written testimony and CV for:

Congressional Sub-Committee on Human Resources
Committee on Government Reform and Oversight

Hearing-

“AIDS: Toward Long Term Treatment Options”

Friday, February 20, 1998

9:30 am at Borough Hall, 209 Joralemon St, Brooklyn NY

from:

Mr, Jules Levin

Executive Director, National AIDS Treatment Advocacy Project (NATAP)
72 Orange St #3C

Brooklyn, NY 11201

ph: 718 624-8541

| am pleased and honored to have this opportunity to express my feeling about some
subjects of great importance to me and to people with HIV. | want to thank the good
Congressman, Edolphus Towns, for inviting me to address this hearing. | also appreciate
that this committee is taking the time to explore and leam about this subject. Improving
treatment options for pationts with HIV is crucial to the lives of people with HIV and
towards stemming the tide of this health epidemic.

Today, | will discuss subjects about which | am the most intimately involved with and
therefore have the most knowledge about, ones that | feel the most strongly about. These
subjects are ones that are extremely crucial to stemming the incidence of HIV, to
extending the survival of peopie with HIV and to improving their health.

We have therapies capable of extending survival for people with HIV by greatly
suppressing the levels of HIV in a person's body. Today, | am going to talk about several
important issues related to trying to maximize this capacity -

* Too often, primary medical care for HiV does not reach the appropriate standard of
care

* There is a lack of adequate education and consequent knowledge about treatment
(among doctors, patients and other related supportive professionals) causing this
inadequate care which leads to inappropriate and suboptimal treatment

+ HIV is a unique disease. It is the only one where the patients have been so empowered
to take care of their own treatment. Additional patient education is crucial

+ There is a need to increase funding for ADAP


123

Mr. SHays. Let me just tell you, it’s very important that -you
made that point, because while it’s obvious, t it would be the
case, now that you've said it I would never have put it in that per-
spective. I really appreciate that. I appreciate your comments,
but that one particularly.

Ms. SAccoNne. Good afternoon, thank you for the opportunity to
speak before you. My name is Denise Saccone, I’m a social worker
and a creative arts therapist at Interfaith Medical Center, formerly
over the St. George Project. I say “formerly” because the St. George
Project was not refunded for 1998.

‘ou heard testimony from Cameron Craig, who was a product of
that program. It was a very innovative program, the first and only
peycho-social, choeducational yerogram, in Brooklyn for Reo le
living with and AIDS. We, as the woman from SUNY
Downstate mentioned, were devastated back in November when we
found we were not being refunded. We scrambled in vain to find
additional funding.

The hospital is a very poor hospital and could not find funding
within itself to refinance us and keep us open. Losing the funding
at St. George was not only devastating for staff, but also, obviously
for the clients. We couldn’t find them replacement services. We had
a discl e planning day where we invited different agencies to
come in. There was no other agency that provided the services in
the way that we provided them for us to disc! e our clients to.

The closest we came was the Jewish Board AIDS Day Program.
However, you have to have an AIDS diagnosis to belong to that
program, whereas at St. George, HIV infection was all that was re-

quired.

The additional plight of Interfaith Medical Center is that it is a
federally designated AIDS Medical Center and now finds itself in
the year 1998 only able to provide medical services through their
primary AIDS service and ugh their TB clinic. All other sup-
port services were defunded; the HIV/AIDS Women Health Initia-
tive, the St. George Project, and the day treatment program that
dealt with the substance abuse issue. Other panelists have clarified
how important it is to address all the needs of these clients. Thank

you.

Mr. Suays. Thank you.

Mr. Taveras. Good afternoon, I'd like to first thank the commit-
tee for allowing the public to speak. My name is Frank Toveras,
Tm a coordinator for the FACT Program, by substance users, for
substance users, a product of Exponents, Inc., of the Bronx.

Tll make my statement now. My statement says that HIV and
AIDS and substance abuse go hand in hand. New York City, New
York State and the United States. Because of the fact that peer ori-
ented, peer delivered services have been frowned upon, funding has
gone away from that. This is a total disgrace to the fact that HIV
and arp was first fought by peers, by people living with HIV and

We need to go back because the community has to take part in
the rebuilding of itself. Professionals can come in and teach, but
the community, the ople in the community, are the ones that are
ultimately responsible for building that community back and need
to play a critical part. And third is that this whole system of sub-


25

benefits. will lose these benefits by September 30. 1998. Many individuals with AIDS in New
York City currently have PRUCOL status under a program called voluntary departure. and could
lose their health care access due to these changes. We would urge the Congress to look closely: at
the impact of these changes. which we believe unfairly hurt thousands of HIV-infected New

Yorkers.

Conclusion

We would, of course. be happy to discuss any of these issues further with the Committee
or your staff. We very much appreciate your concern about the issues we have raised. and look
forward to continuing to work with you to meet the needs of all people in New York City who
are infected and affected by HIV and AIDS. Thank you again for inviting us to present this

testimony to this Congressional Subcommittee.


COMMITTEE ON GOVERNMENT REFORM AND OVERSIGHT
DAN BURTON, Indiana, Chairman

BENJAMIN A. GILMAN, New York HENRY A. WAXMAN, California

J. DENNIS HASTERT, Iilinois TOM LANTOS, California

CONSTANCE A. MORELLA, Maryland ROBERT E. WISE, Jr., West Virginia

CHRISTOPHER SHAYS, Connecticut MAJOR R. OWENS, New York

STEVEN SCHIFF, New Mexico EDOLPHUS TOWNS, New York

CHRISTOPHER COX, California PAUL E. KANJORSKIJ, Pennsylvania

ILEANA ROS-LEHTINEN, Florida GARY A. CONDIT, California

JOHN M. McHUGH, New York CAROLYN B. MALONEY, New York

STEPHEN HORN, California THOMAS M. BARRETT, Wisconsin

JOHN L. MICA, Florida ELEANOR HOLMES NORTON, Washington,

THOMAS M. DAVIS, Virginia Dc

DAVID M. McINTOSH, Indiana CHAKA FATTAH, Pennsylvanii

MARK E. SOUDER, Indiana ELIJAH E. CUMMINGS, Maryland

JOE SCARBOROUGH, Florida DENNIS J. KUCINICH, Ohio

JOHN B. SHADEGG, ‘Arizona ROD R. BLAGOJEVICH, Ilinois

STEVEN C. LATOURETTE, Ohio DANNY K. DAVIS, Illinois

MARSHALL “MARK” SANFORD, South JOHN F. TIERNEY, Massachusetts
Carolina JIM TURNER, Texas

JOHN E. SUNUNU, New Hampshire THOMAS H. ALLEN, Maine

PETE SESSIONS, Texas HAROLD E. FORD, Jr., Tennessee

MICHAEL PAPPAS, New Jersey —

VINCE SNOWBARGER, Kansas BERNARD SANDERS, Vermont

BOB BARR, Georgia (Independent)

DAN MILLER, Florida
Kevin BInGER, Staff Director
DANIEL R. MOLL, Deputy Staff Director
WILLIAM MOSCHELLA, Deputy Counsel and Parliamentarian
JupiTH McCoy, Chief Clerk
PHIL SCHILIRO, Minority Staff Director

SUBCOMMITTEE ON HUMAN RESOURCES
CHRISTOPHER SHAYS, Connecticut, Chairman

VINCE SNOWBARGER, Kansas EDOLPHUS TOWNS, New York
BENJAMIN A. GILMAN, New York THOMAS H. ALLEN, Maine
DAVID M. McINTOSH, Indiana TOM LANTOS, California
MARK E. SOUDER, Indiana BERNARD SANDERS, Vermont (Ind.)
MICHAEL PAPPAS, New Jersey THOMAS M. BARRETT, Wisconsin
STEVEN SCHIFF, New Mexico DENNIS J. KUCINICH, Ohio

EX OFFIcio
DAN BURTON, Indiana HENRY A. WAXMAN, California

LAWRENCE J. HALLORAN, Staff Director and Counsel
Marcia Sayer, Professional Staff Member
R. JARED CARPENTER, Clerk
CHERRI BRANSON, Minority Counsel

ap


119

FACT SHEET REGARDING THE IMPACT OF LOSS OF RYAN WHITE FUNDING
ON HAITIAN WOMEN’S PROGRAM CASE MANAGEMENT SERVICES

1, Problem Statement:

Haitian Women’s Program, (HWP), a not for profit community based organization was
established in 1981. HWP currently provides comprehensive case management to a total of 140
HIV positive Haitian refugees and immigrants residing in Brooklyn. Recent Ryan White funding
cuts have left Haitians with virmally no case management services that are culturally sensitive
and linguistically appropriate in Brooklyn. Ryan White funding has not been awarded to any
not for profit community based organizations in Brooklyn for case management services. Four
Haitian organizations did not get refunded for case management services in Brooklyn: Haitian
Centers Council, Haitian Community Health, Information and Referral Program, (Lakou Lakay),
and Kings County Hospital. HWP was the largest of these Haitian funded programs employing
four case managers and a social worker. In addition, HWP is the only Haitian agency that also
bas other related AIDS services program such as Housing, Education and Tuberculosis screening
to complement its existing case management services. Ryan White funding constituted one-third
of our agency's budget. The recent discontinuation of Ryan White funding will not permit HWP
to adequately provide the clients with the following services:
© Permanent housing search and placement
© Assistance with applying for medical coverage
© Assistance with immigrant issues
© Escorting clients to medical appointments
© Conducting Home and hospital visits
© Advocacy for client rights

© Intervene when clients are being discriminated against because of HIV status, culture,
color, lack of language

. Assistance with permanency planning, living wills and health care proxy

°. Provide clinical crisis intervention and referral to mental health providers

e Education on ESL and literacy

. Education clients on service systems; HIV prevention; tenants’s laws and rights

© —Escort/translation services through our Buddy volunteer program

2


68

No. 2, I'd like to talk about infected women who are being im-

with the new welfare to work regulations. For many women

their rs have already died and they're the sole support of

their families. Even with the new medication, these women’s health

systems are more vulnerable to eral infection and complications

resulting in absenteeism and subsequently they're at greater risk
for jo} SS.

We need to redefine disability qualifications. In addition to frag-
ile impaired health systems, these clients often experience a gen-
eral malaise, exhibiting chronic tiredness, nauseousness and over-
all weakness as side effects from the medications they are taking.
These maladies cause them to be Poor candidates for good work at-
tendance, not through any fault of their own.

Another interest or issue for me is medical coverage as a critical
need for this population. For those clients who are able to return
to work, they need guaranteed low cost medical coverage. Why is
the Government carrying the full burden of medical costs for these
clients? Medical insurance companies need to accept part of the
coverage for these clients and the Government needs to use its buy-
ing power to buy low cost medical insurance and then partially
subsidize the coverage to make it readily available to this popu-
lation. A critical aspect of care for this population is also the need
for drug treatment programs. Significant numbers of these patients
do very well on the new medication, medical treatments, but their
prior lifestyles of drug use puts them at continued risk for medical
problems and legal correctional problems. And there is a continuing

ck of drug treatment for women, especially women with children.

Another new issue, this is very, very new, some subtle drug fail-
ure is now apparent with the new treatment medications and NIH
has verified this with me. I am seeing some patients who are ex-
hibiting neuropsychiatric symptoms, although they're having very
good physical response to the medication. There appears to be
chronic psychiatric impairment with specific neurological symp-
tomatology, such as loss of decisionmaking ability, loss of acute and
cognitive function and memory impairment.

in addition, people are living longer with this disease, and their
fragile health systems will experience the additional burden of nor-
health care issues inherent in aging, and we need to look
ahead and have the vision to propose future responses for these
lenges.

In response to these concerns I in the record have the model of
service provision that Evergreen has provided and I'd like to share
that, if you'll look through record. you very much.

[The prepared statement of Ms. Demarrais follows:


719

at youth groups and lesbian youth groups to come to Shades and talk about HIV
prevention. Once there, the Shades youth group introduces the idea that lesbians,
too, need to think about, practice and negotiate safer sex when they have sex with
women or men. Most of the young women who come to Shades are between 15
and 19, and are already sexually active. Most of the young women have questions
about whether they need to practice safer sex. [ do not insist on safer sex because
1 don't want to force on them my opinion about safer sex. Instead, | show them

how to practice safer sex, if they want to.

The youth group is administered by a professional Shades of Lavender staff
member. As the youth participants gain more experience with the group, they
become more involved in suggesting discussion topics, doing outreach,
responding to each other, answering each other’s questions when they know the

answer.

Shades is one of two or three groups that I know about that is specifically
geared towards young lesbian or bi-sexual women. It is one of the only places in

New York City that such women can come to ask questions about HIV prevention


15

therapy. which has become. essentially. the “gold standard” for HIV care. for those patients
whose medical status warrants it

The new standard of HIV therapy creates a range of opportunities and challenges for the
HIV service system in New York City. For the first time, we have a demonstrable ability to
prolong life for most HIV-infected individuals. to improve the health status and level of
functioning for many if not most patients. and to roll back disease progression for some who
have been seriously ill. But accomplishing these things. particularly over time. will not be easy.
The new drugs are not a cure, and until another generation of drugs comes along or further
research demonstrates that these drugs have the ability to clear HIV from the body or to render it
harmless. the reality is that people must continue to take these drugs indefinitely. And they are
not easy to take: each of the three drugs in the combination must be taken two to three times a
day. on varying schedules. before. during or after meals. and often with accompanying side
effects. Thus. helping people to maintain adherence to HIV treatment has become a larger

challenge.

New
Since the time that protease inhibitors became available. and as triple combination
therapy has become the standard of care for many patients. New York City has been committed
to ensuring access to this regimen for all HIV-infected individuals for whom itis indicated. To
ensure effective access. two things are necessary: First. there must be systems in place to permit

patients to obtain the drugs despite their substantial cost. often $15.000 or more per year.


128

‘Statement of

Derek Link
Director of Federal Affair

GMI welcomes the opportunity to present written testimony to the subcoramirtee. We would
like to discuss the need for ax increased undermanding of HIV infection trends in Brooklyn and
indood in all of New York City. While priznary responsibilty for monitoring the epidemic rests
i | government should malce increased
eanuroes available for local jurisdictions to fight the epidemic at the community level

‘After seventeen years and racire than 400,000 deaths, AIDS cea almost unrecognizable from

now Wing ger and att Eve sad prea anni us bom arsanay toe
‘These advances pose » fundamental challenge to the system used to monitor and track the

the tic ‘tnd greeter access to medical care have
helped thousands ramain heakhy and AUDS-free for longer periods of time. The current AIDS-
based murveillaace nyse is 20 tanger an effective measure of the true extent of the epidemic.

‘Today, ab in 1981, we know little about HIV infection trends, and this lank of information is
endangering lives and underkining our efforts to fight tho epicemic.

Surveillance data play # crucial role in batiting the epidemic. Surveillance data help answer vital

OF HIV prevention programs: Surveilence data can be used to allocate resources to hard-hit
‘regions and communities.

Anew
‘should coual the aumber of people who are inflected with
‘HIV in addition to the saumber of people who have AIDS. HIV surveillance should be designed

Rao7K. 719 650 4502 03-20-98 08:15°M FoI) #97


184

Page 4, Testimony
information on new HIV treatments, the proper protocol for taking protease inhibitors and
other potent HIV-related medications, gave cooking and shopping lessons, assisted people
with benefits advocacy, and served as a gathering place for the exchange of HIV/AIDS
information in a supportive atmosphere.

Many came to these meals having no other source of food, while others came for
referrals to health care centers, supportive counseling and substance abuse treatment
programs. This was the only provider of hot meals and nutrition counseling for the
communities of Brownsville, East New York, and Bedford Stuyvesant.

This provider recently lost all of its Ryan White Title 1 funding which supported
these services, and on March 1, 1998 will close its kitchen and layoff its staff. Funds from
this program were shifted to programs in Lower Manhattan who claim they will serve these
communities. Historically, however, City-wide programs have been able to reach very few
Brooklyn residents and most go without where services are located in Manhattan.
Manhattan, with its wonderful decline in new AIDS cases, now has seven (7) food and
‘nutrition program while Brooklyn, with the largest HIV/AIDS population in the City has one
located in Williamsburg whose capacity is 35.

The lost of this food program many predict will result in much higher emergency
medical costs for those who no longer have access to good nutritious meals and referrals
for critically needed services. Consolidation may be “penny-wise” but it is certainly
“pound-foolish’.

Increased Need for Client Advocacy/Legal Services by Attorneys and
Advocates With Expertise in HIV Legal Issues and Health Care Delivery
Systems

‘The second approach to ensuring access to appropriate HIV-related medical care,
benefits and supportive services is to increased dramatically the number of trained legal
staff available to communities of high need. While funding for attorneys is not the mhost
popular or easy to sell request, the critical need for increased numbers of legal staff with


14

Mr. Suays. Just in your second page outline you said there are
psychological support groups that are not being offered. What’s the
point of that in your statement?

Ms. DEMARRAIS. The variety which are offered, that are critical
to the issues themselves and these help with drug compliance
medication compliance. Clients come in, they share with us, “I
don’t want to take this, I’m having a tough time,” and they encour-
age one another at the support group meetings. We find we're hav-
ing much better drug or medication compliance because of this en-
couragement of one another, “I’m in the same boat as you are, but
Tm taking, I want to be alive for my children” is what they’re say-
ing, “I want to be alive next year.” It’s a good system. Life to life.

Mr. SHays. We'll cover more in our questions. Thank you.

Ms. MEYERS. I’m Christine Meyers, I’m 21 and I’m a peer educa-
tor of Shades of Lavender, which is funded by Brooklyn AIDS Task

‘orce.

I lost my cousin to AIDS before I started volunteering and as
time progressed more and more of my friends died from AIDS or
became infected with HIV. It wasn’t a question for them of being
safe, it was a lack of information that they needed to know. No one
talked to me about the dangers of unsafe sex, they were not given
a choice about safer sex.

Ik to young women about how to use dental dams and
condoms, young women who are bisexual and lesbian, I show them
safe sex is important. The young women I teach this to actually
take this information and use it wisely. Youth listen to youth, as
opposed to youth listening to adults. My group is small and we
form a rapport before we start talking about sex. I make them feel
comfortable enough to ask questions about sex. My peers now bring
up safe sex with their partners. I give explicit safe sex information
which they can use to negotiate their own safer choices.

At first I was a participant at Shades of Lavender and then be-
came a volunteer as well. Shades of Lavender is a Brooklyn-based
organization that does AIDS outreach services in Brooklyn. Anyone
is welcome to come to Shades of Lavender. I have been a partici-
pant at Shades of Lavender for 2 years. Shades is geared toward
women in general and lesbian and bisexual women. I feel person-
ally that lesbians are considered the lowest risk group for people
infected with HIV or AIDS. I think we should be considered as
much a risk as anyone else. BBLYS, which is Brooklyn Bisexual
Lesbian Youth Sisters, is a program with Shades of Lavender,
which introduces the idea that lesbians too need to think about,
practice and negotiate safer sex when they have sex with women
or men.

Most of the young women who come to Shades or BBLYS, actu-
ally are between 15 and 19 and are already sexually active or at
a loss as to what to do. Most of the young women have questions
about whether they need to practice safer sex. I do not insist on
safer sex because I don’t want to force on them my opinion about
it. Instead I show them how to practice safer sex if they want to.

BBLYS is administered by a professional Shades of Lavender
staff member. As the youth participant gains more experience with
the group, they become more involved.


32

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103

Gwen Carter Testimony
HIV Prevention Alliance of New York City
Page 8

capacity needs in a manner that has not been achieved to date. It is anticipated
that the needs assessment will uncover needs which we will not be able to address
in the first year of the project. Addressing these needs will become project
priorities in the second year of the project. In addition, the strategic planning
process will use findings of the needs assessment process to develop plans for
encouraging service collaboration, identifying funding opportunities and addressing
gaps in service delivery. These too will be core activities in the second year of the

project.


39

We have just completed a redistribution. We actually expect
about $46¥2 million will be distributed to community-based organi-
zations beginning in March, which is when the new Ryan White
program starts, a few weeks from now, and the outcome of the
process shows that actually we've distributed, I think, more money
to locally based community organizations than we have in the past.
There is still certainly funding which is going to citywide agencies
and we believe that’s necessary for two reasons.

One is that there are some services which are very resource in-
tensive, that are expensive to provide, that doesn’t necessarily
make sense to replicate in every community around the city and
second, that we believe it’s important to make sure that every HIV
infected person, no matter where they live in New York City, has
access to every service. It would be nice if we had enough funding
to fund a provider in every service category in every neighborhood,
but unfortunately we don’t.

But in fact, about 75 percent of the grants we made to commu-
nity organizations are to organizations that are based in neighbor-
hoods around the city and distribution, as we’ve analyzed this
and we would be happy to provide this information to the sub-
committee, shows that in fact the four outer boroughs, and Brook-
lyn in particular, are receiving a share of those awards which is ac-
tually greater than the proportion of living AIDS cases. For exam-

le, Brooklyn, which has ‘about 24 percent of living AIDS cases in

lew York City right now, received approximately 32 percent of the
grants that are directed to particular boroughs or to particular
neighborhoods, so we feel that the distribution between the pri-
marily Jocally based services that we’re funding, and sort of a fall-
back network of citywide agencies to make sure that every part of
the city is covered, is the best way of making sure that everyone
in New York City has access to all the services that they need.

Mr. Towns. nk you yery much. Let me move very quickly to
another one. I want to see what we might be able to do in Wash-
ington. How does the city of New York in HIV infections and AIDS
compare to other cities in the United States?

ir. Cruz. I didn’t hear part of the question.

Mr. Towns. How does our situation com to other large cities
in the United States, the AIDS situation, for example, the amount
of people that have AIDS and HIV. In other words, comparing to
other cities. Let me tell you why I’m asking that. Nydia elézquez
and Jerry Nadler in icular and Congressmen Owens and
gel were involved with me in terms of trying to change the formula,
and in terms of, I think that’s important, that’s the reason I’m ask-
ing this question, I want to make sure that we're doing everything
we can do on the Federal level as well to deal with this problem.
In other words, I’m trying to be fair.

Mr. Cruz. OK, because I represent the State, my answer would
be related to changes in the formula that will impact the whole

tate.

In regards to the situation of New York State and the HIV/AIDS
situation, we have the biggest epidemic. You heard from Dr. Gil
that we have 16 percent of the cases, but we only have 2 percent
of the ulation, and I think that’s the best example that you
have of the magnitude of the problem. In terms of the resources,


64

Neighborhood Linkages. In my experience in dealing with these aforementioned
organizations and others like them, they are vital connections to the people with HIV in
their neighborhoods. These AIDS service organizations (ASOs) have an irreplacable
relationship with their clients. Their clients fee! comfortable in their neighborhood ASO
and are not likely to travel to St Vincent's Medical Center or New York Hospital in
Manhattan for treatment or treatment education. NATAP visits these ASOs once a month
during the 7 month project to deliver treatment education. This linkage between my
organization and the neighborhood ASO is crucial in that it may be the only way to reach
some individuals with lite saving treatment education.

Needle Exchange. It is clear to me that well designed needle exchange programs will
lower the incidence of HIV among IV drug users and individuals who have sexual contact
with them, It is also clear to me that such programs would not increase the use of IV
drugs but would probably increase the number of individuals seeking substance abuse
treatment. But, this is nol a subject people like to talk about. It is not a pretty subject.
But, as a person who contracted HIV because | shared needles for IV drug abuse, | can tell
you in no uncertain terms that the availability of clean needles to me would have
probably prevented me from contracting HIV.

There are many needle exchange programs in a number of cities throughout the USA
supported by state or local funding. They have been documented to show that decreases in
transmission of HIV occur when a well designed program is implemented. Congress
commissioned its own committee to research this question and this committee retumed a
document saying that needle exchange prpgrams can decrease HIV transmission. This
document has been presented to Secretary Shalala and to Congress. It is way past the time
where we should have Federal support for needle exchange programs. Support should
consist not just for funding but also with assistance in designing and implementing
programs in collaboration with local government and private entities.

in summary, there are several points | want to make:

+ With the availability of successful treatments for HIV, too many doctors and patients
are not well educated enough on how to use them. Support from the Federal
government can help improve treatment education

+ ADAP needs adequate support. No person with HIV should be denied access to adequate
treatment

‘+ Small neighborhood based organizations providing basic services are crucial to
minority communities. it is the main source of services for many individuals living
in those high incidence neighborhoods. Continued and additional support is needed
from the Federal government

Needle exchange programs can decrease HIV incidence. They do NOT encourage IV drug
use. Needle exchange needs Federal support


35

Mr. Cruz. Good morning, Mr. Chairman.

Mr. SHays. Good morning.

Mr. Cruz. I’m pleased for the opportunity to present testimony
on behalf—

Mr. SHays. Excuse me, if you could turn on the microphone,
maybe. Is it long enough to put on the other side of you? Actually,
there we go.

Mr. Cruz. Can you hear me now?

Mr. SHays. We can hear you fine.
not Cruz. Thank you. Very rarely I’m told that I cannot be

As requested in your invitation, I will discuss coordination be-
tween the State and New York City as well as current State initia-
tives related to the care and treatment of persons with HIV. I will
provide a brief summary, 5 minutes, of our activities in these
areas. More complete information is available in my written testi-
mony.

The primary goal of the New York State Department of Health
is to insure that each dollar from all sources; State CDC, New York
City, et cetera, are used in a complementary fashion to provide a
full continuum of all services in New York State. There is a close
coordination and cooperation with New York City with regards to
the allocation of funds for HIV services.

For example, AIDS Institute representatives serve on the New
York City Ryan White Planning Council and participate in the de-
cisionmaking process and in the allocation of New York City title
I funds. In addition, the State and New York City have formed a
unique partnership in that we jointly support initiatives through
which wide range of HIV services are provided in New York City.

For example, the AIDS Institute administers service pro;
for the uninsured and underinsured and the city has allocated sub-
stantial title I resources to support these State-administered serv-
ices for New York City residents. These programs include the
ADAP program and ADAP Plus program, which Dr. Gil just re-
cently discussed.

In recognition of the need to establish systems to educate pa-
tients and providers about the new therapies, Ryan White title I
funds for New York City have been combined with the State’s Ryan
White title II funds to support treatment education programs for
consumers and staff of community-based organizations. The State
and New York City also joined to support care and service pro-
grams for HIV infected persons in New York City. These programs
provide primary care services and services targeted to substance
users as well as women children and adolescents. Further, there is
close coordination between the city on the recent development of
the Ryan White statewide coordinated statement of need.

Quality of care studies conducted by the AIDS Institute are co-
ordinated with New York City. In regards to the State initiatives,
as I say, I will briefly discuss the State initiative related to the
care and treatment of patients with HIV. I have already described
the State’s HIV care program for the uninsured.

As Dr. Gil stated, the largest source of payment for HIV care in
the city is the Medicaid program. The State Health Department
has implemented programs through which enhanced Medicaid


67

Mr. SHays. Let me just tell you, your entire statement is put in
the record. Our staff goes over all the statements with a fine tooth
comb in preparation for the legislation and recommendations we
developed, so be assured that it is not just stuck in the record.
Your testimony as you gave it was quite helpful, so I thank you
very much.

Mr. LEvIN. I hope so. Thank you.

Mr. Sways. Thank you. Adaline DeMarrais. Am I saying your
name right?

Ms. DEMarRaIs. Adaline. Thank you.

Congressman Shays, Congressman Towns, thank you very much
for this opportunity to share with you some concerns I have about
current and future psychosocial medical response to people infected
and affected by HIV disease.

As a founder and director of Evergreen Network, which is a so-
cial service agency in Bridgeport, CT, that primarily serves eco-
nomically marginalized families and individuals touched by HIV/
AIDS in southern Connecticut, I work with over 150 infected adults
and children and 200 affected children and their families and ’'m
proud today to be the first speaker today to speak about children.

Children are a critical issue in this’ disease. In 1985, I was
among the first in the United States to realize that large numbers
of children were being orphaned by this disease and were not being
recognized or provided for by social service programs at any level.
For the past 12 years, I have worked with children and families as
their nts died from this disease. Today because of the new
drug therapies we are starting to see longevity for these people:
However, stemming from my years of experience in this field, I
have many significant concerns about gaps in service, continued ac-
cess to treatment, lack of coordination of care among community,
city and Federal providers.

The issues that I have identified are; the affected children in
these families must have a system of temporary guardianship and
mental health services for them available for them and social serv-
ice provision must not stop with the death of a parent. Even with
improved prognosis, their parents will still require occasional hos-
pitalization and/or bed rest because of their fragile health systems.
The children in affected families need to be assured of continuous
uninterrupted care and supervision during these times of acute pa-
rental illness or death.

In addition, I have recently seen that the stress and trauma of
their parents illness and possible death necessitates a need for
mental health services to these children. And these mental health
services need to be available for extended periods of time and for
multiple periods of treatment. We know this clinically; children
grieve and resolve trauma developmentally. That means that what
is resolved at age 6 needs to be redealt with again at least in mid-
dle school and again in high school at the very least. The numbers
of these children are significant. Here in New York City, the New
York Times reported over 30,000 children and those numbers are
extrapolated to Connecticut, because we have this close affinit;
with New York. We share many wonderful things with New Yor!
but also the tremendous increase in this disease.


104

Gwen Carter Testimony
HIV Prevention Alliance of New York City
Page 9

HPA: Longterm Strategies for Promoting Public Health in Vulnerable Communities
We believe that the model that is being developed and tested for Black
communities by HPA may be replicable for other racial and ethnic communities and
for other jurisdictions throughout the United States. With a strong commitment to

evaluating the project, specific measures will be designed and reported against.
Over the next few years, we will be in the position to propose strategies for
building organizational and community capacity for delivering a wide range of HIV
prevention and care related services for other vulnerable communities.

Yet this project has many additional potential benefits. With the
collaboration of twelve major agencies that serve a population that increasingly
shows significant concentration of HIV disease, a greater capacity to engage in
strategic coordinated deployment of services will emerge. Until now, the resources
necessary to collect and analyze data on neighborhood level needs, existing service
delivery systems and potential synergistic relationships among agencies serving
Black communities, has not existed.

The project model also offers opportunities to advance the health status of
populations at risk for a variety of preventable disease and conditions by offering
avenues to reach individuals who are not accessing traditional health care delivery
systems of public health services. Individuals being served by HPA agencies are at

tisk for various vaccine preventable diseases, tuberculosis, asthma, diabetes,


126

mostly Caucasian. The folks that are not only affected by it, most
times are dealing with folks that don’t understand their culture,
don’t understand their economic situation, don’t understand their
housing conditions. And so they're miles apart from what we have
to deal with. There is no coordinated, serious coordinating effort be-
tween the city, State and Federal agencies dealing with these agen-
cles.

You had a number of rts. I've listened to it, good Congress-
men, this morning here. of these good folks testifying about
what they’ve been doing. The agencies as a whole have not really
responded to the needs of the community. And then let me just do
this very quickly. What’s happening in Brooklyn is happening not
only here, it’s happening all over America in the inner cities, where
they take one organization and pit it up against another and when
you look around in, we're ting each other. And this is lead-
ing to the demise. This is part of the problem.

it do we do? You've heard my protest. What do we do? I’ve
listened to some of these folks sitting here. I'm thankful to God
that at the last juncture you said let lic speak. What some
of these folks need to do is go to the back of the room when this
meeting is over and say “let’s stop playing | games with each other,
let’s sit down and figure out how we can it together. Let’s call
on some of our so-called celebrities,” and I'm talking about black
stars, “the basketball stars, the entertainers and give some benefits
like they do for them other organizations and raise some money.
Let’s go to Washington and set up a meeting with Congressman
Towns and Congressman Shays and talk to the CDC,” which does
not make site visits like they ought to. They don’t know what's
going on.

Now, I’ve done it. I am the national chapter for the 369 Veterans
Association. I'm also the past chairman for Harlem Hospital’s Com-
munity Board, so I know from whence I speak and very quickly ——

Mr. Suays. Let me just say, my mother told me never to inter-
rupt a preacher, and es ‘ially a veteran, but we do need to move

ng.

101

Mr. Roya.. I’m ready to bow out, but I just want to say this for
the benefit of Assemblyman Griffith. Somebody hit it right. Many
of these hospitals because of the rotation system, Congressman
Towns, you've seen it in our own hospital, you got a lot of doctors
there, residents, interns, rather, who have not come prepared, who
not only don’t speak your language, but 9 out of 10 times are not
working under attending supervision, attending physician super-
vision, 60 the end result. is | he ‘t when you go into the emergency
room for triage, 9 out of imes you're going to end up getting
what is known in common vernacular as the shaft. And that’s why
we have the problem.

I thank you both for the hearing today and I pray God that soon-
er or later that you'll take this hearing all over this city, because
it’s not only needed in Brooklyn. Everywhere.

Mr. Suays. Thank you very much.

Ms. MCFARLANE. Hi, By name is Rosa McFarlane. I am an in-
take counselor for Black Veterans for Social Justice and HOPA pro-
gram, Housing Opportunity for People with AIDS. We just recently
lost our funding, and, I’m going to try not to cry like a baby, but


45

who will do that. That’s something that needs to be done both in
the public setting and also the private.

Mr. SHays. So in counseling and advising, it’s not necessarily in
law and they haven’t broken a law if they don’t notify a partner?

Mr. HANSELL. That’s correct.

Mr. Suays. I think the response to my question, I gather, would
be you would use that same model, just greater encouragement but
not necessarily punitive?

Mr. HaNSELL. And make more of an effort to incorporate it more
into the standard of care in the medical community.

Mr. Suays. Mr. Cruz.

Mr. Cruz. Just as a final comment, this is a job at the co! S-
sional level. We need to maintain at the city and the State level
an opportunity for more, we’re concerned more and more at the
Federal level they’re telling us how to do things and they’re trying
to establish a system that may work for the system, but may not
work for New York City and New York State, so we ask for your
cooperation in maintaining the flexibility of the decisionmaking au-
thority on that level.

Mr. Suays. One of the things I tell my fellow Republicans, we
talk about local government control and State control and then we
proceed to want to tell you what to do.

Any last short comment that any of you might like to make be-
fore we get to the next panel?

Dr. CHIN-Loy. One short comment, Mr. Chairman. In Dr. Gil’s
testimony it’s outlined in terms of people of color under the law,
PRUCOL, which is called voluntary departure. Those are people
who are legal immigrants or granted special status, as of Septem-
ber 1998, those individuals will lose all Benefits in the State of New
York and nationwide. It’s an urgent issue and they will lose all
Medicaid entitlement and we approximate that in New York City
alone there are about 1,500 of those individuals. It’s important this
issue be addressed as soon as possible.

Mr. SHAys. Thank you. I know for the record that we had three
recommendations and that was one of them. That was one of the
recommendations that addressed the particular issue of health care
provided for those who are here legally, but essentially denied serv-
ices.

Something that we tried to support are those who have spon-
sored individuals in this country and in a sense assumed providing
for their needs. We want to be sure they've lived up to their obliga-
tions as sponsors as the law requires. But I think the point is well
taken and we need to address it in Congress. Let me do this, we
need to get to the next panel.

Mr. Towns. I really appreciate you coming and sharing your
thoughts with us, it’s just so important. This is a very difficult situ-
ation and we need as much information to move forward as quickly
as possible. Thank you.

Mr. SHays. We're going to go to the next panel. I will call the
names and I will probably do great harm to some of these names.
I wrote them down; Jairo Pedraza, HIV Health & Human Services
Planning Council of New York City; Antonne Moore is coordinator
of East New York/Brownsville HIV Care Network; Jules Levin, ex-
ecutive director of National HIV Advocacy Project; Adaline


87

Cameron Craig

St. George Project

c/o Interfaith Medical Hospital
555 Prospect Place

Brooklyn, N.Y. 11238

running for president, and he said “Each one , teach one.”
Mrs. Clinton has spoken a great deal about how it takes a
village to raise a child. Both sentiments hold true with
regards to HIV treatment and prevention.

| am someone living with HIV, and it is my responsibility
to tell others both about how they can live long lives with
HIN infection, and how they can avoid getting it in the first
place. | would not have been able to help others if | did not
get the support that | did through a counseling program. |
firmly believe that my outreach to the HIV community has
extended and saved lives. | also believe that many of the
young people that | have spoken to will think twice before
engaging in high risk sexual behavior.

When | talk to teens about AIDS prevention, | talk
mostly about ways to have safer sex. As someone who
sees everyday the front lines of the epidemic, | can tell you
in my opinion, that | see AIDS being transmitted primarily
through unsafe sex, and not through dirty needles or blood
transfusions. | want to add that the needle exchange

3


8

permitted to include their written statements in the record. So or-
red.

Let me just explain to you. It will be Breen for 5 minutes, be on
red for just a few seconds, and then we'll give you another round.
I would like your testimony to be somewhat complete between 5
and 10 minutes, if possible, and that’s our intention. We will hear

from Dr. Gil, and you can open the hearing.

STATEMENTS OF ROSA GIL, SPECIAL ADVISOR TO THE MAYOR
ON HEALTH POLICY, NEW YORK, NY; AND HUMBERTO CRUZ,
DIRECTOR, DIVISION OF HIV HEALTH CARE, NEW YORK
STATE DEPARTMENT OF HEALTH

Dr. GIL. Good morning, Congressman Shays, chairman of this
subcommittee, the Honorable Congresswoman Velazquez and Con-
gressman Towns. Thank you for the opportunity to address this
subcommittee on important developments relating to new HIV
therapies and the im that they are having on infected in-
dividuals in New York City.

Mr. Suays. I’m hearing my voice quite strongly. Would you just
tap that mic? I want to know if that mic is activated. Yes, fine,
thank you.

Dr. GIL. My name is Dr. Rosa Gil, I’m the special adviser to the
mayor on Health Policy for New York City, and director of mayor’s
Office of Health Services.

In my testimony this morning, I will provide the subcommittee
with data on the dramatic impact that recent HIV treatment devel-
opments are having on the epidemic in New York City, with a par-
ticular emphasis on the access to those treatments for minority
populations. I will then discuss some of the implications of these
treatments for the evolving nature of the disease and the need for
medical and supportive services and our recommendations for the
steps that the Federal Government could take to enhance access to
treatment for HIV infected residents of New York City.

New York City remains the cpicenter of the AIDS epidemic in
the United States. Approximat yy 16 Percent of U.S. AIDS cases
have been reported from New York City, although it has only 3
percent of the Nation’s population. The city has oldest, est,
and most complex IS epidemic in country. More
100,000 New York City residents have been diagnosed with AIDS
since the beginning of this epidemic in 1981, and more than 65,000
of them have died; 41 percent of New York City residents living
with AIDS are black, 33 percent are Hispanic, 25 percent are
white, 0.76 percent are Asia/Pacific Islander and 0.04 are native
Americans.

The approval of the first protease inhibitor in late 1995 has prov-
en to be a watershed in the history of the HIV epidemic. We now
have four FDA approved protease inhibitors, as well as a range of
other anti-retroviral drugs. The new array of HIV therapies has
dramatically improved our ability to intervene clinically to slow or
in some cases even to reverse the course of the HIV infection.

In November 1997, the Department of Health and Human Serv-
ices released its revised “Guidelines for the Use of Anti-retroviral
Agents in HIV Infected Adults and Adolescents,” which established
a new standard of care incorporating these newly available medica-


AIDS: TOWARD LONG-TERM TREATMENT
OPTIONS

FRIDAY, FEBRUARY 20, 1998

HOUSE OF REPRESENTATIVES,
SUBCOMMITTEE ON HUMAN RESOURCES,
COMMITTEE ON GOVERNMENT REFORM AND OVERSIGHT,
Brooklyn, NY.

The subcommittee met, pursuant to notice, at 9:40 a.m., in the
courtroom of the Borough Hall, Joralemon Street, Brooklyn, NY,
Hon. Christopher Shays (chairman of the subcommittee) presiding.

Present: Representatives Shays and Towns.

Also present: Representatives Nadler and Velazquez.

Staff present: Larry Halloran, staff director and counsel; Marcia
Sayer, professional staff member; Teresa Austin, assistant clerk;
and Cherri Branson, minority counsel.

Mr. Suays. I’d like to call this hearing of the Government Reform
and Oversight Committee, Human Resources Subcommittee to
order.

We are a committee that oversees the Departments of Labor,
Education, Veterans’ Affairs, Housing, Urban Development and
HHS—Health and Human Services. We’re the committee that looks
at programs that Government passes and makes sure the depart-
ments are performing according to the requirements of the law,
makes sure that the laws make sense, and it’s just a distinct pleas-
ure for our committee to be here, and to participate in this very
important hearing, looking at AIDS, the long-term treatment op-
tions.

I'm joined by, the official title is the ranking member of the sub-
committee, but really he functions as co-chairman. It’s not a par-
tisan subcommittee in part, because of the ranking member I have.
We work together as a team, and this is the second time we’ve
been here, on basically the same issue. So I would just say it’s
great to welcome our witnesses, it’s great to welcome our guests
and to have two extraordinarily effective Members of Congress who
have joined us, Jerrold Nadler and Nydia Velazquez, both very ac-
tive and I think powerful Members of Congress because of their in-
tellect and their work ethic.

At this time, I will make a statement and I will call on the other
Members of the panel to make a statement and then we will be
joined with opening words of tings by the deputy borough
president of the Borough of Brooklyn, Jeannette Gadson.

Let me just make my very short statement. The Subcommittee
on Human Resources meets in Brooklyn this morning at the re-
quest of our ranking member, Mr. Towns. His long standing con-

160)


42

First off, I spent a long time here, and one controversial area
would be needle exchange, another is the cost issue and whether
certain people are being shut out. The answer I guess would be yes,
based on cost some aren’t being treated. Another issue would be
that you have to have full blown AIDS in order to get certain treat-
ments unavailable under Medicaid when you’re only HIV.

Give me a list of some other controversial issues and then I want
you to deal with the last question. I just want to know what those
are. I want to make sure I see the universe. You don’t have to an-
swer them, just tell me what they are.

Dr. Git. If I may, I think the Commissioner, I think Commis-
sioner Hansell and Mr. Cruz underscored the fact that this epi-
demic in New York City are characterized by individuals who have
different co-morbidities, and by co-morbidities I mean other ill-
nesses other than HIV/AIDS, for example, substance abuse, STD,
mental illness. Those individuals who suffer from different co-mor-
bidity makes the participation more complex.

It is not, many times there is an assumption here that the indi-
vidual does not want to take or cannot keep up with the medical
regime or the compliance. These are individuals that lead very,
very complex lives. My colleagues here highlighted the issue of
homelessness. If we don’t have a roof over our head, I think it’s dif-
ficult to think about when to take the medication, if you don’t have
a roof over your head. If you are a patient who suffers from TB,
you are also taking medications. I don’t think it’s a question of ei-
ther-or, because this discussion, which I agree with you, that is
controversial, in a way the victims have been blamed, quote, for not
being responsible for taking the medication and I think there is an-
other story to this, which is the complexity of the lives does require
case management and it does require an array of services just to
help these individuals to comply with medical treatment.

I think that often to make positions on behalf of patients, at least
in my practice of medical care, we’re professionals, make decisions
for patients without really taking into account the circumstances of
their lives. So I think that this is quite a complex environment
where these patients live, and indeed the community-based organi-
zations are trying to do the best that they can, but I am giving in
the President’s submission to Congress, when he asked for a 35
percent increase——

Mr. Suays. I'm Boing to be a little more disciplined here. I want
to cover some points. You’re making some very valid points, but I
want to stick with the three controversial issues; needle exchange,
who gets treatment based on cost and should someone be denied
treatment if they're not going to follow the treatment according to
the protocol because of the possibility of developing a stronger
strain and passing it on to someone else. That is controversial.
Now, what would be some other controversial issues? I just want
to see—

Mr. Cruz. You mentioned three, I have six.

Mr. Says. Good. What are they?

Mr. Cruz. I think, I don’t call them controversial. Those are the
reality of what we're facing and the reality is new treatment and
then access to new treatment. Funding for those new treat-
ments——


3

A Bistory of Firsts .

Sunnort Groups for Children and Grandparents and Women

‘The Evergreen Network, Inc. was the first agency in the country to identify the trauma for affected
children and form a support group for these children, “The Sunshine Kids ” In addraon, Evergreen
‘was the first agency in Connecticut to recognise the stress for grandparents raising grandchildren

‘orphaned by this chsease. Por these older family members, anouery over their declining health and

the pein experienced from the leas of their own daughter or son 18 coupled with the stress of canng
for an orphaned grandchild,

Evergreen was alto one of the first agencies to recognize the uriqua needs of HIV+ women and
‘tart the first support group in Connecticut where these women could address such issues as how to
tall their children they are HIV+ and how to plan for the furure gvardianship of their children

‘The Bvergreen Network was one of the first agencies in the U.S to recognize that farrulies and
‘partners continue to need assirance after the desth of the unfeczed person Although most agencies
end service provision with the client's death, it is dinically recogpuzed that people experience
normal grief reaction for up to seven years following the death, and children re-gneve therr loss
through each developroertal stage. Also, many families are econorucally marginalized, and now
with the loss of a primary caretaker they face even more severe burdens. It is critical after the
death of ane or both caretakers to encourage the preservation of the famuly unit and therefore,
Evergreen continues to provide the extra assistance that thece families need This psychological,
legal and financial support aften prevents the orphaned children from being placed in the foster
care system. Currently Evergreen is the only agency in Greater Bridgeport Area that conunues to
work with the family members after the death of the infected person.

Am Advocacy Role

‘The Evergreen Network has been and continues to be in the foref-ont of both idertifying and
implementing program strategies to respond to this panderrac both locally and statewsde These
past 5 years we have been bualding s foundation based on the appropnate response to the reeds as
defined by the clients and the therapists. We have continually advocated for the nghts of persons
‘beth infected and affected. In that capacity, The Evergreen Nerwork was the iead agency in
requesting a legal precedent from the Probate Administrative Court regarding temporary
guardianship of children whote parents have a medical cris (eg, hospitalization). As of Ocobe:
1, 1994, the State Legislarure passed Public Act 94-207 that permits a parent to designate a
mandby guardian of a minor. In addition, Evergreen was instrumental in the pursuance of a
‘Mental Health subcommittee on the State-wide Consoruum. Evergrem initiated the dialogue and
after extensive meenng with State agency directors, this working group has become reality

Additionally, The Evergreen Network initiated the development of a sub-committee on
children/adolescents in the local consortium to address the speatfic needs of ts population.
Recognizing that Evergreen cannot presently respand to the needs of the nearly 1,000 children
affected by HIV Disease/ALDS in this catchment area, Evergreen has drawn other chi:deresponsive
agencies into this sub-commuttee in en atternpt to expand the serstoes available to this populaton


82

Most young people want to be adults, so they will not abstain from sex. Safe sex
information does not make me, or my friends, go out and want to have more sex.
It simply teaches us to be safe. We are not looking to be sexually active to the
point of having sex with everyone in the world. We just want to know that we can
be safe if we do have sex. I think all youth want to control their own lives. Safer
sex fits into that need for control quite naturally. For youth, sex is the most

powerful thing that they can control.

The federal government needs to have funds geared specially towards youth
and HIV/AIDS education. A national knowledge of AIDS and HIV education is a
must for youth. It is our turn to be educated. No one really likes to talk about sex,
whether you are a youth or an adult. I think that if there are enough people who
got together who actually want to talk about it, maybe more people would get
involved. We should not just look at the science to find a cure; we have the power
to control the disease if we practice safer sex. Prevention is the only vaccine that

we currently have for HIV.

There is no research on the possibility of HIV transmission in lesbian sex.


AIDS: TOWARD LONG-TERM TREATMENT OPTIONS

HEARING

BEFORE THE

SUBCOMMITTEE ON HUMAN RESOURCES

OF THE

COMMITTEE ON GOVERNMENT
REFORM AND OVERSIGHT
HOUSE OF REPRESENTATIVES

ONE HUNDRED FIFTH CONGRESS
SECOND SESSION

FEBRUARY 20, 1998.

Serial No. 105-128

Printed for the use of the Committee on Government Reform and Oversight

a

U.S. GOVERNMENT PRINTING OFFICE
49-283 CC WASHINGTON : 1998

For sale by the U.S. Government Printing Office
Superintendent of Documents, Congressional Sales Office, Washington, DC 20402

ISBN 0-16-057195-2
3



108

Mr. LEvIN. Well, the point I'd like to make is that I think there’s
a mischaracterization of all the accomplishments that the new
therapies have, that has occurred as a result of that. Because I
think the drugs weren’t used properly as soon as protease inhibi-
tors were approved in March 1996, there was a tremendous wave
of resistance that developed to the therapies. Doctors were fre-
quently adding on protease inhibitor, onto current nucleotide ther-
apy, and that was not the way to use the drugs. Some of them
didn’t know that at the time.

So as a result, many people became resistant to the therapies
back then and today are struggling with trying to find new thera-
pies that may work for them. Sometimes it’s transient. Most of the
time they have found transient help. I think what’s going to occur
here is if we don’t have adequate treatment education for doctors
and for patients on how to use the drugs properly today, you're
going to have more and more waves of resistance occurring, where
people are going to be failing therapies. We're already failing thera-
pies all over the place and we have not been able to find followup
therapies yet.

I think there’s a hope in the near future that the new therapies,
some protease inhibitors that may work against a resistant virus
and some other types of drugs that may not be cross resistant with
protease and we're hopeful of that, but I think you will find that
resistance will develop to the therapies in increasing amounts over
the next several years and I think that’s going to cause a big prob-
lem.

Dr. DuRAND. I think not only has AIDS education funding been
reduced, but also because of overmedia use of new treatment and
in terms of ethnicity, a lot of people are also under the impression
that it doesn’t matter, you don’t need to prevent it anymore, be-
cause if you’re infected, you can live with it. So in young people
and in a lot of people that we’re dealing with at the new Task
Force on Prevention, there’s less anxiety, there is less worry, be-
cause, I think the media kind of paralyzed the new treatment and
therefore people are comfortable with the idea of being infected and
being able to live with it, the same reason why certain notification,
and new behavior, you can live with the medication.

So what we’re seeing and what I think should be emphasized is
not only education in terms of treatment education, which is a very
focused and time limited intervention, but a more multidisciplinary
approach, because we're also talking about renotification, when
we're talking about renotification, we're talking about a long-term
process and we're talking about the involvement of the support sys-
tem of the family of the person involved, so it requires actually I
think a procedure approach to education, including treatment edu-
cation, but not focusing only on treatment education.

Mr. CraiG. Yes, I see this increase in myself. I agree with her
with the fact that the media in a way has downplayed the effects
of the virus, especially with people becoming undetectable. A lot of
my peers and a lot of 13 seem to feel that if you say that you're
undetectable then you have no more virus in your blood, that’s not
true. You still carry the virus, it’s just not replicating, and they are
under the impression that they could still have unprotected sex


131

TESTIMONY
Presented to the Subcommittee on Human Resources
of the Committee on Government Reform and Oversight
“AIDS: Toward Long-Term Treatment Options”
Friday, February 20, 1998
Borough Hall
Brooklyn, NY

It is with deep appreciation that | thank both Congressman Shays and Congressman:
Towns for scheduling hearings on an issue which has affected Brooklyn residents in such
@ profound way, and for conducting these hearings in Brooklyn. Brooklyn may now have.
the dubious distinction of having the largest population of people living with HIV/AIDS in
the United States—and by every indication this epidemic is still growing in communities of
color throughout the Borough.

Appropriate Medical Care including Long Term Treatment Options
Must Be Made Accessible to Every Person Living with HIV/AIDS

As the supervisor of HIV/AIDS legal services for Brooklyn Legal Services
Corporation A for the past six years, | have witnessed the rapid increase in HIV
transmission among the most fragile members of our society — women of childbearing age
living in poverty, children, adolescents, and individuals already sick with tuberculosis,
substance abuse, or mental illness. Fear of discrimination, stigma and shame still
accompany transmission causing the newly infected to take desperate measures to hid
their illness. While the epidemic has been increasing in Brooklyn's low-income
communities of color, access to medical care and new treatments, food and nutrition
programs, substance abuse services, income support, and supportive services is
becoming more difficult.

This growing lack of access to appropriate, adequate and competent medical care,
treatment and treatment options as well as subsidies for food and nutritional services,
transportation, and nonhazardous housing/shelter is the focus of my testimony today.
Without access to these life-sustaining subsidies and health-related services people living
with HIV will continue to develop debilitating HIV illness and AIDS, rendering “long-term




109

and they're not going to get infected, because I’m undetectable, I
can’t ass it to you.

And I also think you’re going to be seeing an increase in the Car-
ibbean section of Brooklyn in particular because of, just because of
the culture. When I try to do peer education and outreach there,
that community is not as open as, I would say as the African-Amer-
ican community is. They're not open to speak about sex education
in particular, about wearing condoms in particular, about just sex
in general.

Ms. CarTER. I think that the number of AIDS cases will defi-
nitely increase, just because in our work we find that there are a
lot of ple who don’t have the courage yet to get tested. So there
are a lot more HIV positive people who are not counted within the
numbers and as they get the courage and the education to get test-
ed, the numbers are logically then going to go up.

We come into contact with people who have found out recently
that they were positive, and know that they were positive for like
13 ors and they just found out. So as these people get educated
and go to get tested, you’re going to see the numbers go up, and
if we don’t get enough money to do the kinds of work that all of
these agencies at this table do and the people who are here in-
volved in to provide prevention education to people, that’s the key,
that’s the key to making the numbers go down.

Mr. Towns. Thank you very, very much, and let me just sort of
say that I would like to ask you to give me your views for the
record, not now, but if you would be kind enough to give me your
views on needle exchange. Don’t do it today, but if you could just
five it to me, let me put it into the record afterwards, but I would
ike very much, Mr. Chairman, if we could just get that from all
of them in terms of their views.

Mr. Suays. Let me just ask jou this if you would just lift up your
hand if you support needle exchange in this panel here.

Ms. DEMarrals. We were the first program.

Mr. Says. The issue is you all support it.

Mr. Towns. I guess that solves the problem. That’s the consensus
of the group, Mr. Chairman. They've been reading a lot of material.
Thank you very much.

Mr. Suays. Let me use that as a segue into explaining the needle
excl re—you said you were the first?

Ms. DEMararals. I don’t know if we were actually the first State,
but I know we were one of the first States to have it, and we have
found that No. 1, it works in helping to prevent infection, and we
know that it does not increase drug use. It is an effective program,
it’s a program that the governments and the States need to look
at very seriously.

Mr. Suays. Let me use this as an opportunity to tell you that one
of the reasons we invited you was that we wanted to make sure
there was a focus on young children, and let me ask you first your
background, how you got into this issue?

Ms. DEMArRAIS. I’m a psychotherapist or psychologist. In an;
case, I’ve worked with children for 30 years and I worked with chil-
dren’s parents who are incarcerated, their parents 12 years ago
were dying of AIDS, so I started support groups for the children
not knowing, then the children revealed to me, so I started a sup-


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Cameron Craig

St. George Project

c/o Interfaith Medical Hospital
555 Prospect Place

Brooklyn, N.Y. 11238

such groups are located in communities that they are
familiar with, because that familiarity decreases the anxiety
about getting counseling. As a Brooklynite, | feel that !
should not be required to go to Manhattan to get services.
There are some of us who are not well enough to go to
Manhattan, and others who really don't know Manhattan -
geographically or culturally - that weil. | recommend to you
as Congress members that the Federal government should
legislate that there be equitable distribution of block grants,
based on the geographic distribution of AIDS cases within
the area receiving the block grant.

One of the reasons | have benefited from the St.
George project is that it is in close proximity to be my home.
The St. George project is a community based organization,
based in Interfaith Hospital, in the Bedford-Stuyvesant/
Crown Heights area of Brooklyn. This program was set up
to educate and empower consumers who are HIV positive.
The programs within the St. George project include the
political action group, community action counsel, focus
group, drug and relapse prevention group, and HIV positive

5


84

Mr. SHays. Thank you very much. Mr. Craig. Dr. Durand. I'm
sorry, we will be having his comments after, thank you.

Mr. Craig, I think we’re going to have to get that mic closer. I
know it’s inconvenient, because it doesn’t have a long stem.

Mr. CralG. Congressman Shays, Congressman Towns, my name
is Cameron Craig. I’m HIV positive, I was diagnosed in 1996. Like
I said, I'd like to express my deepest sorrow and my sincere wishes
to the family and friends of three of my members in the Interfaith
Hospital who just recently passed away due to the AIDS virus.

My therapist suggested that I go to St. George in order to partici-
pate in counseling services, and with the help of the group counsel-
ing services that I participated in, I am now able to educate my
peers in my community about the dangers of high risk sex behavior
in the Borough of Brooklyn. As Dr. Levin said, Brooklyn to me
seems to be still considered the second class borough when it comes
to services that are needed in this city. In my peer education talks
that I do around this borough and in the prisons, I find that igno-
rance and denial are still rampant in Brooklyn. We're providing our
young adults and teenage population; there are many who consider
AIDS as I’m not going to get it, 1 can’t get it, as long as she’s a
virgin, she can’t give it to me or I can’t give it to her.

I find that in participating in group counseling services, members
of the group counseling groups are empowered to speak to one an-
other, they find out what each other is going through, they find out
that they’re not alone, they make better choices in medication and
in asking questions of doctors as far as what the medications are.
It seems to me that it’s just that there’s not enough done as far
as supportive counseling is concerned.

It is very apparent that when you have someone else to talk to
that has been in your position as far as being affected and infected
by the virus, you make better choices. You find that you’re not
alone, you're not isolated. You don’t have, you don’t go through pe-
riods of thinking about suicide, thinking about going back to drug
use. Having the virus, you find that there are other things that can
lead to you not adhering to your drug regimen as far as stress, so-
cial discrimination, alienation from family and friends, and just
being scared to talk to people because you're infected with the
virus.

Once you join these programs, you find that you enjoy life a lot
better, you find that you're able to deal with the fact that there are
other people out there like you, who are infected who are living
longer lives, happier lives, and if you’re into drug abuse, cleaner
lives, because now you know you're doing drugs, doing drugs will
not allow you to live a longer life, because they're interacting with
the drugs you're taking to make you live longer.

In conclusion, to me, there are ways Congress could legislate
funds to support new counseling services in Brooklyn especially, so
that as Mr. Levin said, I shouldn't be required to go all the way
in Manhattan to find a service since I live here in Brooklyn, since
Brooklyn has the highest population in the city, of New York City.

So thank you very much.

[The prepared statement of Mr. Craig follows:]


12

enabled us to increase our services, but we would like to rec-
ommend in fiscal year 1999 the present proposal for increase in
funding for the ADAP program. This is extremely important, be-
cause ADAP allows us to provide medication to the uninsured indi-
viduals, but we have to say that we’d like to see an increase in title
I funding, which just reflects perhaps a 5 percent increase in the
President’s budget.

Second, the medication. The administration has had under dis-
cussion the possibility of allowing States to apply for a Medicaid
waiver to establish Medicaid eligibility based on the diagnosis of
HIV/AIDS infection rather than full blown AIDS, and a somewhat
higher income than for general Medicaid. We encourage Congress
to look at this recommendation.

Last, we are very concerned about the impact of changes made
in the welfare and immigration law enacted by Congress in 1995
and 1996 with res; to immigrants. Approximately 9 percent of
New York City AIDS cases are among foreign born residents pre-
dominantly from the Caribbean and South America. Under recently
enacted cl es, Most new immigrants must wait until they have
resided la’ ly in the United States for 5 years before becomin,
eligible for most federally funded programs. We have recommend
that Congress look at the category of PRUAL, persons residing
under authority of law, which has an impact for people who are liv-
ing with HIV and AIDS. .

in conclusion, we would like to thank the Congress Members and
chairman of this committee for allowing us to present this testi-
mony. Thank you very much.

Mr. SHays. Thank you very much. It was very important testi-
mony. I thank you.

{The prepared statement of Dr. Gil follows:]


Page 4
Brooklyn Testimony
2/20/98
There are only two needle exchange programs available in all of Brooklyn
Nevertheless, these have experienced great success with engaging injection drug
users into services. They have the unique ability to increase knowledge and access to
service because they become a form of liaison between the injection drug user and the
service provider. Often they will attend appointments with the individual to provide
better transition. This is what early intervention is all about. Lifting the federal ban on
needle exchange would provide communities such as Brooklyn with the resources to
expand this preventive, effective, and innovative work.

The issue of Needle Exchange is not a simple one. Nevertheless, it is an issue of
public health and science. Studies conducted throughout the Nation, by the U.S
General Accounting Office, Center for Disease Control and Prevention and the National
Research Council and Institute of Medicine, have shown that these programs help in
the prevention of HIV and other blood-borne diseases. According to a poll conducted
by the Kaiser Family Foundation 61% of Americans favor allowing state and local
governments to use federal funds for needle exchange programs. In a study in
Connecticut, the rate of needle sharing was reduced from 71% to 15% in three years
without increasing drug use. In a study conducted by the City, syringe exchange/harm
reduction programs could reduce 5,000 new HIV infections by the year 2,000. Needie
Exchange Programs work, they save lives and increase access to treatments and

services.

Access to services for people of color and difficult to reach populations is critical. In
truth I, like most of us here today, am appalled by the way in which drugs and the
violence which can result has impacted individuals, families and our society as a whole.
| am disheartened every time | feel like my voice and the voice of people living with and
affected by HIV/AIDS are not heard when we request assistance in stemming the
epidemic by increasing necessary resources.


Gwen Carter Testimony
HIV Prevention Alliance of New York City
Page 1

Good morning, Mr. Chairman. Thank you for the opportunity to testify
before the subcommittee. It is heartening that you have recognized the importance
of coming to Brooklyn to hear from some of us who are on the front line in the fight
against HIV in the city that has the dubious distinction of being the epicenter of the
AIDS epidemic.

1am Gwen Carter, Executive Director of Life Force: Women Fighting AIDS, a
community-based organizations located in Brooklyn and serving residents
throughout the borough. The primary populations that Life Force targets are HIV

infected and affected women and their families. Life Force was one of the first

organizations in the country to train and employ HIV positive women as peer
outreach workers and educators. Most of Life Force’s women peer educators are
Black and Latina, and they live and work in the Brooklyn communities where they
battle to protect other women like them from becoming infected with HIV.

Although peer-delivered prevention services, linked to concrete supportive
services, are at the foundation of Life Force’s model of service delivery, we know
that fostering long-term behavior change in at-risk populations requires more that
just the provision of information alone. Indeed, an effective prevention strategy
across all at risk populations, including women, substance users and men who have
sex with men, requires that a continuum of prevention services be available.

Effective HIV prevention strategies will include HIV counseling and testing, and


15

I think that some young people are naive to the fact of the AIDS
epidemic. They know that the disease is there, but there is a lack
of specific information about sex and AIDS. They either don’t know
about safe sex or don’t know how to go about learning about it. We
need more AIDS education geared toward youth to show them the
consequences of not practicing safer sex.

Many young people think that AIDS is over because it’s not in
the media anymore. You can blame whoever you want to, but if you
want to live a long, healthy life you yourself have to go out and
seek this information. This is why AIDS outreach to youth is more
important now. Most of the young women that come though
BBLYS are in school and get some information about AIDS there,
mainly about how to practice safe sex and about AIDS. The young
women who come to BBLYS still seem to be lacking assurance
about AIDS. I think the participants feel that the information they
get from us is good because we're part of a youth organization and
they seem to know that what we're telling them is fact and in gen-
eral there are a lot of youth who don’t trust information from
adults, so they don’t trust AIDS information from adults. They
trust information from us because it’s coming from professional
people and some of the young people there are involved on a volun-
teer levels which makes them feel more comfortable.

Young people not having sex is out of the question for them. This
leads us to only one thing, showing young people how to practice
safer sex. The Federal Government’s attitude toward safer sex
leaves young people with a lack of funds, programs and opportuni-
ties for safer sex education. Safe sex education does not make me
or anyone else want to have more sex. It simply teaches us to be
safe. We’re not looking to be sexually active to the point of having
sex with everybody. We just want to know that we could be safe
if we do have sex.

The Federal Government needs to have funds geared specifically
toward youth and HIV/AIDS education. A national knowledge of
AIDS and HIV education is a must for youth especially. We should
not just look at science to find a cure. We also have the power to
slow the spread even further if we practice safer sex.

I don’t think there’s research on the possibility of HIV trans-
mission in lesbian sex, but I cannot say anything definite because
no one has told us any definite answers. There should be Federal
AIDS research specifically on the transmission of HIV between
women. This research would benefit everyone who has sex. Once
we know if it’s possible to get HIV from another woman, that infor-
mation affects all lesbians, all bisexual women and all women and
men who have sex with each other. It also would give everyone who
wants to practice safer sex more information and more choices on
how to do so.

In conclusion, I would ask Congress how can the youth of today
be the adults of tomorrow if we’re not being told what HIV and
AIDS really mean? Ignorance equals death just as well as silence
does. Thank you.

{The prepared statement of Ms. Meyers follows:]


36

rates are available to providers of outpatient HIV services, includ-
ing private Medicare, case management services, acute and chronic
care programs.

As you know, our health care system is moving away from serv-
ice reimbursement to managed care system for the Medicaid popu-
lation. To preserve the continuum of HIV care that New York State
has developed over the past decade, the State Health Department
is in the process of developing HIV special need plans better well
known by SNPs, managed care plans that will be targeted specifi-
cally to meet the needs of Medicaid recipients with HIV.

In addition to Medicaid and uninsured care programs, State ini-
tiatives include it funded programs, grants supported by the
State and Ryan ite funds are directed to health care facilities
and community-based organizations to provide HIV health care and
supportive services.

In conclusion, the coordinated efforts of the State and the city
have resulted in the development of a continuum of services for
persons with HIV in New York City. All of the initiatives I have
described are essential to continue the hopeful trend of declining
alps related death, a trend we are seeing throughout New York

tate.

I must note that this is a time of major changes in HIV treat-
ment and in the environment in which HIV services are delivered.
Changes to the continuum may be required to meet new challenges
that may be posed by new treatments, managed care and welfare
reform. There is a need for increased support for therapies, as well
as a need for services for increasing numbers of persons with HIV.
Support will be needed to meet new challenges posed by the chang-
ing environment and we must note the need for continuing Federal
support, not only for drug assistance programs, but for all the other
Ryan White titles that support a service structure which insures
access to primary care and supportive services. In addition, it is es-
sential to know the importance of continued support for HIV pre-
vention services. New infections occur every day and we do not
have a cure. The headlines may imply that the epidemic is over,
but we all know that it is not. HIV epidemic treatment continues
to be a proponent of the continuing services.

Th you for the opportunity to provide testimony. We look for-
ward to working with you in insuring the provision of high quality
provision of care to New York State residents affected by HIV and

Mr, Suays. Thank you, Mr. Cruz. Thank both of you.

What we'd like to do is ask a few questions on the record. I want
to say up front that I'd love to get into some of the more controver-
sial issues here to help this committee sort out what is controver-
sial and why, but I’m going to start out with Congressman Towns
who can ask the question and then we'll go back and forth.

Tm sorry, let me just say, if we could get that mic back to you,
Dr. Gil and if we could get—is that mic live? It didn’t seem to be.
Yes, OK. So the cord is long enough. Great. Super. Thank you.

Mr. Towns. Mr. Chairman, we're so excited about having you in
Brooklyn, let me just make a special request and sort of deviate
from the normal pattern, recognizing that the statements of all the
witnesses will be put in the record, the entire statement, and to


48

for services becomes a burden. Having one stop services which ad-
dresses our needs would be ideal.

Also, many times going to areas we're not familiar or agencies
that services specific population different than the one that we
come from, could be very, very intimidating. In addition, special at-
tention must be paid to getting underserved populations into treat-
ment and care. Especially, especially substance users, young adults
and women. Understanding their particular needs, such as child
care, drug treatment, counseling.

Once again, I would like to thank you for the opportunity to be
here today. For us, people living with AIDS it’s extremely impor-
tant that our voices as citizens be heard, but most important is
that our needs are met.

I thank you, Mr. Chairman.

Mr. SHays. Thank you very much. Ms. Moore.

Ms. Moore. How is this?

Mr. Suays. Great.

Ms. Moore. OK. Congressman Shays, Congressman Towns, I
would like to thank you for the opportunity to discuss some key
issues related to access on HIV and AIDS treatment services in
Brooklyn. There’s an African proverb which goes, “The lion’s story
will never be told if the hunter is telling the tale.” I am pleased
to see some diversity in this panel so that people’s stories can be
heard today.

To give you some background, as coordinator of the East New
York/Brownsville HIV CARE Network, a Ryan White title II con-
sortium of over 90 HIV providers, people living with HIV and AIDS
and community members, my purpose is to facilitate the develop-
ment of plans to address service gaps and increase access to serv-
ices in my community. East New York/Brownsville Brooklyn is
identified as having some of the highest needs in the entire city.
Yet despite the clear need, Brooklyn and communities of color con-
tinue to be the most underserved and underfunded areas of New
York City. In fact, an analysis conducted by the 718 AIDS Coalition
show that though the epidemic itself shifted dramatically from
lower Manhattan to the outer boroughs; Brooklyn, Bronx, Staten
Island and Queens, the majority of AIDS funding continues to focus
on Manhattan based agencies. This is in part due to the ways in
which service needs are assessed, but also because they may pro-
vide more appropriate services.

community-based organizations do not have access to the
resources to develop the type of infrastructure which are available
to other larger organizations. To date, despite the availability of
more accurate data, funding agencies continue to use methods of
data collection and analysis which do not present a reliable picture
of the need of Brooklyn. This problem has manifested itself in the
recent Ryan White title I awards. These decisions continue to leave
serious gaps in communities of color which had only been partially
filled by the very same funding. In fact, there remains inadequate
representation from Brooklyn and the outer boroughs on the HIV
Planning Council. Even in MHRA’s own statistics, 17.7 percent
awards were awarded to Brooklyn, whereas 27 percent went to
citywide agencies, most of these based in Manhattan.


117

to try to help them with the psychological challenges that they
ive.

I want to make one comment. I wanted to speak before you and
thank you for coming and I really want to thank Co: ssman.
Towns and our Brooklyn congressional representatives for really
taking an interest. We lost our funding back in November after
provi ling services to, well, currently we had 250 clients, but we

d many more over the years, and if it wasn’t for Congressman
Towns, if it wasn’t for the clients themselves, if it wasn’t for the
various HIV care networks in Brooklyn, we wouldn't be able to sa’
right now that we're going to be funded. We have been refunded,
we don’t know what level, but we have been told we would be re-
funded in HRA.

My concern is that in programs like ours, we assumed we would
be refunded. Our numbers, when I drew them up in the reports,
our percentages, are above our projections by 140 percent. I never
thought we would be at risk for being cut and many other Brooklyn
programs are in the same position and I would just like to find out

there’s some way that programs that are providing services
shouldn’t be in jeopardy, or else we should be told ahead of time
so we can have adequate time to prepare. These last 3 months have
been so devastating to staff, to clients, I think, and we’re so grate-
ful we're going to be around, but I think something needs to be
done to prevent this from happening in the future and that’s my
comment.

Thank you for coming.
pvt SHaAys. Why don’t you stay after the hearing so we can touch

se.

Mr. Towns. Actually, we’re going to SUNY Downstate imme-
diately after the hearing.

Ms. KERSAINT. My name is Gabrielle Kersaint, and I’m director
of the Haitian Women’s Program in Brooklyn. Thank you, Con-
gressmen Towns and Shays.

I'm here to speak about the Haitian community in Brooklyn. My
program provides health management and health education pro-
grams to Haitian refugees and immigrants. We are the program
that was providing case management services to Cubans. We are
working with 120 refugees and children for the last 3 years and we
were also shocked that we were not funded and we had very little
time to refer clients to other services.

We deal with people who cannot speak English, who cannot read
and write, who still suffer from severe trauma, and we developed
some expertise in terms of dealing with immigrant issues. We as-
sist our clients in understanding how to take the new drugs and
now if we have to just discharge clients with no planning, our fund-
ing runs out next Friday, I think the result people are going to be
homeless. A lot of our clients have been cutoff food stamps, they're
haying problems just maintaining basic services.

So I think in terms of future decisions for funding, especially in
Brooklyn, you really have to look at community-based programs
and what they do. We’re a very small program but we provide qual-
ity services. Out of all the, there’s about 500,000 Haitian immi-
grants in Brooklyn, in New York City. In Brooklyn, 71 percent of
the Haitian immigrants live in Brooklyn. Out of all the foreign


Page 3
Brooklyn Testimony
2/20/98

In Brooklyn, the greatest risk factor for HIV infection is injection drug use. However, not
only injection drug users are at-risk under this category, but also their partners and
children. According to the New York City AIDS Surveillance Report, in East New
York/Brownsville, injection drug use represents 61% of reported AIDS cases. As one of
the mandates of the Ryan White legislation, the East New York/Brownsville HIV CARE
Network completed a Service Delivery Plan, which assessed the needs and provided
recommendations on addressing them. This document identified substance users as
‘one of the most difficult populations to engage in services and substance use
interventions as one of the three highest needs.

Engaging individuals into services becomes more complicated by HIV/AIDS, which is
still viewed negatively in communities of color The combined stigma of substance use
and HIV magnifies the individual's reluctance to enter into the service delivery system
This 1s particularly true, when out of necessity the individual enters the system only to
be denigrated, humiliated and ignored. In recent years, early access to new, more
effective treatment has become more important than ever. The fact that the highest
risk population is not accessing services presents major public health concems,
including increased HIV infections, Hepatitis A & B, tuberculosis and other related

illnesses.

There have been several studies indicating that one of the best gateways for injection
drug users to services has been Needle Exchange Programs. Needle Exchange
Programs in New York City conduct more than simple exchanges. They utilize a harm
reduction model which promotes access to drug treatment. provides much needed
referrals, and most important, access to individuals who would not normally enter HIV-
related treatment. Not only are these programs better able to engage this difficuit to
reach population, they are one of the most effective prevention mechanisms for
injection drug users against HIV and other blood-born diseases


138

© Conducting Home and hospital visite
© Advocacy for clicat rights

© Advocacy and legal intervention when clients are being discriminated against because of
HIV status, culnure, color, lack of language

© Assistance with permanency planning, living wills and health care proxy

‘© Clinical crisis imervention and referral to mental health providers

© BSL and literacy education

© Biucating clients on service systems; HIV prevention; tenants's laws and rights
© —_Bscort/tranulation services through our Buddy volunteer program

1. Demographic Data Supporting Need for Services:
‘According to the 1990 census data, there are approximately 500,000 documented Haitizn
immigrants in tbe New York City area. However, is estimated that there are one million
Hains in the entice cry When accounting forthe who are undocumented, and under

errors. Brooklyn bas 73.54% of Haitian immigrants settling in New York between 1983-1989.
Of this group, there are individuals who are HIV positive and are in despermie need of
assistmee. In Brooklyn, 71% of the AIDS cases arc Haitian immigrants,

According to the World Health Organization (1990), Haiti ranks amongst the highest countries
with reparted AIDS cases in comparison to other reported AIDS cases in the Caribbean.

‘There are also several barriers which impedes Haitian’s access to AIDS treatment and prevention
services. They are:

Welfare Reform/ Immigration Laws:

The new welfare reform an immigration ls geal inde axes to services for Walang ant
other insmigrants, HWP staff bas acquired a great deal of expertise in linking clients to

immigration attorneys and advocating for services on their bebalf despite the new Laws.

Socto-Political:

Haitians were inappropriately included as a high risk group for HIV/AIDS and berred from
denatng blood bythe Food sod Dog Adsininracon i 1983. Becese of hs pat nf curent
‘anti-immigrant sentiments, Haitians do not trust government fanded services and are reloctant
to receive secvices from any programs. At the Haitlan Women’s Program, trust is established
nd tics receive caltaraly seastive, Unguistcally appropriate services that pertained to thetr

2

Reon, 710 858 4542 03-20-98 08:15? 7008 #37


49

These problems directly impact on the ability to provide appro-
priate services, but more importantly, on the ability of people living
with HIV and AIDS to access services. Ryan White is only one ex-
ample. These problems arise with funding from housing opportuni-
ties for people living with AIDS and CDC as well.

In Brooklyn, the greatest risk factor for HIV infection is injection
drug use. However, not only injection drug users are at risk in this
category, but also their partners and children. As one of the man-
dates of the Ryan White legislation, the East New York/Browns-
ville HIV CARE Network completed a service delivery plan, which
assessed the need and provided recommendations on addressing
them. This document identified substances users as one of the most
difficult populations to regain services and substance use interven-
tions as one of the three highest needs.

Engaging individuals into services becomes more complicated by
HIV and AIDS, which is still viewed negatively in communities of
color. The combined stigma of substance abuse and HIV magnifies
the individual’s reluctance to enter into the service delivery system.
This is seen when out of necessity of individual enters the system
only to be denigrated, humiliated and ignored.

In recent years, early access to new more effective treatments
has become more important than ever. The fact that the highest
risk population is not accessing services presents a major public
health concern, including increased HIV infections, hepatitis A and
B, tuberculosis and other related illnesses.

There have been several studies indicating that one of the best
gateways for injection drug users to services has been needle ex-
change programs. There are only two needle exchange programs
available in all of Brooklyn. Nevertheless, these have experienced
great success with engaging injection drug users into services. They
have the unique ability to increase knowledge and access to service,
because they become a liaison between the injection drug user and
the service provider. Often they will attend appointments with the
individual to provide better transition. This is what early interven-
tion is all about.

The issue of needle exchange is not a simple one. Nevertheless,
needle exchange programs work, they save lives and increase ac-
cess to treatments and services.

Access to services for people of color and difficult to reach popu-
lations is critical. In truth, I, like most of us here today am ap-
palled by the way in which drugs and the violence which can result

impacted individuals families and our society as a whole. I am
disheartened every time I feel like my voice and the voice of people
living with and infected by HIV and AIDS are not heard when we
request assistance in stemming the epidemic by increasing nec-
essary resources.

Today I have testified before you as a coordinator, a person paid
to do this work, but I am also here as a woman of color, a resident
of the community devastated by combined diseases of poverty, HIV
and substance use. I am also a person who is proud to be a resident
of Brooklyn and who is part of a network and PLWHA Advisory
Board full of wonderful, committed and knowledgeable individuals
who have some pretty good ideas about how to improve the condi-


78

At first, | was a participant at Shades of Lavender. I then became a
volunteer as well. Shades of Lavender is a Brooklyn-based organization that does
AIDS outreach services in Brooklyn. Anyone is welcome to come to Shades of
Lavender. 1 have been a participant at Shades of Lavender for two years. Shades
is geared towards women in general, and specifically lesbian and bisexual women.
Women need a safe space to be a part of in order to share their experiences with

other women.

Lesbians are considered the lowest risk group for people infected with HIV
and AIDS. I think we should be considered as much risk as anyone else. We can
not say for sure if lesbians sexually transmit HIV or not. No one has done
research on the sexual transmission of the virus between women. One out of
every five lesbians that ] meet think that they are immune to HIV. The other four
simply don't practice safer sex. The fact of the matter is, no one knows if lesbian

sex can transmit HIV or not.

Shades of Lavender aims to address that problem. Shades distributes flyers


Cameron Craig

St. George Project

c/o Interfaith Medical Hospital
555 Prospect Place

Brooklyn, N.Y. 11238

program has greatly reduced the chances of becoming
infected through shared needles.

AIDS to me is a manageable illness. The correct
lifestyle and medications will enable you to live a long and
comfortable life. Unlike cancer, AIDS is a disease that you
keep for life. Once diagnosed, there are many opportunistic
infections that can make you sick that wouldn't normally do
so because of your compromised immune system. This is
why the correct and holistic response to AIDS is to
empower people with HIV to make informed choices about
their health. Supportive counseling is one such too! that is
necessary to transition AIDS from a fatal illness to a chronic
illness.

With AIDS, there is a still a lot of social discrimination
being done that doesn’t happen with cancer. The social
stigma that is apparent can be treated through supportive
counseling. Those in the most dire need of supportive
counseling are often the most difficult to get to attend
supporting counseling groups in the first place. It helps if

4


43

Mr. SHays. I want you to go slow here. New treatment and fund-
ing of treatment.

Mr. Cruz. And access to those new treatments. Then we have
the issue of welfare reform and how that impacts on allocation.

Mr. SHAys. Welfare reform?

Mr. Cruz. Yes, as implicated by the Federal Government, it will
remove Medicaid people that used to receive those services through
Medicaid and now they will only have the Ryan White funding to
get those services. So you have people living longer, you have new
people coming to the grant because of new——

Mr. Suays. I got the picture.

Mr. Cruz. Then you have the changing service delivery environ-
ment. You have funding that used to be used for certain people be-
cause they were very sick or because of the new treatment, you
have to change the formula from what you provide services today
for something that today they don’t need it as much as before, but
for which today you don’t have as much funding because new activ-
ity is needed.

Mr. Suays. Can I put it in my words to see if I understand? Are
you saying that we might have developed a formula for those who
are most sick and now we're able to maintain them in a relative
circumstance and therefore the formula doesn’t benefit them? Is
that what you said?

Mr. Cruz. No, what I’m saying is that you have, you have devel-
oped a service delivery system to take care of people who were
dying. Now you have less number of people that are dying, so you
would need to Provide other type of services.

Mr, Suays. All right.

Mr. Cruz. The last one I have for your list is the whole changing
environment fee for service structure to managed care. You're going
to have many service providers who may be able to adjust to this
new system of payment, but others will not. So we have a system
we created for 10 years that may be impacted by this change and
this is a tremendous change. We have over 100,000 people who will
qualify for managed care that are receiving services in a fee for
service structure, so those are the six challenges that I see from
the point of view that we will have to be confronting this year and
in the next 5 years.

Mr. Suays. That’s very helpful. Yes, sir?

Dr. Curn-Loy. Mr. Chairman, I'd just like to come back and com-
ment——

Mr. Suays. Just identify your name?

Dr. Cuin-Loy. Errol Chin-Loy, I am citywide coordinator for
AIDS policy, and co-chair of the Ryan White Planning Council.

Yd like to come back to your question of populations being denied
treatment for a variety of reasons. The Council directed the grant-
ee, which is the Department of Health, to insure that services go
to the community and the community providers. Working in con-
cert with our city agencies, we're insuring that no one is denied ac-
cess to protease inhibitors and we have serious difficulty with any-
one who would withhold treatment to patients who need it.

Mr. SHayYs. We weren’t getting into the position. I guess it’s im-
portant to establish your position.


129

to generate accurate, useful, coraplete and timely dete oa infection trends, and should inform our
‘fforts to battle HIV. The implementation of new HIV surveillance aystem nautt include the

+ Invelve affected commanitics in the development of a new sarveiliance
ayntem. New York nats seek the participation of al commuinitice Sighting the
‘epidemic in this process,

+ Assure strong privacy safeguards, New York's strongest

‘similar manner.

rin emir tycua for nostorng HV tor ‘Teese modeis should be
examined to develop an appropriate system for HIV surveillance in New York,

+ Raevaluate the type of dats collected by New Vort's public health officials.

neo. 710 58 4542 03-20-98 08:18PM PO12 #97


113

Mr. SHays. You're basically saying you want a borough controlled
service. In other words, you want a particular service to be avail-
able to everyone in New York City, but are you saying you want
that service to be borough controlled. I won’t spend much more
time on this. Obviously you all understand this.

Ms. Moore. What I’m trying to say is that a greater proportion
of citywide services are unsuccessful and this issue of consolidating
and having one service be distributed amongst the various bor-
oughs is ineffective. It’s been proven to be ineffective.

Mr. Suays. I think I understand what you're saying.

Mr. PEDRAZA. Even though the upper Manhattan is not part of
the outer borough, but anything past 72nd Street or 96th Street is
an outer borough in itself. Harlem is disproportionate in receiving
services, most of the services are located in a certain area in Man-
hattan. I myself as a person with AIDS, I have to go to services
downtown. It’s a burden. We talk about Manhattan, it’s a very
large island in itself, so I agree the boroughs out of Manhattan
need to have their own services, but there are also areas in Man-
hattan that are considered outer boroughs as well.

Mr. Suays. Fair enough. I'll let you guys wrestle with this one.
It’s a very valid point and one that won't be readily resolved, but
needs to be looked at.

Tm going to just say, I’m going to do a lot of questions and I’m
going to ask the deputy speaker if he has a quick comment or ques-
tion he wants to ask the panel. Then what we'll do—as long as you
don’t get interested in running for Congress here——

Mr. Towns. He’s my friend.

Mr. SuHays. I’d like all of you to speak to this real question of
whether you would disagree or agree with the earlier panel’s com-
ment and then we'll go to the Deputy Speaker.

Mr. LEvIN. I think I have one brief comment, I think it will be
covered very well by the other speakers, and that is it seems to me
that the adequacy of the medical providers and the services they
provide in Manhattan is sort of not on an equal basis with what
you see in Brooklyn.

You have probably from 59th Street to 23rd Street or 14th
Street, east and west side, maybe five or six, almost every 10
blocks you have a major HIV clinic. You have the newly formed St.
Luke’s Roosevelt on 59th Street, you have the new GMHC clinic on
24th Street, you have Bellevue, then you have St. Vincent’s, then
you have Gouvenere has something in the East Village and I’m
probably missing one or two. There’s St. Clare’s. And in most of
those centers you have very knowledgeable docs.

I don’t think you see that on a par in Brooklyn in the centers.
There aren’t enough centers, there aren’t enough doctors and
they’re not well educated.

tt frequently happens is many of the people in Brooklyn
know that those centers are good and they travel to those centers
to get their medical care, St. Vincent’s in particular and Bellevue
and those are great places, but they shouldn’t have to travel to go
there to get those kind of services if they don’t want to.

Mr. Suays. I understand. Thank you.

Ms. DeEMarrals. The one issue that was not addressed by the
panel before is medication for children. The drug companies have


122

Mr. SHays. Thank you very much. I appreciate both you being
under 2 minutes.

Ms. PaGE. My name is Darlene Page, AIDS ministry coordinator,
Church of the Open Door, located here in Brooklyn, 901 Gold
Street, Dr. Mark P.C. Taylor. We’re familiar with Ed Towns and
I want to thank you, Congressman Shays, for having us.

The ministry just started at the end of last year and just in get-
ting some background information putting, together referral serv-
ices, I found that we couldn’t locate many Brooklyn services. When
we had to refer people, most of the time we referred them to a
Manhattan source or service. Even things like they had mentioned
earlier; the food program. There are really not any food programs
in Brooklyn where a person can come and get a hot meal or they
can bring their family to get a hot meal. There were a lot of other
things that I found that they had in Manhattan and didn’t have
in Brooklyn. And so when my pastor’s secretary faxed me your in-
vitation today I came to see who is in Brooklyn and I’d like to know
how do we get together and how do we network and I would like
to leave my name and get the names of other le who are in
the services of helping People with HIV and AIDS. Our service pro-
vides spiritual support, education on the disease and prevention,
fellowship with people who have HIV and their families and refer-
rals. So thank a hee very much.

Mr. SHays. Thank you very much.

Mr. BETHEA. afternoon, Chairman Shays, Congressman
Towns. My name is Michael Bethea, I’m program coordinator with
Exponents/ARRIVE. I want to give a historical perspective of sy-
ringe exchange. I’m a native Brooklynite, I lived in Bridgeport for

years.

Mr. SHays. Those had to be the best years of your life.

Mr. BETHEA. What happened in 1985, there was an agency,
ADAP, and a gallant woman who passed away 2 years ago, Yo-
Janda Serrano, we were involved in implementing needle ex Ss
in New York City and there was a pilot program that happened in
1985 and 1986. There was some data that came from that pro-
gram and that data was studied in Yale, New Haven, so actually
the first syringe is started in New York City, and
it was housed in the New York City Department of Health. So
that’s where it actually began. Then you started having under-
ground programs that went on from that point.

But the data that came out of Yale, New Haven proved and
showed most effectively that syringe exchange did in fact work.
What it in fact showed is that it li people who were using the
syringe exchange programs to other services, and I think that’s the
most important thing that we need to know about syringe ex-
change, is that it’s basically a bridge to services. You know, when
we start hearing about needle , we start thinking about

iving junkies needles and in fact that’s not what it’s about at all.
fact, what it is about is linking people to a variety of services.
That’s why I think the People here that have testified today are ad-
amant about getting those services in Brooklyn, specifically be-
cause there are two syringe exchange programs in Broo!
I believe there’s another one getting ready to start.
OK, thank you very much.

klyn, and


127

we lost or funding and it’s scary because we have over 300 clients
on our caseload, and we have to house them. We not only house
our clients, we followup on them after they’re housed, and a lot of
them are saying, “well, what’s going to happen to me,” because, as
long as we are ing them, the landlords treat them well, make
sure they have heat and hot water.

We had to stop our intake and it’s just really scary. What are we
going to do? We will have to refer clients out, but we don’t exactly

yw yet where we're going to have to refer those clients. We have
clients that are housed and they’re not used to living by them-
selves, so they would come in and just talk. We touched a lot of
their lives and they have touched mine. I know that I will have to
et another job because I have to pay bills, but—I’m so sorry. This
field, my heart is in this field. Thank you.

Mr. SHays. Thank you.

Mr. BRIDGES. afternoon. My name is Vincent Bridges, 'm
the housing specialist for Black Veterans for Social Justice, HOPA
program, Housing Opportunity for People with AIDS. To add on to
what Ms. Peterkin as well as McFarland has said, we recently
found out last week, I believe, that our program is going to be cut.
For what reasons, we don’t know. Earlier this week, earlier this
week we received a phone call from another agency who is receiv-
ing funding, and they’re in Manhattan, and they us and told
us they were referred to us by the Ryan White program because
we provided good services for our clients. My question is, if we pro-
vided that much good service to our clients, why are we being
closed and why are they being open?

Mr. SHays. We are going to adjourn this hearing. You asked
some very important questions. I know that Mr. Towns in particu-
lar and his staff are going to followup on some of the why’s in the
full committee.

I do need to end this hearing now, and just tell you that I
learned a lot and our committee is not a committee that just learns
a lot. We followup. We've seen a lot of our hearings result in legis-
lation and appropriations, so I thank all of you, our first panel, our
second panel, and our third panel, and those of you who are in the
audience, and God bless each and every one of you.

This hearing is now adjourned.

[Whereupon, at 1:04 p.m., the subcommittee was adjourned.]

[Additional information submitted for the hearing record follows:]


CONTENTS

Hearing held on February 20, 1998 ..
Statement of:
Gadeson, Jeannette, deputy president, the Borough of Brooklyn ... sess
Gil, Rosa, special advisor to the mayor on Health Policy, New York,
NY; and Humberto Cruz, director, Division of HIV Health Care, New
York State Department of Health .. eee
Pedraza, Jairo, HIV Health & Human Services Planning Council of New
York City; Antonne Moore, coordinator, East New York/Brownsville
HIV Care Network; Jules Levin, executive director, National AIDS
Treatment Advocacy Project, Adaline Q. Demarrais, Evergreen Net-
work; Christine Meyers, Shades of Lavender Program Recipient, accom-
nied by Yannick Durand; Cameron Craig, St. George ject, Inter-
ith Medical Center; and Gwen Carter, fav Prevention Alliance of
New York City ee
Letters, statements, etc., submitted for the record by:
Carter, Gwen, ‘HIV Prevention Alliance of New York City, prepared state-
ment of .. tee
Craig, Cameron, St. George Project, Interfaith Medical Center, prepared
statement of
Demarrais, Adaline Q., Evergreen Network, prepared statement of
Gil, Rosa, special advisor to the mayor on Health Policy, New York,
NY, pre] statement of ...
Kersaint, Ms., prepared statement of
Levin, Jules, executive director, National AIDS Treatment Advocacy
Project, prepared statement of ....
Meyers, istine, Shades of Lavender Program
statement of......
Moore, Antone, coo: a
work, prepared statement of ...

ipient, prepared

(I)


106

Gwen Carter Testimony
HIV Prevention Alliance of New York City
Page 1

ABK HIV

The HIV Prevention Alliance of New York City is coordinated by the Harlem
Directors Group (HDG), HDG is a collective of decision-makers representing Harlem
based community agencies and institutions that provide HIV related services to
individuals and families. The HDG advocates for a fair and equitable distribution of
resources based on community need, and works to establish and maintain a
coordinated HIV-related service system that effectively meets the needs of Upper
Manhattan residents.

The following organizations are members of HPA:

Caribbean Women’s Health Association Brooklyn
Gay Men of African Decent Manhattan
Greater Brownsville Youth Council Brooklyn
Haitian Women’s Program Brooklyn
Harlem-Dowling Westside Center for Children and Families Manhattan
Harlem United Community AIDS Center Manhattan
Life Force: Women Fighting AIDS Brooklyn
Minority Task Force on AIDS Manhattan
New York Council of Smaller Churches Manhattan
People of Color in Crisis Brooklyn
Southeast Queens Clergy for Community Improvement Queens
Sub-Sahara AIDS Rescue Staten Island/Brooklyn

For information about the HIV Prevention Alliance of New York City,
contact Leo Rennie, Project Director, at the Harlem Directors Group,
2090 Adam Clayton Powell Jr., Blvd., Room 111A, New York, N.Y.

10027. (212) 531-0049 [phone}/ (212) 531-4405 [fax}


66

1998 again at NYU we held our best forum to date on selected special topics of great
interest and 1,500 people registered to attend. For the first time we offered continuing
medical education (CMEs) credits to doctors and nurses for attending the forum. This was
a success as we attracted over 150 doctors and nurses for these credits. We are
expanding into educating doctors as well as patients. We are currently planning for the
first time to conduct a forum just for doctors in Brooklyn, NY in March 1998. This is a
specialized forum just for doctors who are not very knowledgable about treating HIV.

In the meantime our newsletter, NATAP Reports, is distributed worldwide and our newly
designed web site is also read worldwide. Our treatment information is well received by
both doctors and patients. | will bring copies of the current 40-page double issue of
NATAP Reports to the hearing in Brooklyn so that you can see the type of information we
provide. And of course you can read our web site, <http://www.natap.org>. I believe our
web site supplies the most comprehensive, up-to-date and accurate treatment
information on the interme

I hope | haven't bored you with this endless description of NATAP's activities but | was
asked to describe who | am and the work that we do. | think that the work I do does in fact
allow me to have certain insights into the needs of the HIV community and so a
description of my work allows you to see where | get my insights.

Financial Disclosure. in accordance with your request ! am disclosing that in 1997,
NATAP received a financial grant from the New York State AIDS Institute for about
$74,000 to conduct our 7-month treatment education program in Brooklyn, New York.
It is not a direct grant from the Federal government but | assume some of the funding
comes from Ryan White. This is the only government funding NATAP receives.


52

Page 2

also because, though they may provide services more effectively to people of color,
local community-based organizations do not have access to the resources to develop
the type of infrastructure which are available to other larger organizations

To date, despite the availability of more accurate data, funding agencies continue to
utilize methods of data collection and analysis which do not present a reliable picture of
the need in Brooklyn. This problem has manifested itself in the recent Ryan White Title
| awards which blatantly ignored the HIV Health and Human Services Planning Council
and the 1990 Ryan White Legislation mandates to focus on both demographic and
geographic high need areas. These award decisions left serious gaps in communities
of color which were only partially filled by the very same funding in previous years
Some corrective efforts have been made, mainly as a result of an increase in New York
City's Title | award. thanks to a letter from Congressman Towns. However, these efforts
have not completely rectified the gaps left by these decisions nor addressed the
underlying problems - the lack of adequate resources and the continued use of

inappropriate data regarding need

These problems directly impact on the ability to provide appropriate services, but more
importantly on the ability of People Living with HIV/AIDS to access services. In reality,
it is not simply a matter of inadequate disbursement of funds, but also a matter of
increasing Ryan White Funding in New York City. Though the number of people dying
from AIDS in New York City has decreased, they remain higher among people of color.
In fact, one of our neighborhood Hospitals has noticed an increase in AIDS admissions
These differences are particularly clear for women with 88% of AIDS cases being
among women of color. The decline in AIDS deaths for African-American women was
59% as compared to their White counterparts at 73%. If services are not targeted to
these communities, we will not see a change.


101

Gwen Carter Testimony
HIV Prevention Alliance of New York City
Page 6

population. First, | would like to describe the overall goal of HPA, which is to
expand the capacity of Black service providers to deliver effective HIV prevention
services. Second, | will discuss the potential that HPA has to serve as a model for
promoting public health in at-risk communities.

HPA: Addressing Capacity Building Needs in Black AIDS Organizations,
Coordinating Services and Eliminating Service Gaps

Organizations like the twelve that comprise HPA are credible community
resources that offer the infrastructure through which any serious initiative that
addresses HIV/AIDS related needs in our communities should be provided.
However, the ability of our agencies to provide depends on our capacity to provide.

Today, | offer the perspective of many community based providers and urge your
attention and leadership on this frequently overlooked but critical component of
meeting HIV-related needs of Black communities in Brooklyn, and throughout New
York City.

Capacity building is often discussed among HIV prevention program
developers and policy makers. Unfortunately, public discussion has always focused
more on finding a cure or treatment, rather that health promotion and disease
prevention. If we are able to re-orient this public mind set, we will be taking the
first steps toward eradicating HIV in Black communities. There is a critical need for

building the organizational and community capacity to change individual and


26

DEPARTMENT OF HEALTH

BUREAU OF EXTERNAL AFFAIRS
128 WORTH STREET, ROOM 329

NEW YORK, N.Y. 10013

(212) 788-5290 FAX: (212) 788-4749

BENIAMIN MONICA, MD. MPH. FREDRIC D. WINTERS

‘Acting Commissioner ‘Associate Commissioner
FOR RELEASE Contact: Fred Winters
Monday, February 2, 1998 212-788-5290

MAYOR AND HEALTH COMMISSIONER ANNOUNCE DRAMATIC DECREASE IN
DEATHS DUE TO AIDS IN NYC

AIDS DEATHS DROP ALMOST 50% IN ONE YEAR, 63% IN TWO.

Today, New York City officials, speaking in New York and Chicago, announced
the results of a City Health Department study that shows that deaths due to AIDS
dropped precipitously in 1997. Based on the work of Dr. Mary Ann Chiasson,
Acting Health Commissioner Dr. Benjamin Mojica and a team of Heaith
Department scientists, the Mayor announced that in 1997 AIDS deaths dropped to
virtually half of their 1996 level, a 48% decrease, and a full 63% decrease from
their 1995 level. At the same time, in Chicago, DOH Assistant Commissioner Dr.
Chiasson presented the study’s findings at the 5th Conference on Retroviruses
and Opportunistic Infections and at a subsequent national press conference.

The Mayor announced that based on solid preliminary figures, deaths due to
AIDS had dropped to 2,577 (provisional) in 1997 from 7,046 in 1995 and 4,998 in
1996.

Mayor Giuliani said, “New York City, with 3% of the US population, has 16% of its
AIDS cases. Over 100,000 people in this city have been diagnosed with AIDS
since the beginning of the epidemic and 65,000 of them have died. In 1995, on
average, 20 New Yorkers died from AIDS each day; in 1997, that number dropped
to 7. These numbers are especially significant to the scientists and especially
hopeful to all of us who have had family, friends and colleagues affected by this
devastating disease. :

“Further, this news is especially welcome since they are across the board, as
they were last year. Men and women, young and old, black, white, Hispanic and
Asian, have all shown similar improvement.”

more —


22

current HIV service programs developed around an acute. end-stage model of the disease. Those
programs will still be needed. but more and more people with HIV infection are beginning to
think about things like returning to work. juggling medication and employment schedules. and
covering enormous medical bills into the indefinite future. Therefore. the infrastructure of our
HIV service programs. most of which are delivered through community-based organizations. will
have to adapt to the changing needs of their clients. Some of these needs include: chronic
medical care. support for medical compliance. job training, benefits counseling and other
services that will allow individuals to function in society while maintaining their health. And
there continue to be many people with HIV infection who are not in the care system at all: we
need to expand our outreach activities and to bring them into HIV counseling. testing and
treatment.

Fourth. we cannot forget that these drugs are far from a panacea. Not only are they not a
cure. but they do not work for everyone. Some people are already resistant to elements of the
combinations. some cannot tolerate the side-effects, and some simply do not respond to them.
For the foreseeable future. we will continue to face an epidemic in which many. many people
will become seriously ill. and many will die, Thus. our service systems must. in a sense. adjust
to dealing with two epidemics: the epidemic of the treatment responders. and the epidemic of the
non-responders.

Finally. we cannot abandon our prevention efforts. HIV remains a very serious illness.
and it is incumbent on us to make every effort possible to prevent new infections. We cannot

allow a false sense of security. or an overstatement of the treatment improvements we have seen


105

Gwen Carter Testimony
HIV Prevention Alliance of New York City
Page 10

cardiovascular disease, substance use, and injuries, including domestic violence.
The project has the potential to develop a new model of meeting a variety of needs
of populations with multifactorial risks in a way that may have significant public
health, social and economic benefits.

Now, let me return to the key topic of today’s hearing, long-term treatment
options. Treatment options for the city’s Black community, indeed any at risk
community, cannot be considered in a vacuum. Community-based providers who
are knowledgeable of the behaviors and norms of at-risk communities, and have
access to these communities, must be involved in the design and implementation of
strategies to make treatments accessible to those most in need. Prevention,
treatment education, adherence and compliance programs, case management and
coordination of care must all be delivered by community-based organizations that
reflect the target population. Otherwise, all strategies are doomed to failure. Our
community-based agencies must be prepared for the role that they are going to
have to play in a coordinated approach to combating the epidemic in the Black
community, and other vulnerable populations. Organizational capacity and
community capacity must be developed and expanded to meet the task. We at
HPA are pleased that we have this opportunity to take some initial steps in the right
direction. We respectfully request that you join us in our efforts.

Thank you.


34

TABLE 6 (Cont.) Use of Combination Antiretroviral Therapies by Race/Ethnicity

CHAIN Interviews Conducted between January 1997 to September 1997

Type of Antiretroviral Therapy White Black _Latino
(N=) (54) (183) (120)
None 22% 35% 27TM%
Monotherapy TM 13% 3%
2 Drug Combination Therapy without % 15% 22%
a Protease Inhibitor
1 or 2 Drug Combination with a P.I. 6% Th 13%
3+ Combination with a P. I. 56% uw 35%
Total 100% 100% 100%

Pearson Chi Square (8)=26 p<.005

F.,P.2


115

is CarRTER. They both give me money. I don’t think I
should——

Mr. Suays. Listen, let me say something to you. That was prob-
ably the most cogent comment made today. But all of your com-
ments were done in good taste, so I don’t think anybody would be
offended by your disagreement with the previous panel and, frank-
ly, they may want to come back and tell you why they were here.

Any comment you want to make, then we'll get into some com-
ments that people want to make. Let me say before the Speaker
makes a comment, who in the audience would like to address the
panel? We have eight. OK, if we can get through, just about eight,
we can have a nice dialog. So Mr. Speaker?

Mr. GRIFFITH. Thank you very much, Chairman Shays, Congress-
man Towns. I certainly commend you on all these hearings here
today in Brooklyn. The AIDS epidemic is a critical one, not only in
New York, but throughout the Nation. However, because we rep-
resent this area, we are genuinely concerned about the services and
the funding of programs in New York State. I notice that we had
Rosa Gil and Dr. Cruz speak this morning. Now, I serve as a mem-
ber of the AIDS Institute so I'm familiar with a number of the
issues that are there. I know most groups normally come up during
the budget year to ask for additional funding. The AIDS epidemic
is of such concern to this State that we have attempted to make
every effort to provide what we consider adequate funding. It
doesn’t necessarily mean that we do that, but that we try to do it.

This year I think that the funding is a little bit less than antici-
pated and I think many of the. AID: groups have called that to our
attention. We're trying to take a look at that, but the one issue
that concerns me is the one raised by Mr. Levin as it relates to doc-
tors not being adequately repared for treating or counseling AIDS
programs in Brooklyn and I think that’s a very serious point that
you raised, and I would like to pursue that a bit further with the
AIDS Institute, if you would provide me and my office with some
sort of background and support documentation as it relates to
training of doctors and service offered by doctors in Brooklyn as op-
posed to service offered in Manhattan.

I know that Manhattan receives quite a bit of funding only be-
cause there’s one group of specialists who were sort of pioneers in
the area, and they received the largest amount of funding. I don’t
want to begin naming groups, because I don’t think that would
help. I know that this is one of the largest coalitions in Manhattan.
However, that doesn’t mean we should stay away from Brooklyn,
and since I’m from Brooklyn and I have concerns about that and
Congressman Towns has some concerns about it and I’m sure
Chairman Shays has concerns as well, we want to be sure that
gome Kind of equity is perceived by the constituents and clients in

rooklyn.

So I would ask you to either call my office or write me a letter
documenting exactly what you think has not been done, what is
lacking in terms of doctors.

Tm very concerned about this. People go into hospitals, they go
into clinics and do not receive adequate medical care. The doctors
are just not being as serious as they could possibly be because of
the Jdnds of clients they’re serving. Take these other doctors, put


136

6 Testimony,
the guardian of her siblings;

@a 21 year old man with a T-Cell count of 10 who Medicaid case has been closed
by mistake and is unable to purchase the protease inhibitors he has been taking, which
can create a life-threatening condition unless medication is obtained immediately,

@a mother with full-blown AIDS whose welfare case including food stamps,
Medicaid, and rent payments is closed because she was hospitalized at the time she was
to recertify at the welfare office;

@ the sole surviving child also HIV+ whose mother, father, grandparents on both
sides, and mother's siblings all died of AIDS, and who is unable to obtain HIV related
treatment because his caretaker has no legal custody or authority to consent to treatment.

While Brownsville Brooklyn ranks “number one” in need of client advocacy services
throughout New York City, our Legal Services program, the sole provider of free legal
services to the communities of North Brooklyn including Brownsville, receives only
$200,000 in HIV/AIDS funding to serve all of North Brooklyn. Our staff ratio to HIV-
infected North Brooklyn resident is approximately 1 staff attorney or paralegal to every
4000 infected residents. With our two attorneys and two paralegals we are able to assist
only 20% of the HIV+ individuals who seek our representation.

Conclusion

“Long Term Treatment Options” will not become a reality for many living with HIV
unless and until access to appropriate medical care and treatment, and other HIV-related
care and services is addressed. By locating medical care and services in the
neighborhoods of high need for these services, and by greatly increasing the number of
trained legal advocacy staff available to people living with HIV, major barriers preventing
access will be reduced significantly, if not eliminated.

Respectfully submitted,

Carol Horwitz, Director
Comprehensive Rights Unit (rrwaios | legal advocacy)

Brooklyn Legal Services Corporation

Brooklyn, NY


58

are comfortable in their community, working with their local orga-
nization, and there must be improved linkages for services and im-
proved funding for these little organizations, because many of these
individuals don’t take treatments because they don’t understand
them or they're not adherent because they don’t understand that
they should be adherent and many other reasons besides that. I

ink, thank you very much.

[The prepared statement of Mr. Levin follows:]


112

all are very active in the field, it tells me that Ms. DeMarrais, you
are kind of on the cutting edge of a program that we need to see
expanded to other parts of our State and the country.

Let's get on your topic.

Mr. Pepraza. It was about AIDS reporting and HIV reporting,
that’s the issue that you asked the previous panel.

Yes, I understand very much the view from the State and the
city level for getting more funding to the city and the State, but
it’s a very, very controversial issue in the community, especially be-
cause name reporting, I assure you, will deter people from getting
tested. Youths will not test if they have to submit their names. Im-
migrants will not test if they have to submit their name, because
they’re in fear of INS. There are many fears in our community.

Mr. Suays. Fair enough.

Mr. Pepraza. And I think that needs to have a lot more time to
be addressed so we can all give our points of view on the issue of
HIV. I know the need for our city to receive more money, yes, more
money is needed, but at what price.

Mr. Suays. I notice sometimes in restaurants in Connecticut ’'m
introduced to some of the workers and all of a sudden they dis-
appear. If they do it just based on meeting a Member of Congress,
Tm sure they don’t want to have their names written down.

Let me pursue that thought, a question where you were respond-
ing earlier to the panel. Was there any comment made in the pre-
vious panel that you want to take issue with or reinforce? Yes?

Ms. Moore. Actually, yes, now that you ask.

I think that in the panel before, I think there’s a misunderstand-
ing of the proportion of funding that’s actually within Brooklyn. As
I stated in my oral testimony, in fact, only 17 percent of the awards
were funded to Brooklyn, whereas 27 percent were funded citywide,
and as you've heard from other testimony, citywide services do not
work in Brooklyn.

People, most of the time these citywide services are based in
Manhattan, people are forced to go, people living with HIV and
AIDS are forced to travel across the bridge, however they do so, to
go into the Manhattan based agency to receive those services. They

lo not work and yet they continue to be funded by these programs,
and I think that’s a very big issue, particularly with regard to ac-
cess to services. So I wanted to point that out.

Mr. SHays. When you say citywide service, do you mean a city-
wide service based in Manhattan?

Ms. Moore. Most of them are, yes.

Mr. Says. You want a service to be universal in all the bor-
oughs, even in the outer boroughs like Manhattan?

Ms. Moore. There are some services which can be implemented
throughout the city. Sometimes, there is some success with actual
delivery of food services, let’s say, but you can’t, to use this exam-
ple of food services, within the community, my community, food
services wasn’t funded, and that’s a big problem with the commu-
nity, because the food and nutrition services in our community
were CO! ate, which meant that people who were homeless, peo-

le who lived in a shelter could go there to congregate with other
folks, but also more importantly, they could receive other services.


16

Testimony for the Congress of the United States
Subcommittee on Human Resources
February 20, 1998
Testimony given by: Christine Meyers
Accompanied by Dr. Yannick Durand
Shades of Lavender
470 Bergen Street

Brooklyn, N.Y. 11217

Hi, I'm Christine Meyers, and I am a peer educator and youth volunteer at
Shades of Lavender, which is funded by Brooklyn AIDS Task Force. I am twenty
one years old. 1 have been a volunteer in different places since I have been 15,
simply because | did not see youth such as myself listening to anything that the
adults had to say. I though I might benefit myself, as well as benefit other youth,

if I started speaking to other youth about AIDS.

T lost my cousin to AIDS before I started volunteering. As time progressed,


AIDS Mortality
page three

Deaths from HIV/AIDS, New York City, 1983-1997

Year AILAIDS and HIV Infection deaths. NYC
1983 425

1984 952

1985 1,663

1986 2,650

1987 3,192

1988 3,773

1989 4,282

1990 4,616

1991 5,228

1992 5,789

1993 6,120

1994 7,102

1995 7,046

1996 4,998

1997 2,577 (Provisional)

Prepared by NYC Department of Health


94

Mr. SHays. Let me interrupt you, because I want to be helpful
to you. You have an 11-page statement that will take you a ong
time to go through if you intend to read it all. I just want to tel
you now, because I don’t want you to go through half of it and then
spend 30 seconds summarizing the last half.

Ms. CarTER. I'll do some paraphrasing, thank you.

Mr. SHays. Thank you. Sorry to interrupt you. Feel free, you
have a little bit more time because of my interruption.

Ms. Carter. OK.

Sophisticated medical treatments and access to new medical ad-
vances seem to be more of a privilege for a certain class of individ-
uals who more often than not live outside of Brooklyn and who are
frequently not black or Latina. This is the very issue that I would
like to discuss today.

Fundamentally, I'd like to direct my remarks to the role of the
Federal, State and local governments in responding to HIV/AIDS
in New York City black community with a specific emphasis on the
role of community-based AIDS providers rooted in the community.

Today ’'m representing, the HIV Prevention Alliance of New York
City, acronym HPA. The HIV Prevention Alliance of New York City
is a collaborative development among black AIDS service providers.
HPA provides technical assistance to these HIV prevention service
providers in developing organizational capacity, needs assessment
and strategic planning to perform analysis, service planning and
infrastructure development. The critical role played ‘f the black
community-based organizations in this epidemic has also been ig-
nored.

All of the agencies involved in the coalition of boards of directors,
executive directors and staff are predominantly black and all have
experience and exceptional track records in delivering HIV preven-
tion services. Each of the patients is most assured that ours is the
type of organization that needs to be supported, not only by the
public, but also provided funding to combat the transmission of

TV in our communities. HPA has five member organizations
based in Brooklyn. In addition to Life Force, they include Carib-
bean Women’s Health Association, Haitian Women’s Program,
Greater Brownsville Youth Agency and People of Color in Crisis.
These organizations all deliver HIV prevention strategies that are
created and delivered in community-based settings whose leader-
ship and staff reflects the target population.

n we first came together, our main concern was the exclu-
sion of agencies like ours from Federal HIV prevention funding and
other city, State and Federal resources. Significant developments
are progressing without serious thought or consideration of the role
of our type of organization in the fight against HIV/AIDS in Afri-
can-American communities. Public health strategies will fail in
black communities unless respected community representatives are
engaged, in the design and implementation of new programs.

‘oday’s hearing is a monumental undertaking, in that it speaks
to the importance of coordinating a strategic response among com-
munity, State and city providers to improve prevention, care and
treatment options in Brooklyn. Life Force participates in HPA be-
cause HPA offers a model to stimulate just such an opportunity for
coordination and partnership across sectors. HPA focuses on im-


9

tions. These medications are so new, however, that many questions
remain unanswered, and even the recently released guidelines ex-
tend significant discretion to physicians in determining the best
course of treatment for an individual patient. Thus, while the
guidelines recommend combination anti-retroviral therapy for all
patients with symptomatic HIV infection, they do not definitely es-
tablish a stan of care for asymptomatic patients, instead, en-
couraging physicians to discuss treatment recommendations with

tients based on an array of individual considerations. The guide-
lines do clearly express a preference for triple combination therapy,
which has become essentially the “gold standard” for HIV care, for
those patients whose medical status warrants it.

The new standard of HIV therapy creates a range of gpportuni-
ties and challenges for the HIV services system in New York City.
For the first time, we have a demonstrable ability to prolong life
for most HIV infected individuals, to improve the health status and
the level of functioning for many if not for most patients, and to
roll back disease progression for some who have been seriously ill.

But accomplishing these things, particularly over time, will not
be easy. The new igs are not a cure, and until another genera-
tion of drugs comes along or further research demonstrates that
these drugs have the ability to clear HIV from the body or to
render it harmless, the reality is that people must continue to take
these drugs indefinitely. And they are not easy to take. Each of
these drugs in the combination must be taken two to three times
a day, on varying schedules, before, during or after meals, and
often with accompanying side effects. Thus, helping people to main-
tain adherence to HIV treatment has become a larger challenge.

Since the time that protease inhibitors became available, and as
triple combination therapy has become the standard of care for
many patients, New York City has been committed to ensure ac-
cess to this regimen for all HIV infected individuals for whom it
is indicated. To ensure effective access, two things are necessary.
First, there must be a system in place to permit patients to obtain
the drugs despite their substantial cost, often $15,000 or more per

year.

Second, the health care delivery system must be capable of edu-
cating patients about the availability of these drugs and providing
the primary and ongoing medical care required to assess patients’
needs for these drugs, to work with patients to establish a medical
routine that they can follow, and to monitor the impact of medica-
tion and assess the need for change in the medical regime over

time.

I would like first to discuss the publicly financed system that are
in place in New York City, largely supported by the Federal fund-
ing, to make these medications and accompanying health care
available to the HIV infected population. Then I would like to
share the data that we have on the degree to which we are suc-
ceeding in establishing widespread access to these medications,
particularly across racial and ethnic communities in New York

City.

While AIDS affects people across the social economic spectrum in
New York City, it has had the heaviest impact on low income indi-
viduals and so, not surprisingly, the large source of payment for


1

more and more of my friends, people my age, either died from AIDS or became
infected with HIV. It wasn't a question for them of being safe, it was a lack of
information that they needed to know. No one taught them about the dangers of
unsafe sex. They were not given a choice about safer sex. They were simply
thrown a condom, and it was expected that they would know what to do with it,

and how to tell others what they wanted to do with it.

Asa peer educator, I help educate other youth on AIDS education. [ talk to
young women about how to use dental dams and condoms. | show them that safe
sex is important. The women I teach this to actually take this information and use
it wisely. Youth listen to youth, as opposed to youth listening to adults. My
group is small, and we form a rapport before we start talking about sex. | make
them feel comfortable enough to ask questions about sex. My peers who
participate in the program have told me that after they have participated in Shades
of Lavender program, they now bring up safer sex with their partners. We have
spoken specifically about bringing up safer sex, condoms and dental dams with
their partners. I give explicit safer sex information, which youth can use to

negotiate their own safer choices.


83

At Shades, I can give clients the best possible answer about HIV transmission and
lesbians, but I can not say anything definite because no one has told us any
definitive answers. There should be federal AIDS research done specifically on
the transmission of HIV between women. This research would benefit everyone
who has sex. Once we know if it is possible for a women to get HIV from another
women, that information affects all lesbians, all bisexual women, and all women
and men who have sex with each other. It would also give everyone who wants to

practice safer sex more information, more tools, and more choices in how to do so.

In conclusion, I would ask Congress: how can the youth of today be adults
of tomorrow if we are not being told what HIV/AIDS really means? Ignorance

equals death just as silence does.


5

result. In the face of this reality, as we listen to testimony today,
we must ask ourselves the following questions: How do we direct
funding to reflect the changing needs of people with HIV? We must
make sure that poor minority communities have access to the kinds
of treatment and services that are the difference between life and
death. As a representative of such a community, I would like to ex-
press my gratitude to today’s witnesses from the community service
organizations who are fighting to provide such access.

would also like to thank the panel of city and State officials for
coming today. I look forward to working with you closely to insure
that these organizations are given the necessary resources to serve
the people with the most desperate need.

Thank you, Mr. Chairman. This is an important issue in my com-
munity and the community of color. Thank you for allowing me to
take the time to share my thoughts with you.

Mr. SHays. Thank you, it’s wonderful to have you participate.
Jerry Nadler.

Mr. NADLER. Thank you very much. Let me first express my ap-

reciation to the chairman officiate of Connecticut for bringing this
~aring to Brooklyn and particularly to Co! ssman Ed Towns,
who took the initiative in getting this hearing brought to Brooklyn.
I am participating this morning, but unfortunately, I can’t stay
very long. I can only come here to make an opening statement and
to welcome the committee and to express my appreciation for it.

I want to say that it’s very important that these hearings be
held, and in particular that we’re in a particular moment of change
in the progress of this epidemic and our understanding of it. The
introduction of the protease inhibitors and the triple therapy in the
last year and a half, really, has changed everything. We now know,
for example, that it is advisable or essential to begin treatment
with these drugs as early as spogsible, as soon as we realize that
a person is infected with the HIV virus, yet our laws and our pro-
grams still reflect an earlier understanding, and therefore, Medic-
aid funding, for example, only begins when a diagnosis of AIDS is
made and does not provide funding in the earlier period that can
last for years, when we know that the drugs, the treatment, ought
to be initiated. So we have to study changing our laws to reflect
this new understanding.

We have to begin to address needs of increasing population that
will be living with AIDS on a long-term basis as the disease hope-
fully changes from an acute death dealing disease to a chronic dis-
ease in which people can live with it for years and maybe hopefully
decades, but in which people have to be taking very severe drug
regimens and expensive drug regimens this entire time period.

fe have to start dealing with the needs of long-term, housing,
health care and pharmaceutical needs of a population that will be
living with the disease for a long time, which we haven't really ad-
dressed yet. We have to see that our Ryan White title I funding
is increased sharply. The President proposed increases in ADAP
funding, but only a modest increase in title I funding.

I want to say one thing, I’m sure it will come up at some point
in the hearing, I’m sorry I won’t be able to Participate in a lively
discussion, it has been in every forum that I’ve been at, but I be-
lieve it’s essential that we promote needle exchange programs as


ill

similar to this, to tell me what they might be. Jairo, you wanted
to make a comment? Sorry for the mic back and forth, here.

Mr. PEDRAZA. I’m sorry, I just want to use the problem to a ques-
tion that was asked of a panel previous to us, that was HIV sur-
veillance, documenting as compared to documenting AIDS
cases.

Mr. SHays. Before you ask, answer this, can any of you point out
a program in this area that might be somewhat similar?

Ms. Moore. There’s a few programs that are somewhat similar
that probably cover some areas of it, though maybe not as com-
plementary. know SUNY Downstate has a program where they

ave support groups of children who are survivors of parents who
have died of AIDS or who are HIV positive themselves. Normally
the children need to know their parents are HIV positive.

Mr. SHAYS. The bottom line, it’s not very comprehensive. The
program may be, but it’s not covered in a lot of areas, so Brooklyn
per se or Harlem doesn’t necessarily, you’re not aware of a citywide
program like that?

is. Moore. Not in the outer boroughs, nothing.

Mr. Suays. You make a mistake. You can’t call it outer boroughs,
that’s the first mistake. Outer borough sounds like it’s not as im-
portant as the inner borough. I’m being a little facetious.

Mr. Towns. But you’ve been accurate, Mr. Chairman.

Mr. LEVIN. On my board of St. Vincent’s Services, which is two
blocks from here, it’s a social services organization, under the guid-
ance of the Catholic church here in Brooklyn, and they have a
somewhat comprehensive program for children, they deal with
adoption and foster care and they have a program for children or
foster care and adoption who have HIV——

Mr. SHays. Do they provide services for the children while their
parents are still alive or are they basically picking up after the par-
ents have died?

Mr. LEVIN. Frankly, I don’t know the details of all their pro-
grams, I hear about it when she comes home at night, they have
a program here, and it sounds comprehensive, they have nurses
and social workers who deal with it and they come to our forum,
so I know they have supportive staff there.

Mr. Says. Let me ask, is anyone else aware of such a program?
Ms. CarTER. I’d like to say that last year Life Force and Brooklyn
Legal Services were funded to do a joint venture to address just
this issue, of parenting planning, what we did was combine an at-
torney with the Life Force peer educator we know out in the com-
munity to places where women who might have that situation
would be and inform them of their rights from a legal standpoint
and most of the women who were involved in the program from our
point of view were women who have been through that and were
able to tell them what to expect and to help them through it on
an emotional level, how to plan for the future of their children. So
there are limited programs.

Mr. SHays. I would come to the conclusion that there’s really an
outstanding need to focus attention on this area, and this is not a
criticism of Brooklyn or Manhattan or Connecticut, but if this is
clearly one of the centers where you have a challenge with HIV and
AIDS, and you can’t quickly name some of these programs and you


81

sex. But few young people talk about AIDS. Some of the gay youth talk to their
parents about being gay, and their parents are okay with that. But few parents talk
about the AIDS factor. Most of the young women who come to Shades are in
school, and get some information about AIDS in school. Mainly, how to practice
safe sex, and probably about AIDS. The young women that come to Shades still
seem to be lacking assurance about AIDS. I think the participants at Shades of
Lavender feel that the information that they get from Shades of Lavender is good
because it is an AIDS organization. They trust the information from Shades better
than the information at school. In general, there are a lot of youth who don't trust
information from adults, and so they don't trust AIDS information from adults.
They trust information from Shades because it is staffed by young professional

people, and that there are young people involved on the volunteer level.

Young people not having sex is out of the question. This leads us to only

one thing: showing young people how to practice safer sex.

The Federal Government’s attitude towards teens having sex leaves young

people with a lack of funds, programs and opportunities for safer sex education.


107

Mr. SHays. Thank you very much. Your statement includes a lot
more so it will be part of the record. And I thank you for speaking.

Mr. Towns. Thank you very much, Mr. Chairman. Can I just de-
viate for a moment, we have someone in the room I'd like to intro-
duce? We have with us the senior member of the New York State
Assembly; the Assistant Speaker of the Assembly, Assemblyman
Edward Griffith, is with us.

I see you personally in Brooklyn. Nice to have you with us.

Mr. SHays. How many years in the State house?

Mr. GRIFFITH. Twenty-six years.

Mr. Towns. I think he should know his way around, right? No
question about that.

Mr. Suays. It’s wonderful that you’re here.

Mr. GRIFFITH. Thank you, Congressman Shays.

Mr. Suays. If you would like to come here, I’d love to have you
do that, if you have a question you’d like to ask, we’d love to have

you.

Mr. Towns. Thank you so much.

Let me begin by saying to all of you, thank you so much for your
testimony, and I listened very carefully to things that you said. I
want to ask you, do you anticipate, based on your views, your feel-
ings, your work and the kinds of things you're doing, the number
of HIV and AIDS cases in New York City over the next decade will
go down or up? If so, they will go down, I want to know why, if
it will go up, I would like to know why, and let me briefly run
down the line and ask all of you very quickly, I’m going to leave
you out of this, I’m going to make this a New York thing.

Mr. SHays. Don’t worry.

Mr. Towns. I’d like to run down, I'd like to know if you think
it’s going to decrease, why, if you think it’s going to increase, I
would like to know why.

Mr. PepRAZA. Well, unfortunately, I hate to be the pessimistic
point of view, but I think in our community it’s going to go high.

in the Latino and African-American it’s going to go high. I live in

Harlem and there’s hardly any prevention we can identify with.
Everything is written in very hard to understand material, so pre-
vention messages are not given clear to me, they're not done to ad-
dress my needs or my questions, so unfortunately I would say that
we are heading to high levels of HIV.

Ms. Moore. I think I would disagree with higher up. I think
we're going to see a continued rise, particularly in communities of
color, not only because literature is not made in languages which
most people can understand who are not professionals, but also be-
cause we see a decline in funding for prevention services and serv-
ices for people living with HIV and AIDS in communities of color.

In fact, we’ve already seen some rise in AIDS in our commu-
nities, one of our neighborhood hospitals has seen an increase in
AIDS admissions in their hospital. In fact, not only are people liv-
ing with HIV and AIDS going to be affected, but their children will
be as well. Recent studies show that in Brooklyn, there will be the
highest number of orphans, motherless orphans by the year 2000,
16,000 motherless orphans in Brooklyn. So I think the numbers
will continue to go up.


92

Cameron Craig

St. George Project

c/o Interfaith Medical Hospital
555 Prospect Place

Brooklyn, N.Y. 11238

the success or failure rate of the drug regimen. Ultimately,
with maintaining a healthy diet, along with your vitamins
and your medication, you should lead a long a healthy life.
Supportive counseling enables you to come to grips with
the fact that you have an illness, and then expands your
horizons on life. A lot of members of the St. George project
thought they had a death sentence when they were told that
they were HIV positive. Because of supportive counseling,
HIV is now a manageable illness for those members.

{n conclusion, | would like to describe an exercise done
in our focus group at St. George, called the mirror exercise.
Each member was asked to look at themselves in the mirror
and observe the person looking back at them. In the
beginning, most of our clients could not look at themselves
because of the way they appeared. With the help of
supportive counseling, we now can look at our reflection,
and admire the person that we have become. We came
into supportive counseling with a death sentence, but we
leave with a life sentence. Looking in the mirror, we see a
smile reflected.


60

* Compliance or adherence to HIV treatment regimens are crucial in the success of
therapy. Non-compliance or adherence to the demanding requirements for taking the
HIV treatment regimens has played a major role in treatment failures

* Supportive local community or neighborhood centered services for people with HIV
are required for these individuals to survive and to benefit from adequate medical
care and treatment

+ Properly designed and supported needle exchange programs can have a large impact
on the incidence of HIV overall. Particularly because the current trend in the USA is
that a larger proportion than ever of HIV incidence is coming from among individuals
who use IV drugs or individuals who have sex with them.

Clearly New York City is the epicenter for HIV disease in the USA. Amazingly there are
doctors in this city who recommend suboptimal treatment for their patients with HIV. If
this occurs in NYC can you imagine the scope of the problem elsewhere. | hear reports of
doctors in NYC still treating HIV with AZT monotherapy or other suboptimal treatment
tegimens. Treating any individual for primary HIV requires due consideration of many
factors. A doctor must consider planning a regimen that at once is capable of
accomplishing a properly chosen goal of therapy which is usually lowering HIV plasma
viral load to undetectable levels by the available diagnostic tools. In composing this
regimen he or she must also consider future treatment strategies. The uttimate goal is to
lower viral load to an acceptable pre-planned level, to sustain the durability of that
achievement and to plan for future strategies to continue that achievement and maintain
the person's health and survival.

Although there are a good number of doctors in NYC and elsewhere who are capable of
accomplishing this, there are many who have insufficient knowledge to accomplish this. |
Personally know many doctors who know how to treat HIV and have the knowledge to do so
and | applaud the efforts they take to educate themselves and to give good care to their
patients. However, | think the number of such doctors is way exceeded by the number of
those who do not have adequate knowledge about the pathogenesis of HIV, about the drugs
used now and in the future to treat HIV, and how to property design treatment strategies.
In many cases doctors don't or are unable to take the time to adequately assess a patient's
situation and put together an appropriate regimen. Some patients receive a regimen that
is not appropriate for them. When this occurs the patient is more likely to fail that
tegimen more quickly. Due to resistance and cross resistance a person failing such a
first line regimen may not be responsive to additional therapy.

Another reason for treatment failure is non-adherence or non-compliance with the
sometimes very demanding requirements for taking the medication. Non-adherence to a
drug regimen is common among all individuals with any number of medical syndromes.
Non-adherence is a human problem. But, non-adherence is preventable. Measures can be
taken to improve adherence to HIV medications. Only very recently have efforts to
improve adherence been started. Much more widespread effective programs to support
adherence are required. The delay in imlementing adherence or compliance programs has
resulted in the first wave of treatment failure from which some individuals will never
recover. An adherence support mechanism must be at once simple, individually tailored


56

Mr. SHays. Thank you, Ms. Moore.

Mr. Levin.

Mr. LEvIN. I’m glad to be here and have this opportunity to ad-
dress this panel and Congressmen here today about some very im-
portant issues. I particularly want to thank Congressman Towns,
the good Congressman Towns, for inviting me to speak here and
for his support of some of the important issues that I have here
outlined here today by some of the People.

T have to tell you that it is my belief that the important informa-
tion you can get will come from the community people at this
panel. The Government people have something to say, ut I’m not
quite sure they can say the things in the way that the community
people here can say it and I don’t think they did. I’m not sure the
addressed some of your questions regarding the importance of ad-

erence.

Let me tell you that in line with what Jairo said, education,
treatment education, equals access and compliance equals treat-
ment access and equals treatment compliance and there is not ade-
quate treatment education in the minority communities. Let me
tell you that I, my organization for which I’m the executive director
is a member of the ADAP working group. I’m sure you're familiar
with our workings in Washington, and I myself am a treatment
writer, we ublish a newsletter and have a web site on the Internet
where we disseminate treatment information all over the world and
we have highly scientific treatment information which we dissemi-
nate to doctors and to patients, and I interact with leaders from
the communities in all the different cities in the United States,
mostly leaders in the gay white male community.

I live in Brooklyn, my organization is in lower Manhattan, and
due to the good work of the AIDS Institute, we are one of the orga-
nizations that is funded to do treatment education in Brooklyn, and
I think Jairo mentioned this, and so we bring treatment education
due to that funding to seven or eight ASO’s in Brooklyn, some of
them are here today, Life Force, Brooklyn AIDS Task Force, Mu-
sica Against Drugs, as Congresswoman Velazquez mentioned, and
some of the biggest organizations in Brooklyn.

I want to tell you I am stunned, I’ve been bringing treatment
education to Brooklyn since about a year ago. I am stunned in the
difference in knowledge of treatment education over that short
bridge between Manhattan and Brooklyn. There is a tremendous
gap and I’m not sure I believe the city government when they say
they are putting enough funding into treatment education for mi-
nority populations in Brooklyn. Lack of treatment education equals
lack of access, because people don’t know what the treatments are,
they don’t know what their choices are, they don’t know if their
doctor is leading them astray or not and I will mention again to
that and they don’t know what future strategies will be, and they
don’t know why they should be compliant.

Education frequently helps with compliance. It’s not alone mak-
ing somebody compliant, but it helps, and with regards to adher-
ence, we need proper support for adherence programs. Adherence
is maybe the biggest, non-adherence is maybe the biggest factor for
treatment failure in the United States today. So just to say that
ASO’s in the outer boroughs are doing their best as one of the gov-


18

Let me turn to the next important question: Are these programs working? We have
recently found the most definitive answer yet to this question. and it seems to be a resounding
“yes.” Our surveillance data. just analyzed through 1997, show a dramatic decrease in the rate of
deaths due to AIDS. (See Attachment A) Over the two years since protease inhibitors first
became available. AIDS deaths in New York City dropped 63%. from approximately 7.046 in
1995 to approximately 2.577 in 1997. We have not recorded so few AIDS deaths in New York
City since 1986. when the epidemic was much more limited than it is today.

Equally heartening is the fact that these declines are seen across all population groups. as
reflected in Attachment 4. There were declines in deaths among men and women in the
Hispanic, black. white and Asian race/ethnicity groupings. although. as was the case last year.
declines were most dramatic in men, Male deaths declined 71% overall and ranged from 59% for
blacks to 72% for Hispanics. and 78% for whites and 83% for Asians. Female deaths declined
by 63% overall and ranged from 39% for blacks to 66% for Hispanics and 73% for whites
Overall, AIDS remains the third leading cause of death in New York City. and remains the
leading cause of death in those aged 1 to 14 and 25 to 49. While more analysis is necessary.
these data certainly tell us that broad access to new anti-retroviral combination therapies is
making a dramatic difference in life spans.

The clients who are served through our Ryan White Title I programs also bear out the fact
that the programs are reaching predominantly minority populations. who are in greatest need of
these services. Title I's health programs (excluding ADAP and ADAP Plus) had a total

enrollment of 12.976 in calendar year 1997. During the last program year. which ended in


47
York City receives for AIDS services. I am also a person living with

You have heard a lot of data on the impact of the new treatments
are having on the epidemic in New York City. I wish to talk to you
about the need to further increase access to those treatments, espe-
cially for minority populations, and the need for supportive services
to ensure that people receive the maximum benefit from those
treatments.

Since the time the new protease inhibitors became available,
New York City’s HIV Planning Council has Sought ways to create
access to these new HIV infected individuals. One of the biggest
barriers to access is the lack of education available to people with
HIV about the medications and about the treatment. Ryan White
funds are vital to help the people learn about, also especially for
minority communities, we are very suspicious of the medical estab-
lishment and western medication, about people helping learn about.
the benefits of the medications.

People also need to help to understand their treatment options
and how to adhere to therapy. While this year, the HIV Planning
Council has allocated a substantial portion of our grant for treat-
ment education and support programs, it is not nearly enough. Be-
cause of the huge demands for other, immediate life saving services
such as food programs, housing and counseling, we could not nearly
fulfill the demand for treatment education and support. The edu-
cation and support is essential for allowing people to gain access
to these new and to comply with their treatments.

ADAP program has also been vital to making life saving treat-
ment available to HIV infected people, regardless of their ability to
pay. Congress must greatly increase the amount of funds for ADAP
in order to meet the challenge of allowing poor people with HIV
greater access to both new treatment and older treatments, but it’s
still vital therapies, but because of the new anti-retroviral treat-
ments, many people with HIV hope and we will live longer and we
will require a host of other HIV related medications.

For example, I am now taking gancyclovir to treat a deadly HIV
related infection called CMV. This medication is extremely costly
and without ADAP I could never pay for it and maybe I would not
be able to appear before you here today.

We are also very concerned about the impact in the welfare and
immigration laws. Many of New York City’s AIDS cases are among
immigrants. Many immigrants have lost their benefits and are ei-
ther relying on Ryan White programs or are going without treat-
ment. It is important both to the immigrant community living with
HIV and to the public sector that they are able to get treatment
and services at an early stage of HIV infection, not a later stage
in an emergency care setting.

Finally, it is vital that HIV services are available locally in every
borough and every neighborhood of New York City, and that re-
sources need to be allocated to where we need. People have the
right to get treatment and services in our own communities. For
us, people living with AIDS, the need to travel out of our area be-
comes more difficult due to our illness. It means taking several
trains, the rush hours or even going to different services, agencies


51

Testi 5

Friday, February 20, 1998
Brooklyn Borough Hall
209 Joralemon Street. Brooklyn, NY

Presented by: Antonne Moore, Coordinator
East New York/Brownsville HIV CARE Network

Congressman Shays and Congressman Towns, | would like to thank you for the
opportunity to testify on HIV/AIDS in Brooklyn. As you know, the issue of AIDS in New
York City, and Brooklyn in particular, is much more complex than can fully be discussed
in this forum. Nevertheless, ! am honored to be able to discuss some key issues
related to accessing HIV/AIDS treatment and services in Brooklyn

As Coordinator of the East New York/Brownsville HIV CARE Network - a Ryan White
Title 11 Consortium of more than 90 HIV providers, people living with HIV/AIDS and
community members - my purpose is to facilitate the development of plans to address
service gaps and increase access to services in my community. East New
York/Brownsville, Brooklyn is identified as having some of the highest needs in the
entire City. These communities combined represent 11% of the total Brooklyn
population, but 19% of those living with AIDS. A study conducted by the Federation of
Protestant Welfare Agencies estimated that by the year 2,000, there will be 16,000
motherless orphans in Brooklyn alone, the highest of any other borough. In 1995, the
former Health Services Agency estimated that one in thirty-seven individuals in Central
Brooklyn is HIV positive. The NYC AIDS Surveillance Report shows that East New
York has the highest number of women living with AIDS in Brooklyn.

Yet, despite the clear need, Brooklyn and communities of color, continue to be the most
underserved and underfunded areas in New York City. In fact, an analysis conducted
by the "718" AIDS Coalition showed that, though the epidemic itself has shifted
dramatically from Lower Manhattan to the outerboroughs - with 70% of all new AIDS.
cases - the majority of AIDS related funding continues to focus on Manhattan-based
agencies. This is, in part, due to the ways in which service needs are assessed. But


80

specifically for lesbians. It isa place that feels safe. It is confidential. It is a
safe place for young women to talk to other young women without their business

being spilled out into the street.

AS a youth educator, I think that young people are naive. They know that
the disease is there, but there is a lack of specific information about sex and AIDS.
They know that AIDS is there, but they either don't know to practice safer sex, or
they still choose not to. We need more education aimed towards youth, and more
AIDS education geared towards youth to show them the consequences of not
practicing safer sex. Many young people think that AIDS is over because it is not
in the media anymore. You can blame whoever you want to, but if you want to
live a long, healthy life, you have to go out and seek information. This is why
AIDS outreach for youth is important. Most of the AIDS outreach - the pamphlets
and the flyers - are mostly found in gay youth organizations, or gay organizations.
Thave been to a few straight youth organizations, but they do not have the same

level of outreach as they gay youth organizations.

Some of the participants in Shades’ youth group talk to their parents about


142

As we broaden the collection of data in the information net, we see an emerging
population: young people infected with HIV since birth. As we speak, community
AIDS service providers are just beginning to see a generation of teenagers come of age
who were born HIV positive. Some of the teenagers know that they have HIV, but
some do not. Many teens find out they are HIV positive when they themselves become
pregnant, or when their newborn infant is tested. While there is an effort made to trace
these teen-age moms’ sexual partners to identity how they got infected, many of them
in fact, have been HIV positive since birth, and have never been told their diagnosis.
Many of them are now having their own children, who are also HIV positive.

It is important to address the three separate service sectors of congenitally
infected young people, and to recognize their differences in terms of health and health
services needs. The oldest cohort is adolescents who are currently 15-20 years of age.
‘These young people have been infected for almost 20 years, and have had medical
intervention only recently, a maximum of perhaps 10 years. These adolescents were not
‘expected to live this long. Thus, they have a variety of serious educational, social and
physica! limitations because the effects of their illness and the lack of medical
interventions. Also, there was an underlying presumption by their parents that their
children would die of AIDS before they would become teenagers. To further
complicate these young peoples lives, many of their parents died of AIDS and the
surviving guardians also never expected these young people to live long lives. These
young people, some of whom may still not know that they are HIV positive, are now of
child-bearing years, and many are probably at high risk of becoming teen parents.

The second cohort is young people who are now 9-15 years of age. These
children have received more medical interventions, and are more educationally, socially
and health-wise capable because of the emerging therapies of the last 10 years. These
children are living with a changing reality, although they were not expected to live
either when they were born, Many of these children are now sexually active. Again,
some of them know they are HIV positive, some do not. Safer sex education for this
group is critical! Not only to protect the health of other teens who are not yet infected,
but to protect the lives of the unborn.

Page 3


135

Page 5, Testimony

expertise in HIV-related issues has been well documented. Two recent studies? conclude
that changes in welfare, Medicaid, social security, immigration and health care delivery
systems have created an emergency need increased client advocacy/legal services for
people living with HIV/AIDS. A report prepared for the NYC HIV Health and Human
Services Planning Council entitled The Changing Environment states: “there is an
immediate need for increased...client advocacy for the Majority of Title | recipients"(p.104).
Table 8 of The Changing Environment projects that 26,640 - 35,880 HIV+ clients will
need client advocacy services in 1998 — an increase of over 7 times the number of clients
(4132) in 1996.

The kinds of legal issues faced by people living with HIV are the same as any poor
family might face in a crisis, except for HIV/AIDS phobia and discrimination. Because of
HIV stigma and discrimination, skilled attorneys with experience in HIV discrimination are
necessary to handle these matters competently. Parents living with HIV/AIDS are
encouraged to make legal custodial arrangements for their children in the event of chronic
debilitation, long-term hospitalization or death, which require the assistance of an attorney.
New guardians or caretakers of AIDS orphans often have difficulty obtaining benefits and
services for these children, and need a skilled advocate. Parents living with HIV are
sometimes threatened by child welfare agencies with removal of the children from their
homes where neglect due to illness is suspected, or based on a belief that HIV is
contagious through touch.

Often these cases are complicated and labor intensive: a few examples from our
practice —

@HIV+ children who are orphaned and live with a relative caretaker who speaks
no English, and does not have legal custody and the legal authority to consent to
treatment;

@AIDS orphans residing in public housing with no adult in residence facing eviction
and loss of benefits unless the 17 year old is found competent by Family Court to become

“NIGH NEEDS INDEX FOR RYAN WITITE TITLE I PRIORITY SERVICES


13

Statement of
Dr. Rosa Gil.
Special Advisor to the Mayor on Health Policy.
New York City Office of the Mayor
tothe
Subcommittee on Human Resources of the
US. House of Representatives
Committee on Government Reform and Oversight

February 20. 1998,

Inuoduction

Good morning. Thank you for the opportunity to address this Subcommittee on
important developments relating to new HIV therapies and the impact they are having on HIV-
infected individuals in New York City. My name is Dr. Rosa Gil, 1 am the Special Advisor to
the Mayor on Health Policy for New York City and Director of the Mayor's Office of Health
Services, In my testimony this morning. | will provide the Subcommittee with data on the
dramatic impact that recent HIV treatment developments are having on the epidemic in New
York City. with a particular emphasis on access to those treatments for minority populations. |
will then discuss some of the implications of these treatments for the evolving nature of the
disease and the need for medical and supportive services. and our recommendations for steps that
the federal government could take to enhance access to treatment for all HIV-infected residents
of New York City.

‘New York City remains the epicenter of the AIDS epidemic in the United States

Approximately 16% of U.S. AIDS cases have been reported from New York City, although it has


187

TESTIMONY TO THE SUBCOMMITTEE ON HUMAN RESOURCES

OF THE
U.S. HOUSE OF REPRESENTATIVES
COMMITTEE ON GOVERNMENT REFORM AND OVERSIGHT

Presented by: Gabrielle Kersaint, Rxecutive Director
Haklan Women's Progran
464-46 Bergen Street
Brooipa, NY, 11217
18) 399-0200

Congressman Shays and Congressman Towns, thank you for the opportunity to share with you
several critical issues chat will severely impact the needs of the Haitian, Caribbean, African
French Speaking, and Afrisan American communties infected/affected with HIV/AIDS that
reside in Brooklyn. My name is Gabrielle Kersaint, Executive Director of the Haitian Women's
Program (HIWP) and I will begin by presenting information about the Haitian Women's Program
and the decision made by the Mayors Office and the HIV Planning Council to cut funding for
HWP's Case Management Services previously funded by Ryan White Title I.

1. Problem Statement:
Haitian Women's Program, (HWP), a not for profit commmnity based organization was
established in 1981. HWP currently provides ‘case management to a total of 140

‘Woren's Program, and Hairian Community Health, Information and Referral Program, (Lakou
‘Lakay). HWP was the largest of these Haitian funded programs employing four case managers
and a social worker, In addition, HWP is the only Haitian agency that also has other related
AIDS services program such as Housing, Education and Tuberculosis screening to couiplement
its existing case management services. Ryan White (untingconstited one-third of our agency's
budget. The recent discontinuation of Ryan White funding will not permit HWP to adequately
provide the clients with the following services:

© Permanent housing search and placement

© Assistance with applying for medical coverage

e Assistance with immigrant issues

© Escorting clients to medical appointments

a

mo7x. 119 958 4542 03-20-98 05:15PM PO08 #37


Page &
Brooklyn Testimony
2/20/98

Today, | have testified before you as a Coordinator - a person paid to do this work. But
lam also here as a woman of color and a resident of a community devastated by the
combined diseases of poverty, HIV and substance use. | am also a person who is
proud to be a resident of Brooklyn and who is part of a Network and PLWHA Advisory
Board full of committed and knowledgeable individuals who have some pretty good
ideas about how to improve the condition of people living with HIV/AIDS. One of the
ways is to implement innovative methods of increasing access to needed services

As such, on behalf of the East New York/Brownsville HIV CARE Network, | humbly
request that when you Congressman Shays and Congressman Towns, return to your
colleagues in the Subcommittee that you encourage increasing the amount of money
allocated for Ryan White and HIV/AIDS prevention, ensuring that communities with the
highest need also have the greatest access to resources. Additionally, ensuring that
the Secretary of Health and Human Services maintains the authority to lift the ban on

needle exchange

Thank you ence again for allowing me to address you on these very important issues
which will impact people living with and affected by HIV/AIDS in Brooklyn


2

cern and activism on behalf of people infected and affected by HIV
and AIDS brings us here. We are grateful for his work and for the
opportunity to listen and to learn from today’s witnesses.

‘he AIDS virus is a determined, clever foe and as it mutates so
does the reach and scope of the epidemic. Positive news about
death rates should not lull us into any false sense of accomplish-
ment or complacency. Demanding treatment regiments that are
prolonging the lives of HIV-infected persons are costly and making
those treatments available presents a profound challenge to cur-
rent care delivery systems.

So we come here today to ask providers, advocates and commu-
nity organizations how to extend the continuing care to all who
need it. The testimony of our witnesses today will help us arrive
at findings and recommendations to improve Federal AIDS policy.

At this time Id like to ask for my co-chairman, Mr. Towns, who
would like to comment.

Mr. Towns. Thank you very much, Congressman Shays. Let me
begin by saying I appreciate the work that you're doing in this area
as well and let me begin by welcoming you to the borough of Brook-
lyn. If it was a city, it would be the fourth largest city in the
United States, so that’s why we asked the deputy borough presi-
dent of Brooklyn, Jeannette Gadson, to welcome you, because
you're in Brooklyn and we do it right in Brooklyn.

The Centers for Disease Control and Prevention estimates that
between 650,000 and 900,000 Americans are infected with HIV.
The vast majority of the new infections occurred in people under
the age of 25. About half of these new infections were in women.
People of color were 40 percent of the AIDS patients in the years
1981 to 1987, but they accounted for 57 percent of cases last year.

HIV infection in America is rapidly becoming the disease of the
young, poor, non-white, economically disadvantaged who do not

ve private health insurance. However, amidst this gloom there
is some hope. Medicine has finally started to catch up to the dis-
ease and can now offer treatments that may substantially lengthen
life and in some cases restore health. About 200,000 people, ap-
proximately one quarter of the people in the United States infected
with HIV, are now in triple therapy. AIDS deaths across the
United States dropped 44 percent in the first half of last year. In
New York City, the AIDS death rate fell by 48 percent, but we still
have a long, long way to go.

To date, the most important development in AIDS treatment has
been the arrival of protease inhibitors, a new class of drugs that
are generally used in a three-drug combination with other antiviral
medications. Triple therapy can slow down viral replication to the
point where the virus does not appear in the body. However, triple
therapy costs up to $12,000 a year and requires a strict and accu-
rate regimen of medications.

In addition to the costs, bringing medical care to poor people or
People, the new triple therapies may be revealing the weaknesses
and deficiencies in the complex mix of public and non-profit health
care services used by people without health insurance. Weaving
this network into a system that can bring medical advances to this
population may be the greatest achievement in the battle against


12

their high school equivalency. At several of the groups, clothing, food, household goods
and a nutritious meal are provided. This is often the participants only well balanced meal
of the week.

As its name implies, The Evergreen Network, Inc. sceks to send a message of hope and
connection to those who know only despair and isolation as a result of HIV/ADS.
People served by Evergreen know that they are not alone. We strive to offer information,
hope and relief from unremitting isolation, one of the diseases most devastating side
effects. A non-judgmental, caring environment is offered to help relieve the stigma of
AIDS, as we attempt to bear the heavy burden the disease imposes together. It is our
hope that ongoing weekly, support groups, tailored to the peeds of individuals touched in
diverse ways by the disease will provide renewed strength and hope.


AIDS Mortality
page two

Dr. Mojica explained, “This is the fewest number of people to have died of AIDS in
this city in over a decade, since 1985. The obvious question is ‘Why?’ While this
new data cannot give us the answer to that question, it seems equally obvious
that this is directly connected to broad access to new antiviral combination
therapies, including protease inhibitors, made possible by the AIDS care
infrastructure we have developed in New York with the help of Ryan White
funding.”

In Chicago, DOH Assistant Commissioner for Disease Intervention Research Dr.
Mary Ann Chiasson, presented the Health Department's findings at the Sth
Conference on Retroviruses and Opportunistic Infections and answered
questions at a press conference held there. Among the findings she presented
were the following.

. There were declines in death in every age grouping.

. There were declines in deaths among both men and women in the
Hispanic, black, white and Asian race/ethnicity groupings, although, as.
was the case last year, the declines were most dramatic in men.

. Male deaths declined by 71% overall and ranged from 65% for blacks to
72% for Hispanics, 78% for whites and 83% for Asians.

. Female deaths declined by 63% overall and ranged from 59% for blacks to
66% for Hispanics and 73% for whites.

. Overall, however, AIDS remains the third leading cause of death in NYC,
down from second, and remains the | ig cause of death in those 1-14
and those 25-49.

On Thursday at the conference, Dr. Atlono Reggy will present the results of a
case-controlled study conducted in NYC which examined the relationship
between deaths and antiviral therapies.

TABLE ATTACHED — SEE PAGE THREE

#04


10

. Infected women are being impacted with the new “welfare to work” regulations, For
many women. their partners have already died and they are the sole support of their
families. Even with the new medications, these women's health systems are more
vulnerable to general infections and complications resulting in absenteeism, and
subsequently are at greater risk for job loss. Under the current guidelines, after 21
months they will then be unable to access public assistance again. In addition to
fragile/impaired health systems, these clients often experience a general malise,
exhibiting chronic tiredness, nauscousness and overall weakness as side effects from
the medicatioas. These maladies cause them to be poo: candidates for good work
attendance.

3. Medical coverage is a critical need for this population. If these clients are able

to return,to work they will need guaranteed low cost medical coverage. Why is the
it
Medical insurance companies need to accept part of the coverage for these clients,
The government needs to use its buying power to buy low cost medical insurance
and thea partially subsidize the coverage to make it readily available to this
population.

4. Some subtle drug failure is now apparent with the new treatment medications.
Tam seeing some patients who are exhibiting neuro-psychiatric symptoms although
they are baving a very good physical response to the medications. There appears to
be chronic psychiatric impairment with specific neurological symptomatology such as
loss of decision-making ability, loss of acuity in cognitive function and memory
impairment. Case managers are reporting more mental bealth issues for some clients
who have @ good phy'sical response to the drugs, but continue to show psychological
symptoms. The need for mental health services is acute with special need for long
term mental health care for this chronic condition.

5. As people with this disease live longer, their fragile health system will face the
additional burden of the normal health care issues inherent in aging. We need to see
ahead and have a vision to propose potential future responses for these challenges.

6. For all of :hese concerns we need a more encompassing network of care for both the
infected and affected people touched by this disease.

In response to these concerns I would like to share the model of service provision that
Evergreen Network, Ine. has developed. Our program for affected children was the first
in the country and bas become a model for Yale Child Center's program as well as for
many other agencies. We provide case management for affected children as well as a
weekly support group that incorporates the use of therapists and college student
volunteers to work with the children in an often one-to-one ratio to provide therapy and
peer models. Each child's birday is celebrated 99 weil 8 report cards and seasooal
holidays. Extensive use of resilieccy factors has been incorporated into the program. In
addition, there is a “Big Friend, Little Friend Program with other college students for |


63

The Federal government through Ryan White Title’s | or Il should mandate that each state
spend a specified percentage of funding on direct consumer or patient education. My
opinion is that this type of education is key to an individual empowering themselves to
make sure they receive the best treatment possible. Additionally, all too frequently
patients don't trust treatment advise from their doctors but may be more receptive to
information from an organization such as NATAP.

We at NATAP receive continuing requests from hospitals, doctors and AIDS service
organizations to provide them with educational programs. The only thing preventing me
from conducting more educational efforts are limited financial resources. Support for
such efforts from Congress would be helpful.

ADAP- NATAP is a member of the ADAP Working Group located in Washington DC. | am
the representative for NATAP in that group. | think you may be well acquainted with the
Working Group's goals and activities. Without adequate funding for all state ADAP
programs, many individuals get no treatment or receive suboptimal treatment. It is
unconscionable that the PHS and NIH would document the standard of care for HIV and that
the state ADAP programs would not be required and duly funded to meet these standards.
‘You have probably heard about the states where there are waiting lists to receive drugs,
where program eligibility criteria are prohibitively restrictive, and where their drug
formularies are too limited. In some states ADAP programs have closed and reopened
because of inadequate funding.

It is unconscionable that such a situation is still ongoing 2 years after the FDA approval
and availability of protease inhibitors. Granted, the situation has improved as Congress
and the Administration have supported significant funding increases over recent years.
But, everyone with HIV who needs treatment should have access to such treatment. The
hopes of stemming the tide of this epidemic requires proper treatment. Over the course
of the last 10-13 years, the Federal government has spent hundreds of millions of
dollars for research for drugs. Now that we have those drugs, it is bewildering to me
why access to them is limited.

Continued Support for Small Community Based Service Organizations. The
organizations, such as the ones NATAP visits to deliver our educational programs are
meeting and fighting HIV on the front lines of the battle. They are providing irreplacable
services to the people with HIV: primary medical care, case management services such
as providing resources for housing, food, treatment education, etc. All the successes and
problems faced in the HIV crises are present in the everyday affairs of these
organizations. Additional and continued support for these organizations is crucial. Some
‘may tell you that the sickness and death Is waning because of the new therapies. But, the
prevalence of incidence for HIV is switching to minority communities. In these
‘communities, problems continue unabated: inadequate treatment information and access,
inadequate medical care, higher rates of non-adherence, inadequate sustance abuse
services. Funding increases are required to assist these organizations in coping and
making progress. As mentioned earlier, NATAP provides treatment education to such
organizations. Without continued funding we will have to stop providing these services.
But these are only 7 organizations. IN New York City, there are many more organizations
not receiving any the type of trainings that we deliver.



20

abating by the end of 1997. By September 1997. whites and Hispanics reported almost identical
levels of combination therapies use at 71°o and 70%. respectively. Utilization by blacks. while
still lower. had risen to 53°, almost double that of the prior period. (See Attachment F. p.2)

Our data clearly show that the programs we have in place in New York City. largely
thanks to federal support through the Medicaid and Ryan White programs. have done an effective
job in delivering new HIV anti-retroviral combination therapies to a broad cross-section of HIV-
infected individuals. As research continues and treatment guidelines evolve. we are in a position

-- provided we continue to receive adequate funding -- to make life-saving. state-of-the-art
treatment available to HIV-infected New Yorkers, We look forward to a continuing partnership
with Congress and the federal health agencies in delivering high-quality health care to the

growing numbers of New Yorkers who continue to need it.

Challenges of new treatments to HIV service systems

Now. I will comment on the implications that these treatment developments have for the
HIV service system in New York City. and make some recommendations on federal actions that
would help us in New York to do a better job of reaching everyone with HIV infection with the
medical care and supportive services they need to maintain their health.

I cited the dramatic decrease in AIDS deaths that we have experienced in New York City
cover the past two years. This is very good news indeed. but it raises one obvious implication:
Many more people will be living with HIV infection and AIDS in New York City in the coming

years. and they will continue to need servi

's in order to remain as healthy as possible. This will


37

say that if we could finish up here in time, that we maybe could
allow 15 minutes for people from the audience. I know that’s not
the standard procedure, but I think that maybe out of this might
come some sort of burning kind of question or burning kind of com-
ment that they would like to make and that if we could do that,
then I would certainly think that we would be able to cover a lot
more. I know we have time constraints, because you have agreed
to tour some facilities, things of that nature——

Mr. Suays. That’s all right. I'll tell this to the audience, we're
going to proceed with this panel. On the second panel I think we
may have five witnesses, seven, so that will take a while. What
we'll do is try to spend 15 minutes to a half hour. I’ll ask if there
is anyone who wants to speak at the end. You won’t be sworn in,
since you are not part of the panel, but we would like your com-
ments, they will be on the transcript, and depending on the amount
of people who want to speak, we’ll determine how long, whether it’s
1 minute, or 2 minutes, or 3, depending on the number who want
to speak.

So those in the audience here who hear anything they agree with
or disagree, whatever they want to emphasize, you will have a
short opportunity in the framework to express your opinion on the
record. We will be strict in the period of time. What that tells me
is we'll be strict with our second panel in terms of the rule on that.

That’s an excellent suggestion. We can agree with that. Why
didn’t I think of that? OK, you have the floor, sir.

Mr. TOWNS: Thank ener, much, Mr. Chairman. a

t_ me begin by tl it oth of you for coming, and we appre-
ciate the kind of work that you do. I had one question here that
was left by Nydia Velazquez and then another one, that both of us
had the same question, so I will ask it in her name and my name,
the first one.

Often we find that HIV, this is one that is offered by Congress-
woman Velazquez and myself. Often we find that HIV/AIDS grants
are awarded to service providers that do not understand the cul-
ture or do not have the experience in the areas that they are trying
to serve. How can we insure that groups from the community with
an established knowledge and tremendous track record and history
cf providing services to the community are the ones that receive

e grants?

Let me just be very specific, because I don’t mean to throw
curves, I believe in going right straight. You know, we have this
concept in New York, citywide programs. Now, in almost every in-
stance, and I don’t have anything against Manhattan, I go re
every week, almost every instance, the citywide program is based
in Manhattan, and then when I look at problems that we have,
Brooklyn is No. 1.

So it seems to me if there’s going to be a citywide program, and
Tm not discouraging citywide programs, then the citywide pro-
grams should be based in Brooklyn, that’s No. 1.

And No. 2, let me tell you why I say that, because I didn’t just
go to bed and then wake up—lI used to be the deputy borough
president in Brooklyn. That’s when we used to have the Board of

stimate.

Mr. Suays. Did you have hair, then?


57

ernment officials speaking today to address adherence, that’s not
good enough. We need programs, we need money to do the pro-
grams and you need good people setting up the program and there
is none of that going around today in New York City in Brooklyn
that I know of for sure, and in fact throughout the city.

One of the—we bring in seven sessions to each organization over
6 months. One of the sessions we will be getting to is adherence
and we will do our best to discuss and work with agencies on im-
proving adherence for their clients, but it’s a very complicated issue
that needs to be addressed comprehensively. Let me try to run
through some of my points today.

Mr. SHays. Let me say, you’ve got about 6 minutes total. You’ve
done such a good job not even looking at your statement. You can
feel free to paraphrase; it will be helpful.

Mr. LEvIN. OK. Some important points. First of all, primary care,
too often, for HIV does not reach the appropriate standard of care,
doctors in Manhattan, in the big clinics may know more about how
to use these treatments, but I tell you that the doctors in Brooklyn
do not, and as a result, we need better treatment education, not
just for the patients, because it’s the history of HIV is that the pa-
tients are the ones who are the activists or caused all the changes
do better in educating themselves and treating themselves. They
need treatment education, but I tell you that the doctors need
treatment education.

The triple drug therapy is going by the wayside. Within a year
we're going to have double protease therapies, we’ll have four drug
therapies. I think a lot of doctors in Brooklyn don’t know how to
adequately use triple drug therapy, which is why we've had a wave
of resistance in the last year and we'll probably have more resist-

ance.

Let me also say that you need to fully fund ADAP. The ADAP
working group will be meeting with you in Washington over the
course of the next several months. I know we've been visiting with
he over the last few months. We are very thankful that you have

en increasing funding several hundred million dollars in the last
several years, that’s terrific, but there are le falling in between
the cracks because it’s not fully funded. I tell you after spending
hundreds of millions of dollars to help develop these drugs through
the NIH, it’s amazing to me that Congress doesn’t want to fully
fund access to everybody. I just find that unbelievable.

Let me say that needle exchange is extremely important. I am
HIV positive. I contracted HIV 13 years ago through using needles.
I will tell you that if clean needles were available then, I don’t
think I would have HIV and it would not make somebody use
drugs who never used drugs, because they can get a clean needle.
Tt will not increase drug abuse.

Let me just finally say that adequate funding really needs to
go—I am active with organizations all over the country, the bigger
ones mostly and the smaller ones. APLA in Los Angeles, GMHC in
New York City, San Francisco AIDS Foundation because of my
treatment education work, I work with all of them, and I will tell
you that as Jairo said in my work and going into all the little orga-
nizations in the Borough ot Brooklyn, there are many, many people
who never cross the bridge into Manhattan for any services. They


23

to date. to be converted into a message that individuals at risk no longer need to take precautions.

Individual prevention efforts. across all communities. remain just as vital as ever.

Recommendations for federal action

L would like to make three overall recommendations for what the federal government can
do to support our efforts in New York City. The first has to do with Ryan White CARE Act
funding. Let me hasten to say that both Congress and the Health Resources and Services
Administration have. to date, been extremely supportive of our work: this year; our Title |
funding increased to $95 million. from $92 million last year. This has enabled us to create the
broad network of services that is delivering new treatments to HIV-infected individuals across
New York City. But our ability to continue to do that will depend on two things: being able to
pay for the drugs themselves. and having the service infrastructure to deliver them and support
people in taking them.

In his FY 1999 budget. President Clinton has proposed a substantial increase in funding
for the ADAP program. This is extremely important to us. because ADAP allows us to provide
medication to thousands of uninsured individuals who otherwise could not afford them. But at
the same time. the President has proposed only a $25 million, or 5 percent, increase in Ryan
White Title funding. Our service infrastructure is supported by Title I funds. In addition. Title
I enables us to make substantial contributions to the ADAP and ADAP Plus programs which are
so critical to our HIV service delivery system. I would urge the Congress to support
appropriations for ADAP at least at the level proposed by the President. but also to look at
increases in Title I funding that will enable us to expand our service delivery systems and

I


144

In conclusion, I offer these comments to provoke thoughtful reflection and to
help you stay on track. I recognize that congress members are called upon to quickly
become experts in many areas, a daunting task. I have been building expertise for
almost 15 years in identifying what is missing in service systems and in personal
empowerment issues. I hope you will use the logic of my testimony to think through
the legislative issues affecting HIV and AIDS.

Page 5


Cameron Craig

St. George Project

c/o interfaith Medical Hospital
555 Prospect Place

Brooklyn, N.Y. 11238

support group. Excluding the community action counsel,
which is administered entirely by clients, each group is
facilitated by a medical staff member of St. George. The
commitment and work of these professional members
enable us as clients to resolve our issues about HIV/AIDS.

My therapist recommended that | go to St. George in
order to meet people like myself who were infected with the
virus. This is necessary so that isolation does not become
routine. In being with other members, you begin to enjoy
life again, and you see things clearer. This sense of
validation helped to prioritize my life. | was able to clear
away non-essential anxieties (we call it something else at
the St. George Project, but | won’t use the cow-chips word
at a congressional hearing), and focus on making better
choices about my health.

In this way, the supportive counseling program at St.
George enables members to live healthier lives. In fact,
supportive counseling becomes a type of medical treatment
that can lead, as did in my case, to medically significant

6


44

Mr. HANSELL. I have one issue for your list, that is, as I think
Dr. Gil and Cruz mentioned, how we aggressively, address AIDS
prevention programs in an environment t there’s a perception,

although a false Perce tion, that the epidemic is receding.
Mr. Suays. I he: the word “prevention,” but what was the
word before that?

Mr. HANSELL. Aggressive prevention.

Mr. Suays. I have not heard of the whole formula issue, but it’s
one that stares us in the face.

Dr. Git. Mr. Chairman, if I may, for a second, just to elaborate
further on how the formula and financing of these services will
change dramatically. In a fee for service environment as well as
three 4 years ago, if you were to lose that number of beds in hos-
pitals in New York City that were used for patients with AIDS who
were admitted and you look at those number of beds both in the
public system as well as the voluntary hospital, you will see a re-
duction in the number of individuals that need to be admitted into
a bed in a hospital, because it was a driven hospital system, a driv-
en financial system to support at that stage in the epidemic.

Thank God we have these new drugs, but in doing so, we shifted
the financing and the formulas have to be for outpatient, for hous-
ing, for job development, for case management, so that formula
needs to be looked at very carefully. Because we all were funding
a hospital system base as opposed to an outpatient driven system.

Mr. SHays. Let me ask one more question, and that is, with new
treatments where pacrle are maintained with HIV but not AIDS,
I mean, they are but they are still healthy, does that suggest
any new protocol in terms of notification or disclosure of who might
be HIV? And is the health community debating this issue dif-
ferently because of this? Do you understand my question?

Mr. SELL. Yes. I think both the State and the city have had
partner notification programs in place.

Mr. Suays. What is t!

Mr. HANSELL. That is notifying the partners of the individuals
who test HIV positive on a voluntary basis. I think the implication
of what you’re saying, which is important, as People are living
longer, the place where that needs to happen is in the health care
setting, because people are going to be having more ongoing rela-
tionship with their health care providers, and so incorporating
partner notification into ongoing health care delivery is going to be
a much more important issue.

Mr. SHays. I don’t understand how you would enforce a partner
notification. How does that work? Then we're going to try to get on
the next panel. How does it work?

Dr. GiL. [’'m just going to ask Commissioner Hansell to explain
how we do the identification right now for AIDS and that can serve
as a model for the HIV.

Mr. SuHays. So it’s notification of AIDS?

Mr. HANSELL. What we do is actually for anyone who is tested
for HIV within our testing programs, when they return for their re-
sults and the result is positive, they sit down with a counselor and
the counselor speaks to them about the importance of notifying
their partners, encourages them to do it directly or if they need as-
sistance in doing it, we have a program of public health advisors


85

Cameron Craig

St. George Project

c/o Interfaith Medical Hospital
555 Prospect Place

Brooklyn, N.Y. 11238

Testimony for the Subcommittee on Human Resources
Brooklyn Borough Hall
February 20, 1998

Congressman Shays, Congressman Towns, my name
is Cameron Craig, and | am here today to give testimony
about the role of supportive counseling in the treatment of
HIV positive people.

| want to tell you today about the some of the reasons |
believe my health has benefited from participating in a
group counseling program for HIV positive people. | am
also representing the St. George Project at Interfaith
Medical Hospital, and | will talk about the impact of the St.
George project on my health as well.

| was diagnosed with the virus in September of 1996.
Presently, the virus is undetectable in my blood, and | have
a t-cell count of 500, which is up from 123 at the time | was
hospitalized and diagnosed with HIV.

1


62

standards. Doctors treating HIV should be required to have a certain board certification
that they are specialists in that field.

Physicians and patients need improved education about treating HIV. Other professionals
who are involved in the care of PWAs should also receive such education--nurses, home
health care attendents, social workers, case managers, etc. We need broad based
comprehensive programs designed to reach and well educate all HIV treating physicians
and patients. it is with the knowledge obtained through such programs that a patient can
participate in their care. Armed with adequate knowledge a patient can assess if their
doctor is knowledgable. Armed with this knowledge a patient can hold their doctor
accountable for good care. Armed with adequate treatment knowledge a person can select
their own treatment regimen.

My organization, NATAP, has two missions: (1) advocacy for those with HIV and their
affected others with drug companies, the FDA, NIH, other Federal entities; (2)
dissemination of comprehensive and up-to-date treatment information to doctors,
patients, and other professionals in NYC, other parts of the USA, and internationally. We
do this through our treatment newsletter, NATAP Reports, our internationally read web
site, and our live in-person forums or seminars. Our in-person free seminars draw
more attendants than any other such events. Our 1998 January 17 forum at NYU drew
1500 registrants and 800 attendents. All of our forums get this amount of attendance.
We bring in leading scientists and researchers to bridge the gap between the science and
the doctors and patients. In October ‘97, we held a treatment education forum for 600
case managers right here in Brooklyn. There is a hunger for treatment information if
you meet the need in an appropriate way, which NATAP is capable of doing.

This is an important point I'd like to make with you. NATAP is now receiving a grant
from the NYS AIDS Institute for conducting a 7-month HIV treatment education program
with 7 community AIDS service organizations in Brooklyn. These organizations include
Lifetorce (a women’s organization), Musica Against Drugs (primarily Hispanic
individuals), Brownsville Multi Services Center (provides medical care and case mngt
services for afro-american and hispanic individuals), Bedford-Stuyvesant Family
Health Care Center, St Nicholas Scattered Site Housing, People of Color in Crisis, and
Brooklyn AIDS Task Force. Our program consists of visiting each organization once per
month for 6-7 months. The audience consists of staff and clients. Our program takes then
from soup to nuts about treatment for HIV. Our subject matter includes-HIV
Pathogenesis, current and future HIV treatments, perinatal transmission and treatment,
pediatric treatment, adherence, improving doctor/patient relationships and case
manager/client relationships. | do some of the presentations and we bring in doctors and
researchers to present some of the information. We are very well received by the
organizations. They are anxious to receive the trainings.

{ have encountered a situation where many clents and case managers have grossly
inadequate knowledge about HIV and treatment. To address this, in some cases we've had
to slow down our pace. 7 months is inadequate to accomplish our goal. Our goal is
ambitious--everyone who comes to our sessions will obtain a good understanding of HIV
and treatment, The funding for this program ends in June ‘98. Our program is being
very successful and should be continued but the funding is not available.


Cameron Craig

St. George Project

c/o Interfaith Medical Hospital
555 Prospect Place
Brooklyn, N.Y. 11238

In participating in supportive counseling, | am enabled
to educate those who have not infected. It has become
apparent in doing peer education and outreach that not
enough is being done to stem the tide of this epidemic in
Brooklyn. There is still a lot of ignorance and denial about
the transmission of HIV among our young adult and
teenage population. Government-funded supportive
counseling groups not only benefit those already infected,
but they also help to prevent HIV infection, because
participants in supportive counseling groups are
empowered to go out into the community, and speak with
their peers about AIDS education, thus, preventing others
from becoming infected.

| am one of those success stories. | am someone who
has benefited from the supportive counseling program at
St. George, which received Ryan White Title | funds.
Through my work in the counseling program, | now feel
comfortable talking to teenagers and young people about
the specific ways which HIV is transmitted. President
Clinton spoke about community involvement when he was

2


121

Li. Possible Impact on Client Services if Funding is Not Restored:

If Ryan White funding is no longer received by not for profit community based Haitian
organizations, the following problems are destined to develop:

° Premature deaths of clients due to lack of services
© Increased spread of HIV infection and reinfection

© Inability to understand and access necessary life saving treatment and adherence to
necessary drug regimen

© Threat of deportation to countries where there is no medical treatment available to poor
people who are HIV infected.

© Communication barriers will increase the incidence of lack of comprehension and
knowledge of available services, therefore clients will be falling through the cracks and
not getting the needed services.

© Difficulty in negotiating systems such as food pantry, entitlement benefits such as DAS,
food stamps, Medicaid, SSI public assistance, and housing.

© Increased isolation and depression due to the absence of culturally sensitive and
linguistically appropriate services.

© Clients will not be empowered to make informed decisions which may place them at risk
for progression of disease which ends in death.


124

stance abuse and HIV and AIDS and peer oriented services is part
of harm reduction. Harm reduction is not just a needle exchange.
Harm reduction is non-judgmental, it is low threshold and it

only prescription that is necessary. It’s the most crucial description
on my part necessary to combat HIV and AIDS in New York City,
New York State and the United States.

If I may say so, one piece that was brought up was clinical trials
for substance users. More studies need to be done with people who
are using substances and are accessing medications. t is not
being done.

Someone mentioned children. Of the cumulative AIDS cases in
children under AIDS, which is 1,195 in New York City, 68 percent
resulted from mothers who were infected through their own in-
jected drug use or through the sexual contact with an injecting
drug user. This population is driving this epidemic and because of
moral, social issues that are not being addressed.

Last, I’d like to say that we need to have the voice of experience,
the people who have the experience within the community, as part
of planning bodies and Community Boards. This voice is adamantly
needed. Professionals are needed, but we need to have the voice of
the community in there, and that means the guy who is still using
drugs, the guy who is recovering from drugs. I am a recovering
substance user and alcoholic and I’m here today because of my ex-
periences, iving a sense of responsibility for what I have to do to
make myself and my community better.

you.

Mr. SHays. Thank you very much.

Ms. Brown. Good afternoon. I’m the grandmom of four little girls
with HIV/AIDS.

Mr. Suays. And your name is?

Ms. Brown. Roberta Brown.

Mr. Suays. Roberta Brown. Thank you, Roberta.

Ms. Brown. I heard the doctors, social workers and everybody,
and they’re absolutely true that you have to travel from Brooklyn
to New York for the better medical treatment. I said that’s not
good, but I found that New York doctors do have better experience
than some of the medicine in cases that we deal with, such as those
that I have been taking care of; the oldest one since 1987 when she
was first diagnosed. We were going through a crisis at the time.

We didn’t go through within the home most of the time. SUNY
Downstate as the young lady said before, has started a child sup-
port group and it’s very, very good, but the problem is, when you
come out, what is there for her to do? There is no place for these
children to go to be with. They have to speak. There is nothing
there for them up here in Brooklyn, no outlet for them, no other
children to play with and they’re in the homes all day. This is my
main concern. To have something there for them besides the four
walls, and better treatment where we don’t have to go hunt for the
better medical advice.

And I have one more comment. The mother of these girls is my
niece. She’s been hospitalized four times and each time she’s hos-
pitalized, she leaves the hospital with about 12 medications. Be-
cause she doesn’t have any income and she’s not on social service,
she can’t get the medicine, so she comes out of the hospital, and


31

ATTACHMENT ©.

HIV UNINSURED CARE PROGRAM ENROLLMENT
01/01/97 - 12/31/97

“ADAP "ADAP PLUS. HOME CARE
New Vark City Active 01/97 - 12/97 | Active 01/97 - 12/97 | Active 01/97 - 12/97
Number Percent_| Number Percent _| Number Percent
TOTAL ENROLLMENT 12,976 100.0% 12,584 100.0% 433 100.0%
Uninsured 3,446 26.6% 2,946 23.4% 439.9%
Medicaid Interim 8747 67.4% 8.710 69.2% 348 80.4%
Insured - Partial 783 6.0% 928 7.4% 420 9.7%
CURRENT ACTIVE 8,776 67.6% 8,383 66.6% 64 14.8%
‘TERMINATED 4.200 32.4% 4,201 33.4% 369 85.2%
‘DEMOGRAPHICS
GENDER
Male 10,036 77.3% 312
Female 2.940 22.7% tat
AGE
(0-23 MOS. 340.3% 3
2-12 76 (08% }
13-18 350.3% 1
19-24 320 25% 1
25-49 10,798 83.2% 323
> 49 Wa7 132% 108
RACE/ETHNICITY
‘white 3.433 24.1% 36
‘African-American 4727 36.4% 200
Hispanic 4563 38.2% 123
Asian 162 1.2% 5
Native American 34 03% °
Unknown 351 2.7% 8
HOUSEHOLD SIZE
1 10,869 83.6% 340
2 0% 47
ae Voss 84% 4“
(COME
‘< $10,000 7375 56.8% 236
10,000 - 19,999 3133 24.1% 124
20,000 - 29,999 sia 17% 50
38 685 5.3% W
200 01.5% 9
65 (OS% 3
CLINICAL STATUS
‘CDC AIDS 47.2% 418
Hiv Symptomatic 15.3% 5
‘Asymptomatic 283% 4
Unknown 9.2% 6
‘COUNTY
Bronx 2548 19.6% 2,502 19.9% 17.1%
Kings 3.190 24.6% 3112 287% 30.5%
Manhattan 45 36.3% 4522 35.8% 31.9%
Queens 2.261 17.4% 2192 17.4% 18.7%
Staten Istand 262 20% 286 2.0% 18%
°

HVSDCH - 8105 Insttute. HIY Uninarnd Care Programs Het For Publication


7

blood to undetectable levels. People living with AIDS can now for
the first time make plans to live. However, while treatment may
result in a reduction of viral load, severe side effects from the
drugs may affect the quality of life for certain individuals.

The recent good news is changing the kinds of assistance needed
by this population. Agencies designed to serve the persons living
with the AIDS population must revise their services to fit this new
need. Basic services such as counseling, support group, nutrition
and case management will continue to be in demand. However,
housing, eb training and placement services will need to be ex-
panded. Health care coverage will need to be modified to allow for
sound treatment decisions based on current treatment options.

Since the early years of this epidemic, people working at local
community based organizations recognize the need for the wide
array of services and support for AIDS infected patients as well as
those affected by the illness. The local organizations have proven
themselves successful in engaging people in treatment and preven-
tion programs. For this reason, equitable funding under the Ryan
White CARE Act is important.

Brooklyn has a large number of locally based AIDS service orga-
nizations with established records of bringing care and help to
those suffering from this disease. In Brooklyn, there are three HIV
care networks; Williamsburg/Greenpoint/Bushwick; East New York/
Brownsville; and Bedford Stuyvesant/Crown Heights. These net-
works are providing culturally and linguistic appropriate services
that recognize the need to provide a continuum of care to the AIDS
community.

AIDS is changing, but we should not forget that it is still an ur-
gent and unprecedented health crisis. Many People do not respond
to the combination therapies. Estimates of failure are as high as
40 percent, and even those who do are still faced with the likeli-
hood of eventual disability and a greatly shortened life.

I would like to take this time, however, to commend all who do
the hard work to combat this disease. I am sure that the testimony
that you are about to hear this morning will be enlightening and
rewarding. And we are encouraged today in the Borough of Brook-
lyn that you have brought this hearing here.

I want to take this opportunity again to welcome you to Brooklyn
and to thank you for the opportunity to testify before you this
morning.

Mr. SHays. Thank you, Madam President. We thank you for your
words of welcome and your very thoughtful testimony. We appre-
ciate your testimony and extend our word of welcome. Thank you.

At this time we will hear testimony from our first panel, which
is comprised of two people, Dr. Rosa Gil, special adviser to the
mayor on Health Policy of New York, and Humberto Cruz, director,
Division of HIV Health Care, New York State Department of
Health. I would like both those individuals to come forward. Re-
main standing, and I'll swear you in.

[Witnesses sworn.]

Mr. Says. I would like to deal with a housekeeping issue before
we begin. I ask that the members of the subcommittee be per-
mitted to place an opening statement in the record and the record
remain open for that purpose. I ask further that all witnesses be


139

Culture, Language and Literacy:

‘The Haitian Community is one which perceives itsetf to be very different from other Caribbean
‘oc African American corumunities, Haitians have encountered barriers in health care due to
AIDS discrimination. In addition, many Haitians will try to cure an ailment through traditional
‘medicine before seeking medical treament by a doctor, uatil the illness is at is tertiary stage.

communication. Diligent efforts are made by staff of Haitian Women’s Program to dispel these
myths, encouraging clients to seek, obtain and utilize the needed services.

TIL Possible Impact on Client Services if Funding is Not Restared:

If Ryan White funding is no longer received by not for profit commnnity based Haitian
‘organizations, the following problems are destined to develop:

e Premature deaths of clients due to lack of services

° Increased spread of HIV infection and reinfection

© Inability to understand and access necessary fife saving teatment and adherence to
necessary drug regimen

© Threat of deportation to countries where there is no medical treatment available to poor
people who are HIV infected.

© — Comumunication barriers will increase the incidence of lack of comprehension and
Icnowledge of available services, therefore clients will be falling through the cracks and
‘not getting the needed services.

© Difficulty in negotiating systems such as food pantry, entitlement benefits such as DAS,
food stamps, Medicaid, SSI public assistance, and housing.

. Increased isolation and depression due to the absence of culturally sensitive and
linguistically appropriate services.

. Clients will not be empowered to make informed decisions which may place them at risk
for progression of disease which ends in death.

Hhstian Women's Program thanks you for your time and consideration aboat these critical issues

‘that will impact the community served. I appreciate the oportunity you have provided in
allowing me to make these points known.

68 456 3-20-98 05:15AM Foro #37
Re97% 118 058 4542 02-20-98 08:15


46

DeMarrais, actually, a constituent of mine from the great State of
Connecticut, I will not show undue attention; Yannick Durand and
Christine Meyers, peer counselor, Shades of Lavender. Now, you're
going to be accompanied by, Ms. Meyers, Yannick Durand, is that
correct? Now, how many names did I screw up here, and I'll for the
record say them better.

I’m sorry, Cameron Craig, the St. George Project, Interfaith Med-
ical Center; Gwen Carter, HIV Prevention Alliance. Any others?
We need more chairs.

I want all of you to be thinking right now how you're going to
keep your opening statements within 5 minutes.

ir. PEDRAZA. We're going to try as hard as the last panel did.

Mr. SHays. Could you all stand, please? OK, now, let’s do this.
Let me swear you all in.

[Witnesses sworn.]

Mr. Suays. Thank you, everyone responded in the affirmative for
the record. Are you sitting in the order that I called you? OK. Since
I may have mispronounced some names here when you gave your
testimony, you can state your name again for the record and I'll lis-
ten. And we are going to be fairly strict with the 5 minutes. If the
red light goes on, I'll give you a few seconds more, but not much.

STATEMENTS OF JAIRO PEDRAZA, HIV HEALTH & HUMAN
SERVICES PLANNING COUNCIL OF NEW YORK CITY;
ANTONNE MOORE, COORDINATOR, EAST NEW YORK/
BROWNSVILLE HIV CARE NETWORK; JULES LEVIN, EXECU-
TIVE DIRECTOR, NATIONAL AIDS TREATMENT ADVOCACY
PROJECT; ADALINE Q. DEMARRAIS, EVERGREEN NETWORK;
CHRISTINE MEYERS, SHADES OF LAVENDER PROGRAM RE-
CIPIENT, ACCOMPANIED BY YANNICK DURAND; CAMERON
CRAIG, ST. GEORGE PROJECT, INTERFAITH MEDICAL CEN-
TER; AND GWEN CARTER, HIV PREVENTION ALLIANCE OF
NEW YORK CITY

Mr. PEDRAZA. OK, buenas dias. I’m going to try to be, to stay as
the other panel as strict as them and I'll try to do my best.

Mr. Suays. Thank you, sir.

Mr. Pepraza. Thank you for the opportunity to address this com-
mittee.

Mr. Suays. Say your name again?

Mr. PEDRAZA. My name is Jairo Pedraza. You did quite well.

Thank you for the opportunity to address the committee on the
changed needs of people with HIV and AIDS due to treatment.
Again my name is Jairo Pedraza and I’m the Community Co-

ir——

Mr. Suays. I’m sorry. Some mics pick up everything. This one is
that, if you don’t talk into it, it doesn’t pick it up. Just lower it
down a little bit. Lower it even more, because you're reading.

Mr. Pepraza. Is that better?

Mr. Suays. I’m going to have you lower it more. Keep going
down. You got it.

Mr. PEDRAZA. Again, my name is Jairo Pedraza and I’m the com-
munity co-chair of the New York HIV Health and Human Services
Planning Council. In that capacity, I help represent the voice of the
community in planning for Ryan White title I money that New


6

widely as possible, because it has been demonstrated time and time
again, that needle exchange programs do not on the one hand ei-
ther at all or certainly not substantially, increase usage, but
do greatly inhibit the spread of this epidemic and could save poten-
tially thousands and thousands of lives. So I again thank you, Mr.
Chairman and Congressman Towns and Nydia for bringing this
hearing here. I regret I can’t stay for the rest of the hearing, but
I look forward to reading all the testimony here and to the progress
that will be made from this hearing. Thank you.

Mr. SHays. Thank you very much. It’s wonderful to have you
with us as well.

Now, we have with us a congressional hearing. Before it begins,
Members give long statements, and now we're ready to start and
to welcome you, deputy borough president of the Borough of Brook-
lyn, Jeannette Gadson.

STATEMENT OF JEANNETTE GADSON, DEPUTY PRESIDENT,
THE BOROUGH OF BROOKLYN

Ms. GapDson. Thank you, Mr. Chairman, Congressman Towns,
Congresswoman Velazquez, Congressman Nadler. It is with great
privilege and pride that I take this opportunity on behalf of the
people of Brooklyn and on behalf of the Honorable Howard Golden,
the borough president of the borough of Brooklyn, to welcome you
to Borough Hall for this very important hearing this morning, this

ublic hearing regarding AIDS issues by the House Government.
form and Oversight Subcommittee on Human Resources.

After more than a decade of anguish, the AIDS epidemic across
the Nation has shown a dramatic decrease over the past 2 years.
The New York Times reported that AIDS deaths plummeted by 48
percent last year. However, New York City has been and continues
to be the epicenter for this dreaded disease. With 3 percent of the
Nation’s population, New York has 17 percent of the country’s
AIDS cases, and even with the good news for 1997, on average, 7
people die each day from AIDS in New York City.

e population affected by this disease has shifted. Women and
children are increasingly forming a larger percentage of the new
HIV and AIDS cases. In New York City as of June 1997, women
comprise 21 percent of all AIDS cases. Nearly one in four pediatric
cases in the Nation have been reported in New York City. Cumu-
lative reported AIDS cases for adolescents in New York City rep-
resent one-third of the adolescent cases nationwide. In Brooklyn,
there are more women, children, adolescents and African-Ameri-
cans diagnosed with AIDS, as well as more orphans as a result of
parental death from AIDS, than in any other borough of the city
of New York.

Thirty-three percent of the reported cases of women with AIDS
in New York City live in Brooklyn; 35 percent of pediatric AIDS
cases are found in Brooklyn; 86 percent of the people living with
AIDS in Brooklyn are minorities, 28 percent Latino and 58 percent
African-American.

Recent medical advances utilizing protease inhibiting drugs have
had profound effects on not only the life span for people living with
AIDS, but also on the quality of life of AIDS sufferers. Advanced
drug combinations have been able to reduce the level of HIV in the


40

we felt very badly 5 years ago when we went through the Ryan
White authorization because we wanted to add other factors, other
co-morbidity such as substance abuse and homelessness, which
were represented in the situation of New York State and New Jer-
sey, but which were not related to other parts of the Nation.

I think that the Ryan White authorization is one of the most im-
portant areas that we have to address and I was very concerned
that in any of our testimonies we never addressed that particular
issue. The new formulas that are being discussed will push for live
cases of HIV positive individuals and will be targeted to emphasize,
meet the State’s and the need of the country and culturally to
where we have the greatest number of the epidemic. Therefore, we
have to push continuously at the congressional level for formulas
that will continue to use the factors that we already have, which
is homelessness, substances abuse and the HIV cases that we have.

avid.

Mr. HANSELL. You made the point that I was going to make,
which is that the formulas look strictly just at cases. Well, of
course, New York has the largest number, but they don’t reflect the
fact that as Dr. Gil pointed out, we not only have the largest num-
ber of cases, we have the most complex epidemic to respond to. We
have the largest number of people who are living with HIV and
homelessness and tuberculosis and sexually transmitted diseases
and substance abuse in the country, so it’s important that the for-
mula reflect not just the number of cases we have, but the complex-
ity of the epidemic that we have to respond to and frankly the cost
of doing that.

Mr. Towns. Let me ask one more question. Is my understanding
that New York City only counts AIDS patients? It does not count
HIV infections because of civil liberties concerns, is that my under-
standing?

Dr. GIL. The reporting is on the AIDS cases, correct.

Mr. Towns. Let me ask you this question: Would the funding to
organizations cl re if were counted along with AIDS? See,
Tm concerned. You know, somewhere, some number here is just not
hitting me right. I’m not sure what it is, but something, my mother
can say, “Something ain’t right.”

Mr. SHays. Why am I beginning to feel like I’m in a black Bap-
tist church?

Mr. Towns. You can handle it, Mr. Chairman.

Mr. Suays. Can you turn the mic down just a—tilt the mic down.

Mr. HANSELL. You're actually correct that actually under State
law, because the States have the rules for surveillance of diseases
like this, we only require reporting of AIDS cases, not HIV infec-
tion. We know there are currently about 35,000 people living with
AIDS in New York City. We believe there are about 130,000 people
living with HIV, but we don’t know that, because we don’t have re-
porting. It’s difficult to know whether the proportions in New York
City are different from what they would be in other cities, so if we
had HIV reporting, certainly we would know how many people are
involved. We don’t know whether that would be more or less than
elsewhere, but we do know there are many States in the country
that already require HIV reporting.


120

Al, Demographic Data Supporting Need for Services:

According to the 1990 census data, there are approximately 500,000 documented Haitian
immigrants in the New York City area. However, is estimated that there are one million
Haitians in the entire city when accounting for those who are undocumented, and under reporting
errors. Brooklyn has 73.54% of Haitian immigrants settling in New York between 1983-1989.
Of this group, there are individuals who are HIV positive and are in desperate need of
assistance. In Brooklyn, 71% of the immigrant AIDS cases are from Haitians.

According to the World Health Organization (1990), Haiti ranks amongst the highest
countries with reported AIDS cases in comparison to other reported AIDS cases in the
Caribbean.

‘There are also several barriers which impedes Haitian’s access to AIDS treatment and prevention
services. They are:

Welfare Reform/ Immigration Laws:

The new welfare reform and immigration laws greatly hinder access to services for
Haitians and other immigrants. HWP staff has acquired a great deal of expertise in
linking clients to immigration attorneys and advocating for services on their behalf
despite the new laws.

Socio-Political:

Haitians were inappropriately included as a high risk group for HIV/AIDS and barred
from donating blood by the Food and Drug Administration in 1983. Coupled with this
fact and the heighten anti-immigrant sentiments, Haitians are reluctant to receiving
appropriate services due to these past experiences. At Haitian Women’s Program, clients
receive culturally sensitive, linguistically appropriate information.

Culture, Language and Literacy:

‘The Haitian Community is one which perceives itself to be very different from other
Caribbean or African American communities. Haitians have encountered barriers in
health care due to AIDS discrimination. In addition, many Haitians will try to cure an
ailment through traditional medicine before seeking medical treatment by a doctor, until
the illness is at its tertiary states. Many Haitians do not seek out the appropriate services
due to language barriers and poor communication. Diligent efforts are made by staff of
Haitian Women’s Program to dispel these myths, encouraging clients to seek, obtain and
utilize the needed services.


19

March 1997. 7.686 new clients were enrolled in health program categories. (See Attachment B}
Of these new clients, 41.8% were black. 41% Hispanic, 10.6%» white. 1.1% Asian/Pacific
Islander. New clients in health programs are also widely distributed across the five boroughs. In
fact. the four outer boroughs are represented among new clients at least in proportion to their
relative percentages of live AIDS cases. (See Attachment C)

Looking specifically at the ADAP and ADAP Plus programs. New York City enrollment
at the end of 1997 stood at approximately 13.000. of whom 73.8% were minorities. which
excludes whites and other categories. (See Attachment D) Blacks and Hispanics each represent
about 36% of active enrollees in these programs. whites about 24%, Asians about 1% and Native
Americans 0.3%. Utilization of anti-retroviral combination therapy by ADAP participants has
also grown. Approximately three-quarters of ADAP enrollees were receiving triple combination

therapy of some kind in the last quarter of 1997. and the variation among racial groups is

relative-ly small. from 71% for blacks. to 75% for Hispanics to 77% for whites. (See
Attachment E)

Another indicator of combination therapy utilization in New York City comes from the
CHAIN study. conducted by the Columbia University School of Public Health for the Ryan
White Council. CHAIN isa longitudinal study. currently in its fifth year. which has been

following a representative cohort of HIV-infected New York City residents over time.

The findings revealed that in June 1996. only 22% of blacks and 36% of Hispanics were
taking combination therapies of any kind. compared to 55% of whites. (See Attachment F. p.1)

Analysis shows that racial/ethnic disparities in the use of combination therapies seemed to be


14

only 32% of the nation’s population, The city has the oldest, largest. and most complex AIDS
epidemic in the country, More than 100.000 New York City residents have been diagnosed with
AIDS since the beginning of the epidemic in 1981, and more than 65.000 of them have died.
41% percent of New York City residents living with AIDS are black. 33% are Hispanic, 25% are

white. 0.76% are Asian’Pacific Islander. and 0.04% are Native American.

Dramatic advances in HIV weaiment in past 1wo years

The approval of the first protease inhibitor in late 1995 has proven to be a watershed in
the history of the HIV epidemic. We now have four FDA-approved protease inhibitors. as well
as a range of other anti-retroviral drugs. The new array of HIV therapies has dramatically
improved our ability to intervene clinically to slow. or in some cases even to reverse, the course
of HIV infection. In November 1997. the Department of Health and Human Services released its

revised “Guidelines for the Use of Anti-retroviral Agents in HIV-Infected Adults and

Adolescents.” which established a new standard of care incorporating these newly-available

medications. The medications are so new. however. that many questions remain unanswered.

and even the recently-released guidelines extend signiticant discretion to physicians in
determining the best course of treatment for an individual patient. Thus. while the guidelines
recommend combination anti-retroviral therapy for all patients with symptomatic HIV’ infection.
they do not definitively establish standards of care for asymptomatic patients. instead
encouraging physicians to discuss treatment recommendations with patients based on an array of

individual considerations. The guidelines do clearly express a preference for triple combination



3

As the treatment of AIDS continues to evolve toward the man-
agement of chronic disease, services provided by nursing facilities
will become increasingly important. Medicaid will be the major
payer for this care. Therefore, Medicaid policies will affect the
types and locations of the long-term services available to Medicaid
recipients with AIDS.

The Federal Government has given the States broad discre-
tionary powers to develop Medicaid policies for the health service
available to the program recipients in their States. As a result,
Medicaid policies vary widely from State to State, with recipients
in some States having access to a broader range of services than
in other States. Federal policy may need to be changed to allow
treatment and management of AIDS.

Mr. Chairman, I believe that we can win this battle if Federal,
State and local governments and local community organizations
work together. I think that we have to look at what the problems
are, make certain that the money goes to where the problems are
and that we’re able to do that and I think we will be able to bring
down the numbers even lower, and I would look forward to hearing
from our witnesses, and I thank my colleagues, Jerry Nadler and
Nydia Velazquez, for joining us and I also appreciate their help in
working with me in trying to change the formula in Washington,

Mr. Chairman, I yield back.

Mr. SHays. Thank you. And at this time we would call on Nydia
Velazquez; we welcome you to the committee.

Ms. VELAZQUEZ. Good morning, Mr. Chairman, and Members of
this panel. I would like to express my sincere thanks to Congress-
man Shays, the chairman of the subcommittee, and Congressman
Towns, the ranking member of the subcommittee, for putting to-
gether this important hearing.

Today’s hearing comes at a moment when there is much to be
encouraged about in our fight against AIDS, but there is also much
to be concerned about. The good news is that the death rates are
falling, new treatments offer hope, and we are thinking about sur-
vival in terms of years, not months. The bad news is that the epi-
demic has tilted heavily toward minorities. In fact, right now AIDS
is the leading cause of death among Latinos in New York City be-
tween the ages of 25 and 45. The worst part of this tragedy is that
while funding for AIDS prevention and treatment has increased,
the organizations that serve minority communities still lack access
to funds to meet the need for services.

It is my hope that today’s hearing will shed some light on how
we can begin to solve these problems. This debate becomes more
important in light of the great strides we’re making in the fight
against AIDS. We have begun to see significant advances in the
treatment of this disease. AIDS survival rates are increasing dra-
matically. According to the Centers for Disease Control and Pre-
vention, in 1981, the median survival rate was 9 months. By 1993,
it was over 2 years. In the first half of 1997, AIDS deaths dropped
by 44 percent across the country and by 50 percent in New York
City alone, yet the drop was just 5 percent among Latinos. There
was no improvement in blacks.


132

Page 2, Testimony

treatment options” meaningless.

Lack of access to these life-saving services is caused by a number of factors,
including the most obvious ~ poverty, hopelessness, stigma, fear of discrimination, and
becoming too ill to “take care of business”. Welfare reform, new rent laws in New York
City, immigration reform, and managed care have all added extra layers of regulation
complexity in a system where access to services is already replete with “land mines” of
complicated and intricate rules used to determine and maintain eligibility for services —
rules so complicated that legal aid/services attorneys practicing Medicaid and welfare law
for many years, cannot understand them.

Add to these factors a lack of neighborhood-based resources for care and service
in the hardest to reach low-income communities of color, and the result is a continuing
escalation of HIV transmission, serious illness requiring lengthy hospitalizations and
nursing home care, more AIDS orphans with deep emotional and psychological injuries,
and the skyrocketing costs of “emergency room’ medical care as the medical care of last
resort.

What is to be Done?

While many approaches are needed to improve access to desperately needed
services, and in particular for special populations and communities historically under
served through inadequate allocation of resources, two will be presented through this
Testimony for the Subcommittee’s consideration.

Move Away from the Trend Toward Consolidation of Care and
Services: Place Medical Care and HIV-related Services in Underserved
Communities of High Need

Placing services and care in locations where they are most needed seems a rational

and simple solution. Unfortunately, in what is described as a “cost-containment” measure,
just the opposite is happening in New York City, and there are disturbing indications that
“consolidation” may be a national trend. A look at recent New York City Ryan White Title
I funding decisions serves to illustrate this point.

That the epidemic has reached a critical stage in Brooklyn due to even increasing


110

port group in 1987 for the affected children, and I’ve been working
with those children ever since.

Mr. Says. Since 1987.

Ms. DEMARRAIS. Yes.

Mr. SHays. 1987 is when Stewart McKinney, my predecessor,
died of AIDS. One of the most unbelievable stories in my judgment
is how his wife made a determination that she would devote her
life to helping people who were affected by AIDS, and she opened
homes for individuals who were HIV positive. She also opened a fa-
cility in Washington, DC, Stuart McKinney House, which basicall
was a home in which mothers who die of AIDS are with their chil-
dren, are providing the transition for their children to meet their
new mom and the mother and the new mother and the children
live together. It’s a very touching and moving program, and it’s the
kind of part of this story that doesn’t quite get told what happens
to the children whose parents have died of AIDS.

Ms. DEMarRRals. That’s why we need guardianship issues.
Guardianship issues are critical to be looked at. I’ve worked with
the probate court in Connecticut, the administrative court, probate
court to set up guardianship programs so that parents can do ad-
vanced planning, can identify a guardian, and also temporary
guardianship while they are alive and may need help caring for the

ildren.

So guardianship is a critical issue for children whose parents
have this disease, that there is continued supervision, guardian-
ship. A child cannot survive in our society without a guardian. You
can’t get medical care, can’t go to school unless you have a guard-
ian. When a parent dies, I’ve had children refused medical care be-
cause their parent died a few weeks before. They were now sick
themselves and the doctor would not treat the child.

Mr. Suays. I would hope you would contact my office in every in-
stance that that happens, and I’m really embarrassed that I
haven’t come by to see your program. How many young children
are you helping right now?

Ms. DEMarrals. Approximately 200 children.

5 Mr. Suays. Did you ever suspect it would increase up to that
level?

Ms. DEMarralIs. No, I had no idea. And in fact I’ve been telling
people within the State of Connecticut that I knew the numbers
were growing rapidly, because I had women coming to the support
group saying, and the women were saying I have 3 children, 2 chil-
dren, 4 children and we were doing Easter baskets for 100 chil-
dren, so I knew we had huge numbers and when I turn around and
say to State officials, if I have this many and I’m only working with
part of the children in Bridgeport, I know that there are 2,000 chil-
dren in the city of Bridgeport alone, within the State of Connecti-
cut, we’re looking at 10,000 children orphaned already.

Mr. Suays. I'll get back to the children, but how many programs
like yours are duplicated in the State of Connecticut?

Ms. DEMaRRAIS. We're starting to see a few come. Yale has start-
ed one. As far as I know, there are three or four now.

Mr. Suays. I'd like to ask about all of you, but Jairo, I’ll come
to you if you want to make a comment if you’re aware of programs


69

vergreen
fetwork

Friends Through the Seasons

February 20, 1998

Congressman Shays, and Committee Members, thank you for this opportunity to share
with you some concems that I have about the current and futere psycbosocial/medical
response to people infected and affected by HIV/AIDS.

As the founder and director of the Evergreen Network, Ine, a social service agency in
Bridgeport, Connecticut that primarily serves economically maginalized families and
individuals touched by HIV.'AIDS in the southern Connecticut, I work with over 150
infected adults, 200 affected children and their families

Tn 1985 I was arnong the first in U.S. to realize that large numbers of children were being
orphaned by this disease and were not being recognized or provided for by social service
programs at any level. For the past 12 years I have worked with children and families as
their parents died from this disease. Today because of the new drug therapies, we are
starting to see longevity for these people, however stemming from my years of
experience in this field, I have many significant concems about the gaps in service,
continued access to treatment and the lack of coordination of care among community,
city, state and federal providers,

The issues tha: I have identified sre:

1. The affected children in these families must have a system of temporary guardianship
and mental health services available for them and social,
‘stop with the death of the parent. Even with improved prognosis, their parents
‘will still require occasional hospitalization and/or bed rest because of their fragile
health systems. The children in affected families need to be assured of continuous,
uninterrupted care and supervision during these times of acute parental illness or
death. In addition, I have repeatedly seen that the stress and trauma of
their parents’ illness and possible death necessitates the need for mental health
services for these childrea. And these mental health services need to be available for
extended periods of time and for multiple periods of treatment. Children grieve and
resolve trauma developmentally. What is resolved at age six needs to be dealt with
again in middle school and high school at the very least. The numbers of these
children are significant ~ over 30,000 in NYC alone, as reported by The New York
Times. If we have any hope of these children becoming contributing members to
our communities, we must provide these services.

Evergreen Network, Inc. P.O. Box 3201 “Bridgeport CT 06610 (203) 254-0311


24

maintain our existing infrastructure to keep pace with the growing number of people needing
services.

Second. the Administration has had under discussion for some time the possibility of
allowing states to apply for a Medicaid waiver to establish Medicaid eligibility based upon a
diagnosed HIV infection. rather than full-blown AIDS, and with somewhat higher income limits
than for general Medicaid eligibility. Currently. in most states. one must receive a diagnosis of
AIDS in order to qualify for Medicaid. This defeats the entire thrust of new. early treatment with
combination therapies. Recent indications are that the administration has abandoned the effort to
develop such a waiver program. perhaps because it believes it has been unable to meet the waiver
requirement for cost-neutrality under the Medicaid program. We believe that early treatment is
not only cost-effective but imperative. given the lives it would save and the productivity it would
restore. We would strongly recommend that the Congress urge the Administration to give every
consideration to implementing this waiver program.

Lastly. we are very concemed about the impact of the changes made in the welfare and
immigration laws enacted by Congress in 1996 with respect to immigrants. Approximately nine
percent of New York City’s AIDS cases are among foreign-bom residents, predominantly from
the Caribbean, Central and South America. Under recently-enacted changes. most new
immigrants must wait until they have resided lawfully in the United States for five vears before
becoming eligible for most federal benefit programs. More than 900.000 immigrants nationwide
have already lost Food Stamp benefits. and many more will. In addition, many PRUCOL aliens

(Persons Residing Under the Color of Law). who are currently receiving SSI and Medicaid


143

The third cohort is 0-9 years old. Some of these children may live perfectly
“normal” lives; we have the medical technology and the infrastructure, created by Title
TV of the Ryan White CARE Act, to make it possible for these children to live healthy
lives. But, we must ensure equal access to the new therapies and to new support
systems, support systems that empower these children to live, and not treat them as if
they will die.

There are several contextually logical reasons why the oldest and second oldest
cohort of congenitally infected adolescent were not informed of their HIV status. First
and foremost, these children were not expected to live long enough to be at risk of
infecting others through sexual contact or through needle-sharing. The parents of these
children often died, and the guardians who took over their care were ill-equipped to
deal with notification issues and the consequences. The Ryan White CARE Act was
born out of Ryan’s experience with AIDS discrimination. No parent or guardian would
ever want their child to go theough what Ryan did, and might take every precaution,
including telling no one of their child’s HIV status, to prevent that experience. But
today, children who are born HIV positive will most probably live healthy lives, and
we need to address this issue of a young person's right to know their HIV status.

Tam an advocate for youth, and particularly youth empowerment. I believe
children have a right to know about their own health, and a right to take whatever steps
necessary to promote their good health. And so, I think that children have a right to
know about their HIV status. But | think that if that notification were to be codified into
Jaw, legislators must think about how children are told that they are HIV positive. Most
HIV positive children will have an HIV positive parent who may or may not be alive
when it is age appropriate to tell the children about his or her status

I would suggest, of course, that HIV positive youth and their parents engage in a
discussion. The government and the AIDS service providers have a role to play in
encouraging such discussions, particularly for children and parents who would not
otherwise engage in such conversations.

Page 4


10

HIV care is the Medicaid program. The “C! ‘ing Environment
Study” done in the fall of 1997, for the New York Ryan White Plan-
ning Council estimated that between 55 to 80 percent of HIV in-
fected individuals in New York City rely on Medicaid for their
health care. New York State’s Medicaid pro; provides enhanced
reimbursement rates for HIV primary medical care, and a broad
network of institutional and individual providers in New York City
participate in the Medicaid Program.

The Medicaid pr also had a drug formulary that covers
every FDA approved anti-retroviral treatment for HIV infection.
The Medicaid program is supplemented by services supported by
the Ryan White CARE Act. Ryan White is designed to complement
entitlement p: s by filling gaps in critical services and that is

recisely the role that it plays in New York City. Title I of the

yan ite CARE Act which provides funding to New York City
and many other localities nationally, pays for medical care for indi-
viduals who do not have private insurance and do not qualify for
Medicaid. Under Federal law, the Ryan White Planning Council de-
termines how the title I money coming to New York City is allo-
cated.

In recognition of the increasing prominence of medical care of
HIV-infected New Yorkers, the Council this year has allocated al-
most $40 million to di reimbursement and outpatient medical
care, more than ever before. The Council also allocated almost $1
million for treatment education and support programs in recogni-
tion of the challenges for HIV patients in understanding their
treatment options and remaining adherent to therapy.

The bulk of title I moneys for medication and health care sup-
ports two critical programs. Like every other State, New York has
an AIDS Drug Assistance Program or ADAP that provides medica-
tions for the uninsured and underinsured people with HIV. Unlike
any other State, however, New York has also created a unique pro-
gram called ADAP Plus, which provides access to primary care
services and laboratory tests for disease management. By filling
the gap between private insurance and Medicaid, these programs
ensure that no New Yorker is without access to HIV care and anti-
retroviral medications for reasons of financial need. New York
State and New York City have operated in a very close partnership
since the inception of the Ryan White prperam to make sure that
these rograms remain adequately funded and available to all who
need them.

Let me turn now to the next important question. Are these pro-
grams working? We have recently found that the most definite an-
swer yet to this question seems to be a resounding yes. Our surveil-
lance data, just analyzed through 1997, shows a dramatic decrease
in the rate of deaths due to AIDS and you can see attachment A
to my presentation. Over the 2 years since protease inhibitors first
became available, AIDS deaths in New York City dropped 63 per-
cent from approximately 7,046 cases in 1995, to approximately
2,577 in 1997. We have not recorded so few AIDS deaths in New
York City since 1986, when the epidemic was much more limited
than it is today.

Equally heartening is the fact that these declines are seen across
all population groups as reflected in attachment A. There were de-


141

PASA’s programs teach people to recognize and internalize the state of being
‘empowered so that they practice making healthy choices as a daily activity. Ideally, this
practice should be the approach to HIV prevention, particularly for young people, in
our country.

1am submitting my testimony for two reasons. First to make recommendations
about tracking the epidemic’s changing path and second, to inform the discussion about
adolescents who have been infected since birth. Frequently, the government and the
government's advisors, are too quick to make recommendations without studying the
issues in depth. I think that the goverament, and the legislators that comprise it, need
to reflect on changing practices, and practicing change.

The two topics about which I write today are ones that are developing in the
Brooklyn community. One focus is the discussion about the controversial issue of HIV
surveillance and tracking who is becoming infected with HIV. Currently, we are only
tracking who is dying of AIDS. The other issue is about programs designed to serve
young people who have been infected with HIV since birth, young people who are now
entering adolescence.

There are two recommendations that I would make on the controversy
surrounding HIV surveillance. First, [strongly recommend that we focus on the real
issue: tracking the epidemic. In order to adequately track the changing pathways of
HIV infection, we will need to commit resources to HIV surveillance and widen the
collection net for information. Second, I strongly urge that legislators not be distracted.
by the debate of names reporting versus unique identifiers, ‘This controversy clouds
the necessity of changing our response to HIV infection and AIDS as the disease
transitions into a chronic and manageable illness. We have the tools, technology and
know how. Let's not be distracted from our goal: to keep people living healthy lives.

I think it is meaningful to consider the importance of HIV surveillance. We have
done our job well and people with AIDS are now living longer. The reporting of AIDS
diagnosis tracks who is dying of the disease, HIV surveillance tracks who is becoming
infected with HIV. In terms of prevention and disease management, it is important to
know who is becoming infected with HIV because early intervention is life saving,

Page 2


ATTACHMENT 8.

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Gwen Carter Testimony
HIV Prevention Alliance of New York City
Page 3

respectively.’ The epidemic in New York City is now clearly located in communities
of color, with Blacks being most heavily impacted.

Today | am here representing the HIV Prevention Alliance of New York City
(HPA). The HIV Prevention Alliance of New York City is a collaborative
development among Black AIDS service providers citywide. HPA provides technical
assistance to these HIV prevention service providers in developing organizational
capacity; and needs assessment and strategic planning to inform gaps analyses,
service planning and infrastructure development. Beginning in the Spring of 1997,
the Executive Directors of HPA’s twelve organization came together, under the
leadership of the Harlem Directors Group, an alliance of community based providers
in Greater Harlem and Upper Manhattan, to highlight what was then a glaring
disregard by federal funders of the HIV prevention needs of Black people in high
prevalence communities. The critical role played by Black community-based
organizations in this epidemic had also been ignored. Common among all the
agencies involved in the coalition were boards of directors, executive directors and
staff that were predominately Black, and they all had experience and exceptional

track records in delivering HIV prevention services. Each of the agencies also

‘Bureau of Disease Intervention Research, New York City Department of Health.
Epidemiologic Profile of HIV/AIDS in New York City. September 1997. p. 2.


140

PASA AS

Kathy Dee Zasiott Prevention through Education and Training
Exacutve Oreste

Testimony for Human Resources
and Intergovernmental Relations Subcommittee
Field Hearing on AIDS: February 20, 1998

My name is Kathy Dee Zasloff and I am the Executive Director of People Against
‘Sexual Abuse (PASA), a community-based organization (CBO) in Brooklyn that
provides education and training to eliminate all forms of sexual violence. As Executive
Director of PASA, I design and field-test the youth and adult trainings that PASA offers,
Jocally and internationally. I am also an active member ina variety of local, state and
international networks of CBOs that focus on youth empowerment, community
development and violence prevention. Iam a member of the NYS Department of
Health’s, Aids Prevention Planning Group (PPG) and co-chair the PPGs emerging
issues committee.

Thus, Iam pleased to submit my testimony as: an advocate for innovative youth
programs; someone who has developed youth programs in collaboration with young
people; someone who is involved in interpreting the data and trends of HIV infection;
someone who interacts with both AIDS and youth service organizations in Brooklyn
and other boroughs; and asa health educator that has a finger on the pulse of emerging
issues facing youth and AIDS programming today.

As someone involved in health services as opposed to health care, I submit to
you that the health service response is AIDS and HIV is, properly, concentrating on
taking care of those already infect «d, and preventing others from becoming so. This is
in contrast to the medical community's response to AIDS, which is finding a cure for
AIDS, and finding a vaccine. The only protection we have in the health service sector is
education on how not to become infected and that means helping people to make
healthy choices.

People Against Sexual Abuse, Inc.
S57 From Sree! ain Floct (718) 8329467 voce (718) 834-1033 TTY
Brookyn, NY 1720 1718) 6210018 la ermal nlo@pasa.org


91

Cameron Craig

St. George Project

c/o Intertalth Medical Hospital
555 Prospect Place
Brooklyn, N.Y. 11238

results, and more importantly, to longer lives for those who
are HIV positive.

The Federal government should fund more post-HIV
counseling to reduce noncompliance of drug regimens and
suicide. As these new drug therapies come on-line, and
turn AIDS into a chronic illness, the government needs to
do more about the mental state of clients or consumers
taking these drugs. In fact, more research into the
relationship between mental health, stress, and chronic
diseases, particularly immune diseases, could help not only
AIDS patients, but a wide variety of people affected by other
stress-inducing illnesses. Researching the impact of
stress, and ways to reduce it, is less expensive than
treating the diseases that stress aggravates.

Those of us who are HIV positive have many issues
deciding how we adhere to the drug therapies, when and if
to disclose to family and friends, maintaining or finding
employment, and issues in our personal life. The stress
level that we maintain in facing these issues contribute to

7


11

clines in deaths among men and women in the Hispanic, white,
black, Asian race ethnic upings, although as was the case last
year, declines were more matic in men. Male deaths declined 71
percent overall and ranged from 59 percent for blacks, 72 percent
for Hispanics and 78 for whites and 83 for Asians. Female deaths
declined 63 percent overall and ranged from 59 percent for blacks
and 66 percent for Hispanic and 73 percent for white.

Overall, AIDS remains the third leading cause of death in New
York City and remains the leading cause of death in those aged be-
tween 1 and 14 years of age and 25 to 49. While more analysis is
necessary, these data certainly tell us that the broad access to new
anti-retroviral combination therapy is making a dramatic dif-
ference in the life spans.

The clients who are served through Ryan White title I programs
bear out the fact that the programs are reaching predominantly mi-
nority populations who are in great need of these services. Title I’s
health p , excluding ADAP and ADAP Plus, has a total en-
rollment of 12,976 in calendar year 1997. During the last program
year, which ended in March 1997, 7,676 new clients were enrolled
in health program categories. You can see in attachment B. Of
these new clients, 41.8 percent were black, 41 percent Hispanic, 10
percent white, 1.1 percent Asian/Pacific Islander. New clients in

ealth rograms are also widely distributed across the five bor-
oughs. In fact, the four outer boroughs are represented among new
clients at least in proportion to their relative percentage of live
AIDS cases. See attachment C.

Looking specifically ——

Mr. Suays. Dr. Gil, let me ask you a question. Your statement
is very important, I think I’m going to have you go through all of
it, but I just want to know how many pages you have left.

Dr. GIL. I can just jump——

Mr. SHAys. I want to know how many pages you have left.

Dr. Git. I think I have four or five pages.

Mr. Towns. Mr. Chairman, the entire statement is in the record.

Mr. SHays. Why don’t you take a minute and summarize and
then we'll get into some questions and anything in the end we
didn’t ask in the questions you need to put in the record, we'll have
you comment on that.

Dr. Git. Fine. Let me just say that the recommendations that we
have for this community that we think that are very, very impor-
tant——_

Mr. SHays. I think you should go through those recommenda-
tions.

Dr. Git. We have cited, of course, the increasing AIDS deaths
that we have experienced in New York City in the past 3 years and
that represents certainly a challenge, because as was mentioned
before by testimony of the Congressman, that basically it will re-
quire that the infrastructure of social services will need to be

as the life span of these individuals continue to grow.

I would like to make three specific recommendations. The first
one has to do with the Ryan White CARE Act. Let me say that
both Congress and Health Resources Services Administration have
today been extremely supportive of our work this year. Our title I
funding increased to $95 million from $92 million last year. This


Gwen Carter Testimony
HIV Prevention Alliance of New York City
Poge 2

comprehensive behavior change interventions; they will be delivered in community-
based settings; and they will be linked to proper medical services. For example, the
good news that is being heralded about new treatment options, from protease
inhibitors and the success of combination therapy, is of little consequence for
people living in poor and under served Brooklyn communities where access to basic
primary care services is woefully constrained. Sophisticated medical treatments
and access to new medical advances seem to be more of a privilege for a certain
class of individuals, who more often than not live outside of Brooklyn, and who are
frequently not Black or Latino.

This is the very issue that | would like to discuss today. Fundamentally, |
would like to direct my remarks to the role of the federal, state and local
governments in responding to HIV/AIDS in New York City’s Black community, with
specific emphasis on the role of community-based AIDS service providers rooted in
this community. Local epidemiological data underscore the need to focus attention
on the city’s African-American, Caribbean and African populations. Recent AIDS
surveillance data showed that although Blacks make up only 25% of the city’s
population, they represent 40% of all adult AIDS cases reported from April 1, 1995
to March 31, 1997. During this period, Blacks accounted for the highest proportion

of adult male and female cases among racial/ethnic groups, at 37% and 53%


102

Gwen Carter Testimony
HIV Prevention Alliance of New York City
Page 7

community norms and behavior around sex and drug taking.

The mission of HPA is to do just this. With funding from the Centers for
Disease Control and Prevention, the New York State Department of Health, AIDS
Institute, was able to enter into a contract with the Harlem Directors Group to
develop the collaboration of twelve Black organizations - now called the HIV
Prevention Alliance of New York City. Consistent with the notion of stimulating
partnership between government agencies and community based providers,
the New York State Department of Health's AIDS Institute played a critical role in
moving HPA from a concept to reality, by drawing down federal resources to

support a local need in a new and innovative way.

As a consortium of twelve organizations, HPA will undertake three activities
to address the capacity building needs of its member organizations. These steps
are organizational needs assessment of each agency; a strategic planning process
to develop long range goals and objectives for collectively addressing the epidemic
in the city's Black community; and the development of an evaluation plan to
determine the viability of the model and whether it can be replicated for other at-
risk communities.

Based on the outcome of the organizational development needs assessment
of each agency, technical assistance will be provided to each to address identified

needs. This process will help us to better define organizational and community


118

born immigrants with AIDS, Haitians constitute 71 percent, so it’s
a very large number. Yet when the first allocation of Ryan White
funding, not one Haitian agency got refunded for case management
services. There were four programs, not one got refunded.

After some advocacy efforts, one agency said OK, they will get re-
funded, but for the most part most of us have not been refunded
and I’m very concerned about that, because a lot of people are
going to suffer.

{The prepared statement of Ms. Kersaint follows:]


65

Jules Levin
Executive Director, National AIDS Treatment Advocacy Project (NATAP)
72 Orange Street #3C
Brooklyn, New York 11201
ph: 718 624-8541, fx: 718 624-8399

I was born and raised in New York City where I received my undergraduate degree from
New York University in 1971. | spent several years in graduate degree programs for
law and business and worked in several different fields of business including securities
trading and real estate. | have been married to my wife Elissa for 15 years and found out
that | am HIV positive about 10 years ago. | have been taking a 4-drug regimen for the
past 18 months and it has been successful to date.

There are two main missions tor NATAP: (1) advocacy for people with HIV with drug
companies, the FDA, the NIH and other governmental entities; | frequently meet with
drug companies to consult about planning drug development including clinical trials; (2)
dissemination of HIV treatment information and education about treatment,

‘About 6 years ago | merely happened to become involved in AIDS treatment advocacy. My
initial involvement, which lasted about 1 year, was to organize efforts on a national
scale to lobby the manufactuers of protease inhibitors to provide drug to individuals in
desperate need prior to FDA approval. This type of drug supply is officially called
Expanded Access. Merck and Abbott were unwilling to offer expanded access programs so
we had to negotiate with them.

‘Subsequently, upon realizing the importance of treatment education unique to this new
era of treating HIV with the availability of protease inhibitors, | decided to focus on
treatment education. | founded NATAP and we were the first to conduct treatment
‘education forums in 1996 on protease inhibitors in New York City and Los Angeles. The
size of the crowds registering for our forums were unprecedented. in each of these first
two forums about 1,000 people registered. NATAP continued to develop. | started a
newsletter for which | do all the writing and was one of the first to conduct treatment
education through a web site on the internet. | continued conducting free treatment
seminars for the community and large crowds continued to attend. In the last 15 months,
NATAP has increased from 1 employee (me) to 4 and we conducted 3 very well attended
important forums in 1997, At each of our forums | select topics that are the most
cutting edge for treatment. We bring in some of the most knowledgable scientists to
discuss these issues, Usually we prepare reproductions of the discussions and distribute
them by mail and through our web site.

Most of our forums are conducted at New York University Medical Center as they
generously assist NATAP in holding the events. In May 1997, our treatment forum for
the community drew 800 registrants. Usually a wide variety of individuals attend our
forums including doctors, researchers, scientists, patients, nurses, etc. in October
1997 we conducted two large forums. For the first time we conducted a forum strictly
for case managers trom community AIDS organizations in New York City. Amazingly,
‘over 600 people attended. In that same month we held a forum at NYU Medical Center on
resistance and cross resistance to HIV drugs tor which 500 people attended. In January


7

additional one-to-one peer mentoring. Servi wit e

of the parent. This is a critical part of this therapeutic intervention.

Currently, Evergreen is the only agency that provides case management services for the

infected and affected children. Unfortunately, the systems set up to protect and aid these
children often do not adequately respond to their needs. The role of the case manager is

10 go into the schools, courts, clinics and other state agencies and advocate for the basic
academic, psychological, legal and health needs of these children.

The Evergreen Network, Inc. fills a service gap by providing the majority of psychosocial
services in the Greater Bridgeport Area as well as case management. Evergreen, through
the help of professional therapists and over 150 community volunteers, provides practical
and accurate information about local services available, as well as step-by-step guidance
in bow to access those services. More importantly, by cresting separate support groups
for those whose lives have been permaneatly altered by HIV/AIDS, Evergreen helps to
combat the isolation and searing stigma that still surrounds this disease.

The psychosocial support groups that are now being offered include:
* aweekly evening group for HIV+ men and women.
* a weekly luncheon group for HIV+ women.

* a weekly “Sunshine Kids” group for children who have a family member infected by
HIV-ALDS.

* a monthly group for grandparents raising children orphaned by AIDS

* a monthly group for caretakers raising HIV- children.

* a monthly group for significant others of persens with HIV/AIDS

* a quarterly Bereavement Group for anyone who has experienced the death of
significant person in their life due to AIDS.

‘These support groups are provided free of charge. Since transportation to and from these

groups is often prohibitive and unavaileble to ms participants, The Evergreen Network

bas developed # voucher program with a local taxi company to provide regular, safe and

dependable transportation.

Cate Manazement - and more

In addition to support group services, each client receives assistance in navigating the

complicated systems of the courts, medical providers and the departments of Social

Security, State Health, State Housing and Income Maintenance. Cliemts are also
encouraged to participate in a weekly G.E.D. tutoring program that assists them in geting


16

Second. the health care delivery system must be capable of educating patients about the
availability of the drugs. and of providing the primary and ongoing medical care required to
assess patients’ need for the drugs. to work with patients to establish a medication routine they
can follow, and to monitor the impact of medications and assess the need for changes in the
medical regimen over time. I would like first to discuss the publicly-financed systems that are in
place in New York City. largely supported by federal funding. to make these medications and
accompanying health care available to the HIV-infected population. Then I would like to share
the data we have on the degree to which we are succeeding in establishing widespread access to
these medications. particularly across racial and ethnic communities in the city.

While AIDS atfects people across the socio-economic spectrum in New York City. it has
hhad the heaviest impact on low income individuals. and so. not surprisingly. the largest source of
payment for HIV care is the Medicaid program. The “Changing Environment Study” done in
the Fall of 1997 for the New York Ryan White Planning Council. estimated that between 55 and
80 percent of HIV-infected individuals in New York City rely on Medicaid for their health care.
New York State's Medicaid program provides enhanced reimbursement rates for HIV primary
medical care. and a broad network of institutional and individual providers in New York City
participate in the Medicaid program. The Medicaid program also has a drug formulary that
covers every FDA-approved anti-retroviral treatment for HIV infection.

The Medicaid program is supplemented by services supported by the Ryan White CARE
Act. Ryan White is designed to complement entitlement programs by filling gaps in critical

services. and that is precisely the role it plays in New York City. Title | of the Ryan White


Gwen Carter Testimony
HIV Prevention Alliance of New York City

Page 4

shared the same belief that ours were just the type of organizations that needed to
be supported by not only public, but also private funding, to combat the
transmission of HIV in their communities. HPA has five member organizations that
are based in Brooklyn. In addition to Life Force, those agencies are Caribbean
Women’s Health Association, Haitian Women’s Program, Greater Brownsville Youth
Agency and People of Color in Crisis. These organization all deliver HIV prevention
strategies that are created and delivered in community-based settings whose
leadership and staff reflect the target populations.

When we first came together, the co:

ion partners were gravely concerned
that the exclusion of agencies like ours from federal HIV prevention funding and
from other city, state and federal resources, would bode poorly for HIV prevention
and care efforts in African-American communities. Essentially the concern was
this: no matter what the development, from an HIV vaccine, more advancements in
interrupting maternal-pediatric HIV transmission, combination drug therapies to
prolong and improve the quality of life for people with AIDS and HIV infection or
syringe exchange programs, the strategy for reaching the most heavily impacted
communities must necessarily involve the front-line AIDS service providers in
organizations like ours. Significant developments are progressing without serious
thought about or consideration of the role of our type of organizations in the fight

against HIV/AIDS in African-American communities. What is certain is that pubic


21

place even greater strains on our health care and social support systems than they are currently
experiencing. [am sure you will hear later today from community-based providers who will tell
you that their resources for providing all the services that people with HIV need are already fully
committed. The number of people with AIDS in New York City has already been growing
steadily over the past fifteen years. and now we expect that those with AIDS -- and many with

HIV infection -- will be living longer as it becomes a more chronic. treatable condition. We will

have to find. somewhere. the resources to provide the services they need.

A second challenge created by these new therapies has to do with medical compliance.
As I mentioned. these drugs are not easy to take. Imagine swallowing 16 to 24 pills a day for the
rest of your life. on a regular 8- or 12-hour rotation, some of which have serious side effects.
The temptation to quit, or at least to cheat a little, can be enormous. but it is also very dangerous.

HIV is not a forgiving virus, and skipping doses of anti-retroviral therapy can result in drug

resistance fairly quickly. Especially for individuals who are dealing simultaneously with
poverty. housing problems. drug abuse. and other ills, adding a complex HIV medical regimen to
a chaotic life may simply be overwhelming. Even for middle-class individuals with steady
incomes. combination therapy is not an appealing prospect. We will need to work creatively to
develop new. integrated service models to support people in remaining compliant to their
treatment, so that they can derive the optimum benefit from these drugs.

Third. while there will be more people needing HIV-related services, the services that
many of them will need are likely to be different. We are seeing that these drugs are either

halting the progression of the disease for many people. or are actually reversing it. Many of our


50

tion of people living with HIV and AIDS. One of the ways is to im-
plement innovative methods of increasing access to needle services.

As such, on behalf of the East New York/Brownsville HIV CARE
network, I humbly request that when you, Congressman Shays and
Congressman Towns, return to your colleagues in the subcommit-
tee, too, that you encourage increasing the amount of money allo-
cated for Ryan White and HIV/AIDS prevention, insuring that com-
munities with the highest need also have the greatest access to re-

sources.

Additionally, ensuring that the Secretary of Health and Human
Services maintains the authority to lift the ban on needle ex-
¢ je.

Thank you once again for allowing me to address you on this
yery, (important issue, due to the fact of people living with HIV and

(The prepared statement of Ms. Moore follows:]


95

proving the organizational capacity of black AIDS service organiza-
tions to better deliver HIV prevention services. However, we be-
lieve the model will prove instructive for coordinating care and
treatment programs not only in Brooklyn, but also citywide. Thank

you.
(The prepared statement of Ms. Carter follows:]


33

ATTACHMENT F
Table 6: Use of Combination Antiretroviral Therapies by Race/Ethnicity

CHAIN Interviews Conducted Between January 1996 and June 1996

Type of Antiretroviral Therapy White Black __Latino
(N=) (68) (202) (132)

None 34% 5% 46%
Monotherapy 10% 19% 18%
2 drug Combination without a 26% 1% 25%
Protease Inhibitor

1 or 2 Drug Combination with a P.I. M% % %
3+ Drug Combination with a P.I. 22% % 8%
Total 100% 100% 100%

Pearson Chi Square (8)= 38.5 p<.001

CHAIN Interviews Conducted between July 1996 to December 1996

Type of Antiretroviral Therapy White Black Latino
(N=) (38) (142) (80)

None 34% 50% 28%
Monotherapy 5% 8% 14%
2 Drug Combination Therapy without 24% 2% 32%
a Protease Inhibitor

1 or 2 Drug Combination with a P.I. 5% 6% 5%
3+ Combination with a P. 1. 32% 14% 23%
Total 100% 100% 100%

Pearson Chi Square (8)=17_ p<.05

FAP


133

Page 3, Testimony

transmission among special populations combined with a shocking paucity of HIV-related
services based in Brooklyn was confirmed in a recent study commissioned by the New
York City Department of Health.’ Citing only a few of the many examples, Bushwick has
the highest number of people coinfected with HIV and TB in New York City; East New
York has the highest number women infected with HIV; Bedford-Stuyvesant and Bushwick,
the highest need for custody planning legal and social services; Williamsburg and
Bushwick, the highest number of Latino/as living with HIV; East New York, Brownsville and
Bedford-Stuyvesant the highest numbers of African-Americans living with HIV;
Williamsburg, the highest number of children infected with HIV; and Brownsville has the
highest need for client advocacy services in the City of New York.

Brooklyn will have 16,000 AIDS orphans in 2001 ~- more than half the number
predicted for all of New York City. Clearly, these poor communities of very high need must
have access to medical care and HIV-related services. Because of cultural and linguistic
considerations, the fear of traveling much beyond neighborhood boundaries, and the fear
associated with HIV-status disclosure, people living with HIV and AIDS in these
communities are much more likely to access neighborhood services than services offered
in unfamiliar surroundings long distances from home.

Yet, recent Ryan White Title | funding decisions resulted in 75% of the locally based
care and services being taken out of Brooklyn communities and placed in large City-wide
providers of services located, for the most part, in Lower Manhattan. Although many
examples can be provided as to the devastating affect this will have on Brooklyn
‘communities, one serves as very compelling.

In Brownsville, a community of the highest needs for virtually every HIV related
service, and with the highest numbers of African-Americans and women living with AIDS,
a food and nutrition program has been serving hot meals in a congregate setting for five
years. Although designed and funded to serve 50 people living with HIV for each meal,
as many as 95 - 100 were served each meal. At each mealtime, guest speakers provided

" HIGH NEEDS INDEX FOR RYAN WHITE TITLE | PRIORITY SERVICES.


Vi

CARE Act. which provides funding to New York City and many other localities nationally. pays
for medical care for individuals who do not have private insurance and do not qualify for
Medicaid. Under tederal law. the Ryan White Planning Council determines how the Title |
money coming to New York City is allocated. In recognition of the increasing prominence of
medical care for HIV-infected New Yorkers. the Council this year has allocated almost $40
million to drug reimbursement and outpatient medical care. more than ever before. The Council
also allocated almost $1 million for treatment education and support programs. in recognition of
the challenges for HIV patients in understanding their treatment options and remaining adherent
to therapy.

The bulk of Title I money for medications and health care supports two critical programs
Like every state. New York has an AIDS Drug Assistance Program. or ADAP, that provides
medications for uninsured and underinsured people with HIV. Unlike any other state. however.
New York has also created a unique program called ADAP Plus. which provides access to
primary care services and laboratory tests for disease management. By filling the gap between
private insurance and Medicaid. these programs ensure that no New Yorker is without access to
HIV care and anti-retroviral medications for reasons of financial need. New York State and New
York City have operated in a close partnership since the inception of the Ryan White program to
make sure that these programs (together with the third program for the uninsured. a home care

program) remain adequately funded. and available to all who need them.



61

to the needs of that person, and comprehensive enough in scope to support success of
therapy.

A number of smaller adherence projects are in development but this problem must be
well recognized and addressed to prevent treatment failure due to this one cause. A
comprehensive effort is required to address this crucial problem which broadly impedes
successful treatment.

Usually, a person fails a treatment regimen because resistance develops to the protease
inhibitor. Non-adherence can cause resistance to drugs to develop. Once resistance to a
protease inhibitor occurs the person is cross resistant to other protease inhibitors. The
person is not likely to benefit well from a next regimen or protease inhibitor. This is
why it is so crucial that doctors and patients be so well educated about choosing
treatments. Improper treatment regimen design can cause permanant treatment failure.
Non-compliant behavior such as missing doses, not taking full doses, or eating when
taking certaindrugs for which you are not supposed to eat with also is a major cause for
resistance to drugs.

| think we can do something about these problems of below standard care for HIV and
non-adherence. We can improve medical care and adherence by first fully recognizing
the problem, having the resolution to improve the situation, and then implementing
programs to accomplish the goals. These problems, however, need immediate attention.
We have already had too many treatment failures due to these problems. It is important
to remember the consequences of treatment failure. They can lead to declining health,
death and additional transmission of HIV. These consequences also effect our economy.
Death and declining heath prevents young capable people from working and contributing
to our overall economy.

The latest data from the CDC (Center for Disease Control) indicate that the incidence of
HIV in minority communities is a major driving force in the overall rate of incidence for
HIV. Special attention needs to be paid to the unique needs of these communities in order
to stem the epidemic of AIDS. Some of the problems include inadequate housing, substance
abuse treatment, inadequate HIV treatment education, inadequate medical care, and other
‘special needs.

People with HIV are unique from individuals with any other disease. They are the only
ones empowered as much as they are. There is a history and tradition for people with HIV
to have this empowerment. Many of us have traditionally directed a large part of our own
treatment and treatment education. It is this movement that has played a large role in
improving governmental activities and funding with regards to HIV. This is one of the
important reasons that direct consumer education is key to successful treatment.
Traditionally such empowerment has existed in the gay white community, but it is
inadequate in minority communities. It is important to extend this empowerment to the
minority communities through treatment education.

What can be done to address these problems?
The American Medical Association or Congress can require that like cancer and other
specialty areas of medicine, physicians who treat HIV should be required to meet certain


Roomy

130

= Grerantes husith care to all people whe are infected with BIV. Government
‘suustasgure that Medicaid, AIDS Drug Auistanco Programs, and private health

‘with the new Public Health Service's HIV trestmest guidelines,
+ Expand HIV prevention efforts and target high-risk populations. HIV

prevention is our only weapon against this epidemic. Yet, for most of the
programs have hot targeted the

injection
Programs, and the cost of this ignorance is stark and shameful,

+ Promote HIV testing. Since HIV testing is the enacial iret step for an infected
individual to begin taking charge of hin/her health, gaverunent st al Levels must

+ Enact federal and state 1s for medical records.
Although public health data, such as ALDS and HIV surveillance, aro by

Tints pets hea iron bo el the wn comin

Summary

‘Recognizing the important rdle HIV survsilience can play in our national strategy against the
epidemic, GMC strongly utgee New York to implement HIV surveillance. GMHIC calls for 2
compassionate and considered process for implementing HIV rurveiliance GMHC believes this
‘ig an opportunity for all communities to make stronger their commitments in battling this heath:
‘crisis, and calls on all levels of governmont to increase their funding and commitment.

716 a50 4542 03-20-98 o5:15rK Po13 H37


114

rovided these new medications, but because there are fewer num-
bers of children infected than adults, they’re not willing to imple-
ment the change in medication dosage for children and we really
need to push the drug companies so that these medications are
truly available for the children.
ir. SHAYS. What I appreciate you doing is if you would write the
subcommittee a short, one page or two-page letter, what we'll do
is we will pursue that issue. One of the powers this subcommittee
has is to oversee the FDA, CDC, Institutes of Health and some-
times we accomplish as much by a nice letter suggesting that we're
happy to have a hearing if they don’t think it’s very important.
That seems to have an impact. Any other comments, Dr. Durand,
you?

Dr. DURAND. Yes, actually, the previous panel stated that there
has been funding directed toward Brooklyn and the outer boroughs.
However, I want to raise the issue of the reality of the funding, like
when they give funding for programs without taking into account
the reality of the people we are serving, it kind of defeats the pur-

pose.

If you have funds to service women and you don’t have any fund-
ing to provide child care or token reimbursement, most of the time
you have one or two staff funded to work on that project, and
you’re servicing hundreds of people, how efficient can you be in
reaching any population and hopefully having them come back?

women cannot come because they cannot find somebody to

take care of their kids. I mean, when you weigh it, they're not

oing to come if you cannot have somebody to look after their chil-

n, or if they have to pay two fare zones to come to your pro-

gram. No matter how much they like a program, if they don’t have
the $6 for neportation they’re not going to come.

Mr. Says. Mr. Craig.

Mr. Craic. I'd like to add on something that Dr. Levin said, espe-
cially when it comes to the drug medications. You can take an arm-
load of medication for this virus and it won’t do a hill of beans un-
less your mental health is in tune with that medication. I find that,
I know for me in particular, until I decided, until I got straight
mentally, the medicines would have never worked. In talking to my
peers and talking to people on the street, they're under the impres-
sion, well, if I get the virus I can take this medication: and I'll get
better. They don’t know anything about the side effects, and there
are a whole lot of side effects, a host of side effects, too many even
to name and it’s more than just the normal ones that you see on
the boxes.

Mr. Suays. It’s your point that out in the street people are be-
coming less concerned about HIV and AIDS because they think
now there are drugs that might meet their needs and sustain them
if they become infected?

Mr. Craic. Yes, that part, and they also don’t know anything
about the mental stress that taking the medication can put you
through. Once you find out you’re HIV positive, there are a lot of
mind games your head plays with that. Until you get that straight,
medication won't work.

Mr. Suays. Ms. Carter, do you have any issue that the previous
panel——


116

them in other areas, and the quality of service goes up. They take
some clients for granted and others don’t.

So if you could provide that to me in writing, I'll set up a meet-
ing with you and the AIDS people and the chairman of the health
committee and we'll try to get this into the record. That’s the rea-
son why I’m down here this morning. Congressman Towns has in-
vited me to a meeting and I got advance word from my staff on
this, and I said I'll make it down here because this is a serious
issue. People think it doesn’t affect you; it affects us all.

You go to the hospital, there’s confusion, and what confusion
with the AIDS virus. If you’re not gay or lesbian, you pick it up
anyway, so we're all at risk. Am ly is at risk. This disease does
not show itself for maybe 5 to 10 years, so you can have it today
and not realize you have it for another few years. So I think this
is one of the greatest dangers that we face today, and I think that
again, Chairman Shays, I commend you for coming here today and
focusing our attention on this.

Mr. SHays. Thank you. This is the second hearing we’ve had here
for this very reason.

Let me do this, I’m sure it’s more than all of you can say. I am
going to ask that we clear this table. And I'll wait. I would like
those who are in the audience to stand up if they would like to
speak because it’s easier for me to count. I have 10. OK, let’s do
this. My staff is going to kill me, because they say if I allow you
to sit down with the mic we'll never end this, but I would like to
have you come and sit down and I would like whoever is extra to
sit just beyond, we'll see how many we have, and could we confine
it to those who are here. Let me try to figure out how much time
we have here.

Here’s what we're going to do. We’re going to have everyone sign
in and start at that end. it P'd like is your full name. We’re not
swearing you in, but we have to have your name for the record be-
cause you will be on the transcript. The only difference is that you
weren't sworn in, and I'll want you to give your name and I want
you to give what your background might be and I am going to limit
you to 2 minutes.

We're not going to ask questions, we're going to hear you, and
so two politicians up here are going to shut up, and we're going to
hear you. Two minutes. Can we do the timing for 2 minutes? And
I'm going to hold you to the 2 minutes. I was a big fraud previous,
but I’m going to be tough. Because we do have to be other places
as well. So we're going to start this way. Your name, your concern
and your comment. You’ve got 2 minutes.

Ms. CRANDLES. My name is Sheila Crandles, I’m a social worker
at SUNY-Downstate that Antonia Moore mentioned before. My
statement is that I have ran two title I programs since 1991, I
think, and 1992. I’m a little nervous.

Mr. Suays. Don’t be nervous.

Ms. CRANDLES. The two programs are a supportive counseling
program for adults with HIV needs and a Program, called Project
Hope. We work with teens whose parents are HIV. We work more
with the kids before their parents get sick and die to help the child
with the transition and to help the child with all of their feelings,


4

Perhaps the most significant news is the fact that we are seeing
the Kind of financial support for AIDS research and treatment that
we have desperately fought for as the AIDS crisis deepened. This

ear funding for the Ryan White CARE Act has been increased to
$115 billion. This funding represents more than mere dollars. It
shows that AIDS prevention and treatment has finally made it on
to the radar screens of those who have the power to direct re-
sources for this problem.

Yet in the midst of all this hopeful information, we will hear
from several of today’s witnesses that not every community can
share in the good news. While survival rates are increasing, alarm-
ing trends have surfaced. HIV infection in America has become a
disease of poor minorities. Last year 57 percent of all AIDS pa-
tients were non-white, up from 40 percent just 10 years ago. These
patients have less access to quality health care, lower levels of edu-
cation, and far less political clout than people infected earlier in
this epidemic. In my District alone, Bushwick accounted for nearly
a third of all the new AIDS cases reported in New York in 1994.
That neighborhood ranks first in AIDS cases among Hispanics and
first in cases among women.

Let me take a minute to put a human face on these alarming
statistics. At St. Barbara’s Catholic Church in my District, 245 fu-
nerals were held in 1994. Of these, 181 were for young Latinos and
Latinas who had died of AIDS. This reality is deeply alarming and
troubling to me and presents an important charge to those charged
with addressing the Fealth needs of people currently infected with
HIV/AIDS.

A number of factors, however, complicate our ability to treat pa-
tients from disadvantaged communities. One of these is that most
current therapies are highly complicated and must be strictly fol-
lowed. Some treatment requires taking four, five and even six
drugs at a time, and of course, these medicines are very expensive.

We have to address these special needs on two fronts. First, we
must make effective, cutting edge drugs available wherever they
are needed and then we must direct funding to the kinds of organi-
zations that will be best suited to insure that those drugs are ad-
ministered properly and effectively.

For these reasons, it is extremely important that we target our
funding to organizations that can best deliver such treatment to
poor minority communities. These organizations have the strongest
ties to the communities they serve. They have an established net-
work of local resources to draw from. They understand the special
health and social service needs of the community. They are best po-
sitioned to address the challenges presented by the makeup of the
communities’ population.

T have had the opportunity to see firsthand how effective commu-
nity groups can be in delivering necessary services. In my district,
T have been working with groups like Musica Against Drugs, which
is one of the few community groups receiving training on how to
successfully conduct community outreach programs. In addition,
Musica has been using non-traditional approaches to combat sub-
stance abuse and provide basic services to patients with HIV/AIDS.

As today’s witness will explain, these groups have been short-
changed and the communities they are serving are suffering as a


93

Mr. SHays. Can I ask you in your testimony, if you have to go
to Manhattan for some services?

Mr. CraiG. My services that I go to are in Brooklyn. I feel that
all the best services are in Manhattan. I don’t feel I should go to
Manhattan to get adequate services.

Mr. SHays. The services are somewhat essential, but it’s your
feeling the better programs are in this community, is that——

Mr. Craic. Yes.

Mr. Suays. Thank you for your testimony.

Mr. LEVIN. Could I just comment on this?

Mr. Suays. Yes, very quickly.

Mr. LEVIN. Funding has been so disproportionate for so long, for
Manhattan-based facilities, that even if you increase funding for
Brooklyn, you need a more proportional increase to make up for

it.

Mr. Suays. I understand that. I believe the city believes they are
more proportional, but your point is that there’s a bit of makeup
needed.

Mr. Levin. A big makeup. Years.

Mr. Suays. Thank you for sharing that.

Ms. Carter.

Ms. CarTER. Good morning.

Mr. SHAYS. Good morning. I’m going to have you talk a little
louder here. I want to make sure that we hear you. And it’s impor-
tant for others to hear you as well.

Ms. CaRTER. Thank you, Congressman Towns, Chairman Shays.
Thank you for the opportunity to testify before the subcommittee.

It’s heartening that you have recognized the importance of com-
ing to Brooklyn to hear from some of us who are on the front line
in the fight against HIV in the city that has the dubious distinction
of being the epicenter of the AIDS epidemic.

I’m Gwen Carter, executive director of Life Force for Fighting
AIDS, Inc., a community-based organization located in Brooklyn
and serving residents throughout the borough. The primary popu-
lations that we target are HIV infected and affected women and
their families, in other words, everyone. Life Force is one of the
first organizations in the country to train and employ HIV positive
women as peer outreach workers and educators. Most of our peer
educators are black and Latina and they live and work in the
Brooklyn communities where they battle to protect other women
like themselves from becoming HIV infected.

Although peer-delivered prevention services, linked to concrete
supportive services, are at the foundation of Life Force’s model of
service delivery. We know that fostering long-term behavior change
in at-risk populations requires more than just the provision of in-
formation alone. Indeed, effective prevention strategies across all
ethnic populations, including women, substance users or men who
have sex with men, require that a continuum of prevention services
be available.

Effective HIV prevention strategies must include HIV counseling
and testing, and comprehensive behavior change interventions.
They will be delivered in community-based settings and they will
be linked to roper medical services. For example, the good news
that is being Fes out about new treatment options——


38

Mr. Towns. Mr. Chairman, I had an Afro.

And what would happen is that you would have these citywide
programs that would come to the Board of Estimate and finally I
started doing my own research, and I found out that these citywide
programs, inasmuch as they were citywide, the programs could
never cross the bridge, the services could never get across the
Brooklyn Bridge and I’m afraid that this might be happening now,
and that’s the reason why we see that the numbers in Brooklyn are
much higher than they are in other places, and I just want you to
respond to that.

it was a joint question between Nydia Velazquez and I.

Dr. Git. Congressman Towns and Mr. Chairman, I want to know
whether you can allow me to ask Associate Commissioner David
Hansell to join me here.

Mr. Suays. Let me say this, I'll be swearing you in, if there’s
anyone else. I’m happy to do this, but is there anyone else, Mr.
Cruz, do you have someone who will be joining you?

Mr. Cruz. Dr. Chin-Loy.

[Witnesses sworn.]

Mr. SHAYS. We're going to need to help the transcriber, because
this is transcribed, if you will be able to leave cards, so we can
make sure of the proper spellings of your names and titles. Identify
yourself for the record?

Mr. HANSELL. I’m David Hansell, associate commissioner for HIV
Services, New York City Health Department.

And Congressman Towns, it’s a very important question, one
that we’re very concerned about, I’m glad to have the opportunity
to respond to it. And let me tell you what we have done to date,
particularly in the context of the Ryan White program, because
that’s the largest source of funding that we have for community-
based organizations.

Most of the Ryan White funding that we receive from the Federal
Government goes out directly to community-based organizations
around the city and as you know, we have just completed a redis-
tribution of that funding under the direction of the Ryan White
Planning Council, because of the structure of that P ‘am, as Con-

s has created it, in which the Planning Council, which is broad-
ly representative of organizations around the city, actually tells us
how to allocate the money across the various services that people
with HIV and AIDS need to receive.

The Planning Council directed us actually in late 1996 that be-
cause the epidemic had changed, because the distribution of the
epidemic across the city had d and the services that people
need had changed, it was time for us to look at whether the dis-
tribution of funding across the city was adequately reflecting the
needs of the epidemic, and in particular, the Planning Council told
us they wanted to look at three factors as we redistributed those
funds. They wanted to make sure the funds were appropriately tar-
geted to geographic communities of high need, to populations with
co-morbidity factors, like, for example, tuberculosis and homeless-
ness and poverty and mental illness that were most in need, and
that we give emphasis to locally based services within the commu-
nities where people needed them.


125

she has to go right back in, because there’s no medication for her
to get.

Mr. Says. In other words, all she gets is inside? She gets it in
the hospital?

Ms. Brown. She’s always committed.

Mr. SuHays. If she’s committed, she gets the service; if she’s out
on the street, she doesn’t. .

Ms. BROWN. She can’t even get the medication filled.

Mr. SHays. Thank you, Ms. Brown.

Ms. Brown. Thank you.

Ms. PETERKIN. Good afternoon, Mr. Shays, Mr. Towns. My name
is Betty Peterkin and I’m from Brookh ast New York. I’m also
here today because I’m a product of this disease. This disease is
very insidious as I know for myself. Recently the New Year’s came
and I started out in Brookdale Hospital. I almost lost my life, but
came out two times. I was introduced to this aftercare center right
here, Black Veterans, 210 Hart Street. I was diagnosed in 1991, so
I had lived with it. I had learned to accept it, but to be fully ac-
knowledged and have someone ‘acknowledged enough to give me
the education and thought and loving care; I didn’t get that until
I walked into 210 Hart Street. Just Wednesday, going to a meeting,
I heard that theyre going to close it down because there’s no
money to fund me and a lot of other people. There are people out
there like myself that want help. There are people out there that
could get help because they haven't been in to the right places yet
and it’s people like those that work with people like us, that want
us. Sometimes we can’t just want it ourselves and it takes a lot of
other people to help us. To be a living product of this insidious dis-
ease and to say, living in Brooklyn, that nobody has enough money
to furnish me, just to cultivate me and help me live with this dis-
ease, is very sad when they can send people to the moon, you
know, it’s real sad. I want to thank you.

Mr. Towns. Thank «you.

Mr. RoyaL. Mr. Chairman, my beloved friend, Congressman
Towns, Assemblyman Griffith, to all of you in this room. I hadn’t
intended to Speak. I intended to come as an observer, but I’m com-
pelled to speak.

First, quickly responding to your question, Congressman Towns,
is it going to go up or down? The answer, it’s going to go up. It’s
going to go up because of the socioeconomics in. the communities
that I travel in, which are mostly black folks and Latinos. Unem-
ployment is high, drug use is on the run, therefore it’s going to go
w

ip.

Assemblyman Griffith, who was very kind and gracious, said I
don’t want to go into name-calling, but I’m a preacher, I got to tell
it like it is. You can’t keep on giving money to the Gay Men’s Alli-
ance, which has not really seriously committed itself to the black
and Latino Population of New York City. They get all the money
and we in Brooklyn and Harlem and everywhere else, we got to
fight for scraps. That’s what’s going on in New York City. Now, we
talk about it, but nobody wants to ring it up front. I’m here to tell
you, it ought to be brought up front and I’m doing it today.

No. 2, very quickly, there is an attitude problem among the so-
called missionary folks that run programs which are ‘ically


100

Gwen Carter Testimony
HIV Prevention Alliance of New York City
Page 5

health strategies will fail in Black communities unless respected community
representatives are engaged in the design and implementation of new programs.
Ensuring that Black community-based organizations not only have a voice in policy
development, but that they also have the capacity to provide quality services, is the
reason that HPA came together. Let me be clear. This is no easy task. It involves
careful coordination across all levels of government, and among governmental
agencies with varied responsibilities. Partnerships between the community and
public sectors must be crafted and sustained if we are to get a handle on the
epidemic in the most at-risk communities. Today's hearing is a monumental
undertaking, in that it speaks to the importance of coordinating a strategic response
among community, state and city providers to improve prevention, care and
treatment options in Brooklyn. Life Force participates in HPA because HPA offers a
model to stimulate just such an opportunity for coordination and partnership across
sectors. HPA focuses on improving the organizational capacity of Black AIDS
service organizations to better deliver HIV prevention services. However, we
believe the model will prove instructive for coordinating care and treatment
programs not only in Brooklyn, but also citywide.

| would like to spend the remainder of my time talking specifically about two
aspects of HPA, an example of a creative partnership between community and

government, aimed at reducing HIV transmission in the New York City’s Black


41

We know that the CDC is actually shortly going to be announc-
ing a new policy statement on that, and one of the issues I expect
that Congress will have to address, in the reauthorization of Ryan
White is whether the formula should continue to be based on AIDS
cases or on HIV cases, which is a more complete representation of
the epidemic and certainly if the direction is looking at HIV cases,
we'll have to make sure that New York City and New York State
are not disadvantaged by the fact that we don’t currently have that
information.

Mr. Cruz. Let me add something to this. The new movement
from the Federal Government is to use HIV reporting as a——

Mr. Towns. Can you hear him back here?

Mr. Cruz. The new direction from the Federal Government, all
the cases are that they will use as a new criteria HIV reporting.
Already 26 States in the Nation are using some type of reporting
for reporting to CDC. What would be the impact to New York
State? Well, the impact to New York already was felt this year, be-
cause we have had increased surveillance activity, we were able to
identify 2,300 cases that we had never identified previously and
that made us gain some money in this year’s award. However, in
coming years when other States are increasing HIV reporting, po-
tentially if we don’t have a system to capture HIV and that’s what
the J Federal Government is using, we could lose money. That’s the
reality.

Will we lose money or gain money? It depends on what is the
system that is actually used for Ryan White authorization, but
with the new treatment, the identification of HIV is critical. We
need to know where they are, so they can benefit from this treat-
ment and if they’re going to be used as a measuring activity to give
money, we need the resources.

Mr. Towns. Thank you very much. Mr. Chairman, I have no fur-
ther questions. I’d like to thank the witnesses and turn it back to
you.

Mr. SHays. Thank you very much. I’m trying to sort out the im-
plications of new treatment on long-term policy, and I’m also trying
to sort out what are the controversial issues that are still in play
and what new ones will come into play. For instance, one con-
troversial issue is needle exchange. Another issue is the cost of cer-
tain drugs and who therefore gets the benefit. Some simply are left
out. There’s another one that I’m struck with, and maybe you are
able to comment on this and maybe not, and that is that my sense
is that when you administer certain drugs, they develop, the re-

juirement on the side of the patient, someone with AIDS, is that

ey make sure they take the drugs, because if they take them par-
tially, what may develop is the consequence that they’ve developed
some immunity, but then they don’t carry it on and a stronger
strain is passed on to someone else. And the implications of that
are quite significant.

That would suggest that if someone isn’t going to abide by the
protocol and take the medicine, the drugs as they should, the ques-
tion is, how do we deal with that? Should they even be taking the
drug in the first place if they contribute to passing on the strain?
That is a controversial issue, I would think.