Mode]
to the specific requirements of the AIDS epidemic, the project is
seeking to implement and refine a range of strategies promising a
high degree of impact and efficiency in addressing this goal.
Specific objectives deemed to be crucial to the success of the
project's community-based AIDS intervention mode) are: 1) to
identify and access target populations: 2) to increase awareness of
AIDS and knowledge of high risk behaviors; 3) to encourage
individual risk assessment and offer a range of viable alternatives
to high risk behaviors; 4) to reinforce the adoption of risk
reduction measures; and 5) to extend project impact by enlisting
members of target populations as prevention advocates willing to
further disseminate AIDS information and promote prevention
measures.

1) Identifying and accessing target populations is an obvious
prerequisite to any effective intervention. Yet, simply contacting
active IV drug users can be problematic given the covert nature of
their activities and their relatively disorganized social

structure. AS a practical solution to this problem, various types
of outreach strategies have been adopted by many of the country's
existing intervention programs. Consistent with the Chicago

Community Outreach Intervention Model, this demonstration employs
indigenous fieldworkers as a part of its community-based outreach
and social networking strategy. Indigenous staff function as "AIDS
prevention advocates” within targeted networks and deliver
intervention services at the congregation sites where IV users
gather (i.e. parks, bars, poolhalls, drug “copping” areas, and “red
light" districts).

In addition to offering an efficient means for accessing IV drug
users and their associates, outreach has the advantage of providing

personal contact with targeted populations. Conveying a message in
person can be much more convincing than relaying it by other
means. Further, issues can be discussed and questions answered.

By employing indigenous leaders as members of community outreach
teams, prevention/education information can be conveyed in a manner
which is readily understood by the intended audience. Finally, in
being able to appeal to common frames of reference, indigenous
staff are likely to be more persuasive in promoting the adoption of
risk reduction measures.

 
 

 

.) Increasing AIDS awareness is necessary in order to establish the
foundation of Knowledge required to promote the adoption of risk
reduction measures. The first of three objectives related as a
staged educational sequence, this project's second, third, and
fourth intervention objectives address a cumulative acquisition of
information which is both logically cohesive and developmentally
supportive in encouraging the adoption of risk reduction measures.

In our preliminary efforts to provide AIDS education to IV drug
users in the Chicago area, we encountered a surprising degree of
resistance. Not only were current levels of knowledge about AIDS
found to be low among many active IV drug injectors, but many
addicts were found to be denying the relevance of AIDS to their

lives. Thus, for those individuals using denial as a defense
mechanism, attempts to offer information were rejected and the
potential to promote behavioral change was severely limited. AS a

consequence, it was realized that in high risk populations that are
not fully aware of the threat posed by AIDS, the need to establish
its relevance is a crucial prerequisite in attempts to increase
general levels of awareness.

In promoting increased levels of awareness about AIDS and
associated risk factors, this demonstration first confronts
targeted groups with the basic evidence required to convince them
that the threat of AIDS is a very real and present danger. Then,
basic AIDS information sharing can proceed in an attempt to foster
a growing level of concern which will eventually serve to prompt
behavioral change.

op ) Encouraging a realistic assessment of individual risk and
offering a viable range of alternatives to high risk behavior,
intends to provide individuals with the interpretative framework
needed to translate basic AIDS information and risk reduction
alternatives into a concrete and personal context. Specifically,
individuals must be offered a.means to systematically examine their
personal habits. and life-styles in a manner which enables them to
identify all behavior patterns which may place them at significant
risk. iThen, by considering the adoption of various risk reduction
alternatives, individuals can begin to evaluate the relative merit
and implicaltions of these options in terms which are personally
meaningful,

In \eesetind subjects to accomplish this persona] level of risk
analysis, our current program in Chicago has evolved to include
what we believe to be an innovative and unique component. That is,
to cohvey a simple, albeit crude, method enabling individuals to
assess\ the relative risk of any given behavior on an ongoing
basis. Thus. in addition to encouraging subjects receiving
targeted interventions to evaluate their previous and current
behavior patterns in relation to risk factors, they are also
provided with a risk assessment technique which includes the
criteria and conditions which are necessary for the virus to be
spread. This technique is explained to subjects by outreach staff
who then guide them in applying it to assess the risk of various
behaviors they have engaged in. After reviewing the relative risk

 

 
 

Sf previous behavior patterns, subjects are encouraged to invoke
and use the technique whenever they find themselves in a situation
which may pose a threat. In contrast, the approach of most other
Programs to risk assessment includes a categorization of specific
practices within a classification scheme of high, medium, or low
risk. In reviewing behaviors classified as high risk, individuals
can identify those that should be of concern to them, but the
inclusion of many other practices which maybe foreign to personal
consideration hinder attempts to commit the scheme to memory.

The risk assessment technique incorporated in this intervention
model is believed to offer significant advantages over standard

practice in at least two respects. First, it involves the subject
as an active participant in the process of risk assessment. In

addition to determining specific behavior patterns which need to be
changed to reduce risk, it fosters an understanding of the factors
involved in contributing to risk. Through integrating the very
‘ basic and easily understood principles and formula, the subject is
elevated from being a passive recipient of information about what
he shouldn't do, to an active participant in an evaluation process
which is understood and can be independently applied. Second, in
providing subjects with a conceptual framework which enables them
to independently assess the relative risk of any behavior, this
approach encourages intervention Subjects to continue using the
model in the future. If targeted populations are expected to
assimilate a sustained concern about the threat of AIDS, then it is
important to provide them with the means to evaluate and control
their risk on an ongoing basis. Given the fact that some degree of
risk is an inevitable component of everyday life, this approach
empowers individuals to control their AIDS risk status through
conscious and calculated decisions rather than allowing it to
remain a product of unknown influence.

A crucial component of this strategy requires that individuals be
provided with a range of viable options to the high risk behaviors

they engage in. The more risk reduction alternatives that are made
available to an individual for consideration, the more likely at
least one of the options will be accepted for adoption. To the

extent that AIDS intervention strategies are reliant on voluntary
compliance in attempting to encourage the adoption of risk
reduction measures, it is imperative to identify and promote
options which are both practical and appealing from the perspective
of targeted populations. Risk reduction alternatives which are not
compatible with the social norms and values of target groups in a
community setting can not be expected to receive significant
endorsement.

Consequently, the specific risk reduction messages to be promoted
in this demonstration are not be a fixed set of options, uniformly
applied to all targeted populations. Rather, they include a
flexible assortment of alternative methods and behaviors which
achieve the primary goal of moderating further spread of the

virus. The selection of specific messages and methods for
Promoting them within various target populations are the subject of
ongoing review and refinement. By attempting to identify new risk

 

 
 

 

eduction options and modifying existing prevention approaches over

time, we, hope to establish an effective mix of options which are
most ‘amenable to adoption within the various groups targeted for
intervention. Once compliance with any of the risk reduction
alternatives has been accomplished, efforts are directed toward
encouraging subjects to adopt further measures offering greater
degrees of protection.

Based on experience to date, this approach is particularly well
received by addicts because it relies on their own interpretative
framework to first identify unacceptable risks and then to
determine the risk reduction alternatives which are most compatible

with personal requirements. AS a consequence, this pragmatic
orientation is anticipated to offer maximum influence in at least
two crucial respects. First, in achieving the highest degrees of

voluntary compliance in the adoption of risk reduction measures.
Second, in offering a structural flexibility which most readily
adapts to the cultural sensitivity needed to formulate effective
prevention/education interventions for minority populations.

4) The reinforcement of risk reduction measures is the fourth
overall intervention objective and the final component of our’
staged educational sequence. To attain the highest possible levels
of compliance with risk reduction measures and to sustain these
over time, it is necessary to follow-up on initial interventions
with an ongoing campaign that serves to both maintain high levels
of awareness and to reinforce intended behavioral] change. .

A major thrust in our efforts to reinforce risk reduction includes
encouraging individuals to adopt further measures which offer
greater degrees of protection against infection. Given initial
emphasis on identifying any means of risk reduction which can be
accepted by subjects, subsequent efforts attempt to establish these
gains as a foundation for the consideration of further measures.

To avoid target populations from becoming bored with or simply
"turning off" to repeated messages, the content of specific
information and risk reduction techniques being promoted is subject
to ongoing revision and change. Thus, an evolving series of
complementary prevention messages will be presented in multiple
contexts in order to both maximize exposure and reinforce content.

5) The final objective of our intervention model focuses on an
extension of intervention impact. While it is expected that the
direct influence of project initiatives will be responsible for
generating a significant momentum within target populations to
support the adoption of risk reduction measures, it is neither
necessary nor desirable to confine efforts to direct intervention.
By supplementing primary programming with a range of complementary
strategies, it is possible to both reinforce and extend the
influence of direct interventions.

Accumulating experience to this point suggests that fostering a
sense of "prevention advocacy" among targeted populations is one of
the most promising approaches avallable for extending intervention

 

 
 

mpact. It ,is this same type of internal, protective response to
the epidemic which has been so effective within the gay community.
While IV drug users and other nonaffiliated risk groups lack the
fully developed social structure and network of social institutions
which have contributed to the success of this response in the gay
community, the potential influence of advocacy within less
organized risk groups should not be totally dismissed. In fact, we
have found that as addicts become aware of the threat that AIDS
poses, they are quite capable of assimilating a strong sense of
social responsibility which can be readily channeled to include an

assumed role of prevention advocacy. The sphere of influence upon
which any given individual can be expected to have impact, is, quite
naturally, limited to established social networks. Yet, the

cumulative effect of promoting prevention advocacy among target
populations is anticipated to be a significant factor in helping to
achieve this intervention model's primary goal.

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Division of Prevention and Communications, DHHS Pub. No. (ADM)
86-1488, August, 1986.

 

Newmeyer, J., "San Francisco Report." Presented at the NIDA
Community Epidemiology Group Meetings, Miami, Fl., Dec. 1985.
Nichols. E., Mobilizing Against AIDS - The Unfinished Story of a

Virus. Cambridge, Mass: Harvard University Press, 1986.

 
 

‘reble, E., and J. Casey, “Taking Care of Business: The Heroin

 

User's Life on the Street," International Journal of the
Addictions, 4:1-24, 1969.
Redfield, R., et al., “HeteroSexually Acquired HTLV-III/LAV Disease

(AIDS Related Complex and AIDS): Epidemiologic Evidence for
Female-to-Male Transmission,” JAMA, Vol. 254, No. 15:2094-2096,
October 18, 1985.

Selwyn, P., "AIDS: What Is Now Known." Hospital Practice, 127-164,
June 15, 1986.

Shick, J., W. Dorus, and P. Hughes, “Adolescent Drug Using Groups
in Chicago Parks," Journal of Drug and Alcohol Dependence,
3:199-210, 1978.

Shick, J., and W. Wiebel, "Congregation Sites for Youthful Multiple
Drug Abusers: Locations for Epidemiological Research and

 

Intervention," Journal of Drug and Alcohol Dependence, 7:63-79,
1981.
Van de Perre, P., et al., "Female Prostitutes: A Risk Group for

Infection with Human T-cell Lymphotropic Virus Type III." The
Lancet, 8454:524-526, September 7, 1985.

Wiebel, W., “Chicago Drug Epidemiology Reports." Semi-annual
Research Updates to the Nationa] Institute on Drug Abuse,
Community Epidemiology Work Group. Rockville, Md.: Division of
Epidemiology and Statistical Analysis, NIDA, 1979-1986.

 

Wiebel, W., “Factors Influencing Personal Decisions to Use Heroin."
In Chemical Bonds: The Socio-Cultural Matrix of Alcohol and
Drug Use: A Sourcebook on Patterns, Preventions, and

 

Treatments, B. Forster and J. Salloway (eds), Wadsworth
Publishing Co., (Forthcoming).

Wiebel, W., "Recommendations to the Illinois AIDS Interdisciplinary
Advisory Council on Issues Relating to Substance Abuser Risk
Groups," Chicago: Illinois Department of Public Health, 1986.

Wiebel, W., "Local Report: Chicago," International Working Group on
AIDS & IV Drug Abuse Newsletter, Vol. 2, #1 May, 1987.
Winkelstein, W., et al., "Potential for Transmission of

AIDS-Associated Retrovirus from Bisexual Men in San Francisco
to Their Female Sexual Contacts." Letters, JAMA, Vol. 255, No.
7:901, February 21, 1986.

W. Wayne Wiebel, Ph.D.
Epidemiology & Biometry Program
School af Public Health
University of Illinois at Chicago

 
 

RECOMMENDATIONS
TO THE
ILLINOIS AIDS INTERDISCIPLINARY ADVISORY COUNCIL
“ ON
ISSUES RELATING TO SUBSTANCE ABUSER RISK GROUPS

Substance abuse is associated with the AIDS epidemic both directly, as a
mode of transmission through shared hypodermic paraphernalia, and
indirectly, as a suspected factor increasing risk through the
immunosuppressive effects of abused substances and reduced compliance with
risk reduction measures as a result of the impaired judgement associated

with intoxication.

As a high risk group, intravenous (IV) drug abusers rank second to
homosexual and bisexual males in frequency of appearance among diagnosed
AIDS cases. However, the proportion of IV risk group cases in various
geographic areas ranges widely from the national average of 17%. For
example, Chicago statistics reveal only 8% of AIDS cases in the IV risk
category through 1985 in contrast to over one-third of the New York City
cases and over half of the cases in Newark, New Jersey.

This disparity in the proportion of IV drug group cases has led some
experts to speculate that this risk group may represent a second wave of
the AIDS epidemic. Case surveillance in the New York City, northern New
Tlersey region clearly shows an increase in the proportion of IV drug users

th AIDS. While this region of the country has included a sizable

-jority (85%) of the nations diagnosed AIDS cases, their experience may
be of more value in their own regional projections than in predicting the
certainty of what will follow elsewhere. In fact, geographic variations
are a significant obstacle to confident projection of general trends in a
number of respects. For example, in addition to increasing numbers of IV
AIDS cases in the New York metropolitan area, recent data from both New
York and San-Francisco show that new AIDS cases among gay and bisexual men
have begun to stabilize. Yet, in an article on this subject in American
Medical News (Jan 24/31 1986), the chief of statistics at the Centers for
Disease Control's AIDS program revealed that national data does not
reflect any such stabilization at this point in time. Should other
geographic areas at less advanced stages of epidemic progression follow
this trend, our certainty regarding the impact of interventions in
changing behavior and slowing the rate of transmission will be greatly
increased. Following an optimistic scenario, effective intervention
programming for drug abusers should offer the possibility of minimizing
infectious spread in populations at less advanced epidemic stages and thus
avoiding the certainty of following New York's trend.

In addition to their significance as a risk group in the composition of
AIDS cases, IV drug abusers pose a further threat in the future course of
the epidemic as a potential vector of transmission to the general
population (Ginzburg et al. 1985). This would seem most likely through
sexual contact, particularly with prostitutes who are IV drug abusers,
~lacing a large segment of heterosexuals from the general population at

isk for exposure to the virus. Should sufficient numbers actually become
anfected, the likelihood of further spread through sexual contact to
others also now considered at low risk, greatly increases.

 

 
 

tervention - Until such time as some variety of large scale medical

ervention becomes available, the only remaining method available for
influencing the course of the epidemic is through interventions promoting
adherence to risk reduction measures among high risk group populations.
The discovery and widespread adoption of screening tests for the HTLV-III
antibody by blood banks has all but eliminated the possibility of patients
being inadvertently exposed to the virus from contaminated supplies of
blood or blood products. This leaves IV drug abusers and homosexual or
bisexual males as the remaining risk groups for targeted interventions.

To date, efforts directed toward reducing sexual transmission of AIDS have
been most prominent and intensive. By late 1982, the first public
messages of AIDS being sexually transmitted were noted in San Francisco's
homosexual (gay) community and since then community resources directed
toward intervention have expanded with the epidemic (Herron, 1985). As
evidence aboutit AIDS accumulated, gay communities in other major
metropolitan areas were quick to follow San Francisco in covering
developments in the community press and in fostering risk reduction
measures. By 1984, the first indirect scientific evidence of changing
sexual practices among homosexual males was published in the Mortality and
Morbidity Weekly Report (June 1,33:295-97) adding credence to the growing
anecdotal accounts of the gay community's acceptance of risk reduction
measures. Since then, a number of studies have helped document changes in
sexual behavior among gay and bisexual males in response to the AIDS
epidemic (JAMA 1986,255:171).

{le prevention and education interventions directed toward the adoption
risk reduction measures can not promise a drastic reduction in AIDS
cases, our progress to date is nevertheless encouraging in that they
demonstrate the potential of such efforts to produce significant results.
Given the fact that such interventions must rely on persuasive appeal to
prompt behavioral change and are furthermore dependent upon voluntary
compliance, it is not realistic to expect the immediacy or degree of
impact attainable through interventions (like antibody screening of blood
donations) over which there are more exacting controls. Instead of
promising a halt in high risk behaviors, interventions based on education
and the adoption of risk reduction measures should more appropriately be
judged in relation to their ability to moderate such behaviors and, in so
doing, slow the progress of the AIDS epidemic. It is in this light that
preliminary indications of behavioral change in the sexual practices of
gay and bisexual males can be interpreted as being very promising.

Despite the fact that the risk of parenteral transmission of AIDS through
the sharing of hypodermic paraphernalia has been recognized as a mode of
transmission since the dynamics of the disorder's spread were first
studied, intervention efforts targeting the IV drug abuser risk group have
trailed substantially behind those for gays. X

A variety of factors can be seen as having contributed to this
discrepancy. Most obviously, the disorder itself has disproportionately
impacted homosexual and bisexual males to this point in the epidemic's
-pogress. Secondly, much of the intervention activities directed toward

le sexual transmission of AIDS have originated within the gay community
itself and have been reliant upon internal community institutions, like

-_

 
 

 

 

“e gay press, for their success. Finally, as an organized though highly
rersified community, gay groups have been able to exert their influence
vaternally to mobilize resources and coordinate intervention initiatives.

Unlike the gay community, intravenous drug abusers have little in the way
of social organizations and _ institutional supports to bond them together
as a viable community. * Lacking. the internal rmechanisms to share
information, mobilize resources, or coordinate activities, intravenous
drug users have been almost totally dependent upon external sources for
AIDS intervention. While some such programming was underway by 1984, most
notably in San Francisco and New Jersey, it was not until 1985 that these
initiatives began to reach out in a concerted fashion.

Irrespective of the factors which have contributed to the relative infancy
of AIDS intervention programs for high risk substance abuser populations,
the public health implications of failing to effectively intervene in the
progress of the epidemic among this group has become increasingly apparent
and ominous. As important as the IV drug abuser risk group is, our
knowledge about them suggests that they will present an extremely
difficult and challenging target for intervention.

First of all, the same factors which have contributed to a lack of
internally initiated AIDS interventions among IV risk groups are likely to
also present obstacles for externally initiated interventions. As a
group, IV drug users have little more in common than their participation
in similar illicit activities. Outside of the drug distribution systen
ich supplies their largely unique needs and the formal treatment systen
ich addresses their acute or chronic clinical needs, there are
relatively few organizational or institutional supports which serve to
unify individuals in this high risk category as a group. As a
consequence, even as basic a task as accessing them is problematic.

Further confounding the problem of intervention for this group, IV drug
abusers are notorious for their resistance to voluntary change when it is
perceived to hamper or interfere with their primary goal of “getting high"
on drugs. As a group already predisposed to self destructive behavior and
often disinterested in general issues of health and hygiene, the prospect
of encouraging substantial adherence to risk reduction measures is likely
to require substantially more effort and ingenuity than was the case in
the gay community. .
Preliminary reports from New York City, however, suggest that behavioral
change among IV drug users in response to the threat of contracting AIDS
is not an>o>unlikely prospect or unreasonable expectation. In the New
England Journal of Medicine (12/5/85, p.1476), Des Jarlais and Hopkins
report that the demand for new needles and syringes among New York City
street addicts has been sufficient to foster an illicit market in used
hypodermic paraphernalia which has been resealed in packages and
misrepresented as being new in order to command a presium price. Although
such evidence can hardly be interpreted as being.a positive development,
the ‘fact that behavioral change is evident and that, based on personal
-ommunication with Des Jarlais, it is more likely a consequence of
‘areness based on general media coverage than the result of relatively
zimited intervention activities, offers promise for targeted
interventions. Further hope of intervention potential for this group is

 

 
 

‘ggested San Francisco's experience to date. There, an aggressive
-ervention campaign targeting IV drug abusers began to gain momentum in
984, before AIDS cases in this risk group began to reflect a major
problem. Current statistics from this region of the nation show, like New
York, a decline in the numbers of new cases among the gay and bisexual
risk group but, unlike New York, no dramatic increase in cases from the [IV

drug using risk group. -

Perhaps the greatest uncertainty in the adoption AIDS intervention
programming for substance abusers at this time is our limited knowledge of
what will work and how best to offer it. The programs implemented in New
Jersey (French, 1985) and San Francisco (Newmeyer, 1985) seem to offer
considerable promise based on how they have addressed issues of content
and delivery given our present state of knowledge. While these and other
highly regarded programs being implemented around the country actually
share any number of features in common, I have ‘limited discussion to
specific components in these two programs with the understanding that they
are not necessarily unique and do not represent an exhaustive review of
promising efforts.

New Jersey utilizes ex-addict, public health outreach workers within their
AIDS intervention program. These individuals, already familiar with the
IV substance abuser subculture, are sent out to the streets to make
personal contact with active users and convey AIDS information along with
risk reduction measures. Hired from drug abuse treatment programs, these
workers are able to direct willing individuals into treatment as well as

fer information and answer questions of concern. oe

San Francisco has adopted a multi-level message approach in their campaign
that has appeal in offering a variety of alternatives to the addict in
options which, if pursued, will offer risk reduction. Addicts are first

encouraged\ to stop injecting drugs and seek treatment. If they are not
willing to stop injecting, they are encouraged to stop sharing needles.
If they do not have access to sterile “works", they are encouraged to
sterilize available equipment themselves and to follow this: procedure
after each occasion of use. San Francisco also employs the equivalent of
a "media blitz” in their intervention approach. The same message appears
again and again in various contexts and mediums. .

Based on present knowledge, all these components seem pivotal in
contributing to a successful strategy. As previously mentioned, simply
accessing IV drug users can be problematic, yet it is an obvious
prerequisite to any effective intervention. Outreach appears to be one
very promising means of resolving this issue and it has the additional
benefit of providing personal contact with the target group. Conveying a
message in person can be much more convincing than simply relaying it by
other means. Issues can be discussed and questions answered. By
employing workers familiar with the target group, a further advantage is
realized. Intervention messages can be ‘conveyed in a manner which is
readily understood by the intended audience and, in being able to appeal
to a common frame of reference, it is likely to be more persuasive. In
attempting to change behavior, viable options must be offered to

scomplish desired ends and by increasing the number of options available,
.he numbers of individuals willing to follow at least one is also likely
to increase. Repeating intervention messages in multiple contexts and
mediums serves both to maximize exposure and to reinforce content.

 
 

 

tervention programming for IV substance abusers whith: includes

mponents like those discussed above are believed t6°‘bé the best
alternative available to. us at this time. In targeting this high risk
population, we must consider education for professionals in the substance
abuse field to both increase their awareness of associated problems and to
enlist them as prevention advocates to reinforce risk reduction measures.
Clients in treatment are important both as a component of the high risk
population and in the fact that they are a relatively easy group to
access, Finally, if our efforts are to have any hope of long term impact,
active intravenous drug users must be included in intervention outreach
efforts to ensure that risk reduction begins within the social networks
where transmission of the virus is currently most likely.

Applied Research- In order to provide a more efficient and effective
response to the AIDS epidemic over the long term, many gaps in our current
understanding of both the epidemic and of effective intervention

programming must be addressed.

In particular, the relationship of substance abuse to the epidemic's
progression must be examined in much greater detail. At the most basic
level, epidemiologic studies monitoring AIDS prevalence within this high
risk group need to be implemented. Further, exploratory investigations to
advance our understanding of the role of substance abuse in the dynamics
and patterns of AIDS transmission are as likely to have profound
- implications in the public health arena as they are in the substance abuse

"“ield. Prospective monitoring of high risk groups is needed to begin
rting out those characteristics and behaviors associated with relative
-isk and those involved as predisposing co-factors. Given the suspected

significance of behavior in influencing a range of outcomes, it is
imperative that we pursue focused investigations of behavior patterns in
their natural social context. Studies relying solely on reported behavior
simply can not offer the descriptive detail or the flexibility of analytic
focus needed to advance our present understanding, nor can they offer
adequate protections from reporting errors given our present levels of
uncertainty. Furthermore, our practical planning and intervention
Programming needs suggest that an analysis of factors influencing behavior
and the change of behavior may be a crucial focus of inquiry in
investigations of high risk behavior patterns.

Our present state of uncertainty regarding effective intervention
approaches suggests an additional focus of applied research which must be
addressed. In order to respond to the evolving realities of the AIDS
epidemic, we will need to increase our understanding of the types of
programming which work best for various categories of substance abusers
within a meaningful high risk group classification scheme. We will
further need to know the approximate levels of impact that can be
anticipated from alternative approaches and how these differ by the
characteristics of various target groups. To ensure that any
interventions_which are implemented produce desired results, we must be
able to identify both those features which are crucial to a successful
outcome and those which should be avoided.

 

 
 

 

carvice Delivery System~ Given the certainties of what is known, in

junction with reasonable projections of what can be expected over the

ct few years, the high risk population of substance abusers is
anticipated to reflect an increasingly significant proportion of AIDS
cases in this State. The impact this increase will have on various
service delivery systems must be assessed and subject to ongoing revision
in order that appropriate pianning can be instituted to gear up system
capacities for future requirements.

One component of the service delivery system likely to be affected are
treatment programs for problems relating to substance abuse. In part,
these programs are expected to face escalating demand for treatment slots
as levels of AIDS awareness increase among active intravenous drug users
leading them to seek help for the drug problems that place them at high
risk. In addition, the thrust of intervention programming for this risk
group first attempts to encourage active users to enter treatment as a
preferred option in risk reduction. Thus, we can expect both individual
and programmatic influences contributing to a greater demand for substance
abuse treatment services. Given the fact that almost all the treatment
programs which have traditionally served IV drug clients are already using
waiting lists to defer service for new clients, provisions will be
necessary to expand capacities and ensure the availability of treatment
for addicts wishing to reduce their risk of contracting AIDS. A failure
to acknowledge this problem and accommodate for the growing demand in
treatment services may severly compromise the effectiveness of any efforts
to moderate the epidemics progress. For instance, the success of
‘ervention efforts targeting active members of the IV risk group are
ely to be significantly diluted if treatment can not be promoted as a
viable alternative for reducing risk. If treatment is encouraged but
unavailable, prevention efforts may in fact prove dysfunctional. Should
prospective clients become alienated from the treatment systen, the
desirability of this option may decline in acceptance over the long term.

The impact of growing numbers of IV drug users with AIDS on the medical
service delivery system needs to be investigated-in greater detail. While
in most respects it does not appear that their requirements for AIDS
related medical services will be considerably different than other
affected risk groups, there may be a number of notable exceptions. The
most obvious being a potential increase in the numbers of AIDS cases among
infants who are at risk for perinatal transmission from mothers who are

theaselves carriers of the virus.

W. Wayne Wiebel, Ph.D.

University of Illinois at Chicaco
School of Public Health
Epidemiology & Biometry Program

Summer, 1986

 
 

REPORT TO THE PRESIDENT'S COMMISSION ON AIDS
presented on December 18, 1987
by
Robert E. Bixler
Deputy Director for Aids. Education and Training

Training Institute
Narcotic and Drug Research, Inc.

Dr. Primm and members of this distinguished panel, I thank
you for this opportunity to address you concerning the major
task of AIDS education outreach to the intravenous drug
using population. As you well know, the spread of the
epidemic among intravenous drug users and their sexual
partners is cause for grave concern.” With no known cure
aud only limited effective treatment, prevention continues
to be our main hope for halting or at least slowing the
Spread of infection. There are several major concerns that

need to be addressed in focusing prevention efforts on this

population.

First, AIDS and chemical dependency are inextricably
interwoven in this country. One cannot respond to one and
ignore the other. Efforts need to be made at every possible
contact point to educate intravenous drug users and their
sexual partners about risk reduction. From street corners
to shooting galleries, to bodegas, to laundromats, to
Clinics, to prisons, to hospitals, to programs sheltering
the homeless, to substance abuse treatment programs

themselves, there must be ongoing education. This education

 

 
 

 

must be in a language and style that is meaningful to the
population to be educated and be geared to teaching skills

and strategies necessary for risk reduction practices.

Second, intravenous drug users are both capable of changing
and willing to change their behavior, but such change
requires learning new skills, developing new strategies, and
practicing these in a supportive peer setting. Such changes
take time. There are no quick routes to behavior change.
We must be cautious of prevention efforts that create the
illusion of responding effectively to AIDS but that de not
produce the necessary change in behavior. The bottom line
of AIDS prevention is sustained behavior change, if we, do

not accomplish that then we have failed.

/

f

Third, there needs to be a recognition that just as the
disease is spread through individual acts so prevention can
only be successful through individual] change of those acts.
Thus successful prevention cannot be mandated. It can only
be accomplished through a working partnership between the
educator and those who are at risk. We cannot force
intravenous drug users to change their behavior. However,
we can work together with them and their sexual partners in
exploring and practicing ways they can protect themselves

and others from the spread of the disease.

 

 

 
 

/
This concept of partnership is critical. It is a disease

not people that we need to combat, and we cannot
successfully fight it without a partnership that includes

those who are infected and those at risk.

9

Fourth, substance abuse treatment programs must become
centers for AIDS prevention. Prevention for the I.V. user
is more complicated than for the general population. It
requires not only changing sexual practices, but also
dealing with a chemical dependency. AIDS education that
focuses. on sexual transmission while ignoring the problems
of addiction will be of limited value, and substance abuse

treatment that ignores the risk of AIDS will be equally
} /

limited. /
LAN (
i

X ?

Treatment centers "| er ja central location that provides

f

contact with a population not otherwise easily accessible.

|
Programs already have a working relationship with iclients in,

/
/

treatment, and AIDS\education can be\ incorporated into that
treatment process. Tragically, there is a shortage of
substance abuse treatment centers at a time when there is a
critical need for them in fighting the epidemic. We must do

more to expand treatment services.

Fifth, many of the problems in addressing AIDS prevention

and IV drug use are reflections of problems that are all

i

too familiar to us in substance abuse treatment. The

3

 

 

 
 

 

problems of poverty, inadequate health care, poor nutrition,
and high unemployment that plague our Black and Hispanic
communities have existed long before AIDS. For far too long
drug abuse has taken a disproportionate toll on _ these
communities. AIDS merely magnifies their plight. They
cannot be expected to carry this battle alone. Urban
centers of New York City, Newark, Los Angeles, Sar.
Francisco, Miami, should be declared federal disaster areas
with a major influx of medical and educational relief.
Minority neighborhoods with high IV drug activity in these
cities must have immediate assistance and it must be more
than brochures, condoms, anda few bottles of bleach. The
attempts of condom and bleach distribution, aithough
laudable beginning efforts, are limited in scope and
cannot be expected to accomplish the necessary immediate
outreach that “is vital to these communities. We need a
concentrated aggressive combined medical and educational
effort in our urban minority neighborhoods to teach people
how to stop the spread of this disease and to assist ticse
who are already infected with getting the medical care they

need.

Finally, a major barrier to AIDS prevention is an public
inadequately informed about AIDS issues and ill prepared to
accept HIV infected people into their communities. There
are far too many throughout our country who believe that
they can best keep AIDS away from their homes by opposing
substance | abuse treatment programs and AIDS prevention

4

 

 
 

projects. We cannot reach out to the sick, the infected, or

those at risk in an atmosphere that promises rejection or

punishment if they identify themselves. We need a massive

' National public education program that reassures the public

 

that they need. not fear those who are infected, that
individuals can protect themselves and a national commitment
‘to fight discrimination against those who are infected. We
must prepare our communities to accept the sick into their
midst, support them in their efforts to live, and provide

.much needed support for their families.

There are thousands of families throughout the country
quietly, fearfully suffering alone because they are
terrified of what others will do if they discover one of
their family has AIDS. This suffering by no means is
limited to our urban areas. Just as there were thousands
who suffered greatly and silently that never saw the
battlefields of Vietnam so there are thousands throughout
the country suffering who have never seen the urban
battlefields of AIDS. We need to band together as a nation
to fight this disease. We owe it to ourselves and to those
who are infected, to assist our country in overcoming its

profound fear of AIDS so that we can face this disease

together.

 

 

 
NT

THE PRESIDENT'S COMMISSION ON AIDS

Addendum Essay to Report
"NOT IN MY WORLD"

Robert E. Bixler
Deputy Director for Aids Education and Training

Training Institute
Narcotic and Drug Research, Inc.

For the , past six years in the United States, there has been
widespread denial of the severity of the AIDS epidemic and the
extent of infection with HIV. Throughout the country, people
acknowledge that AIDS exists, but for most people, AIDS does not
exist in their world. It does not affect them. AIDS involves
others who are not like them. It artects Gay men, IV drug
users, hemophiliacs, prostitutes, and’ Central Africans. For
most people, yes AIDS exigts--but not for them, not for their

7 {
children, not fin their world. '

/

 

Even in ithe so called "high risk groups" there are those who try
to comfort themselves through such denial. AIDS isn't in their

world either. Gay individuals know that AIDS affects Gay men,

 

but not in their community, mot among their friends. For IV
drug users, AIDS might attack their population but not users
whom they know or with whom they have shared works. In a sense
the universal denial has taken the following form--"I know my

friends and my friends would not give me AIDS."

 

 
 

 

Thus for far too many people, AIDS has become a part of the
world of the stranger, the foreigner, the different, and the
task of AIDS prevention has become a challenge to keep AIDS

from getting into the world that they know.

This further complicated by the tendency for some to view Aids
as being spread by unknown strangers who prey on the innocent,
and thus communities have begun to look for strategies to
protect themselves from these strangers. During instances in
which AIDS has broken into the familiar world of the school, the
hospital, the church, the cry from the community has been, "Keep
AIDS out." This cry has almost universally been expressed,

"Keep those who have AIDS away from us."

This demand, although understandable in the face of a
frightening disease, cannot become the basis for AIDS prevention
planning. It has already resulted in proposals for mandatory
testing, for quarantine, and for testing visitors to cities, or
countries. These proposals are designed to "keep AIDS away."
They presume that the identification, control, or isolation of
those who are infected will enable those not infected to live

life as they always have.

Prevention proposals designed to keep AIDS away, to consign AIDS
to the world of the stranger, create many needless problems and
ultimately will not halt the spread of the disease. Such
proposals result in. frighteningly repressive acts that

2

 

 
Pi

at

needlessly separate and alienate individuals, groups, and-
countries at a very time when there is a great need to work
“together in the fight against this disease. These proposals
- promote a needless fear of the unknown other, of the stranger,
of the different. Most importantly, such proposals create the
illusion of protecting people while allowing those who are not
infected to continue, without question or challenge, practices

that put them at risk.

We need to avoid the temptation to form battle lines pitting the
the infected against the non-infected, the high risk against the
low risk, the stranger against the friend. If we are to
successfully halt or slow the spread of this infection, then we
need to form a partnership among all these groups. It is a
disease, not people, that we are fighting, and approaches which
alienate or attempt to control some individuals in order to
protect others will only undermine our effectiveness in fighting

it.

Rather than trying to keep AIDS out of our world, we need to

ecognize that AIDS does exist as a part of our lives. It is
,

 

critical that we accept AIDS into the world of our experience

so that we can learn more about the disease, the particular ways . -
* id \e™

we may be at risk, and the changes in behavior through which we

can protect ourselves.

 

 
 

 

It is important to remember that AIDS IS PREVENTABLE.
Individuals have within their means the power to keep from
becoming infected. Effective prevention need not require
government quarantine, mandatory testiry, or exclusion of sero-
positive travelers. It requires public education and individual
behavior change. With the exception of transfusions and blood
products (now basicly controlled), AIDS does not come in the
form of the stranger. It does not force itself on individuals.
It comes in the form of a friend, through intimate, clearly
defined acts, and it's transmission can be prevented through
clearly understand changes in behavior. But individuals cannot
or will not make such changes as_ long ‘as they continue to
believe that AIDS only affects the other, the stranger, the

different and not then.

The time is long over due that AIDS be brought out of the
closets of fear and shame. It is time that we stop using AIDS
as a vehicle to debate the morality of sexual practice or drug
use, that we cease using it as a form of some judgement against
others, and come to respond to it as the preventable disease
that it is. It is only when we accept AIDS into our world and
learn how to live with it that we allow into that same world the

knowledge and means for our own protection.

 
 

PRESIDENTIAL COMMISSION ON
THE HUMAN IMMUNO DEFICIENCY VIRUS EPIDEMIC

Testimony delivered by Andrea R. Bowden, Supervisor of Science and
Health Education, Baltimore City Schools.

Currently, AIDS is a disease which is fatal and is increasing at
an alarming rate. in Maryland alone 756 cases have been reported and
469 deaths. It has generated a high level of concern in almost every
segment of society and is having a profound effect on our social,
health care, and educational institutions. Growing far more rapidly
than the disease are fear and misconceptions about AIDS. Surgeon
General Koop report to the nation has said: “Acquired Immune
Deficiency Syndrome is an epidemic that has already killed thousands
of people, mostly young, productive Americans. In addition to
iliness, disability, and death, AIDS has brought fear to the hearts
of most Americans--fear of disease and fear of the unknown. Fear can
be useful when it helps people avoid behavior that puts them at risk
for AIDS. On the other hand, unreasonable fear can be as crippling
as the disease itself."

At present the only defense we have against both the physical
disease AIDS and its psychological counterpart fear is education.

This committee has the power to recommend that the young people of
America receive factual, age appropriate instruction about AIDS
delivered by a trusted adult. You have the power to recommend that
school systems cooperate with health departments offer information
about AIDS for staff and parents. You have the opportunity to
increase the growing number of states, such as Maryland which
Yespite opposition of pressure groups, have enacted regulations which
require schools to take the leadership in combatting AIDS through
education which can influence them not to engage in behavior which
will put them at the risk of contracting AIDS. Your action can result

se

in saving the lives of young people in this country. 5

if

We in Baltimore City Schools have a particular concern about ~
AIDS education because we have a population which is at high risk for

 

 
 

HIV infection. Last year Baltimore ranked second among 63 cities in
the rate of gonorrhea infection and second in teen pregnancies with
5,328 recorded. According to surveys nearly 10% of students admit to
using drugs intravenously. There are 279 AIDS cases and 175 AIDS
deaths in the Baltimore area with unknown thousands of persons
infected with the AIDS virus. Because of this we mandated AIDS
education in grades 6-12 last school year and have been awarded a
$125,000 grant from the Centers for Disease Control in Atlanta,
Georgia for expansion of student and staff education about AIDS for
this school year. In our 1986-87 school year effort we reached
approximately 40,000 students using lessons and presentations
developed by Baltimore City Schools, Baltimore City Health Department
and the Maryland Department of Health and Mental Hygiene. Ninety
percent of teachers rated student response to the lessons as very
positive or good. A knowledge test administered to a sample of middle
school and high school students showed that the average score was 87%
correct. 85% indicated that they had learned valuable things about
AIDS. 79% said that "because of what | know about AIDS, I intend to
abstain from sex or engage only in safe sex" and 81% said "because of
what | know about AIDS, | intend to abstain from the use of IV
drugs." 85% indicated that the AIDS epidemic has made them think
more about personal sexual behaviors and an encouraging 72% have
discussed AIDS with their parents.

While the Spring 1987 AIDS education initiative seems promising,
it is significant to note that a number of students were not reached.
These include most Special Education students, grades 6-12, in science
and health classes and regular students in physical science classes in
senior high. Their teachers did not receive training, nor were
specific curriculum materials provided. This group will be added to
the continued secondary school efforts. No formal program of AIDS
education was undertaken at the elementary level last year, but this
school year an elementary AIDS curriculum will be piloted in grades 3,
4 and 5 in forty schools. Our grant from CDC will strengthen our
AIDS education program and ensure its continuation. It will provide
impetus for age-appropriate lessons linking AIDS with communicable

diseases at the elementary level and stressing avoidance of drugs,

-2-

 
 

 

 

abstinence and responsible sexual behavior at the secondary level. it
will help us build on the solid foundation of support of parents,
PTA's, civic, church and community groups we already have so that
we can expand AIDS education.

Yet funding we have received from the Center for Disease Control
is not enough to do an adequate job of educating students in school.
We need additional monies for staff to design curriculum, train
teachers and monitor instruction. We must be able to continuously
update materials and provide ongoing sessions for staff, parents and
community groups.

We are particularly concerned about young people who have
dropped out of school and are at high risk of becoming involved in
drug use and other dangerous behaviors. In cooperation with public
and private health agencies and the media, we must reach these young
people. This requires creative approaches and a cluster of services
to assist such "at-risk" youth. Both are dependent upon adequate
guidance.

Young people today are being bombarded with confusing
messages. Society and the media seem to condone irresponsible sex
and drug use, yet children are advised to Say no. Some population
figures in all walks of life seem to tell young people its OK to "mess
around". Youth are encouraged to be popular, dress provocatively
and have a good time, yet they are rarely presented the consequences
of such behavior. We sell everything from cosmetics to cars with sex
yet prohibit condom advertising. In some communities educators are
even restricted from teaching about AIDS, sexuality and drug use.
The commission could take bold steps in recommending that these
topics are appropriate and necessary topics for discussion in the
home, school, and community balanced media coverage is also
necessary.

Schools reflect both the promise and perils of society.
Consequently, instructional needs, both in content and strategy,
change over time. As educators we have an obligation to make our
students aware of recent developments in all areas. No area is as
rapidly changing as that of science and health. A glance at the daily
“Newspaper will easily confirm this.

 

 
 

As educators we have an obligation to provide both information
and offer strategies to assist students in developing behaviors which
will enable theme to live happy, healthy and productive lives. We
instruct young children to wash their hands, cover sneezes and use
their own eating utensils to stop the transmission of germs. We warn
older children about interacting with strangers, playing with fire and
experimenting with drugs. Unfortunately we now must caution our
pre-adolescents and teens about yet another threat to their being:
the fatal disease AIDS. We routinely describe the dangers of early
sexual activity and drug use and now add yet another reason to avoid
these behaviors. We regularly include discussion of sexually
transmitted diseases and their prevention and now must include a
disorder far more devastating than the others. Instruction about the
immune system, viruses, congenital disorders, genetics, opportunistic
and communicable diseases has taken on a new thrust through AIDS.

We must now allow our young people to be educated about AIDS
by chance, on the street, or through unreliable sources. We must
enlist the support of parents in our efforts, must be able to depend
on them to discuss this sensitive issue with their children and to
provide guidance for them in shaping their behaviors. We must have
the cooperation of and sharing of resources by community agencies.
Finally we as educators and policy makers must speak with one voice
and uphold the right of students to have access to AIDS education in

all schools in America.