PRESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY
VIRUS EPIDEMIC

HEARING ON PREVENTION AND EDUCATION

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

Wednesday, March 2, 1988

COMMISSION MEMBERS PRESENT:

ADMIRAL JAMES D. WATKINS (Ret.), CHAIRMAN

JOHN J. CREEDON

THERESA L. CRENSHAW, M.D.

RICHARD M. Devos

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

BURTON JAMES LEE, III, M.D.

FRANK LILLY, PH.D.

BENY J. PRIMM, M.D.

PENNY PULLEN, M.D.

CORY SERVAAS, M.D.

WILLIAM B. WALSH, M.D.

POLLY L. GAULT, EXECUTIVE DIRECTOR
COMMISSION MEMBERS NOT ATTENDING:

JOHN CARDINAL O’CONNOR

COLLEEN CONWAY-WELCH, PH.D.

 

 
 

 

I-N-D-E-X:

 

PAGE

WELCOME

Admiral Watkins, Chairman 157

PANEL SIX

EDUCATION AS A PREVENTIVE MEASURE

June Osborn, M.D., Dean 157

School of Public Health, University of Michigan

Paula Van Ness, Director 159

AIDS Information/Education Program, Centers

for Disease Control

Lynne Mulder, M.S., Program Manager 162

Health Promotion and Education, Florida
Department of Health and Rehabilitative Services

PANEL SEVEN
EDUCATION OF HARD-TO-REACH YOUTH
Janet Shalwitz, M.D., Director 190
Youth Medical and Psychiatric Services, San
Francisco Department of Public Health

Virginia Price, The Bridge, Boston, Massachusetts, 193
Representing the Child Welfare League of America

June Patterson Bucy, Executive Director 197
National Network of Runaway and Youth Services

Kay Johnson, Senior Health Advisor 201
Children's Defense Fund

PANEL EIGHT

 

MINORITY EDUCATION
Herbert Nickens, M.D., Director 225
Office of Minority Health, U.S. Department of
Health and Human Services

Fernando Oaxaca, President, Coronado Communications 227
Corporation, Los Angeles, California

Ravinia Hayes-Cozier, Director 229
AIDS Education and Outreach Services, New York city
Department of Health

PANEL NINE
EDUCATIONAL EFFORTS OF COMMUNITY BASED AIDS ORGANIZATIONS
Gil Gerald, National AIDS Network 249

 

 
 

 

ROLE

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

PANEL NINE (continued)

Charles E. McKinney, M.D., Director of Education
Gay Men's Health Crisis, New York, New York

Tim Offutt, Executive Director
Kupona Network, Chicago, Illinois

Dominick Maldonado, President
Hispanics United Against AIDS, New Haven, Connecticut

Jack Stein, Executive Director
HERO, Baltimore, Maryland

Shepherd Smith, Jr., President
Americans for a Sound AIDS Policy,
Washington, D.C.

John Holloman, M.D., Chairman
AIDS Task Force, National Association of
Community Health Centers

PANEL TEN
OF THE MEDIA IN EDUCATING THE PUBLIC
CAROLYN M. WEAN, Vice President and General Manager
KPIX Television, San Francisco, California

Marcy Kelly, Chair
Entertainment Industry Task Force on AIDS

Armond Brodeur, M.D., President
National Association of Physician Broadcasters

Lawrence Wallack, Dr.P.H., Associate Professor
School of Public Health, University of California
at Berkeley

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256

260

263

266

290

293

295

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PROCEEDINGS

MS. GAULT: Ladies and Gentlemen, Distinguished guests,
Members of the President’s Commission, my name is Polly Gault. I
serve as the designated federal official and inn that capacity it
is my privilege to declare this meeting open. Chairman Watkins.

CHAIRMAN WATKINS: Good morning. Yesterday, we heard
testimony regarding prevention efforts of the public health
system to stem further spread of HIV infection. Eighteen
witnesses came before us and gave detailed descriptions of how
the various pieces of that system fit together. We heard
witnesses from federal, state and local governments who explained
how the HIV epidemic has impacted upon their organizations and
what they are going to do to meet imposed demands.

Today we will hear testimony on various educational
strategies that have potential to be primary preventive tools in
the war against the virus. It is important that when we hear the
word education we do not only associate it with a formal setting
such as the classroom. HIV related education needs to take place
at all levels of society in all locations both within and without
society’s main stream. Today, we will focus our attention on
the education of hard-to-reach youth and minorities as well as
the educational efforts of community based organizations.
Additionally, we will look at the role the media can play in
helping to educate various populations within our society.

I am pleased this morning to introduce our first panel
of talent, Dr. June Osborn, Dean, School of Public Health,
University of Michigan; Paula Van Ness, Director, AIDS
Information/Education Program, Centers for Disease Control; and’
Lynne Mulder, Program Manager, Health Promotion and Education,
Florida Department of Health and Rehabilitative Services. A
welcome to the Commission and I would like to start with Dr.
Osborn for the first statement.

DR. OSBORN: Thank you, Admiral Watkins. It is a
pleasure to be here.

Education as a means of preventing transmission of the
Human Immunodeficiency Virus is the only effective weapon we have
to contain the AIDS epidemic, and it is likely to remain so for
several years to come as drugs and vaccines present almost an
insuperable biological problems in their creation and
development. Given the awesome scope of the AIDS epidemic to
date, the need to rely solely on educational preventive
strategies sounds worrisome but our science has given us a firm
foundation of data to understand the way the virus spreads, and
the merciful facts are that the modes of spread are extremely
limited. We are fortunate to live in a society where the blood

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supply was under excellent regulatory control when the epidemic
surfaced so that that involuntary route of transmission could be
closed off quickly once the virus was discovered. We are left
with sexual intercourse and drug abuse with the sharing of
injection apparatus as the major pathways to the epidemic’s
future. .

The good news is that for the first time in human
history, individuals can avoid participation in an epidemic by
informed personal decision making. That was never an option with
polio or yellow fever. You could not amend your behavior on the
basis of knowledge and thereby sidestep contagion but you can
with AIDS, and that is a marvelous opportunity. In fact, no
vaccine will ever be as good as that. But that knowledge carries
with it an urgent duty to warn, to convey to people that there is
a new deadly virus out there that must be factored into their
decisions about sexual behavior and numbers of partners and
illicit drug use. The urgency is especially great for
adolescents and for children for if they lose in the HIV version
of Russian roulette while experimenting with lifestyles they may
later reject, the deadly AIDS bullet may take seven or eight or
ten years to strike.

There are several levels of educational effort to be
discussed. The first and most germane to federal policy and
initiatives is aimed at the public at large, a national
educational campaign. There is no need for people to be fearful
if their personal behavior does not put them at risk. If they
knew and fully understood that; our tasks in coping with the
epidemic would ‘be vastly easier for we are draining precious
energies right now trying to contain or react to public panic and
our social values are seriously. threatened by a lack of
compassion in the society’s response to the epidemic to date. I
think there are no more incompatible human emotions that personal
fear and compassion and since we will have unlimited need for the
latter in the days ahead, we must educate the public to alleviate
and eliminate irrational fear.

Second, we must tailor our educational message at the
community level, refining it to capture the special attention of
those who especially need to hear it, those whose behavior puts
them at risk. And finally, we must find ways to penetrate the
finest subdivisions and subcultures of our communities, employing
the language of our intended listeners and enlisting the aid of
their peers to be sure that we have communicated our warnings
effectively. -

It is common practice to invoke a military metaphor
when discussing AIDS policy. I think that is useful to the
extent that it conveys the urgency of the mortal social problen.
Surely the destructive power of the AIDS virus has already earned
it a place high on the list of 20th Century killers of youth.

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Soon there will be more American cases of AIDS, dead and dying,
than there were total deaths in the Vietnam War. But there.is a
hazard in the military metaphor, for people are inclined to
equate all-out response with high technology and the invocation
of education as a primary strategic response sometimes seems puny
compared to a variety of mandatory testing alternatives.

The essence of that war time analogy, however, is that
we must mobilize maximally whatever will work best, and when that
operational criterion is applied, then education is our most
powerful weapon and words are our ammunition. We must be clever
in their deployment. Just as there is no need to offend the
public at large in achieving a general level of information,
there is no sense in speaking to subcultures in a language they
cannot understand. Education for prevention of further spread of
HIV has been the first and dominant response of every other
industrialized country in the world. We are very late at
mobilizing fully in this regard, and we must hurry to embrace the
task with a true sense of urgency. Thank you.

CHAIRMAN WATKINS: Thank you very much, Dr. Osborn.
Ms. Van Ness?

MS. VAN NESS: Good morning. My name is Paula Van
Ness, Director of the Centers for Disease Control’s National AIDS
Information and Education Program. Next month marks my first
anniversary with CDC and prior to that, I led one of the nation’s
largest service and education organizations focusing on AIDS,
AIDS project, Los Angeles. I would like to spend my brief time
here with you sharing some key insights that I have gained on the
local level as well as the federal level and I hope that will
address some of your more pressing concerns.

First, what does the public really know about AIDS?
Over 95 percent of all segments of the general public can tell
you that AIDS is primarily a sexually transmitted disease and a
disease you get by sharing needles. Yet, the public has
thousands of unanswered questions. Each day the National AIDS
Information Hotline and local community organizations answer over
10,000 calls from the general public. Among the most frequently
asked questions are how exactly is AIDS spread during sex, do I
need to get tested, will a test tell me anything, are condoms
effective, is the blood supply safe, and can I get AIDS from .
mosquitoes, sweat, toilet seats, shaking hands, contact sports,
mouth-to-mouth resuscitation. We as a nation have a long way to
go to get very specific answers to questions like these to our
general public.

Now I want to focus on a second issue. Are people
accurately evaluating their own person risk? The answer to that
question today is no. Information collected from interactions
with more than 288 community based organizations has told us that

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fear of casual contact is pronounced in minority communities and
among the young. While many Americans know the facts about AIDS,
they do not believe they know enough or they doubt the
credibility of the information sources on the subject.

Denial is still a major problem among blacks and
Hispanics believing that AIDS is still a white, gay disease, and
there is even denial among gay men. For instance, in one CDC
focus group held with gay men in St. Louis last fall, many said
unprotected anal intercourse is still a social norm in their
community, and even in cities like San Francisco and New York
where aggressive information and education programs have been
instituted, the federal government has a role to play in
reinforcing individuals’ commitments to practice lower risk
behavior. Furthermore, we cannot assume that the gay male
population in this country has been educated, and that our
attention is better placed elsewhere.

Next issue. Is the government’s job done if it can get
all the facts out to those at risk? At the World Health
Organization’s AIDS Summit in London recently, the Danish
representative warned her international colleagues that
information is not education. Achieving behavior change is a
long and difficult process. Those who have worked to change
smoking behavior in the United States know that knowledge of the
danger alone does not change behavior. Catchy slogans, slick
advertising packages cannot be depended upon in and of themselves
to promote behavior change. Nor can the one million brochures
sent out each week from the National Clearinghouse do the job. A
comprehensive program is required.

San Francisco has shown us that effective education
programs require a community-wide commitment, a community-wide
involvement, the use of a variety of communication channels,
political leadership and a community-endorsed social norm that is
realistic and effective. That is a tough laundry list, but San
Francisco has also shown us that it can be done. The goal is to
institute this type of comprehensive approach in cities
nationwide.

Next, the fourth issue. Has the Federal Government
done enough? The quick answer is no. A related question, has it
done a lot? The answer is yes. Since 1983, the Federal
Government has been funding state and local health departments
and community-based AIDS education programs nationwide. In
October of last year, the Federal Government’s America Responds
to AIDS campaign was launched. It is currently the nation’s
second most aired public service campaign, second only to
partnership for a drug-free America.

Public service announcements that discuss condoms,
better communications among sexual partners, AIDS incidence in

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the Hispanic community, community action in the black comnunity,
and the subject of abstinence are now running nationwide. Total
donated television time for the campaign’s first three months
totals over $4 million. The campaign has also produced special
television programs and symposia for physicians and black as well
as leadership forums for blacks, Hispanics, Asians, gays, health
and youth organizations, religious broadcasters and minority
women. The CDC has also cosponsored AIDS education efforts with
colleges, corporations, state governments, local governments,
non-profit and community-based organizations.

As a result of the campaign, calls to the National AIDS
Information line have tripled, and the Federal Government is now
servicing over 68,000 calls per month. We are now in the process
of preparing a national mailing that will go to every home in
America with frank and open discussions about casual contact,
sexual and drug related transmission of the virus and AIDS
prevention.

An important fifth issue, is anything working? Our
campaign is taking place in an environment where there are
hundreds of voices speaking daily to the public about AIDS, often
with contradictory messages. The news media, the religious
community, AIDS service organizations, and even the medical
experts are not in agreement on who is at risk, what constitutes
risky behavior and what prevention behavior we as a nation should
pursue. Determining cause and effect or even obtaining an
agreement on what the desired result should be has been elusive.

 

Unfortunately, we are also doing our job without the
best possible measurement of success or failure, an accurate.
estimate of how fast the virus is spreading. Some city-specific
studies have been completed and some national data indicate that
behavior may be changing. People are reporting fewer sexual
partners, condom sales are up, yet at the same time, CDC is
reporting record rates of sexually transmitted diseases and we
are finding that information on sexual practices and IV drug use
is hard to come by.

I am not a medical expert, but my experience tells me
that if we had the necessary data, we would find large segments
of the population that are not taking necessary AIDS prevention
measures, and that is something we cannot afford to ignore.

A final issue, where do we go from here? We must work
to clear up misconceptions about casual contact among all
segments of the population but more importantly, we must double
our efforts to reach the hardest to reach with AIDS prevention
information: IV drug users and their sexual partners, many of
them members of ethnic minority groups, bisexual and homosexual
men that live in the closet as well as men living in the gay
community who are not protecting themselves; teenagers that are

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on the verge of experimentation or are already involved in sex
and IV drugs; and parents, the primary sex educators for their
children and those who have a powerful influence on our social
norms; and all Americans whose behavior places them at risk of
contracting the AIDS virus.

I promised to share some of my thoughts, but I also
want to leave you with some questions. First, what should the
federal role be in setting social norms for sexual behavior? Can
the government go beyond listing options? Must all
communications list a litany of alternatives that start with
abstinence and end with condoms?

Second, if the government cannot endorse a behavior,
should it restrict the activities of state governments, local
governments, or local organizations that do? Third, what
criteria would the Commission use to evaluate an effective AIDS
information and education program? And, finally, what long term
communication strategies would the Commission support in order to
influence changes in very personal sexual and drug use behaviors?

I believe your answers to these questions will provide
critical direction to our efforts. Thank you.

CHAIRMAN WATKINS: Thank you very much, Ms. Van Ness.
Ms. Mulder?

MS. MULDER: Thank you. You asked me to explain some
of my ideas as far as barriers to effective education. I believe
the Federal Government has a significant opportunity to
encourage, to require, issues that facilitate educational efforts
now and in the future. First, we must require educational
program directors to be qualified and credentialed health
educators from quality training programs. This means that we may
have to identify which are quality training programs, but if we
believe that education is the key to prevention, we may have to
reexamine some of our priorities and untie some of the purse
strings in order to recruit top level professionals. We cannot
afford for public health to be the training ground any longer for
our top level professionals and then allow them to get away from
us and go to private business and private companies.

Second, we need to require professional education for
health care and other professionals so that quality, factual and
consistent information is available in every single community.

We must educate the media at the same time, and we must work
closely with them to make sure that facts are being presented.
This should occur prior to any kind of massive educational
campaign. If we do it second to that, we will get questions from
the public that will not be appropriately answered.

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Third, we must require educational programs to produce.
We must require realistic goals and objectives and those goals
and. objectives must answer some questions. They must answer what
are the problems, why are they a problem, how are we going to
deal with those problems, who is going to deal with them, and
what are the results that we want to see at the end? We cannot
require behavior change in 15 minutes or less and we cannot look
at programs that say they are going to do that and believe that
they are providing us with something realistic. It has to do
more than just sound good.

Fourth, we must require comprehensive school health
education. Local involvement among teachers, students and parent
groups, along with Boards of Education and Superintendents is
necessary and required. The comprehensive school education must
include decision making, values clarification, life style habits
and family life education, and all of this must be incorporated
along with other health issues if we intend to capitalize on our
opportunity to reach the youth in these important years.

Five, we must require networking and collaborative
efforts. We cannot pour money into separate agencies and
organizations without requiring evidence that they are working
with others who have the same or related goals. They must also
eliminate unnecessary duplication and use their dollars more
appropriately to focus on related issues. They should diversify
and do more with less rather than duplicate unnecessarily. They
must form local coalitions that give them access to people with
diverse backgrounds. They must avoid creation of new jobs and
new programs until they have appropriately integrated what we
already have and they must involve target groups in what they
are doing in order to reach each individual group and the
general public appropriately. This networking effort must go
beyond the traditional letters of support. Work plans must
document this effort. Money is not always the answer.

Six, we must avoid a crisis orientation, a
comprehensive integrated approach between public health and
community agencies and organizations working together may indeed
take a little bit longer to get started but in the long run, it
will pay off royally. We must think forward to the future rather
than reacting to a single focused crisis. There will always be
another. We must act appropriately. And, last, we must require
creativity and innovative approaches. We have to put an end to
narrow thinking and cautious approaches and avoid repeating
failures and also marginally effective approaches. We must
update ourselves and our approaches and remember that controversy
is not always bad it is just that we have to know how to deal
with it appropriately. Controversial issues are those that get
noticed, and planned and delivered appropriately, they will get
results. Thank you.

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CHAIRMAN WATKINS: Let me first say that this panel is
the first panel that gets an A for staying within the reasonable
time lines we have asked you to stay within. It is very helpful
to us because we do want to ask a lot of questions, and it helps
uS more to get your concise thoughts and let us go from there.

So I would like to start on my left with our public health expert
on the Commission, Ms. Kristine Gebbie.

MS. GEBBIE: You always make me nervous. It sounds
like you are going to give me another assignment.

CHAIRMAN WATKINS: I am. I am thinking of oné.

MS. GEBBIE: I thank all of you. You did a very nice
job. I think my first question is to Dr. Osborn. From your
perspective in a school of public health and general awareness of
what is being done in health education research and development,
you know that in the minds of a fair riumber of people, health
education is just so much fluff. They look at things like
anti-cigarette campaigns and the continuing use of tobacco or
think of it as eat sprouts and jog a lot and you will be healthy.
Can you comment a little more on the substance that is available
in that discipline to help us in an educational campaign?

DR. OSBORN: I can comment that there is substantial
substance to that discipline. As you know, I am a virologist and
a pediatrician and not a professional in the area of health
education, but at the School of Public Health at the University
of Michigan, we have a collection of some of the most
distinguished faculty in that discipline and I am learning from
them. I think that it is clear, and Paula said some of this very
nicely in her presentation, that if one looks at AIDS education
or health education in general as a series of glitzy
advertisements or a catchy slogan and so on, one gets the kinds
of results that we have become used to thinking of as the
inevitable disappointing outcome of that.

I think that there is lots to be learned about how to
motivate the public to invest their own energies and attention
and their own health, and one of the things that we can turn to
advantage in this dreadful epidemic is some learning
opportunities in both directions, not only can we try with
special vigor because of the urgency to try new and test new and
different modes of health education, but we can learn from what
is happening because we are, in fact, seeing a revolutionary
level of success in health educational messages when those
messages have been even partially delivered to communities at
substantial risk.

I think, and perhaps you have already had this
information brought forward, that it is a stunning fact that in
those communities that are identified as communities, in the gay

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communities in New York and San Francisco where volunteer groups
have worked very, very hard to conduct health education prograns,
the reduction in virus transmission has been dramatically more
than any prior organized health educational effort has ever
yielded so I think we already know from this epidemic that we
have got lots to learn, that it can be learned quickly, and that
this is a very important time, both to try health education
initiatives and to study the efficacy of them because this is
going to be a problem for a while. We have got a chance to back
off and regroup and if we do it very well and learn what it is
that is more effective than prior efforts, we can make a big dent
on things like smoking and some of other factors that contribute
to massive heart disease and smoking mortalities in this country
and elsewhere.

So I think your question suggests that there is lots of
progress to be made in health education. I agree with that, but
I think there are superb professionals involved. Their constant
chorus is: as we move forward in AIDS, we must be evaluating what
we do so that we do not just assume that a give slogan is good
because we think it is good or that something is going to make a
difference because it happens to be impressive on the spur of the
moment; but that we genuinely study better ways to have effective
intervention in the interest of the health of the public.

‘MS. GEBBIE: As follow up to that, can you see the
schools of public health as one of the places that evaluation
could be taking place, and are you getting’ some support to do
that now?

DR. OSBORN: We see that as an exceptionally important
contribution that we could be making to the epidemic. At the
moment, I do not see any suddenly easier mode of support. We are
fortunate, as I say, at the University of Michigan, to have a
group of faculty in that area who are very highly regarded and we
are beginning to try to divert the attention of other
distinguished researchers in our university to this important
area of intervention in the epidemic with some success. But I
think there are ways that that could be stimulated more
effectively. You see, while we have a Department of Health
Bel.avior and Health Education and a discrete faculty, there are a
numkwr of schools of public health where that is not true, and
where it is a little harder to focus the stimulus. I think
there are things that could be done rather modestly in terms of
the overall cost of this epidemic that could propel people into
this area of investigation and endeavor.

MS. GEBBIE: My second question is really one to Ms.
Van Ness and Ms. Mulder. I hear sometimes what almost sound like
contradictory messages of the need for an overall campaign and
the need for a professionally-mounted one, using professionally
prepared health educators, and then also the need for community

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a

unique campaigns and the use of innovation, creative techniques.
In fact, the evidence that we have heard before that Dr. Osborn
just mentioned that self-propelled communities working on their
own have done better than anybody else so far on this epidemic.
How do you fit together that local innovation and effort from
people who have no professional credentials from health education
schools which seems to work with this idea of a highly organized,
highly professionalized, federally mounted campaign. Does that
fit together, and what are the pieces of it that work?

MS. MULDER: I believe, Kris, that essentially we need
to work together on all levels, and I believe this is going to
be most important. Yes, a federal campaign is important, but I
believe that it is also important for the Federal Government to
encourage a lot of local efforts and a lot of local people
working together. I believe that in our local communities as
well as at the state and federal level, we have to launch an
approach that is multi-dimensional. The approach must involve
not only the professional education so that the people are
receiving the right information consistently, and good quality
education, but also that we are launching multi-dimensional
approaches. .

We have a program in the schools, we have a program in
the communities, and in the different communities within
communities. We have programs that reach a lot of different
individuals and organizations so I believe is that a
professionally prepared person needs to direct these efforts.
But I do not believe that you can only have professionally
prepared people because, as you have indicated, there are a lot
of efforts going on that are indeed working. The important
point that I believe we have to remember is that the approaches
that we take must be multi-dimensional. They cannot be single
focused programs. You cannot just do a program in schools and
expect the results that you want to have, and you cannot just do
a program focused at target groups and expect to get the results
that we want, need and require.

 

MS. VAN NESS: I would just add that I think our view
of a national program is that if we do our job, we can actually
come underneath the local programs and help support their work.
And in fact, we can learn from local programs and perhaps try
some strategies and techniques nationwide that have been
discovered at the local level. We can support their efforts, do
things that perhaps cannot be done on a local level, but that
need to be done, and that by working together, in this sense,
duplication of effort should not be seen as a bad thing. It will
take a number of different messengers to deliver messages in
order to get the American public educated about AIDS. We need to
employ a number of different techniques and strategies, and, in
fact, if it takes 14.2 times to hear a message, then we need to
be sure to say it at least 15 times. So in that way, I think

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working together and achieving the coordination that was referred
to earlier is tough, since people do have a sense of turf and
territory. We do have to work together and try to respect that
but also to move forward because this is a crisis and it demands
the best of us.

CHAIRMAN WATKINS: Dr. Lilly?

DR. LILLY: Thank you. Several of you have mentioned
with Mrs. Gebbie that there has been measurable progress in one
respect. In other respects as well, but I wanted to pick up on
the one that, in fact, the evidence for transmission of the virus
within the gay community has suggested that that transmission is
going on at a very much lower level. That we can all be proud
of, everybody in this country, and in particular the gay
community that did this by their own efforts to a very
considerable extent. On the other hand, I was extremely
encouraged that Ms. Van Ness mentioned the continuing need
educate the gay community because in a sense, certainly this
hearing to date, hardly anyone has mentioned the gay community.
It is almost as if the feeling is that the gay community has
taken care of itself. It is fine now. We can totally ignore it.
We can go on to other things.

So I would like a little bit of comment on that
perhaps, and then one more very specific point. If the gay
community has accomplished that, it seems to me that part of that
has been the nature of their approach to the educational message.
Yet the gay community has taken a huge amount of criticism over
the idea that if you are going to try to get people to change
their sexual behavior, then one way to do that, and maybe even
the best way is to eroticize those things which are remaining as
things that are not risky. The gay community has tried that
approach, and I would like to hear your ideas about the
effectiveness of that because it has, from some quarters,
brought a great deal of attack so these are my initial concerns
today.

DR. OSBORN: I would be glad to initiate some comments.
I think the first topic you brought up, Frank, was the one that I
feel very strongly about, and that is the danger of inferring
that because the New York and San Francisco structured and open
gay communities have achieved a level of reduction in
transmission in the virus that we are all excited about, that
that takes care of the gay community in a different sense. We
are using the word "community" in two ways there, in that one
thought, and that is a serious hazard. I think we have learned,
if we did not know, that there is a very substantial fraction of
our population as a country who are gay or bisexual and that they
all deserve to be warned appropriately.

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Many members of that "community" (in that sense) are
covert in their sexual orientation and absolutely not in the
position to even go up and pick up a brochure that is aimed at
The Gay Community with a capital g, capital c; that is a
different sense of the term community and one that we are going
to make a big mistake about if we assume that because of these
localized successes in the optimal circumstances for
communication, that we have now protected a group at very serious
risk of the virus. We have not, and I think that the covertly
homosexual individual in a small midwestern town is probably at
least at as great a risk now as at the beginning of the epidemic
because there is, in fact, reason in that person’s way of living
to avoid receiving messages that are directed to an open target.

It is part of that that I mean when I talk about being
sure that we use national signals and community based signals to
attract the attention of people who cannot openly confess what it
is their risk behavior is. This goes for experimentalists in
drug usage as well. I am proud to say that the state of Michigan
has launched a marvelous educational campaign, and I am even
happier to say that the networks and the TV stations in the state
of Michigan-as soon as they saw the dossier of material that was
available said "Great, we will volunteer time." So we now, in
the state of Michigan, have running a series of marvelously
attention getting ads that are aimed at getting the attention of
people who think they are not at risk.

There is one, for instance of a laid back looking,
rather well dressed, late adolescent young man saying "AIDS is
for druggies. I just shot up once to see what it was like".

Then a voice comes on saying that is probably the most dangerous
time because sharing injection apparatus is what the risk is.
"What you do not know can hurt you. Call this number". And then
there are trained individuals at the other end of that hotline
number who can psych out why the person is calling and what kind
of help is needed.

I think we need to do more of that, perhaps for the
covertly gay community than almost anybody else because the
extent to which their identification with the community is buried
is probably greater than for other people, by virtue of the
societal homophobia they have had to deal with. I think in the
context of the second part of your comment or question, I find it
difficult to reconcile my concept of what this country stands for
in terms of individual worth with the decision to arbitrarily
limit a message of warning about this virus to some framework of
pre-determined behavior that some group is going to determine. I
think we cannot make silence and the punishment that comes with
that the price for unaccepted sexual behavior on the part of some
self-defined authorities.

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I think we must use the language of the intended
listener if we want our listeners to understand us, and I think
that language must be adapted to the groups at risk and the
people at risk who do not see themselves as members of any group.
I find it difficult to reconcile any restriction of that kind; as
I said, words are our ammunition in this war, and to restrict any
of them or to restrict ideas that will best deploy those words
and make them acceptable to the groups we are trying to warn, I
find that very incompatible with my sense of what this country is
about in terms of individual worth .

As I think you know, I had occasion to say so in Senate
Committee testimony and so on, the kinds of things that the Helms
Amendment represented back in the late fall, I think are
antithetical to what it is we need to achieve. We need to be
educating and we must stand by our commitment as a country to the
fact that ideas are free and we must be able to communicate them
in order to build what it is we are trying to stand for as a
society.

MS. MULDER: I would just like to add a statement to
that. I believe that if we continually emphasize a particular
target group, the gay community or the IV drug users or whatever,
what we are encouraging is the attitude in general public, that
"it cannot happen to me". I am not going to get it. I am not at
risk. "I do not practice any risk behaviors". They may not know
what the risk behaviors are and I believe that by focusing very
narrowly upon a particular target group all the time, that we
encourage a false sense of security for the general public. They
then believe that they are not at risk because they are not
practicing one or two of the risk behaviors that they hear so
much about.

DR. LILLY: That is an interesting and important point
I think you just made.

CHAIRMAN WATKINS: Do you have any follow up questions?

DR. LILLY: No, not at the moment.

CHAIRMAN WATKINS: Ms. Pullen?

MS. PULLEN: No questions.

CHAIRMAN WATKINS: Dr. Lee?

DR. LEE: When we first started to organize our work
here, one of the problems was whether to put prevention under
education or whether to put education under prevention and after
many, many discussions, the most fruitful of which was with Roy
Widdus and his staff, we decided to put prevention at the top
because that was the name of the game, and put public health and

169

 

 

 
 

 

education secondarily under that. Now, you all have said many
interesting things. Dr. Osborn, when you used the term the
urgent duty to warn, you used it in a completely different way
than we normally speak of it. I was sort of interested in that.
This panel, I agree, is education as a preventive measure, but
our Commission has to obviously look at all sides of it. Now,
yesterday, we heard some extremely persuasive testimony from Dr.
Vernon and his panel that you are all familiar with. Contact
tracing, I know you, Dr. Osborn, have come down on it a little,
has a certain je ne sais qua with AIDS because if you prevent one
case of AIDS, you are preventing a death, not a venereal disease,
and if you prevent one baby from catching AIDS, you are doing, if
you do not mind my saying so, God’s work. We understand
education is important. How does the Dean of Public Health feel
about public health measures in this disease? We have to look at
this, and we want to hear your side on that particular issue.

DR. OSBORN: I apologize for its lateness, but with the
rules of the New England Journal, the paper that I wrote
addressing much of what you have just asked only appeared two
weeks ago so as I walked in the door, I have provided a copy of
the script that I think you can see in somewhat better developed
form than I can ad lib here how I feel about that. But perhaps
to take the example that you used of what your perception of what
it is I have to say about contact tracing may be a way to work
into the topic.

No, I have no problem with contact tracing. I have a
problem with mandatory contact tracing because I think it is a
contradiction in terms, and I think it leads to behavior that is
antithetical to the goal of prevention of further spread. It
leads to, I think, encouragement of anonymous sexual behavior
because then nobody can be mandatory about what you have to say.
If you do not know who you had sex with, you cannot identify them
later so my concerns about so-called classical public health
approaches are not about the approaches, but about their
mandatory application to a situation in which voluntary, private,
consensual behavior is necessary for further transmission of the
virus.

I think it is time we learned that we cannot legislate
against sexually transmitted diseases. We must use other
strategies to get into the context where sexual transmission of
disease occurs. -I think that we are lined up with the angels, if
you like, in terms of trying very hard through voluntary means,
to encourage people to reduce their number of sexual partners,
preferably to monogamy or chastity in the appropriate
circumstances and age groups. There is nothing different about
these goals, and there is nothing intrinsically different about

some of the mechanisms to achieve them.
\
\

170

 

 

 
 

 

 

It is that concept of "mandatory" that I find to be
antithetical to what we are trying to do. We are trying to get
to the most private part of people’s behaviors and say "Change
those, it is too dangerous now!".Even one new case should be
preventable. We should not have any more transmission tomorrow
if we were doing our job well. As I said in my opening comments,
this is really, in a sense, a kindness on the part of fate or
God, however you like to put it. We have a terrible epidemic; we
have a disastrous new virus; but for the first time in history,
it can be avoided. People who want to can avoid this virus by
personal decision making, and it is sufficiently inefficient as a
transmitting agent that even partial successes in health
education lead to better than we deserve in terms of
interrupting the transmission. I think that is the basic message
coming from the gay community studies; that a partial response to
health education messages gets you a bigger payoff that you even
dared hope for because it is a poor virus. It does not transmit
easily.

But mandatory approaches have already reinforced a bias
I have against that way of trying to deal with private behavior.
We can document, in some states early in the epidemic that when
it looked as if the alternative test sites were going to be
places where confidentiality was not necessarily firm or where
anonymity could not be secured, that all of a sudden there was an
enormous dilution of seropositives by people who were frightened
for poor reasons; and people stayed away in droves who wanted
and needed to know their own serologic status. There has been
enough documentation of that so that it is not idle speculation
on my part that the sense of mandatoriness, the sense of a social
hammer coming down once you have somehow identified yourself as
at risk, is one of our worst public health problems.

We need to have people feeling.capable of being
forthcoming, to learn where they stand and to amend their private
behavior accordingly. We cannot amend it for then,. and I think
that is a social lesson it is way past time we learned: that in
this free society (even in a not so free society) some of the
behaviors that people do not like have been going on since the
beginning of recorded history and before; and what we need to do
is to use education as the way of improving on some of these
public health techniques.

Mandatory contact tracing (by virtue of that
"“mandatory") can drive people to anonymous Sex and away from
counselling. Contact tracing, voluntary contract tracing is a
standard public health technique. It is my understanding that,
to the extent personnel allow, it has been practiced by every
public health group in the country throughout this epidemic as
well as with sexually transmitted diseases clinics; but the
scarcity of personnel does not even allow voluntary contact

tracing. In that sense the issue is a very ugly straw man.

171

 

 
 

 

Everybody wants to have mandatory contact tracing. We cannot
even do our voluntary job because it is understaffed.

DR. LEE: I am very happy to get that clarification for
the record. It is the mandatory aspect that you focus on, and in
that this Commission is in agreement with you. Could I hear from
the other panelists on that?

MS. VAN NESS: I think because this is a hearing on
education, I would like to remind us all that the success of
counselling and testing programs or even contact tracing programs
goes back to a one on one interaction between someone who is
knowledgeable about the AIDS virus and how it is transmitted and
someone who needs to adjust their behavior. In fact, the success
of those programs comes out of getting those two people
together, giving them a chance to talk, to exchange information
so that the person who needs to change his/her behavior will have
a better understanding and receive some support. So that in
actuality with these programs is really marrying education with
those public health measures. They have to go hand in hand and
that the good public health programs that are in place recognize
that and support it. But again, in light of the lack of adequate
staffing, the time pressures and so on, we have not yet even seen
the program be as successful as it might be at its present level,
let alone adding new layers of services on top of that.

And taking it a step beyond what you have said, I would
like to say that at the same time we provide counselling, and
testing services, we must also have comprehensive programs going
on within the community so that the people are touched in all
different ways with different messages. Therefore you are not
only doing one thing or targeting one area, but it is a
comprehensive approach.

DR. LEE: Okay, Admiral Watkins, I just want to make
sure for the record that we appreciate these distinctions because
they are important for our report.

DR. OSBORN: If I could follow through, I picked up on
the contact tracing, but to follow, just reinforce the point that
you have brought out for me, in the paper in the New England
Journal, I bring out a few areas that I think we have neglected.
I think, for instance, that we need to make voluntary testing and
counselling very much more available than it is right now. I do
not think that patient-physician relationships are very sturdy in
a lot of places, and I do not think that somebody who goes to his
physician once every two years and plays golf with him every
Wednesday is likely to say,"by the way, I have had a little
sexual encounter that was bisexual and I want to get tested".
That sort of thing is very unlikely in our present way of
delivering medical care.

172

 

 
 

 

DR. LEE: Happens to me all the time.

DR. OSBORN: Well, I am impressed with your rapport in
that case; but I think that there are ways of making voluntary
testing very much more accessible. I think some of them are
dealt with in terms of some of the legislation that is or is
going to be before the Congress soon. They are dependent on
volunteerism; confidentiality and anonymity as needed in order to
work, and they need to be thoughtful. For instance, it is not
uncommon to have the only "alternative testing site", (so-called)
in a large city and located in the middle of an area where
everybody is afraid to walk; and then there is a several week
waiting period before somebody can get on to the list to be
tested and a several hour waiting period before they get their
blood drawn and then they are told that within a little while,
two to three weeks, they will hear an answer. That is not lined
up directly with the goals that we share for this epidemic.

So, instead of focusing on mandatory this-and-that
which will drain our counselling resources and will cost vastly
more than any prevention component that comes out of it, I think
there are ways of taking those kinds of resources, psyching out
the situation and figuring out ways to bring people who are
genuinely worried into the testing context where they can be
counselled and either reassured and counselled to avoid further
risk behavior or, if they happen to have become infected, ways of
protecting their loved ones. I think these are very important
parts of our response to this epidemic and the word mandatory is
getting in our way.

DR. LEE: Thank you.
CHAIRMAN WATKINS: Dr. Primm?

DR. PRIMM: I think that one area where we are
tremendously lacking is our understanding of sexual behaviors
that are risky whether they be homosexual or heterosexual
behaviors. We do not talk about them, and I was very happy when
you talked about sexual behaviors and our lack of understanding
and knowledge about them. I wonder what is being done by you,
Ms. Mulder and Ms. Van Ness to certainly bring some of these
sexual practices to the fore that could be recognized as being
risky behaviors. I know for me, a man of 59 years of age who has
travelled widely, been a widower for the last 13 or 14 years,
that I thought I was in kindergarten at the advent of AIDS when I
began to learn about some of the sexual behaviors that are
practices, some that I never would have imagined.

The other thing is CDC often uses a reduction in, say,
syphilis among the homosexual men in selected sites to give
credibility to the effectiveness of education. When I look at
this, and I think that is wonderful to see this reduction,

173

 

 
 

 

particularly in syphilis in some of our major cities, I think of
my communities where there is no reduction in syphilis, where
there is a precipitous rise in syphilis and chlamydia and all the
other sexually transmitted disease. I wonder what the CDC is
doing when you talk about a rise in syphilis among heterosexual
population and particularly blacks and Hispanics in certain
areas. What are you doing to focus on that? You need to reach
that population despite the fact that you see an increase in
condom use, etc., etc.

MS. VAN NESS: I would like to go to the first part of
your question first. There is a great deal that we do not know
about sexual practices today in our society as I said before, and
of course, there are different interpretations about what
constitutes risky behavior. To remember that some of the
projections about the impact of this virus on our society were
based on Kinsey results back from 1948 should lead us all to
have some questions about how prevalent homosexual and bisexual
behavior are in our society. In addition to that, what do we
really know about sexual practices within the heterosexual
population? There have been some small scale studies recently
that have indicated that anal intercourse is practiced far more
regularly than people would have imagined. One study even said
as many as 40 percent of heterosexual couples engage in anal
intercourse. That took some people by surprise and it certainly
has an impact on our educational messages as we reach out.

/

There have been some committees that have been looking
at the area of behavioral research and what is needed. The
National Academy of Sciences has a panel now that is working with
the Centers for Disease Control in looking at future directions.
One of the proposals that has come forward and has been dealt
with is to analyze what kind of information we need to collect
about sexual practice today in order to better address the wider
population with educational messages. I think that research is
something that we can look forward to.

In response to the second part of your question,
unfortunately I am the person to answer that because my area of
focus is AIDS only. There are a number of people within the
public health system and at the CDC, in fact, whose role is one
of bringing STD’s and AIDS together through an integrated
approach in terms of sexually transmitted disease clinics and
education programs. I really cannot answer your question, and I
would hope that you can get your question answered from Dr. Cates
or someone whose job it is to really address syphilis. We know
that if we get the message across about AIDS prevention and we
help people change their behavior, it will have an impact on
other sexually transmitted diseases. The evidence is there that
we are not doing our job and that we have a great deal more to
do.

174

 

 
 

 

MS. MULDER: I think your comment about the rise in
sexually transmitted diseases is a concern that I have as well,
not only the rise in sexually transmitted diseases, but also the
lack of success that we have had in the area of teenage
pregnancy. I think that this indicates that our educational
approaches have not been ultimately successful. They have not
really worked, and I think it means that we need to look at new
ways to do this-- new ways of education, new creative and
innovative ideas and we have to be willing to try new things. We
cannot continue to repeat the same kind of a message to the
general public and to people at high risk, that is, of using
condoms or abstaining from sex because it has not worked before
and it will not work with AIDS either.

DR. PRIMM: One more question, Ms. Van Ness, and that
is I think you sometimes leave prevention and education efforts
up to the states, and I think somehow that that is not exactly
what you should do.

For example, in Florida, in Belle Glade, let us take
that specifically. Here is an area that has been visited by
everybody, including CDC many, many times, has sponsored programs
there and I have visited there some, oh, about a month and a half
ago, and went into the neighborhood, looked around and spent
about two hours there. There was not one poster or one
educational tool that I saw in that whole community despite the
fact that this Commission had been there, you had been there, the
National Institute of Drug Abuse was there, Health and Human
Services, of course, sponsors programs there, and not one poster
there. You and I were just in London and we saw all over London
and certainly in Paris and in Geneva, at bus stops and on buses
and illustrations in Norway and Finland where people have very
candid illustrations about what not to do and what to do to avoid
this problen.

Here we have the highest incidence and prevalence in
the community, and we do not have one thing there. CDC sponsors
a program. My concern is why does not CDC, why does not whoever
is responsible for these things, get posters, get materials so
that these communities that are the most severely affected by the
problem, the Harlems of this nation, the south sides of Chicago,
Detroit for example, many areas there can have these materials.

I am concerned about that.

MS. VAN NESS: I share your concern. The tradition at
the Centers for Disease Control has been to work very closely
with state health departments. They, in turn, work with local
health department, they in turn work with their local
communities. That is a rich tradition and there are a lot of
programs and good things that have come out of that. I think
what the AIDS crisis has brought us to is an understanding that
there is much more that can be done to strengthen that system as

175

 

 
 

 

well. Our efforts to work with national organizations that have
affiliates across the country, to work with religious
institutions and educational institutions acknowledges that we
cannot just rely on state health departments and their
relationships to do the whole job. That has been something that
we have been building. Probably in some ways of looking at it we
have come to this understanding rather late in this crisis. It
is very difficult to work with so many constituencies because of
the coordination that is required and the sense that we do not
want some people to undo the good work that others are doing.
There is a balancing act there.

In answering one of your questions about why do we not
see more posters or more evidence of these programs, the easy
answer is there has not been enough money. This is true, but
there are more complicated answers. There is a great deal that
we need to do in terms of sharing information or materials that
are developed in some local areas that others could then
reproduce and use on their own. We have not had the kind of
networking and sharing of information resources that we would
like to see in the future. We have not, at the federal level,
developed the number of materials that we would like to develop
and are developing now. Our program is not yet even a year old
so we are moving as fast as we can but there is a lot yet to be
done. Once we develop materials, we have got to get them out
there. I said before we are sending out a million brochures a
week from the National Clearinghouse, the largest other civilian
clearinghouse in the country is doing that many in a year, and
we are doing it in a week.

There are a lot of materials going out but it is still
not enough. I think in continuing to work with state health
departments, local health departments, national organizations,
religious institution, on and on and on, that we will begin to
see more evidence of this. Keep in mind the scale, you know,
when you have such a large country, the level of effort that it
takes to make things so visible.

If we were in private business and we were going to
launch a new soap product, we would spend about $5 million
testing in test markets how to get the message out about this |
soap. Then we would spend about $50 million rolling it out
across the country in order to get two percent of the market to
buy our soap. What we are talking about is reaching 100 percent
of the American public with basic AIDS information, a lesser
percentage with very specific prevention information, and we are
not spending anything near that amount of money. So we have to
look at it from that perspective.

CHAIRMAN WATKINS: Dr. Walsh?

DR. WALSH: I do not envy you your problem in education
at all because I am certainly discouraged about where we are at

176

 

 
 

 

this stage of the disease. Unless we become too optimistic about
thinking that a smattering of posters or a plethora of posters
all over the buses will make much difference, I think we have to
remember that when the British, the United Kingdom, started their
big campaign a couple of years ago, there was an awareness factor
of 92 percent of the people in the United Kingdom were aware of
AIDS. When they finished, it was 95 percent, and recent reports
that I have read indicate that they have been very discouraged by
the lack of the effectiveness because they are having many of the
same problems we are, the spread in the minorities and that their
education is not reaching people, and I think you raised some
questions to us. I think one of them was whether we felt the
Federal Government should put out behavioral guidelines and I
would hope to heavens never, not in this country. I do not think
the Federal Government should rule on behavior of any kind.

I certainly agree on the mandatory testing. I think
most of the Commission does feel that way, and I do not think Dr.
Vernon in any way was urging mandatory testing. He has been
urging voluntary testing, but more broadly, applied.

I have some confusion on what we can do, and this is
really addressed to you, Dr. Osborn, on behavioral modification
because, aS you say, you cannot change behavior by legal means.
Certainly that does not mean that you want to legalize the use of
intravenous heroin, and yet this is a classic example of where
regardless of the penalty, we are not changing behavior.

Last night, for example, I had to go up to New York
and I spoke to a rather large group of physicians in a city that
is overwhelmed with AIDS.

I do not think it would be a surprise to you, Jim, or
the rest of the panel to find that from the questions I received
from physicians not only how little they knew about AIDS but how
little they knew about what their rights were, obligations or
fears were. When you talk about mandatory or voluntary testing,
they were even afraid to ask their patients about behavioral
patterns in some instances. They were afraid to confront them
and question because they had heard so much in the media and so
much in the press that they may be violating somebody’s civil
rights to even ask them a question that they may end up with a
lawsuit. And, again, I think the task of education is where does
it begin and where does it end and yet we have been wrestling
with AIDS for maybe seven, eight years now. What steps Ms. Van
Ness, have you taken to evaluate your educational procedures? We
have had several witnesses who have literally begged for some
evaluation of education procedures that they are doing even in
their own states, and it would seem to me the CDC would have a
very serious interest and they may have, but I just do not know
about it, but in on-the-table, intense evaluation of why what we

177

 

 
 

 

are doing is not working, before we start off with another group
of ideas that also may not work.

We can guess as to why they are not reaching Hispanics
and why we are not reaching the blacks and so on, but maybe they
know more than we think. We do not really know. We tend not to
replicate the network of the gay community in San Francisco from
the standpoint of education, and I do not think we should delude
ourselves and the nation that behavioral change can be modified
that much through the whole country in all groups. We still do
not know what has happened to the adolescent homosexual as to
whether or not he has been affected by the network education
system. At least I do not know, I have not heard anything about
it but you have raised, I think, many, many questions, all good
ones, and all which demand answers, and I would welcome any
further comments you have on answers because we could ask you
questions for the next two hours.

DR. OSBORN: I am happy to take on some of the sense of
your question. I think one of the things that frustrates me the
most in this epidemic is the occasional comment from somebody
that, well to choose a very pure example of it,"education has not
worked in the drug community so how can you advocate education
when it has not worked in the drug community?" My answer to
that is "how can you know whether it has worked or not when you
have given no options to the people who are caught in that kind
of behavior?" I was thrilled at Admiral Watkins statement as
carried in the New York Times last Thursday, and, in fact, I had
the privilege of spending two days in New York Thursday and
Friday in what could be described as a "show and tell" of the New
York epidemic for a lot of the people involved in it, and then
for a few of us from out of state to try to say what we thought
might be done to cope, and so on, so I had a very heavy two days.

It started with Bob Newman talking about the situation
with drug addicts and you may enjoy what he had to say because
Admiral Watkins’ comments had been carried in that morning’s
newspaper. He got up and he said,"I have a script here and a
talk to give you; but I do not know what to say now. What I
have been saying for 15 years just got said by somebody in
authority on the front page of the New York Times. I feel like a
puppy dog who had been chasing cars all his life and suddenly
caught one?"(which I think is a great phrase) Then he went on to
point that having your endorsement of one of the very most
obvious things to do is only a first step, and that we have to be
every bit as aware of the forces that kept this obvious thing
from happening before as we are of the need for it to happen. I
think that that is a terribly important thing in the context of
drugs, and I think it can be generalized to some of the other
issues that we have at hand.

178

 
 

 

Saying that education has not worked for seven years is
in the same context to me as saying that drug addicts did not die
of anything when we have tried.

DR. WALSH: I did not mean to give that impression. I
do not say we have not worked. We have been struggling with it.
It has worked to some extent of awareness. I was wondering
whether that has worked in behavioral change.

DR. OSBORN: Well, I had the privilege of working with
Dr. Lilly who drafted some of the education section of the
National Academy of Sciences report; he and I also had the
interesting pleasure of working with some very exciting people in
drafting that overall report, and it was interesting to watch
some of what I will call “high tech" friends come around
gradually to the awareness. Now, I ama "high tech" type, too.
I am a virologist and I used to do molecular biological stuff in
the laboratory; but they came around to the awareness that this
is one time when the technology we are interested in is that of
education. Once you have said that, then interesting set of
options comes up. If there is anything our country is good at,
it is selling things, and we have not tried to sell our
education for prevention. I have a one-liner that I use when I
am giving talks. I say,"I do not want the public health people
to seem too greedy about how much effort should go into this
education thing, so I will settle, for starters, for equal time
with the U.S. military recruiting advertisements."

That is a pretty good example. I will bet everybody in
this room could tell you that "Be all that you can be" is the
Slogan of the U.S. Army; we have got to have that level of
awareness of AIDS. It is a new fact of life for our children,
and it is every bit as important to know about AIDS, that it is
not spread by toilet seats and that it is spread by unprotected
anal receptive intercourse and it is probably spread by just a
lot of other forms of sexual intercourse, and that sharing of
intravenous drug injection apparatus is a very dangerous thing to
do. That should be as innate to our children as the meaning of
red, amber and green on a traffic signal; and you do not get that
by a glitzy poster or an occasional TV ad, and you certainly do
not get it by not having that glitzy ‘poster and not having any TV
time. .

I must say I was distressed about a sequence of events
back in September when I was here for another meeting and some
colleagues in the U.S. Public Health Service called and asked if
I could stop down at the Humphrey Building and make a radio spot
for our national educational campaign for AIDS awareness and
prevention month. I had known from Paula Van Ness that there
were great hopes for having at least some kind of a saturation
effect during the month of October with a set of accurate
messages delivered often enough to overwhelm the inaccurate

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messages which are coming from all corners to wit: "Do not pay
any attention, they do not know what they are saying, it
certainly is spread this way, mosquitoes are worth worrying
about" and so forth.

You hear that stuff almost more than you hear the
rather diluted and watered down versions of purified messages
about AIDS so that in fact, if you were a person from Mars coming
in to listen right now, you would probably believe in mosquitoes
more than you would believe in the validated modes of spread and
the inability to spread the virus some other way. Anyway I was
asked to make a radio spot because "we could not afford prime TV
time" in order to get this message across. They asked if I would
mind if they made a video tape at the same time so that in case
some stations wanted to volunteer, it would be available; so we
did that, and to my knowledge, nobody volunteered. But the
experience in Michigan is very intéresting in that regard because
everybody is assuming that when we say we want a national
education campaign, we want to turn the air blue.

We do not want to do that. What I want to do with a
national education campaign is mostly to reassure the vast
majority of the public that: yes, we have got a huge problem
here. It is never going to go away. We are going to need to
know about it like traffic lights; and we are going to need to be
very compassionate because we have got a quarter of a million
young Americans who are going to die! There are 50,0000 families
who are hiding their grief right now, and that is terrible.

I get into enough situations where I hear individual
cases to script a TV show forever. I could go into a different
business because there are awful things happening, and people do
not even dare cry in public. I work with people for days or
weeks on something having to do with AIDS and finally they will
trust me enough to say,"By the way, I have a nephew who is ill
now". "By the way, I have a niece who had a sexual partner who
was bisexual and she now has Pneumocystis". Or somebody will
call me long distance. People are hiding grief at a level that I
do not ever know of in American history, because of public
misplaced fear and because of an ignorant homophobia that we must
overcome. We cannot afford to carry institutionalized prejudices
against a substantial faction of our population and still respond
to a national tragedy.

We have just simply got to grow up enough as a society
to get past that. We have got enough stuff to do that will pull
us together. The only thing new about this epidemic is the
virus! All the problems that we are talking about are old as
the hills so much so that people have given up trying and your
statement about the drug treatment last week is an exciting
example of what can happen if we use the stimulus of this
epidemic properly. We can overcome some entrenched, stalled out,

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tiresome problems that society has decided not to pay any
attention to, by doing a thoughtful job on this one, but when we
talk about AIDS education and whether or not it has worked in the
past, I would contend we have not started trying, not with what
this society knows about to do.

MS. VAN NESS: I could not add a word to that, but I
would like to address the other part of your statement which has
to do with what are we doing in evaluation. We must acknowledge
that we are in the midst of a crisis and it would be really nice
if we could try something today and know tomorrow if it worked or
not. There are a number of longitudinal studies that are going
on, including some demonstration projects that are now in their
third year where some very important information is coming out on
the value of counselling and testing programs, for instance.

We’d like to know if the knowledge of an antibody test
result to someone who is negative have an impact on their
behavior in the same way that we would think it would for someone
who is positive? The results of these studies are coming
together. They are being looked at, they are continuing on, and
the information does need to be shared. There are also
evaluation studies in place on whether or not a video gets
information across. We do a lot of focus group research on
finding out whether or not messages are understood by people. We
test anything that we are putting out in writing to see if it is
understandable. So there is a lot going on. It has just never
been pulled all together in one package. I cannot hand you a
book and say.,, this is AIDS evaluation or an evaluation of AIDS
education. We are doing more to pull it together and one of the
smartest things that has been done recently in my opinion, at the
cpc is to actually have a behavioral scientist in the Office of
the Deputy Director for AIDS who is coordinating the behavioral
research and really trying to help us identify gaps, identify
factors related to behavior and to develop a long term plan.

MS. MULDER: A couple of your points. Behavior change
has been the expected evaluation for health education and so it
has appeared, because it is such a long term commitment that
perhaps we have not been effective. I think we as health
education professionals have to make sure that we base our
evaluation on other things on a step by step approach where
behavior changes that can be proved in five years, eight years,
ten years, yes, they are important-- but there are important
things that we must evaluate before that fact. We all know that
behavior change is dependent upon so many things, and just
sitting down with someone and talking to them about changing
their behavior may or may not work and probably will not. They
go back out into the community, into an environment where it is
going to be a lot more meaningful for chem to continue those
detrimental behaviors. So I think it is again important to
emphasis the comprehensive approach.

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Picking up on your point about where does education
begin and where does it end, I believe we have got to start right
at the beginning and never let it end.

DR. WALSH: Again, I thank you very much. As I say, I
do not envy you. We all are in this area and I was just trying
to be sufficiently provocative to get any germ of any ideas we
could from the panel.

DR. OSBORN: Equal time with the U.S. military.

CHAIRMAN WATKINS: Let me pose the first question to
all of you. It goes something like this--so far we have exposed
what I consider to be significant flaws in the national system in
dealing with just one aspect of this disease, just IV drug abuse.
We have exposed another significant ill on the structure of our
health care delivery. Were we not to have had AIDS at all, we
would have been in very serious trouble in this nation. Witness
the Health and Human Services report of two years ago on
projected health of black and other minorities as it was called,
witness the report from the President’s Commission on Health,
Fitness and Sports, on what the projected health problems of this
nation were going to be in the next century. Witness the
demographic change in the country which is giving us the embryo
of a permanent underclass. How we were going to deal with the
health aspects of that, the limited participation in Head Start,
all of business and academia coming together and saying, my God,
let us get on early adolescent development, let us get on
prenatal programs, let’s reach these children in preschool. Now
we are starting Even Start, a program for poor children and their
parents.

Are we not making a mistake in the fundamental health
education, health promotion of our nation, whether it is in the
work place or in the school, and I would just like to know, if
you would just nod, do you agree, perhaps the HIV epidemic has
exposed it almost more than any other thing in recent times, it
has brought it to a head that we have to do something. If you
agree with that, then you have got to agree that as we move into
dealing with the AIDS-specific education effort, we should in
parallel move aggressively to reinstate something much more
fundamental in the education process in the nation and focus
more heavily on trying to build a baseline of understanding of
our own human biology.

It seems to me that unless we do that we do not have
the repository to deal with what you said was surely going to be
the next event, and we cannot even deal with the last event. We
have got fundamental health problems. We have nutritional
problems, we have teen pregnancy problems, we have the sexually
transmitted disease explosion that we had testimony on yesterday.
We are very concerned about the problems. We have got all the

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other issues that have to be faced to build a lifestyle that is
healthy, and some kind of respect for our own human biology and
perhaps that of our neighbors. It is a baseline from which we
can begin to build something that makes some sense to deal with
this at every level of maturation that we have to deal with,
including the adult society. Would you agree generally with
those comments?

DR. OSBORN: More than generally. I would applaud them
loudly. I think that you just summarized ever so nicely some of
the thinking that went into my decision, for instance, in 1984,
to leave a medical school faculty and become Dean of a School of
Public Health The bad side of it is to say that we need to do
it. The good side is to say that now is an opportunity to bring
together the themes from public health and themes from individual
medicine. Those two fields, I am afraid, spent a lot of energy
fighting each other for a long time, but now I think the idea’s
time has come, and was coming even without AIDS. That is what I
meant before when I said that the only thing new is the virus,
that this will give us a stimulus to readdress some issues that
seem tired or seemed insoluble or were put aside for a variety of
reasons that are historical but not interesting.

We now have an opportunity to try and address the issue
of how individual and public health can merge and be optimized.
I think there is a serious problem in medical education with a
failure to go beyond the individual and beyond the disease
states, and I had the pleasure of saying, to the Council of Deans
of the American Association of Medical Colleges in the fall, that
it is now time for new physicians graduating at least to be
conversant with some of the things that contribute to our teenage
pregnancy epidemic; to be conversant with some of the things that
contribute to that absolutely appalling gap in the health
expectations of some of our minority populations as opposed to
the majority populations; that that needs to be a focus of
concern of physicians, despite the fact that their primary focus
will be on individual health.

By the same token, I think public health needs to learn
to work in a hand-in-hand kind of approach and avoid the
separatism and degree of argument that sometimes led to greater
chasms. Certainly the health care delivery system is the place
where that has to happen the quickest and the best because, as
you have heard when you visited what I have called the
epicenters of this epidemic and as I have had occasion to hear,
we are going to find out very quickly that if our jerry-built
health care system gets broken down, we are not going to be able
to reconstruct it. We have got to move in with some emergency
measures now and think fast and intensively about how to put our
money where our mouth is with respect to the opportunity of our
citizens to enjoy their individual worth and dignity; the health
care system is the place where they enjoy it the least right now.

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CHAIRMAN WATKINS: But you know, there are so many
demonstration projects nationally. You talk about
community-based organization, religious organizations, what they
have really done without any guidance from up here. They had to
face the music in areas to bring a healthy environment to a
difficult neighborhood. The Beethoven Project in Chicago, for
example, Rich’s Academy in Atlanta, people who have really worked
very hard to solve their own local problems. They are not
getting any kind of top level, integrated leadership support at
every level all the way down. It has got to be recognized as a
national issue, and all of those things have to be given more
incentives and moved where they have proven successful. Many,
as you know, have proven very successful in a variety of ways.
Building that healthy environment seems to be a mission of this
Commission, that we could spark that enthusiasm in the nation to
go a step beyond because it subsumes AIDS as well. We heard
some presentations yesterday about how you might package up a
health continuum curriculum concept that would be acceptable to
American society and would not smack of something superficial and
something that is focusing on condoms in the third grade home
room and that sort of thing, but rather a much more fundamental
of our own understanding of our biology. j

I bring it up because it has been a theme that, as! I
sit on the Carnegie Council of Adolescent Development, has a
heavy focus now. These are not health professionals. These are
people very worried about cognitive problems, about light birth
weight. What is happening on disadvantaged children in the
earliest stages of education and how at that time they are
getting turned off. Experts can predict drug abuse by a factor of
three in one child over another child at a very early point.
They have data to prove that so it seems to me that this is one
thing that a Presidential Commission could put a lot of emphasis
on at the same time we are endorsing the AIDS-specific ‘
educational practices that are coming out of CDC and moving into
the local communities.

But, you generally agree with that thrust. Obviously,
you do. Okay. Now, another spin-off from that, because I think
it is important that we find our level, where is the federal
level in the kind of education delivery system that we might have
on ‘AIDS specific issues. Yesterday we heard that effective
educational strategy will have to be allowed to vary from group
to group and city to city and not be imposed from above.

\ What they need from above is all of the baseline of |
information, educational information, technically sound things
that are coming from competent medical and other scientific bases
on which to build their variety of strategies that may well
differ so markedly across the nation. If they are thoughtfully
done, all of them are the right answer. They do not need to be
the same everywhere, and if we try to dictate up here, one, it

184

 

 
 

 

will not work, and two, it is going to continue to add

confusion, throw a lot of dust in the air, when there are so many
good things that the local community-based organizations in
collaboration with business, schools and the workplace and so
forth, can pull together.

So what I have in mind, then, is that information going
to be provided in a way that allows that process then to work at
the local level and where you might say that 15 different results
based on local ethnic interests, local objectives, local mores,
that sort of thing, are quite acceptable, and that we may give
each one an "A" if they do it sensibly for their community. In
other words, is it the information that they need to build that
kind of an educational regimen in almost any community in the
nation, or is it more directive in nature and is it more for
increased information or you might say, how to change behavior in
a certain direction. Could you give me an answer to that, Ms.
Van Ness? ,

MS. VAN NESS: I think that we have to look at the
various tactics that we are using; since they all do fit
together. For example, the mailing that we are talking about,
one piece to go to every household in America is a very difficult
piece to write because of the great variations we have in
peoples’ reading level, their baseline knowledge before reading.
such a piece of material and, their need for information varying
from those people who are not at risk at all to those who engage
in very risky behaviors. I think we should look at the mailing
as just one piece in the overall strategy and continue to work
with state and local health departments, community based
organizations, national organizations, making sure that when
that mailing goes out, there is a support system there to handle
the kinds of concerns and issues and needs that arise.

If we convince people by reading this piece that
testing is something that they should do or they should look
into, we have to make sure that the testing sites have an ability
to serve them. If we prompt people to call the hotline, we need
to make sure that the phone is not busy. I think there are
broader issues about the overall level of support for these
programs. As time goes on and more guidelines are developed and
more materials are developed, we have to be sure that it is not
from the top coming down but really that things. are bubbling up.
Our role is to help those local organizations do the job that
they are there to do.

CHAIRMAN WATKINS: To what extent do you allow
collaboration with people like Ms. Mulder and Dr. Osborn or
others like them in the nation to take a look at your work at
this point to say yes, that is very useful, that will be
beneficial, and that is something we could lean on, then, and
move into other areas of educational need?

185

 

 
 

 

MS. VAN NESS: We do a lot of that. We have brought
together many groups of people in terms of leadership forums and
so on. But going back to the mailing, just as an example,
because that is one that we are working on now, we have convened
a number of different focus groups across the nation to look at
it. Members of the general public including people who are blue
collar workers, married people, teenagers and so on have been
consulted. About 200 professionals who are health educators or
who are working in AIDS or in the public health field have been
contacted to run the material by them to see what their reactions
are, to get their advice and counsel on this project. I think
we are tapping into the resources. There are very rich resources
there. We could do a lot more, but we are always ona fast time
line that we have to respect and there are limits to how far we
can go.

CHAIRMAN WATKINS: There is a question in many people’s
mind about the effectiveness of mailers. I guess that is my
biggest concern, and of how much change they really make in
behavior or in some cases, even knowledge. I am wondering what
is going out with the mailer in the way of other kinds of advice
that might come in from the community based counselling
services, public health and others? How are they coupled into
the process to see that the effectiveness of your mailer is going
to be maximized.

MS. VAN NESS: We would like the mailing to be one
piece of a very large effort surrounded by a number of different
activities and television shows and whatever we can do to
Support that effort. Congress has made the decision that a
mailer is something that should be done. To have realistic
expectations of that mailing is something that I think we all
need to keep in mind. There is a need for some basic
information so if we provide that information, are we doing an
important job.

We have every hope that we will be in a position to do
some pre- and post-assessment of levels of knowledge and even
some self-reports in intended behavior change, but we do not
expect that when someone gets this in the mail, they are going to
read it and say,"oh, I am never going to do that again". There
may be a few people that do that. There may be 50 people in the
nation who learn that anal intercourse is something that is
dangerous and they will no longer engage in that. That would be
hard to measure. We look at the mailing as just one more weapon
in our arsenal that we have got to fight this virus.

CHAIRMAN WATKINS: So you are talking about the
strategy that goes just beyond the mailing, that there will be a
public relations campaign, there will be integration with the
public health officials or others that have to answer local

186

 

 
 

 

questions, local airing on a variety of networks and so forth, to
be talking a lot about it. |

MS. VAN NESS: That is right, and we are hard at work
developing that strategy and talking to people about how we can
work together to create a significant event.

CHAIRMAN WATKINS: Could you write me a letter and tell
me a little bit about that implementing strategy? I am more
interested in that than I'am, I think, the mailer at this point
itself. How you plan implementation because I think that is part
of the national education process that each time we do one of
these things they should not be done by just the technical
professionals. It seems to me that there is a way to engage the
entire American population in something like that if we do it
properly. Ms. Gebbie, do you have a question?

MS. GEBBIE: I think it would be helpful if Ms. Mulder
could comment from her perspective on sort of the reciprocal half
of that. You heard from Ms. Van Ness what cpc has tried to do.

I think there have been some strengths and weaknesses in that,
and Ms. Mulder might be able to comment.

CHAIRMAN WATKINS: Surely.

MS. MULDER: As Ms. Van Ness has veia | tor are
problems with ,a national mailing, and I think a lot of your
comments have ‘brought out some of the weaknesses of that
particular approach. As far as their approach in involving
state health officials and community groups and organizations and
people who ‘are going to be on the recipient end of this, I think
that is where the professional education again comes to the fore.
If we are going to do this mailing, we are not going to make an
impact in many, many places, but we are going to raise questions
and the professionals need to know how to answer those questions
so I think there is a lot of groundwork that needs to be done

first.

I also would like to say that I appreciate your
comments, and I think the Commission has an opportunity here to
require results from these kinds of efforts, from all of us in
education. If you are going to provide us with the money and
the resources to do this, you have the ability to say "T want to
see what good this is doing", and I think we need to do that.

We need to make sure that the good things that are going on in
individual communities throughout the country get disseminated to
other communities so that they can try some of those approaches
that maybe they never thought about.

CHAIRMAN WATKINS: We had a follow up question you
wanted to ask the panel.

187

 

 
 

 

MS. GEBBIE: The issue of public service announcements,
Ms. Van Ness mentioned with I think rightful pride, the amount of
coverage that the AIDS campaign has gotten from PSA’s but in at
least many communities there are serious questions of the
effectiveness of that because of the hours during which PSA’s are
shown but also because of the contrary messages of sexuality that
come through other paid advertising and through the content of
the shows during which the PSA’s are broadcast. Would you
comment just a little bit on that?

MS. VAN NESS: When we are engaged in a public service
campaign, we are essentially at the mercy of the networks and the
local stations to work us into their schedules at times that
fit. Essentially, when they have not been able to sell the time,
PSA’s air, and that is why we see the early Sunday morning and
late night hours. If we could wave the magic wand, we would be
better able to control when PSA’s go on the air and how often
they go on the air. We would be able to target our messages,
like you target the sale of a new soap. We do not have that
ability. So what we do is to try to work with public service
directors to make sure that they will play the messages that we
are delivering to them and to try to help them understand how
they might help us in targeting these messages. There are
deficiencies in this approach, and I think that has been shown in
campaigns that have been studied over the years. There is a good
amount of literature on the subject, and the same problem has
come up for other diseases or other issues. As long as that is
Our approach, then we live with that and we try to make the best
of it.

DR. OSBORN: But I do not think you should
underestimate the power of a sense of national will in helping
the decision making about when public service announcements
appear. I think that our experience in Michigan has been very
exciting that way because it turns out that we have not paid a
penny for TV time or radio time in the Michigan education
campaign because the Michigan Department of Public Health said
"Here, we have got a package of materials that is a diverse
package, it all needs to be presented;" ana they started being
ready to pay for it and the major TV stations in the Detroit area
said, "Oh, well, we will carry that for free. Not to worry". At
which point, the out of state stations said, "We will too". At
which point the radio stations dove in, and my last information
-- I am on the Public Health Advisory Council for the state --
and the last we were presented at our Council meeting, there had
been no money necessary for TV or radio time in that campaign,
only a couple of full page newspaper ads.

I think that the sense of unease and divisiveness on

"is this tasteful?" and "is this national policy?", the failure
to have it validated at the top as something that is important

188

 

 
 

 

for us as a nation to get hold of and learn about has contributed
to a great sense of unease on the part of the networks.

I had the opportunity to testify just in advance of the
three networks’ vice presidents at a hearing that Congressman
Waxman’s subcommittee held, back last spring. Even then, when
the conversation was much newer, what they were basically saying
was if somebody would say this was national priority, we might
say something different from what we are saying now. They are a
very reactive industry. They have to be. Right now, the eddy
currents and the muddled message or lack of message that has been
coming about national will has led to the fact that PSA’s go just
before the sermonette at the end of the wee hours as Mervin
Silverman likes to say.

I think that we might find that it was nowhere near as
expensive to contemplate a blanketing of this message if, in
fact, it were a coherent national will. I think the Commission
has a tremendous opportunity in that sense, and it may not be a
very expensive one. I mean, one of the nicest things we have
been saying this morning is that the most effective weapon we
have got is also in many senses the least expensive.

CHAIRMAN WATKINS: If we are able to do our task, as
directed by, the President, to give him a national strategy, and
if we build it in a consensus building fashion as we tried to do
with hundreds of witnesses, bringing the best in the nation
before us and let the.American public hear all the debate then we
will have done our job and the American people will surely pitch
in. I oversaw the shift to an all-volunteer military from the
draft. It was the best thing we ever did. ‘The volunteer spirit
is very high. We are getting the finest people, a cross section
demographically that we did not have under the draft and so these
are good things for the nation. I think we are going to see the
people who volunteer who are getting burned out and afraid that
perhaps we are not going to put a sustained effort into this, I
think you are going to see them all come back to life. I have
never seen better reporting than on this disease. We have had a
couple of exceptions to that, but basically people are concerned
about it, they are reporting the right things, they are trying to
stay with scientifically valid data but once in a while it slips
away from them, but basically it has been pretty good. The major
networks, the Public Broadcasting System, National Public Radio,
have all been carrying these things for free, and they are ready
to do more. Project Plus are looking for opportunities to help
in this thing.

I know the entertainment community is beginning to look
at their own subliminal suggestions that are really feeding the
fire of AIDS and are trying to eliminate those. That is unusual.
I think the opportunities are now, and I applaud this panel for
the cohesiveness of your presentation this morning. We are going

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TO

to have to move on. We would like very much to keep the dialogue
open with each of you. There will be more questions, perhaps,
from us, coming officially from the Commission. We would like as
rapid a turn around as you can give us so we can factor it into
our thinking and you have an open door to the Commission at any
time from this point on. Thank you very much, and we will shift
to the next panel now.

DR. LEE: Chairman Watkins is locked in deep
discussions out in the hallway, and I thought we might as well
keep going. Dr. Shalwitz, could you start with your
presentation?

DR. SHALWITZ: One million youth drop out of school
every year. The youth unemployment rate is 14 percent which is
2.7 time the rate for adults; 400,000 youngsters are confined to
detention facilities each year; 500,000 to 1.25 million youth
run away from homes every year; there are 300,000 hard core
street youth who survive by any means possible, including
prostitution and dealing drugs, and in a 1986 study, one percent
of high school seniors reported using heroin and 13 percent used
cocaine in the previous year. The number engaging in intravenous
drug use is not known.

The average age of first intercourse for youth in the
United States is approximately 16 years although it may be as low
as 12 in some communities. Only half the sexually active
adolescents use a form of contraceptive at first intercourse. A
third of the adolescent: females use oral contraceptives. Only 10
to 15 percent use condoms.

 

One-third to one-fourth of adolescents have never used
any form of contraception. One million adolescent females
become pregnant each year and that is one in every ten females.
Eight-five percent of these pregnancies are unattended. Thirty
percent who complete their pregnancies are black, and 14 percent
of the adolescent female population is black; 2.5 million
teenagers are diagnosed with sexually transmitted diseases each
year. Chlamydia is the most common STD. Gonorrhea, chlamydia
and PID rates are the highest in young adolescent females,
particularly those who are black and Hispanic.

According to the CDC, as of February 15, there were 226
reported cases of AIDS in youth between 13 and 19 years or age,
that is .42 percent of the total 53,814 cases. Blacks and
Hispanics who make up 12 percent and six per cent of the United
States population, respectively comprised 25 percent and 14
percent of all reported AIDS cases, and 34 percent and 17 percent
of the adolescent AIDS cases. Considering the current practices
of sexual behavior, the prevalence of sexually transmitted
diseases, and drug use, this suggests the future rate of HIV

190

 

 

 
 

 

<<

transmission may exceed its present rate in adolescents,
especially among minority youth.

When considering the incubation period and the great
number of AIDS cases in their 20’s which are approximately 20
percent of the total, adolescents must be considered at high risk
for exposure. So, who are those who are hard to reach? I assume
this Commission means that these are youth who are not reached by
conventional methods of health education, through parents,
schools, religious institutions and youth groups. I believe
successful interventions in this population are entirely
possible. However, education plays only a small role in the
entire prevention picture.

In order to successfully prevent the transmission of
HIV, interventions must be supported by policies and
community-wide understanding. The following elements must be
addressed in order to insure the success of any strategy: public
policy which adequately addresses the goals of AIDS prevention;
plans for addressing community support in education;
identification of high risk groups and their documented needs in
service gaps; untargeted interventions which are effective,
relevant and financially feasible for the focus population.

In all aspects of public policy, youth, health policy
and service delivery experts should be participating in every
level of policy making, including probably the Commission. In
terms of community support in education, there continues to be
substantial misinformation regarding street youth of AIDS. The
notion that street youth are the Huck Finns of the 1980’s
continues to prevail. In order to understand the AIDS risk of
street youth, education must be coupled with information
regarding the broader context of the antecedents and consequences
of youth homelessness and delinquency. Community leaders, media
experts and health officials, with input from youth service
providers and youth must collectively develop and implement a
multi-dimensional AIDS prevention campaign targeting high-risk
youth.

 

Components of the campaign should include media
exposure, community forums, provider education training and
outreach workers. Community-wide education should be targeted to
residents, merchants, community and religious leaders and
legislators who live and work in or represent areas where
homeless youth and other youth congregate. All youth service
administrators and providers including those who work for
probation, social service departments, health and mental health
departments, policy and recreation departments should be educated
as well as all those who work in community-based agencies.

Educational messages should include general issues
regarding those issues of homeless youth, including culture,

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behavior, beliefs and practices, information about risk exposure
and transmission of HIV via sexual practices and drug abuse and
the promotion of the acceptance and use of condoms and clean
needles as a method of disease prevention. There needs to be
increased depiction of minorities, heterosexuals, teenage parents
and their babies and youth at risk and infected with HIV in all
campaigns. Sources for additional information and advice such as
hotlines and newsletter must be disseminated.

Identification of high risk groups. High risk street
youth are not a homogeneous population. There is not one set of
cultural norms or of common language. The problems, therefore,
cannot be addressed adequately by a nationwide effort.
Additionally, resources available to youth vary across the
country. The target group and their needs must be carefully
identified in order to properly plan useful intervention. For
example, many AIDS risk production interventions stress the
avoidance of drug use or encourage access to drug treatment
services yet these services simply do not exist. Methadone
maintenance programs do not accept youngsters who are under the
age of 18 and the drugs of choice of intravenous drug-using
adolescence are cocaine and speed, it is not heroin.

Intervention should not be planned to avoid controversy
or additional identification of needs. However, it is incumbent
upon policy makers and intervention designers to anticipate and
plan for such possible outcomes. It should be expected that AIDS
reduction strategies in high risk youth will increase the demand
for additional resources such as long term and safe housing,
stipend-attached job training programs, residential and
outpatient drug and psychiatric treatment facilities,
multi-service programs providing safe recreational activities and
educational opportunities and crisis intervention services and
respite care.

AIDS prevention, education activities for high risk
youth should ideally have the following components. One,
information conveyed must be accurate, simple, explicit, direct
and non-ambiguous. Two, risk reduction activities and materials
must be compatible with the social norms and values of the youth,
and must be linguistically and culturally appropriate and |
sensitive. Educational aids should be audiovisual or verbal
rather than written. Three, education must incorporate skill
development such as decision making, assertiveness training,
communications skills and self empowerment, and should be
incorporated into a comprehensive family life education program
which addresses all high risk behaviors such as violence,
substance abuse, unprotected intercourse, STD’s.

Four, the acceptance, use and free distribution of a
wide variety of condoms should be promoted widely. Five,
individuals who cannot or will not refrain from intravenous drug

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<<<

use must be taught to avoid sharing needles, how to obtain and
use clean needles, and/or how to clean used needles with bleach
or alcohol. Six, youth must be incorporated into the design and
implementation of prevention activities. Peer counsellors and
outreach workers should be adequately trained and utilized
wherever possible. Seven, staff workers should be well trained
and receive updated information regularly regarding HIV
infections and risk reduction practices. Staff must be
comfortable with the youngsters, with their language and with
their life styles. As much as possible, indigenous individuals
should be utilized in the programs.

Eight, programs must offer a flexible and creative
assortment of alternative methods. Behaviors and options which
achieve the primary goals of eliminating further spread of the
virus. Intervention should be modified according to the site of
activity, whether it is in a restaurant, in a street, ina
multi-service center, in a detention center, in a psychiatric
inpatient unit, etc. Nine, messages must be consistent and
engagingly repetitive. They need to be heard over and over and
over and over again, and humor needs to be used as much as
possible.

Ten, all prevention and intervention activities must be
integrated into a comprehensive, coordinated service delivery
system providing care to youth in general including those at high
risk. Staff should work in concert with the local youth service
providers and in collaboration with other AIDS outreach workers
and service providers in the community. And, eleven, programs
should be regularly evaluated for their effectiveness and meeting
their design goals and objectives and modified according to the
current information and changing needs and/or compositions of
youth at high risk.

 

Since I am running out of time, I would be glad to
answer any questions regarding the specifics of our program and
particularly our obstacles, which the list is longer than those
things that are needed to make the program fit the perspective.

CHAIRMAN WATKINS: Thank you.

DR. LEE: Could I just ask you to be sure to submit
your statement in writing because you had so many good statistics
that we need.

CHAIRMAN WATKINS: Ms. Price?

MS. PRICE: Thank you, Mr. Chairman and Commissioners.
My name is Virginia Price and I am the Clinical Director of The
Bridge, a street outreach and support service agency in Boston,
Massachusetts. I am here today on behalf of the Child Welfare
League of America.

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The Bridge is a multi-service agency responding to
runaway, throwaway, homeless and high risk youth in Boston. Our
services include street outreach counsellors, free medical and
dental services, teen pregnancy and parenting services, drug
abuse treatment and two residential programs. We see
approximately 2,200 young people each year, and we estimate that
another 2,000 adolescents receive services from our workers on
the streets. Our street workers spend 30 of their 40 hours at
night, directly on the streets in the areas where these youth
congregate.

The Bridge clients come from multi-problem families in
which they were often the victims of physical, sexual and
emotional abuse which has left many of them scarred for life.
They have replaced the violence and chaos of their homes with the
violence and the chaos that is endemic to street life. Drug and
alcohol abuse is rampant among them. They have led and they
continue to lead exceedingly sad and traumatic lives.

The story of Kathy is typical. Kathy is a 19-year-old
white female with ARC. She is the middle child of three from a
middle class family. Both of her parents are alcoholics and she
is the victim of violence in her family throughout her childhood.
She is an incest survivor and she has also been sexually abused
as a child outside of her family. She also has a learning
disability. At the age of 13 she became a chronic runaway. She
had a total of six placements in foster homes, and at the age of
15 she became involved in IV drug use. She has been enveloped in
prostitution since her first runaway episode when she was 13 and
she is also the teen parent of two children, the second of whom
was HIV infected.

Because of clients like Kathy, in 1983, our medical
coordinator foresaw that AIDS would pose a major threat to our
clients and began to train herself and staff members about the
disease. Since 1984, we have been offering AIDS education to our

clients. Initially, our clients were very resistant to it
because they perceived it as being a gay disease. What we have
learned over the four years that we have been offering AIDS
education is that AIDS cannot be addressed as a single
educational issue but must be addressed in the context of the
continuum of services that our clients both want and need. We
need to work with these clients, not just to educate them about
AIDS but also to help them to muster the courage to begin to
examine the overall high risk nature of their lives, and to
initiate necessary behavior changes.

In the counselling and the medical components we do
formal AIDS education. We have adapted general educational
materials from the Massachusetts Department of Public Health to
better serve the comprehension level of our clients. In other
words, we have translated mutually monogamous relationships to

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sex with only one person. It is essentially that we be able to
talk to these children in language that they understand and in
non-clinical terms. It is important to understand that our
clients were not sexually abstinent prior to coming to us, and
they are unlikely to be after education. Remember that these
teenagers were probably sexually abused as young children. It is
our goal not to moralize but rather to educate in realistic terms
in order to save lives. Having spent many years working with
these teenagers, I can attest to the need for latitude in being
able to determine individually what works best for each youth.

In order to evaluate our efforts, in the summer of 1987
we conducted a survey of our clients to find out what their level
of knowledge was about AIDS and what impact our educational
efforts had had with them. For our survey, 152 young people
completed our questionnaires. Based upon their responses, we
found that 37 percent of our clients reported that they had
histories either of prostitution or of IV drug use. What we
found was that a higher percentage of those clients reported that
they were at no risk for AIDS than did our overall clientele. We
interpret this as seeing that beyond education, we need to do
clinical work to begin to confront the denials in these youth’s
lives.

They did report that they had made changes in their
behavior; 81 percent of the youth involved in prostitution
reported that they had somehow modified their behavior as a
result of AIDS education. Thirty-four percent reported that they
were practicing safer sex; 25 percent had stopped and 34 percent
reported that they were only going with known tricks which does
not effectively reduce their risk for AIDS.

A similar profile emerges for clients involved with IV
drug use. Eighty-four percent reported that they had changed
their drug use somehow as a result of learning about AIDS; 46
percent had ceased IV drug use; 25 percent reported that they
were cleaning needles, and 17 percent reported that they were not
sharing needles. From this survey, we have learned that our
clients are somewhat more likely to cease IV drug use than to
exit prostitution as a result of our efforts. To date, Bridge
clients who have developed ARC or AIDS have almost all had
histories of both IV drug use and prostitution.

From this survey, we have learned that our clients fall
into four categories after AIDS education. First are youth who
cease their high risk behavior and need ongoing counselling and
support to maintain the changes in their lifestyle. Second are
youth who bargain about what behaviors they will change, and who
need intensive education about the continued risk for HIV
infection. Third are youth who deny that their behavior places
them at risk for HIV infection, and who need a strong clinical
relationship that can pierce their denial system. And, finally,

195

 

 

 
 

 

in the smallest group are youth who use high risk behaviors as a
means to act out underlying issues of anger, depression and
suicide, and who need intensive treatment to begin to dddress
these issues. While this is by far the smallest group, we
believe it is the neediest group.

The funding picture is bleak. Bridge estimates that in
1983, we spent approximately $500 for staff training and
education. In 1988, we are spending between‘ $10,000 and $15,000
on AIDS prevention. However, I would like to make it clear that
this is unique and that we already have a street outreach and a
medical outreach program in place. We estimate that start-up
costs for another program to duplicate our efforts would run in
the range of about $200,000 a year.

On behalf of The Bridge and Child Welfare League, I
would like to’specifically recommend some important actions that
the Commission could take. First of all, we need to have a clear
federal policy on AIDS. We have been getting conflicting
messages from the Administration regarding AIDS, and it is .
essential for community leaders and service providers to receive
a clear and unified message from the government. Of particular
concern are issues related to education of prevention efforts
aimed at children and youth.

Secondly, we need effective education efforts. At this
time this is our only weapon against the spread of the AIDS
virus. Educational materials need to be developed by
professionals who have an expertise in working with the various
populations. We desperately need to continue effective programs,
and to expand and develop new programs to reach populations such
as these youth. What we need is a federal policy like the bill
recently introduced by Congressman AuCoin that respect our
ability as professionals to facilitate attempts to save the lives
of our clients.

Further, we need to recognize the contributing social
problems that lead to there being children living on the streets.
Factors such as child abuse, poverty, poor education, mental
illness, drug abuse, teenage pregnancy and unemployment all act
as contributors to street life. It is no coincidence that HIV
infection is prevalent among populations that have historically
been plagued with other social problems. VY

Finally, we need additional funding. While money alone
will not stop the AIDS epidemic, increased funding from the
federal level is desperately needed in order to support existing
efforts. Prior to the onset of AIDS, child welfare services were
severely underfunded and overburdened. The Commission interim
report is certainly a step in the right direction in its
recognition of this basic reality. Please impress upon the

196

 

 

 
 

EE

President that it is our hope and indeed our responsibility to
tell you what we need in order to effectively do our job.

In conclusion, all of these youth are in need of
ongoing services from agencies such as Bridge to address both the
threat of AIDS and the multiplicity of the other issues in their
lives. To date, in addition to Kathy, seven Bridge clients have
been diagnosed as having either ARC or AIDS. One has died. The
only means to combat this épidemic is a sustained effort in
education, intervention and clinical support. Without this,
youth who have already had extremely traumatic lives will be left
to face an extremely traumatic death. Thank you.

CHAIRMAN WATKINS: Thank you very much. Ms.
Patterson-Bucy?

MS. BUCY: Mr. Chairman and members of the Commission,
good morning. I am June Bucy of the National Network of Runaway
and Youth Services and our agency appreciates the opportunity to
testify before you today. You have heard some figures about
runway and homeless youth. Those figures are estimates. We do
not know how many runaway children there are. We do not know how
many homeless youth there are, and one of the major reasons we do
not know is that we have never tried to find out.

The guesses and estimates range between 1.3 million or
two million homeless and runaway children in our country for some
part of each year. There is no typical runaway or homeless
youth. They are young, the modal age of children coming to
programs is 14. The runaway population is composed of boys and
girls, white children, black children, Hispanic and Asian
children, urban and rural, rich and poor, from every state and
every Congressional district in this nation. It is not a problem
just in big cities, nor do children only go to big cities.
Children who run away from home and who enter the programs which
collect the data that we have, (and we do know a good deal about
children who come to shelters), hardly ever leave their own home
community. They are children who have been forced out of their
homes and who would like to go back. If, after several runs,
they have not been able to be reunited with their family or to
find some satisfactory place to live in their own community, they
may go to a larger city or somewhere else, but that is not the
point of intervention for most young people.

 

We have provided in our written testimony some working
distinctions between runaway and homeless, systems kids, street
kids and missing children, and I will not go into those now. But
I would like to point out that many of these children simply
circulate through our system. Many of the children who
permanently live on the streets have been taken from their homes
most often after an abusive experience or sexual molestation in
this home. They have been moved from foster care to foster care

197

 

 

 
 

 

to substantive care to something else and something else.
Finally, the children decide this is getting them nowhere. They
run away from the system. No one looks for them, but they are
there on the streets.

Perhaps the most important thing to remember about
these children is we do know where they are. Not all of then,
and we do not know how many there are, but we do not have to look
them up to find them, nor do we have to invent programs. There
are good programs like the Bridge which Ginny told you about, and
Youth Advocates, where Dr. Shalwitz often works. And we do know
what to do with these young people. Our problem is we have no
national will to do it.

Many of these children have been forced from their
homes by families that are often very dysfunctional. A boy is
asked to leave because the family resources are inadequate to
care for him. Food is scarce and he eats too much. Another
because a parent cannot accept a son who thinks perhaps he is gay
or others because parents cannot handle an acting out or
depressed adolescent. In the majority of cases, the young people
are running away from something. They rarely run to anything, or
have any conception at all of where they are going or what will
happen when they get there. They are running from painful
situations and they often encounter more serious problems and
more violence on the streets.

Homeless and street youth face unique barriers which
prevent their receiving effective AIDS education or prevention
techniques. We should, however, realize that the programs that
have worked out systems of dealing with these young people have
had good success as Ginny has just told you, but we need the
collective will to provide more programs and to meet those
children where they need to be met. The barriers to providing
effective AIDS education and prevention for runaway, homeless and
street youth are formidable, not the least of which is in
treating the symptom. The temptation may be to ignore the root
problem. We must give food, shelter and education to children,
but should not we also ask why are hundreds of thousands of young
people living on our streets homeless without any supervision or
care from adults? We must take this long term approach or we
will simply be creating other children who will be victims of
AIDS as well as never having a chance to be productive citizens
in our society.

Effective strategies do exist. Some are already in
place. Others are in the process of being developed. New
strategies need to be funded and present once expanded. The
National Network is the primary service agency which works with
homeless and runaway youth programs, and we have recently
inaugurated through a grant from the Center for Disease Control
an AIDS education and prevention project called Safe Choices.

198

 

 

 
 

 

Features of this project will be incorporated into my
discussion.

The first thing we need to do is reconnect those young
people to their families and to their communities. Doing so will
make it easier to link them with medical and educational
services. I think there are two really, really bad things
that happen to young people on the streets that most of us who
are not familiar with the children do not think of. One is they
are completely disconnected from medical care, and the other,
they are almost completely disconnected from educational
services. Bad things happen to kids on the street, but along
with that are the good things that do not happen. There are
access to services that children, and all of us, need. Our
reconnection strategy must be comprehensive with the positive,
supportive relationship of caring adults. Youth on the streets,
particularly if they are to get off of the streets and if they
are to change their behavior, need to feel they belong to someone
and to something. Their low self-esteem and their
self-discipline must be built up.

I remember the story of a street worker who was
beginning work on the street and going out where the kids are and
the first night she was there, it was almost overwhelming, the
swirling people, the noise, the confusion, the suffering young
people. She grasped the arm of the person who was helping her
learn and said, how do you start? A very wise answer came and
that was, "learn their names". In an anonymous world of uncaring
strangers, to be called by your own name is again to be linked
with a human family, and this is the first step of empowerment
and the ability for young people to begin to control their
behavior. Reaching out to troubled youth implies a commitment to
serve the youth where they are, both physically and
psychologically in language they understand, with methods adapted
to their levels and types of learning.

Runaway and homeless youth are on the move. They are
on the street, they live in shelters, they eat at fast food
restaurants or out of dumpsters. They hang out in video arcades
or other places on the street. To be successful, our prevention
activities and information must reach them where they are, in
language that is clear, direct and concise. We must provide
current scientific information that is constantly repeated, then
reinforced by staff at every level in ways that conform to the
vocabulary, age and lifestyle of the youth. But correct medical
information is not enough. Prevention and behavior control must
be stressed, again and again.

Prevention education must be skill based. Providing
information is not sufficient. Saying no may be the goal, and it
is important, but it is not enough. A skill-based curriculum
must teach young people how to practice saying no, how to

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withstand the pressures from their peers, so that abstinence can
become a reality rather than just an impossible ideal.
Counselling in the use of condoms must be coupled with
information on where to buy them or get them, how to use then,
and their limitations. All drug use which clouds the thinking
processes must be discouraged and must be seen as dangerous for
young people.

AIDS prevention education, therefore, must reinforce
the necessity of altering and modifying high risk behaviors. It
cannot do so through penalties and censorious language but by
persuasive arguments, devoid of judgment, or judgmental
attitudes, which clearly point out the consequences of high risk
behavior. In doing so, our education must endeavor to stress the
fact that seems to get overlooked sometimes in our rush to preach
about the deadliness of AIDS. That is the truth that sex is
good, that it is a gift of God to young people, that human
sexuality is a positive force. The AIDS epidemic could lead us
to be sexually responsible, help us to choose life while we are
preventing the spread of the disease and help young people be
emotionally and psychologically more healthy.

For youth who do contract AIDS or ARC, our training
must somehow help them confront their mortality, and to come to
terms with living out in dignity and acceptance the time that
they have left. Coming to terms with the issues of death and
dying, however, applies not only to the youth, but to adults who
work with them. Adults must be trained to identify their own
values and feelings in these difficult areas. Adults in runaway
Shelters often feel deep anger, great discouragement, confusion.
Why do we let this happen to our children in our open and caring
society?

To help them admit and channel that anger into
constructive ways can enhance the effectiveness of counsellors
with youth and prevent their burn-out. It can reinforce the
message that there are positive ways to deal with this
potentially destructive feeling. Programs must also adopt
corporate policies that will enable them to act with safety and
confidence with their young people and with their employees.

Throughout, there has been an insistence on presenting
AIDS education in the language of facts, but in communicating our
message to youth, the language of facts is not enough. Our
language must also be sensitive and compassionate. This
sensitivity extends not only to the words we use, but to the
music behind the words. If we truly wish to reach out to runaway
and homeless youth, we must leave the safe confines of our
language and our world, and risk entering the world of youth who
need not severe judgments but our compassion. Compassion is not
pity, it is an honest attempt to enter the world of pain and both
empathize and sympathize with the plight of others. The language

200

 

 
 

 

of compassion is ultimately the language of hope, and if there is
one message that will help runaway and homeless young people turn
about and change their behavior, it is that message of hope. The
challenge that we face in reaching the thousands of hard to reach
and homeless youth with facts about AIDS is to educate the youth
effectively for their own empowerment. It is to tell them
lovingly yet unequivocably, you do have a choice, and your
decision with our help lies in your hands. If we have the
national will to make the needs of these homeless children a
priority, their potential will be redeemed and their future and
our own will be immeasurably enriched.

CHAIRMAN WATKINS: Thank you very much. Ms. Johnson?

MS. JOHNSON: Admiral Watkins and distinguished members
of the Commission, I am pleased to have this opportunity to
appear before you today on behalf of the Children’s Defense Fund
to discuss the complex problems faced by low income and minority
youth across the country who face high risk of HIV infection. We
share your concern for youth at risk and hope that the issues
raised by this panel and others today will receive your continued
interest and commitment to action on behalf of these children.

The Children’s Defense Fund is a non-profit
organization which exists to provide a strong and effective voice
for the children of America, and we work to improve conditions
today so that all of our children can be productive an effective
members of our society tomorrow. National statistics tell us
that there is much work that remains to be done on behalf of
children and families. You have heard a lot about the children
who are at risk today. I would like to talk a little bit about
some of the children who are at risk tomorrow.

The first high school graduating class of the 21st
Century will enter first grade in September of this year. These
preschoolers are the future leaders, workers, taxpayers, soldiers
and American hope of the 2ist Century. Many of them are off toa
healthy start, but millions of them are not. Today, one in four
is poor, one in five is in risk of becoming a teen parent, one in
six have no health insurance, and one in seven is at risk for
dropping out of school.

Our society is aging, and the number of children and
the percentage of youth in relation to other population age
groups is declining. Now is the time to invest in our future.

If current trends continue, a disproportionate number of our
young will grow up poor, undereducated, and untrained at the very
time that our society will need then most. Moreover, as a result
of growing health risks, too many of our children will be lost to
preventable death and disability. My written testimony addresses
the excess health risk of HIV infection faced by low income and
minority children, the health status indicators which point to

201

 

 

 
 

 

the depth and breadth of risks which are faced by black and
Hispanic children, and the lack of access to health care services
that exacerbate the risk for poor children whether at birth or
throughout their childhood. I would like to use most of my time
today to discuss the essential steps for preventive investment
strategy for children. Whether it is new statistics for
epidemiological studies, results on research of the virus itself
and its transmission or anecdotal studies about the lives of
those infected with HIV or sick with AIDS, new facts about the
spread of HIV infection appear daily.

The growing body of evidence points to some very
troubling trends. Among the most troubling of these trends is
the growth in the number of young children with the HIV
infection. We know that children from families living in poor,
urban, minority communities are facing a greater risk of exposure
to HIV than other children and that exposure includes increased
risk of sexual assaults and victimization, of contact with
contaminated needles or persons who have used them, and birth to
an HIV infected mother or father. As with poor and minority
children, poor and minority women of child bearing age are more
likely to live in a community with a high incidence of HIV
infection, and the statistics that are available to us indicate
that the risk of HIV infection among minority youth also is high.

We know that the early cases of AIDS among adolescents
were primarily reported among children with hemophilia, and that
the screening of blood and blood supply products means that now
the risk of transmission through sexual activity and HIV and IV
drug abuse is a larger threat to the health of teens. The risk
of HIV infection while existing for teens is a much lesser threat
than the risk through sexual activity. We know that just in
terms of heterosexual activity and sexually transmitted diseases,
our statistics indicate some significant risks for HIV infection.
An estimate 83 percent of males and 74 percent of females are
sexually active by age 20. Among young women age 15 to 19, 45
percent of whites, and 59 percent of blacks are sexually active.
Among Hispanic women age 15 to 19 of any race, 47 percent are
reported to be sexually active and sexually active teens have the
highest reported rates for sexually transmitted diseases of any
age group.

In 1986, reported cases of gonorrhea totalled over
8,000 among 10 to 14 year olds and nearly 216,000 among 15 to 19
year olds. in that year, reported cases of syphilis included 155
cases among 10 to 14 year olds and over 3,000 cases among 15 to
19 year olds. It has been estimated that one out of every 17
currently has a sexually transmitted disease. We know that
exposure to HIV infection compounds the health risks already
faced by low income and minority women and children. The
financial and racial barriers to access to health care have left

202

 

 

 
 

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low income and minority women and children in reduced health
status.

The volumes of the report of the Secretary’s Task Force
on Black and Minority Health describe in detail many of the
disproportionate health risks faced by members of the community.
Two recent publications by CDF address the health risks faced by
low income and minority children and pregnant women. Financial
barriers to health care have grown in recent years, in part
because more individuals and families lack access to health care
coverage and the availability of public health services eroded in
the first half of this decade as the number of poor and uninsured
children increased.

There are four essential governmental responses that I
wanted to address today. First, there are three key reasons we
must invest in basic public health services that are essential to
the prevention of HIV infection. One reason is that they provide
a base for information training and screening activities.

Second, public health programs already serve millions of poor and
minority women and children and are identified with disease
prevention. Third, public health programs serve as a source of
information on the pace of the epidemic. Screening for HIV
infection in health centers and sexually transmitted disease
clinics and high risk communities can increase our understanding
of this problen.

 

Second, we must use schools creatively in the fight
against AIDS. Schools are an important public institution which
can provide essential health and family life education to prevent
the spread of HIV. While many of the youth at greatest risk have
left school, the time for prevention of further dropout and high
risk behavior is now. Youths who by age 18 have the weakest
reading and math skills compared to those with above-average
skills are nine times more likely to drop out of school, eight
times more likely to have children while young and unmarried and
face a host of other risks, and we know that regardless of race,
youths from poor families are three to four times more likely to
drop out of school than those from affluent households.
Furthermore, one in five poor teens with lower than average basic
skills is a mother, regardless of race or ethnicity.

Third, we must design health education programs to
reach high risk adolescents in and out of school. For teens who
are in school, communities across the nation must adopt programs
which incorporate health and family life education into the basic
curriculum. The objective for the nation’s health state that by
1990 every junior and senior high school student in the United
States should receive accurate, timely education about sexually
transmitted diseases. What could be more timely than a
curriculum which provides information about sexual activity, its

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risks, the risk of HIV infection and other sexually transmitted
diseases.

For teens who are out of school, new and existing
community based systems must be used to provide education about
the risk of HIV infection. For low income and minority youth,
individuals and institutions with a connection to the comnunity,
may most effectively communicate such information. It struck me
earlier, during the first panel, that a more simply way to put
what I have written in my testimony is that it is not just the
message but the messenger.

Fourth, we must invest in basic programs designed to
keep children health and productive and to encourage delay of
sexual activity. We already know a great deal about how to help
children and their families. Children need care and attention
not only from their families, but from the society as a whole.
Preventive investment in our children is essential to the
prevention of HIV infection. The successive programs to improve
access to health care among poor families has been documented.
The federal Chapter One and Head Start programs, both designed to
enhance the skills of disadvantaged children have demonstrated
success in building basic skills and improving the chances that
children stay in school.

Child welfare programs designed to meet the needs of
abused children have demonstrated success and yet the tattered
patchwork of programs that we have does not nearly meet the needs
of coverage for those children, and we know that an increasing
number of families and children on their own across America do
not have homes. In a recent report, the Committee for Economic
Development stated in this way the national self interest in
investing in children. This nation cannot continue to compete
and prosper in a global arena. When more than one-fifth of our
children live in poverty and one-third grow up in ignorance. If
we, aS a nation, cannot compete, it cannot lead. If we continue
to squander the talents of millions of our children, American
will become a nation limited of human potential. It will become
tragic if we allow this to happen. America must become a land of
opportunity for every child. The HIV epidemic brings an
additional burden to this challenge I believe. ‘If we allow more
children to become infected with the HIV virus and suffer the
pain, debilitation, and death that so often results, we will not
only have failed these children, but cause irredeemable national
harm as well.

CHAIRMAN WATKINS: You have given us a very sobering
picture. You have also just made me destroy the draft of my
speech to the Children’s Defense Fund Convention next week so I
will have to go back to the drawing board and try something else.
I would like to commence the questioning on my right with Dr.
Primm.

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MR. PRIMM: First, I would like to compliment Ms.
Johnson on highlighting and bringing to the fore the plight of
minority youngsters in this country, and the kind of very fertile
area in which they live and have to survive that make them more
susceptible to HIV. I think along with what you have said goes
something else that I think is a contributory factor and that is ‘
the stress around them that further makes their immune systems
more vulnerable to infection with the virus. I need not say much
more from my perspective because your report covered pretty much
what I would like to say about it so I will pass Mr. Chairman.

CHAIRMAN WATKINS: Dr. Crenshaw?

DR. CRENSHAW: I, too, want to thank you for bringing
this information and data to our attention. I want to tell you
that I think what you are dealing with in our children even
though it is the wholeness, it represents all our children and is
at the heart of the ultimate threat of this AIDS infection
because our adolescent kids are the ultimate high risk group.
What really concerns me is that if I understood your statistics
correctly that about 200 or thereabouts have been diagnosed with
AIDS, and that there, I could not hear you very well, was it 2.5
million STD’s. sexually transmitted diseases, among teenagers.
The sexually transmitted diseases that are already present and
the one in seven who has a sexually transmitted disease and then
the one in five at risk for teenage pregnancy certainly
demonstrates the potential for the spread of any sexually
transmitted disease among our teens.

I hear public health departments and people say well,
200 is a small number, but I will never forget when there were
less than 200 in the gay community only seven or eight years ago;
and I would dread to see history repeat itself, and I think the
gay effort will have lost impact if we do not make use of it and
learn and apply their suffering and their tragedy to the rest of
society. What I want to ask you, and this is something that I
have struggled with and I have not come up with solutions,
every panel or witness that has talked to us about adolescents or
teens or sexually transmitted diseases is so relieved and
grateful that someone is listening. They are having such a hard
time getting the attention of the community at large. What can
we do? We cannot allow this to continue. And where are the
obstacles in waking up the world? They care about children. How
can we reach better and get the resources that we need?

MS. BUCY: That has certainly been a frustrating
experience for us. Programs alerted the National Network three
and a half years ago that they were finding kids who were
seropositive within their populations with whom they were
working. We tried to get the word out. We went from federal
agency to federal agency, we went to private foundations, we went
to insurance companies. Almost universally the response was,

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"oh, I never thought of that". I might say not only did these
children reinfect each other, but kids who are living on the
street and prostituting are being prostituted by people who come
from the community of "nice" people, the community that thinks it
is protected. When men come down and prostitute little boys or
young girls who are diseased, they can take that infection back
to their families.

DR. CRENSHAW: And not only that, I might add that
these kids, while they are in foster homes and going through the
transition of getting to the street and in between prostitution
and drug use, are going to school periodically and are
interacting with the community that thinks they are safe and
separate.

MS. BUCY: One of the things that concerns all of us a
great deal is that we know the populations of people who have
been identified as most likely to be at risk of AIDS have often
been scapegoated. They have almost been threatened and pushed
aside in our community. We do not want that to happen to young
people, even, and most particularly to those young people who
have no protection, and no attorney to defend their civil rights.
Although I feel that we have tried to draw attention to these
problems youth have, we really do not want our high risk young
people to be scapegoated. We prefer to think of high risk
behaviors, in whatever we do. An article in Psychology Today
spoke of high risk of AIDS in children who are living on the
streets, particularly in New York. That is rare, but we feel
also that it is important to protect those children from the kind
of fright and the pushing aside of homeless children particularly
minority children as this epidemic gains speed.

DR. CRENSHAW: So what can we do to help and where can
we apply the pressure and the heat to get you the kind of
resources that you need to help all of us protect our kids?

DR. SHALWITZ: For one thing, I do not want to dwell on
the problems because we could be here all day, but services to
youngsters are incredibly fractionated. There is not a
comprehensive approach, and as you all know, when you feel sick
or not even when you feel sick. Let us say you start off in the
morning and your car breaks down and you get a headache and you
get a stomach ache, you are late to work, you get in trouble,
etc., it is like your whole body travels together in time and
place, and you know how important your housing is and how
important your medical care is and how important your whole body
needs packaging.

Youth are so again fragmented and there is one approach
in the Federal Government called Youth 2000 that is being
spearheaded by Secretary Bennett and others in which there is an
effort to look at how to develop comprehensive policies and

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procedures in terms of approaching the issues of youngsters.
There is a pittance allocated to it, but it does encourage people
to comprehensively address the issues of adolescent substance
abuse, adolescent pregnancy prevention, housing, and education,
and these kind of efforts need to be supported from other places
such as yourselves and also need to be encouraged to address the
issues of adolescent health and sexually transmitted disease and
pregnancy prevention. It also has to be coupled with all high
risk behaviors and AIDS prevention which should be incorporated
into all these strategies. Again, it is just a pittance of
money. The whole federal effort maybe is $450,000 but that is a
start.

Your recognition and acknowledgment that youth are at
risk and need our attention is something that is of vital
significance and just mention them as one youth, one at-risk
group but they are a special group that requires all of our
attention and concern. These people, the people who we work with
and we serve have no political clout, have no money, have no
machine in place to rise to the effort. In San Francisco, where
so many wonderful, wonderful things are going on, there is barely
any attention to homeless youths or high-risk youth. We get
almost no AIDS money. None.

DR. CRENSHAW: They have you which is very fortunate,
and I could talk to you all day, but it would not be polite, and
I am sure that there are many others interested, but since it is
lunch, perhaps after the panel is over, I could chat with you a
little further. Okay?

CHAIRMAN WATKINS: Ms. Gebbie?

MS. GEBBIE: I am wanting to leave aside a little bit
the whole prevention piece about which you have all been very
articulate but I think that is something that deserves a great
deal of attention, and focus on that body of kids that are out
there now for whom primary prevention did not work, and they are
not in school.

The education grants that come out from CDC for youth
education all say kids in school and then kids not in school as a
second group, and all of the groups that have received money for
that are expected to reach both kinds of kids. That implies, and
in fact, overtly states, that somehow you could do AIDS education
with these kids not in school almost as a freestanding effort.
The more I listen to you four, and put that in the context of
other things I know, the more I am impressed that trying to do
AIDS education with kids who are not currently in school as a
freestanding activity is almost futile, that it would have no
meaning were it not in the context of a more comprehensive
package of health or education or support services. Yet, that
almost sounds like we cannot do anything if we do not do

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everything which is a very difficult approach to take to any
problem. I would appreciate some discussion or clarification on
that issue.

MS. PRICE: I do not believe that we have to do
everything for every kid. Unless we have services the kids want
and need, we cannot do the education. We cannot go out on the
streets with the sole purpose of providing AIDS education to
kids. We need to have food. We can sit down at a meal with them
and talk with them about AIDS. We need to have food, clothing,
showers, a place to stay, the possibility of employment. These
are the things which are attractive to the kids. It is not that
we have to address every one of these issues in order to do AIDS
education, but if we do not have something to help these kids,
they will simply walk away from us. Now, if we go out in the
streets and say to them, I want to talk to you about AIDS, and
that is all that I have to offer to them, they are not going to
relate to me at all.

MS. GEBBIE: But to have at least one of those other
things that they need, do you think it might be effective?

MS. PRICE: I think you have to hook it to a number of
different things that they need. You cannot just say that they
need food, they need shelter, they need medical care. Our
strategy has been to have comprehensive set of services that are
available to kids and then to integrate AIDS education'into each
component of our program. Some kids come in and all they use is
the dental service but as part of the evaluation that is done
with them, somebody would talk to them about AIDS. or they may
come in just to get a place to stay that night, but again we
make the effort to talk to them about it. So it is having a
range of services available but not necessarily expecting that
all kids are going to utilize all of these services and change
their lives.

MS. GEBBIE: Thank you. That was helpful. Did you
have a comment about something?

DR. SHALWITZ: I just wanted to add that another thing
kids in the street really benefit from is just contact, friendly
contact, and the AIDS workers who are in the street with the
kids, hang out, they spend their time hanging out, engaging
casual conversation, just shooting the crap with the kids.
Basically, they start exchanging this kind of information, start
doing risk assessment, STD risk assessment and suddenly the
condoms come out and the bleach comes out, and tables get set up
and there is lots of distribution. Again it must be people who
are trusted, who are considered to be friendly folks out on the
street and who mind and respect the rules of their territory and
do not come out there preaching. It just simply will not work,

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but again it can be imparted with the right folks out there, and
with the right training, with the right heart.

MS. BUCY: I think I would like to say that there is a
piece of legislation called the Runaway and Homeless Youth Act
and that legislation funds programs, 311 this year. The money
goes directly to community based programs. It does not go
through any kind of state planning or it is not in the control of
anyone except the federal authorities who administer that
program. These programs have been in place for the last 20
years, a growing number all along. They have had investigations
by the General Accounting Office, and by the Inspector General’s
Office who have come back invariably with reports saying these
agencies do what they were intended to do: they do get kids off
the street, they do have more self-referred children than
children who ever leave them without permission. They are open,
caring programs. The kids know about them and communities
approve of the programs. The efforts that we can make,
particularly for the runaway and homeless youth, do not have to
be freestanding in the sense that there is nothing out there now.

There are some really good things going on in all of
the major cities and in many, many small communities, but the
money that comes from the Federal Government is about a third of
the money that these programs have, and every program that I know
is absolutely strapped for money, for staff, for the ability to
do what they know they can do, what children like, what children
come for, what changes their lives. It is ridiculous that we
know how to do things and we simply cannot get ourselves
together. The total amount of money put into the programs by the
Federal Government is $26 million, which is just pennies for each
of the children who come to the program, much less for those who
do not get there.

 

It seems to me that one of the things we need to do in
this country is to decide to whom homeless children belong. Our
child welfare, our child protective systems, do not do well with
adolescents. They try to do permanency planning for their living
situation. Permanency planning for a drug abusing 15,
16-year-old kid is just not going to happen. The child
protective system has proved over and over again that they are
overwhelmed when they try to deal with a high risk teenager. As a
nation, however, we have no policy; we have no notion at all who
is responsible for homeless children. Our schools can kick them
out when they start skipping school or do not do well in school.
The court system can put children in some sort of secure
detention only if enough good police work has been done and if
their crimes are detected. Families can just reject children,
and there is no penalty whatsoever. Local government has no
responsibility that is assigned by anybody for those children. I
do not think we are going to get anywhere with homeless young
people in this country until we recognize that they are there and

209

 

 
 

 

have somebody responsible for these very troubled children. We
have not done that. Young people cannot go to adult shelters
because the adult shelters do not have the license for taking
care of minors. If they are not with their families, they simply
cannot get into adult shelters, and there are no systems of
homeless shelters for adolescents in this country so they are
excluded for what few services there are for homeless people.

Many times if adolescents are with their parents and
the parent, usually a mother, wants to go into a shelter, they do
not let the older children in, particularly older boys, fearing
that they will be destructive, or frighten others. I still
think the fact that kids eat an awful lot discourages people from
wanting them in their programs. They are disruptive and they
are not allowed in. And these kids do not hang around. My
church does feeding of street people here in Washington. You
rarely see a young person waiting in line. They do not have to
slouch on street corners and wait until somebody comes by to feed
them. They get out there and hustle, but their hustling is
destructive. I think we are very, very foolish if we do not use
those agencies that we already have in place to reach out to more
of those children with some kind of responsibility and capacity,
some kind of opportunity for them to have a longer term place to
live and the opportunity to get enough education to be
productive citizens.

MS. GEBBIE: My second question is related to the issue
of the barrier to making those things happen. Clearly, part of
it is financing. I take it, from what you have said, that there
is a network of centers and concerned people who are feeling very
short of funds. We have experienced in other situations that a
checkbook is not always the answer, and I think it would be
helpful if you would, perhaps each of you concisely state, what
you think is the biggest other barrier if the money barrier were
not there. What is the biggest other barrier to dealing
effectively with these hard to reach kids?

MS. JOHNSON: I will take the first stab while they are
formulating their more program-specific responses. It seems to
me that it gets back to the question that Ms. Bucy just raised,
and that is, who is responsible for these children and whether or
not we are taking responsibility for these children. I think
that really is a very fundamental question and there is a
barrier where we do not take responsibility and it gets back to
something that Dr. Crenshaw raised for me. That is that until we
identify that this is a national problem, that it affects all of
our children or most of our children are sexually active and many
of them are exposed to drugs or people who use drugs, and that
they come from all races, that they come from all kinds of
economic backgrounds, and then we have a subgroup of children who
come from poor and minority communities who are at even greater
risk, until we get to that point of having public understanding

210

 

 
 

 

 

of that as an issue, we continually face a barrier. Whether it
is at the national level and the willingness to commit federal
resources, or it is at the community level where you have a
community that says, well, this is not really our problem, these
are not really our children. We cannot take responsibility for
this--at every level, that is a threshold question and as I
said, there are some more detailed policy responses I am sure.

DR. SHALWITZ: There are number of other major barriers
real specific to some things right on the street. Number one,
the crack crisis on the streets is overwhelming. If things were
bad on the streets a couple of years ago, they are so bad now it
is out of control. Crack is easy to obtain, it is cheap, it is
easy to deal it, the high is like that, the kids feel great, and
it produces the fastest drug seeking behavior that we have ever
seen in any other drug. It is a problem that is much bigger than
all of us, and it obviously requires some incredible federal
attention. As we see in San Francisco, there has been a lot of
attention focused on law enforcement. So the kids get busted all
the time, and then they get put in jail and there is no
treatment, no support, no understanding of the problem, and there
is this magical notion that if you arrest more people for.
drug-related crimes, you are solving the problen.

You are not solving the problem, and just because all
of these statistics that have come out in the press a couple of
weeks ago about high school students who are decreasing their
cocaine use. It is because these kids are not in school, because
they cannot function in schools and they are out of schools and
they are in the streets and it is dangerous and it also has
created a very violent place on the streets. There are lots of
weapons, there is lots of fear. It is scary and it is much
scarier for the street kids now, and I will tell you it is much
scarier to do street outreach because people are afraid to hang
out in the street. It is scary.

The other thing, minor other problem, besides crack, is
that the kids tell us they are very annoyed about the media
messages. We talk to them and we do education with them, and
they come to learn that they are at high risk for disease, and
they see posters, they see pictures, they see movies and the
people do not look like them. A lot of the people are white,
they are very beautifully dressed, they are very beautifully
composed in these pictures and they Say, who is it, why are not
people like me in those pictures. They want to see themselves
there and they want to get the validation that they indeed are at
risk. So that is one thing.

The other thing that has been addressed in all of the
panels since I have been observing here the last couple of days
is that there is such a tremendous mixed message. You turn on
the TV, people are having sex all the time, they do not ever

211

 

 
 

 

think about birth control, no less AIDS risk reduction, and until
there is a message that this is appropriate behavior and it is
commonly accepted behavior, it is just clearly not going to be
heard and seen. Why don’t those people start doing it? They
need to put on their seat belts, they need to get out condoms,
they need to talk to each other about sex and about everything.
There is so much power in this entertainment and media world and
hopefully it can be redirected so that messages become more
clear.

Those, to me, are major obstacles. The last one, I am
going to say one other major obstacle. The place where we have
gotten a lot of our money to do education has been through family
planning money. Family planning monies are drying up so that it
is a twofold problem, the loss of those revenues and no source of
new revenues for us unless there are definite monies that are
identified for serving high risk youth.

MS. PRICE: I think an additional barrier which we see,
it is very difficult to access services to these kids. It is
extremely rare that you have a street kid who has not had a
history of some form of treatment or contact with human services,
and what happens generally, and I believe it produces street
kids, is that they are stigmatized.

They are labelied as being somehow an acting-out
adolescent and nobody is doing an assessment to really look at
the family problems that contributed to their being in the
position that they are in. There is nothing which mandates any
kind of intervention with the family so that what happens is this
kid who is labelled as being a problem child and in need of
treatment and the larger picture is never addressed. These kids
are very often scapegoated in their families and then when they
become street kids I believe the scapegoating can also continue
by different service providers, and I think that these kids are
victims and that is something which people have to realize, that
they have the history of victimization that goes back to their
early childhood.

They are not on the streets because they are setting
out to have a good time. They are there because that is, for
them, a healthier environment than where they have been at home.
I think that we have to have prevention efforts to work with kids
before they get to that point, and the other thing I think which
is difficult is that this victim blaming continues into the
prostitution. When we are talking about adolescent prostitution,
we are talking about adults who are paying teenagers for sex, and
they are paying by and large, I believe, for sexual abuses that
these kids have to predispose them to being involved in
prostitution. There is very, very little intervention with
those adults, and there are legal consequences for those adults,
but instead the stignia is put on the child and it is the child

212

 

 
 

 

who people want to lock up, who people want to contain, and
nobody wants to deal with the fact that there are adults who are
very much contributing to this.

The only state that I am aware of is Oregon who makes
no distinction between the purchaser of sexual services and the
seller of sexual services. But what happens is that this
contributes, this stigmatization contributes to a lowering of the
self esteem of these kids, and these are not kids’who feel good
about themselves to begin with, and so it become harder for them
to reenter into society when they have this stigma.

And, finally, along those lines, is for people to be
really clear that not all runaways are involved in prostitution.
I think that is something that the media has been, for various
reasons, sensationalizing. It is extremely damaging to kids
because what happens is the kid may run away from home, stay on
the streets for two weeks, four weeks, a couple of months, and
then try to return to their home community and in general, when
they return, they now have the stigma of prostitute to contend
with. They may never have been involved in any prostitution but
it becomes difficult for them to reenter into their local high
school when they are known as the runaway prostitute, and I think
that there needs to be more accurate information through the
media presented about these kids.

MS. BUCY: I could not agree with you more on the
stigmatization. It seems that easily labeling all of these
children or giving very, very high numbers for a prostitution
rate, appeals to some people, including the media, but it isa
very, very destructive practice. These kids often are not
prostitutes. In fact, I talked with a program provider the other
day that said many of the children are getting very good at
stealing, that they have decided that prostitution and drug
dedling is much too dangerous and so now they are picking up
their skills and just plain ripping things off. I am not sure
that is progress, but kids are forced to survive in whatever ways
they can, and there are more means of survival than prostitution,
and for many of the ways they survive, they should be
congratulated and not forced into a victim sort of position.

We need to disabuse ourselves of the notion that
raising children or caring for children well is cheap. It costs
me a whole lot to feed my children, to take care of them, to get
them educated, and for us to think that we can take children into
the custody of the courts and become their parents as a
recognition that their families have not functioned and that we
can do it on the cheap is really pretty foolish.

I would say first we need to strengthen families. Many
of these children run from families where there is a great deal
of’ chaos. The best research and more that is coming in now

213

 

 

 
 

CO

affirms that as many as 70 percent of these families have been
places where the children have been severely abused or sexually
molested. These are not kids whistling their way off to the
circus because they were unhappy with something light and airy
that went on at home. These are severely troubled children who
come from severely troubled families, and many of those families
can be helped. I have seen women with tears running down their
face saying they know their boyfriend is molesting their daughter
but he brings in the groceries. We should not force families
into the position that mothers have to sell their children for
groceries.

We can strengthen families, we can teach people how to
be better parents, and how to discipline their children without
violence and how to deal with alcoholism without taking out on
children. I would like to pick up with what Ginny says, not only
do we need to prosecute those people who prostitute children, but
we need to prosecute those people who harm children within their
own homes, and when the word gets out that it is no longer safe
to beat up on children, that you can no longer molest children
and nobody will know and nobody will care. When the word is out
that this is a crime and you will be punished, I think it will
have a great deterrent on that sort of thing that people now get
away with.

Third, I have forgotten which of you mentioned this,
but always in the Network and the Runaway programs, we have
talked about involving the youth themselves. Many of our best
answers for things that could be done and things that work come
from the young people, and I would encourage anyone who is
planning and implementing programs for young people to involve
those young people in it. They can tell us whether they
understand. They can tell us whether the programs meet their
problems.

 

One of the problems that kids have which they will
certainly tell us about is how easy it is to drop out of school.
Teachers fuss, and they do not like the kind of work you hand in,
and they do not like it that you are absent and pretty soon, you
drop out and nobody much looks and nobody much cares. But have
you every tried to drop back in school? That is really hard.
There are barriers and once we get rid of those kids who are
disruptive to our classrooms, we have a lot of ways to keep them
out. This is particularly true for children who are homeless
when they move from one school district to another, do not have a
permanent residence or do not have a taxpaying parent in that
district. We prevent their going to school, and that is not a.
very good thing to be doing. | | | |

We need more connections between our youth service
programs and our medical schools or our public health training
schools. Youth service agencies provide opportunities, wonderful

214

 

 

 
 

 

internships and placements for students where they will learn a
great deal about how families function, or do not function, and a
great deal about the kind of services that young people need
Placing students on internships or rotations in those programs,
greatly strengthens the program. At the same time, people are
well trained in one of the underserved areas.

Universities can also be good sources of interns and
staff people for programs. Although the university education is
certainly an expensive process, youth service programs need very
little money to be allocated to them, to supervise interns,
student placements are an inexpensive way for them to get very
good staff, and I would encourage you to validate that as a way
of reinforcing these local programs.

CHAIRMAN WATKINS: Dr. Lilly?

DR. LILLY: I just have a relatively brief question.
You absolutely overwhelmed me with facts, only a few of which I
knew. One of the things that I did not catch until very recently
when Ms. Bucy addressed the issue is the geographical range of
organizations that cope with these kids. I know that in New York
City, we do have some. We have some that are general, we have
some specialized ones. We have one, for example, that is mostly
interested in gay and lesbian youth, I think that is a very
necessary one there. What about other large cities, what about
medium sized cities, small towns and the youth there and the
resources to take care of them in the other places?

MS. BUCY: There are programs across the country, in
every state. The federal money is divided proportionately to the
population of young people in the states, and there are needs all
over the country. I rode with a unit of the Police Department in
New York City one night, and watched the way that they worked
with young people, and listened to the statistics of the kids
that they had picked up. I did some little arithmetic in my
head. I am sure this is not terribly accurate, but if their
figures are accurate, there are more runaway children per
proportion of the population in Galveston, Texas, where I worked
than there are in New York City. Now, I know the problems seem
overwhelming in these cities, but there are services in those
cities.

Many of our rural children have absolutely nowhere to
go when they are molested or when they are terribly hurt at home
or when they are so depressed that suicide or doing something
like that seems the only way to escape. There is very little
except a big, wide world with trucks running up and down highways
that they know can help them escape their pain. So I think as we
look at the problems, certainly the AIDS infection seems to be
centered, hopefully will not spread as much to the middle of the
country as it has to our northeast corridor and California,

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these children who are at risk and whose behaviors put them at
risk are all across the country. So we need to extend our
efforts to every little community of the United States, not only
for our AIDS education, but because children should not have to
live in the gutter.

DR. LILLY: One thing I would say to that, that while
it was very much true in the earlier part of the AIDS epidemic,
that cases were occurring in very specific portions of the
country, if one follows year by year through the epidemic, the
percentage of cases that are attributable to those early centers
such as New York, San Francisco, Los Angeles, Miami, etc., is
decreasing. So I would just like to make a slight correction
that in fact you cannot escape AIDS by going to Ohio or Utah any
more.

MS. PRICE: Well, there are a lot of shelters that are
available. There are not very many street outreach programs for
these kids. I am aware of probably between 15 and 20 programs
nationwide. Because we have both a street outreach program and a
drop-in program at the Bridge, in addition to offering shelter,
we see a range of kids. We break kids into three categories for
homeless. We have kids who are living in shelters, kids who are
actually out on the street, and kids who fall into a category
that we call dependent on friends. When you say where did you
stay last night, they say, stayed with a friend. Where are you
going tonight? Different friend. A lot of times these are the
kids in prostitution who are staying with different tricks. What
we have found is that less than 20 percent of the homeless kids
that we work with are staying in the shelters so that there needs
to be. An outreach effort to the kids that extends beyond just
working with the kids in shelters to working with kids on the
streets. It is very rare in this country that those services are
available.

DR. SHALWITZ: In San Francisco, which probably would
be considered to be quite wealthy in terms of its services to
homeless and high risk youth, a kid cannot get into a bed for
longer than 10 days. If you are feeling poorly, you are feeling
bad, you really need a place, and, God forbid you need respite
care because you are infected or because you have any other
problem, it is 10 days max. There is tremendous effort on the
statewide level and on every level to get some monies, to get
legislation so that there is long term, safe housing. It isa
huge problem.

Then, in San Francisco, again, where it is estimated
that there are 1,000-2,000 kids on the street at any one time,
there are no more than 30 beds for the kids so the problems are
astronomical and again I talked about the crack crisis. There is
no way I could stop talking about it. Its impact is just
enormous, and one other thing that is interesting about San

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Francisco is with everything that is going on and all of the
wonderful behavior changes in a certain part of the population,
there is not one county funded, local funded drug treatment slot
for an adolescent, not a one. There is not one residential bed
for an adolescent, you encourage them to get off of drugs, you
encourage them to get clean and feel healthy and take care of
yourself, they cannot get a bed for longer than 10 days, they
cannot get a treatment slot. It is kind of like flapping in the
breeze.

DR. LILLY: Even in my neighborhood in New York City,
I am certainly aware of crack, it is there. Is it in Podunk
Junction, in any tiny town?

DR. SHALWITZ: Yes.

MS. JOHNSON: Anecdotally? I grew up in a community in
Indiana just north of Gary, a community of about 35,000
individuals with a lot of high risk young people, black and white
and fairly ethnically diverse community, a lot of people there
work in the steel mills and other industries, the few that are
left, many people do not work there these days, especially young
people. It is there. It is at least there. I can anecdotally
tell you that I know it is there. I know that my nieces and
nephews have friends who use it so it is there today and I am
sure that it reaches into a lot of other parts of the Midwest and
so-called heartland.

CHAIRMAN WATKINS: Ms. Pullen? Dr. Lee?

DR. LEE: When I first looked and heard your panel, I
noticed how subdued you all were. It is such a staggering thing
to have to work with that I can understand that it does some
damage deep inside. Our Commission takes this issue that you
are talking about very, very seriously. Probably the initial
impetus to get into the problems with drugs came from our concern
for the kids, for the HIV babies, and the fact that practically
100 percent of them are products of the drug industry.

Let me just reassure you a little bit about what we
have done and what we are going to do. Ms. Price gave us some
recommendations. Your first one was a clear federal policy on
AIDS. Just this morning, Admiral Watkins has told the assembled
group here that that is our primary function, to produce that,
and we plan on doing that. Effective education efforts, this is
probably our primary goal in what we are doing, is to ensure
these education efforts. You say, recognize the contributing
social problems. We have heard this, we have requested people
and talked about this before.

You have certainly made more of an impression on me
that any other panel I have heard. We are holding other hearings

217

 

 

 
 

 

in April on precisely those social problems that underlie drug
abuse and the family disruption and the social disruption that is
producing the maelstrom that AIDS has revealed to us. We have
fears of getting a little bit outside of our AIDS mission, but as
you unroof the boxes here, you just get into these terrible,
terrible problems. I do not think a Presidential Commission
ought to run away from them. Provide additional funds. Admiral
Watkins has already been under a lot of criticism because he has
asked for quite a package and undoubtedly there is going to be
more to come.

Let me ask a couple of specific questions as you made
so many terrific statements. One of them is the fact that these
kids are running away from something. They are not running to
the circus as you said. You gave a statistic, and I want to know
what type of family they are running from. We are going to get
into the family issues and I have had this predisposition that
the family is probably very essential to solving the problem. We
need the father back in the family. Now, on the other hand I am
hearing from you people that it is the father that is beating up
on everybody. What type of family, are they single parent
families mainly they are running away from, is it mentally ill
families, or is it abusive men in the families or is it total
mixture?

DR. SHALWITZ: A, B, C, and D.

DR. LEE: The whole thing? I mean, in equal
distribution.

DR. SHALWITZ: Well, some of them look pretty terrific
too, on the outside. They look every single way a family could
possibly look. They look well dressed, they look poorly dressed.
Some are in mental institutions, some in drug treatment, some are
just single parents, some are extended families. It comes in
every color, every race, everything that you could possibly
imagine.

MS. PRICE: Let me give you a little data on Bridge
clients. We find that only about 20 percent of our clients come
from an intact family.

DR. LEE: Come from what?

MS. PRICE: An intact family, and consistently 65
percent of the clients have one or both parents who are alcoholic
or substance abusers. In a survey that we did of our clients, we
asked them about physical abuse. Sixty-five percent of the
clients said that they had been physically abused at home.

Thirty percent refused to answer. I would like to say that very
often a child who has been physically abused will keep that a
secret and only five percent of our clients clearly stated that

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there. was no physical abuse in their family so it is all of these
factors. Twenty-five percent of the kids in the survey reported
that their family had significant mental health problems so all
of them, to different degrees, are contributing to it.

DR. LEE: You have presented your information to this
Congressional Subcommittee on the Family? Have they heard this?
Obviously, they have heard this. They are concerned, this must
be their main concern, and in a society like the United States of
America, I just do not think there is a defense conceivable for
allowing 1.2 to whatever million children to be wandering around
in this kind of a situation. I can understand it in profound
poverty. In this country, I cannot just imagine how anybody can
defend it. We must solve this problen.

MS. BUCY: Yes, we have. Of course, the Subcommittee
that has oversight of the runaway youth program also has
oversight of child abuse and all the other programs, every one of
which gets cut because domestic programs are not important or for
whatever reason that our country has to let the deficit ride on
the backs of children. I think you really have an important
point there. Several of you have said you did not know these
facts, you had not thought about these children, and it is
difficult to understand why it can happen.

I believe that the American people simply do not
realize how many children are getting ground up in the social
problems of this country, and how many children are totally
thrust out. We just have not let it penetrate our conscience. I
have got this happy thought. If we ever did, they would respond
appropriately. I do not think we believe in letting children
live on the streets and eat out of garbage cans and have to
prostitute in order to have someplace to sleep. If you could
tell me how you get that word around, we could perhaps do a
better job. But I just do not think people have snapped to it.

DR. LEE: Basically, we all are to blame here because
this is a Congressional Committee. This is on both sides of the
aisle we are allowing this thing to happen. I have nothing to
lose so I am going to belly ache by telling them. What do you
think about the fact that perhaps jobs are at the bottom of
these destroyed families, no jobs, joblessness. Do you think
that is a threat? Do you think that is something that is
profound or do you think it is incidental?

MS. BUCY: Obviously, children are troubled in all
strata of society but just as in everything else, people who are
more affluent can access more resources to do something about it
and when troubles come along, they have more places to turn.
They can get psychiatric treatment for their children or
hopefully for themselves because it has been my experience that
most of the problems of these children are the problems of the

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adults in the family and not primarily the problems of the
children, although children who have been raised in crazy,
chaotic families can get pretty crazy and chaotic. It takes
very skilled adults to work with them and help them change those
behaviors, but it can be done.

DR. LEE: Of the families, where does unemployment come
in those families? Is it 70 or 80 percent of them?

MS. BUCY: A great many of then, particularly single
mothers and with our minimum wage what it is today, a single
mother can work even two jobs at minimum wage and she still does
not get enough money to take care of more than one child. There
is just no way that a person without education themselves and
without the possibility for a good job, can work and provide for
a family without some support system.

DR. LEE: Do you think jobs is at the bottom of it? A
job for the man, will that put him back in the family, will that
make him happier and stop beating up on everybody?

MS. PRICE: I think that contributes to it, but by no
means is it the root of the problem. We have found a quarter of
our kids that report that one or both of the parents work as
professionals, and it is what is going on in the family. There
also is a downward progression. It happens when there is a
divorce in the family and there is not chila support that is
being paid or one or other of the parents who is drinking and you
begin to see all of these other things begin to play in. There
is also at the other extreme, we have a quarter of our kids that
report that welfare was the primary source of income so I would
not say that that is the root that you can trace it all to but it
certainly is a contributing factor.

DR. JOHNSON: Dr. Lee, I see a link there that goes in
two directions. We think about children and we think about them
being out of school and we try to figure out how we can reach
them. Well, we think about an alcoholic or an abusing parent and
we think about that parent being out of employment. That is the
Same to me as school for a child. That is their linkage to the
system, that is where they have peers, that is where they have a
social support system. Whether it is counselling that is
provided at the work place or whether it is going out with a
buddy after work and talking about what has happened at home and
frustrations, there is a social linkage there that is certainly
very important, I think, to the fiber of mental health for
members of a family.

And the other issue is obviously the economic
connection and when you have economic stresses in a family, those
stresses compound themselves into a lot of other behaviors which
are very negative to the strength of a family.

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DR. LEE: Mr. Chairman, I will finish now, in the
interest of time, but I do not feel like it.

CHAIRMAN WATKINS: Are there any other important
questions before I close out this panel because we are going to
have to move along. I empathize with a number of points that
have been raised here. I have been working now both within and
without the Navy since I have retired in the whole area of
connected versus unconnected youth, youth at risk and
disadvantaged youth. In my wanderings around the nation, I have
gone to a whole range of conferences on youth at risk sponsored
by the National Governors’ Association, Education Commission of
the States. I have read the material from the Children’s Defense
Fund, many of your own organizations, studied it a great deal,
worked on the Carnegie Council on it and many other
organizations. One thing comes through clearly to me, and I
think Ms. Patterson-Bucy touched on it, that we are not going to
solve this problem unless we involve our young people with us.
If we think we can dictate down all the time to then, and not
involve them as part of the solution, I do not think we can do
it.

They are the solution. They are the hope for us to get
in there, and in every single instance where the unconnected
youth has become connected again, to a person they will raise
the hand and say it is okay for the adults to be there, we need
that adult guidance but you had better get me one of my peers
because that is what brought me back into the mainstream. In the
Navy we had sailors helping sailors. They are called career
counsellors because they could understand the language and they
were right there with them, and they had been in trouble before
and had come back into the mainstream.

It seems to me there is a mechanism here in the country
that we are not tapping, the tremendous resource of our own
people. In the schools, the encouragement and the incentive that
can be given to those who have fallen out that we can bring back
through our outreach programs and make them part of our peer
mentoring, our counselling, our instruction, and it seems to me
that we do not concentrate enough on it. We want to dictate
policy from the top down, but we need to have young people
involved. You said it yourself that we must get them involved
with us.

Well, to what extent are we really getting them
involved, and I am talking about the people who have faced the
tough life and come back. We should grab hold of them as our
key mentors to bring others back and certainly the reason that we
were able to turn around attitudes and morale within the military
was by this technique because sailors knew that they were the
real solution and they were.

221

 

 
 

 

It seems to me we are not using our young people. If
you have any ideas of how we might take advantage of where these
intervention strategies have worked and perhaps try to get some
kind of a national movement going with incentives, perhaps even
at the Presidential award level, where people who have been
outside with drug abuse or whatever can be role models. At
Rich’s Academy in Atlanta, a young, 16-year-old black girl sat
next to me at lunch and had a 2-year-old boy. That is a pretty
tough life but she had her act together now. She knew where she
was going, she did not have a family. She had helpers out there
and she had a lot of peer support in that Academy to pull her
out. Why did we not provide the environment for her before the
fact with peer support and peer pressure but being on the side of
the individual, helping then.

It seems to me that we are missing an opportunity
there, and there is a movement in the nation on youth community
service that seems to me that fits perfectly with the
organizations that you have and other non-profit and community
based organizations. This kind of a movement can be started where
we would have young people to be a part of the solution, not to
do "make work" but to be part of the uplifting process among
their own peers and bring more kids back into the mainstrean.

The Boston Compact, that is a classic example of good being tried
out there. They know they are not as successful as they want to
be with youth at risk.

There are other groups. There is the Community Service
Project in Atlanta where for this year, the high school class of
1988, for the first time, must have 75 hours of community
service. So much of it is going right back into youth service,
helping others, helping other youth to come out of the morass of
hopelessness and back into the mainstream. It seems to me there
is an opportunity here and I would be interested if you would
think about it. You are an unusual panel and you are right in an
area of great intense personal interest on my own part. It
seems to me that there is an opportunity here to explore that a
little more, and I would like to receive a letter from each of
you, if you would, thinking about this.

Beny Primm who is at our table hére will talk about the
intervention strategy for drug addicts and it often requires us
to take that reformed addict and put them right back to work
helping. The same with Alcoholics Anonymous. We have learned
it before. Why do we not do it in the case of young people and
get them back in with us in a big way?

MS. BUCY: I think that is a wonderful suggestion and I
think most of us do that, most of us have young people on our
boards to make the corporate decisions as well as the program
decisions. I would like to affirm what you are Saying about one
more thing. In the 20 years that I have worked in these

222

 

 
 

 

programs, what has come through loud and clear to me is these
kids are not deadbeats. Sometimes their families seem to be but
the young people just do not let the world come raining down on
their heads. They look around in this chaotic family and they
say "This is not getting me anywhere. I want something out of
my life." The young people who come to the shelters, who are
looking for something better have a lot going for them and you
can build on that, and they can share that strength with others.
I would certainly agree with you that that may be the most
underused resource that we have.

The difficulty, again is from the money point of view.
To get youth participation programs, you need adult guides, and
there has not been a whole lot of enthusiasm for that so I would
certainly welcome your sanctioning that idea as a very, very
valuable tool.

CHAIRMAN WATKINS: There are places in the country
where it has worked beautifully in partnership. You go into a
city like Rochester where you have a chief executive officer of a
major firm like Xerox in David Kerns, and he will help bring that
whole city alive. It takes a few leaders and their combination
of excellence out there in leadership in certain areas of the
country that can be role models for others. Indiana comes to
mind. Indianapolis has one of the finest health fitness
facilities in the world, certainly the best in the world, and
they open their doors to all youth, disadvantaged and others
where they have no other opportunities to come in under a strict
regimen and they like that. They have some of the best
community-based run community projects, youth service projects
that are just starting now under an endowment by Lily and
matching funds from the state and the cities. They started with
business partnerships from the grass roots up, Knowing that
unless business gets in the middle of this and their corporate
management gets involved, they cannot do it because they have to
learn how to put their arms around these kids that have no
families. We cannot beat on broken families when 60 percent of
the 18-year-olds and under will only have one parent by the turn
of the century. We have collected that demographic data, and we
know what it is and we have got to deal with it.

Make it part of the development of all Americans, both
in the academic side and the practical side, doing something
useful for community and certainly getting these youngsters who,
when they come back, are so turned on, far more than many of us
who kind of slip through the normal process. Some of these kids
really get fired up when they get back and will have a dedication
for life to helping others. I think this Commission can help in
that regard, to air the things that many in the nation do not
understand or disbelieve it is not happening here. Would you be
willing to send me a letter?

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OT

MS. PRICE: I would. Can I just respond for just one
second? I will make it quick.

CHAIRMAN WATKINS: Yes.

MS. PRICE: All of our work that is successful with
kids always utilizes the kids. There are some inherent problems,
and I think that they never can be ignored and that is if we are
using indigenous people or street kids, they still need to have a
bed, they need food, they need support, and you do not get those
things magically. They are our best resources so you need to
help us get those beds and the food and the support that they
need so that we can work with them and encourage them to be the
real foot soldiers out there in the streets.

The second thing is for young people in the community
to become a volunteer, I want to say again the streets are a
dangerous place. It is very rugged out there, and I do not know
how many people are going to feel so positively about their
youngsters coming in to a very potentially dangerous place and we
all value our youngsters. I know I do, and I might have some
second thoughts about sending my pre-teen out there as well so I
just wanted to make those comments.

CHAIRMAN WATKINS: I am talking about a concept of
involvement in the solution to the problems that you have
outlined. When you do not hear too much about the young people
themselves being part of that solution, I begin to worry a
little bit because young people who have come back into the
mainstream invariably tell you that it was one of their peers
that brought them back in. I am just saying that to throw it out
on the basis of potential fear might turn off an opportunity here
to turn attitudes around and involve young people in helping
others. I believe you can get partnerships going in the nation
and partnerships are coming alive. I think that when we get the
American business leadership and industry totally involved in
local community-based organizations and so forth, in a real
spirited way because after all, even self interest would drive
them in that direction.

 

So everything says it is the right time to move this
direction, and so I encourage you to come forward to me with some
specifics.

Thanks very much for coming to us today, and let us
keep our dialogue open with you. You are a very talented panel,
and you have given us some impressive insights today and to our
country. Thanks a lot.

(Whereupon, at 12:15 p.m., a recess was taken until
1:15 p.m., the same day.)

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AFTERNOON SESSION

CHAIRMAN WATKINS: Welcome. Our first panel this
afternoon is on minority education, with the following speakers:
Dr. Herbert Nickens, Director, Office of Minority Health, US
Department of Health and Human Services; Fernando Oaxaca,
President, Coronado Communications Corporation, Los Angeles,
California and Ravinia Hayes-Cozier, Director, AIDS Education and
Outreach Services, New York City Department of Health.

Welcome to the Commission, and Il would like to start
out then with Dr. Herbert Nickens for the first statement.

DR. NICKENS: Thank you. Chairman Watkins and members
of the Commission, I appreciate the opportunity to testify
before you today. The Office of Minority Health was created to
oversee and to ensure the implementation of the report of the
Secretary’s Task Force on Black and Minority Health. That 1985
report provided the most exhaustive documentation ever done of
the health status disparity in america between Asians, blacks,
Hispanics, Native Americans as compared with the white
population. An example: Of the 140,000 black Americans who on
average die every year prior to age 70, about 59,000 or about 42
percent would not die if black Americans had the same death
rates as the white population. As a generalization, minority
Americans die from the same causes as do white Americans only
more so. About 80 percent of the excess deaths among minorities
come from just six causes, cancer, cardiovascular disease and
stroke, chemical dependency, diabetes, infant mortality and
violence.

The full Task Force report runs about 3000 pages. The
magnitude of the minority health problem detailed by the report,
as well as the large number of recommendations it contained made
it clear that some implementing mechanism was required. The
Office of Minority Health or OMH, as we call it was created in
December 1985. For a variety of reasons, the Task Force report
did not include a discussion of AIDS. However, soon after the
office was organized, the data made it clear that AIDS must be
added to the other six causes of death with which OMH is
concerned. However, from our perspective, AIDS is but one of a
cluster of severe health challenges that confront minority
Americans. In general the problem of minority health is often
seen solely from two extreme perspectives, one too narrow, the
other too broad. Too narrowly, minority health is sometimes seen
as a product of too little access to health care. At the other
extreme, minority health is often seen too broadly as primarily a
product of poverty, therefore, only amenable to economic
solutions. Both extremes contain some portion of the truth.

225

 

 
 

 

In the Office of Minority Health we believe that
health education in empowering minority communities around the
issue of health can both amplify the salutary effects of the
health care system, as well as blunt the effects of poverty. In
order to achieve this, we believe that direct funding of
community-based organizations with technical assistance, as
appropriate, is a powerful tool to improve minority health.
AIDS, albeit in a compressed time frane, presents similar
challenges and requires similar solutions as do the other
so-called "big six" causes of death. More information regarding
OMH’s programs can be found in the written testimony I submitted
earlier.

Specifically with regard to the topic of this panel,
AIDS and minority education, I would like to conclude with the
following comments. Given the time urgency and the complexity
of HIV infection among minorities, a nationally coordinate,
multipronged minority AIDS education strategy is required. That
strategy should include the following considerations. One, as you
know, minorities are disproportionately represented among persons
with AIDS. Moreover, overwhelmingly, AIDS among whites occurs
among homosexual or bisexual males.

On the other hand, among minorities homosexual and
bisexual males represent only a plurality of current AIDS cases.
Transmission through the sharing of needles and works and
heterosexual spread are, also, very significant. As a result,
among minorities, AIDS is, also, a disease of families: men,
women and children. Therefore, the behavior change challenge
required for effective prevention is by orders of magnitude more
complex.

No. 2, a national minority AIDS prevention strategy
should utilize the analytic and communicative techniques
developed by the advertising industry, including, but not
limited to, identification of and research on market segments
which include variables, such as race, ethnicity, language
preference, age, sex and HIV transmission risk groups.

No. 3, indigenous minority institutions and leaders
are essential to credible communications and must be empowered
and trained regarding health in general and HIV infection in
particular. Examples of such institutions are churches,
schools, fraternal organization, as well as community-based and
national minority organizations of other types.

No. 4, more traditional public health related agencies
and organizations, for example, public health departments,
hospitals, health professionals and voluntary organizations must
be encouraged to become full partners with those others
described above.

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4

Fifth, and last, particular attention must be paid to
achieving behavior change among intravenous drug abusers and
their sexual partners. Otherwise without an effective treatment
or vaccine, this group could provide a permanent HIV reservoir.

Though health services are not the subject of this
testimony, many of the same organizations and efforts described
above must, also, be enlisted and empowered if a rational and
humane HIV infection service delivery system which effectively
serves minority populations is to be constructed.

Finally, in a sense, AIDS presents us with both a
crisis and an opportunity. A service and prevention
infrastructure must be created in response to the crisis of AIDS
among minorities. America should avail itself of the
opportunity to utilize this infrastructure to attack all of the
diseases that create excess mortality and morbidity among

minority Americans. Thank you.
CHAIRMAN WATKINS: Thank you very much, Dr. Nickens.
Mr. Oaxaca?

MR. OAXACA: Thank you, Mr. Chairman. I, too, welcome
the opportunity to be here this afternoon with you and the rest
of the Commission. I was cautioned several times by your staff
to try to keep my remarks to 5 minutes. I will try dutifully.

I hope it is not an expression of the importance of the subject
we are trying to cover because 1 think in particular the
Hispanic community, with its language problems in many parts of
the country and certainly even its cultural separation within
the immigrant portion of the community makes learning about AIDS
and the other issues associated with that is a very, very
difficult process indeed.

I happen to be in the media business, as well as in
the communications business in general and currently am running
the program for the Department of Justice on informing the
American public about the new immigration law. Part of that
involves trying to communicate to aliens who are here illegally
how to apply for amnesty. That is almost as difficult a job
perhaps as informing people about something as complex as AIDS,
convincing individuals that they should trust the government,
that they should trust authorities who have in the past pursued
them and let them now confront that government in seeking to
change their status. The only reason I mention that is I see
many analogies between that and the communications problem and
what faces our country in the AIDS arena. I think one of the
biggest lacks that we feel exists, also, is research not in the
classic sense of understanding the disease or what can cure it,
hopefully, someday, but I am talking again with regard to
communication. We don’t know what we don’t know in the Hispanic
community, and I suspect in the Asian community and a lot of

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other groups that are a little more distant from main street
communication.

We break up like many other parts of our society,
different economic levels, educational attainment, but we add
the complexity of how long people have been in the country, how
well they know the English language. It creates subsets of our
part of American society that know about: the problem at
different levels. In fact, the very beautiful papers by both of
my colleagues here, highlight that the minority community is the
least educated, the least knowledgeable about the problem that we
are talking about. Therefore, the educational process is just
double or triple the complexity.

The main thing that I want to appeal today is that
there is still an opportunity for prevention in a lot of
elements in our society. There is still an opportunity to
educate people, and we have the horrible task of finding a cure,
of scientific solutions. I am only saying, "Let us not forget
about the educational and communication problem that faces us,"
and we are going to have to spend some money to do it.

I suggest that maybe a few hundred thousand dollars
can do that research to find out how much is known by people so
that then you can design the advertising program, the public
relations program that it would take to reach these communities.
I want to stress that the old approach of public service
announcements and "freebies" in other words, appearing on NBC or
CBS or ABC, that will not do it in this case. We need to get to
ethnic media. We need to get to small radio stations. We need
to get to the Spanish language television nets. We have to get
to the little weeklies that barely survive every day, every week
to communicate to these communities. That is how these people
find out what is going on, and you are going to have to pay for
it. I am suggesting that within a trillion dollar national
budget or a billion or two billion dollar AIDS budget that
somehow you could find 30 or 40 or 50 million dollars to initiate
this kind of communication program with bought, purchased
advertising and to begin addressing this educational task ona
credible basis. The things that Dr. Nickens talked about in
terms of using credible spokespersons from the community, all the
various things are absolutely true. You have to buy your way
into it. You are not going to get it with freebies. The private
sector is not going to move out and do it on its own. They don’t
see an incentive at this stage. I think once they are educated
themselves, your companies, your corporations that hire a lot of
these people will probably play in the game, but you are going to
have to show some leadership at the federal level. Perhaps you
will get some leadership at the state level, but nothing is going
to happen in and of itself, and all the academicians and all the
researchers crying about the issue will not move the system until
somewhere, somehow some real money is put together and is spent.

228

 

 
 

 

That is sort of a summary, really, of how I feel about the
situation. I have discussed what I was going to’say today with
people in television and radio and print across the United
States.

I think there is a consensus out there. I have, also,
talked to some of my black colleagues in the communications
business. They all feel the same way, that it is tough, it is
difficult, and it is going to take money. It isn’t going to be
done on a charity basis, and that is what will have to be faced.
Thank you, Mr. Chairman.

CHAIRMAN WATKINS: Thank you very much, Mr. Oaxaca.
Ms. Hayes-Cozier?

MS. HAYES-COZIER: I, too, like my other two
colleagues appreciate the opportunity to speak before the
Commission on what I and many others have learned about a battle
that sometimes seemed insurmountable, and that is the battle for
education in the area of AIDS.

Every day the AIDS epidemic thrusts itself on a new,
broader and more diverse cross section of the American society,
but nowhere has it had an impact more acutely than among the
minority population. It is for this reason that I will focus my
remarks on an area of the epidemic that is unreported and
oftentimes misrepresented, and that is AIDS education and
prevention in the minority community.

While much has been done to educate the public about
the spread of AIDS, educating the minority community has been at
best akin to shooting an arrow at an undetermined target. To
fully understand the impact of AIDS upon the minority community,
you must first understand the community. These communities are
seized disproportionately with problems such as poverty, crime
and of course, something that you all have heard and continued to
hear, substance abuse.

In areas like Central Harlem in New York City, where
infant mortality is as high as some Third World countries, and
90 percent of all prison inmates are black and Hispanic, many
communities view AIDS as just another issue to those that have
already overwhelmed them. These problems, although well
documented continue to be inadequately addressed and therefore
contribute to and compound the disproportionate impact of AIDS
upon minorities. Therefore, let us take a few minutes to talk
about and concentrate on some of the variables that prevent the
kind of education that needs to be applied in the minority
community. Potential barriers for educating the minority
community pose an even greater threat than the disease. We must
pay close attention to current efforts and the problems

229

 

 

 
 

OO

associated with messages that are not being understood by the
community. In order to comprehend the impact of those barriers,
we must first identify them.

Sexuality. While it is difficult for society to
confront the issues of sexuality, it is further complicated by
the denial in the minority community that homosexuality or
bisexuality actually exists. Many community people have the
illusion that they are able to identify the one gay black or
Hispanic on the block, when in fact, just as with the IV drug
user, the appearance of this individual takes so many forms,
from the stereotyped to the three-piece suit, from the
uneducated to the educated, to the doctor or lawyer. This makes
this group of individuals even harder to reach because of fear of
isolation and condemnation from family and community.

The intravenous drug user. Drug use has always
plagued the minority community, and it has always been the top
layer of all of its ills. This has caused the community to
respond in several ways as it relates to the IV drug user.

Don’t bother; they won’t change. Sterilize all childbearing
females who are IV drug users. We know what they look like. Let
us round them up and get rid of them. So, any educational
message must take into account the psychological and the
physical state of the drug user, as well as the mood of the
community.

 

Many minority communities have been vehemently opposed
to any educational effort that has the appearance of endorsing
any type of drug use, even though educating the addict about
cleaning his works or exchanging his dirty needles for clean
ones has slowed the rate of transmission of HIV infection from
addict to addict and from addict to sexual partner.

.Let us focus our attention on religion. While many
religious leaders agree that AIDS must be talked about in the
church, not all agree on how and what should be said. This is
particularly important when addressing the minority community
because the church has always been a beacon in a sea of despair
for the minority community. It has been the voice in which
people have learned, understood and reacted to when problems
facing the community have arisen. The religious community’s
response to the minority community about the AIDS epidemic has
sometimes been helpful, sometimes been confusing and sometimes
been moralistic.

For example, many religious leaders are more than
willing to talk about abstinence and monogamy but refuse even to
mention homosexuality or condoms. Other leaders will educate
their parishioners about everything, while some will condemn.
those behaviors that they view as morally wrong. Unfortunately,

230

 

 

 
 

 

the church has not taken the lead in ‘educating the minority
community as they did in the past concerning other issues.

Educating women poses some interesting problems. Many
are not aware of their sexual partner’s involvement in bisexual
or IV drug-related activity, thus putting them at a greater risk
for HIV infection.

Also, initiating new behaviors, safer sex, is often
difficult to accomplish without one’s partner becoming
suspicious or not willing to go along with the request for
condom use or other behavioral change. As a result of these
limitations, educational efforts have been met with denial,
fear, indifference, and we must begin to develop strategies to
help women incorporate new behaviors in their relationships.

Community-based organizations. Minority community
groups while well intended are overwhelmed with many other
problems that confront their communities, and AIDS just becomes
one more problem. The community-based programs are willing to
-do one-time program but without sufficient funds are unable to
continue ongoing education programs.

Minority leadership. Another area of which we should
become acutely aware, minority leadership has been slow to
address the issue of AIDS. One might say that no one wants to
be the first one on the block to deem AIDS as a minority
problem. These leaders fear that once AIDS is considered a
minority problem funds will dry up, and talk of quarantine will
begin.

AIDS brings with it many social agendas, and because
of the stigma associated with homosexuality and IV drug use,
many leaders feel that to address this openly and vocally raises
questions about their own behavior and may put them in jeopardy
with their constituents.

Last in the area of barriers, minority media have
failed to respond to the crisis. While agencies like Mingo
Jones, a black advertising firm and some other minority media,
print and broadcast, have addressed AIDS in the minority
community in a responsible manner, others like Chocolate Singles
refuse to believe that their clientele could possibly be at risk
for HIV infection, thereby confusing their readership about
transmission due to people as opposed to behavior that put them

at risk.

AIDS has brought out natural fears and anxieties that
have led to a pattern of harsh discrimination against minority
people. You might ask what needs to be done, and I think I
concur with my other two colleagues, that nothing short of a
national strategy that includes funding, that is available for

231

 

 
 

 

community-based organization who are already servicing minority
populations must be put into place. A national education and
prevention strategy aimed at minorities must be directed and
must show more than an IV drug user putting needles into his
arm. It must show more than a white family walking into the
sunset, and it must show the many faces of AIDS.

Outreach programs must be funded because those are the
grassroots of the communities who can march through and reach
people more directly. Research by minority researchers must be
put in place because they come with an understanding of the
culture and the values of the communities. Minority leadership
must take a stronger stance, and community-based organizations
must, get technical and training assistance in order to
incorporate concrete, clear programs in an ongoing basis.

In closing the societal trend of losing two

generations has appalling implications for the minority
comhunity. AIDS raises questions of responsibility that must be
addressed at every level, federal, state and local government, as
well as the community at large. If we fail to meet the challenge
of AIDS today, and let me say that again, if we fail to meet the
Challenge of AIDS today, there will be no need for minorities to
plan for tomorrow. Thank you.

CHAIRMAN WATKINS: Thank you very much, Ms.
Hayes-Cozier. I would like to start. I think Mr. Creedon may
have to leave. John, if you will start the questioning?

MR. CREEDON: I agree with you that the
characteristics of the minority community are probably such that
AIDS needs special attention. I guess one of the questions I
would have is what would be the vehicle for making sure that
everything that should happen does happen; Dr. Nickens, is it
your office or is there some other organization that we should be
looking to? If this is to happen, who is going to make it
happen? Who will have the responsibility for making it happen?

DR. NICKENS: If you are asking about where in the
federal system would the organizing entity be, if that is your
question --

MR. CREEDON: I am not sure whether it is in the
federal system or outside of the federal system. I guess the
question is what would be the most effective organization to do
the job that needs to be done? Is it a unit of the Federal
Government? Can the Federal Government coordinate with the
state and local community-based organizations effectively? Is
it doing it now? If it isn’t, why isn’t it? Why isn’t more
being done than is being done?

232

 

 
 

 

DR. NICKENS: I think that first of all, AIDS presents
us both with regard to other minority issues and with regard to
AIDS itself- a challenge that we have never really addressed
before, and that is how do you organize a systematic national
health campaign to improve the status of minority health? I
don’t think that has ever existed. So, that is No. 1. We are
breaking new ground here, and this disease may make us break it.
Regarding the question of what organizational entity, I think it
needs to be an entity that represents the federal establishment,
and the Federal Government is well positioned in many ways to
perhaps be the organizing entity, but it certainly needs to
include representatives of all the other sectors in our society
that are relevant, and that includes state and local government,
of course, but all the other private sector parts.

Now, that is the organizing part of it. The question
of the implementors, I think the implementors need to be even
more varied, and I think that if you ask yourself the question,
how would you sell the various messages that need to be sold
that may result in behavior change to minority Americans as
diverse and complex as they are I think you come up with a
number of entities that probably numbers in the thousands and
media that are multiple, so that you are talking about a very
complex operation. Unfortunately, it is the only choice we
have, so that you are talking about everything from television
to person-to-person contact to church contact and so forth.

MR. CREEDON: Does your budget for 1988 and 1989,
contemplate the necessity of doing this? Is the level of funds
adequate to do what we are talking about here?

DR. NICKENS: The Office of Minority Health has just
recently officially gotten into the AIDS business, and I think
that we certainly -- our mission in the Public Health Service
and in the Department is really to be an advocate and a
coordinator and to do some innovative programming. I don’t
think at current levels we are organized to do what needs to be
done.

MR. CREEDON: It seems to me it would be helpful to
the Commission if you, maybe three could get together and make
specific recommendations as to what we could do to help you get
the job done, and especially you, Dr. Nickens, where I think
that the natural place for coordinating activities would
probably be you. Do you have enough money and help or whatever
else is necessary? One of the difficulties, it seems to me, is
overlap. We will be dealing with drug abuse problems in
certain ways with certain agencies, and you don’t want too many
people dealing with the same issue, and yet there is the
inevitable overlap here.

233

 

 
 

 

I think the minority problem is apart, because of the
language barrier primarily. We, Metropolitan Life Insurance
Company, did have a program last year for the AIDS awareness
test which was a 2-hour television program. We did translate it
into Spanish, and it was shown, but I don’t know whether it
penetrated at all.

We are doing a series now with Westinghouse TV, and we
are going to do that in Spanish, too, but I don’t know. As you
said, “We still have the Chinese communities, and we have other
communities that are involved," and how you reach them, it seems
to me that you do have to have something that is specifically
looking at that subject and has the adequate funding to do the
job.

CHAIRMAN WATKINS: Dr. Primm has to leave here shortly
for a Drug-Free American Council Meeting. So, I will ask Dr.
Primm to go next.

DR. PRIMM: Thank you, Mr. Chairman. If I remember,
your office was established primarily to look at some of the
problems that face minority America that were pointed out in
Secretary Heckler’s report. They were specifically
cardiovascular disease, if I recall correctly, stroke, chemical
dependence, diabetes, homicide, suicide, drug abuse,
unintentional injuries and infant mortality. So, I would
imagine that you taking on the task to do something with AIDS
would fall under, I guess, unintentional injuries or whatever,
Currently your budget is a very small one, if I recall, and that
was to include Asians, Pacific Islanders, Native Americans,
Hispanics and blacks in this nation and that you had a budget of
$3 million to do so. Now, superimposed on your task of course,
is to take care of the problems of AIDS, education on AIDS in the
minority community.

I am wondering how in the world you are able to
function with that meager amount of dollars that has been
allocated for your office under your aegis to do something about
this problem along with all the others? In your investigation
of your initial mission in these areas I am sure you have
uncovered a number of things in communities which you are
destined to serve and have found that the ground is very fertile
in some of them for infection with this virus.

I would like you to comment on that and comment on the
stress and the immunosuppressive nature of the environment
itself as it predisposes to infection with this virus which
perhaps explains some of the disproportionate representation of
these minority groups with the problem of human immunodeficiency
virus infection and AIDS itself.

234

 

 
DR. NICKENS: I will go back to your first comment
first and then come back. I think that the office was set up
really as a coordinating office, and so that was the reason why
it was designed as a small office to utilize the rest of the
Public Health Service and HHS in a sense to try to influence how
those entities spend their dollars and design their programs. We
have been appropriated another million and one-half dollars in
Fiscal Year 1988 to do specifically AIDS. So, we do have an AIDS
budget, and that was what I was alluding to earlier, about we are
now officially in the AIDS business.

I think that as far as how we do what we do, I think
part of it is we have a very motivated staff, and I think that
that has enabled us to try to keep up with lots of things that
we do have to keep up with, but I think it is important to
understand that we weren’t designed to implement the report but
td make sure that it gets implemented.

Now, as far as the final question you raised, I think
that the question you asked in a sense is almost at the
frontiers of science about the impact of stress and status of
minority immune systems, if you will. I think that I don’t
know, and I don’t know if anyone knows for sure what specific
kinds of susceptibilities other issues may create regarding HIV
infection. Clearly the most dangerous circumstance that makes
minority communities fertile grounds is a combination of the
multiple transmission route, (intravenous drug abuse being the
most distinctive, in addition to homosexual, bisexual
transmission, and heterosexual transmission), but combined, with
a kind of isolation that is part of minority status. This
isolation means that information, even if it is beamed over the
television, may not be believed; that no one wants to believe
that they are susceptible to AIDS after all, so that to the
degree that messages appear somewhat alien that the English may
be formal; that the English may, in fact, not be Spanish or
one’s native or preferred language; all these things enable
people to avoid feeling at risk for this disease, and of course,
that is lethal.

CHAIRMAN WATKINS: Yes?

MR. OAXACA: I will address the whole Commission. You
know, I think special problems call for special solutions, and I
would suggest that the Commission might consider recommending to
the President that somewhere within HHS that a central
interagency task force be established for that period of time it
is necessary, and that it be charged with this single role of
public education and information about the HIV epidemic and
AIDS. I understand that the National Centers for Disease
Control in Atlanta has spent money with a major Madison Avenue
advertising firm. There is something going on there that I am
sure is not your office, necessarily, and that may be very, very

235

 
 

 

fine. They are creating PSA’s. Who knows what else may be going
on in that giant thing called HHS, but I think this is a special
kind of problem. It requires some very fast action, and I think
such an office; it happens all the time in our marvelous
government. I spent 2 years here with the Ford Administration,
and I know how things can be done if you have to do it, with
funding, with special direction. I think an advisory board or
some kind of ongoing contact with representatives from the
various elements of the minority or the ethnic communities in the
United States so that there can be a linkage. The implementing
mechanism is going to have to be twofold, it seems to me, in the
main. It is the mass media that currently serves the minority
community. Some ought to be in English and a lot of it in other
languages, tightly working with your community-based
organizations, your activities at the grassroots. Your Chinese
or your Korean is not going to listen to anybody other than a
Chinese or a Korean. The Mexican in Texas needs to be served
differently than the Puerto Rican in New York, and I have a
feeling that the blacks in the Northeast have different media
habits. They are reached in different ways and perhaps with
slightly different messages than they might be in the Deep South.
These are things that are going to have to be all considered in
trying to communicate, and you cannot have a monolithic approach
to this problem.

DR. PRIMM: Ms. Cozier, you finished your testimony
and left the Commission on a very somber note and repeated it
twice, and it predicted some doom for young blacks or minorities
here in this nation if something is not immediately done. You
serve New York City, I know, as Director of Education in the New
York City Department of Health. What do you feel that this
Commission could recommend that would make your life a lot easier
and make you change your very pessimistic ending to an optimistic
one? I would like, also, to have that kind of answer from you,
Dr. Nickens, if that is possible, and certainly if you would
suggest to me either today or through the Chairman some of those
things that I could do personally to make things better for
minorities in this country. I would like to do so. So, if you
would, I would appreciate that.

MS. HAYES-COZIER: At a governmental level, I think
that is something that we all concur with, that it has to be a
strategy that is well thought out and that for once in life
different components of the Federal Government need to talk to
one another. The kind of thing that was just mentioned that one
program is not implemented where another program is implemented
with no kind of end thought to what is going to happen in
behavioral change, and that is what we are working towards, any
educational effort to work towards changing behavior. On the
community level, I think it is clear that that is going to have
to be our direct contact through the community.

236

 

 
 

 

Funding must be put in place, but more so than
throwing money at community-based organizations. We must
provide them with technical assistance and training so that
after AIDS those programs continue to exist, and they continue
to be able to provide clear health care services, as well as
educational messages that are going to translate to behavior
change in the community. Unless that is done, no matter, we
can do it piecemeal, but we still don’t know what kind of impact
or in some sense maybe we do know what kind of impact that we are
having, and that is not in terms of getting people to move from
learning about something and changing their behavior.

DR. PRIMM: You said something extremely optimistic in
your response just then. You said, "Clearly after AIDS. You
must be looking at some crystal ball quite different from the
one I am looking at. I think AIDS will be around for a very long
time. In the previous panel there is no question about it that
one of the panelists talked about the longevity of the disease
entity. So, I think we are going to be faced with it for quite a
while. Dr. Nickens?

DR. NICKENS: I agree with what has been said, and,
also, I feel very worried about the future as well. The
diabolical nature of this virus makes us all get lulled. Because
of the latency period the seeds of disaster can be sown and not
show for so long. The seropositivity rates in addicts and
especially in places like New York City are a good example of how
you can have a population essentially saturated before you
realize what is happening. So, I am very concerned as well. I
think as far as the issue of how we can organize this, I think
that one of the key points that is really important is that we
need to find a way to get more minority input into programs.

The idea of a strategy is critical, but there are sensitivities.
There are awarenesses. There is, also, the willingness to take
certain risks that minorities have as a part of culture and a
part of life experience, and I think those minorities need to be
both in the federal leadership, that is minority federal leaders
but, also, non-federal, state, local, outside citizens, everyone.
I think that we need a cross section of opinion because otherwise
we are not going to go to the targets, and time is of the
essence. This is a critical consideration in whatever this
coordinating entity that gets set up has.

DR. PRIMM: Thank you very much.

CHAIRMAN WATKINS: Ms. Gebbie?

DR. NICKENS: I just want to add that that is not an
affirmative action statement, by the way. That is a statement
of pragmatism. That is the way the job will get done and not
because I am concerned in this context about having goals and
timetables for minorities in this particular structure.

237

 

 
 

 

CHAIRMAN WATKINS: Thank you. We will shift back to
our left to right. Ms. Gebbie is next.

MS. GEBBIE: I am finding in your presentation one of
the clearer examples of what I see as a continuous issue that
has come before us many, many times. That is, the tension
between doing something on a national scale that will accomplish
whatever it is you are doing, clearly directed, focused, do it
once, do it right kind of thing and then the do it locally, do it
uniquely, make it ours, we have to do it here so it will really
speak to the people involved which, also, has a ring to it that
makes a lot of sense. I have heard things, from each of the
three of you that has some sense of both of those concepts, and I
would appreciate some additional comments on that area with
particular attention to education because that is what we are
looking at today. How to get the knowledge for behavior change
to each member of every minority group in this country. Would we
be better advised to create the kind of central body that Mr.
Oaxaca mentioned with a huge budget, an even bigger budget to an
even bigger Madison Avenue firm, saying that you have got to
produce 500 ads, one for every minority group that could be put
on page space or whether we would be better off taking that same
amount of resource and pumping it out and saying, "You all have
the facts. Here is a resource. Do it yourself at a state or
county or city level somewhere." I really would appreciate more
discussion of the relative importance or appropriateness of those
two alternatives or a mix.

MS. HAYES-COZIER: I truly think that it is a mix, and
I think what needs to happen on a national level is somewhat the
educational awareness clear message that is culturally relevant.
I think in terms of actually helping people demonstrate behavior
change, this is going to have to happen on a community level, and
that is where people have access to people, where people can not
only hear about how this virus is transmitted but, also, how they
can take time to practice and incorporate those behaviors that
they need to learn in order to put them at a less risk for HIV
infection. That is going to have to happen on a community-based
organization level where people can practice those behaviors in
their community, get involved in working with the community-based
organization on a long-term basis because those behavior changes
are not going to happen with just one program given by a
community-based organization or one ad put ona TV. It is going
to have to be over a period of time, and it is a process, one
that they have to feel comfortable with, and people feel
comfortable in their own environment

DR. NICKENS: I think that one of the issues is the
question of delegating power. I think that if you perceive a
national strategy where all the power is held tightly in the
central organization, then it will fail. I think what you have
to do is to have a coordinating mechanism at the national level.

238

 

 
 

 

Some of the funds will obviously come from the national level
but, also, a sharing of power down the line so that local
organizations, also, have a sense of having some control,

whether it is factoring local tastes and sensibilities into
programs, or whatever. So, decisions can be made at various
points. I think an analogy, also, may be drawn from advertising
campaigns. When you have a national advertising campaign, you
see the image on your television set, and I think that a key part
of our nation now is that we are all linked together by this
thing called television. But you see an image on your television
set. And then you walk into your local drug store, and there is
a cardboard cutout of the same image with pamphlets in its hand.
There is a link there, if you will, between the national and the
very, very local, that we are capable of doing in our society,
but it is complex. It is not easy to do, but I think it can be
done and is necessary to get the best of both, as you pointed
out.

MR. OAXACA: I think there is another very critical
aspect. When we say, "Education," we have to recognize that in
some elements of our minority communities, it is literally a
blank blackboard we are looking at, a tabula rosa. They don’t
know what AIDS is all about. You are starting from the level of
zero. There are other places where there is greater knowledge,
more sophistication, where there is more language affinity.
Maybe you have as good an understanding as mainstream Americans,
and so, when you have got this incredible diversity of a
generally uneducated public within the minority communities, you
have got to tailor at the local level. But, I think that a
national program, in particular, lends itself to at least
building a general awareness of the hazards, of the dangers, of
the processes for transmission of the disease. There is a
certain level where I think you can set some efficient processes
for communication. Eventually we mustn’t confuse education for
sheer awareness and education for the next level of prevention
and as she points out so aptly that is behavioral change. That
is a different communication problem, and what I am saying is
that unfortunately, we are still very much at ground zero, and we
have not even made that first penetration in general awareness of
the issue.

MS. GEBBIE: My second question, and that is a
wonderful lead in to it, actually, is that we have heard over
and over that it is hard to get people to work on a problem they
don’t know, and one of you pointed out this issue that although
HIV infection has disproportionately infected minority
communities, there is a reluctance to own it because it is seen
then as leading to some other undesirable ends, further
discrimination or isolation. Any insight the three of you could
offer to how to accomplish ownership that turns out not to be
destructive I think would be very helpful.

239

 
 

 

DR. NICKENS: We struggled with that problem in the
office when we started thinking about how to start to help this
issue along. First of all we brought ina group of advisers,
people on the frontlines working against AIDS, in a small quiet
advisory meeting. That was in April or so of last year. In June
of last year, with the CDC, we cosponsored a Minority Leadership
Forum on AIDS which had about 40 national minority organizations
sitting around the table with Public Health Service officials and
some people in the frontlines against AIDS as well. That was a
more visible meeting but still quiet. Those organizations
clearly said "yes, we own this problem, and we are willing to
say that this is our problem". In fact, many raised their hands
and were already involved with AIDS programs. So, I think that
going to leadership, and starting to get people engaged, and
again, empowering them around the issue which does work.

I think it is a slow process. It requires sensitivity
but it can be done, and much of that groundwork has already been
laid. I think clearly the time is ripe, if you will, and many
minority leaders have already publically said, "This is our
problem," and I think we need to diffuse that to the local
level, but I think the ground is fertile. I don’t think that
will be a real problem.

MS. GEBBIE: That is encouraging.
CHAIRMAN WATKINS: Dr. Lilly?

DR. LILLY: I just wanted to address myself briefly to
one aspect of what you have been talking about. I think you
have done a wonderful job of putting the problem of minority
education into perspective. I would simply like to comment on
what I would call the individuals with dual passports, shall we
Say that I have been involved with in the past. As some of you
may know, I was on the board of the Gay Men’s Health Crisis for
some time. There in attempting to educate the gay population, we
found that, indeed, we could get fairly successfully to that
portion of the gay population that was black, but that we were
not at all good at getting to that portion of the black
population that was gay, if you will allow me to make that
distinction. The best that we could do was to offer our services
to train people who did know how to communicate with that
community because we simply did not speak the language, and they
didn’t understand ours. So, I hope that will reinforce the
message that you particularly brought out. Thank you.

MS. HAYES-COZIER: I think that is well taken, about
the black community. One of the things that continues to amaze
me is that when we talk about the conduit of this infection into
the minority community, we talk about the IV drug user. I sat
down the other day, and I started to look at New York City’s
statistics on cases that we had, and to my amazement in the black

240

 
 

 

population, the male population, we had over 1500 cases that were
either gay or bisexual men. In the black male population we had
approximately 1300 or close to 1400 cases that were IV drug
users. That is something that is rarely, if at all ever brought
out so that the community is left with the illusion that the only
conduit into the minority community is through the IV drug user.
We have got to start to face up to the fact that we, also, have
the gay and bisexual population that exists among minorities, as
well.

\

DR. NICKENS: I think the larger issue though that you
are raising is that clearly you cannot use definitions across '
the board, and so there is going to be a different
interpretation. For example, what it means to be homosexual or
bisexual in different cultural contexts may be different, but the
virus doesn’t care. The only point is change behaviors and get
people to understand what behaviors are high risk, it matters not
whether or not they declare themselves in some particular way. I
think that that is something we have to wrestle with because we
all have notions of what it means to be in one category or
another. I think we have to throw that out. That is what
ownership, and minority groups controlling the problem really
means. Then the issue gets defined in the way that works.

CHAIRMAN WATKINS: Dr. Lee?

DR. LEE: I wanted to call on Paula Van Ness. She
walked out of here. Is there somebody else to ask questions? I
hope she comes back. She said that she was going to come back in
5 minutes.

CHAIRMAN WATKINS: Dr. Walsh?

DR. WALSH: I don’t have any questions, only the
comment that your testimony, along with the testimony of
previous panels has emphasized once again that AIDS has drawn a
great deal of attention that this is not purely a health
problem. It is a societal problem, just like IV drug abuse is a
societal problem, just like long-term care for the elderly is a
societal problem. I think we are in a whole new era with AIDS
as a way of taking a look at our health care delivery system and
where this can emphasize both its weaknesses and its strengths.
The comments that are brought up consistently particularly in the
recent period just emphasized this to me a great deal, and I
think have made our task even more difficult. We appreciate your
bringing these to our attention. I just don’t have any
questions. You have all been very clear.

CHAIRMAN WATKINS: Dr. Crenshaw?

DR. CRENSHAW: Did you want to say something?

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CHAIRMAN WATKINS: Please, Mr. Oaxaca?

MR. OAXACA: If I might, Admiral. On a somewhat
positive note, in my experience, being in the advertising,
public relations business and media business in general, what I
find in the minority community, once it is educated, once it is
knowledgeable ofa problem, of an issue, it is responsive, and
in some ways more responsive than mainstream America. They are
not as jaded by so many people romancing them. They don’t have
as many media outlets chasing them, and if we can get the
message to them, I think they will respond, perhaps in greater
measure than most people who are just sick and tired of the
commercials and radio and television blaring at them all day and
all night. And so, in a way that is an important aspect of
this, that if we can get clear messages as Ravinia talks about,
if we can communicate these very complex kinds of potential
situations to not only that 15 or 20 percent that may be gay or
bisexual, and I don’t know what the percentages are. In our
Hispanic community we now have 80 percent that are at risk, and
once that is understood, there will be a response, I assure you.

CHAIRMAN WATKINS: Dr. Crenshaw?

DR. CRENSHAW: I would just like to comment, again,
after thanking you for being here and sharing your views with us
that we seem as a society to have a repetitive pattern of
allowing minority groups or ethnic groups to be the previews of
disasters to come, and often not responding rapidly enough. One
of the few positives hopefully of this AIDS epidemic will be that
we cannot afford to wait and watch, and must look at any of the
communities that are less disadvantaged than others as so much a
part of our society that we respond in time because I don’t think
we have got a real good track record of doing that. Thank you.

CHAIRMAN WATKINS: I will open it up for follow-up
questions?

DR. LEE: May I slip in here now? Originally when
this Commission was put together, one of our ideas was an
advisory committee of PR people and press and media to try to do
some sort of organized program of the type that Mr. Oaxaca has
been talking about. This was put on hold because there was
disagreement about our particular role in that regard, but we
have Paula Van Ness here with us is Director of AIDS Information
and Educational Programs at the Centers for Disease Control. She
has listened to you. I wonder if Ms. Van Ness has any comments on
how this type of thing could be organized and put together, and
do you agree that some money has to be committed because people
this morning told us the exact opposite. Would you like to say a
word?

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CHAIRMAN WATKINS:: Could. you come up to the panel
table so that we can record the comments, please, Ms. Van Ness?

Ms. Paula Van Ness, Director of AIDS Information
Education Program, Centers for Disease Control.

MS. VAN NESS: Thank you. I do have some thoughts on
the subject, much in a way to echo what the panelists have been
saying during this time. The use of the media is an important
adjunct to what we are doing at the community level, but where
real behavior change takes place is at that local level where
there are the kinds of interactions that media programs support.

We have been making a very strong attempt to address
minority concerns through our work in the media in developing
special materials. By no means have we done a complete job, and
there is a great deal more to be done. I think your idea of
convening a panel of experts is one that we have found to be
very helpful. We have tapped into some of the great geniuses of
our day in terms of use of the media, looking at campaign
strategies, looking at ways that we can develop materials that
will have an impact. We are committed to continuing to do that,
and I don’t know that there is a necessity for convening another
kind of panel as you are speaking about.

DR. LEE: If cDC is willing to function in a sense
that is satisfactory to these people, and June Osborne even
brought up the TV theme, "Be all that you can be," and there are
some very inventive minds out there, certainly in the
advertising world. I would, personally, sure like to see
somebody pull it off.

MS. VAN NESS: We see it as our charge. We are doing
what we can do within the limits of our resources. I can
guarantee you that there is more that we can do, but to do more
requires more resources. We stand ready to increase our effort
and to continue to tap into the creative kinds of genius and the
technical knowledge that people have throughout ethnic minority
communities and community-based organizations that service other
specialized populations in order to make this work.

DR. LEE: For the community that Ms. Hayes-Cozier has
talked about, it seems to me you could reach some of these kids
and so forth with some beautiful types of spots on an intensive
national basis that would be very specific. Do you have anything
to contribute to that, sir?

MR. OAXACA: I would like to make one comment. I
don’t know who is on your panel.or advisers that you have now,
but I would appeal that this calls for a partnership of not just
media people. There are a lot of media geniuses, and a lot of
really sharp people on Madison Avenue who can sell a new serial

243

 

 
 

 

or a new soap or a new car or convince us to buy a Japanese car
or whatever. What we are talking about here is a need to
combine, perhaps for the first time on such a serious problen,
the scientific and technical knowledge that is coming out of the
research community, coming out of our educational system with
those people who know how to get the message out, That kind of
partnership has to be an ongoing partnership. The third
component which I think is sort of new is the tie-in to that
community-based organizational network that exists in this
country, serving many different kinds of people with different
ethnicities, with all different kinds of problems. It is a very
complex thing, and it is very easy to just say, "We are going to
turn it over to Agency X, and we will put an advisory group over
them, and that way we will track to make sure the right messages
are going out." It calls for a very localized approach, I think
even in the media arena. As a minimum to have regional
operations, to have regional agencies. I think to have
minority-owned agencies who have a different way, whose
specialty is dealing with minority communities and not
necessarily believe that a J. Walter Thompson or Mozelle Jacobs
or what have you can coordinate and tackle this job. It is more
of a regional problem than it is a national problen.

MS. VAN NESS: We couldn’t agree more, and we are
working as best we can with community-based organizations, with
minority-owned advertising agencies, with people from the "
sciences, from academic institutions and across the board. That
while we have made some progress there'is much more yet to be
done and many more people. An opportunity like today brings
other people to the attention that we can begin to draw on.

MR. OAXACA: We are out there on the other side of the
Mississippi.

MS. VAN NESS: That is where I come from. So, I know.
CHAIRMAN WATKINS: Yes, Ms. Gebbie?

MS. GEBBIE: We have asked other times for examples
that might be provided, not here at the table but at a later
time, but I would be particularly interested if any of you know
of a health-related campaign where we have melded some kind of
national slogan or image with local events. I was intrigued
with the idea of the cutout in the drug store that matches the
logo you saw on TV, and I am certainly aware of that in other
areas, but I have limited awareness of successful examples of
doing that in health-related arenas. And any sample materials
or descriptions of such campaigns in any health-related area
that you could bring in that could be illustrative of what you
think could be helpful around HIV, I would, like to see, and I
think it would be helpful to the panel.

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MR. OAXACA: Remember the March of Dimes in polio,
Franklin Delano Roosevelt? I am dating myself, but there was a
national campaign that I remember as a kid seeing the little
crippled kids giving your dime. You would see them in drug
stores, grocery stores, and it worked. I think we beat polio.

MS. GEBBIE: As you say that, I can think of several
rooted in voluntary associations that pulled that together from
their own -- I think of the Heart Association, but not ones that
mixed government and the private sector across the lines that I
think you have been talking about here. So, I would urge you to
look around a little bit, and if you can send something in that
regard, it would be helpful.

CHAIRMAN WATKINS: Let me follow up on that and maybe
try to put it in this kind of perspective. Supposing that the
Congress of the United States, instead of ordering a mailing
campaign, had brought you three together and said, "Look, we
want to put this kind of money against a media campaign in the
United States that will reach the most people, be the most
sensitive to the cultural differences, be sensitive to those
both in and out of the mainstream." Can you bring together the
best minds you have across the board from the media, the
scientific community, all aspects and you design that system?
Some may well be a national mailer. Some may be sufficient
information for regional mailers. Some may be the kind of thing
you want to put into regional electronic media. Some you may
want to put into regional or local cassettes with some kind of
written document. Some you may want to have in a variety of
languages in a variety of formats within that language that
would reach the people. Would you have come up with the CDC
mailer program that you now have?

Dr. Nickens, what I am saying is we have an
opportunity here. You know, the Congress is looking for
answers, too, and I am not down on them. They are frustrated,
and so, there is a feeling that somehow a mailer is going to do
the job. You are telling us at the table today that the mailer
may have limited value, and even the CDC people who come before
us have kind of winced when we talk about the mailer almost as
though it is directed upon them, and it was, in a sense, but
supposing we had gone back to Congress with an alternative. We
have 42 organizations we want to bring together in a conference
with workshops and design an educational process that is perhaps
unique and goes back to Mr. Oaxaca’s concept of what went on with
the March of Dimes in the thirties. I guess what I am saying is
can’t we design the proper program and make a recommendation on
how we might do such a program properly along the lines where we
have plenty of flexibility, plenty of local involvement \where
that seems most appropriate and provide the kind of funding
streams that would go in different directions that CDC could well
control under some kind of an advisory body with the Oaxaca’s and

245

 

 
 

 

 

Hayes-Cozier’s sitting right there helping you out? Certainly we
have sensed this in the Commission so far, and we have had close
liaison with a range of ethnic cultural leaders who can give us
some advice. Jane Delgado has been one of our great advisers in
the Hispanic area so that we don’t do the wrong things, and we
don’t show a lack of sensitivity. We have wonderful Dr. Primm on
our Commission and many other members of the black community on
our staff who do have that sensitivity and have worked on the
Hill in health and education matters for minorities, and so, they
are very sensitive. So, we need to have that kind of a

strategy, it seems to me, and this is something that we could
recommend in our report on the media. Now, we are going to have
more media discussions even this afternoon, as you know. So, we
are not there yet, but you are leading us up to that, and perhaps
we could ask your colleague, Paula Van Ness and you, Dr. Nickens,
maybe to have an executive session with Mr. Oaxaca and Ms.
Hayes-Cozier and sit down and talk about it a little bit and then
let us chat about it to see if out of this we can divine a
concept which might make more sense and not misuse resources that
are already scarce. The best minds here might say that this
isn’t the best way to get the maximum bang for the buck, and let
us go for a different approach that has more flexibility, more
local flavor, more regional flavor, less national direction.

DR. NICKENS: I would be pleased to do that.

CHAIRMAN WATKINS: Would you be willing to join in
with that effort? I am not looking for the absolute final but
just conceptual approach that you might take and the kinds of
people that should be brought together in the planning phase
very early in such a thing. I think the jury is still out on
educating the American people. We have not homed in on it until
today. It is beginning to come alive, in your discussions, and
perhaps how we are jousting with windmills on these mailers. We
already went out with one mailer to the public health people and
others. I forget how many went out, 15 million, I believe. I
think that is a gimmick more than a substantive
well-thought-through strategy, even though the intention is
right.

MR. OAXACA: Another reality that I faced personally
before I started doing volunteer work in Los Angeles, I wasn’t
sure I wanted to be associated with the subject. People would
say, “Has Oaxaca got AIDS or gee I didn’t know he was that kind
of guy," etc., you know, and then you begin to develop some
confidence because you talk to other people who are not
afflicted with a problem and who are willing to play in the
game. I have talked to corporations in Southern California. I
have talked to a few friends I have at the national level. They
don’t want anything to do with the subject. They are in
consumer products. They are doing something nice and clean and
pretty, and it is on television on the Cosby Show or whatever.

246

 

 
 

 

They don’t want to deal with this very nasty subject. They
think that is going to turn off their consumers, and so we have
still got some bridges to cross in getting a lot of the normal
leadership that you might have on something. At least with
polio there is life, there is hope. Here there is no hope
perhaps once the disease is there, and so, we have got to get
prominent people in this country, the politicians, the business
community, the US Chamber of Commerce, the National Association
of Manufacturers, those people who spend money on a lot of
causes who are willing to participate. We have got to bring
them on board that this is their problem, as well. Once you
cross that bridge, once you begin to make some progress there,
then I think that the kinds of things that we have been talking |
about can begin to work. A mailer is just one possible tool,
but you have got to turn on some big machines to deal with this
issue, and frankly, I know what I do with my mailers.

CHAIRMAN WATKINS: I tend to agree, Mr. Oaxaca, but we
have to acknowledge some incredibly important business leaders
in the nation who do have the message. I have been in
conferences with them. You have many in California and large
organizations that have really very progressive thinking on AIDS
in the workplace and what they have done to prepare the way for a
sensitive and compassionate treatment of their employees, When
it happens, they ride right through it beautifully, and those are
well documented. We just had an All-State sponsored forum back
here where you had CEO’s from all over the country, very
concerned about this and trying to get in the act. I agree, it
must go further, and they have a large role to play, but they,
too, as many of us who were ignorant of the scope and depth and
breadth of this disease, they are coming aboard. So, I think now
is the time to inspire that even further, and I think we can do
that with this kind of approach. I could give you the names of
five or six CEO’s who could participate in a collaborative
planning effort to do a better job in reaching out to all aspects
of America, not just into the schools but out of the schools, not
just into the workplace but out of the workplace, and I think
that is the kind of strategy that would be -- that conceptual
strategy might be very valuable. Perhaps even with congressional
participation with very interested people to take the message
back to the Congress to allow the pros to build the media
campaign, give us the incentive to do it, but let us work
together on it to build the very best one we can because we
don’t have a lot of time.

We heard the stories today about adolescents, both the
drug use and sexual activity, sexually-transmitted disease
problems and certainly the kernel of everything you need for HIV
in adolescence. So, those are the kinds of things we have to do
better right now at in getting the message out, and we don’t have
a lot of time to waste another year to find out the mailer only
had 4 percent effectiveness in the nation. That is not a good

247

 

 

 
TY

statistic to get. We should do better front-end planning and
then expect 85 percent effectiveness or something like that.

DR. NICKENS: I would like to make one comment. When
we talk about media and advertising, I am a little
uncomfortable. I think that we have said it, but I would like
to reinforce again that what we are talking about with AIDS is
not the sort of passive message reception that is involved in
deciding to buy Cheerios instead of Wheaties. This is really
profound behavior change we are "marketing," and around behaviors
that people have investments in and about which they are very
sensitive. I think that in that sense with minorities, what we
need is full partnerships, and we cannot have minorities as
passive recipients of something that is created. The
partnership issue is a critical one to make this really fly.

CHAIRMAN WATKINS: If we can get a hardened up version
of what this discussion is from you all, it may give us some
insights on a recommendation the Commissioners would feel
comfortable with and where we could make a major impact on how
we would keep the information flow going. It is not just media,
and I agree with that. It is information flow in a variety of
modems, and certainly the media is a very important one.

Are there any other follow-on questions before we
shift to the next panel? Anyone? All right, thank you very much
for coming before us today. I think you have given us a real
help in one important area that we need to address in our report.

 

Our next panel is a large one on education efforts of
community based AIDS organizations. Mr. Gil Gerald, National
AIDS Network; Charles McKinney, Director of Education, Gay Men’s
Health Crisis, New York; Tim Offutt, Executive Director, Kupona
Network, Chicago; Dominick Maldonado, President, Hispanics United
Against AIDS, New Haven; Jack Stein, Executive Director, HERO,
Baltimore; Mr. Shepherd Smith, Jr., President, Americans for a
Sound AIDS Policy, Washington, DC; Dr. John Holloman, Chairman,
AIDS Task Force, National Association of Community Health
Centers.

I want to welcome you all to the panel. In this panel
I know we have members who have worked very closely with one of
our Commissioners over the last several years, Beny Primm, and
he asked me to please apologize for him for racing out on you.
He really didn’t mean to do that, but he has other commitments
to the President’s Council on Drug-Free America. So, he would
fully have expected to be here. So, Mr. Gil Gerald, Mr. Tom
Offutt and Dr. John Holloman, if you will forgive Beny, then we
can start the hearing today. Thanks very much for being here.
You get him after the hearing.

248

 

 
 

 

‘Our first statement then today, and because there: is a
large panel, if you go much over 5 minutes, you are going to see
me kind of raising up my hand. Try then to wrap up your comments
because we are all caught up in this, and I know that each of you
want to give us your best shot, but I hope it is in writing to
us. We do read those very carefully, and we get a great deal out
of the dialogue. Sometimes we flush out something; that isn’t even
in the first written statement. It is not in a follow-up oral
discussion, but it comes out of the back and forth, and I think
that is where we have made the most money so far. So, if we
could start then with Mr. Gerald? |

MR. GERALD: Admiral Watkins, distinguished members of
the Commission, rather than read from my full prepared text which
has been submitted to you, I will use the brief time allotted to
me to summarize and highlight major points of my report.

. I would like to begin by stating that compared to the
need, there are only a handful of model programs for educating
communities and there remain huge portions of the population
that have only been given the most rudimentary AIDS information.
We must learn from the successes of these few model programs.

Certain challenges relating to AIDS education efforts
are true, regardless of the target population. The term
"education" encompasses efforts to affect the knowledge, .
attitudes and behaviors of individuals relating to both their
risk behavior and their general understanding of AIDS and HIV
infection. , Knowledge does not necessarily mean that an
individual has the attitudes or skills to change particular
behaviors, as we have seen demonstrated in the case of education
around the risk of cigarette smoking. ‘We have, also, come to
recognize that for education efforts to be effective, they must
be specifically targeted, taking into account differences in
culture, language, life styles, educational levels and possible
risk behaviors. The need for targeted education, the array of
educational vehicles and messages, and the controversial nature
of some of the messages, all highlight the crucial role of -

community-based education.

The primary challenge of educational efforts is no
longer one of imparting basic facts about AIDS transmission.
Over 90 percent of Americans now know that AIDS is spread
through sexual contact. Broad media coverage over the past 3
years is largely responsible for the successful widespread
general knowledge about AIDS.

Successes in altering attitudes and behaviors have
unfortunately been far less common. Successes in efforts to
change behaviors can be found in community-based efforts
targeted at gay men, particularly white gay men. The January
29, weekly morbidity and mortality report of the Centers for

249

 

 
 

 

/
Disease Control contrast rates of infectious syphilis among
heterosexuals and homosexuals in 14 localities across the
country. Changes in these rates are markers for behavioral
change. Male heterosexuals recorded better than a 75 percent
increase, while homosexual and bisexual men report a 34 percent
decrease.

Education efforts in some major metropolitan areas
have lowered the incidence of HIV infection to 1 to 4 percent
among gay and bisexual men. Unfortunately, however, the
successes, also, show how far we need to go in this area.
Significant populations of individuals at high risk are hardly
being addressed or not being addressed at all. These
populations include those in rural areas, the chemically
dependent, black and Latino gay and bisexual men, individuals
with low education, homosexual and bisexual adolescents and
bisexuals and minority women.

In addition, the problem of recidivism is very real.
Education is, also, crucial to efforts to curb the epidemic of
fear and anxiety. Community-based educational efforts are best
positioned to bring home the message that AIDS is an issue that
all communities must address, hopefully with compassion. How
people with AIDS will be treated by their community is closely
tied to the nature and content of AIDS education activities.

Mr. Chairman, there is no one right way to provide
AIDS education. Approaches must be varied and targeted to the
specific populations being addressed. Reinforcement of
educational messages is essential to ensure maintenance of any
behavior change. AIDS is a health concern that places stresses
on many parts of our society. Education both through the
message and through how communities come together to develop the
message, provides a crucial vehicle for bringing home the fact
that this disease is indeed everyone’s concern.

Funding for education efforts must be increased /
substantially across the board, particularly federal funds for
community-based education. Funds should be distributed directly
to community-based agencies. State health departments, if they
are receiving funds for community-based efforts should receive
funding only upon proof of working in cooperation and with the
involvement of community-based agencies in their state.

The distribution of resources and funding of
community-based agencies should, also, reflect a high incidence
of AIDS within certain communities and among certain population
groups as well as an assessment about communities at higher risk.

Now, what I mean by this last statement, for example,
there are communities with low HIV seroprevalence among IV drug
users. We have parts of the country, the West for example,

250

 

 
 

 

—

—"

where you have high incidences of IV drug use but low
seroprevalence rates among this group. That is a place where we
need to put some investment in prevention. Thank you, sir.

CHAIRMAN WATKINS: Thank you, Mr. Gerald.
Dr. McKinney?

DR. MCKINNEY: Mr. Chairman, members of the
Commission, my name is Charles McKinney. I am Director of
Education for the Gay Men’s Health Crisis in New York. Thank
you for your interest in my testimony regarding the educational
efforts in community-based organizations in the fight against
AIDS.

Gay Men’s Health Crisis, Incorporated, is a
conmunity-based organization serving the five boroughs of New
York City. It is one of over 300 community-based organizations
that the National AIDS Network (NAN) which provide support
services and education in local communities across the nation.

Gay Men’s Health Crisis, (GMHC), incorporated in 1982,
represents the first organized effort of a community to defend
itself, in the absence of public health leadership, against the
dread disease, AIDS. In the past six years it has provided
direct social support to over 6000 people with AIDS, and it has
altered the course of the epidemic in New York City through its
educational initiatives to halt the sexual transmission of the
HI virus among gay and bisexual men.

‘AIDS is preventable. This has been demonstrated
clearly in the gay community. Surveillance statistics from both
coasts document reduction in the incidence of
sexually-transmitted diseases and the rate of HIV seroconversion
within the targeted populations of AIDS prevention programs.
Simultaneous increases in the incidence of sexually-transmitted
disease and the rate of HIV seroconversion have occurred within
the populations that were not beneficiaries of aggressive risk

reduction programs.

Empirical evidence has been established as well, by
CMHC and others, to confirm the effectiveness of education as an
AIDS prevention strategy among gay and bisexual men. The
validity of inferring generalizations from these findings that
extend to other populations, or to the public at large, is not
known.

In the absence of a vaccine, and in the presence of
the only measurable success in controlling the epidemic,
education is perceived to be the most positive public response
that is available in the face of an epidemic that progresses
exponentially without marked deterrent. The inherent danger in

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this logic is to embody education with curative power outside the
context in which it has been found to be effective in reducing
the risk of HIV infection in the gay community.

Education as a life-saving strategy in the fight
against AIDS is more than a public service announcement
recommending sexual abstinence, saying, "No," to drugs or using
condoms. It is multifaceted, omnidirectional, persistent,
repetitious and immediate. It is round the clock, in the
streets, in recreational facilities, churches and synagogues,
social clubs, homes, schools and local super markets. It is
where the people are, whenever they are there. It is
communicating in a common language and level of literacy. It is
non-judgmental. It is sensitive to cultural differences,
patterns of speech, rituals and mores of diverse populations
that make up the community. It is "hands on." It is "no holds
barred". It is "grassroots", Success in the gay community has
not been achieved from a distance.

This is the AIDS prevention education that has worked.
It is beyond the scope of the established Public Health Service
to deliver. It is a model the community-based organizations
have developed over the past six years of fighting to contain
the virus.

By the fault of the Federal Government,
community-based organizations have been the vanguards in the
fight against AIDS in the United States. They have mobilized a
volunteer army of seasoned veterans attached to the 300
community-based organizations of the National AIDS Network.

Gay Men’s Health Crisis brings to that network a force
of over 2000 committed volunteers who provide direct services to
New Yorkers with AIDS and who provide educational and
informational support to 14 million other Americans who live and
work in and around the city of New York.

The American people are eager for information and
leadership. This is illustrated profoundly in the demands for
services directed to Gay Men’s Health Crisis by our non-gay
community. Despite a selection of AIDS hotlines available to
New Yorkers, the GMHC hotline is providing reassurance,
education, and referral services to nearly 7000 callers each
month. A large and increasing percentage of our calls are from
women and others of the non-gay community, who perceive GMHC as
the most creditable source of AIDS-related information.

Concurrent with our hotline activity, our peer
counselors are staffing information tables in the streets, as
many as 70 a month, at neighborhood and ethnic events, church
functions, health fairs, the post offices, the parks, the piers

252

 

 
 

 

and other high traffic areas where New Yorkers congregate for
business, education, and social and recreational activities.

Off the streets we are conducting risk-reduction
programs in a Wall Street sauna, a social club in Harlem, and
for the theater and dance companies of Broadway shows between
the matinee and Wednesday evening performances. We are
consulting for the American Management Association on "AIDS in
the Workplace", and on an AIDS curriculum for teenagers with the
New York City Board of Education, and a nationally distributed
Scholastic Magazine. We are training counselors for! the
Coalition for the Homeless and for Covenant House, so that they
can discuss AIDS risk reduction with their counselees. And we
are providing AIDS educational literature to the Police Academy,
16 correctional facilities and the 202 public libraries of the
New York Public Library Systems.

Our staff and volunteers are conducting educational
interventions to prisoners on Riker’s Island, and to recovering
intravenous drug abusers in resident treatment programs. We are
presenting to the Board of Directors of the Metropolitan Opera
Company and are providing the only AIDS education and training
available to the professional staffs of 280 community-based
mental health agencies serving the five boroughs of New York
City. We are presenting to the Narcotics Squad of the New York
Police Department and to the Criminal and Civil Court Justices of
New York State on the psychosocial aspects of AIDS, and we are
reviewing the medical literature and distributing relevant
updates on treatment therapies to 300 physicians in New York who
are providing medical care to New Yorkers with AIDS.

It is this grassroots effort that holds the greatest
potential for success in controlling transmission of the HI
virus and containing the AIDS epidemic. The crisis of
confidence that exists between a people that has witnessed the
ravages of AIDS and a government that continues to debate its
epidemic potential in the fact of 50,000 casualties will not be
eliminated by the most imaginative bureaucratic response.

Effective intervention to contain the virus will
combine the resources of government with the experience,
expertise and manpower of its grassroots constituency. We ask
that the Federal Government support the initiatives of
community-based organizations by providing the necessary
resources to maintain and expand their efforts in behavioral
research and risk reduction education.

The Federal Government by its non-participatory stance
in the fight against AIDS, has created the major obstacle
impeding the educational efforts of_ community-based
organizations across America. Characteristic of its posture is
the political pandering to special interests that are taking

/
253

 

 

 
 

OO

advantage of the health crisis to disadvantage those stricken by
the disease and to condemn and penalize organizations that have
achieved the only success in containing the epidemic.

We implore our government to follow the
recommendations of the Surgeon General of the United States and
the most learned of our statesmen from the scientific community
and the Public Health Service in defining AIDS as a public
health issue and the HI virus as a public health emergency.
Before and since its incorporation in 1982, Gay Men’s Health
Crisis has advocated for national leadership in the fight
against AIDS. We have testified before Congress and committees
of the Congress to heighten awareness of the impending crisis,
to increase funding for medical research, and to urge the
Congress to accept a leadership role in the national emergency
presented by AIDS. The response of government has been meager.
In the absence of national leadership, that role has been imposed
on GMHC and other respected organizations of the National AIDS
Network. We have shared our experience with community
organizations throughout the United States and have shared our
expertise with public health officers representing more than a
dozen countries of the Western World.

This is a role that has been thrust upon us, and it is
one that is the responsibility of national leadership. We ask
that the President and the Congress of the United States accept
the responsibilities for leadership in the fight against AIDS in
America, and aggressively confront the national emergency that
AIDS presents.

 

Mr. Chairman, members of the Commission, this
concludes my testimony.

CHAIRMAN WATKINS: Mr. Offutt?

MR. OFFUTT: Thank you, Mr. Chairman. Mr. Chairman,
members of the Commission, on behalf of the Board of Directors
of the Kupona Network, I would like to thank you for this
opportunity to testify before you today on the issue of AIDS
education, specifically within the black community.

Mr. Chairman, the Kupona Network came into existence
back in October 1985, out of a concern over the lack of
educational activities aimed at the black community about the
AIDS epidemic. Because of the lack of racial and cultural
sensitivity on the part of many of the predominantly gay white
male AIDS organizations working on this issue for the past 5
years, most efforts to educate the public about AIDS and risk
reduction have not had a significant impact on the black
community. Many in the Black community still believe that AIDS
is a gay white male disease which they are immune to, if they
stay within their own community. Others see it as a judgment

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<<

against those who have engaged in, quotes, "sinful" or, quotes,
"immoral behavior". Some see the epidemic as a conspiracy
against the black community by those who harbor racist attitudes
towards it, and still others see it as yet another burden that
has been placed upon the backs of black people who are already
overburdened by unemployment, poor housing, lack of educational
opportunities and substandard health care. Many feel that blacks
are being blamed for the origins of this epidemic. These
perceptions are real, and they are barriers to effectively
educating the black community and changing risky behavior.

Mr. Chairman, until recently, it has been extremely
difficult to interest national black organizations, such as the
National Urban League and the Southern Christian Leadership
Conference or for that matter their local affiliates in the
impact that the AIDS epidemic was having on black people. Like
so many in the black community, these organizations found it
convenient and expedient to ignore the problem in hopes that it
would go away. It is essential that organizations involved in
educating the black community about AIDS be prepared and capable
to carry out this task. What I mean here is that
community-based organizations wishing to do AIDS education must
be able to relate to all segments of the black comnunity,
including those members who identify themselves as being
homosexual, bisexual, as well as those persons who do not
identify with their sexual behavior.

 

The black community must be given permission by those
who seek to educate her to openly discuss some deeply personal
and very sensitive issues related to patterns of sexual behavior
which directly affect HIV transmission. Clearly such permission
can only come from within the community itself. When the Kupona
Network first started our educational efforts, we knew that it
was of vital importance that the black community see other black
people giving out this information and being concerned about this
issue. We were acutely aware of past attempts at educating the
black community about AIDS which were undertaken by AIDS
organizations outside of it. These efforts, for the most part
were inept, superficial and insensitive to black people and their
perceptions about this disease.

Mr. Chairman, I am happy to state that the efforts
made by the Kupona Network with the support of the city of
Chicago Department of Health and the Illinois Department of
Public Health are beginning to have an impact on the black
community of Chicago. While we recognize the fact that our
efforts have been small in comparison to the size of Chicago’s .
black population, I feel that we have begun to have an impact on
some important and influential sectors of our population, and
this would include the educational system in the city of
Chicago, as well as the Illinois Department of Children and

255

 

 

 
 

 

Family Services which provides care to many black and Hispanic
children in the city of Chicago.

I, also, wanted to add that Kupona Network recently
was able to do an hour-long program on AIDS in the black
community on the No. 1 radio station and the city of Chicago.
They were willing to preempt some prime time driving hours to
air this program, and we were flooded with calls as a result of
this. I believe our listening audience at that time was about
600,000 listeners.

Mr. Chairman, I would be remiss if I did not comment
on the historic role that the black church has played within the
black community. The Kupona Network has maintained all along
that the black church must be involved in educating the black
community about AIDS and to this end a few months ago we saw the
establishment of the Chicago Black Ministerial Task Force on AIDS
which currently numbers about 35 clergypersons from a variety of
denominations who/are actively involved in both recruiting other
clergy members to be involved in this effort and, also, providing
services within their own churches.

The Chicago Department of Health under the leadership
of Commissioner Lonnie Edwards has been a strong supporter of
our efforts and the efforts of other minority grassroots
organizations who are working on this issue. They have been
invaluable in assisting us, both in terms of identifying
resources to be used in our educational programs and in
recognizing the necessity for a community-based response to this
epidemic. —

In summation, Mr. Chairman, I would like to put forth
four recommendations; No. 1, that the Federal Government needs
to increase its level of attention and involvement concerning
the issue of AIDS in the black community; No. 2, that the
Federal Government needs to follow the example of our European
counterparts in developing a comprehensive federal approach to
addressing the AIDS epidemic, an approach which does not merely
look at issues of seroprevalence; No. 3, that the Federal
Government should make every effort to support the development
of a community-based response to the AIDS epidemic, particularly
in minority communities and, also, that the Congress and the
White House increase the level of funding to the Office of
Minority Health and that OMH be empowered to make grants directly
to community-based organizations. Thank you

CHAIRMAN WATKINS: Thank you very much, Mr. Offutt.
Mr. Maldonado?

MR. MALDONADO: Good afternoon, Admiral Watkins and
members of the Commission. Before I begin my presentation and

256

 

 

 
 

 

about Hispanics, I feel there is something I, must share with you
that is not part of my presentation as it may have an impact on
it.

Last Monday, the twenty-second, I accompanied one of
my best friends, a member of this organization to the doctor.
The same day he was hospitalized. On Tuesday he was diagnosed
as having full-blown AIDS, and on this past Monday he passed
away. I planned to cancel my presentation. However, during my
7 days at his bedside, he asked me to come here to make the
presentation, and that is the reason that I am here now. I ask
you to please bear with me as I read the statement.

I would like to begin by thanking you for the
recognition you have given to Hispanos Unidos Contra SIDSA/AIDS
by inviting me here to speak with you. I hope my comments will
be helpful, as you try to determine the ways in which the
Federal Government can best promote community-based AIDS
education programs. It is difficult, perhaps, for people whose
first language is English and native culture is US to appreciate
the barriers Hispanics encounter every day in this country. I
come from New Haven, Connecticut, where there are roughly 12,000
Hispanics in a city of 130,000. Most of us are of Puerto Rican
origin, and half of us have income levels below the poverty line.
Hispanic women in New Haven suffer a higher rate of infant
mortality than any other group because seeking prenatal care is
not common to our culture. When you introduce the AIDS virus
into this situation of poverty, language barriers and cultural -
obstacles to care for, you have trouble. Currently 17 percent
of all the Hispanics with AIDS in New Haven are Hispanic, and the
percentage keeps growing. Up until last June when the Coordinator
of the Mayor’s Task Force and I did the ground-breaking work to
organize Hispanic Unidos Contra SIDA/AIDS, there wasn’t a single
Hispanic organization in the state devoting a large part of its
energy to educating Hispanics about AIDS. Although we had a
hard-working AIDS project in the city, they didn’t have Hispanic
educators, but even if they did have Hispanics, the prevailing
lecture format would have not been effective. In addition, all ..
of the available AIDS materials in Spanish distributed by the
State Health Department were translations from a complex and
visually unappealing text.

All of these facts added up to one thing. We needed
to get together and do it ourselves. We needed community people
with energy, ideas and commitment to develop our materials and to
get out the message about AIDS in a culturally sensitive way.

So, we got together. Before I tell you about what we have done
and what we are doing, I want to tell you about who we are as
individuals and as a group. I believe this information is very
important because we understand it as the key to our success so
far. When Sher Horosko and I organized the group in the
beginning, we were very careful to choose community people and I

257

 

 

 
 

nO

emphasize community. This does not mean that we went to the
heads of all the Hispanic agencies, the pastors of all Hispanic
churches and the PHD’s in the academic community. It means we
sought out people who had their fingers on the pulse of the
community in all its variety. These people included individuals
who work with IV drug users; people who work in the prison system
as ministers or probation officers; individuals who work with
Hispanic teens; individuals who work in clinics serving
Hispanics; pastoral workers; social workers and teachers. These
people are not afraid to roll up their sleeves and do whatever
needs to be done.

We have found it very important to the group’s
empowerment to identify and acknowledge the unique contribution
each individual makes to Hispanos Unidos Contra SIDA/AIDS. For
instance, two women members of our board are active in the
Pentecostal Church which is a significant source of authority in
our community. It is clear that these two women are precious
links to a religious community we must talk openly with if we are
to get anywhere with our AIDS education efforts.

Other members of our group have experience with IV
addicts. These people help establish connections with the drug
users who designed the brochure to reach out-of-treatment
addicts. In Hispanos Unidos Contra SIDA/AIDS, we have tried to
tap the connections and experience each of us brings to our
collective effort.

 

I would like to share some highlights of our work with
you, and as I do, I would like to ask you to keep in mind that
we did all this with absolutely no money. To begin with, before
we did anything, we decided to draft a plan. Having our
direction clarified early on has helped us to stay in focus. We
visited all the Hispanic services agencies in the city to give
them basic information about AIDS. We gave two training
sessions to members of Hispanos Unidos Contra SIDA/AIDS in the
Hispanic Community. At these sessions we show a video that
gives basic information about AIDS and we do role playing
involving the whole group so they can get practice in responding
to various situations. In one role play we acted out a church
meeting in which there was a strong disagreement as to whether a
person with AIDS should be allowed to remain in the congregation.
We set up AIDS information tables at Hispanic Summer Festivals
and walked through the crowd with AIDS information.

In view of the lack of materials, Hispanos Unidos
developed two brochures in Spanish, one designed to reach IV drug
users with information about clean needles and condoms, the other
designed to reach the general public. All of the materials were
pre-tested on at least 20 people from the Hispanic community, and
you will find these materials in your packet. You will, also,

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<<

find two brochures in English which I am happy to say are
translated from the Spanish rather than the other way around.

At the end of October for AIDS Prevention Month, we
held a March for Life against AIDS that over 150 people
attended. Following the march, we went out into the
neighborhood, going from door to door with AIDS information.
People were more than willing to talk with us. Although our
main focus so far has been educating our own people about AIDS,
we have felt an intensifying need to involve ourselves in issues
of care for Hispanics with AIDS.

We have just completed three sessions on psychosocial
and cultural aspects of care for Hispanics people with AIDS that
was given by a Hispanic psychologist with expertise, both in AIDS
and in counseling Hispanics. Our plan is to train a corps of
volunteers who will be companions to the people with AIDS in our
community. We, also, intend to begin a support group for
Spanish-speaking people with AIDS, ARC or HIV seropositivity
within the next few weeks.

As the months go on and each of us finds that we know
someone with AIDS, the issue of culturally sensitive care for
our people becomes more crucial. We have done all this with
total volunteer energy. Right now we are trying to raise the
funds we need to get a little store front going, and we are
trying to hire an executive director who can save our energy. I
hope you are wondering why we haven’t got any money from the
State Department of Health. Despite the fact that the
legislature allocated $2.7 million to do AIDS work, not one penny
has come to Hispanos Unidos Contra SIDA/AIDS. The State Health
Commissioner hired a minority consulting firm from Silver Spring,
Maryland to do community-based education with blacks and
Hispanics in three Connecticut cities. They spent the first
5-1/2 months and $365,000 on developing their plan. The majority
of that money went to Maryland to fight AIDS in Connecticut.

The Mayor’s Task Force on AIDS has written three grants for us,
just so we could get going. The band is playing on and on in
Connecticut while people are dying. ;

 

What can the Federal Government do to fight AIDS that
will really make a difference? It can fund community-based
organizations with energy and commitment. Organizations have
the trust of the people and the respect of the community. This
will get you the most for your dollar because whatever comes
from the people is what the people need. It seems to me that
the United States Conference of Mayors has done well in funding
programs that are both innovative and community based.

All we need is continued funding for these programs,
and we will be doing well. In terms of reaching the minority
communities, in particular, the Federal Government can encourage

259

 

 

 
 

TO

strong working ties between local AIDS groups that are often
white and middle class and minority agencies. There could be
more collaborative efforts that stress the role AIDS groups can
play in helping minority organizations develop their own AIDS
action plans. Hispanos Unidos Contra SIDA/AIDS and the Mayor’s
Task Force on AIDS work very closely together, and this has been
a source of strength to us both.

Finally, the Federal Government can help
community-based organizations survive the big state politics of
AIDS. You can fund us when our State Health Department won’t.
You can help us with technical assistance. You can give us some
of the tools we need to fight AIDS in our community. Thank you
very much.

CHAIRMAN WATKINS: Thank you very much, Mr.: Maldonado,
and we very much admire your willingness to come forth today and
bring that important message. It rings well with the sensitivity
that the Commission has, and we have listened very loud and clear
to those most affected by the virus, and so, we thank you for
bringing that message to us today. We need to remind ourselves
as we discuss bureaucratic issues that we don’t forget the human
beings at the end of the line here which should be our principle
and continuing focus. So, we thank you for bringing that to us
today. Mr. Stein?

 

MR. STEIN: Thank you. Admiral Watkins,
Commissioners, I would like to extend my appreciation for
inviting me here today, and I could not leave without, also,
recognizing the Commission’s activities over the last several
weeks in terms of effecting some change because change is what
this entire epidemic and stopping it is all about. I will keep
my remarks as brief as I can. I would like to address three
major areas, No. 1 how I see the role of a community-based
organization with respect to AIDS educational efforts; two, to
take a brief look at some of the impediments that have gotten in
our way to do some of the work that we would like to do and feel
we need to do more, and thirdly, some recommendations for some
further action.

Briefly about my organization, it is entitled Health
Education Resource Organization and commonly goes by the term
HERO. It is a Baltimore-based AIDS service organization,
however. HERO provides services for the Metropolitan Baltimore
area, as well as in Montgomery County which is the county
between DC and Baltimore and, also, the western part of
Maryland.

We have been in existence for the past several years;
1983 is when we began, and we currently provide a variety of
services including targeted outreach education to at-risk
populations, general community information and referral, health

260

 

 

 
 

 

care provider education and direct patient support and
assistance. We are, also, responsible for the development of a
variety of educational materials that are distributed nationwide
and throughout the world, and you have some samples of that as
well. Many of the remarks that I was planning to say have
already been addressed, and so, I will try to keep my remarks
succinct.

With respect to the role of the community-based
organization in HIV prevention and education, I think I could
summarize them into nine major points. First of all, AIDS
service organizations like HERO have really been the first
responders in this epidemic. By that alone, I think we often
view ourselves, rightly so, as the experts in terms of our
on-the-job experience over these last years. So, perhaps what
we did not have from our educational backgrounds we learned
literally by doing. Second, AIDS service organizations are
composed of individuals who are working with and by people most
affected by the epidemic. Clearly the commitment is there in
terms of our desire to do this type of work. Third, the use of
volunteers is critical. There cannot possibly be enough funding
and resources to accomplish what we need to accomplish without
the benevolence of the community. We currently have a volunteer
pool of over 400 individuals of very diverse nature.

Fourth, AIDS service organizations like HERO have
begun to recognize the need to expand their initial target
populations. We tend to view AIDS as a moving target which
means we need to expand the populations that we work with.

Fifth, AIDS service organizations are in key positions
to provide targeted educational programs that require culturally
sensitive and sometimes controversially viewed messages related
to life style activities. Often these understandably cannot be
conducted by a health department.

Sixth, AIDS service organizations are important
clearinghouses for collecting and disseminating information
related to HIV-related issues affecting communities. HERO, for
example, operates for the State Department of Health and Mental
Hygiene in Maryland the Maryland AIDS Information and Referral
Hotline.

Seven, AIDS service organizations are in excellent
positions to assume responsibility for outreach programs that
impact on the diversity of service providers. For example, we
currently operate a street IV drug outreach program where we
have hired former drug abusers who are currently trained and
educated and supervised by our staff and are out tthere in the
streets on a daily basis doing outreach on street corners.

261

 

 

 
 

 

Eight, AIDS service organizations have been very
effective in encouraging coalition building within the community
in working with existing service providers, and lastly, AIDS
service organizations are excellent points for directed fund
raising efforts to increase the public, as well as the private
sector funding devoted towards HIV prevention education.

In terms of the barriers, unfortunately there have
been many of them. I am sure you have heard a lot of them at
this point. For us we have experienced, no doubt, one,
widespread public denial, that is a given; two, initially some
strong resistance by health departments and other governmental
agencies; third, certainly inadequate funding. We always hear
about inadequate funding. Ironically, however, as funding began
to increase and programs such as my organization began to be
funded, lots of money was in a sense dumped into our laps
without a clear understanding of how it was going to be
monitored, without, also, a lot of good administrative support
to keep it fiscally accountable which in a sense sometimes sets
us up.

Fourth, a lack of a state plan, and until most
recently, and I need to give credit to our State Department of
Health and Mental Hygiene -- until most recently there really
wasn’t a state plan in which we could help design our own plans
for future needs.

Fifth, limited available research data on the
effectiveness of prevention and education strategies have made
it very difficult for us to design a program when, in fact, we
are really going by the gut.

Sixth, inadequate funding for evaluation of programs.
Many of the programs that we have operated these last 5 years,
we can only say that we think they are working as opposed to we
can say that we know they are working because we really have not
had strong evaluation components built into them due to funding
issues.

And lastly, AIDS service organizations’ roles have
become challenged over these last several months, last several
years for a number of reasons. AIDS is now becoming a very
popular issue for groups to become involved with. There are
consulting agencies all over our state, all over our country who
are now beginning to go where the money is, and in fact, we are
being challenged because of their expertise and their ability to
respond to requests for proposals. Even from the federal level
we are, in a sense not able to respond to several federal types
of grant money because of specific requirements as an existing
agency that we do not hold.

262

 

 

 
 

 

My recommendations are rather brief. I would
certainly recommend highly a comprehensive national strategic
plan to prevent HIV transmission in order to involve the local
level. This plan, no doubt, needs to acquire the
acknowledgement that HIV prevention education is based on
permanent change of the most fundamental and intimate human
behaviors. These are not one-shot deals. We are talking about
changes on an individual level, professional level, as well as
on a societal level. Second, I would certainly recommend that
all requests for federal funding to conduct prevention education
should include the provision for active participation of the AIDS
service organizations in them, build it right into the proposal
process.

Third, states must be encouraged to include
representatives from AIDS service organizations not only in the
product they create but in the actual process of putting it
together, the planning process. Fourth, we need technical
assistance. AIDS service organizations need this in order to
enhance their ability to appropriately respond to the increased
demands placed on the community by HIV. This technical
assistance may take many forms. It may take the form of
management. It may take the form of fiscal accountability and
reportability. It may take the form of technical assistance in

terms of research.

The last two points are sixth, the establishment of
community-wide coalitions are critical and need to be
encouraged, and lastly, with respect to development of
prevention education material, AIDS service organizations no
doubt need to be accountable but accountable on a local level
rather than on a federal level in order to simply adapt to what
the atmosphere is in the local community. I thank you for my
comments.

CHAIRMAN WATKINS: Thank you very much.
Mr. Smith?

MR. SMITH: Mr. Chairman and members of the President’s
Commission on HIV, thank you for the opportunity to testify on
behalf of Americans for a Sound AIDS Policy, an organization
actively involved in educating the general public, health care
workers, businesses and minority segments at the present time.

In the interests of time, I will not present my entire
prepared remarks. With me today is Michelle Fieldsharl our
minority projects coordinator, Anita Mooreland Smith, our vice
president for communications and Jeff Collins, director of Love
and Action, the national AIDS organization we support which
gives comfort to people who are infected with the human
immunodeficiency virus.

263

 

 
 

 

DR. LEE: Could they stand up, so that we can see
them?

MR. SMITH: Surely. The focus of these hearings is
prevention and education, and one cannot imagine our stopping
the spread of this epidemic lacking the discovery of a cure or
vaccine without each of these important elements. At present
approximately 1/2 of 1 percent of the American public is
infected with the HIV, leaving: 99-1/2 percent uninfected. It is
our obligation to see that the uninfected portion of the
population does not become infected while dealing
compassionately with those who are unfortunately HIV positive.

As a citizen’s organization dealing with AIDS, we
represent largely the uninfected public. I must say that there
is still a great deal of confusion about AIDS even as to what it
is. Is it infection with the virus alone or infection with the °
virus including some symptoms? As Voltaire said, "If you wish to
converse with me, define your terms." In order to converse with
the American public and educate them, we must define our terms.
It is our hope that AIDS will be defined as HIV positive, with or
without symptoms. We know of no other sexually-transmitted
disease once in the body which requires symptoms to qualify as
being a disease of the body.

Another important point in educating the general
public about AIDS is to remember that for most Americans who do
not participate in promiscuous sexual contact or IV drug use,
they are not at great risk of contracting the virus. They
relate to risk behavior much more than they do to risk groups, a
term we find unnecessary and misleading. Because the most
likely modes of transmission for the virus, sex, IV drug abuse
and perinatal transmission are the least likely modes of
transmission for a majority of Americans, the least likely modes
therefore become the most important to them. This is the
general public we are talking about. Consequently, we think it
is wrong in any educational effort to dismiss discussion of
uncommon methods of transmission. While they should not be
emphasized, they should not be omitted either.

We agree with the premise that AIDS is generally
difficult to contract. We feel presentations regarding
transmission should relate to degrees of risk, and when we
arbitrarily draw a line by the term "casual contact," we damage
our credibility each time it is crossed. Beyond those basic
definitions, the public is, also, confused by where the disease
is today in the general population. There is lacking full public
confidence in most education programs because there are so many
contradictory statements by public officials and scientists as to
whether this is going to ‘be or is presently a heterosexual
problem.

264

 

 
 

 

The public wants to know what degree of risks they
face aS a community from AIDS, and it is really nearly that
simple. This is very important to the educational process
because it is human nature to ignore those things which are
unimportant. The public is asking if there is a parallel
between where we are now heterosexually with AIDS infection and
where we were in 1980 in the homosexual community. At present
there are no accurate data which would answer this question. We
do know where the disease was 5 to 10 years ago by those who
have died or presently have what is known as full-blown AIDS o
ARC, but we don’t know where it is today accurately.

Prevalence and incidence data gathered at regular
intervals will, also, let us know if our education programs are
successful or not or if other public health measures should be
implemented.

A concern we have about education is whether it is
really working. We do know there was an overall increase in
syphilis from 1986 to 1987 of 32 percent, and activities are
occurring which dramatically contribute to the spread of AIDS,
but we do know now quantitatively here in our Nation’s Capital,
for example, if they are increasing or decreasing, let alone if
education programs are working. It is a city where testing
targeted groups is warranted but a city like most others where
even the word "testing" is somehow thought of as bad or at the
very least as controversial.

In closing, Americans for a Sound AIDS Policy could be
helped in its efforts to educate the general public and targeted
subsets by this Commission in a number of ways. First, please
act in a leadership role in defining AIDS. Logic demands it be
HIV positive or infection by the HIV. Second, help discussion on
modes of transmission by speaking in terms of degrees of risk and
eliminate the term "risk group" so that we do not discriminate
unfairly nor lose sight of how the irus is most often
transmitted. Third, encourage the availability of rapid
prevalence and incidence data so that targeted education programs
can be designed and the results realistically evaluated by
periodic data collection. Please help make this first and
foremost a public health issue, and while eliminating the stigma
of AIDS, also, eliminate the stigma of testing so that rationale
discussion can be held from a medical perspective and successful
test-linked education programs enacted.

We can influence the public to deal more
compassionately with those infected. -We cannet satisfy their
need to know what. degree of risk they face without testing, and
without that information there is not an. AIDS- education program
that will be effective for them or any subgroup which requires
even moderate behavioral change. Thank you for this opportunity
to express our views.

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CHAIRMAN WATKINS: Dr. Holloman?

DR. HOLLOMAN: Admiral Watkins, members of the
Commission, I would certainly be remiss if I did not thank you
for the outstanding work which you have done and for the
outstanding interim report, which you have issued, and I would
like to further thank you for recognizing the role which
community health centers play in this epidemic. I would
certainly be remiss if I did not say, also, that this is a very
distinguished panel, and I want to thank them for their efforts
to compress their knowledge into 5-minute presentations which is
a herculean task, and they have done an extremely good job.
Being a bit verbose, I am going to go 6 minutes, with permission.
Not really.

CHAIRMAN WATKINS: Thank you.

DR. HOLLOMAN: However, I do want to recognize, also,
the help of David Cavanaugh who is the staff person to the
Community Health Centers AIDS Task Force. Dave, I think is
behind me. Dave?

We are some 600 centers located across the United
States and its outlying territories so that we do have the
opportunity to come in contact with, along with our colleagues,
some 35 million people who perhaps are poor and minority or —
underinsured or uninsured, so that we have an extremely large
and vulnerable audience. I think that the fact that we are now
seeing a rise in the use of intravenous drugs represents an
additional burden for community health centers. I might add
that we are prepared to do a job so that there is no need to
reinvent the wheel, although I would suggest that there is more
work that we can do, even if we were adequately financed, which
we are not.

We were originally put together to do a very specific
job, and we have remained at a rather steady level ‘of funding or
the funding has declined. If we do what we are supposed to do
now with AIDS, even in testing we would require additional
funding because in order to counsel an individual prior to
testing and then to give them the important information after
the test results return, the important counseling after the test
results requires more time than our productivity will allow.

We are, as I indicated, across the nation as a
network, and we have had some interesting experiences. I will
give you an anecdotal note or two about ‘how we are beginning to
run into the AIDS situation. We have, a nurse in Texas who is
concerned that she has a full waiting room, for instance, of
Hispanic mothers. They are seen every morning, and yet there
are husbands there whose behavior the wives may not be aware of
because of our inability perhaps or the need for special

266

 

 
 

 

training to link ourselves more closely to the culture it is
necessary that we begin to train our staffs additionally so that
they will not offend the very sensitive and very private and very
important culture of this Hispanic mother, and yet still reach
her family.

I think that we have evidence that there are certain
cultures in which people are sharing needles using such things
as penicillin and vitamins, particularly in border towns where
these things are easily available. We now find that in that

population we, are finding the HIV virus, so that this is a new -

population that we have to look at.

We certainly have the problem that we have seen with
immigration and naturalization. We have word that none of this
information is to be used against these individuals, and yet we
have word, also, that some 68 or more patients have been ;
summarily deported after having been tested in violation of all
the promises that have been made. 50, it is this type of break
in confidentiality, sometimes perhaps based on ignorance, but
sometimes based on race prejudice. That is something that we
are concerned about.

I am, also, concerned, and my paper may not show it
directly, that some of the statistics that we rely on may be
distorted because the poverty group is forced to use public
testing facilities while the more affluent members of our
society have the opportunity to have a greater degree of
confidentiality so far as their condition is concerned.
Certainly I know that in certain states now reporting is
mandatory and that those who fail to report are subject to
penalty. Yet there are persons who go to great lengths,
understandably, who try to protect their confidentiality. So,
these are some concerns that we have with reference to perhaps
statistical distortions.

I have several recommendations in my paper here, but I
would allow you to read those recommendations, and I would
certainly give over the time to answering questions. The
conmunity health centers are more than 600 in number, are in
every state, and we-are already a network providing health care.
Rather than have AIDS move into a categorical notch which will
destroy the rest of the health care system, I think we should
improve our health care-delivery system by including AIDS as we
include every other disease and adequate funding and care to all
people. Thank you. |

CHAIRMAN WATKINS: Thank you. ‘I would like to
commence the questioning on my left here. Ms. Gebbie?

MS. GEBBIE: One of the issues that we looked at a
couple of times today with other panels is the interrelationship

267

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of national effort with local effort. The panel that just
preceded you spoke about how a national media campaign might
underpin or overburden or do something to the efforts of local
areas. I would be interested in comments on that issue from your
experiences and perspectives, particularly if you have any
awareness of how the ongoing federal media campaign may have been
helpful or fit in or not fit in with what you are doing. If you
are in a state that has had a statewide media campaign what that
has done or not done for your local efforts, and I open that
question really to any member of the panel.

MR. OFFUTT: I would like to respond to that. One of
the problems of these national media efforts is still the lack
of identification with the issue, I mean if you are looking at
an ad campaign or a television PSA and you don’t see people of
color represented within that particular campaign, then it is
difficult to identify with the issue and as somebody pointed out
in the previous panel, to own the issue.

One of the things that I would recommend in terms of a
national ad campaign is to use national media as a means of
giving permission to local leadership, to local educators that it
is okay to deal with this issue. I think, also, it would be
beneficial if we could identify those national figures who have
some credibility within the community.

With all due respect I think people, for example, like”
Walter Payton of the Chicago Bears may have greater credibility
than some unknown minister in terms of talking about the AIDS
epidemic and its impact on black people.

MR. GERALD: I would like to, also, comment on that.
One of the problems that I have observed with the existing
national media campaign is that it really, also, depends heavily
on the voluntary cooperation of local radio stations or local TV
stations who have the option to play the PSA’s or not play the
PSA’s. You have a spotty kind of coverage of the campaign
itself. It really depends on the volunteer efforts of those
stations, and then again, the choice of those messages is, also,
highly dependent on choices made by the local media community.
In many cases the choices of messages will not serve the—
populations that really need to be reached within that particular
community. ’

MS. GEBBIE: That is helpful. Does anybody else have
a comment on that?

MR. MALDONADO: I think that we need to involve the
local people. My experience in the community is, for instance,
that if some of my friends know that there is going to be a
program that I am going to be on TV, they all call each other
just to watch, not so much to listen to my message but to see me

268

 

 
 

 

on TV. It provides me with an opportunity to get the message to
them as someone they can identify with, that they can relate to.

MR. GERALD: I had one additional comment, if the rest
of the panel would allow me. I want to repeat what I said in my
statement, and that is that as a general awareness program, that
national campaign strategy is important. I didn’t mean to
diminish the importance of that. I think though that clearly
the message needs to be reinforced on the local level. The
message needs to be constantly reinforced. You need that
two-pronged approach. I would put considerable resources into
community-based efforts as well.

MS. GEBBIE: As an observation, I would guess that
your ability to reinforce it would be strengthened if you knew
ahead of time what it was going to look like. So, you could do
those tie-ins that we spoke about.

CHAIRMAN WATKINS: Excuse me. Were you here to listen
to the dialogue of the prior panel? Were some of you here?

MR. MALDONADO: Yes.

CHAIRMAN WATKINS: Did you more or less agree with
what that dialogue brought out in terms of were you to design a
national system of education for the American public you may not
have come up with a national mailer out of CDC but rather would
have designed a variety of forms, flexible with heavy emphasis on
regional and local development of some of those things to make
sure that the outreach was effective? You might have some
written materials, but you might even emphasize more electronic,
other techniques. Would you agree with the general dialogue? I
have asked them to come up with a strategy that would allow the
planning for that to take place at really all levels, but
certainly at the national level it shows sensitivity to
community-based needs.

MR. OFFUTT: Absolutely.

MR. MALDONADO: In New Haven, the Women’s Aids
Coalition of the Mayor’s Task Force on AIDS, put together 14
posters of black, white, Hispanic men and women of different
ages. They did 14 different posters in English and Spanish.
These are the type of materials that are going to work out
there, and these are faces that people know and can identify
with.

DR. HOLLOMAN: We had a meeting just this pasts few
days of the AIDS Task Force of the Community ,Health Centers
here, representing the various efforts around the country, and
it was very striking how different the different parts of the

2639

 

 
 

 

country are in the ways of approaching it educationally and the
various needs.

One of the anecdotal points that came out was the fact
that if you translate, and I heard it earlier in the panel,
English to Spanish, you might miss it completely. Particularly
when the reading level of the Spanish person may be lower, may
be third or fourth grade or lower, so that we do have need to
use such things as posters, such things as the local community
can identify with, and the person who would certainly be best
able to tell what is appropriate for that community would be the
community-based organizations that are already there.

CHAIRMAN WATKINS: I didn’t want to steal Kris
Gebbie’s time, but it was a natural follow on to the prior
panel, and I just wanted to make sure that we continued that
dialogue. It is important that we understand the best means to
talk about some kind of a national education effort to make the
entire population aware, not to mention the intervention needs
in the non-mainstream population which is out there which is
most difficult to reach many times. That I think it is
important that we understand what best can be done there and
that we not repeat past lessons we should have learned on how to
best have an effective outreach program on the national level
going down to the local level. ;

MS. GEBBIE: At least one of you mentioned technical
assistance. I think Mr. Stein particularly mentioned it, but it
was a piece of, a couple of presentations, and you also,
mentioned problems of relationship with local health departments
or state health departments not giving you funding. One easy
answer, I think, would be to say, "Fine, we will just tell cDc or
somebody like that to be your technical assistance place." That
would get to be an awfully big CDC given how many of you there
are. That may not be bad. The two pieces of my question are
one, can you be more specific about the kinds of technical
assistance you need? Is it technical assistance about exactly
what is this infection or is it technical assistance about
exactly how do you do a media campaign or what is the technical
about which you want assistance. Then second, in the best of all
possible worlds, if we could fix the problems that technical
assistance come from a local resource that has it, like a local
health department or state agency or ought it come nationally?
What is your sense of where we ought to look for that resource,
to build that resource?

MR. STEIN: 'I don’t think, of course, there is any one
simple answer because I think it really depends on the specific
needs of the group that we are talking about. When we look at a
national response, I think what we are hearing today is the
importance of it trickling down so that it is implemented on a
local level.

t

270

 

 
 

 

MS. GEBBIE: I prefer some stronger word than
"trickle" by the way.

MR. STEIN: I will ditto that. When I look at
technical assistance, I am concerned that in essence many of the
groups represented here, have survived. GMHC, at which I was a
volunteer when I lived in New York a number of years ago has
survived. I feel as if my organization has literally just
gotten through a survival period because we were trying to
balance a million dollar budget with not a large administrative
staff. Really none of our funding pays for even a bookkeeper,
and so, how do we manage that; how do we, needing to learn how
to go after more money, technical assistance and writing
proposals, technical assistance in designing programs? A lot of
that has been received from a number of different agencies. For
example, the National Institute on Drug Abuse, NIDA, has come
through our community with a 2-day workshop on community
collaboration, building public health awareness campaigns. It
was a nice effort. The concept was excellent. However, they
were in and out in 2 days, and the amount of follow-up available
is going to be rather minimal. Again, I see less of a need
perhaps for the direct delivery to happen from a national level
as opposed to perhaps funding be available.

Now, National AIDS Network, NAN with which Gil is
affiliated, is in the process of gearing up for that. We are a
member agency of NAN, and I look forward to the type of
technical assistance that perhaps they would be able to offer
us, such as a consultant to come in for a 3-day visit to assist
in our reorganization because all of a sudden we have a $500,000
contract which we need to get in place immediately. So, that is
how I would see it for my specific need.

MR. OFFUTT: I would echo what Mr. Stein has said but
would, also, add that if we are looking at setting up
community-based models to respond to this epidemic then we are
going to have to provide some assistance to some of these
communities in terms of just how to get organized, who to get
training, how to get training, how to deal with some of the
variety of issues related both in terms of AIDS education and if
they choose to provide services, the delivery of services as
well. So, it is going to be that kind of assistance, as well,
plus what Mr. Stein said.

MR. GERALD: I am Gil Gerald, of course, Director of
Minority Affairs at the National AIDS Network, and the National
AIDS Network came into existence a little over 2 years ago. It
was brought together by the oldest AIDS service organizations in
the country, including the Gay Men’s Health Crisis and a number
of organizations in California and Massachusetts. The five
largest organizations brought us together to.address this very
issue of providing and sharing information with the emerging

271

 

 
 

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organizations that were developing across the country, including
Topeka, Kansas, for example. Interestingly enough we are able to
provide direct technical assistance to whole communities with
private corporate support. We have gotten private support from
major corporations in this country to provide technical
assistance to community-based organizations in five cities in
this country. We have a Field Resources Program that makes
experts available to those communities.

As funding becomes available, this can be expanded.
The first national conference of the National AIDS Network (NAN)
will take place in October, and this conference will focus on
administrative skills. We hear clearly what our community-based
organizations, some of which are represented on this panel are
talking about in terms of their need for support around
administrative skills and fund-raising skills and management
skills. Certainly NAN is a resource that is already there that
is evolving very fast. The National AIDS Network now represents
over 400 community-based organizations We are producing technical
assistance packets, and they are currently being distributed.

DR. HOLLOMAN: May I? I am Dr. Holloman, and we need
assistance in making sure that our health workers and that our
community boards and that our patients are educated. We need
assistance in teaching them. We need assistance in assisting
our physicians and our nurses in protecting them from burnout,
particularly when they have to go intensely one-on-one with
reference to a recently HIV positive individual, and then to
carry them over an extended period of time. I think that this
is the type of technical assistance that we need. What is it we
are to say to a person who is to be tested who has no knowledge?
We have a community that has a rather low level of knowledge with
reference to AIDS, and now that the incidence is beginning to
plateau out in the gay men’s area, I think that the fact that now
with the drug abuse being more prominent and perhaps increasing
that we need to recognize that the behavior of a drug abuser is
quite different that of an intelligent, educated gay person. The
efforts to change the habits and behavior in this community are
quite different, plus the fact that these individuals are already
directly in violation of the law, and that we have a national
lack of concentration, perhaps to some degree, on the drug
problem that we have.

 

Now, we see the victims of the drug problem, and this
is a portal through which we anticipate transmission through
heterosexual means into the community. So, we do need
educational help and technical help to make sure that we know
exactly how health workers will be dealing with this problen.
They need it, and they need it on a regular basis. It is
something that has to be reinforced. Thank you.

272

 

 

 
 

 

 

MR. MALDONADO: I hear numbers being thrown around.
When I heard Mr. Smith speak about a million dollar budget, it
took'’me back because Hispanos Unidos Contra SIDA/AIDS has a
budget of $27,000, and that is to hire a director, a part-time
secretary, a storefront, utilities, etc. We need funding, and
again, we need funding to come the local level. I am very
concerned because in the State of Connecticut over 52 percent of
the cases with AIDS are among blacks and Hispanics, and the
information is not reaching blacks and Hispanics. We need to get
that information out.

MR. SMITH: One thing that may be helpful for any AIDS
organization, particularly a new one is to understand the
complexity of organizations within the federal and state
governments that deal with different issues related to AIDS. It
is a maze, and it is very difficult to unravel and understand,
and so, if there were a guide to getting through the government
for AIDS organizations it would be a great help.

DR. HOLLOMAN: Absolutely.
CHAIRMAN WATKINS: Dr. Lilly?

DR. LILLY: My first question has to do generally with
the idea of evaluating what you are trying to do educationally. I
will ask Dr. McKinney to start because I know that GMHC has made
some efforts to evaluate their educational materials, and given
those efforts, Dr. McKinney, do you think that your efforts have
anything to do with the apparent amelioration of the transmission
rate within gay men?

DR. MCKINNEY: In the face of crisis, Gay Men’s Health
Crisis, met the crisis situation in a crisis modality. We did not
have models, educational models to draw from. The first
educational efforts were what felt good, what felt right, what
people felt good about. You are so right that we had to develop
strategies for determining if this 1s good, what part of it is
good; what works; what doesn’t work with regard to our AIDS
prevention programs, our volunteer training programs and so on.
We knew that parts of it worked. We were not able to identify
which parts worked and which parts might be discarded. Within
the past couple of years, we have been aggressively evaluating
our programs to determine what parts are more effective and what
parts are less effective so that we can more efficiently do the
job. We do have some empirical evidence from the so-called "800
men study" which compared several different educational
interventions to determine the relative effectiveness of each,
and we have determined what materials and modalities are most
effective over time, as well. Currently we are concluding a
2-year program that has been funded by the Centers for Disease
Control. It is a risk-reduction program and is measuring
relative effectiveness of different educational interventions and

273

 

 
 

 

then, going beyond that, testing them in other locations to
determine whether or not they are effective in those locations as
well. Examples are the Riker’s Island program and the residential
treatment programs. Our materials have been taken out to
Columbus, Ohio, under the aegis of the Ohio Department of Health
to be tested in Columbus, Cincinnati and Cleveland so that we are
getting empirical data from those sources. It is a long time
coming, but that part of the program is just now coming into
being. We now can predict an outcome when we initiate a progran.
We have not always been able to do that.

MR. GERALD: Dr. Lilly, I would concur with an earlier
statement made by Mr. Maldonado that we need to be cautious
about the use of consultants in education efforts, but I would
like to point to the work performed by one that points toa
great need. There is one really very nice report that was
produced by a group called Polaris in San Francisco which
established baseline data about behaviors, attitudes and
knowledge in one particular community, and this was the black
community in the San Francisco Bay Area. Part of the problem
with evaluation is that in the beginning, in the crisis
situation, there was no baseline data from which you could begin
to measure change. I would encourage the Commission to
recommend that there be expenditures to establish baseline data
around behaviors, knowledge and attitudes in specific
communities. You cannot take a Harris poll of the country and
really get a sense of what is happening in either the gay
community, the black community or the Latino community. You
need to really talk about specific studies that address specific
groups. Those studies really are an aid to community-based
organizations in establishing goals.

MR. OFFUTT: I just wanted to add that I think we are
just now beginning to see specific efforts at targeting minority
populations in terms of education models, and as has been the
case with regard to the gay community, we are going to have to
work with these models for a period of time before we can begin
to assess their effectiveness. We have found out, however, in
terms of our work in Chicago that it is important in terms of how
the information is given to the community. It is important in
terms of whether or not the information is provided in a language
that the community feels comfortable dealing with and in a
setting that the community feels comfortable being in. I mean
all of ‘these things have to be taken into account.

MR. STEIN: Dr. Lilly, I would like to say with respect
to that evaluation,: in terms of a national response, most of the
work that we have seen results and some good action is coming
from the National Institute on Drug Abuse. They have, to me,
been in the forefront of funding both education, training and,
also, research efforts with respect to taking a look at what is
happening with the IV drug-related population. We are currently

274

 

 
 

EE

starting up an evaluation component for our street outreach
program to evaluate how effective a specific type of intervention
is to impact upon IV drug users. It is a 3-year study. So, we
really won’t be seeing results for quite a while, but I think it
is those type of efforts that we would like to see more. What is
even more exciting about it is really taking Gil’s comments one
step further in allowing community-based organizations to
participate very actively, not really be attached to this
research component, but really be one of the centers of it. So,
for example, we are the research site. I am the project director
for that. I am responsible for assisting in that whole process.
It gives my organization and our community a feeling that we are
making an impact and that research is accompanying it and that it
is doing something. I think NIDA is right now the only agency
that I have worked with on the federal level that I have seen
that much of a response, and I am sure it is happening on other
levels, but they have been the most vocal.

DR. LILLY: I suppose another aspect of this add is to
what extent does sexually-explicit education play a role in what
you are doing. I am wondering this particularly because of the
Helms Amendment that came up and was, in fact, extensively
modified before it was actually passed. I am wondering if that
is providing barriers to your educational process, the fact that
as far as I can tell, one can teli people what not to do sexually
but one cannot tell them what is still left to do.

 

MR. MALDONADO: Let me say something about that, and I
will speak about the Puerto Rican community. When you speak
about the Puerto Rican community and when you do AIDS education,
you cannot talk to the Puerto Rican community about AIDS
education unless you speak about the culture. For many of us the
word "condom" is something new. Many of us have never seen a
condom. And now, with AIDS, we are being told that we have to
use a condom. Materials explaining the necessity of using
condoms must be very sensitive to the culture. Sex is not
something that is spoken about in our homes. Now, with AIDS we
have to begin to teach our people that we need to speak about
sex. This is very complicated.

MR. OFFUTT: I think what I have found in terms of the
black community is that since, let me back up and just say in
terms of black men specifically and young black men, the teenage
population. Sex is a big part of their validation in terms of
who they are. So, we just cannot go out and there and say, "You .
cannot," without providing some alternatives in terms of how you! -
can and how you can do so safely. Yes, thé Helms’ Amendment is
extremely troublesome to us in terms of limiting our ability to
be explicit, but on the other hand, we have had to be explicit
because the language of the streets which these kids relate to is
explicit. You have to talk in terms of where they are at, if you
expect to reach them and to have an impact on them, and so, we

275

 

 
 

OY

have tried to do that, knowing that we are in jeopardy in terms
of the Helms’ Amendment but, also, recognizing that getting the
information across to this, very vulnerable, portion of our
population is crucial.

DR. MCKINNEY: The 800-men study clearly established
the fact that an educational intervention that utilized visuals
as a part, is more effective in modifying behaviors from high
risk to low risk than an intervention without the use of visuals.
The Helms’ Amendment was targeted rather at our safer sex comics
that were produced by the Gay Men’s Health Crisis in New York.
That there is as much diversity in the gay population as there is
in the general population, and there is no single piece of
literature that is appropriate that addresses all levels of that
population. It would be inappropriate for us to give a piece of
literature in Chinese to the English-speaking population, and we
don’t, but we do publish in Chinese for the Chinese population.
Within the gay community there are those individuals who respond
more effectively to what cartoon art. The power of cartoon art
canotn be discounted. Political cartoons are a very, very
strong format of conveying a message that might take a whole
typewritten page but can be communicated very powerfully ina
political cartoon, and we use cartoon art to convey a very
important message to a particular audience and we have found
that that means of communicating is the most effective means of
communicating with that particular audience. Our critics who
feel that we should not use the safer sex cartoon are asking us
to abandon really a segment of the population that responds
effectively to that form of communication. We cannot abandon
that population, and we will continue to use the kinds of
materials that are most effective for certain populations.

 

MR. MALDONADO: I would just like to support what Dr.
McKinney said because cartoons to us are very important to us.
We love to read cartoons. So, when we decided to do the
brochures, we used the cartoons, knowing that our people were
going to enjoy then.

DR. HOLLOMAN: Dr. Lilly, I think that we do have a
problem, and we will continue to have a problem that is different
from the gay man’s problem. I think that the same means by which
we reach that population cannot be used so far as the IV drug
user is concerned. It is a completely different culture and to
recognize that this is where we are woefully short and the IV
drug problem is not a new problem. The controversy around it is
not new, but the solution seems to defy anything we have come up
with. I think the experiment that we are doing in New York with
clean needles is an interesting one. The experience with bleach
as a means of sterilizing dirty needles is an interesting one.
The experience that we are seeing on the border with the use of
needles is an interesting experience, but we need to go straight
to the drug-abusing population and not have barriers and not to

276

 

 
 

 

isolate them. They are there on the corners. If you ride down
any street, I can assure you that you will see parking tickets on
every illegally parked car and standing next to the illegally
parked car you will find the drug pusher and the person who is
buying the drugs and the person who at that point on that street
corner could, also, receive perhaps some education. Just like we
can pass out tickets, so it is a need to recognize a problem, not
trying to ignore it, not trying to make sure it will go away
because the cost of drug abuse in this country, and I am sure you
know better than I, is enormous. We still are suffering from
what I call the ostrich syndrome in which we would like to ignore
it because those people don’t count. We need to get over that
approach because those people are a time bomb which may threaten
to destroy much of our society.

MR. GERALD: I think the problem with the Helms’
Amendment that you cannot legislate effective messages on a
national basis. These are local decisions that have to be made
by the people who are in touch with the community and understand
the kind of message that will have some effect on the people that
they are trying to reach. You know, some of the most effective
programs that the community-based organizations are involved in
are street outreach programs. Street outreach programs, put
people like our reformed IV drug users on the street, who can
speak in a familiar language to their peers. An abstinence or
"Just Say No," or mutually monogamous message is not really going
to have very.much effect in stopping the spread of the AIDS
virus. Stopping the virus is what we would like to do. There is
a whole body of public health information that supports the idea
that you have to give people options. People have to understand
what their options are. If you give them a very limited number
of options, then you limit the ability for people to change
behavior. You have got to give people all their options, and
sexuality, as we well know, does not begin and end with
penetration. There are a whole range of activities that are
involved in sexuality, and people have to understand that this
thing that is very important and personal to them does not come
to an end and that they have options, clear options.

MR. MALDONADO: There is another issue. All of us want
to be able to do things for the addict. I think we need to allow
the addict to be part of the process. I heard the word "expert"
being used here before, and I am very concerned when I hear the
word "expert" because many times those are the people we call
upon. We gather experts. There is a problem in the addict
community. Many times we respond by drafting materials for the
addict. The addict looks at it, and its like reading a foreign
language. They cannot relate to the materials. Its better to
get the addicts themselves to meet and come up with the
materials, and the text. We should help them do it.

277

 

 

 
 

MR. STEIN: I would like to go another step with this.
There is so much focus, especially around the Helms’ Amendment
issue on the impact of educational materials. I think frankly,
the answer is not so much in posters and pamphlets, which are
clearly important, but they are not going to change behavior.
If we have a limited amount of money and resources to allocate,
let us put it into people. Let us put it into former users out
on the streets. Let us us put into peers educating peers. Let
us translate it into action. A brochure being sent out to an |
individual will have a minimal impact versus a peer, whether it
is a teenager, a student, a former drug user going out to the
area where he or she used to cop drugs and being able to give
that pamphlet to somebody and sit and talk with them. The
pamphlet, I think, is a vehicle. Frankly giving out a condom
has even more impact because there is a gift relationship.
There is a process there where we are literally handing
something to somebody, and it is free. It doesn’t cost anything
and no judgment involved here. That is where education happens.
We have had four outreach workers. Four outreach workers will
not make an impact in Baltimore City that has over 30,000 known
IV drug users. That is minimal impact, and that is, I think,
where we need to see a lot of our educational efforts being
directed.

CHAIRMAN WATKINS: Dr. Lee?

DR. LEE: When I first started here about last July,
with the lady who was working for me at that time, Ms. DuFour, we
started a file on community-based organizations. It ran out
into the hall, and through the next building. She left me to go
to work for Admiral Watkins and Polly Gault, and that file is
still sitting there. Now, I am trying to get a handle on
organization. Mr. Gerald, you said that you have 350
organizations within your network. Dr. Holloman said that he had
600 organizations.

DR. HOLLOMAN: We have 600 community health centers
which are community-based across the United States and Puerto
Rico.

MR. SMITH: Specific to AIDS?

DR. HOLLOMAN: Not specific to AIDS. This is a primary
care organization, and that is where I think that AIDS needs to
be confronted. That is where we are the frontlines.

DR. LEE: I understand that, and when we had our first
Commission meeting in New York we immediately went to the
experts and Tim Sweeney and Richard Dunne at the Gay Men’s
Health Crisis Center organized one of our sessions. We met 13
organizations there in 2 hours. So, I am wondering if you
couldn’t get together. You would be a sufficient political

278

\

™ J

 

 
 

force. It is hopeless going through the bureaucracy, even
finding out how to get through the bureaucracy. We are aware of
that. One of our main jobs is to try to find ways for you
people to get through the bureaucracy faster. We spent a
terrific amount of time with FDA, and so forth. We found out
that they were not the villain, really. It is the people who
are putting constraints on them that are more the villain.
Anyway, sir, could you respond? Is there any way to get all of
you together? Is that even a good idea? Wouldn’t you be pretty
amazing as a political force, if you did?

DR. HOLLOMAN: I would like to respond. We do come
together, but we have not met personally. We depend on his
organization for much of our material. Certainly we didn’t
rediscover the wheel, but we are hopefully learning to become a
political force. We have been during the past few days
lobbying, I am sorry, educating --

(Laughter. )

DR. HOLLOMAN: -- our representatives with reference to
what community health centers do, and how adversely AIDS can
impact our ability to exist, but we certainly have and do need or
would like to be able to cooperate in an educational effort to
make sure that Congress knows just how important this problem is.

MR. GERALD: We come together under the National
Leadership Coalition on AIDS. We are both members of that body.
Certainly within that context we have worked together. I concur
with much of the remarks that you have made. I am on the
advisory committee to the US Conference of Mayors. They
distribute CDC funds to community-based organizations, and in
fact, Mr. Maldonado’s organization did get some funds through the
US Conference of Mayors and I just want to point out that that is
an example of direct funding to organizations that bypasses the
states, and I think that that needs to be expanded. Some of the
organizations that were funded in the last go-round, if I recall,
were community health centers in the South and I think in the
Midwest. I concur that in some parts of this country where there
are no community-based organizations that are AIDS specific, I
have advocated that community health centers are key. They are
meeting the primary health needs of particular communities, and I
have seen some very good proposals from these organizations. In
fact, I believe I saw proposals that address migrant workers, and
I have seen proposals that address the black community in either
Mississippi or Alabama. I think one of those proposals was
funded. So, there is this dialogue that is going on between us,
and it is being strengthened.

DR. HOLLOMAN: There is a real interdependence, and it
is there. I certainly have to acknowledge the efforts of the Gay
Men’s Health Crisis Center, as well as the National AIDS

279

 

 
 

Ce

Network, because much of the work that we are now doing has been

as a result of their planning and pioneering efforts. We are

now, I think, in a position as a viable operating organization
which can be more effectively used. We do exist in every state

and in the territories so that we are providing primary health
care, and we do have basic position papers with reference to AIDS
testing and counseling, and we really feel that great funds are
needed, but this is not a plea for funds. This really is a plea =:
for cooperation and for education, for technical assistance and

for frank recognition. I think that we are achieving that.

CHAIRMAN WATKINS: Are we seeing development of a
loosely configured structure being built that is not connected by
any kind of rigid structure? Community-based organizations are
doing their things, and we are beginning to see the National
Leadership Coalition on AIDS, the National AIDS Network, the AIDS
Action Council with their recent report? You know, there are a
lot of activities going on. The linkages are being made. Is
there anything that is building that is clear enough to identify,
say those that might have the greatest impact that now couple
together at national policy level or state policy level down to
regional, local? We are beginning to see those in such a way
that there could be an identifiable, albeit loosely configured
structure to the national system that is actually being built?
You are doing the work out there that you have to do, and so,
aren’t the linkages and the interchange in communication is
beginning to flow?

 

MR. GERALD: I think the answer to that is yes, and I
think that some of the organizations that you have mentioned are
clearly within the league that we are talking about. I would add
that there is room for some emerging organizations that I would
advocate be recognized. For example, I was just in Los Angeles
for a National Symposium on AIDS in the Latino Community, and
this brought together professionals from the Latino community
from across this nation. They have decided, to organize a
National Latino AIDS Organization, and I think it is important
that when we look at the history of the response to AIDS in the
Latino community that we see the emergence of this organization
as an important ingredient.

So, I don’t think that we are going to close ranks
behind already established groups and say that these are the
identified groups. We need to be open to the emergence of
groups. It is not an and/or situation. For example, the Latinos
Clearly are part of the National AIDS Network, and they are part
of the National Minority AIDS Council which is an organization |
that has presented testimony before this Commission.

DR. HOLLOMAN: They clearly are a part of the network
of community health centers. They are significant in our ranks.

280

 

 

 
 

 

MR. MALDONADO: I, also, think that the hierarchy was
there before these organizations came into place. There was a
problem, and the problem was that the traditional CBO’s that
were out there were not meeting the needs of education, basic
education in the community. This is the reason these new
organizations came into place. Some conmunity-based
organizations, just don’t want to touch the issue of AIDS.

MR. OFFUTT: I think that has, also, very much been the
case in the black community. It is fine to provide health care
services to people who have been diagnosed either with AIDS or
HIV-related illnesses, but to be able to discuss sexual behavior
issues is a much more difficult proposition, and if the person
responsible for putting out information is uncomfortable in terms
of dealing with the myriad of sexual behaviors out there, that he
or she is going to find, then the quality of that information and
therefore the impact that that is going to have in terms of
changing the behaviors, the at-risk behaviors, is going to be
questionable.

“MR. MALDONADO: I think we need not to forget that at
the beginnning it was identified as a gay disease, but now it is
no longer a gay disease. Now, it is a disease of blacks and
Hispanics. The numbers are going up, and we are not getting
anywhere.

MR. SMITH: Just to respond to both of you, I think
there will be a handful of national AIDS organizations that
emerge in leadership roles, but to unite, to become a political
force, as such, the focus of a non-profit dealing as a CBO is
really education and caring for those infected and not lobbying
as such. They are nearly all C3’s, and you are not going to have
many 501C4 AIDS organizations, and that may or may not be good.

I don’t know. That is one of the difficulties, just the legal
thing.

DR. LEE: This kind of fragmentation makes your case
more difficult to build. Each one is an excellent case, but when
you have over 1000 cases, there is so much information.

MR. SMITH: Also, as the disease spreads,
geographically and more into the heterosexual community there
will be more AIDS organizations that will come up. Some will
join others or some will form other coalitions, and I guess it is
maybe a parallel to have a representative congress. There are a
lot of different viewpoints, and hopefully, it gets worked out.

DR. LEE: Could I bring up one other point? We have
supported in our last series of hearings the Community Research
Initiative in New York. To me it has seemed like a very
worthwhile thing to support. I know a lot of the people in it.
Are you people involved with that?

281

 

 
 

 

¢
{

MR. OFFUTT: No.
DR. MCKINNEY: We are.

DR. LEE: The Gay Men’s Health Crisis is, but I woulda
think it would be terrific if Dr. Holloman was involved in it.

DR. HOLLOMAN: Actually I am very sincere when I say
that I have been depended on, through the early years the Gay
Men’s Health Crisis Center because they did at the time have the
expertise and some limited resources. The limited resources that
we are now facing are really in our own backyards, and our system
itself is now threatened because of the limit on resources, and
because of the different needs in our patient population.

DR. LEE: I want to tell you there is money coming down
to the CRI. It is there, and it is coming down through the NIH.
So, there is a carrot there.

CHAIRMAN WATKINS: Dr. Walsh?

DR. WALSH: I think the fragmentation has been harmful,
but I would say that the AIDS Network is certainly to be
complimented for the political clout you have already
demonstrated, my heavens. I have never seen anything hit
Washington so hard and so fast in my life, and I have lived here
most of my life. The concern is that when anything hits that
fast, the attention span of Congress is very short. You do run
the risk, I think, of peaking and then if you are fragmented, as
Bert says, and this is where I agree with hin, you do run the
risk then of losing constructive influence. One of the problems I
think has been that the plethora of bills that are coming out are
much more politically oriented and confused, rather than
purposefully oriented in a way in which you would like them to be
which is the part again that I agree with him on. You have to
prioritize among yourselves the things that are most important.

I am particularly interested in your thoughts on the primary
health care center network. Really when these were started they
had much the same type of scattered clout, until finally they
became a pretty accepted way of delivering overall health care so
that you feel sufficiently confident to sit there and say, "Oh,
yes, we didn’t know what to do. We turned to the Gay Men’s
Health Crisis, and we asked them what to do," and you knew that
in no way would that lessen the influence of your network of
health care centers. I wonder for the long haul what your
thoughts are as to whether an umbrella like that might not in the
long run be important to you because there are so many
ramifications to AIDS, first of all, as a disease, and I hate to
call AIDS a disease. It is a wrong terminology, but it ties in
with so many other things. As the Admiral pointed out in his
report, it ties so much into an IV drug abuse program which many
people will psychologically and mentally just separate off from

282

 

 
 

 

AIDS because they will say that there is only a small percentage
that are involved with AIDS.

We talked about environment and improving housing to
increase self-esteem among the poor. In effect, we are talking
about a mini war on poverty as a real weapon in this whole
picture, and I wonder if there isn’t a way or what your thoughts
would be that what you are really talking about is primary health
care education expanding into a new disease. You have a built-in
base of support for primary health care particularly among the
minorities because it is frequently the only health care they
get. It is the only access they have, and I just bounce that out
for conjecture to see what you think as to whether that would
strengthen perhaps what you could do. Again, I am talking in the
long term because as Beny Primm said, he is a pessimist and so am
I, "AIDS is going to be with us for a long, long time," and you
are never going to maintain, and I don’t care whether it is AIDS
or leprosy or what; you are not going to maintain peak interest
in one disease forever. There has to be an umbrella, and I just
see the primary health care units as a great opportunity because
you have stood the test of time, and I would like your opinion.

MR. OFFUTT: I, for one, thinking in terms, of our
experiences in Chicago, went to the primary health care
providers initially back in 1983, trying to get them :involved,
and I think ‘one of the problems has been that at that time they
were not interested.

DR. WALSH: That is right.

ae
MR. OFFUTT: Yet, we were seeing the numbers of cases
coming out of the black community, and we couldn’t sit back and
say, "Well, you know, we cannot wait until you all decide that
this is a significant problem."

\

DR. WALSH: I know that.

MR. OFFUTT: Unfortunately, this still is predominantly
the case in the city of Chicago. We still cannot get black
physicians, black nurses, black medical professionals of any type
in numbers to get involved in this issue. Occasionally one or
two might be involved in terms of primary patient care. We have
currently two doctors that we make referrals to. We have the
involvement of a small group of nurses who are connected with the
Chicago Chapter of the Black Nurses Association, but that has
been it,. and one of the biggest problems that we have seen in
terms of the health care group system affecting the black
community is that if you have AIDS and are being treated in one
of those facilities, your treatment is not all that great.

_ DR. WALSH: Is the expansion though that we are
considering in our deliberations of the National Health Service

283

 

 
 

 

Corps, is this more logical or likely to take place if it is for
Say a primary health care center? Would you be willing to give
the primary health care groups a second chance?

MR. OFFUTT: I am always open to giving them a second
chance.

DR. WALSH: I am just thinking of a way in which we
can get as much value for the dollar but, also, a sustained
program.

MR. OFFUTT: I think we recognized initially, and I
certainly recognize that we are not able to do the entire job
ourselves.

DR. WALSH: They didn’t know. They were as ignorant as
we were.

MR. OFFUTT: I think the door has always been open in
terms of working with that. We have done a number of educational
presentations to primary health care providers.

DR. WALSH: You see, I am just wondering with the
reluctance of the doctors to participate, if they are lured into
participating in something broader than just taking care of AIDS
patients, in a sense you have got them trapped. I mean they are
in there, and they have got to take care of them, too, else they
cannot participate.

MR. OFFUTT: But unfortunately, many of them are
operating in that broader context and still are having difficulty
taking care of those patients. That has been part of the
problem.

MR. GERALD: I would like to illustrate how these
problems actually manifested. In reviewing proposals, let us
say for a particular city, I do recall reviewing proposals for
community based organizations in New York for efforts targeted to
minority populations. There were a number of proposals that came
from community health centers, and there were proposals that came
from community-based organizations that were already doing AIDS
work within minority populations. We are talking about a small
pot of money. The ones that were coming from the
community-based organizations like the Kupona Network were
demonstrating that they had some experience, some commitment and
some understanding of issues. The proposals from the community
health centers reflected the need for resources to educate staff.
Now, what do you do in a situation where you have a small pot of
money and two organizations? One wants to educate staff, and one
already has the experience and the sensitivity and the knowledge
to undertake prevention programs in ‘the community. It is a very
difficult question because we recognize that the community health

284

 

 
 

<<

center is an important resource in the community. You want to
be able to say, "We want to fund both." We want to provide the
education right away because it is needed. HIV is being
transmitted as we speak. Do you take that resource and give it
to an organization who will then have to reapply for funds after
first giving information and knowledge to then go and do
education. This is an example of the kinds of difficulties that
we are operating under.

DR. HOLLOMAN: I think that is very true. There has
been perhaps a reluctance on the part of some black physicians to
participate in the care, treatment, and diagnosis of AIDS
patients. The same has been true with the majority community as
well, and the majority organizations have, also, similarly tried
to walk around it, to ignore or certainly not participate. The
‘debate continues to rage as to whether or not it is an unethical
act to refuse care to an AIDS patient, and we continue with some
of the unresolved philosophical positions. It is important, and
we are back here again after 20 years with a group of
community-based organizations which is really concerned with the
accessibility of health care, not only to the poor but to all
Americans. We haven’t really made much headway in that direction
because we have gone off into many special interest directions.
When AIDS, as you suggest, Dr. Walsh, may well be just another
categorical disease or special direction 2 or 3 years down the
line, and there may be other things that are more sexy, more
jazzy. But as Beny Primm says, "It looks like we are going to be
here for the long haul with AIDS," then this might be an
excellent opportunity to address our health care delivery system
and to eliminate some of the inequities.

 

DR. WALSH: To me it just presents itself as a
potential resource pool.

DR. HOLLOMAN: Absolutely.

DR. WALSH: All of us have to take a look at our
budget deficit, and we know that we are not going to get
everything we want. How are we going to be able to make the best
use of it and still answer the needs of those of you who have
dedicated so much time to developing the AIDS network and the
AIDS educational backgrounds that you have. This is where I do
agree with Dr. Lee, and I am concerned that bureaucrats are all
the same. The standard answer when you get fragmentation is
there is no way we can oversee this or there is no way we can
determine whether they are doing good work or not because there
are too many. They like to deal with the familiar if they can,
and I am searching for a way to find out how we could do it
because I do think that we have got to find an answer for the
AIDS problem. -

285

 

 

 
 

MR. GERALD: Clearly in terms of the services that we
provide, community health centers are part of what we would
consider as organizations that we would serve. So, therefore,
in terms of the services of the National AIDS Network clearly
community health centers are part of it. If we get a request
from a health department, we respond. It is not just the
traditional community-based AIDS service organization that
utilizes the services of the National AIDS Network.

MR. OFFUTT: I would, also, like to add that we have
been providing a number of inservices to health care agencies at
the local level and, also, referral services for them in terms of
clients that they may come in contact with. What concerns ne,
however, is when I have to provide resources to a person infected
or impacted by HIV who has been to several doctors in the
community, and all of them have stood across the room from him
saying that we cannot treat you or we do not want to treat you.
That concerns me.

DR. WALSH: It is inexcusable.

MR. MALDONADO: More serious for Hispanics is that
although the services are there, there is no Spanish-speaking
staff to give the services. I am speaking specifically about
testing in the State of Connecticut. Of the state health
facilities that offer testing and counseling, not one has a
bilingual person to provide counseling. So, how are you going to
refer someone to testing if there is no one there who can speak
to them in their own language?

 

CHAIRMAN WATKINS: Ms. Gebbie?

MS. GEBBIE: It really fits in quite well as a follow
on, I think, to what Dr. Walsh has asked, and may be something —
you would want to jot some thoughts down on if we are tight on
time here today. Late yesterday we explored one of the
implications of our penchant for disease of the month club
organizations, and that is that with all the attention to AIDS,
our attention to other sexually-transmitted diseases has waned,
and now some of those diseases are on the increase. You have
gathered together many of the organizations sitting at this table
now around a sexually-transmitted disease. It is, also,
transmitted by needles, but it is sexually transmitted. What
observations would you have on the long run of maintaining AIDS
networks and AIDS organizations as a separate disease oriented
resources, or the possibility of linking in with those
organizations, such as VD action councils or the Physician Health
organization we heard from yesterday and others around the whole
cluster of diseases where a common effort might over the long run
accomplish something? You, also, lose some identity in that.

So, it is plus and minus, but I would be interested in
observations.

286

 

 

 
 

 

r MR. GERALD: In terms of the minority community, I had
the privilege of speaking before the Provident Clinical Society
in Brooklyn which is a chapter of the National Medical
Association, and they specifically invited me to speak to what
can the Black Community learn about the gay response to AIDS. One
of the things that I pointed out was basically what I said in my
statement. When you deal with this particular issue of AIDS,
you, also, address some of the other underlying social issues and
economic issues in the community. I think it has been shown that
infectious syphilis is way down in gay and bisexual men as
compared to the rise in infectious syphilis in the general
community. When you deal with this issue of AIDS and you
mobilize your community around AIDS, it doesn’t: mean that you
abandon the other issues. I mean it is a way of addressing
teenage pregnancy. It is a way of addressing IV drug use. It is
a way of addressing the high rates of STD’s in our community. I
think that this becomes a vehicle for addressing all of those
other issues, and we are very much trying to make that clear,
When you are dealing with AIDS, you are not dealing with AIDS in
isolation of these other health concerns.

MR. OFFUTT: I would like to re-emphasize what Gil has
said. If we were to do that, now, we would not be in business
because it is a broader issue than just HIV infection. We do
have a sexually active teenage population in Chicago. We have
an exploding teenage pregnancy problem. We have an exploding
STD problem which includes syphilis and all these other things
which tie into sexual attitudes within our community which tie
into not talking about sexual diversity within our community.
All of these things are linked, and so you cannot just talk

about one. You have to talk about all of it.

' _ MR. SMITH: What you are suggesting I think is very
good. AIDS though is such a problem and so new and needs so much
education that the focus is probably going to remain AIDS for
some time. What may help organizations like these, certainly
ours is if you or the Public Health Service or CDC could give
direction for a long-term plan of reacting to this epidemic and
other sexually-transmitted diseases so that people in their
planning can think far enough out to include that sort of issue.
I think we need some leadership, and it needs to come .from
somewhere, and it doesn’t seem to exist right now.

CHAIRMAN WATKINS: We ‘have time for one more response,
and then we are going..to have to close out the panel. ,

ke

~

- MR. STEIN: I was going to say that many communities
prior to AIDS never even had an organization focusing on
health-related issues, such as sexually-transmitted diseases. I
think AIDS has pointed out that deficiency in the past, and I
note that the specific name .of my organization doesn’t even have
the word "AIDS" in it. We focus on AIDS now. I hope that we

287

 

 
 

 

will be able to broaden our mission so that when AIDS, hopefully
is more in control, we can expand so that we can provide that
type of service that is clearly missing at this point.
Communities do not very often have that widespread level of
response to health-related issues. Sometimes they are very
targeted in specific diseases. I think we need to take advantage
of what we are learning in terms of our deficiencies with respect
to AIDS and carry that forth into the future.

CHAIRMAN WATKINS: [In honor of Dr. Primm, Dr. Holloman,
you can have one more comment.

DR. HOLLOMAN: I will tell him in absentia I made a
point.

CHAIRMAN WATKINS: He would have been pressuring me
anyway.

DR. HOLLOMAN: Thank you, Admiral Watkins. I think
that the fact that there are many Americans without access to
health care of any kind is a very important point. The fact that
now we are concerned with a health issue, AIDS, that we have the
opportunity to consider AIDS along with primary access to health
care for all Americans, and if we can come out of this Commission
with that, we have made a giant step forward.

CHAIRMAN WATKINS: I think we are all very sensitive to
that, and certainly I think you can see in the very early stages
of building a national strategy, we are turning over the rocks of
the national health care delivery system in a way that I hope
will lead us to a better way of life in the country. Even though
we are doing it through the HIV lens, at this point in time you
can see within that just in the health care delivery
recommendations we have made already of a system that simply was
not ready in any way to deal with a crisis. Certainly one of the
great lessons learned out of this epidemic is going to be a much
more streamlined, modernized concept of emergency health planning
in this nation so that when the button is pushed we have networks
we don’t want to lose. We don’t want to lose the linkages, and
we have seen what you have had to do. The community-based
organizations have been the stalwarts. They are the frontlines
of defense right now and have done so much on their own. We
don’t want to lose that networking. So, we are building in the
nation perhaps a whole new concept of integrated health care
delivery where we can optimize costs and we can do things that we
haven’t done before. So, we don’t want to lose the momentum.

I want to praise Mr. Gerald. We talked about
fragmentation, but he has pulled 300 entities together. That is
no mean task, and they all talk to each other, I will bet, and
that in itself is an incredible task. So, I think that I would
like to look at this optimistically. While the HIV epidemic is a

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tragedy and while we must deal with the immediate sorrows of
those that are afflicted and those to come, we, also, should not
lose this as an opportunity to turn the nation around in our
sensitivities to others and a whole range of things that we need
desperately.

I applaud the degree to which you have not only
energized yourself and your communities, but you have been
pulling together and influencing people like the Commission to
come up to speed. I am going to send you questions in a letter.
They will be made out appropriately for your background, but I
want to read the questions I am going to ask just so you are
thinking about them. Is Centers for Disease Control the
appropriate, from your vantage point, federal agency to be
conducting education programs on AIDS. Do they consult with
minority groups adequately, and if not, can you make some
recommendations specifically of how you would plan it better
along the lines of our earlier discussion?

Two, how are CBO’s utilizing the Centers for Disease
Control National Clearinghouse? To what degree is it
duplicating your services if at all? Could it function in such
a way that it removes some of the burdens you are currently
having to carry? And then lastly, the rather nuts and bolts
thing, what is the total annual dollar value of each of your
programs? How many people do you serve and how many federal
dollars do you receive for your program, if any, for education,
prevention, care and, also, what are the state fund
contributions, if any? Obviously I am trying to round out where
you stand right now, who you serve, about what it costs and who
contributes to it. I think it will give us a fairly broad data
base from just looking at you as an example.

 

So, those will be questions coming to you. I am not
trying to lead you into any answers, but they have come to mind
during the session here, and this is a special panel, and it has
been very information, very helpful to us, and we know the
tremendous work you are doing. We have seen you in the field.
We have seen you working, what you are doing, your sensitivity
and compassion on this whole epidemic and applaud what you are
doing. Thanks very much for coming today, and we will be
communicating with all of you as time goes on.

MR. MALDONADO: Could I say one thing? Early on when I
spoke about the posters~I used the word "models," and I just
want to clarify that I was not implying that these were
professional models but rather local community people.

CHAIRMAN WATKINS: Thank you very much.

CHAIRMAN WATKINS: The next panel, the last panel, is
on the role of media in educating the public. On the panel is

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Carolyn M. Wean, Vice President and General Manager, KPIX
Television; Marcy Kelly, Chair, Entertainment Industry Task
Force on AIDS; Dr. Armond Brodeur, President, National
Association of Physician Broadcasters and Dr. Lawrence Wallack,
Associate Professor, School of Public Health, University of
California at Berkeley.

Welcome, members of the media panel today and we would
like to start the first statement with Carolyn Wean.

MS. WEAN: First of all, I am very grateful to be able
to be here and share with you my thoughts about what television
can do and what we specifically have been doing. In deference to
some of my colleagues here, particularly from radio, I will say
that television is, while some of us might say the most important
communication source, one of the most important communication
sources for getting out frank and direct information.

I think if we thought back in time to an earlier era
and one not so long ago, when diseases like tuberculosis and
leprosy terrified millions, killed thousands and we could ask
ourselves could lives have been saved if we had a vehicle and an
integrated way of getting out information to dispel rumors, to
get rid of misinformation and to create a compassionate
atmosphere in which to address the problem. I firmly believe
that television can help in that regard and I am also going to
ask you for some things that you can do for us to help us do
this job.

 

We really do have an opportunity to decide whether
this can be done. There is a model in San Francisco. It
involves WPIX Television, a Group W station and in 1983, almost
four years ago, they made a major commitment to covering AIDS in
many, many different ways and this was even before the death of
Rock Hudson, which I think brought AIDS truly to the national
conscience.

They made a commitment, which is quite significant.
It may seem small. They assigned one reporter to cover this
story, this epidemic, full time and in a television news room,
with everything that goes on, making that kind of decision was
quite extraordinary.

The other thing that was done was that we worked with
community organizations. We got advice. We consulted with
people so that when we produced stories, documentaries, over a
hundred public service announcements, we felt sure that the
information that was being transmitted suited the needs of the
audience and was credible and was accurate.

We were among the first, on television that is, to run
programs about how is AIDS transmitted; very specific, very.

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EE

frank, I think sensitive and tasteful, and what we found from
our audience was that this is exactly what they wanted. They
wanted frank and direct information. Talked about how AIDS can
be prevented and what resources are available and how can we
make through volunteerism it easier for AIDS victims to remain
at home, to make it less costly to the individual and to society
to care for AIDS victins.

In just over four years we produced a thousand news
reports; quite an achievement. While the AIDS crisis has abated
-~ I shouldn’t say it quite that way -- certainly the rate of
infection has slowed down in San Francisco and I think in ‘large ©
part the result of many massive education campaigns -- we felt
that there was much more that needed to be done. In October of
last year, Group W, our parent organization, agreed to work with
the World Health Organization to expand what was being done at
KPIX, to create a campaign that could be distributed nationally
across the country, so that any television market would have the
materials, our programs, available.

We are producing documentaries, a weekly news update,
public service announcements, again, geared to special audiences
and even home videos, which parent can use, if they feel the need
or need help to talk to their children about AIDS and ways to
educate them.

 

What is unique is that while this is national in
scope. We allow the local station to take those materials and
adapt them for their local audience because I think that is what
local health television can do. It can address the 230 million
people in this country, but it can address them in a way that
suits the needs, the values, the life styles of the individual
community.

So, we have produced a great array of material. Some
work in San Francisco; others probably work better in some
smaller towns and cities. The project is underwritten by
Metropolitan Life. We hope to reach at least a hundred cities
by the end of the year, making this the largest ongoing effort
in television and we have had great response so far. We now
have potentially almost 50 percent of the country signed up to
carry the program. And, again, they can tailor the materials
for their own specific needs.

We normally charge a license fee for efforts like
this. One, because I believe if people pay for it, they will
use it and they will promote it and it will get on the air. We
are waiving that license fee so that the money can be donated by
the local station that they would have paid to their own local
organization.

So, what we are really suggesting is a partnership
with grass roots organizations. I will give you two examples of

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that which we have had success with in San Francisco. We have
worked closely with AMFAR and the San Francisco AIDS Foundation.
The San Francisco AIDS Foundation helped us produce a brochure of
direct information. We have distributed over half a million.

Currently, we have been approached by Catholic ”
Television to take our materials, our tapes, our programs and to
use them in their own way, to edit them so that they can
distribute them or broadcast them in their parishes and through
their local school systems. So, although we are doing all of
this, there is still a great deal more to be done and, like many
Americans, I think it is easy for broadcasters to become
complacent. We hear things like hasn’t enough been done already.
AIDS isn’t a problem in my community and this is the place where
I ask you for some help in our own effort at KPIX, but for
broadcasters in general.

I really believe we can be helped in three ways.
First, to dispel rumors and misinformation, we need to have the
most accurate, current, up-to-date information available. We
suggest that you give consideration for creating a regular,
perhaps a weekly newsletter or wire service report in which
authorities would make sure that the most current information is
up there, be it information on new treatments or possible
treatments or good programs that are being carried out in the
various local communities. I really believe I can assure you
that broadcasters would use that information, would get it out to
the public and it is information that is desperately needed.

Secondly, I think we as broadcasters still need
education, even those of us who have been working on this for
some years and we suggest a national seminar, directed to
broadcasters all across the country; newspapers, television,
radio. They could be called together in San Francisco. You
have the ability, I think, to amass the experts, to get the
attention, to urge attendance. Such things as models for
patient care, drug abuse treatment, media campaigns could be
studied. I believe the San Francisco experience is valuable.
For instance, the average cost of AIDS care from diagnosis to
death is lower in San Francisco. The average length of a
hospital stay is less and the rate of infection, as I said
before, has declined; in large part, I believe, due to
educational campaigns from so many institutions.

We would be glad to work with you -- "we" being Group
W -- and bring whatever experience we can to help in
coordinating this seminar, but, again, I think it is you who can
bring together the authorities and the experts and pull the
seminar together and make it a national one.

Finally, I really believe that one person can make a
difference, particularly if that person is one who has the power

292

 

 

 
 

 

to unify and to inspire action and to communicate. So, I am
asking, in-conclusion, for the President to step forward to
address the nation. He alone can do this specially, as a person
who doesn’t believe the myths and is a voice for the truth, as a
supporter of massive drug treatment programs, as an encourager of
volunteers, particularly for in-home patient care, as a supporter
of research for drug treatments and AIDS treatment and as a
lobbyist for those who have none, particularly the children with
AIDS and particularly the children of IV drug users, who have
AIDS. Then I really believe that for AIDS patients, the page in
history that is now being written might have a different

ending. I thank you.

CHAIRMAN WATKINS: Thank you very much , Ms. Wean.
Ms. Kelly.

MS. KELLY: Thank you. Mr. Chairman and distinguished
Members of the Commission, thank you for the opportunity to speak
today about AIDS and the entertainment industry. The media is
recognized as a major force in our society, influencing attitudes
and behaviors on many health and social issues. When we look at
the statistics on American viewing habits, it is easy to see why.
Over 98 percent of American households own one or more television
sets and on average keep it on for seven hours a day.

Every week, over 95 percent of Americans are reached
by radio. Currently, about 50 million own a VCR. In a survey
commissioned by the Television Information Office, local
stations were rated at the top of the most trusted institutions
in our country ahead of churches, police and newspapers. It is
obvious from this data that the media needs to be a vital part
of any effort to educate the public about AIDS and of
prevention.

The first network entertainment show to deal with AIDS
was "An Early Frost," produced and aired by NBC in 1985. Since
that time, networks, local and cable stations have begun to air
a variety of news, information, dramatic and comedy shows on the
subject. Public service announcements have appeared in local and
network stations and recently motion pictures have included
scenes and references to safer sex practices. The record
industry has also become involved in AIDS education.

Warner Brothers Records is now developing a public
service campaign on AIDS specifically targeted to adolescent and
minority populations. These PSAs will feature major rock stars
and will be aired on MTV and Black Entertainment Television, as
well as radio stations nationwide.

In August of 1987, the Entertainment Industry Task
Force on AIDS, which I chair, was formed specifically to look at

293

 

 

 
 

 

how the media might help in the current public health effort on
AIDS. Twenty-four organizations are represented on the task
force, including all of the television networks, the Academy of
Television Arts and Sciences, the Directors Guild of America,
the Caucus for Producers, Writers and Directors, Women in Film
and the Producers Guild of America.

The Task Force will be distributing shortly throughout
the motion picture, television and music industries
recommendations on the depiction of AIDS and AIDS-related
issues. Specifically, the task force is asking the creative
community to: recognize that characters in the media with AIDS
should not be depicted only as males, homosexuals, intravenous
drug users or whites; emphasize that there is no evidence that
AIDS is transmitted through casual contact; depict casual sex
only if it is important to the story; indicate consequences of
unprotected sex; include discussion of safer sex and condom use
in appropriate scenes; indicate consequences of shared needles in
scenes involving IV drug use, tatooing and ear piercing.

The Task Force is also part of a major conference for
the Hollywood creative community on the media and the depiction
of AIDS, which will take place on May 21, in Los Angeles.
Underwritten by the Center for Population Options, the American
Foundation for AIDS Research and AIDS Project: Los Angeles, the
conference will include sessions on AIDS and sexual behavior, IV
drug use, teens and babies.

Admiral James Watkins, Chair of this Commission, has
been invited to present the keynote address at the conference.
It is anticipated that this symposium will provide an
opportunity for writers, producers and executives in the
entertainment, an opportunity to learn not only important facts
about AIDS, its transmission and treatment, but how experts on
AIDS feel the media can help in preventing the spread of this
disease.

In summary, I would like to say that I think that
there is a very strong awareness of AIDS in the entertainment
community, a desire to be sensitive to the issue and to promote,
when applicable, positive AIDS prevention behaviors, such as the
use of condoms and clean needles. Casual sex probably won’t
disappear from the screen, but as long as AIDS remains a public
health crisis, there will be a stronger focus on the consequences
of such actions and on taking responsibility for one’s self and
one’s partner.

It would be most helpful if the Federal Government in
its public education activities would include special efforts to
work with the entertainment industry. Music, television
programming and motion pictures provide a tremendous resource
and should not be ignored in information campaigns. Thank you.

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CHAIRMAN WATKINS: Thank you, Ms. Kelly.
Dr. Brodeur.

DR. BRODEUR:: Admiral Watkins, distinguished panel and
colleagues, I am a doctor of medicine and I am Professor of
Radiology and Pediatrics and Juvenile Law in St. Louis. I am
Radiology Director Emeritus and Associate Vice President of the
Board of Governors at Cardinal Glennon Children’s Hospital in
St. Louis, Missouri. For the past eight years, I have been
actively involved in medical broadcasting, radio and television,
but primarily as a health spokesperson and talk show host for
radio station KMOX, an A.M., CBS-owned and operated station in
St. Louis, which boasts one of the country’s largest radio market
shares.

For the past five years, I am privileged to have been
faculty for the annual Networking Workshop of the American
Medical Association, which is a seminar designed to teach
physicians “how to" on radio, television and print media.

I am the first President of the National Association
of Physician Broadcasters. We are pretty fledgling; we are 70
members strong. We are broad conglomerate of electronic
communicators. We became incorporated only about two years ago
and we had our first formal meeting less than a year ago. We
are not limited to physicians, but it was the health
communicator commonality that we physician broadcasters shared
that led us to formalize our relationship.

 

Our most distinguished members include Surgeon General
Koop, Dr. Art Ulene of the "Today Show" and Teresa Crenshaw of
this Commission. We area group of broadcasters who learned
their skills by doing rather than by didactic accreditation and
it is my honor to represent that organization today.

AIDS awareness is our target goal for 1988.
Interestingly, when I polled some of my colleagues recently, we
found that broadcasting AIDS information isn’t going on very
well anymore, partly because everybody else is doing it, I am
told, and partly because AIDS is fast becoming non-news, as news
directors see it from their viewpoint.

The single most important message that we physicians
can transmit to our media patients is responsibility for their
own behavior, responsibility at any age. We should be able to
convince them that AIDS is virtually, not exactly, but virtually
a 100 percent preventable disease. We don’t have all of the
answers. For example, we asked ourselves what shall we do with
that relatively recent report from The British Medical Journal,
which asserts that the free AIDS virus is more plentiful in the
saliva of infected persons than their genital secretions. The

295

 

 

 
 

 

obvious implication, therefore, is that AIDS is more likely
transmitted from person to person during open mouth kissing than
in sexual intercourse.

Now, we physicians have high credibility and we are
talking about a disease that kills its victims a hundred times
out of a hundred and I am hoping that the media representatives
here and elsewhere will help us to decide, for example, what we
really should say about open mouth kissing. Is it better that
we caution rather than to assume that it is automatically safe.
Obviously, the responsibility on all of us is very great.

I am hoping to have a uniquely personal window into
the pediatric part of this epidemic, my specialty, if Cardinal
Glennon Children’s Hospital is successful in its quest for an
ambitious, multidisciplinary AIDS care center now under
consideration. It would be a great opportunity for me to
network the best and the latest to all of my colleagues.

I will close by urging this distinguished Commission,
possibly through the President, to bring together the
advertising resources to be donated by this country’s major
corporations; weld them into a single unified nationwide .
campaign of AIDS education, targeted to each age group. They,
better than anyone else, have the financial resources and the
logistical skills to market the information in a manner so
palatable that it would be absorbed and acted upon. What better
than cartoons and cereal boxes for the children? What is more
effective than rock music and teen magazines for the adolescent?

What better than the standard fare of daily soaps,
sitcoms, skillfully contrives PSAs and public television
programs to educate the adult? I feel that the major
corporations must become partners in this massive network of
information dissemination. Only they are capable of the
logistics of selling anything to anybody.

I pledge the support of the National Association of
Physician Broadcasters to cooperate in whatever manner is
necessary to assure the accuracy of these messages and the time
for action is now. You may refer to my written testimony for
elaboration on my views concerning message effectiveness and I
thank all of you here for the great privilege of having been
allowed this moment with you.

CHAIRMAN WATKINS: Thank you, Dr. Brodeur.

Dr. Wallack.

DR. WALLACK: Thank you. I am pleased to be here
today and I thank you for the opportunity. A recent New York

Times headline declared that "Survey Finds Wide AIDS Ignorance."

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Too many people believe that AIDS can be transmitted casually.
Too many people believe that people with AIDS got what they
deserved. Too many people believe too many untrue things about
AIDS. Ignorance about AIDS is the public health equivalent of a
loaded gun pointed at the heart of our society. I mean,
ignorance not only among the general citizenry, but also among
key policymakers, where it can’t be tolerated. What I want to do
today is just mention a few points to help us develop some
realistic expectations about what the mass media can do in this
terrible epidemic that we are facing.

First of all, it is important to remember that
information does not equal education. Both are necessary, but
not sufficient to change behaviors. Because the behaviors we
are dealing with are very complex, intensive skill development
is necessary. Also, competing messages in the environment run
counter to the kinds of positive messages we are trying to get
across. For example, we have a large advertising industry,
which in great part is based on sexual exploitation as a way of
getting people’s attention and selling products. Well, AIDS
messages in that environment certainly aren’t going to be as
effective as when they are presented in a more responsible
environment. If we are serious about AIDS in the society and
doing something about it, we have to be serious about
advertising. We have to be serious about social change.

 

Second, mass media alone will not be able to change
complex behaviors. Messages must be supported and reinforced by
peer groups and by the larger community. It is in this
community and peer groups where behavior change is going to take
place. Media can play an important role, but when basic change
occurs, it is not going to be on a grand mass level; it is going
to be at the local level.

Third, the content of programs and materials must be a
matter of fact, not of politics or advertising values. This is
key to effectively addressing the AIDS epidemic and getting
people basic information that is true.

Fourth, what can media do? Well, in general, media
can cultivate an environment of understanding and positive
attitudes that support AIDS policies and programs. How can they
do this? The media has a well-known agenda setting function.
Media may not tell us what to think but it certainly tells us
what to think about. Media can keep us focused on AIDS issues so
that we don’t lose sight of what needs to be done.

 

A second function that media serves is to stimulate
public discussion. The more public discussion on the issue of
AIDS, the greater legitimacy the topic has and the more likely
people are to enter into this public discussion. People will be

— - > L

297 4

 

 

 
 

7

 

‘

less reticent to talk about many of these issues that have been
stigmatized over the years.

Third, media can be very effective in localizing and
personalizing the problem to help reduce stigma. It can make
AIDS real on a very personal level in communities all across the
country. This means local media using local people as a way of
humanizing the issues assosciated with AIDS.

Another role that media plays is to stimulate
intermediate behavior change. Media can be very effective in
getting people to call a hotline number and getting people to
call toll free numbers, getting people to go out and get more
information. In other words, media may not be able to present
very complex information but it can take motivated people and
direct them to where that complex information obtained.

A key issue, perhaps most important, is that media
outlets need to plan with local community-based organizations
that are dealing with AIDS issues. The battle on AIDS
ultimately is going to be a local level battle and there is an
enormous amount of expertise in communities. Media
professionals and community organizations have to develop
mechanisms for working together in a more effective way. New
resources will have to be created to facilitate this process.

Finally, I just want to offer a warning about looking
perhaps unrealistically to the media to do too much with AIDS.
First of all, we tend to develop a fascination with media. We
think that if just something gets on television, if just
something gets in the newspaper, then somehow it means that we
as a society are taking care of it. We can’t be misled into
this. We can’t think that just because we get some media
attention, even continuing media attention, that it is a
solution or that this is sufficient. We need all the media help
we can get, but we need it in addition to, rather than instead of
other kinds of more complicated and controversial approches.

 

Also, media -- and I am talking about entertainment
programming here, and news, as well, to some extent -- tends to
focus_on short term or partial solutions. For example, up to
this date, one would think that condoms were the solution to the
AIDS problem in the United States, that more methadone
maintenance slots were the solution to drug abuse and, hence,
the sol olution to AIDS among _IV drug users. This is only part of
the problem. -You have heard a lot today about social factors
and social issues, but, again, the tendency of media is to focus
on very clear concise black and white aspects of issues. The
media are not very good, by and large, on gray issues. We tend
to get a misled about what some of the solutions are..

A third factor is that, in general, media, do not doa
very good job of dealing with controversy or deal with

298

 

 
 

 

controversy in a way that ends up washing it out. By and large,
I believe that mass media avoids controversy.’ AIDS is
inherently a controversial subject dealing with almost
everything volatile in our society'and controversy has to be
part of it.

The media also tend to use up issues very quickly.
We have seen this to some extent with drug ‘abuse and I worry we
will see it with AIDS. People get saturated with an issue.
Every series has their AIDS show for the year or their drug
abuse show for the year and, again, it gives us a feeling of -
satisfaction and we move on. We have to watch the delicate
balance between saturating the public with AIDS messages and
really developing long term educational programs that are
well-planned and coordinated with the other different levels of
educational program delivery.

A final and very important point- is that the mass
media, for the most part, do not address minorities and minority
issues. Unless we do that, we are putting various groups in our
population even deeper into a hole that they are already in, that
there is not going to be any coming out from.

Finally, I think media can doa lot. I think they
have done a lot. I think the AIDS Lifeline show on KPIX is
perhaps a milestone in mass media communication on a major
public health issue and I think it presents a good role model
for other stations. I hope that other places, other cities,
other towns around the country will be as responsive to this
issue as some of the media outlets who have already been
involved. Thank you.

CHAIRMAN WATKINS: Thank you very much, Dr. Wallack.

We will start on the right this time. Dr. Walsh, you
are up to bat.

DR. WALSH: I was very pleased with this particular
panel because, after literally weeks of hearings, we have
finally had the private sector rear its wonderful head. We have
heard so much over the past several weeks of everyone turning to
the Federal Government to supply all of the answers and you have
been very refreshing this afternoon. Se

Your encouraging of the corporate sector to move
forward, which they need to do -- now, I think that in
California, you have certainly had more initiative from the
corporate sector than has been true over the country as a whole.
I know my own experience with them in the work that I do, there
has been a great reluctance to identify with this epidemic, for’
reasons that I find hard to fathom. But, nevertheless, they are
very reluctant to do it. The fact that you feel that they are on

299

 

 
 

 

the move, I think, is very encouraging to me. As a panel, you
seem to feel that way.

I was impressed by the realism, Dr. Wallack, that you
expressed, that the media can’t do everything and that
saturation, when you get it to do something, is a danger. Again,
I go back to the United Kingdom, as I referred to them this
morning. They did an AIDS saturation on the media for a week
Christmas a year ago and absolutely turned off the entire
country. The job was done; the country was not interested.

They didn’t want to see it anymore. They were AIDS’ out, as far
as the media were concerned.

Some of the questions that you raise are interesting
to me and I will give you all the questions and then anybody can
answer. You talked about in California, for example, explicit,
fairly explicit, advertising and so on. Yet, we have found
certainly resistance from the networks on explicit or too
explicit advertising. I think -- when I say "advertising," I am
talking of portrayal -- I hope that you will be able to sell
your theme perhaps to a larger group of the broadcasting
industry. Yet, it was explicit and too explicit advertising
that killed the thing in Great Britain. So, there is a fine
line to which you referred.

Secondly, with the national physicians network, Dr.
Brodeur, one thing that has been apparent to all of us on this
Commission and to those of us who are in the field of medicine,
is that our own profession is among the most ignorant when it
comes to this disease. I am talking as a whole. And we know
the AMA has made every effort. Certainly, in Roy Schwartz, they
have got, I think, one of the really great minds in trying to get
this before the public and before the physicians.

Is the national physicians network doing anything in
the way of education of physicians by automobile tapes for their
cars or anything. I am not going to repeat whac I said this
morning, except that in speaking in New York last night to many
physicians, I found an appalling ignorance of not only disease
but of rules and regulations governing the disease and I wonder
whether you are going to be attempting to do anything because the
physicians themselves are very important.

No corporation, for example, will adopt a significant
program if their in-house physicians don’t encourage them to do
it. And if their in-house physicians in AIDS remain as ignorant
as they do or as they seem to be about this disease, we are going
to have a great difficulty in using that resource and I would
welcome your comments on that.

I think on Dr. Wallack’s thoughts about the industry,
I don’t think the industry has ignored the minorities, as much

300 ,

 

 
 

 

perhaps as you do. From what I see at least on television and I
don’t watch it seven hours a day, I am afraid, but I think what
they have done is they have not been realistic about the way in
which minorities are portrayed or treated and if that is what you
meant, I agree with you, but I wonder, because of the
sensitivity of that, whether anything can be done about it
without running the risk of labeling AIDS a minority disease,
because we don’t want it to be a gay disease; we don’t want it
to be a minority disease. It is everybody’s disease, as we have
said repeatedly at these hearings and it is going to be with us
for a long, long time.

So, there are a group of questions upon which I would
welcome your comments. Anybody.

DR. BRODEUR: Well, Dr. Walsh, I will begin by
answering what I can about the education of physicians. The
National Association of Physician Broadcasters, as I said, is an
independent group of doctors, who found each other because we
were all doing the same kind of thing and in that group,
interestingly, you will find some of the physicians who are the
best educated about AIDS of any, but they do not wag the AMA.
The AMA wags them, among other things.

For about 30 years, and I won’t digress more than 10
seconds, I have been very much involved in the area of child
abuse as a pediatric physician. After 30 years, I am ashamed to
say that there is still an appalling lack of conceptual
information by doctors. What do they do in St. Louis if they
get a difficult case? They send it to my institution and let us
report it. And from what I heard this afternoon, some of the
AIDS physicians, it seems to me -- some of the physicians are
doing the same thing about AIDS.

We will be very happy as a group or individually to go
wherever or for whomever if someone will invite us to go to
speak at their fora regarding the AIDS issue. I can tell you
that we try as a group of broadcasters -- and we don’t have a
national office and a set of files and an executive secretary.
We just are who we are. We would be very delighted to keep
their hands over the fire with regard to AIDS and we do that, I
think, in our individual programs, but so far as having access
to all of the doctors in the United States, we simply don’t have
access.

DR. WALSH: Who prepares those tapes, you know, that
doctors put in their cars, in their cassettes? Is that done by
the AMA?

DR. BRODEUR: That is done by the AMA. There are some
individual private corporations, as you know, that sell -=

‘

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DR. WALSH: Oh, yes.

DR. BRODEUR: -- the review of the journals, but the
AMA puts together those and we have, incidentally, those kinds
of tapes in all of our medical societies. You can dial a
certain number and get a free message about anything, but that
is done by the AMA.

DR. WALLACK: I wanted to address your question about
minorities in the flock in Great Britain. I think as we have
heard today, and I have been here most of the day and I have
been enormously impressed with what I have heard, is that a lot
of organizing needs to go on. We have heard some of the black
representatives say that the black leadership in America wasn’t
really interested in AIDS or at least interested to the extent
that they need to be. So, I think a lot of organizing needs to
go on, where people are brought into this and, again, feel some
sort of ownership of the problem. Feeling ownership of the
problem doesn’t mean that you have got it and it is your problem.
It means being involved in planning and doing something about the
problem.

Now, in the U.S., I think we have a problem with many
of the programs and policies that get developed because
populations get planned for rather than planned with. -.If more
effort went into organizing, especially with minority
populations (and minority populations who often don’t have the
resources to do the organizing, like mainstream populations
do),it would result in substantial progress. So you need to
talk about some sort of capacity building. In terms of AIDS
and minorities, I think if you had better planning, if you had
better market research dealing with the populations, not based
on how much money you have to spend and be attractive to
advertising, but based on the interest of the local communities,
you might see increased participation, increased understanding
and you would see, I think, some of the stereotyping, fall by the
wayside.

 

MS. WEAN: To answer your question about network versus
local television, as to which it should be or which would be the
better for disseminating information, my answer is that both
should be involved. I think that they can do different jobs,
just as entertainment vehicles can do a different job than a
public information campaign. The network by nature of having to
reach across the coasts, the breadth of the country, I think,
has to be more circumspect because they are talking to a larger,:
broader audience. And what local television can do is hone in on
the particular issues that it faces in its community. Local TV
stations understand those communities better and how to speak to
them. .

302

 

 
 

I manage a station in San Francisco. A few years ago
I managed a station in Pittsburgh. The approach that might be
taken in some of the programming or in some of the language
would be very different for those two places. They are both in-
the United States. They both need information. Both
marketplaces want information. All of our research has shown
that but they want to hear it differently and, yet, they want:
accurate and fairly specific information.

DR. WALSH: Ms. Kelly, is a group like the NAB
actually getting deeply involved in this situation?

MS. KELLY: I am sorry. I didn’t --
DR. ‘WALSH: National Association of Broadcasters.

MS. KELLY: I know the organization. They are not
involved with the task force. We would welcome their
involvement. The task force is -- :

DR. WALSH: Is there a reason for it or --

MS. KELLY: No, other than I believe that their |
primary office is here in Washington and the task force is
active in Los Angeles where most of entertainment television is
produced. We would be delighted if they would like to be
represented on the task force. It’ is not a problen.

DR. WALSH: Thank you.
CHAIRMAN WATKINS: Dr. Crenshaw.

DR. CRENSHAW: Ms. Wean, I would like to tell you that
your suggestion for a national conference for people in the
media on AIDS I think is an excellent idea and should probably
be more than a one time event. I think that in addition, if
some dimensions of human sexuality are included, it might even
be able to help some of the entertainment media to, without
making their sexual episodes boring, perhaps introduce a little
more depth and responsibility somewhere along the line. It is
not always easy to do.

- Your suggestion raised to mind perhaps the way that
such a conference and Dr. Brodeur’s organization could
communicate. I know that as media people try to interpret
medicaleze or even talk with physicians who haven’t learned
somehow to speak English in the way that can reach the general
public, it is nice to have an interpreter.

One of the things I wanted to ask you, Dr. Brodeur, ' is
the request was made about getting some press releases on a
fairly regular basis from the responsible body that digested and

303

 

 
 

 

interpreted the information. With the 70 physicians that you
have, in addition to Dr. Koop, would that be one of the
functions that your organizations could provide?

DR. BRODEUR: I will apologize once more for the fact
that we just were born and we don’t have a treasury or a
national secretary, as I said, so that we aren’t doing all the
things that we are capable of doing certainly or that we would
like to do, but one of the things I have managed to do in the
few months I have been president is to get a number of
organizations to receive the mailing list of all of the doctors
-- and I hope that you have been getting material from the
American Academy of Pediatrics, for example, and some of the
major groups -- Art Ulene and his Walk with your Doctor group.
We have not gotten CDC yet in that mailing list group, but we
will. M. D. Anderson Hospital is giving us cancer information
and the answer is a resolute "yes." We would like to have a
number of organizations that are concerned about health in any
way sending us releases and I have asked them if they wouldn’t
mind, simply because -- even though we are, ina sense, medical
writers, I suppose, we would welcome 30, 60, 90, 120 second
material that we could scratch around and make it a lot easier
for us. We would love to do it and I pledge that we will put
it on the air for you.

DR. CRENSHAW: So, you could triage it, put it on the
air and produce it if:you had the resources to do that?

DR. BRODEUR: Yes.

DR. CRENSHAW: I think that you are being too modest
about this little country organization. Perhaps you could share
approximately how wide a population the 70 physicians reach
across the nation, just to give some idea of the scope of the
physicians, who are filtering all this data through the news.

DR. BRODEUR: Interesting that Charlie Fentress, a
partner of mine, an associate in other matters, said to me today
you had better be prepared to tell them just how many people you
reach on a weekly basis and I said, Charlie, I have no idea, but
it is literally millions. My own broadcast on KMOX radio,
afternoon drive time, reaches approximately a quarter of a
million people while they are driving home in any one segment of
time. So, you extrapolate that across the 70 doctors in the
country and the fact that some of their material is replayed that
evening and so on, I would have to guess in the millions, but I
Just don’t know where.

DR. CRENSHAW: So, if you were to receive material
from other sources, it could be distributed widely --

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DR. BRODEUR: Very much so, very, very much so because
we go all the way from Dr. Bill Crounce in Seattle to Dr.
Zenakis in Boston and Joe Fiori in Tampa and Bob Lanier in
Dallas/Ft. Worth, myself in St. Louis, just to name five.

DR. CRENSHAW: Thank you.
CHAIRMAN WATKINS: Ms. Gebbie.

MS. GEBBIE: A couple of things. First, Dr. Brodeur, a
comment and then a question. Thé comment is that I had some
concern what we see happening with the media when something is
presented as an example. You quoted a British medical journal
study about saliva as an example and both had antenna that went
up as to whether that was what we were going to see on the
evening news. "Distinguished Physician Tells Presidential
Commission All Previous Information About Transmission is Now Out
the Window." There is such a difficulty with that process and I
think we all have to look at that very closely.

That leads to my question. It is hard one. It is
easy to get excited about a 70 member group that represents
physicians on the air. Not all physicians I have heard on the
air appear to use judgment about what they are putting on the
air. So that the idea that press releases sent to your group
would automatically yield good education in the community is not
necessarily true.

What sense do you have about the level of continuing
medical education and judgment that is portrayed in the kind of
person who is a member of your society? I know that is a very
difficult question to answer. But do you have some --

DR. BRODEUR: Can I come back tomorrow?

Well, actually, you know, people are people and
everybody has a different DNA molecule going through his systen,
telling him what to do. You can always tell a doctor but you
can’t tell him very much. I must tell you that we don’t have ~--
the NAPB is not a policymaking group to begin with. And,
secondly, a number of the individuals in that organization are
not only highly educated people but many now have had years of
experience in the media.

One of the things that I wrote in my printed testimony
before you was that we expected our physicians to be able to
separate sensationalism from fact. When I mentioned the issue
of saliva, I considered that for a very long time before I said
anything. It has been out since sometime in late ‘87 and this
is the first time I have mentioned it publicly.

305

 

 
 

 

The reason I mentioned it publicly is, quite frankly,
I don’t think -- and I am not an infectious disease specialist.
I am a pediatric radiologist. That is an adult-type radiologist
with the mind of a child. But I do know that you don’t know and
I don’t think Dr. Crenshaw knows nor Dr. Bill Walsh knows for
sure whether or not it is transmissible or contagious if there is
an AIDS virus in the saliva, particularly if someone has just
freshly their teeth, as they might well have and whether or not
it is possible -- if you are talking about Influenza A, I am not
as concerned, or mumps or measles or chicken pox or even
tuberculosis, but we are talking about a disease that if you get
it, the chances are it is a hundred percent.

So, my question is that, you see, if there is any
doubt about the saliva, I think maybe it ought to be stated.
Somebody ought to at least address it because we just don’t
know. We know that handshakes can’t. I mean, that is pretty
certain but I am not sure about what has been referred to as
French kissing.

MS. GEBBIE: In fact, many people will say there is a
difference between salivary contact, meaning if somebody’s
saliva droplet lands on your chin, from French kissing because
there are differential degrees of exposure, not just to saliva
but to the potential of -- your just having brushed teeth is an
example, but, in fact, the point is you can’t have that
discussion in a three second bite. You have to have it for a
longer time.

DR. WALSH: I do think it is important to point out
that despite many attempts to positively identify transmission
by saliva, that with all the thousands of cases throughout the
world, there has never been a single case certified or
demonstrated to have been transmitted by saliva and I think it
is important to point that out.

Medicine is an inexact science. You and I both know
that. We can never make a statement of never, you know, but
there has never been reported.

CHAIRMAN WATKINS: I think that is a very valid point.
It comes up constantly and is one I continue to make because I
believe that from that piece of negative information, we will
also have scientific data. It is not only in that area,
mosquitoes -- we had a question on bedbugs. I think it is
extremely important that we say, we have hundreds of thousands
of cases in the world ~-- the World Health Organization has over
130 nations. They have a tremendous AIDS task force, with Dr.
Jonathan Mann. Nowhere are we getting that kind of data that
HIV is transmitted other than how we say it is. I think that
becomes very important to say.

306

 

 
 

 

I think that perhaps as a scientist and on probability
theory and one thing and another, you can probably postulate a
situation where somehow under some remote conditions -- but the
fact that we haven’t seen it. yet and haven’t documented it seems
to me to need be said more. |

These are the kinds of things that I think become very
important. We had this expose in the paper about early
identification of neurological damage. By the time that gets
through the system before competent scientific authority can
come before us and say, you know, we just don’t have compelling
evidence anywhere to actually prove that. We don’t know how
valid the data is or the Cosmopolitan Magazine article recently
on not to worry, women; heterosexual transmission just can’t
happen to you.

So, immediately on Nightline, fortunately, they put it
in the context, proper context, and the Cosmpolitan article was
refuted. I think that the fanning of fires of the unknown in
this way becomes as detrimental to the national education
process as anything we do.

So, my message the other day to a group of people at
the National Press Club was to make sure they are extremely
responsible. I have to say that I think in this case I have
never seen reporting in any of the media, electronic and
otherwise, that has been more responsible than it has largely
been in this epidemic. I think there is a concern by those that
are close to it and the people I deal with and have had an
opportunity to meet in the written media, for example, they are
experts on AIDS. They are good at it. They know what is right
and wrong and so they write well.

And I think the electronic media has been the same
way. I think that concept is extremely beneficial for the
country. So, I think it is the way we present things that
becomes important. Are we really in the back of our minds
trying to tell people that there should be fear. Or whether we
can make decisions in a calm fashion. I think it is the way we
say that becomes very critical. I chimed in on this because it —
has come up so many times and I am just delighted Dr. Walsh
brought that approach up.

MS. KELLY: I just wanted to say that I think that one
of the reasons that several of us have brought up the importance
of direct communications with the entertainment media, and I
would expand on that to the news media also, is because the
entertainment industry has the potential to reach, to educate and
to inform so many millions of people. If there are questions on
these issues and you don’t want writers developing their stories
based on what they read in the newspaper that morning, then
direct communication is vital. If there is a body, whether this

307

 

 
 

 

be it or the CDC or whomever, that has the consensus of data and
if that body could be communicating directly to people who work
in the entertainment industry, then you would be assured that
they would be representing your point of view.

CHAIRMAN WATKINS: Would you recommend that this be a
clearly articulated function of the CDC clearinghouse that is
being developed now?

MS. KELLY: If that is the appropriate body.

CHAIRMAN WATKINS: Is that the right linkage for a
central clearinghouse, so that people can begin to establish the
scientific validity of this study that has come out of a small
group of scientists here or perhaps the one in a foreign
country. At least we need a cross check or the ability to put
new theories or data in the proper context.

It just seems to me that that network, that exchange
of data before a new study is put out publicly is needed.
Without it, new data tends to float through the country like
wildfire and if we can bring the scientists to bear at the right
moment, it seems to me that second thought becomes extremely
important, particularly at this point in the crisis. I think as
time goes on and the educational process matures that it may be
less significant.

We haven’t educated the very front line of our
educational authority in the health care providers themselves
yet. So, it is a time, I think, for all of us that requires
special caution and I applaud your support for proper linkages
with the scientific authorities to at least cross check
information before it gets fanned out nationwide.

DR. WALLACK: I have made two recommendations in my
paper that I think relate to this issue. Again, if we are in
this thing for the long haul and we have to be, we have to be
talking about increasing resources and capacity building. The
two points that I made in my paper, are (1) that training in
media relations should be made available to all community-based
organizations dealing with AIDS. These people represent an
enormous resource and they don’t serve as effective a resource as
they could, given the information needs that are out there.

A second point was that training in the scientific,
social and journalistic aspects of the AIDS epidemic, should be
made available to reporters. And I think you need to develop
regional workshops for electronic and print reporters, in
different parts of the country. These workshops might be
associated with schools of journalism, or Schools of Public
Health, or with health departments, or perhaps with
community-based organizations themselves.

308

oy

 

 
 

 

Another thing I wanted to mention from a communication
campaign point of view, this issue of fear arousal is very
critical. We are dealing with a problem where we want there to
be some anxiety in the population, but we don’t want there to be
too much anxiety in the population. We want people to think they
are at risk but only if they are really at risk.

You have to worry about stories that raise fear on
people’s behalf and don’t provide them with an outlet to do
something about the fear. This is one of the basic tenets of
fear arousal in communication--if you get somebody anxious about
something, you have got to provide an outlet for action. You
have got to give them a place to go. That is why the linkage
with community-based organizations is so important. If people
are concerned, if they can’t get enough information from the
media and the media probably can’t give them enough information
that is explicit and tailored to their needs, we have to direct
them to other resources.

The other point I wanted to make -- and this also has
to do with the whole notion of how fast and if and when it is
spreading into the heterosexual population outside of IV drug
users and where it is to date -- is that our society doesn’t
mobilized around prevention. Historically, it never has
mobilized around prevention. It is a downstream, pulling people
out of the river kind of society and we wait until the crisis is
here. We don’t look upstream and try and keep people from
falling into the river.

So, if we are really concerned about prevention, we
have to be investing in a lot of resources at this point in the
epidemic that seem like they are not going to pay off for years
and years. This requires a major value shift in American
society: to start thinking and planning ahead, rather than
reacting to these issues simply by providing more and better and
more expensive health care once people are already sick.

MS. GEBBIE: I have a second question and that comment
is a good background for it -- for Ms. Wean and Ms. Kelly. What
has been outlined as a level of commitment and a level of
interest -- maybe it is the hour of the day, but I am being the
designated skeptic here about the question of whether that is
sustainable longer than one season of television shows in which
every prime time show does one show on AIDS and one show on drug
abuse and then off we go and the advertisers never change the
imagery that they put in the ads.

. It seems to me we have heard over and over again that
the message has got to be the same and it has to be coordinated.
So, my question is can you give us some reasonably specific ideas
of what the community as a whole or units within the community
could do to sustain the media industry in this shift that we see

309

 

 

 
 

 

happening in the short term? What could we do to convert it into
a real long term change?

MS. WEAN: It is sustainable. Our experience has
shown that. The campaign has been going on for four years and
we had to ask ourselves is it enough already. What we found out
is that the audience didn’t think that it was because of things
that you all have brought up, the latest rumor makes it cycle
again. No matter how many times you bring up the mosquito issue
and you think you have answered it, it comes back a couple of
months later.

It is a very difficult task to do, one, because of the
uncertainty, the fear. It is sustainable if there is, a
network, an integration between the organizations in the
community and between a panel like this and the media. We have
been able to sustain it because we have had the support, the
time, the energy and even in some cases, the money behind it,
from AIDS prevention organizations, such as AMFAR and San
Francisco AIDS Foundation.

We could not have made up a brochure ourselves that
gave out the specific information. We are not experts. They
were able to do that for us. We were able to pay the printing
and also then we have the outlet to say this is available.

Write in. Go get it. And then they could address some other
communities that maybe we can’t reach, particularly through
public service announcements and news, the IV drug user. That
is a very difficult community to reach and we are working to try
to discover some things like that.

So, I think that if you get the cooperation, it is
sustainable because we can produce the programs. We can produce
the brochures. What we can’t do is keep up with the information
alone. That is why we have been able-to sustain it for four
years and now have made a nationwide commitment for a year
because we have these organizations working with us. We have
sponsors who signed up recently, advertisers, but some who have
been with us from the beginning, such as Chevron of San
Francisco, so that we aren’t bearing the total cost of it; be it
in people time or in money, we are being supported.

MS. KELLY: I agree -- Dr. Walsh, you brought up the
point of saturation. I agree that is a potential problem and I
think it is one that everyone who works in public information
has to be very sensitive to. I would hope that all of the
agencies within the Federal Government that are developing
public information campaigns are coordinating with one another.

There are an enormous number of public service
announcements being produced at this point on the national and
the local level. I have great concern that they are all being

310

 

 

 
 

EE

done at the same time and being thrown at the stations at the
same time and, as someone on an earlier panel said, an
individual, a public affairs person, has to decide which one
they are going to put on. |

| I think one way to sustain it and to eliminate the
saturation is for there to be a very strong coordinating body,
‘if you will, or individual.

In terms of shows -- Larry brought up the disease of
the week kind of show; you know, everyone does their drug abuse
show, their alcohol show, their AIDS show, whatever, and that is
a reality and it is problem.

I think, however, in dealing with AIDS that there are
many ways to deal with it without doing a, quote, unquote, AIDS
show. I think that writers, producers are becoming more
concerned, for example, about how much casual sex is on
television. Without even introducing the word "AIDS," one can
introduce the use of condoms.

I think, as I said in my testimony that we will
probably be seeing more marriages. I think there are ways of
incorporating what you want without every show dealing with
AIDS. The reality of it is there are a finite number of
programs that only produce so many shows a season and you are
only going to get so many of these anyway. I hope I have
answered your question.

 

MS. GEBBIE: At least partially. If you think about
or if your group meets and talks about it, you could send us back
some comments on what is it we can tell community-based
organizations to do to be helpful to you or what it is that
state health agencies or hospital groups or the physician
broadcasters or the CDC could do that would give you the back-up
to -keep moving. I am truly more interested in those image
shifts than in the show of the month effect.

MS. KELLY: Well, let me just say that I think part of
it goes back to what we keep saying, is the linkage. Your
ability to sustain is directly related to your ability to feed
information that is new and is interesting. I also invite the
Commission to provide whatever information you like at the May
21 conference that we are doing in Los Angeles, that is
specifically targeted to writers, producers and people who
create entertainment programming. We are still in the formative
stage of that conference. If there are specific issues that you
feel that you would like to bring to that public, I am delighted
to assist you in doing that.

MS. WEAN: I can give you two specific examples of how
information can be distributed to the media. One is locally,
the San Francisco AIDS Foundation -- I am sure there are other

311

 

 
 

 

groups in other communities -- puts out a media alert with
information, updated information that has proven to be very
useful. They also are very available to us.

It is not an official media hotline but I am sure they
feel it as such. And during October, during AIDS awareness, the
CDC mailing of information and events and so forth was very
helpful. I think on a consistent basis that does need to
happen.

CHAIRMAN WATKINS: Is that continued, Ms. Wean, that
mailing you talked about?

MS. WEAN: The San Francisco AIDS Foundation, yes. I
don’t think the CDC has continued. I am not sure about that.

CHAIRMAN WATKINS: Do you have an idea of what an
information flow or exchange might be from your vantage point?
Here we had today Gil Gerald of the National AIDS Network,
coordinating with 300 different entities nationwide. We have so
many national groups now; the AIDS Action Council itself is into
50 states with all the variety of organizations and there are
certain networking potential there for the right contact points.
We obviously need work from national authority that can get into
the latest front edge of technology and answer some questions,
much as I brought up with the limited reports of early
neurological damage being so widely publicized and not into
context.

What are you missing? What are the voids in the
information flow that you would like to see hardened up a little
bit, just flowing to you, not directing, but just giving you
information? Do you have some ideas of how that might be
enhanced? Let’s take federal and then state, maybe from public
health standpoint, if that isn’t in your linkage now, and
something that might be conceptually useful for us to recommend,
a much more aggressive action to pull that together.

MS. WEAN: I would like to give that some more thought
and give it to you in writing if I could.

CHAIRMAN WATKINS: Would you do that? That would be
very helpful.

MS. WEAN: But I think the CDC model in October is a
beginning place that I would book and use that example as a
starting point.

DR. LEE: Am I on?

CHAIRMAN WATKINS: You are on.

312

 

 

 
 

 

DR. LEE: I saw the lights and the camera and realized
that the beautiful people were here. When we first outlined our
work, the media and what they could do for us was listed very,
prominently under our education section. I think that we are
late in getting to it. As any presidential candidate knows, 30
seconds on prime TV is worth 14 weeks on the campaign trail.

If we want to sell our message or a message, that has
to be one of the things that we look at. Now, we have proposed
among ourselves having a media and PR type of advisory council.
The Admiral, our chairman, is somewhat reticent, unlike most of
the rest of his Commission members, and he feels that he wants
to stay away from that, but maybe we can get him to change his
mind.

I would ask you what is the best way to interface with
your industry because it would do us a lot of good. It would do
the cause a lot of good. It would do all these people on the
panels before us a terrific amount of good and I think we are a
little bit unsure about the mechanisn.

MS. WEAN: I would suggest that there probably are
several ways, in effect. I think certainly the kind of task
force that has been described here, would be useful. I think it
would be very useful to have -- and this is from a local
television and a news~-gathering point of view -- some hotline or
some designated authority who would be available on both a
national and a local level, to answer questions, to dispel the
current rumor once again and give us the precise information.

DR. LEE: That would be terrific. You know, if we
could -- you know how we started off?

MS. WEAN: Yes.

DR. LEE: Okay. If we could work with the media here,
I think it would be a terrific plus myself.

MS. WEAN: And I do believe the task force and
seminars, be it on a regional or on a national level, and urging
by this panel for broadcasters to attend and from the executive
‘office itself, could be very useful in getting those
broadcasters, who have not yet signed up, so to speak.

CHAIRMAN WATKINS: There was a recent session in New
york with several hundred people in your business coming
together on this very issue, the one you just raised. I would
call it a seminar. It lasted a couple of days with a lot of
working groups and a tremendous amount of interest. I think it
is the first one that I have seen.

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I don’t know how widely it was aired with all of you
but I certainly think you are right on the mark on that and this
is where a lot of linkages could be started and established and
then made more permanent as you need those. If the President
feels our strategy is in the right direction and wants to pick it
up as his legacy and if he wants to pass that baton along to his
successor, then we have the hope that there will be a sustained
long range effort. We have got to get really-serious about those
longer term linkages that aren’t going to go away as we talked
with the community-based organization networks. ~ They are going
to have to be here to stay for quite awhile-until we can get our
arms around this epidemic.

So, we are looking at a whole new system in the
country of talking about health. When we got the information on
sexually transmitted disease increases yesterday, it is very
worrisome to us that we tend to focus on one issue and we can’t
grasp the broader set of issues that are all intertwined in
that. We are going to have to stay close to these for quite
awhile. They are not simple to solve. We have set a ten year
program just in one area. That kind of commitment to a
sustained approach is necessary if for nothing else than to tell
the little people working at grass roots that there is some help
on the way and not to worry; it is not just a one-year budget
cycle.

I think there has been a great fear out there for’
grass roots voluntarism and other people who want to help, that
there will not be sustained support coming. I think the
integration of the media into the education process in perhaps a
unique way that hasn’t been there before is very important. The
national public radio people have done a tremendous job with
this, along with the C-SPAN and CNN, covered a lot of these
hearings and allowed the dialogue with the best witnesses in the
nation taking place. And I can’t tell you how many people are
talking about the fact that they watched an entire set of
hearings, which I think is impressive, that people have that kind
of interest.

When UCLA opened up their AIDS course, a couple of
thousand applied. They couldn’t squeeze them into a 500 person
auditorium. When I was in Louisville, they had to open the
additional tiers up above in the theater and people had to come
to hear about AIDS on a panel I was on with Randy Schultz and
some other people. So, there are tremendous opportunities here
right now to grasp this and to move it together in a
collaborative way. So, I think your intense feeling about
getting those linkages set up so that you feel comfortable that
you are playing the game in a professional and competent way and
you feel comfortable that what you are doing is in
synchronization with the community-based organizations and the

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other people that are really networking this and have the same
drive and enthusiasm you all do, I'think, is extremely important.

DR. LEE: Does Ms. Kelly have anything --

. _ MS. KELLY: . Well, I guess I would just like to add
that within the media there is a very important distinction
between the news and, information and the entertainment or
programming side. They have very specific and different needs.
The people who work on weekly shows or daily news shows have
their own time line. and people who are creating programming for
network television or cable television have, other calendars.

So that if you should recommend or through your
recommendations. have developed an office to deal with it, it
should be noted that there is a difference in the way you reach
these two populations.

CHAIRMAN WATKINS: Anyone else have any further
questions? We want to thank this panel very much. We have been
waiting for this for some time to bring it to the Commission’s
attention and I think you have been wonderful witnesses. We
thank you for staying this late. hour with us and hope that we
can continue the dialogue with you.as time goes on. The door is
open to us at any time for the exchange of views. I have asked
for some additional information and always you can write and you
will get up to the top of the priority list in response because

you have been great witnesses.

Thanks very much: and we will stand adjourned until
tomorrow morning at 9 o’clock.

(Whereupon, at 6:07 p.m., the, hearing was recessed, to
be reconvened at 9:00 a.m., the following morning, Thursday,
March 3, 1988.)

 

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