59

TESTIMONY BY
DR. NILSA GUTIERREZ
DIRECTOR, AIDS INSTITUTE
NEW YORK STATE DEPARTMENT OF HEALTH

BEFORE THE

HOUSE SUBCOMMITTEE ON HUMAN RESOURCES AND
INTERGOVERNMENTAL RELATIONS

MONDAY, JULY 17, 1995
BROOKLYN BOROUGH HALL
NEW YORK, NEW YORK


128

Lambda Independent Democrats Page 9
explode in communities of Color). The groups that | have mentioned earlier are not
emerging populations — they have emerged! Unfortunately, there are groups out there
which we are simply ignoring. One such group are women who have sex with women.
There is not much data on women to women transmission of HIV; however, we do
know that agencies are noting that a growing number of their female clients indicate
that they engage in sexual activity with other women. Similar to men, these women are
forced to travel outside of their communities to receive services sensitive to their needs
and concerns. As a result, projects must be developed providing information to women
who engage in sexual activity with other women but may not consider themselves at

tisk for HIV.

Too often the response to combatting the AIDS crisis has been to move on and put out
the next fire. Maybe the vision should involve keeping new fires from getting started.
When looking at AIDS in the 90s, Lambda strongly urges you to keep in mind that long-
range, innovative and courageous strategies must be developed serving all
communities. Lambda encourages government officials to take leadership in making
certain that reality-based HIV prevention strategies are introduced and supported
throughout the nation. And finally, the ultimate goal is to find a cure. Funds must be
continually channelled into research.

Information for the above was gathered from:

The Centers for Disease Control The New York City and State
Gay Men of African Descent Departments of Health
Gay Men's Health Crisis People of Color in Crisis

The New York AIDS Coalition


25

without health insurance. Therefore, minorities are more likely to
depend upon publicly funded services such as those funded by the
Ryan White CARE Act.

BARRIERS MAY LIMIT ACCESS

Providers and advocates told us about many barriers to access for
Hiv-infected individuals that are particularly difficult to
overcome. HIV-infected people who are substance abusers and
homeless have difficulty in seeking services because of the
dysfunctional nature of their lives. For women, lack of child care
limits the ability to make and keep appointments for HIV-related
services. Another problem in seeking services is the lack of
transportation. One provider said that transportation subsidies,
usually for bus fare, are provided to clients. However, some
clients, such as women with small children or persons with
disabilities, need other forms of transportation.

In some instances, the lack of knowledge about and lack of
motivation to seek services affect the extent to which people use
services. Providers said that some clients are seeking services
during the later stages of infection. HIV-infected people in some
cases do not seek services because of denial or ignorance of the
disease and a lack of trust of the medical community. Also
mentioned were cultural differences and language barriers that
limit access.

Several providers told us of individuals’ reluctance to obtain care
from a provider of a certain racial or ethnic group or who
primarily serves a different racial or ethnic group than that of
the person seeking services. Some minorities and women are
reluctant to obtain assistance from an organization that serves a
predominately white male clientele or that is perceived as a gay
white male organization.

Providers, advocates, and HIV-infected persons whom we contacted
acknowledge the benefits that the Ryan White CARE Act has made in
providing needed services to minorities, women, and substance
abusers. However, to help in overcoming barriers to care, they
also recognize the need for local outreach services to make HIV-
infected people aware of prevention, the availability of services,
and the need to seek medical attention early on. Such outreach
services can increase the likelihood that HIV-infected persons
receive needed services.

This concludes my prepared remarks. I would be pleased to respond
to any questions you might have.


COMMITTEE ON GOVERNMENT REFORM AND OVERSIGHT
WILLIAM F. CLINGER, JR., Pennsylvania, Chairman

BENJAMIN A. GILMAN, New York

DAN BURTON, Indiana

J. DENNIS HASTERT, Ilinois

CONSTANCE A. MORELLA, Maryland

CHRISTOPHER SHAYS, Connecticut

STEVEN SCHIFF, New Mexico

ILEANA ROS-LEHTINEN, Florida

WILLIAM H. ZELIFF, JR., New Hampshire

JOHN M. McHUGH, York

STEPHEN HORN,

JOHN L. MICA, Florida

PETER BLUTE, Massachusetts

THOMAS M. DAVIS, Virginia

DAVID M. McINTOSH, Indiana

JON D. FOX, Pennsylvania

RANDY TATE, Washington

DICK CHRYSLER, Michigan

GIL GUTKNECHT, Minnesota

MARK E. SOUDER, Indiana

WILLIAM J. MARTINI, New Jersey

JOE SCARBOROUGH, Florida

JOHN B. SHADEGG, Arizona

MICHAEL PATRICK FLANAGAN, Mlinois

CHARLES F. BASS, New Hampshire

STEVEN C. LATOURETTE, Ohio

MARSHALL “MARK” SANFORD, South
Carolina

ROBERT L. EHRLICH, JR., Maryland

CARDISS COLLINS, Illinois

HENRY A. WAXMAN, California

TOM LANTOS, California

ROBERT E. WISE, JR., West Virginia

MAJOR R. OWENS, New York

EDOLPHUS TOWNS, New York

JOHN M. SPRATT, JR., South Carvlina

LOUISE McINTOSH SLAUGHTER, New
York

PAUL E, KANJORSKI, Pennsylvania

GARY A. CONDIT, California

COLLIN C. PETERSON, Minnesota

KAREN L. THURMAN, Florida

CAROLYN B. MALONEY, New York

‘THOMAS M. BARRETT, Wisconsin

GENE TAYLOR, Mississippi

BARBARA-ROSE COLLINS, Michigan

ELEANOR HOLMES NORTON, District of
Columbia

JAMES P. MORAN, Virginia

GENE GREEN, Texas

CARRIE P. MEEK, Florida

CHAKA FATTAH, Pennsylvania

BERNARD SANDERS, Vermont
(Independent)

JAMES L. CLARKE, Staff Director
KEVIN SABO, General Counsel
JUDITH McCoy, Chief Clerk
Bub MYERS, Minority Staff Director

SUBCOMMITTEE ON HUMAN RESOURCES AND INTERGOVERNMENTAL RELATIONS
CHRISTOPHER SHAYS, Connecticut, Chairman

MARK E. SHOUDER, Indiana

STEVEN SCHIFF, New Mexico

CONSTANCE A. MORELLA, Maryland

THOMAS M. DAVIS, Virginia

DICK CHRYSLER, Michigan

WILLIAM J. MARTINI, New Jersey

JOE SCARBOROUGH, Florida

MARSHALL “MARK” SANFORD, South
Carolina

EDOLPHUS TOWNS, New York
TOM LANTOS, California

BERNARD SANDERS, Vermont (Ind.)
THOMAS M. BARRETT, Wisconsin
GENE GREEN, Texas

CHAKA FATTAH, Pennsylvania
HENRY A. WAXMAN, California

Ex OFFIcIo

WILLIAM F. CLINGER, JR., Pennsylvania

LAWRENCE J. HALLORAN, Staff

CARDISS COLLINS, Illinois
Director

Kate Hickey, Professional Staff Member
‘THOMAS M. Costa, Clerk
CHERYL. PHELPS, Minority Professional Staff

ap


119

Lambda Independent Democrats Page 5
week for him. After coming home last week, my roommate's physical appearance is
a shadow of what he was before entering the hospital two months ago. A physically
fit man, who spent constant hours in the gym, my roommate (my friend) has lost
incredible amounts of weight, his skin has taken on an ashen look, and the disease has

rendered his body weak.

In some ways my roommate is lucky. He has an extremely supportive family that cares
a great deal about him and a roommate who is a source of information for him
regarding HIV and AIDS issues. Unfortunately, many others aren't so lucky. Many Gay
men because of rampant homophobia are left without adequate family support and

access to adequate care.

Quite often we will hear from individuals that the AIDS epidemic has shifted in recent
years from Gay men to “new population groups of racial minorities and women." | am
here to testify for Lambda that while statistics may show that new infections are slowing
amongst the Gay men as a whole, cases continue to explode amongst Black and
Latino men who have sex with men. Ina recent CDC "Morbidity and Mortality Weekly
Report” it was reported that “since June 1981, three metropolitan statistic areas (MSAs)
(New York, Los Angeles, and San Francisco) have reported 27% of all AIDS cases
among MSMs (men who have sex with men). During the 5-year surveillance period,
rates of AIDS-Ot (opportunistic infections) increased 8%, 12%, and 7%, respectively,
(mid-1994 rates; 44.4, 34.9, and 127.7, respectively). In all three MSAs, the rate for


68

fected children, we must provide mental health and legal counsel-
ing because of issues of guardianship and placement.

‘inally, family members that can no longer work often jeopardize
their housing. They may not be able to get limited housing sub-
sidies, and therefore, homelessness often looms dangerously close
for most of them.

Ryan White funds are critical to the delivery of emergency serv-
ices. The funding is even more vital since the AIDS epidemic con-
tinues to shift to women and minority communities who have far
fewer resources available. To serve these communities, we must
continue to provide Ryan White services. The cost of not providing
HIV services is great—society will pay at some point—and the de-
livery of Ryan White funded services is cost-effective and compas-
sionate. Without this service, hundreds in Stamford would receive
no care at all and nationally more than I could count would receive
no services.

[The prepared statement of Mrs. Katz follows:]


79

ment of Health and Human Services ensure that current funding
for community-based HIV services be maintained and that the De-
partment continue to examine new ways to assist health care insti-
tutions in providing adequate care to those who are infected with

The need for HIV services cuts across gender, ethnicity and age.
In 1991 and 1992, there were more than 1,192 cases of adolescent
and adult AIDS diagnosed in northern Brooklyn alone, and almost
1,600 in central Brooklyn. In 1993, 382 babies were reported HIV
positive in both northern and central Brooklyn, and as of December
1998, there are almost 3,400 people living with AIDS in these com-
munities, a rate of more than 337 cases per 100,000 people and an
increase of almost 30 percent since 1989. At the Brooklyn Hospital
Center, HIV related conditions accounted for almost 1,000 of our
31,000 discharges in 1993 and more than 5 percent of our total pa-
tient days.

While the majority of these cases stem from injecting drug abuse,
many also represent young women who become infected from their
partners, and children who are born infected or become infected
through breast feeding. The mechanisms of transmission are pre-
ventable, even transmission from mother to child. But prevention
requires concerted efforts on the part of government, social service
agencies, health care institutions and providers, and individuals.
Many prevention efforts already in place, such as substance abuse
treatment centers, prenatal care programs, primary care centers
that teach safe sex and responsible behavior, are jeopardized by the
proposed Medicaid, Medicare and social service cuts.

Today, I have been asked to highlight for you the importance of
continued funding for pediatric AIDS services and for dental serv-
ices for HIV infected individuals. The Hospital Center’s experience
with providing dental care to HIV infected individuals and those at
risk for infection demonstrates the need for rethinking of the fund-
ing and structure of Federal reimbursement for dental services.

In 1992, the Hospital Center received funding from the National
Cancer Institute as part of a consortium of institutions located near
large Hispanic populations. The grant enabled us to undertake an
extensive telephone and community survey regardin diet and atti-
tudes about health care and cancer. The results of this study indi-
cate that the majority of Hispanics in northern and Central Brook-
lyn consume diets that are high in fat and sugar and low in fresh

‘uits and vegetables, a contributing factor in poor oral health.

Medicaid recipients and the uninsured as a group have poorer
oral health than the insured. For those with HIV, poor oral health
contributes to their decline and can hasten mortality. Like the pop-
ulation as a whole, many of the HIV infected individuals in our
service area do not have a primary care physician, let alone a den-
tist or regular dental care.

AIDS patients as a group suffer from a higher incidence of oral
disease. Many of the frst symptoms of AIDS show up first in the
mouth; thus, dentists are often the first to recognize the early
stages of AIDS at an at-risk individual. For this reason, it is espe-
cially important that dental services for those at risk, rather than
just for those who have already been diagnosed with HIV positive,


15

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128

SUPPORTIVE HOUSING:
A SOLUTION TO THE PROBLEM OF
SERVICE DELIVERY TO THE
HOMELESS POPULATION WITH AIDS

Testimony presented to the
U.S. Subcommittee on Human Resources and
Intergovernmental Relations

Presented by
Julie Sandorf, President
Corporation for Supportive Housing

At the Hearing on
“AIDS in the ‘90s: Services
Delivery to Emerging Populations”

July 17, 1995


134

V. The Corporation for Supportive Housing

The Corporation for Supportive Housing (CSH) is a national, non-profit
intermediary organization whose mission is to expand the quantity and quality of service-
supported permanent housing for individuals with special needs who are homeless and at
risk of becoming homeless. CSH focuses on and serves individuals with special needs
because they are the largest percentage of the homeless and at-risk population, and are the
most visibly and persistently poor. CSH was created in 1991 by three of America’s
leading foundations: the Pew Charitable Trusts, the Robert Wood Johnson Foundation,
and the Ford Foundation.


74

Mr. Suays. Thank you very much. I appreciate the audience giv-
ing me the opportunity to let my colleague have a little more time.
Let me ask first this general question: Did you all agree with the
presentation of the first panel? If you have any qualifications to the
presentation of the first panel, I would like to know.

Mr. Mougica. I do agree.

Mr. SHAYS. You do agree.

Mr. Mougica. Yes.

Mr. SHays. Do any of you disagree with what your colleagues on
the same panel have said or wish to emphasize something slightly
different?

Mr. Mogica. I do not have any disagreement.

Dr. GUTIERREZ. No, no.

Mr. SHays. Doctor, you said in the beginning that the African-
American population was 24 percent in the city and you said 23
percent—did I get that correct?

Dr. GUTIERREZ, Our data reflects New York State data; his is
New York City. So they are discussing 80 percent of the cases; we
are discussing total cases in the State.

Mr. SHays. It is interesting when you get into these numbers,
you are talking averages——

Dr. GUTIERREZ. Right.

Mr. Mouica. Right.

Mr. Suays {continuing}. And averages can be very different; I
mean we all have different shoe sizes and we cannot say that ev-
eryone wears a size 8. So clearly in New York City, but New York
State as well, what is being said here is you are affirming what is
being said here and quite strongly it seems to me.

Mr. Mouica. Correct.

Dr. GuttERREz. Absolutely. I think that the most important thing
is that it is not a problem of 1995. This was well-established in the
late 1980’s. The epidemic—tracking the epidemic in New York City
was essentially this same profile. It is the relative numbers over
time and the relative rates over time that is changing. So when
emerging is discussed, it means relative rates of change.

Similarly if you look at five communities and three boroughs you
will get five different profiles with respect to people affected and
how the problems manifest themselves. So once again, there is no
single formula to respond to very, very complex problems. And as
you know, infection of the gay community and within a family of
gay partners is a very different scenario than that of a family
where you have three generations of substance abuse and multiple
persons in each of those generations infected. The issue of perma-
nency planning foster care, guardianship, all that comes up in a
way that does not occur in other things. $ that is different.

Mr. Suays. In public life there are correct words to use and in-
correct words, and we do not refer to people who are HIV positive,
people with AIDS as victims, and it is an interesting dialog as to
why we do not, because we do not want them to think that they
cannot do something for themselves to deal with the crisis that is
facing them.

But Debra, your comment about when People do not have food
or housing, the fact that they are HIV, it becomes an extraor-
dinarily dominant issue, but it is not the issue of the moment. This


32

Mr. Chairman and Members of the committee, thank you for the opportunity to provide
testimony on behalf of the Department of Health and Human Services in addressing
“AIDS in the 90's; Services Delivery to Emerging Populations.” I am Dr. Eric Goosby,
Director of the Office of HIV/AIDS Policy within the Office of the Assistant Secretary
for Health and I am accompanied by Dr. Steven Bowen, the Director of the Ryan White
program at the Health Resources and Services Administration. We are here to discuss
the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990 and
its impact and potential for providing essential health care and support services for
individuals and communities affected by HIV disease. This program is a vital component
of the Public Health Service’s efor. :o combat the continuing HIV epidemic, and has
been a highly successful model of integrating Federal, State and local efforts to meet
pressing needs for accessible and appropriate care.

When the Ryan White CARE Act was passed by a bipartisan majority in Congress and
signed by President Bush five years ago, it was the first targeted Federal response to
address the urgent health care delivery needs resulting from the HIV epidemic. In some
urban areas, the health care crisis had reached emergency proportions, far exceeding the
ability of local health departments, emergency rooms, community-based providers and
hospitals to respond to the increasing need for care. Today, because of the Ryan White
CARE Act program, these cities are able to keep open the doors of community clinics
which offer hope and care to people living with AIDS, and to provide care at home
instead of in high cost hospitals. To people living with HIV/AIDS, the Ryan White
CARE Act program has been a lifeline of care and compassion--enabling them to live
longer, more productive lives while researchers continue the search for a cure to give
them back their futures.

n { the Epidemi

In terms of sheer numbers, the HIV epidemic remains one of the top public health
problems facing the nation today. AIDS is now the leading cause of death among

the ages of 25 to 44 years, representing a tremendous loss to society
iduals in their prime. Over 440,000 cases of AIDS have been reported
to the Centers for Disease Control and Prevention (CDC), and almost a quarter of a
million have died of AIDS since the first case was recognized 13 years ago. It is
estimated that approximately one million Americans carry the virus, with an estimated
minimum 43,000 new HIV infections expected annually by the CDC in the next few
years,

Numbers alone do not tell the whole story. The face of the epidemic continues to
change, increasingly affecting women, children, adolescents, minority groups and other
underserved populations. The spread of HIV among women has increased dramatically
and shows no signs of abating. Cases among women are increasing by roughly 17
percent a year, and growing numbers of women are contracting HIV through
heterosexual contact. In 1994, women accounted for 18 percent of the new cases among


103

P.O. Box 338

Fairfield, CT 06430
Tel.: (203) 255-7965
Fax: (203) 254-3337

Lucie McKinney, Chairman

Subcommittee on Human Resources and.
Intergovernmental Relations
“AID's in the 90's: Service Delivery to Emerging Populations”
Statement of Lucie C. McKinney
July 17, 1995

‘The Stewart B. McKinney Foundation, Inc. is a tax exempt organization,


39

AIDS cases. In FY 1994, the mean percentage of council members who were African
American was 25 percent; persons of Hispanic descent comprised 10 percent of planning
council membership (excluding Puerto Rico).

State consortia funded under Title I have also sought diverse representation from local
public health agencies and health care providers, bringing mental health and substance
abuse agencies together with social service agencies, community based organizations, and
people with HIV/AIDS. The vast majority (92%) of consortia reported they had
participated in the development of State HIV/AIDS plans, thereby ensuring a unified
and coordinated approach to services throughout the State.

Cost-Effectiveness of Care

Delivery of health care services to persons with HIV in the setting most appropriate to
their needs has been a goal within the Ryan White CARE Act. By emphasizing a
continuum of care services, Ryan White CARE Act grantees have been able to report
numerous examples of cost savings made possible through Ryan White CARE Act
funded activities. The following are examples of cost-effectiveness identified in local
programs:

Reno, Nevada: The Washoe County District Health Department's Early Intervention
Clinic funded under Title I1I(b) has a caseload of 225 to 275 HIV positive clients, An
analysis of calls received on the after-hours call line showed that nurses were able to
prevent 90 unnecessary emergency room visits by prescribing medications or arranging
for clinic visits the following day. This success rate so impressed two Reno hospitals that
they each provided $50,000 grants to the clinic in 1993 to support HIV-related direct
patient care.

Massachusetts: Massachusetts measured the rate of hospitalization, and the number of
at-home deaths versus in-hospital deaths as an indicator of the impact of Title II funds.
Acknowledging other variables, the State found that the average length of hospitalization
for people with AIDS decreased from 11.9 to 9.4 days pre- and post- implementation of
the Ryan White CARE Act. During this same period, the average length of stay for all
other diagnoses increased from 6.6 to 7.0 days. Hospital discharges of persons with
AIDS who had a referral to a home care agency increased from 8.9% to 13.7%. The
percentage of people with AIDS who have died at home has increased from 10.8% to
24%.

Georgia: A study within the State found that people with AIDS who received case
management lived significantly longer between HIV diagnosis and death, and had
significantly lower hospital-based charges.


64

of services to emerging HIV-infected populations. In particular,
we will ensure that the State's emerging plan for health care
financing addresses the uninsured population -- including the
homeless, immigrants, migrants and substance users, many of whom
are at high risk of HIV infection. Additional needs related to

emerging HIV positive populations include the following:

- ensuring there ie primary care service capacity to meet

ongoing caseload increases;

- improving access to drug treatment and harm reduction

programs;

- facilitating access to coordinated, family-centered care,

including linkages with hospitals and community-based

providers;

- improving outreach to high-need populations, including
pregnant women and substance abusers to link them to HIV

counseling, testing and care;

- ensuring access to housing for low-income and Medicaid-

eligible persons with HIV/AIDS; and

- expanding the availability of permanency planning services to
assist persons with HIV/AIDS and their families in making

legal arrangements for the care of surviving children and in


35

. f the Ryan White CARE
Increased Access to Care

‘The Ryan White CARE Act has made a broad range of health care and support services
available to increasing numbers of people with HIV/AIDS. By a conservative estimate,
cover 300,000 people with HIV disease have received health care and support services
under the Ryan White CARE Act since 1991. Many who would have died are now alive
and leading productive lives. An estimated 75,000 people with HIV disease have
received medications that prolong and improve the quality of their lives through the Title
II option for pharmaceuticals; more than 200,000 have received health care and support
services through coordinated consortias of care since 1991. Title III(b) grantees provide
primary medical care and other needed services to 40,000 people with or at risk for HIV
disease, and Title [V serves 11,900 HIV positive or affected women and children. The
following are examples of increased access to services in various community settings:

Houston: The number of patients being served by the Thomas Street Clinic has grown
from 765 in 1991 to more than 3,500 in 1994.

Kansas City: As the result of one year of Title J funding,the number of people in care
grew from 250 in late 1993 to over 1,100 in 1994, and the total number of physician visits
increased from 346 to 15,246 in that same period,

Chicago: The Chicago Department of Health’s Early Intervention Program has
increased five-fold in roughly two years, growing from 60 to over 527 the number of
people entering care between 1992 and 1994,

Philadelphia: The number of people receiving comprehensive care services was doubled
at five Public Health District health centers located in neighborhoods with the highest
incidence of HIV and the least number of residents with health insurance.

Ft. Lauderdale: The number of children receiving care through the Comprehensive
Pediatric AIDS Project grew from 70 in 1991 to an active caseload of over 400 in 1994,
for a total of 860 clients in three years.

Atlanta: The number of patients receiving outpatient primary care through Grady
Memorial Hospital, the only public hospital serving metropolitan Atlanta, grew from 969
adults and 166 children in 1991 to over 5,000 adults and 400 children in 1994,

Missouri: The Ryan White CARE Act funds enabled the State to develop through its
consortia a network of 116 primary care health professionals providing care to people
living in rural areas, It includes family practitioners, internists, infectious disease

lists, ophthalmologists, oncologists and psychiatrists. Uninsured patients are able

4


67

limited. To address this issue, the Stamford Program has been able
to arrange an account with a taxi company, purchase bus tokens,
and acquire car seats for all HIV case managers’ cars. When trans-
porting women with HIV infection to services, one must take into
account that young children will also often be present.

The dramatic increase in HIV infection in women has and will
continue to significantly impact on the rates of pediatric AIDS due
to perinatal transmission. Ryan White funds are used in Stamford
to support our first Pediatric AIDS Care Program located at Stam-
ford Hospital. HIV infected children in Stamford can now receive
their specialty care near their home where previously they had to
travel to New York or New Haven.

For families, the burden of traveling at least 2 hours roundtrip
to get their HIV infected children medical specialty care has now
become unnecessary and the local availability of this care has in-
creased medical compliance. In addition to medical care, the Stam-
ford Ryan White Program offers both HIV case management and
mental health services at the same location and at the same time
as the Pediatric Clinic. This one stop service enables family mem-
bers, specifically mothers who are also infected, to easily access
other vital support services.

The Clients Special Needs Fund is a critical part of the Stamford
Ryan White Program. The strained financial resources of many of
our clients often requires the use of emergency funds for medic -
tions, lab tests, home health care, dental, et cetera.

The provision of home health care and respite care is vital to
many individuals who are HIV infected. Without home health care,
clients’ ability to remain in their homes could often not even be
considered an option. For HIV infected women with children, the
provision of home health care may be the only way these mothers
can continue to remain with their children when they are sick.

A special fundraiser was held in Stamford by a private day care
to begin the first child care scholarship fund tor children who are
HIV infected or children who have HIV infected caretakers. This
scholarship fund is small but is a beginning to filling a major gap.
The cost exacerbated by limited space for child care 1s further com-
plicated for families impacted by HIV. As the rate of HIV infection

for women and children continues to increase, child care is a neces-
sity. For the HIV infected mother or father who must get to medi-
cal appointments or is too sick or weak to care for their child all
day long, providing child care can enhance their ability to continue
to take care of their children.

The initiatives highlighted in this testimony are only a few of the
services needed and | am just going to quickly summarize some of
the others. We need to provide funding for outreach efforts. In serv-
ing women and minority communities, we cannot just afford to sit
and wait for those in need to find the service. For many, HIV infec-
tion is only one of many stresses in their lives; when one is worry-
ing about feeding their family or finding shelter they do not worry
about one’s health.

In improving service to HIV infected women and community
members we must offer one-stop service. All services that can pos-
sibly be located in one spot must be, including substance use, legal
services, and mental health. In working with women and HIV in-


104

‘The subject of this hearing, the Ryan White Care Act, is of the utmost
importance to me and to the 18 nonprofit organizations in Connecticut who depend on the
kindness, the generosity of others; and to a large extent rely on our governments promise
to commit the necessary resources to care for persons with AIDS.

Ryan White and AIDS prevention programs are pivotal components to any
successes we may achieve in our ongoing war against HIV disease, but it has been my
experience that you cannot successfully alter the spread of this disease without first
providing safe havens for people to be cared for. Housing Opportunities for Persons with
AIDS (HOPWA) is that vital link which makes Ryan White and HIV preyention dollars a
vehicle for successfully combating the ever burgeoning numbers of persons with
HIV/AIDS who are at risk of homelessness or in fact homeless:

To impose substantial cuts on Ryan White and HOPWA or even threaten them
with elimination is nothing less than foolhardy, and would virtually cripple a marriage of
program dollars which at the very least meet the basic needs of persons with AIDS in a
cost effective, compassionate setting

‘The Connecticut AIDS Residence Coalition, of which my organization is a
founding member plays an important role in the lives of persons with AIDS in
Connecticut. Homes have been created where none existed before; coalitions have formed
between service providers to manage these dollars so that matching funds could be
obtained. This has been possible because of Ryan White and HOPWA.

HOPWA and Ryan White are programs worth saving and funding. They are
success stories in the historical context of this epidemic. The return is enormous on what
I consider a small investment in comparison. I'm compelled to say as well, if you as,
individuals have concerns about having the necessary funds to meet a national
‘emergency, AIDS strikes me as one such example that has yet to receive the necessary
funds to meet the challenge of this global pandemic.

Today's hearing is timely, given the current debate in Washington over budget
concerns, with many opposing representatives jockeying to find appropriate solutions to
this nations financial woes. Presently, citizens and politicians alike around this nation are
asking whether we can afford to provide services, housing, and medical care for persons
with special needs; or should we?

Kara:

The reason I have to disguise myself is I'm concerned that my child, who does not
have AIDS, won't be allowed to have friends at school or visit her house, Pm afraid she'll
be called names or teased. I have to hide my face because I have a terminal illness that
everybody's afraid of, and my child would pay for it. She is paying for it. She's in pain.
She lives it. She breathes it. She goes to bed with it every night.

‘Some nights we talk about it. Some nights she says, "Mommy, you'll be the Nana
‘of my children, won't you?” And | say, “I hope so.” And the next night she says, "Why
can't the doctors make you better?" And the next night she says, "You won't be there will
you?" And the next night she'll say, "Who'll take care me?”



126

Ms. SaNDoRF. Thank you, Mr. Chairman and Congressman
Towns. My name is Julie Sandorf and I am the president of the
Corporation for Supportive Housing.

Mr. Says. Can you just refresh me? That is nationwide?

Ms. SANDoRF. It is a national, nonprofit organization that has
aggregated significant philanthropy to invest in supportive housing
for folks who are homeless and have special needs, including indi-
viduals who are HIV infected and who have AIDS.

Mr. Says, A little louder please?

Ms. Sanporr. Including individuals who are HIV infected and
have AIDS.

What I would like to talk about today is the good news and the
wise investment of both HOPWA, Ryan White, and McKinney mon-
eys in community-based housing and support services. We read in
the papers every day about budget slashing, which often feels very
reckless in this incredible need to reduce the deficit. What I would
like to talk about is how those three programs have been so incred-
ibly cost-effective and why they should be maintained, because
there is no cost-free alternative when we want to provide decent
care and support to people with HIV and AIDS.

Mr. SHAYS. That is a nice expression, no cost-free alternative.

Ms. Sanvorr. There is no cost-free alternative here.

I would like to talk a little bit about supportive housing. Sup-
portive housing marries permanent housing with support services
that enables an individual who is HIV infected or has AIDS to live
independently with support and health in the community setting.
Supportive housing is a grassroots movement started in the late
1980’s by nonprefit organizations like Housing Works, Minority
Task Force on AIDS in New York, STANDUP Harlem, Common
Ground—many, there are about 400 AIDS related housing organi-
zations community-based in the country—who identified housing
and service needs of the population as their highest priority.

The goal of supportive housing for people with AIDS is to enable
the tenant to live a stable, independent life and to the extent pos-
sible avoid costly hospitalizations and emergency treatment. Sup-
portive housing is not only effective in terms of an individual's
quality of life, but it is cost-effective. It stabilizes folks who then
could access managed care services rather than emergency rooms
and extended hospitalizations. On the average, supportive housing
for people with AIDS costs about $27 to $44 a day, compared to
$1,000 or $1,200 for acute care hospitalization.

I would like to go through a case study on a gentleman named
Marty and his four housing options in New York City. Marty is di-
agnosed with AIDS, loses his job and his apartment. He es up
residency in a city shelter where his condition rapidly deteriorates.
He is ‘admitted to a hospital acute care bed and is diagnosed with
tuberculosis.

Marty has four housing options in New York City. He has the
street. Since Marty can no longer live in a shelter due to his AIDS
diagnosis, he tries to survive on the street. This leads to rapid and
severe deterioration of his health and will pose a risk to those
whom he comes into contact with due to his TB diagnosis. Without
access to primary health care, Marty is forced to use hospital acute
care for all his health needs, which he can be expected to spend a


45

of services.

‘The Department is also recommending the option of a waiver from the requirement that
States use 15 percent of its award to provide health and support services to infants,
children, adolescents, and women. Under this proposal, the Secretary would be given
authority to grant waivers for this requirement to States with low incidences of HIV in
these populations, The States, however, must demonstrate that there is an existing
system of care to meet the needs of these populations.

The Department recommends a statutory limitation to clarify that eligible cities for Title
I funds must be metropolitan areas of at least 500,000 with at least 2,000 cumulative
cases of AIDS reported to CDC. The 0.0025 cumulative rate factor for Title I eligibility
increasingly confers eligibility for funding on small and medium-sized communities with
relatively small numbers of AIDS cases. Funding these communities diverts funds from
major urban areas that are experiencing an emergency in health/support services
delivery for people living with HIV.

The Department recommends that two new Ryan White CARE Act titles be established
that would authorize the Special Projects of National Significance (SPNS) and AIDS
Education and Training Center Program (AETC) programs as separate grant programs.
The SPNS program represents a critically important vehicle for identifying, evaluating,
and disseminating innovative models for providing care more effectively to people living
with HIV. Funding the program as a set aside of the total Ryan White CARE Act
appropriation would recognize SPNS’ contribution to Ryan White CARE Act programs
as a whole. It would remove the entire financial obligation for the SPNS program from
Title II and share responsibility for support proportionately across all the Ryan White
CARE Act programs. The reauthorization of the AETC program is necessary due to the
continuing spread of the HIV epidemic, which has resulted in increased training needs
for health care providers in government-funded settings and in the private sector. We
believe the AETC program should be moved to Title XXVI because the location of the
current authority in Title VII does not reflect appropriately the linkage between the
AETC program and the Ryan White programs under Title XXVI. Moving the AETC
program to the Ryan White CARE Act would maximize the linkage of training to the
Ryan White service programs, and would serve to increase coordination and
collaboration among the programs.

Considerable discussion has occurred regarding whether, and how, funding formulas
under Title I and Title I] should be modified. The Department does not have a specific
position or recommendation on this issue. However, if any changes should be made to
the formulas for allocating Ryan White CARE Act funds, the Department would urge
that deliberations be guided by the following principles. First, ensure that substantial
targeted resources are available to those communities whose public health infrastructure
is most heavily affected by providing services to people living with HIV disease.
Secondly, that any alteration in funding distribution take care to ensure that those service

14


87

Beyond dental care, children and babies with AIDS will suffer needlessly over the next
several years as a result of cutbacks in many social programs. At a time when breakthroughs
are being made on many levels in the care of AIDS stricken children and the prevention of
transmission from mother to child, these cutbacks jeopardize the advances that have already
been made and threaten to make life even worse for children with AIDS.

Central Brooklyn has one of the highest proportions of tested newborns with HIV serostatus
in the United States and a rate of heterosexual transmission almost twice that of the rest of
New York City. Neatly 60% of Brooklyn’s female cases are in Central Brooklyn. At the
same time, the rates for other sexually transmitted diseases such as gonorthea and syphilis
are among the highest. In 1993, in northem Brooklyn 106 of the very small number of
newborns who were tested, tested positive for HIV. 276 tested positive in central Brooklyn.
‘And, funding for prenatal care and education programs are threatened by proposed budget
cuts on every level. Each of these factors points to a population that continues to be one of

the highest at risk for future cases of mother-to-child transmission of HIV.

In light of the ACTG 076 trial, which found that prenatal administration of AZT substantially
reduces the rate of transmission from mothers to infants and in light of other studies that
indicate that many infants are born uninfected only to become infected through breast milk, a
concerted effort is required on all levels of government to provide education, testing,
counseling and care to pregnant and breastfeeding women. While many states are wrestling
with the decision whether to institute mandatory testing for newborns, in the interim much

can be done to minimize transmission from mother to child.


Good morning, Mr. Chairman, members of the subcommittee, and to all
those present. I am George Grob, Deputy Inspector General in the

Department of Health and Human Services.

I welcome the opportunity today to discuss the emerging populations affected
by the HIV/AIDS epidemic and the ways some local communities respond to
the increasing needs of these new populations. The Ryan White Act was

created in part to provide health care to those who would not otherwise have
access to health care, and to provide a comprehensive response to their needs

and those of their family.

Over the past 2 years, the Inspector General's office has looked at a variety
of Ryan White issues. We have previously examined the Act's funding
formulas, reviewed data on expenditures, and analyzed consortia activities
and special projects of national significance. These reports are of course

available to the public.

After these efforts, we were most anxious to put the information in these

reports in the context of how services arg really delivered at the local level to

House Government Reform and Oversight Committee Page 1
Subcommittee on Human Resources and Intergovernmental Relations July 17, 1995


AIDS IN THE 1990’s: SERVICE DELIVERY TO
EMERGING POPULATIONS

MONDAY, JULY 17, 1995

HousE OF REPRESENTATIVES,
SUBCOMMITTEE ON HUMAN RESOURCES AND
INTERGOVERNMENTAL RELATIONS,
COMMITTEE ON GOVERNMENT REFORM AND OVERSIGHT,
Brooklyn, NY.
The subcommittee met, pursuant to notice, at 11 a.m., in Brook-
lyn Borough Hall, 209 Joralemon St., Brooklyn, NY; Hon. Chris-
topher Shays, (chairman of the subcommittee) presiding.
Present: Representative Towns.
Also present: Senator Velmanette Montgomery,
Staff present: Kate Hickey, professional staff; Thomas M. Costa,
clerk; and Cheryl Phelps, minority professional staff.
Mr. Suays. If I could, I would like to call this hearing to order.
My name is Christopher Shays. I serve with Ed Towns on this
subcommittee that will be conducting this hearing today and I for
the record need to read in a statement to give the parameters of
what this hearing is about.

STATEMENT OF HON. CHRISTOPHER SHAYS, A REPRESENTA-
TIVE IN CONGRESS FROM THE STATE OF CONNECTICUT

Mr. SHays. It is my pleasure to in fact be in Brooklyn today and
to convene this hearing with my colleague, Ed Towns, the ranking
member and former chairman of this committee.

The purpose of today’s hearing is to review how the Department
of Health and Human Services, HHS, and private providers are
Preparing to bring health and support services to the expanding
and changing AIDS population, primarily to minorities, women an
children, where infection rates are growing rapidly. The dynamic
nature of the AIDS epidemic demands that those infected have ac-
cess to a variety of services such as medical, dental, housing and
counseling services. Programs funded by HHS and the Department
of Housing and Urban Development, HUD, such as the Ryan White
CARE Act and the Housing Opportunities for People With AIDS,
HOPWA, are important elements of that comprehensive effort.

In the 5 years since enactment, the Ryan White CARE Act has
successfully helped States and municipalities establish mechanisms
to provide needed services. HOPWA has provided funding for hous-
ing projects to alleviate homelessness among infected people. I be-
lieve both Ryan White and HOPWA programs have been successful
in their missions.

165)


42

grant is compromised by the need to prepare or revise inadequately developed existing
plans for the coordination and delivery of HIV services. The creation of a local planning
and decision-making process, and the coordination of resources with other Title XXVI
ical challenges for the communities which are about to become
eligible metropolitan areas (EMA). First year grants under Title I would be utilized
more effectively in realizing the emergency provisions of the legislation if new EMAs
were awarded small, one-time planning grants to complete the essential groundwork of
the HIV Pianning Council. The Department recommends making one-time planning
grants available to EMAs expected to qualify in the next funding cycle, to assist them in
complying with the expedited funding allocation process required of Title I grantees.

Ongoing challenges for all grantees include developing and implementing methodologies
to achieve community-based comprehensive needs assessment and planning, and to
integrate these activities within a broader statewide assessment of need. Technical
assistance is often sought by grantees to assist them in these efforts and the development
of specific service systems, such as case management, primary/specialty medical care,
communixj-based home cars, and transportation. The Department recommends making
technical assistance more readily available to all grantees.

To maintain and build upon the service delivery systems that have been put in place with
Ryan White CARE Act funding, the Department recommends that localities funded
through Title I have a maintenance of effort provision similar to that.in Title I,
requiring continuation of HIV-related care services from one year to the next.
Maintenance of effort requirements are important for ensuring the mandate that Ryan
White funds be used to supplement, not supplant, existing local expenditures for HIV-
related care services.

Strengthening local autonomy and decision-making will ensure responsiveness to the
epidemic from region to region. To enhance local autonomy the Department
recommends private for-profit entities to be permitted to contract for the delivery of
services, when they provide the only available or highest quality of HIV care. For many
grantees, for-profit entities are important components in the continuum of care for
people with and at risk of HIV. The current !anguage that restricts contract funding to
public and private non-profit entities in which we believe negatively affects the
development of such care, and limits HIV care options for these populations.

We also recommend that the legislation to reauthorize the Ryan White CARE Act allow
up to 10 percent of Title I funds to be used for inpatient hospital costs under a capitated
care model. Capitated systems of care are being used more and more by the public and
private health sectors as a cost effective way to provide health care services. Because
the current Ryan White CARE Act legislation does not provide for use of Title I funds
for inpatient care, grantees have not been able to use a capitated systems option for
persons with HIV/AIDS.

i


73

the AIDS epidemic continues to shift to women and minority
communities who have far fewer available resources of their own.
To serve these communities with diminishing resources is impossible.
As more and more cities and towns become eligible for Ryan White
grants, level or diminished congressional funding will result in less
funds to go around and therefore decreased services.

The cost of not providing HIV services is great. Society will pay this
cost at some point. The delivery of Ryan White funded services is
both cost effective and compassionate. Without the initiatives
funded by Ryan White Title I and Title II in Stamford there are
hundreds of persons with HIV infection who would receive no care
at all. Nationally, more HIV infected individuals than we can begin
to count, would be left without any life prolonging AIDS services if
there is not Congressional re-authorization and refunding of the
Ryan White Act.


82

Subcommittee on Human Resources and Intergovernmental Relations

Hearing, July 17, 1995, Brooklyn Borough Hall
“AIDS in the 90's: Service Delivery to Emerging Populations”

Delphine Mendez de Leon, Vice President, Institutional Development & Planning

The Brooklyn Hospital Center

Good afternoon, My name is Delphine Mendez de Leon and I am the Vice President for
Institutional Development & Planning at The Brooklyn Hospital Center, a 653-bed multi-site
tertiary care healthcare institution with facilities in northern and central Brooklyn. Before I
begin, I would like to thank Congressman Towns for his support of the Ryan White Care Act
reauthorization bill (HR 1872) which was voted out of the House Commerce Committee last

Thursday. It includes important pediatric care programs and the HIV dental care program.

Our service area includes some of the most medically underserved communities in the nation
and the residents of these communities are experiencing health crises of a magnitude usually
associated with Third World countries. Of the more than 500,000 people living in our service
area of Fort Greene, Bedford-Stuyvesant, Bushwick and Flatbush more than half are eligible
for Medicaid or are without health insurance. Infant mortality rates are more than twice the
New York City average and more than three times the national rate. On average, there are
only five to ten general or family physicians for every 100,000 residents. Measles rates are
more than three times the national average, due mostly to the low child immunization rate.
Due in part to AIDS, tuberculosis has resurged with a fury. Drug resistant strains are now
common in New York City’s hospitals. More than half of those who contract these forms of

TB will die.


AIDS IN THE 1990’s; SERVICE DELIVERY TO
EMERGING POPULATIONS

HEARING

BEFORE THE

SUBCOMMITTEE ON HUMAN RESOURCES
AND INTERGOVERNMENTAL RELATIONS

OF THE

COMMITTEE ON GOVERNMENT
REFORM AND OVERSIGHT
HOUSE OF REPRESENTATIVES

ONE HUNDRED FOURTH CONGRESS
FIRST SESSION

JULY 17, 1995

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

oe

U.S, GOVERNMENT PRINTING OFFICE
95-181 CC WASHINGTON : 1996

For sale by the U.S. Government Printing Office
a Superintendent of Documents, Congressional Sales Office, Washington, DC 20402
2

ISBN 0-16-053687-1


- Pres

108

Resource List

lents Commission On AIDS
Chairman Admiral Watkins

Presidents Commission On AIDS
Chairwomen Dr. June Osborn,

Tue Forgotten Children of the AiDS Epidemic
Edited by Shelley, Janice Gruendel, and Warren Andiman
Yale University Press 1995

CT. AIDS Residence Coalition Standards of Care 1994

Department of Social Services (CT) Department of Health and Human
Services, AIDS Division



181

A. Supported SROs

One type of supportive housing model for people with AIDS is the Supported
Single Room Occupancy (SRO), which often provides on-site services, but helps tenants
to maintain a level of normality by living with others who do not have AIDS.

The Times Square on West 43rd Street in Manhattan, for example, is a 652-unit
facility with SRO and efficiency-style rooms for a mixed tenant population, including 50
persons with AIDS. Low-income working individuals are intentionally mixed with
formerly homeless individuals with a history of chronic mental illness, homeless persons
from the general shelter population, and people with AIDS in order to create an integrated
and supportive residential community for a wide spectrum of individuals in need of low-
cost housing. The overall aim is to provide a residential rather than institutional setting,

The Times Square’s approach to serving the needs of people with AIDS is to
provide support when needed, but to enable the individual to remain as independent as
possible. Many of its services are preventative, early intervention strategies that are seen
as part of a continuum of care. For instance, an on-site nurse is available in emergency
situations, but is also skilled in fitness instruction, and is available at ail times to help
tenants to maintain their cardio-vascular fitness. An example of one of their most
successful preventative interventions is the provision of Gatorade to tenants at risk of
becoming dehydrated. Early on, staff at the Times Square noticed that one of the major
problems facing their AIDS tenants was severe dehydration, which tended to rapidly
become an emergency condition requiring costly hospitalization. The simple solution was
to provide free Gatorade to any AIDS tenant who requested it. Since the program went
into effect, none of the Times Square’s tenants with AIDS have been hospitalized due
simply to dehydration

The Times Square staff also believe that a vital factor in helping people to remain
healthy is the formation of an informal supportive community. To help people maintain
their psychological well-being, it organizes numerous free on-site and off-site recreational
activities that are available to all tenants of the SRO. It also offers opportunities for
people to work light jobs in order to maintain their sense of purpose in life. To access off-
site medical and social services, the Times Square offers a free van service.

.B.  Congregate Housing

Another type of supportive housing model for people with AIDS is congregate
housing, where most if not all tenants are people with AIDS and there is an emphasis on
creating a community within that population.

STANDUP Harlem is a grassroots community-based organization founded in
December 1990 by Louis Jones, a formerly homeless person living in recovery and living
with AIDS. Located in Central Harlem/Morningside Heights, STANDUP Harlem’s
mission and therapeutic philosophy is to provide empowerment and alternatives to active




109

UPDATE

Exposure to AIDS

Percentage of people In
the United States who
contracted AIDS In 1994 Hetecohaayl contse}

by type of exposute, = «

*Men he he o ox with
men ar Hi

cares me
tntusone or tesue, Total humbet of eases: 80,604

Carlig for People With H.1.V.

Cumulative grants awarded through the Ryan White Compre-
henstve AIDS Resource Emergency Act in the liscal years 1991
through June 30, 1995. Pending grants yet fo be awarded In fiscal
1995, spending will total more than $2 bition.

Alabama $ 10,267,618 Nebraska $ 1,091,716
‘Alaska 7,081,047 Nevada 4,732,261
Arizona. 14,504,584 New Hampshire 717,850
Arkansas 4,801,404 New Jersey 96,982,765
Callfornia 400,708,580 New Mexico 3,715,398
Colorado 14,991,377. New York 468,074,914"
Connecticut 16,291,613 NorthCarolina . 10,832,007
Delaware 1,655,026 North Dakota 419,872
Dist. of Columbia 60,128,380 Ohio 12,858,964
Florida 176,419,854 Oklahoma 4,261,127
Georgia 53,108,595 Oregon 8,963,018
Hawall 2,113,003 Pennsylvania 54,569,625
idaho - 568,982 Puerto Rico ~ 78,812,601
ifinots: 65,195,984 Fihode Island 3,191,069
indiana 8,968,824 South Carolina 7,209,356
fowa 1,895,551 South Dakola ‘500,000
Kansas 2,298,574 Tennessee 5,770,768
Kentucky 2,456,912 Texas 123,014,323
Louisiana 21,953,379 Utah 2,813,523
Maine 810,055 Vermont - 748,940.
Matyland 33,002,650 Viginia 9,067,739
Massachusetis 49,057,307 Washingion 23,870,876
Michigan 22,158,670 West Veginia 774,743
Minnesota 3,958,743 Wisconsin 4,627,555
Mississipp!_ 3,890,029 Wyoming 444,037
Missourt 28,703,492 Guam 16,937
Montana 456,197 Virgin Islands. 170,187

Sources: of Heath and Humén Serviced:
‘Control end Prevention:



30

a number of studies that have shown that these questions have not
been met. The Assistant Secretary continues to monitor the lit-
erature, both published and unpublished, to try to get to the point
where we can answer that honestly, with a degree of assurity that
is acceptable to the Assistant Secretary, and the Surgeon General,
before going ahead and opening up Federal funding for needle ex-
change support. Currently States and cities, if their laws so allow,
can put their resources into needle exchange programs.
(the prepared statement of Dr. Goosby follows:.


89

In our obstetrical clinic, one of the busiest in New York City, 15-20 HIV+ women are
receiving prenatal care at any given time. The care provided to HIV+ women is more
intensive than that provided to other pregnant women with one visit to the clinic per week
and 5 daily doses of AZT. Again, early testing and counseling can significantly improve the
quality of life for the mother and significantly reduce the chance that she will transmit HIV to
her unborn child.

In our pediatric clinic, 40 children diagnosed with HIV are currently receiving care. Recently,
the three year old child of a women diagnosed after birth with HIV presented with infections,
severe neurological problems, malnutrition and with general failure to thrive. The child was
incapable of interacting with his environment and was living with a sick mother who had failed
to comply with treatment that had been recommended for her. Luckily, pediatricians at the
Hospital Center recognized the mother’s status and realized that the child’s symptoms were
likely indicative of HIV infection. With intense social service intervention, the child was able
to be treated and has begun to interact with others on a more normal level. However, without
this recognition by the medical staff and without qualified social service intervention, the child
would most likely have been retumed to the same environment where his health and well-
being would have been in jeopardy.

Clinical services for children with AIDS are just the beginning. Funding for social and other
support services as well as quality of life improvements is essential as well to ensure the
children living with AIDS can continue to thrive and grow.


84

Today, I have been asked to highlight for you the importance of continued funding for pediatric
AIDS services and for dental services for HIV infected individuals. ‘The Hospital Center's
experience with providing dental care to HIV infected individuals and those at risk for
infection demonstrates the need for a rethinking of the funding and structure of federal

reimbursement for dental services.

In 1992, the Hospital Center received funding from the National Cancer Institute as part of a
consortium of institutions located near large Hispanic populations. The grant enabled us to
undertake an extensive telephone and community survey regarding diet and attitudes about
health care and cancer. The results of this study indicate that the majority of Hispanics in
northern and central Brooklyn consume diets that are high in fat and sugar and low in fresh
fruits and vegetables, a contributing factor in poor oral health. Medicaid recipients and the
uninsured as a group have poorer oral health that the insured. For those with HIV, poor oral
health contributes to their decline and can hasten mortality. Like the population as a whole,
many of the HIV infected individuals in our service area do not have a primary care physician,

let alone a dentist or regular dental care.

AIDS patients. as a group suffer a higher incidence of oral disease. Many of the first
symptoms of AIDS show up first in the mouth; thus, dentists are often the first to recognize
the early stages of AIDS in an at-risk individual. For this reason, it is especially important
that dental services for those at risk, rather than just for those who have already been
diagnosed as HIV+, be funded at levels that permit the provision of regular dental check-ups

for Medicaid recipients and for the uninsured.


12

In Los Angeles, a multilingual city, Ryan White funds are used to provide
translators to assist a variety of non-English speaking clients with medical
and social service providers. And since there can't be every type of
translator at every Ryan White site, the translators travel to these offices to
meet with the clients there to help them get served. One agency in particular
uses translators who themselves are HIV positive, and they are also able to

teok out for the clients to help ensure they receive the services they need.

New Orleans, in response to the increases of infected women, and in
conjunction with the Department of Housing and Urban Development, is now
funding housing for families affected by HIV/AIDS. Multi-family homes are
being rehabilitated io accommodate families with children. One site provides
individual apartments for five adults and their children, and besides offering
assistance with medications, activities of daily living and meal preparation,
also offers mental health services, case management, skilled nursing, social

activities, and transportation to appointments and community recreation.

And here in New York City, where some 11,000 children have been

orphaned by AIDS. a model for the rest of the country was developed that

House Government Reform and Oversight Committee Paye 5
‘Subcommittee on Human Resources and Intergovernmental Relations July 17, 1995


54

A mobile van is now reaching HIV-infected women in under served areas in Central Brooklyn. The
van provides, in addition to primary care, gynecological, prenatal, and nutritional counseling
services. In cooperation with social services agencies, social services are provided to the women
who obtain health care from the van.

A community site that is convenient to where many HIV-infected women live now offers a new
program that includes substance use counseling, case management, 12-step groups that specialize
in drug and alcohol problems, psychological counseling, and training in parenting skills. The
agency carries on intensive coordination and follow-up to assure that HIV-infected women in the

program obtain the primary health care and other social services they need.

In a collaborative effort with the New York State AIDS Institute, we have identified six facilities
in poor New York City neighborhoods with high numbers of HIV-infected women as new or
expanded sites for HIV primary care. The programs now being organized at these sites are expected
to serve more than 700 HIV-infected persons, of whom a large proportion will be women

Services to Minority Communities

‘The Early Intervention Program (EIP) establishes links between health care providers and the HIV-
infected individual whose treatment can be enhanced with early medical care and social services
This link is intended to eliminate or reduce social, psychological, and economic problems. Located
in Brooklyn, the EIP program provides services to approximately 1000 HIV positive clients annually
from African-American, Caribbean and Spanish-speaking cultures

Immigrants, both legal and undocumented, are included in many minority communities. The
Department is deeply concerned about the proposed restriction of immigrants’ access to health care
services as part of the House and Senate welfare reform proposals. The federal proposals currently
under discussion would eliminate the availability of numerous benefits essential to the health of
immigrants residing in the United States. The Prevention Planning Group is especially concerned
that the denial of preventive services to immigrants is penny-wise and pound foolish. This denial
will result in a higher number of people relying on emergency care, which is in fact, a more costly

4


96

like Housing Works have been forced into existence. With little more than
sheer determination, we have had to build whole new infrastructures from
scratch. We have done these even while competing for money and support
with our “white* counterparts who have historical received the majority
of the funds designated for AIDS. As funding flattens, the competition
for scarce public and private dollars will only increase. Without solid
infrastructure and community support, we will be increasingly
overburdened with demands that we cannot possibly meet. As a
consequence, those who must turn to us for aide will in many instances be
left unserved or underserved.

The demographics of AIDS in urban areas represent personal
circumstances that are themselves barriers to effective service delivery.
Homelessness itself is a critical barrier to effective AIDS services. For
years, Government funded studies completely ignored epidemiology among
homeless people for the simple reason that everyone new that the only
way to deliver effective services would be to provide housing, an
exceedingly expensive proposition. Even today, having been the largest
single beneficiary of the Housing Opportunities Act for People With AIDS,
New York City refuses to provide supportive housing to anyone with HIV
who lacks an AIDS diagnosis. Expensive as housing is, one cannot imagine
a more short sighted position. Not only do homeless people with HIV get
ill more quickly,requiring the intensive medical interventions leading to a
disproportionately using the most expensive of medical services, but,
without access to the basic necessities for subsistence, they are forced
to engage in high risk behaviors as a matter of survival. Thus, we have
guaranteed that even if a cure is found tomorrow, the AIDS epidemic will
continue to spread. Our demand for housing for all people with AIDS and
HIV makes sense not just as a matter of compassion or because one
subscribes to the universal declaration of human rights. It makes sense
as a matter of basic public health. But then it would have made sense ten
years ago to make prevention efforts among homeless people a major
priority and we still haven't learned that less here in New York or in other
urban areas.

As with homelessness, chemical dependence, and, equally important,
our attitude toward substance users and chemical dependence, are a major
barrier that interferes with service delivery among people living with
AIDS and HIV. As we often say it, “dead addicts don’t recover.” Yet, far
too many service programs and funding sources require that people be drug


75

is not the forum to get into this issue, but we have to deal with
the allocation of resources for combating the disease within the
structure of services, housing, and research. Do any of you care to
just make a short comment as to the priorities of those three? And
if you are not willing to say something of some significance, I would
just as soon not even get into the issue; but if you have any passion
about this issue, I would like to hear it.

They all are needed?

Dr. GUTIERREZ. What issue?

Mr. SHays. The issue is where you set your priority in those
three—which gets first attention?

Dr. GUTIERREZ. Well, the moment that you set yourself up to es-
tablishing a priority for a State, as an example, you shortchange
other communities. It is impossible to do. So what we try, what we
do is to essentially look at regions and subregions and X ok to see
what are the relative—what has relative importance for each of
those communities, and then establish an initiative or a project
that responds to that need. It is impossible to do otherwise. You
shortchange people.

Mr. SHays. Mr. Towns.

Mr. Towns, Thank you very much, Mr. Chairman.

Dr. Gutierrez, you mentioned about a special needs plan. Is that
dependent on Federal funds?

Dr. GuTIERREZ. No, the special needs plan is part of the State’s
waiver to establish managed care in the State of New York—man-
datory managed care in the State of New York—and in order to re-
sponsibly care for people with HIV infection, we determined that
a special needs plan would be the way to establish the vehicle nec-
essary, the organization necessary to include those HIV care pro-
viders that have the experience, that have been involved in HIV
care and support services over the course of the epidemic and be-
come active players in providing continual care and treatment for
people with HIV, even in a managed care environment.

Obviously the mainstream managed care plans have some expe-
rience in HIV care. It is not uniform and it has been difficult for
the AIDS Institute to determine how much each plan has. But irre-
spective of what the health maintenance organizations have or do
not have, we believe that it was fundamentally important to pro-
vide a system of care that would be different for people with HIV
infection because there was already a care infrastructure in place
supported by State and Ryan White CARE dollars.

Mr. Towns. Right. Emerging populations are more diverse and
not as well organized as the earlier population infected by the
AIDS virus. In your experience, what initiatives could we promote
on the Federal level to enhance service delivery to these patients?
What can we do? Because I think that we have to address it. We
just cannot continue to ignore it. We look at the numbers you are
talking about and we see in terms of how they are changing; but
at the same time we are not changing, and whether we do—also,
what do I need to do? I do not have a problem asking you that ei-
ther.

Dr. GUTIERREZ. Do you want to answer that?

Mr. NETBURN. I think part of it in the new Ryan White legisla-
tion that is proposed there is——


36

to receive timely medical care for a lesser cost than if they had to travel long distances
to an urban center. In the first year (1993) 92 patients were served; in the first 6 months
of 1994, over 100 patients received care.

Pennsylvania: A seven State funded consortia served 4,600 patients with HIV in 1992
and 5,884 patients in 1993, providing both primary medical care and dental care, home
health care, substance abuse treatment and related support services.

Florida: Before Title I funding was available, the HIV clinic in Pensacola operated one
day per week and served 70 patients. The clinic is now open five days a week and serves
over 500 active patients. The Sun Coast AIDS Network which previously provided care
to 462 patients each quarter now serves of 1000 patients in that time. Recent approval
to purchase a van for a mobile HIV clinic will make it possible to deliver medical care
to HIV/AIDS patients living in rural areas of northwest Florida who otherwise would
have to travel over two hours for routine medical care and treatment.

While these examples highlight the success of increasing the number of people able to
access care, there are still critical shortages in the availability of services. More primary
care providers are needed in both rural and urban underserved areas, and many
individuals are not yet able to receive needed services due to insufficient resources. A
particular challenge that is being addressed by Ryan White CARE Act grantees is
developing strategies and service capabilities to respond to the changing demographics of
HIV which increasingly affect minority populations, injection drug users, and poor
women and children. Many of these individuals are uninsured and face substantial
barriers to entering and staying in a system of care. In a January 1995 report, the
General Accounting Office documented the effectiveness of the Ryan White CARE Act
in reaching out to serve these emerging populations, while noting that cultural and social
barriers continue to make this an important focus.

Services Provided Through the Ryan White CARE Act

‘The Ryan White CARE Act has made a broad range of health care and support services
available to people with HIV/AIDS, including primary medical care, prescription drugs,
home health care and hospice care, dentat care, drug abuse treatment, HIV prevention
counseling, case management, and linkages with housing assistance and transportation to
enable people to access and remain in care. Services for members of minority groups
and other special needs populations such as women and children, adolescents, and the
homeless are increasing and becoming more appropriate and accessible. Programs have
also expanded. services for persons with HIV/AIDS who are also substance abusers or
who have TB. Because of differing local demographics of the epidemic, and varying gaps
in local health care delivery systems, the funding priorities and services provided through
the Ryan White CARE Act vary among grantees in accordance with loca! planning
council and State consortia allocation decisions.


48

STATEMENTS OF DR. BENJAMIN MOJICA, ACTING COMMIS-
SIONER, NEW YORK CITY DEPARTMENT OF HEALTH; ACCOM-
PANIED BY DR. NILSA GUTIERREZ, DIRECTOR OF THE AIDS
INSTITUTE, NEW YORK STATE TITLE II GRANTEE; AND
DEBRA KATZ, AIDS PROGRAM COORDINATOR, STAMFORD
DEPARTMENT OF HEALTH, STATE OF CONNECTICUT TITLE

Mr. Mouica. Good morning. Thank you, Mr. Chairman.

Mr. Says. Good morning. I will again remind you to speak very
loudly. I am going to be a little more strict on the 5-minute rule
here and I will try not to interrupt you.

Mr. Mogica. I will do that. I have never been known to raise my
voice but I will try to now.

Mr. Suays. It is not loud enough.

Mr. Mosica. Good morning. Mr. Chairman, Mr. Towns, I have
brought along with me assistant commissioner Mitchell Netburn,
for the Ryan ite CARE Services, the city of New York.

1 am Ben Mojica, 1 am acting commissioner for the city of New
York, the City Health Department. Thank you for inviting us to
testify today on the topic of service delivery to emerging popu-
lations affected by the AIDS epidemic.

Every week, close to 200 new AIDS cases are reported in New
York City and approximately 130 people die of this illness. New
York City, one of the first areas in the Nation to be struck by
AIDS, continues to be the center of this tragic epidemic, with a
total of 17 percent of all AIDS cases in the United States, although
we just have 3 percent of the U.S. population.

The epidemic remains tragically dynamic with an increasin,
number of cases and some dramatic changes in the population af-
fected. Since the beginning of this decade, intravenous drug use, as
a risk activity, has been increasing and, indeed, has surpassed sex
between men as the leading cause of transmission for men. There
has also been a steady increase in AIDS cases among women with
transmission attributed to substance abuse and sex with infected
male partners. Infants born with HIV are the tragic outcome of
women with HIV infection.

Minorities have been disproportionately affected by the epidemic.
Black and Latino New Yorkers make up, respectively, 25 percent
and 24 percent of the city population, but over the course of the
epidemic, 39 percent of people reported with AIDS have been black
and 30 percent Latino. Whites constitute 43 percent of the popu-
lation but only 30 percent of the AIDS cases. Additionally, women
of color are much more likely than white women to have AIDS.
Black women have accounted for 53 percent and Latino women for
33 percent of all cases reported among women in New York City.
The impact of AIDS is not limited only to those populations, how-
ever; 444 cases have been reported among Asian/Pacific Islanders
and 22 among Native Americans and Native Alaskans since the be-
ginning of the epidemic.

Women now constitute 23 percent of all cumulative AIDS cases
in New York’s eligible metropolitan area, as defined by the Ryan
White CARE Act. More than half of these HIV infected women ap-
pear to be concentrated in three_poor, largely black and Hispanic
communities—the South Bronx, Central Brooklyn and Upper Man-


7

Lambda Independent Democrats Page 3
Unfortunately, more work is.needed. This network must support, undergird, expand
and enrichen many of the existing services — some of which were developed in the
1980s. Just as importantly, proactive responses must be created to stop the spread

of HIV and AIDS in underserved communities before they become decimated by AIDS.

The development of proactive responses to stem the tide of the AIDS epidemic in
underserved communities has been slow at best. This is clearly exemplified in the
development of services for communities of Color. During the early years of the first
decade of the AIDS crisis, advocates forewarned government officials that
comprehensive and culturally appropriate services needed to be developed reaching
People of Color communities. These visionaries saw that AIDS cases would explode
within communities of Color if programs providing a full range of culturally competent
and sensitive services including prevention multilingual education services in
languages in addition to English and Spanish were not developed. These forward
thinking people saw the need to develop powerful community responses to HIV/AIDS

in traditionally underserved and historically disadvantaged People of Color communities.

Although HIV and AIDS programs have been developed tragetting communities of
color, many would argue that the government's response is a case of "too little too
late." Of the 75,633 cumulative cases reported in New York City as of March 31, 1995,
53,730 or 71% were amongst People of Color. As of May 31, 1995, Blacks and Latinos
made up 81% of all AIDS cases between the ages of 20 to 24 in New York City. While


53

women, adolescents and young adults, and new minority groups composed of recent immigrants,
it is even more crucial to link prevention and education efforts with direct services. We are
supportive of the increased emphasis being placed by the federal government on linking prevention
and service delivery.

Consistent with this linkage, another critical component of effective AIDS services delivery is local
community participation in the planning process. Under Title I of the Ryan White CARE Act, New
York City has created the HIV Health and Human Services Planning Council which sets the
priorities and allocation of the Ryan White funds. New York City has also formed the HIV
Community Prevention Planning Group (PPG) which is funded by the Centers for Disease Control
and Prevention, and like the Ryan White Planning Council is composed of community service
providers, elected officials, and governmental agencies. The PPG serves to identify new needs and
articulate policies in areas of HIV prevention services. New York City's AIDS Policy Coordinator,
who is appointed by the Mayor, serves on both panels, and our Departmental staff work closely with
both groups to assure a coordinated and comprehensive approach in planning for both prevention
and service delivery programs.

I would now like to describe to you selected programs administered through the Department of
Health with federal support which provide direct services to emerging populations, notably women
and minorities affected by AIDS.

Services to Women

‘Women represent nearly one in every four HIV-infected adults in our metropolitan area. Seventeen
percent ofall pregnant women in New York City receive late or no prenatal care, while 50% of all
births in New York City are covered by Medicaid. These statistics emphasize the barriers to care
that so many women and their children in New York City face. Because HIV-infected women have
increased health needs that differ from men's, and are often single parents with limited mobility,

special initiatives are needed to assure that they obtain essential services. Ryan White Title I
funding has been especially critical in meeting the needs of these women.


138

been such, we suggest, and counsel her in taking an HIV test in
order to better help her unborn baby.

Mr. Cy.ar. Can I add to that?

Mr. Says. Yes, and then I will——

_ Mr. Cytak. It is not just counseling, but it is also providing serv-
ices——

Mrs. MCKINNEY. Right.

Mr. Cy.ar [continuing]. If the woman is homeless, if the woman
does not have medical Fenefite, if she does not have entitlement,
she is not going to take an HIV test.

Mr. SHays. Let me just say that we are in my colleague’s district
and I would like to give him time also. He is driving and he may
decide to leave later than I want.

Mr. Towns. You be assured you will be on the 2 o'clock.

Mr. Suays. I just want to also say, Ms. Sandorf, that your testi-
mony will be very helpful to us in how we articulate our presen-
tation to the Congress.

Ms. SanvorF. I would be happy to be of assistance.

Mr. Suays, Thank you.

Mr. Towns. Again, let me thank all of you for your testimony

and to say to you, Senator Montgomery, we really appreciate your
involvement——

Mr. SHays. Thank you, Senator.

Mr. Towns [continuing]. In this area on the State level. And of
course, how we can work together, stand ready to do so.

Also, let me just say to you too, Mrs. McKinney, I had the oppor-
tunity to serve with your husband for many, many years in the
Congress, so I know of his great work and I am happy to see that
many of the things that he talked about on the floor of the House,
that you are now making certain that we keep them alive. So I
would like to thank you for that.

Mrs. MCKINNEY. Thank you.

Mr. Towns. And all of you, for the work that you are doing. Of
course, I know in terms of the work that Lambda is doing here for
many, many years as well.

Let me sort of ask this very quickly, in terms of if you could mod-
ify one program or regulation which affects a Federal program that
offers services to AIDS patients, what would that modification be,
and then of course why?

Mr. SHays. Good question.

Mr. Cy.ar. I think my first answer would be t-—

Mr. Suays. A little louder, please?

Mr. CyLar. My first answer is to eliminate the prohibition on
needle exchange programs. I think we need to move away from—
needle exchange and active drug users are probably one of the fast-
est growing population of people infected, either because of the men
directly or because of the women that they have sex with secondar-
ily. | think we need to remove that barrier and I think I would also
investigate funding more harm reduction programs. My agency
runs a needle exchange program that is the only needle exchange
program that is part of a comprehensive social service agency. It
can be done and it can stop the spread of this virus.

Mr. Towns. Anyone else?


49

hattan—where the health care and social service infrastructure re-
quires continuing and increased support.

Also, many HIV infected women are single parents, often with
HIV infected children. Therefore, effective service delivery to this
population must not only encompass their immediate medical
needs, but also provide services such as day care or home attend-
ants which enable women to access the medical and social services
they so desperately require. It is also important to stress the toll
of AIDS on the lives of the uninfected. In 1993, the Orphan Project,
a not-for-profit organization, found that in New York City alone,
AIDS had: orphaned 5,400 children under 12 years and 5,400 chil-
dren between 13 and 17 years old.

This changing face of the epidemic, the comorbidity of HIV with
tuberculosis, sexually transmitted diseases, and mental illness, and
the presence of social problems including homelessness, have
served to complicate delivery of vital health services and preven-
tion activities. The HIV/AIDS epidemic in New York City, there-
fore, presents unique challenges to service delivery. It has become
a continuing challenge, indeed, to provide accessible, effective, and
affordable services to these various communities with their own
specific needs.

The Ryan White CARE Act has funded critically needed AIDS
service programs within and outside the city of New York and the
Health Department. Ryan White moneys support innovative and
effective programs that address the very complex needs of a some-
times difficult to reach population—programs which would dis-
appear without this crucial funding, leaving these communities
cruelly underserved. Unlike Medicaid and other locai entitlements,
title I gives us the flexibility to respond quickly to the shifting
needs created by the HIV/AIDS emergency.

Although title I funds are used for services to HIV infected peo-
ple and not for prevention, we believe that the title I program has

elped to curtail the spread of the epidemic as well, since participa-
tion in services motivates people to adopt safer practices that re-
duce the likelihood of transmission. As the AIDS epidemic increas-
ingly affects women, adolescents and young adults, and new minor-
ity groups composed of recent immigrants, it is even more crucial
to link prevention and education efforts with direct services. We
are supportive of the increased emphasis being placed by the Fed-
eral Government on linking prevention and service delivery.

Consistent with this linkage, another critical component of effec-
tive AIDS service delivery is local community participation in the
planning process. Under title I of the Ryan White CARE Act, New
York City has created the HIV Health and Human Services Plan-
ning Council which sets the priorities and allocation of the Ryan
White funds. New York City fas also formed the HIV Community
Prevention Manning Group which is funded by the Centers for Dis-
ease Control and Prevention, and like the Ryan White Planning
Council is composed of community service providers, elected offi-
cials, and government agencies.

I would now describe to you selected programs administered
through the Department of Health.

Mr. Suays. I am going to have to ask you to summarize, Doctor.
Tam sorry.


78

Ms. MENDEZ DE LEON. Mendez de Leon.

Mr. SHays. Mendez de Leon, nice to have you here.

ain, I am going to remind you——
is. MENDEZ DE LEON. Speak up.

Mr. SHays [continuing]. There is no—you have to yell out, you
have to speak loudly.

Mr. Towns. Those people in the back, if you want to come for-
ward, please do so if you cannot hear. Why don’t you take this op-
portunity and just come up closer so you can hear. Sometimes
these voices drop and—last chance.

Mr. Suays. Thank you.

STATEMENTS OF DELPHINE MENDEZ DE LEON, THE BROOK-
LYN AND CALEDONIAN HOSPITALS INSTITUTIONAL AD-
VANCEMENT; ACCOMPANIED BY DR. MONICA SWEENEY,
MEDICAL DIRECTOR, BEDFORD STUYVESANT FAMILY
HEALTH CENTER; KEITH CYLAR, COEXECUTIVE DIRECTOR,
BROOKLYN HOUSE WORKS; LUCIE B. McKINNEY, CHAIRMAN,
THE STEWART B. McKINNEY FOUNDATION; JOEY PRESSLEY,
BOARD MEMBER, LAMBDA INDEPENDENT DEMOCRATS;
VELMANETTE MONTGOMERY, NEW YORK STATE SENATOR
FROM BROOKLYN; AND JULIE SANDORF, EXECUTIVE DIREC-
TOR, THE CORPORATION FOR SUPPORTIVE HOUSING

Ms. MENDEZ DE LEON. Thank you. Good afternoon.

My name is Delphine Mendez de Leon and I am the vice presi-
dent for Institutional Development and Planning at the Brooklyn
Hospital Center, a 701-bed multisite tertiary health care institu-
tion with facilities in northern and central Brooklyn.

Before I begin I would like to thank Congressman Towns for his
support of the Ryan White CARE Act reauthorization bill which
was voted out of the House last Thursday. It includes important
pediatric care programs and HIV dental care programs.

Our service area includes some of the most medically under-
served communities in the Nation and the residents of these com-
munities are experiencing health crises of a magnitude usually as-
sociated with Third World countries. Of the more than 500,000 peo-
ple living in our service area of Fort Greene, Bed-Stuy, Bushwick
and Flatbush, more than half are eligible for Medicaid or are with-
out health insurance. Infant mortality rates are more than twice
the New York City average and more than three times the national
rate. On average, there are 5 to 10 physicians for every 100,000
residents, and measle rates are more than three times the national
average, due mostly to low child immunization rates. Due in part
to AIDS, TB has also resurged with a fury and drug resistant
strains are now common in Rew York City hospitals. More than
half of those who contract these forms of TB will actually die.

The residents of these communities rely on hospitals like the
Brooklyn Hospital Center as their primary source of health care in
many instances. When programs or services are unavailable within
the community, many residents lack the information resources to
seek such services outside of the community.

Those who are HIV infected are even less able to fend for them-
selves in the complicated health care and social service environ-
ment of New York City, and it is therefore vital that the Depart-


88

Funding for counseling and testing services for pregnant and breastfeeding women are
essential. Current prenatal education programs must be expanded t6 include substantial
counseling and to encourage pregnant women to be tested. Those who test positive must be
encouraged to take AZT. Yet, many pregnant women seen in our clinics and at our walk-in
sites are both ineligible for Medicaid and uninsured. For this reason, HHS must take the lead
in carving out reimbursement for the use of AZT by pregnant women and provide increased

grant funding for outreach and education programs for pregnant women and women at risk.

It is always helpful to provide illustrations of cases in point which highlight the need to
expand funding for pediatric and dental AIDS services.

The Brooklyn Hospital Center maintains an average daily occupancy of 40 neonates - infants
born premature - in the largest Neonatal Intensive Care Unit in Brooklyn. Approximately 170
of these babies each year will go on to be diagnosed with AIDS. The difference in
presentation and treatment of these children varies enormously and, in most cases, can be
better controlled if the mother’s high risk status is known at birth. Ata minimum, the
Hospital Center’s NICU experience highlights the need for additional Ryan White monies to
be provided for intensive counseling for at risk pregnant women to encourage them to be
tested so that both they and their unborn children can have the best shot at healthy and

longer lives.


43

To increase accountability for quality of care the Department recommends the
establishment of performance measures that are mutually negotiated between the
Federal government and grantees. Treatment regimens for HIV disease have become
more firmly established over time, yet they continue to change as new medical advances
are incorporated into practice. Providers in community-based settings, especially those in
rural or remote areas or those with low HIV caseloads, would benefit from a
coordinated effort to provide current information on quality of care standards. The
Department recommends a provision for allowing the Secretary to establish, in
consultation with State grantees, providers, and affected communities, recommendations
for a minimum drug formulary. State drug formularies currently range from one drug -
AZT - to all Food and Drug Administration approved drugs for HIV and opportunistic
infections, creating an issue of inequitable access to HIV treatment based on residence.
Establishment of a recommended minimum drug formulary will provide States with a
standard by which they can compare their treatment program. Finally, the Department
proposes that all grantees be required to implement quality assurance procedures based
‘on quality of care indicators developed through a collaborative process between the
Department, professional associations, national organizations and representatives of HIV
service organizations, and grantees funded under the Ryan White CARE Act.

‘The Department also recommends that the legislation explicitly identify substance abuse
treatment and programs as eligible uses of funds. Because the legislation does not
specifically identify substance abuse treatment as a fundable service, some local
jurisdictions may believe they cannot use Ryan White CARE Act funds for this purpose.
Legislative revisions to the Ryan White CARE Act would clarify that funds may be used
to address the unmet substance abuse treatment needs of persons with HIV disease, as it
directly affects the ability to retain such persons in HIV treatment.

Several proposals are being recommended by the Department to strengthen the
participation of all relevant stakeholders in loca! planning and priority setting processes.
For Title 1 of the legislation, the Department is requesting that a required minimum of
25 percent of the Planning Council membership be composed of persons with
HIV/AIDS, and that such membership be reflective of the demographics of the HIV
epidemic in the EMA. Further, the Department recommends that the required
membership of the Planning Councils be revised to enhance representation.

The Department is also recommending proposals to streamline the Ryan White CARE
Act by increasing coordinated planning among all Federal HIV-related programs. In
addition to expanded representation on Title I Planning Councils, increased coordination
for planning is being proposed through the establishment of a State-level assessment of
HIV-related needs and resources. A more comprehensive array of entities and other
grantees funded under the Ryan White CARE Act within the State would be included in
the development of a State-level assessment of need. The requested requirement for a
State-level assessment of HIV-related-needs and resources would ensure that the needs
of people with HIV are identified and addressed in a more comprehensive and consistent

12


129

1. The Problem

In recent years, New York City has become the epicenter of the inter-related
epidemics of HIV/AIDS, substance abuse and tuberculosis (TB). According to the 1995
Interim HIV/AIDS Strategic Plan for the City of New York, close to 200,000 New
Yorkers may be infected with HIV. According to the New York City Department of
Health, there were 16,963 adults living with full blown AIDS at the end of 1993, The data
on New York City’s current HIV/AIDS population bears out a national trend: the
population is shifting from gay white males to racial minorities and women. It is estimated
that close to three-quarters of the people with AIDS in New York City are racial
minorities: 42% are African American and 32% are Latino.

New York City’s changing HIV/AIDS population is increasingly at risk of
problems that compound conditions of poor health, including substance abuse (particularly
intravenous drug use), mental illness and homelessness. Measuring the exact number of
homeless people with AIDS is extremely difficult. However, it is estimated that 10-25%
of the 50,000 homeless individuals in New York City are HIV-infected. On the streets
and physically weakened by the ravages of substance abuse and poverty, this newly
emerging population with AIDS is much more likely to succumb to illness at an early
stage, and is much more vulnerable to contracting TB, particularly multiple drug-resistant
forms of the disease.

One of the major causes of homelessness among people with AIDS is the episodic
and unpredictable nature of the illness. Because people with AIDS occasionally become
sick and are unable to work for stretches of time, they can easily lose their sources of
income, their job, and ultimately their housing. Once they no longer have stable housing,
they are often unable to maintain the nutrition, hygiene and medical treatment that is
necessary for them to sustain good health. They then become trapped in a cycle of medical
and psychological crises, necessitating costly emergency care. In order to avoid
homelessness, studies show that more than half of all people with HIV and AIDS will need
some form of housing assistance.

There are many barriers to effectively treating the homeless population with AIDS.
Because homeless individuals with AIDS must concern themselves with basic safety and
survival, they are not in a good position to access HIV-related services, and when they do,
they often do not follow a steady treatment regiment. This is especially problematic in
instances of TB-infection, when a lapse in treatment can cause the person to develop
multiple drug-resistant TB.

There are no comprehensive, reliable data on the homeless population with
HIV/AIDS and other special needs in New York City, however, it is believed that:

© Approximately 80% of the HIV homeless are male, and 20% are female, Two-thirds
are either African American or Latino.


113

Our organization is extremely concerned about the development
of an HIV and AIDS care prevention service network not only in
Brooklyn but across our city, State and country as well—a network
designed to provide a vigorous response to the havoc that AIDS has
and will wreak on communities across this Nation. The Ryan White
CARE Act and the Community Prevention Planning and Housing
Opportunities for People with AIDS structures are steps in the
right direction. Unfortunately, more work is needed. This network
must support, undergird, expand and enrich many existing serv-
ices, some of which were developed in the 1980's. Just as impor-
tantly, proactive responses must be created to stop the spread of
HIV and AIDS in underserved communities before they become
decimated by AIDS.

The development of proactive responses to stem the tide of the
AIDS epidemic in underserved communities has been slow at best.
This is clearly exemplified in the development of services for com-
munities of color. During the early years of the first decade of the
AIDS crisis, advocated forewarned government officials that com-
prehensive and culturally appropriate services needed to be devel-
oped reaching people of color communities. These visionaries saw
that the AIDS cases would explode within communities of color if
programs providing a full range of culturally competent and sen-
sitive services, including prevention multili education services
in languages other than English and Spanish were not developed.
These forward thinking people saw the need to develop powerful
community responses to HIV and AIDS in traditionally under-
served and historically disadvantaged people of color communities.

Although HIV and AIDS programs have been developed
targeting communities of color, many would a1 that the govern-
ment’s response is a case of too little too late. Of the 75,633 cumu-
lative cases reported in New York City as of March 1995, 53,730
or 71 percent were amongst people of color. As of May 31, 1995,
blacks and Latinos made up 81 percent of all cases between the
ages of 20 to 24 in New York City, While well over 90 percent of
these cases occurred in black and Latino communities, Asian Pa-
cific Islanders and Native people have experienced an increase in
caseloads in their respective communities as well. During 1994
there was a 24-percent increase in New York City adult AIDS cases
amongst people of color. Women of color make up almost 90 percent
of all female AIDS cases. From December 1992 to March 1995,
there was a 106——

Mr. Suays. Is that in New York City?

Mr. PRESSLEY. In New York City.

Mr. SHAYS. 90 percent?

Mr. PRESSLEY. 90 percent. From December 1992 to March 1995
there was a 106-percent increase in the number of AIDS cases
amongst women of color. HIV and AIDS is not simply emerging in
communities of color. The disease has emerged and has caused
much pain and despair within communities of color. Black and
Latino people have especially ravaged by AIDS. More cul-
turally competent and appropriate services are needed to stem the
tide of the epidemic amongst people of color—services which will
even better address the diversity of communities of color.


122

Lambda Independent Democrats Page 8

affiliated with community based services because many programs only address men
who identify as Gay. One individual recently told me of a caseworker who told a self-
identified Bisexual client that "it would difficult for her to render services because she
simply had problems with the Bisexual lifestyle." As a result, MSMs are often not
exposed to a great deal of information. Many, including those of color residing in this
borough of Brooklyn and across the city, are often forced to travel outside of their

communities to seek services sensitive to their needs.

Services must be developed to reach MSMs where they live, regardless of how they
identify. Existing organizations, such as Brooklyn's People of Crisis and New York
City's Gay Men of African Descent, which are organizations created by and expressly
serving Black men who have sex with other men, must be strengthened to meet the
needs of this rapidly increasing group. Similar organizations must be created and
supported in other People of Color Communities. Furthermore, as needed resources
are channeled into communities of Color, existing and new programs must be better
armed to provide sensitive prevention and care services to men of Color who have sex
with men so that people will not have to leave their communities to access services and
receive information on how to prolong and save their lives and save the lives of their

male and...yes... female partners as well.

The AIDS epidemic is not static and is not predictable (just ask those from the early
years of the first decade who did not seriously consider that AIDS and HIV would


127

minimum of 5 days per month in acute care bed. His housing cost
is zero, his service and care cost is about $72,000 a year.

Commercial SRO’s. Hospital puts Marty in touch with the city’s
Department of AIDS Services where he learns that he can get a
single room occupancy apartment in a commercial SRO. Without
access to services though, Marty will again be forced to use expen-
sive community care when he becomes ill. Annual housing costs
they are paying to a private landlord, $8,400 to $16,000 a year.
Support service costs, $72,000 a year.

AIDS skilled nursing facility. Marty could be placed in a skilled
nursing facility even though he does not require this level of care
and can continue to live independently given proper——

Mr. Says. You are relating to this, Keith?

Mr. Cy.ar. Yes.

Ms. SANDORF [continuing]. Given sufficient—

Mr. Suays. I feel like I am in a Baptist Church, he is about to
say Amen, he is nodding his head.

s. SANDORF [continuing]. The annual cost of the AIDS skilled
nursing facility, $127,000 to $182,000 a year.

The last option, supportive housing, which could be congregate
supported housing, folks living in one house, supported efficiency
apartments, in an SRO, or scattered site apartments where the
services are provided either through case management at offsite—
all of those options are good and viable depending on the need of
the individual.

Marty chooses to move into the Times Square Hotel which is a
supported single-room occupancy hotel that was renovated and has
provided services to a range of tenants. Marty gets renal dialysis
in the privacy of his own apartment. He maintains regular contact
with an offsite clinic, minimizing hospital stays. He enrolls in com-
puter training. He is reunited with his family, he sits on a tenant
advisory committee, and the annual cost to the city, State and local
government is about $21,000 a year,

I would like to give you another example——

Mr. Suays. Let me just say that we are not going to be able to
get to another example. I am sorry, Julie.

Ms. SanporF. OK.

[The prepared statement of Ms. Sandorf follows:]


CONTENTS

Hearing held on July 17, 1995
Statement of:

Grob, George, Deputy Inspector General for Evaluation and Inspections,
Department of Health and Human Services; accompanied by William
Moran, regional inspector general from Chicago; Mark Nadel, Associate
Director of Health Policy, U.S. General Accounting Office: Dr. Eric
Goosby, Director of the Office of HIV/AIDS Policy, Department of
Health’ and Human Services; and Dr. Steven Bowen, Director of the
Ryan White. Program at the Health Resources and Services Administra-
tion

Mendez de Leon, Delphine, the Brook! oklye and Caledonian Hospitals Insti-
tutional Advancement; accom; Dr. Monica Sweeney, medical
director, Bedford Stuyvesant Family Health Center; Keith Cylar, co-
executive director, Brooklyn House Works; Lucie B. McKinney, chair-
man, the Stewart B. McKinney Foundation; Joey Pressley, board mem-
ber, LAMBDA Independent Democrats; Velmanette Montgomery, New
York State Senator from Brooklyn; and Julie Sandorf, executive ‘direc-
tor, the Corporation for Supportive Housing ..

Mojica Dr. Benjamin, acting commissioner, New York City De orient

f Health; accompanied by Dr. Nilsa Gutierrez, director of
thetitae New York State Title II Grantee; and Debra Katz, Atbs
program coordinator, Stamford Department of Health, State of Con-
necticut Title II Grantee ....

Shays, Hon. Christopher, a Representative in Congress from the State
of Connecticut ...

Towns, Hon. Edolphus, a Representative in Congress from the State
of New Yor

Letters, statements, “ete, submitted for the record by:

Cylar, Keith, coexecutive director, Brooklyn House Works, prepared state-
ment of . .

Goosby, Dr. Eric, Director of the Office of HIV/AIDS Policy, Department
of Health and Human Services, prepared statement of .

Grob, George, D ope ty Inspector General for Evaluation and Inspections,

Department of Health and Human Services, prepared statement of .......

Gutierrez, Dr. Nilsa, director of the AIDS Institute, New York State
Title II'Grantee, prepared statement of

Katz, Debra, AIDS program coordinator, Stamford Department 0
State of Connecticut Title II Grantee, prepared statement of ...

McKinney, Lucie B., chairman, the Stewart B. McKinney Foundation,
prepared statement of ..

Mendez de Leon, Delphine, the Brooklyn and Caledonian Hospitals Insti
tutional Advancement, prepared statement of

Mojica, Dr. Benjamin, acting commissioner, Ne
of Health, prepared statement of

Nadel, Mark, Associate Director of Health Policy, U.S. General ‘Account
ing Office, prepared statement of ...

Pressley, Joey, board member, LAMBDA Independent Democrats, pre-
pared statement of ..

Sandorf, Julie, executive director, the Corporation for Supportive Hous-
ing, prepared statement of

an)

18

93
31

59
69
103
82
51
19
115
128


145

[Additional material submitted for the record can be found in
subcommittee files.]
1e)


106

‘Washington and state/local governments finally realized they had to join with us in a
long-term commitment to help people with AIDS. How naive we were given the current
attitude of some of your fellow members.

For one brief moment Mr. Chairman I wish to step back in time. Oh about 8 years
or so. White the silence around this nation became deafening, AIDS seemed destined to
periodic discussion only upon the death of some celebrity and then once again became a
faded memory. At the same time, quietly, with determination across this nation people
from diverse backgrounds and life experiences came together with one clearly defined
goal; to develop services and housing for people with AIDS. They drew their strength of
conviction from the death of those they loved, and developed a showcase of case
‘management services, housing, education, and preventive services. We owe an enormous
debt of gratitude to the Gay community for their tireless efforts on behalf of Persons with
AIDS and most of all establishing for all of us models of supportive services to adapt for
‘our own communities. I raise this issue with you today because some individuals in
positions of leadership, namely Senator Helms, would have us believe that people with
AIDS are undeserving of our care. That programs such as Ryan White and HOPWA
should be cut and these moneys be made available to Heart and Cancer Research. Mr
Chairman, I know of no other disease we currently face today that produces such rancor,
bigotry, and continued prejudice.

Senator Helms sullies the office he presently holds by this kind of behavior. He
shames the Senate and this nation in word and deed. Mr. Chairman, if it were in my
power , the Senator and Representatives like him would be asked to resign.

This is certainly no time to pit one disease against another. The argument that
AIDS receives a disproportionate amount of dollars compared to Cancer or Heart is
without merit, and T oppose such a position. Comments by Senator Helms and a few of
our elected officials have been cruel, bigoted, and unnecessarily mean spirited. Why are
‘you so silent when one of your own says something so contemptable?

Tsubmit to you Mr. Chairman a nation is measured by how well it takes care of
the least fortunate amongst us. Those of you who sit on important committees such as this
need to remember that the seat you hold and those you represent go beyond the borders of
your own districts. The decisions you will make affect thousands of men, women and
children across this nation.

We Jook to you to continue your partnership with us so the people with AIDS can
continue to be served with compassion, love, and equality; the same equality you would
expect to receive if you were in their position. My husband served nine terms in congress
and without a doubt demonstrated to his district nation and peers what compassion,
fairness, and concern for our neighbors in time of need was all about. If he were here he
‘would most assuredly support the re-authorization of the Ryan White Care Act.

In the state of Connecticut, HOPWA has proven to be a highly successful
program. Of the eighteen AIDS residence programs currently operating in the state,
seventeen use federal HOPWA dollars for supportive services and rental assistance. All
of the HOPWA money coming into the state currently is allocated. In addition,
Connecticut has been the recipient of HOPWA awards for Special Projects of National
Significance in 1994 and 1995. In short, the HOPWA program has served as a critical
piece of the federal-state-private sector partnership to provide quality services and safe,
supportive housing to people living with AIDS/HIV in our state. These residential

comet


66

Mr. Says. Thank you, Doctor.

Mrs. Katz.

Mrs. KaTz. Thank you, Chairman, and Congressman Towns for
having me here. I am particularly honored as your constituent. I
will be speaking primarily today on some Stamford initiatives, al-
though they are widespread throughout Connecticut along with
many other initiatives in that State. I also would like to say that
the State of Connecticut Legislature does fund six needle exchange
programs in the State of Connecticut, Stamford has one. They will
not be talked about in this presentation since I am focusing on
Ryan White.

In the State of Connecticut the devastating impact of the AIDS
epidemic on racial minorities and women has long been evident
and a response to address this issue has already begun. More spe-
cifically, as AIDS program coordinator for the city of Stamford, I
can testify that our local statistics have for many years been in-
creasingly demonstrating the toll AIDS is having on Latino and Af-
rican-American communities and women. Presently 68 percent of
AIDS cases in Stamford are minority and the rate of AIDS cases
in the last 2 years has increased by 130 percent in women.

Stamford received its first Ryan White title II grant in November
1993, and its first Ryan White title I grant in April 1995, so initia-
tives discussed in this testimony are fairly new. Initiatives also in-
volved both funding from Ryan White title I and title II.

The Stamford Ryan White Program is based on an HIV case
management model. Case management clients for the Stamford
Ryan White Program already reflect the impact HIV is having on
both minority communities and women. Eighty percent of the cli-
ents served are minority; 43 percent are women. The breakdown of
transmission risk of Stamford’s Ryan White clients also dramati-
cally represents the changing nature of the AIDS epidemic; 9 per-
cent are homosexual/bisexual, 40 percent intravenous drug users;
27 percent resulting from heterosexual transmission, and 14 per-
cent perinatal.

Our HIV case managers must be and are culturally and linguis-
tically diverse to enable us to optimally serve minority commu-
nities. Language and culture can be barriers to care and we must
make services diverse.

Services must also be available and provided in areas that reach
women and minority communities. In Stamford, the HIV Primary
care medical clinic is located at the Stamford Community Healtl
Center. The Stamford Community Health Center is located in a
building that offers many antipoverty community services, and
therefore, the location is both familiar and convenient for many
women and many members of the minority communities.

In addition, due to Ryan White funding, those uninsured or
underinsured have not been restricted in any way from receivin;
vital HIV care. To serve women and racial minorities it is crucial
that lack of health insurance not provide a barrier to care. Many

ersons with HIV infection work full- or part-time with poor if any

ealth insurance and are often not eligible for Medicaid or Medi-
care.

Transportation to HIV services also becomes a critical obstacle in
serving HIV impacted communities where financial resources are


52

among Native Americans and Native Alaskans since the beginning of the epidemic.

‘Women now constitute 23% of all cumulative AIDS cases in New York's Eligible Metropolitan Area
as defined by the Ryan White CARE Act. More than half of these HIV-infected women appear to
be concentrated in three poor, largely Black and Hispanic, communities -- the South Bronx, Central
Brooklyn, and Upper Manhattan -- where the health care and social service infrastructure requires
continuing and increased support. Also, many HIV-infected women are single parents, often with
HIV-infected children. Therefore, effective service delivery to this population must not only
encompass their immediate medical needs but also provide services such as day care or home
attendants which enable women to access the medical and social services they so desperately
require. It is also important to stress the toll AIDS takes on the lives of the uninfected, In 1993, the
Orphan Project, a not-for-profit organization, found that in New York City alone, AIDS had
orphaned 5,400 children under 12 and 5,400 children between 13 and 17.

‘This changing face of the epidemic, the co-morbidity of HIV with tuberculosis, sexually transmitted
diseases, and mental illness, and the presence of social problems including homelessness have
served to complicate delivery of vital health services and prevention activities. The HIV/AIDS
epidemic in New York City, therefore, presents unique challenges to service delivery. It has become
continuing challenge, indeed, to provide accessible, effective, and affordable services to these
various communities with their own specific needs

‘The Ryan White CARE Act has funded critically needed AIDS service programs within and outside
of the Department of Health. Ryan White monies support innovative and effective programs that
address the very complex needs of a sometimes difficult to reach population - programs which
would disappear without this crucial funding, leaving these communities cruelly under served.
Unlike Medicaid and other local entitlement programs, Title I gives us the flexibility to respond
quickly to the shifting needs created by the HIV/AIDS emergency. Although Title I funds are used
for services to HIV-infected people and not for prevention, we believe that the Title I program has
helped to curtail the spread of the epidemic, since participation in services motivates people to adopt
safer practices that reduce the likelihood of transmission. As the AIDS epidemic increasingly affects
2


101

in comparison. I am compelled to say as well, if you as individuals
have concerns about the necessary funds to meet a national emer-

ency, AIDS strikes me as one such example that has yet to receive
the necessary funds to meet the challenge of this global pandemic.

Today’s hearing is timely, given the current debate in Washing-
ton over budget concerns, with many opposing representatives jock-
eying to find appropriate solutions to this Nation’s financial woes.
Presently, citizens and politicians alike around this Nation are ask-
ing whether we can afford to provide services, housing, and medical
care for persons with special needs; or should we?

Well, I am here to tell you, how can we afford not to? What will
be the cost if we do nothing? If our housing programs were to end
tomorrow, we could be forced to return to options that were avail-
able 15 years ago—the streets, the shelters, or the hospitals. In
Connecticut, the average cost of utilizing a hospital bed is about,
$1,000 a day; while supportive housing costs combined with case
management averages about $40 a day. Hundreds of millions of
dollars would have to be spent by taxpayers in my State alone if
the only options were hospitals and nursing homes.

We as service providers began to rely on your consistent pattern
of commitment to the needs of persons with AIDS. Organizations
like mine began to believe that Washington and State/local govern-
ments finally realize they had to join with us in a long-term com-
mitment to help people with AIDS. How naive we were, given the
current attitude of some of your fellow members. Specifically. Sen-
ator Helms, who would have us believe that people with AIDS are
undeserving of our care. That programs such as Ryan White and
HOPWA should be cut and these moneys be made available for
heart and cancer research. Mr. Chairman, Mr. Towns, I know of no
other disease we currently face today that produces such rancor,
bigotry and continued prejudice.

enator Helms sullies the office he presently holds by this kind
of behavior. He shames the Senate and this Nation in word and
deed, and if it were in my power, Mr. Chairman, the Senator and
Representatives like him would be asked to resign.

Mr. Suays. I might say that he also shames the Republican
Party as well.

Mrs. MCKINNEY. Yes, he certainly does.

I submit to you, Mr. Chairman, a Nation is measured by how
well it takes care of the least fortunate amongst us. Those of you
who sit on important committees such as this need to remember
that the seat you hold and those you represent go beyond the bor-
ders of your own districts. The decisions you will make affect thou-
sands of men, women and children across this Nation.

We look to ou to continue your partnership with us so the peo-
ple with AIDS can continue to be served with compassion, love, and
equality; the same equality you would expect to receive if you were
in their position. My husband served nine terms in Congress and
without a doubt demonstrated to his district, Nation and peers
what compassion, fairness and concern for our neighbors in time of
need was all about. If he were here, he would most assuredly sup-
port the reauthorization of the Ryan White CARE Act.

Furthermore, what is presently happening in ethnic and minority
communities is that they are increasingly harmed by HIV disease.


26

Mr. SHays. Thank you very much. We have heard from the In-
spector General, the GAO, and now Mr. Goosby, we welcome your
comments.

Mr. Goossy. Thank you Mr. Chairman and Mr. Towns. I appre-
ciate the opportunity to provide testimony on behalf of the Depart-
ment of Health and Human Services.

I am Dr. Eric Goosby, Director of the Office of HIV/AIDS Policy,
within the Office of the Assistant Secretary for Health. I am accom-
panied by Dr. Steven Bowen, the Associate Administrator for AIDS
at the Health Resources and Services Administration.

Mr. SHays. I was wondering where he was and how he escaped
getting sworn in. Feel free to come on and——

Mr. BoweEN. I will at the end.

Mr. SHays. I am going to ask you again, I am using your time
a little bit. I would fike you to really speak much louder than you
are speaking.

Mr. Goossy. The program is a vital component of the Public
Health Services’ effort to combat the continuing HIV epidemic and
has been highly successful in creating models of integrating Fed-
eral, State and local efforts to meet pressing needs for accessibility
and access to appropriate care.

We have counted the numbers in the epidemic, but the numbers
do not tell the whole story. The face of the epidemic continues to
change, inereasingly affecting women, children, adolescents, minor-
ity groups and other underserved populations. It is an expansion
of the epidemic and not a movement from, and that all the origi-
nally identified groups that were present in 1981 continue to mani-
fest and predominate in 1995.

A 1993 survey in several States with HIV reporting found women
accounted for 54 percent of newly identified HIV infection among
young youth aged 13 to 19, and 35 percent of reported HIV cases
among people 20 to 24 years old. This trend brings with it greater
numbers of children born with HIV infection, as we have heard,
and tell the benefits of perhaps the O76 trial and the administra-
tion of AZT may help to impact on those numbers.

Minority populations have been and continue to be disproportion-
ately affected by the HIV epidemic. Initially a disease primarily
among gay white males, within a few years the proportion of cases
among African-Americans and Latinos exceeded their representa-
tion in the U.S. population. In 1993 and 1994, over one-half of
newly reported cases were in minorit, groups, although minorities
account for only one-quarter of the U . population. In 1993, 38
percent of reported cases were African-American and 18 percent of
Hispanic descent. Minority women have been_particularly im-
pacted, with three-quarters of new 1994 AIDS cases occurring
among women reported within the African-American and Hispanic
communities.

The changing face of AIDS also includes a greater proportion of
diagnosed individuals who have no health insurance. A 1993 stud:
showed only 26 percent of persons with AIDS had private heal
insurance; 62 percent were covered by some form of public insur-
ance; and 12 percent were uninsured, reducing the likelihood they
will receive cost-effective prophylactic medications and timely pri-
mary care,


22

MINORITIES, WOMEN, AND INJECTION DRUG USERS
ARE RECEIVING RYAN WHITE SERVICES

Even as the profile of the AIDS epidemic is changing, local service
delivery systems appear to be reaching increasing numbers of HIV-
infected minorities, women, and injection drug users. This is
especially important because minorities are becoming infected at a
greater rate than whites. For example, African-Americans represent
12 percent of the nation's population but accounted for 33 percent
of the cumulative AIDS cases as of December 1994. Similarly, while
Hispanics represent 9 percent of the population, they accounted for
17 percent of the cumulative AIDS cases. Another indicator of the
changing profile of the epidemic is that as of September 1989,
African-Americans and Hispanics accounted for 43 percent of
cumulative AIDS cases, women for 10 percent, and injection drug
users for 21 percent. By 1994, the distribution of newly reported
AIDS cases was 58 percent African-American and Hispanic, 17 percent
women, and 32 percent injection drug users.

Access to Ryan White CARE Act-funded medical and support services
for minorities, women, and drug users appears to be in proportion
to their representation in the HIV-infected population. In our
visits to the five areas* we compared the HIV-infected populations,
which were estimated by the EMAs and consortia, with the number of
clients served for certain periods in 1994 as reported by service
providers. These estimates and reports identified such
characteristics as race/ethnicity, gender, and mode of
transmission.‘ To illustrate the use of services in one city,
Baltimore, figure 1 shows that the use of primary care services is
generally in proportion to or slightly higher than the estimated
HIv-infected population. (See our Jan. 1995 report for further
examples of the distribution of services among affected populations
in the five areas.)

SWe chose these areas on the basis of varying size and demographics
of HIV-infected population, how long they have been receiving Ryan
White CARE Act funding, and the amount of funding. We cannot
generalize the results of our work to all Ryan White CARE Act-
funded EMAs and consortia.

‘At some areas, some service providers did not report one or more
client characteristic, such as gender or risk group. In those
areas, we could not compare all population and client
characteristics.


105

Dear God,

‘You knew I loved my mother and how much we were happy and that she had
AIDS and her suffering, but why did you have to let her die? She was part of my life.
Now I feel bad because she is no longer here to love me anymore. You took her away
from me and 1 will never forgive you. She was my mother, but you took he r from me.
She probably doesn't even know me because she is having a great time in heaven. I feel
bad.

PS. I will forgive you because I love you and you did that for a reason so she can

be happy and I also forgive you because you are my father.
Love you Mom and God
Love Onivea

Dear Lucie and Gary

T think of you often so I am writing to let you know how very grateful I am .All
that I have and ali that {am becoming was made possible by your foundation. You have
given me a SAFE place to raise my children and that is so important to me. Ever since we
have been in the house, } have grown so much. I get to send my son off on the bus each
morning and be there for him when he gets home. I'm enjoying watching my daughter
play in a safe home, wondering where would we be if it weren't for your foundation. I'm
enjoying cooking and cleaning (really!) and washing my family's clothes. I enjoy walking
ut to get my mail. I enjoy drinking my coffee at night and reflecting on my day almost
past. I enjoy calling my son in for the night, explaining to him that the day is almost over
and that he needs to get ready for bed. You may think this is trivial, but these are the
things that make me fee! like a human being, a part of society. This home has given my
family consistency. My son no longer asks, "Mom where am I going to going to school
next year?" He now talks about going to Fairfield high school and all the sports he wants
to play there. These are the things that make my life so fulfilled. Stop by any time. You
will see that your house is my home where I am raising my children. To that T owe you
everything. God bless you and your people and all the hard work that you do. And thank
you for our new life. Love Jeannie and the children

Im here to tell you ladies and gentlemen, how can we afford not to? What will the
cost be if we do nothing? I remind you that presently HOPWA funds provide dollars for
approximately 50,000 people with AIDS nationally. In Connecticut. we have a total of
5,816 cases of AIDS which translates into 54 AIDS cases per 100,000 population,
ranking our state 11th among all states. Approximately 20,000 people are infected with
HIV disease in Connecticut... A significant number of people living with HIV/AIDS are in
need of Supportive Housing. As of December 1994, 1,122 people requested supportive
housing, but only 125 could be assisted because of lack of space or inappropriate
supportive services.

If our housing programs were to end tomorrow, we would be forced to return to
options that were available 15 years ago- the streets, shelters or hospitals. In Connecticut,
and I suspect around the country, the average cost of utilizing hospitals beds is about
$1,000 to $1,100 a day, while supportive housing costs combined with case management
averages about $40 to $75 a day. Hundreds of millions of dollars would have to be spent
by taxpayers in my state alone if the only options were hospitals and nursing homes.

"We as service providers began to rely on your consistent pattern of commitment
to the needs of persons with AIDS. Organizations like mine began to believe that

Pa 353)


‘The Role of the Ryan White CARE Act

The Ryan White CARE Act is a carefully designed program targeted to address the
pressing need for accessible and appropriate care resulting from the HIV epidemic in
cities and towns across the country. It is founded upon a strong partnership between the
Federal government and States and local communities, to maximize resources and efforts
at every level for a coordinated response to the epidemic.

‘The purposes of the four Ryan White CARE Act titles differ somewhat as they target
specific aspects of the epidemic. Title I is intended to provide substantial resources to
cities facing high HIV/AIDS caseloads, to sustain and develop systems of care that
emphasize a continuum of services and reduce inpatient burdens. Title II enables States
to improve the quality, availability and organization of health and support services for
individuals with HIV disease and their families more broadly throughout each State.
Title I1I(b) provides primary medical care and other services through health centers in
underserved areas which face an increasing demand for HIV care. Title IV combines
the goals of pediatric HIV research with family-centered health and support services to
meet the unique needs of adolescents, children and their mothers for HIV care.
Together the titles function to put in place a strong national/State partnership to
respond to the effects of the epidemic.

The Ryan White CARE Act supports the development of systems of care which are
responsive to local needs and resources. Health and support services are too often
fragmented, overwhelmed in high incidence areas, and nonexistent in others so that
access to cost-effective care is jeopardized. Through a structure of locally determined
needs assessments and funding decisions, the Ryan White CARE Act provides the
backbone for communities to address gaps in services and enable people with HIV to
access and stay in care. The Ryan White CARE Act has also assisted States and
communities to plan ahead for service delivery needs in areas where the number of
HIV/AIDS cases may still be low.

Several factors have substantial implications for the Ryan White CARE Act as a service
delivery program. Increasing availability of HIV counseling and testing activities have
made more people knowledgeable of their HIV status, raising demand for care. People
with HIV are also living longer due to improved treatment strategies and the availability
of a growing cadre of health professionals knowledgeable in the care of HIV disease,
which were supported by the Ryan White CARE Act and the AIDS Education and
Training Center Program. This rising demand, along with the increasing impact of HIV
in communities and populations with unique and multiple needs for access and care,
significantly affect the background in which the Ryan White CARE Act is placed.


115

TESTIMONY OF LAMBDA INDEPENDENT DEMOCRATS
July 17th 1995

'd like to thank Chairman Christopher Shays, Congressman Edolphus Towns, and the
Subcommittee on Human Resources and Intergovernmental Relations of the Committee

on Government Reform and Oversight for inviting me to speak at this hearing regarding

“AIDS in the ‘90s: Service Delivery to Emerging Populations."

My name is Joe Pressley and | am here today testifying on the behalf of Lambda
Independent Democrats, which is a Brooklyn-based Lesbian and Gay political
organization focused on articulating the concems of Lesbians and Gays in the political
arena. During election years, Lambda conducts candidate forums which we use to
endorse individuals seeking publicly elected offices on all levels of government serving
the borough of Brooklyn. Lambda is also bent on providing information through
‘community meetings and its monthly newsletter to guarantee that its constituents have
a heightened impact on the shaping of importance to us in the political arena.

As we move even further into the second decade of the HIV and AIDS epidemic, there
is still no end in sight to the ravage and despair caused by this disease—a disease
which has rapidly become the health crisis of this country. Statistics clearly depict that
the number of People Living with AIDS continues to escalate by leaps and bounds.
The Centers for Disease Control reports that AIDS is now the leading cause of death
for men and women between the ages of 25-44. Health authorities estimate that
350,000 citizens of New York State are HIV positive. As of March 31, 1995 nearly


136

Mr. Suays. It is 15 after—why don’t we just—there are some
questions that need to be asked.

Ms. Sanporr. OK, just in conclusion ——

Mr. Suays. I apologize. I did not know you were on the witness
list, it says you were accompanying Mrs. McKinney, it did not say
you were to testify. I am sorry.

Ms. SanDorrF. OK, just to conclude. The dollars that are spent on
community-based supports with community-based organizations
who are the front line providers are the critical dollars that are
going the longest and are serving the best possible way. There is
a neiwork of community-based organizations that are giving you
returns on your investments far more than what you are seeing in
escalated Medicaid costs of not doing this.

Mr. SuHays. So our challenge will be to how we present that to
Congress, because I agree with it.

pits. SanporF. We have great backups, statistics and graphs and
charts.

Mr. SHays. The key is to show that those costs are not long-term
out in the future—

Ms. SANDORF. No.

Mr. SHays (continuing) But that will occur right away, and I
think your story is a good one to do that.

I am struck Y a few things. First off, Mr. Pressley—and I need
these answers fairly short. If I am right, you do not have to go
elaborate.

Are you in a sense disagreeing with the opening presentation of
Panel 1 or are you just qualifying it?

Mr. PRESSLEY. I am not sure—in terms of?

Mr. SHays. Well, they are basically talking about an emerging
population and the feeling I get from you is hold it, this population

as been here a long time.

Mr. PRESSLEY. I think—and I think people sort of mentioned this
earlier—I think part of the problem is that when we start talking
about these emerging populations it becomes almost a case of put-
ting out fires, and what we tend to forget sometimes is that there
are populations out there that will also need continued support and
continued prevention support and care services as well. And I think
what happens also, what really frightens me is the black gay man,
to be quite honest with you, is that I look at this chart and I see
homosexual men as part of the initial population, and then part of
the testimony that I just gave to you is that cases are exploding
amongst men of color, and I do not see that on any chart up here.
And I am wondering what happens—do black gay men and men of
color who have sex with men, do we get left out of the equation
when you talk about new programs that need to be targeted for us.

Mr. Suays. So in one sense, I am getting the sense that it is im-
portant to know that it is emerging; fut we have not dealt with the
entire population adequately enou; h, so it is almost—I guess what
I am saying is the challenge is so big and we are not dealing with
the challenge significantly enough. They are talking about emerg-
ing populations when we have not even dealt with the primary pop-
ulation. It just says do more, but not necessarily change.

Mr. PRESSLEY. Exactly, exactly. And I think also, if I could just
add to that——


58

case finding occurs aggressively and in an aggressive way, and that
we support particular things like permanency planning, which you
may be familiar with, that case management as we know it retains
its character and quality, whether it be in traditional HIV care pro-
viders or in a managed care environment.

[The prepared statement of Dr. Gutierrez follows:]


112

Mr. Suays. Lucie, that is a precious letter, precious letter. We
could all take the Joy of those simple things. Thank you for all the
good work that you have done for so long. She is a real hero, if you

lo not know that.

Mr. Pressley.

Mr. PRESSLEY. Before you start the clock.

Mr. Suays. Before I start—OK, fair enough.

Mr. PRESSLEY. I have invited two of my colleagues here also to
help field questions. One is Colin Robinson, who is the executive
director of Gay Men of African Descent, and also Jeff Haskins, who
is the executive director of People of Color in Crisis.

Mr. SHays. Well, it is nice to have you both here. All three of
you.

Mr. PRESSLEY. Start the clock.

I would like to thank Chairman Christopher Shays, Congress-
man Edolphus Towns and the Subcommittee on Human Resources
and Intergovernmental Relations of the Committee on Government
Reform and Oversight for inviting me to speak today about emerg-
ing populations.

I am here today to testify on the behalf of Lambda Independent
Group Democrats, a Brooklyn-based lesbian and gay political orga-
nization focused on articulating the concerns of lesbians and gays
in the political arena.

As we move even further into the second decade of the HIV and
AIDS epidemic, there is still no end in sight to the ravage and de-
spair caused by this disease—a disease which has rapidly become
the health crisis of this country. Statistics clearly depict that the
number of people living with AIDS continues to escalate by leaps
and bounds. The CDC reports that AIDS is now the leading cause
of death for men and women between the ages of 25 to 44. Health
authorities estimate that 350,000 citizens of New York State are
HIV positive. As of March 1995, nearly 86,794 cases of AIDS were
reported in New York State representing one out of every five re-
ported cases of AIDS in the United States.

New York State leads the Nation in AIDS cases among women.
Females comprise almost 20 percent of all adult AIDS cases here
in New York State. From December 1993 to July 1994, there was
a 17-percent increase in the number of AIDS cases amongst women
in our State, and by the end of 1997 it is believed that the number
of women with AIDS will double from 1992 statistics.

Of the 86,794 reported cumulative cases of AIDS in New York
State at the end of March 1995, 75,633 or 87 percent occurred in
New York City, and in fact New York City has more cumulative
cases of AIDS than Los Angeles and San Francisco combined. As
of March 31, 1995, the Borough of Brooklyn, the geographical base
of Lambda Independent Democrats, had 18,355 cumulative cases of
AIDS representing one-quarter of the city’s total. Some of us know
that if Brooklyn were to secede from New York City, then it would
be the fourth largest city in the Nation; however, many may not
know that if Brooklyn were counted as a city, then it would also
rank fourth in the number of AIDS cases, behind New York, Los
Angeles and San Francisco, as reported by the Brooklyn AIDS Task

‘orce.


16

Mr. SHays. Could you just identify your name again?

Mr. NETBURN. Yes, Mitchell Netburn, the assistant commissioner
for the Ryan White Program at the City Health Department.

Mr. SHays. Does that mean you are in charge of the program?

Mr. NETBURN. Correct.

Mr. SHays. Whenever I hear the word assistant I usually assume
they are in charge.

Mr. NETBURN. in the proposed new language for the Ryan White
CARE Act there is a greater emphasis placed on the planning coun-
cil’s having membership that is reflective of some of the emerging
populations. I think one of the unique things about the Ryan ‘ite
legislation is that it has allowed for some of those local controls
and decisionmaking, and on the Federal level if support can be
given for that, then obviously for the people who are the consumers
and providers of service have more say in the programs being de-
signed, that they will be able to set the priorities that are reflective
of the current epidemic, and that way they can mirror that epi-
demic and on the Federal level support can be given to obviously
funding, but also to maintaining and in strengthening that commu-
nity participation.

Mr. Towns. Thank you very much.

Let me just go back to you, yes, Doctor?

Dr. GuTIERREZ. Can I also respond to that? I think that the heart
of the matter is the absence of health insurance for every person
in the country. I think that you begin to blur some of the lines of
who has and who has not, if everyone can have health care. And
that means that at the Federal level there has to be an impetus
to assure that every citizen in this country has it.

We also have learned from the epidemic a very important lesson,
and that is that the medical model with respect to care for people
in not enough, that the community-based support services is fun-
damental and sometimes far more effective in providing that con-
tinuity of care, those linkages, those referrals that often medical in-
stitutions fail in.

And so the partnership that has been established and in a sense
the empowerment of community-based organizations to provide
very creative programming in the area of social services, legal serv-
ices, housing, and substance abuse treatment has been a lesson for
the medical community. As you know, health care services is
viewed very narrowly as medical care. That is not enough. And if
AIDS has taught us anything, it is that without community-based
services, it does not work.

And I do not believe having worked—having trained at Harlem
Hospital during the epidemic and having practiced there for 7
years in a community health center, I will tell you that our prob-
lem was not access. We were in the neighborhood, the doors were
open and we treated people respectfully; but the single problem
was ability to pay, because the consciousness about people caring
for themselves was there and I think it is bad when we continue
to promote this notion that somehow poor people are not smart
enough to know that it is important to care for themselves.

Mr. Towns. Thank you very, very much. We really need to get
that message across, because when you look at what is happening


28

partnership is also unique. I believe in keeping with the current
trends in Congress, we have from the beginning tried to identify
and maximize State and local responsibilities, not only for identify-
ing needs, but more importantly for specifically targeting allocation
decisions to those needs. Once targeted, the allocation decisions re-
main within the local environment for reaction to and adjustment
of the targeting mechanisms. There has been a cost-effectiveness
within all of the Ryan White programs; I believe that there is data
that is currently available and will be expanded over the next 2
years to show specific movement away from emergency room use,
and movement away from longer hospitalizations.

1 want to briefly turn now——

Mr. Suays. Let me just—you are trying very hard to summarize
for us——

Mr. Goospy. Yes.

Mr. Suays [continuing]. I appreciate it. I think if you could just
try to wrap up in 1 minute; I think it would be unfair given the
task you have.

Mr. Goossy. What have we seen and learned from the Ryan
White CARE Act? We have learned a lot and we have attempted
to incorporate the information that we have identified as problem-
atic in our recommendations for reauthorization of the CARE Act.
The program experience has demonstrated that service delivery in
the early years of the grant is compromised by the need to prepare
or revise inadequately developed existing plans for the coordination
and delivery of HIV care services.

We want to strengthen local autonomy and decisionmaking and
insure the response of the epidemic from region to region. The De-
partment has recommended that private for-profit entities also be
available for Ryan White funding to fill the gaps where private
nonprofits do not exist. We also recommend that the legislation to
reauthorize the CARE Act allow up to 10 percent for title I funds
to be used for in-patient use.

There are several propésals that have been recommended to
strengthen the participation of relevant stakeholders in local plan-
ning and priority settings. This is one of our main priorities. For
title I of the legislation, the Department is requesting that a re-
quired minimum of 25 percent of the planning council membership
be composed of persons with HIV and AIDS.

I will close now with the message that the Ryan White CARE
Act has worked. It has worked because of the ability for multiple
levels of government to define and identify specific needs within
their populations and to target specific resources to those needs.
And I might add that the perpetuation of this focused eting,
the authority being attained in the allocating body, is the key to
an expanding and responsive delivery system. Thank you very
much.

Mr. Suays. Doctor, thank you. I know you had a lot more in your
statement and it will be submitted for the record and will be cov-
ered.

I am going to ask Mr. Towns if he has a question, I will have
one question, then we will get on to our next panel.

Mr. Towns. Thank you very much, Mr. Chairman.


94

Housing Works got its start in a time when government was just
beginning to accept its responsibility to care for people living with AIDS
and HIV. With now more than 40,000 homeless people infected with HIV in
New York City alone, | can't say that we have ever had all the resources
we needed. But, with aggressive advocacy and lots of creativity and
innovation, we have been able to pull together a variety of funding
streams that allow us to meet real human need and to demonstrate what
could and should be done if we could ever generate the political will to
bring the AIDS crisis to an end.

| wish | could say that our demonstrated success was going to result
in a new commitment on the part of government to draw people with HIV
into a network of care. Unfortunately, | fear that service delivery in the
90's will be increasing difficult as the far right increases its political
domination and Congress moves to balance the federal budget by
eliminating federal programs that meet human needs, and block grants the
programs that remain, attaching moralistic restrictions that satisfy a
particular value system not matter how repressive the effect.

The Urban AIDS Crisis

AIDS is a personal tragedy for individuals and a public health crisis
for our nation. While AIDS has spread rapidly to every part of the U.S., it
remains most devastating in New York City and other densely populated
urban areas. New York City has an estimated 23,000 people living with
AIDS and at least another 165,000 people who are living with HIV. These
numbers exceed the entire populations of many American small towns and
middle-sized cities. In addition, New York City has serious epidemics of
chemical dependence, tuberculosis, and homelessness -- factors that
stigmatize people living with HIV and AIDS and make it more difficult and
expensive for them to obtain the services they need. Finally, AIDS has
disproportionately affected New York City's minority communities, with
39% of all cumulative cases reported among Blacks and 30% among
Hispanics, although Blacks and Hispanics make up just 25% and 24%
respectively, of the total population.

Barriers To Service Delivery

There are a variety of barriers that have historically impacted on
the delivery of HIV/AIDS services in general but with even greater impact


those with HIV/AIDS. To gather information for our two recent reports,
“The Ryan White Act: Local Implementation Issues," and "The Ryan White
Act: Examples of Local Coordination," which I am submitting as part of this
testimony, we went to the point of delivery of services in seven major cities
across the country. We spoke with local Ryan White program
administrators, public health officials, medical staff, case managers,
HIV/AIDS patients, lawyers and others knowledgeable about Ryan White

clients.

AS a part of our visits, we reviewed funding and service plans along with
progress reports, listened to issues discussed and deliberations held at
planning council and committee meetings, visited and observed on-going
operations at a wide variety of local providers who receive funding from a
variety of sources including Ryan White, and we examined minutes of

meetings and other material we collected on site.

We heard in city after city in the course of conducting our Ryan White
studies that HIV and HIV/AIDS is not only a "gay, white male" disease, but

emerging populations, comprised of African-Americans, Hispanics, Native

House Goverment Reform und Oversight Committee Page 2
Subcommittee on Human Resources and Intergovernmental Relations, July 17, 1995


77

in terms of even our funding, that is a problem, because the money
is not going where the problems really are. Yes, thank you.

Mr. SHays. Thank you, everybody, for your testimony. We appre-
ciate your being here.

Our third panel is Miss Delphine Mendez de Leon, vice presi-
dent, Institutional Advancement of Brooklyn and Caledonian Hos-
pitals; and Dr. Monica Sweeney, medical director, Bedford
Stuyvesant Family Health Center. Our third witness is Ms. Helen
Reyes, executive director, Musica Against Drugs; and our fourth is
Miss Leona Fairweather, Caribbean Women’s Health Association.

Our four witnesses, if they are here, if they would stay standing
because we are going to swear you in.

What I am going to do is combine this panel with the fourth
panel and that would be very nice for us because then we could
spend a little bit more time.

Our fourth panel is—and I am going to blow this, I got into a
dispute with my aide on whether it is Klylar or Caylar—Cylar, it
is a combination between the two, both of us were wrong. That is
the way it should be, we can compromise, we are both wrong. Lucie
McKinney, also accompanied by Julie Sandorf. Lucie McKinney is
the Stewart B. McKinney Foundation and Mr. Cylar is the Brook-
lyn Housing Works executive director. And then Mr. Joey Pressley,
board member, LAMBDA, Independent Democrats.

Mr. Towns. I would also like to ask to join this committee is Sen-
ator Velmanette Montgomery, to also join this committee.

Mr. Suays. I would be delighted to have the Senator.

It is nice to have you here, and for the record, would you say
your name again?

Ms. MonTGoMERY. Velmanette Montgomery.

Mr. Says. And you are the Senator from what district?

Ms. MONTGOMERY. From the 18th Senate District in Brooklyn.

Mr. Towns. We are in her district right now.

Mr. SHays. Do you keep a good watch on us?

Ms. MONTGOMERY. Yes.

Mr. SHays. OK, well then you are allowed to stay.

Would you all raise your right hand please? bo you solemnl
swear that the testimony you will give before this committee will
be the truth, the whole truth, and nothing but the truth?

{Witnesses sworn.]

OK, everyone has answered in the affirmative.

Does our transcriber have all of the names that are here? If you
could spell your name?

Ms. MONTGOMERY. V-E-L-M-A-N-E-T-T-E, Montgomery.

Mr. Says. Now let me just tell you our need. We need to get
the 2 o'clock flight——

Mr. Towns. Chairman is being direct, is he not?

Mr. SHAYs. Only because we have—our session starts at 4 today,
a little earlier than we thought it would. And we are going to hear
your testimony, we are going to take 5 minutes. I might show a lit-
tle preference to Mrs. McKinney, but you would understand; not
much though. And then we will—I would like a nice dialog among
us. So this is nice, to have the two panels combined. I think what.
we will do is we will just start right down this way, OK? And so
Ms. de Leon?


83

The residents of these communities rely on hospitals like The Brooklyn Hospital Center as
their primary source of health care. When programs or services are Unavailable within the
community, many residents lack the information or resources to seek such services outside of
the community. Those who are HIV infected are even less able to fend for themselves in the
complicated health care and social service environment of New York City. It is therefore vital
that the Department of Health and Human Services ensure that current funding for
community-based HIV services be maintained and that the Department continue to examine
new ways to assist healthcare institutions in providing adequate care to those infected with

HIV.

The need for HIV services cuts across gender, ethnicity and age. In 1991 and 1992, there
were more than 1,192 new cases of adolescent and adult AIDS diagnosed in northern
Brooklyn and 1,575 in central Brooklyn. In 1993, 382 babies were reported HIV+ in both
northern and central Brooklyn. As of December 1993, 3,391 people were living with AIDS in
these communities, a rate of more than 337 cases per 100,000 people and an increase of
almost 20% since 1989. At The Brooklyn Hospital Center, HIV related-conditions accounted
for almost 1,000 of our 21,000 discharges in 1993 and more than 5% of our total patient days.

While the majority of these cases stem from injecting drug use, many also represent young
women who become infected from their parttiers and children who are born infected or become
infected through breastfeeding, The mechanisms of transmission are preventable, even
transmission from mother to child, but prevention requires concerted efforts on the parts of
government, social service agencies, healthcare institutions and providers and individuals.
Many prevention efforts already in place, such as substance abuse treatment centers,
prenatal care programs and primary care centers that teach safe sex and responsible

behavior, are jeopardized by proposed Medicaid, Medicare and social service cuts.


5

ropolitan level, consortia at the State level; there are various serv-
ice groups that receive grants from these groups, and they in turn
have connections to a wide array of service providers such as peo-
ple who provide Medicaid services, social services. When I use the
word network of care, I am referring to the entire network, both
those that are directly funded by this program as well as those that
are associated with it.

We bring our report to you today directly from the front lines,
from victims, service workers, coordinators and planners, from
many people who see, feel, and touch the disease every day.

Legislative authority for the Ryan White Act was to have expired
last year. In anticipation of that we undertook a series of studies
to examine various aspects of the program, including the study of
the funding formula and various reports that describe the services
provided under the different titles.

The last study that we did resulted in two reports that are relat-
ed to local service coordination. Those are the two that I am going
to talk about today and with your permission I would like those
two studies to be part of the record; we have already provided cop-
ies to your staff. The last study put us on the scene. We wanted
to learn what you cannot learn in books. We wanted to see whether
the network of care was actually working.

So in the summer of 1994, Bill and his team went out and visited
seven cities. They visited and observed the service operations, they
reviewed funding and service plans, they listened to planning coun-
cils and committee meetings, they examined minutes of the meet-
ings they gathered onsite, they held discussions with public health
officials, grant administrators, local service providers, and persons
who were infected and persons who have the AIDS disease. We did
this because we expected to find and to ask the service providers
about problems they might have in delivering services, and our
mind was very much focused on administrative problems, in other
words, what are the barriers that you are facing.

What happened in conducting the interviews is that the
interviewees emphasized to us something that we had heard about,
but were not really very much attuned to. Now in our line of busi-
ness, I call this a screamer. You go out to ask people one set of
questions but they all say, “Now wait a minute, I have got to tell
you about something else.” It is very important—and that is what
happened in these interviews.

What we found out was about this emerging population, the
change in the population. I have illustrated it on the charts that
you see on the right-hand side of your platform. The initial popu-
lation for AIDS we had all seen were primarily homosexual men,
intravenous drug users, and people who were receiving the disease
through the blood supply. Now what we found out when we talked
to the people on the line, they were beginning to emphasize that
we were seeing a different profile here—children, children or-
phaned by AIDS, heterosexual partners, poor women, immigrants.
And of course, these categories emphasized to us were particularly
afflicting the minority populations. These statistics I think are al-
ready pretty much on the record from the opening statement and
we will hear more from our other speakers on this.


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81

women to encourage them to be tested so that they and their un-
born children can best have a shot of healthy and prenatal lives.

We often see children after they have been diagnosed at about
3 years of and these children unfortunately are not known to
us before and their mothers may or may not have been diagnosed
hefore they actually give birth. These individuals generally present.
themselves with severe neurologic problems, malnutrition, and a

eneral failure to thrive. They are incapable of interacting with
their environment and a lot oF them at that point are living with
individuals in a household who are also sick. Pediatricians do what
they can at the Hospital Center.

As was mentioned the medical care model is not enough and
what is urgently required is the coordination of services between
providers as well as community organizations in order to provide
for (a) the community outreach, (b) the prevention, (c) the edu-
cation of these individuals, and finally, once these individuals in
fact are identified as either at risk or actually coming down with
the infection, they need to be put into what we call a continuum
of care, so that once an individual enters into that continuum of
care that individual is then followed, whether it be pre-hospitaliza-
tion, during hospitalization or post hospitalization, so that patient
is followed throughout the entire course of that illness.

(The prepared statement of Ms. Mendez de Leon follows:]


107

programs could not have happened nor will they continue without the on-going
commitment of funds for both Ryan White and HOPWA.

“What is presently happening in ethnic and minority communities is increasingly
harmed by HIV disease. Poverty, isolation, and unequal access to health education and
‘care, as well as the current epidemic of drug use in some segments of these communities,
place many ethnic and minority individuals at increased risk. Public health campaigns on
HIV disease have been slow to reach these communities, and only recently have
culturally appropriate initiatives been instituted in earnest.” In Ct we've successfully
begun to bring together the African American and Hispanic communities where HIV
disease is alarmingly on the rise and have created a partnership that is culturally sensitive
to their respective needs: creating models of prevention, education, and healthcare, that
respect their traditions yet are collectively innovative in dealing with and treating
HIV/AIDS.

“Too often our medical, legal, social service, and educational systems assume that
all families with HIV disease need similar types of services and that all will make similar
decisions regarding the care of children left orphaned. But culture plays a large part in
how one views family, community, and the future. Unfortunately, our current institutional
systems often lack the flexibility to permit decision making based on cultural and social
values that differ from the "American norm."*

In closing, Mr. Chairman I must bring to your attention one last concern of: mine
that could have a detrimental effect on all our successes.

In your efforts to contain costs, various committee members are currently
discussing a managed care approach to slow the growth of Medicare and Medicaid. It has
come to my attention that private H.M.O.s across this country have been denying
benefits for emergency services. Not only, has this created additional obstacles for the
poor, many of whom have AIDS, but it has frustrated the efforts of emergency room
Physicians. This type of cost shifting has placed an unwelcome financial burden on
patients and hospitals. Ultimately, the decision to hospitalize someone should rest solely
with the physicians- not an insurance company or a government agency trying to contain
costs.

Mr. Chairman; There must be a better way to care for our neediest citizens- Today
I challenge you to come up with the solution, Thank you for allowing me the time to
speak to all of you in regard to thiis critical issue.



92

thereby oftentimes do not receive adequate levels of funding. If you
take a look at the recent attacks on HOPWA, the Housin; Oppor-
tunity for People Living With Aids, which is part of HUD, right
now it is being defunded again for the third time within this Con-
gress. HOPWA's services are crucial for many homeless people.

Those dollars provide the only source of housing money for those
individuals. Without those services, without housing, an individual
cannot take advantage of the primary care that they may be pro-
vided through Ryan White, they cannot take care of dental care
that would Be provided through Ryan White. Prevention and edu-
cation messages are lost on individuals when they have to strive
to find a place to live. You cannot survive without those kinds of
things.

en we also look at prevention and education, we get hung up
very much on whether or not we can tell people to use a condom
or not because it is going to promote homosexuality. I have a real
problem with that, because people are dying from this disease be-
cause this disease is being sexually transmitted, and the thing that
will prevent that is a condom. It does not matter whether or not
it is heterosexual or homosexual sex, that is the bottom line. And
somehow in this process we have gotten very much concerned
about judging whether or not a particular act is good or bad and
that has limited the funding, it has limited the research, it has lim-
ited the prevention message that we need to get out to people.

When I say these things, a lot of times people get upset and they
say, “AIDS is an issue within the black community” and histori-
cally that has been the line that we took.

Mr. SHays. Who gets upset? I am sorry.

Mr. Cy.ar. People in general.

Mr. SHays. About what?

Mr. CyLar. About the fact that I talk about homosexuality, that
I talk about the stigmas associated with drug use, and I talk about
the stigmas associated with homelessness. But I believe those are
the real barriers and the misimages, the lack of honesty about
these issues oftentimes clouds how we allocate money, how the po-
litical process views these people, and reflects I think a lack of hu-
manity, reflected in the budget process that is going on both in
New York State and in New York City.

Oftentimes we balance our budgets on the backs of the poor, the
marginalized, and those people are the homeless people, those are
the substance users, and those are the emerging populations that
you see.

So I think when we talk about this disease we need to, No. 1,
be honest, we need to be nonjudgmental, nonmoralistic, and look
at this disease as an epidemic that it is and begin to treat it with
compassion and humanity. I will stop there.

{The prepared statement of Mr. Cylar follows:]


60

Good morning. My name is Dr. Nilsa Gutierrez, and I am Director of
the AIDS Iastitute, the office in the New York State Department of
Health responsible for HIV-related prevention and health care
programs. I appreciate the opportunity to come before you this
morning to address the needs of emerging populations in the AIDS

epidemic.

New York State leads the nation in cumulative AIDS incidence,
accounting for 20% of the total and has a significantly different
profile from that of the rest of the country. New York State has
a greater proportion of injection drug users (50% vs. 31%), women

(20% ve. 13%) and people of color (68% vs. 50%).

‘There are approximately 28,000 New Yorkers living with AIDS and an
estimated 250,000 with HIV infection. AIDS cases in New York are
expected to grow by 65% in the next four years, to a cumulative
total of over 130,000. AIDS continues to be the leading cause of
death among New York males age 30-49 and females age 25-39.
Approximately 80% of New York's AIDS cases are found in New York
city.

While the epidemic continues to heavily impact the gay community,
in New York and in other states, AIDS is increasingly an epidemic
of minorities, women, and injection drug users. New York cases
reported in 1994 reflect this trend: 75% were among minorities, up
from 62% in 1990; 25% were among women, up from 16% in 1990; and
54% were among IV drug users, up from 48% in 1990.


56

Mr. SuHays. We will have some questions. I thank you.

Dr. Gutierrez, that is a mike that does not project; it is just for
the transcriber. You have no mike, that is why you have to speak
loudly. There is no mike on the table. You have a beautiful, loud
voice, and you can Project it. We have taken our mikes away too,
so we can be on equal footing here.

Dr. GUTIERREZ. Thank you for your compliment. I am Dr.
Gutierrez, I am the director of the AIDS Institute——

Mr. Suays. You had a harder time saying your name that I did.

Dr. GUTIERREZ [continuing]. Yes. I am the director of the AIDS
Institute for the Department of Health, and we are responsible for
tracking the HIV epidemic throughout New York State and that
tracking guides us with statewide planning in the areas of preven-
tion, care and support services. So I appreciate the opportunity
being here.

As you have heard, and you know, New York State leads the Na-
tion in AIDS cases and we certainly have the greater proportion of
injection drug users, that is, 50 percent versus 31 percent for the
Nation. We have many more women, 20 percent versus 13 percent
for the Nation, and people of color, 68 percent versus 50 percent.

There are approximately 28,000 people in New York living with
AIDS, with an estimated 250,000 persons with HIV infection. We
expect this to grow over 4 years, up to about 130,000 people, and
as you know it continues to be the leading cause of death in New
York among males the ages between 30 and 49, and women be-
tween the ages of 25 and 39. Approximately 80 percent of New
York’s AIDS cases are found in New York City.

So while everyone knows that the epidemic is alive and well and
still in the gay community, HIV infection in minority communities
amongst women and drug users was well established as far back
as 1987, when AIDS was the leading cause of death in the black
community amongst women. So this is a very, very old story. If we
want to get a sense of the magnitude of the problem over time,
New York cases reported in 1994 reflect the following trend: 75
percent were among minorities, up from 62 percent in 1990; 25 per-
cent were among women, up from 18 percent in 1990 ——

Mr. SHays. I am sorry, just so I am following you—is this 75 per-
cent of new cases?

Dr. GUTIERREZ. Correct, reported in 1994.

Mr, Suays. In the city?

Dr. GUTIERREZ. In New York State, of which the majority are in
the city. And 54 percent were among IV drug users, up from 48
percent in 1990.

As you also know, the HIV epidemic is not identical in all com-
munities, and so if you look at neighborhood-based information,
you can see that for example amongst women the case rate may be
as high as 35, 40 percent. That is important. So what we do, what
the Institute does, is to develop programs and services with both
State and Federal dollars that really strives to establish health and
support services within communities with significant caseloads
with particular needs.

With funds from the Ryan White CARE Act, New York has cre-
ated three reimbursement pools that provide free medications,
home care and primary health care to persons with HIV infection


18

prepared statement we illustrate a figure in Baltimore which illus-
trates the rate of services in Baltimore, and we have a whole set
of figures in our report which show the general proportionality over
a range of different services.

We also asked advocates and various providers in the cities and
they also affirm that the affected groups generally access services
in proportion to their representation in the infected population. But
these use rates of services, however, may not fully explain the need
for services or access to services, although minorities, women and
others, appear to receive services in proportion to the representa-
tion of the population, these groups may have to rely on Ryan
White funded services even more than other groups. Minorities
generally have lower incomes than whites and are much more like-
ly to be without health insurance. Therefore, they are more likely
to depend upon Eyblicly funded services such as those funded by
the Ryan White CARE Act.

T would like to turn now to some of the barriers that may limit.
access to services, and there are many barriers to access for HIV
infected individuals that are particularly difficult to overcome. HIV
infected people who are substance abusers and homeless have dif-
ficulty in seeking services because of the dysfunctional nature of
their lives. For women, lack of child care limits their ability to
make and keep appointments for services. Another problem in
seeking services is the lack of adequate or appropriate transpor-
tation.

In some instances, the lack of knowledge about and the lack of
motivation to seek services affect the extent to which people use
these services. Providers said that some clients are seeking access
to services only in the later stages of diseases, when much less can
be done for them, because of denial of their having the disease or
ignorance of the disease, or a lack of trust in the medical commu-
mity. Also mentioned were cultural and language barriers. Several
providers told us of people’s reluctance to obtain care from provid-
ers who primarily serve a different racial or ethnic group. Some mi-
Norities and women are reluctant to obtain assistance from an or-
ganization that serves primarily a white male clientele or that is
perceived as being oriented toward gays.

Providers, advocates and HIV infected persons whom we con-
tacted acknowledged the benefits of the Ryan White CARE Act in
providing services to all affected populations. However, to help in
overcoming barriers to care, they also recognized the need for local
outreach services, to make infected people aware of prevention, the
availability of services, and the need to get medical attention early
on. Such outreach services can increase the likelihood that HIV in-
fected persons will receive needed services.

This concludes my prepared remarks and I would be pleased to
respond to questions at the conclusion of the panel.

@ prepared statement of Mr. Nadel follows:]


AT

Mr. Towns. Mr. Chairman, I yield back; but before I yield back,
I would like to say that I think that you really make a case in
terms when you talk about access to care for Federal presence, I
really think that it is still important that we are involved in it, and
to say to you that we need to find a way to make certain that the
funding flow follows the problem. Because if you really wanted to
address this situation and do it effectively, then we have to find a
way that the dollars go to where the problems are, and I think that
in some instances that might not be the case. So I am concerned.
about that, Mr. Chairman, and I think we need to continue to look
to make certain that we do address that issue. And I yield back.

Mr. Suays. Thank you, gentlemen.

I know all of you have traveled a bit, and so this is kind of quick
and we should take more of your time, but the message comes
through, and I want to ask fate this. Do any of you disagree with
anything that has been said by anyone else in this table? To me
it is a remarkably consistent message. Is it fair to use this chart,
or others, Mr. Nadel? Is this chart pretty accurate?

Mr. NADEL. That is entirely consistent with our findings.

Mr. SHays. And we are going to call this the Screaming what?

Mr. NADEL. The Screaming Issue, perhaps. ,

Mr. SHays. The Screaming Issue. OK, it is an unexpected issue
that in the course of your investigation became very obvious to you.

Mr. NaDEL. Yes.

Mr. SHays. You were asking one question, you were getting a dif-
ferent answer, and this was the answer you were getting.

Mr. NADEL. Yes.

Mr. Snays. And that opens up the Purpose for this hearing. So
basically you all have served the ball, it is in play now. We are
going to ask your next panel to start to respond to it.

I just want to thank each and every one of you, and you do not
need to stay if you do not want to, and thank you for being here.
I have been told. having been a quasi-New Yorker since I five 30
miles away, that New Yorkers are not bashful, and if you are hav-
ing trouble hearing, you can literally take your chair and put it in
front of us here and around. So if you cannot hear, it is your own
fault. I believe in accountability.

We are going to ask our next witnesses to come, and that is Dr.
Benjamin Mojica, who is the acting commissioner of Health, New
York City Department of Health; we are going to have Mr. Ronald
Johnson, city-wide coordinator, Office of the ayor AIDS Policy Of-
fice; and Dr. Nilsa Gutierrez, director of the AIDS Institute, New
York State Title II Grantee; and then Mrs. Debra Katz, AIDS pro-
gram coordinator, in the great city, the great city of Stamford, my

ome town.

If all of you would come—do not sit down because we are going
to swear you in. And we need new names up front here too.

If you would raise your right hand please? Do you solemnly
swear that the testimony you will give before this subcommittee
will be the truth, the whole truth, and nothing but the truth?

[Witnesses sworn.]

For the record, all have answered in the affirmative. Quietly,
though all did.

We will start with Dr. Mojica, if you would begin.


51

TESTIMONY BY
BENJAMIN MONICA, M.D., M.P.H.
ACTING COMMISSIONER
CITY OF NEW YORK
DEPARTMENT OF HEALTH
BEFORE THE
SUBCOMMITTEE ON HUMAN RESOURCES
AND INTERGOVERNMENTAL RELATIONS.
"AIDS in the ‘90s: Service Delivery to Emerging Populations"
JULY 17, 1995

Good Morning. Thank you for inviting me to testify today on the topic of service delivery to
‘emerging populations affected by the AIDS epidemic.

Every week, close to 200 new AIDS cases are reported in New York City and approximately 130
people dicof this illness. New York City, one of the first areas in the nation to be struck by AIDS,
continues to be the center of this tragic epidemic, with a total of 17% of all AIDS cases in the United
States, although we have just 3% of the U.S, population.

‘The epidemic remains tragically dynamic with an increasing number of cases and some dramatic
changes in the population affected. Since the beginning of this decade, intravenous drug use, as a
risk activity, has been increasing and, indeed, has surpassed sex between men as the leading cause
of transmission for men. There has also been a steady increase in AIDS cases among women with
transmission attributed to substance abuse and sex with infected male partners. Infants bom with
HIV are the tragic outcome of women with HIV infection.

Minorities have been disproportionately affected by the epidemic. Black and Latino New Yorkers
make up, respectively, 25% and 24% of the City population, but over the course of the epidemic,
39% of people reported with AIDS have been Black and 30% Latino, Whites constitute 43% of the
population but only 30% of the AIDS cases. Additionally, women of color are much more likely
than white women to have AIDS. Black women have accounted for 3% and Latina women for
33% of all cases reported among women in New York City. The impact of AIDS is not limited only
to those populations, however: 444 cases have been reported among Asian/Pacific Islanders and 22


80

be funded at levels that permit the provision of regular dental
checkups for Medicaid recipients and for the uninsured.

AIDS patients suffer from some of the most debilitating and
painful oral diseases, diseases that require ongoing care and regu-
lar visits to the dentist. As a result of the immune system break-
down, AIDS patients are more susceptible to oral herpes and ramp-
ant fungal diseases, as well as oral disease found only in patients
who suffer from AIDS, including an extremely painful form of gum
disease that frequently involves exposure of the bone.

Patients who are immunocompromised frequently complain of
painful, aggravating mouth sores. Imagine a mouth full of canker
sores that will not go away; as soon as one heals, another appears.
The pant is incessant, making it extremely difficult to eat or
speak.

The frequency of care required by patients with severe oral dis-
ease means that dental services must be easily accessible for AIDS
patients. Currently, funding for outreach and direct care services
is limited. Only one site in all of New York City, at Woodhull Hos-
pital in Brooklyn, has received Federal funding to provide outreach
and improve the accessibility of dental care for AIDS patients.
More such funding is desperately needed to minimize the pain and
suffering experienced by these individuals. For children with AIDS,
the need is even more pronounced.

As you know, many of these children are orphans who rely on ex-
tended family members for care. Many of these caregivers are re-
sponsible for more than one child with AIDS. Thus, taking a week-
ly trip across the borough to wait all day in a clinic to receive den-
tal care is not feasible or practical. If funding were available, hos-
pitals like the Brooklyn Hospital Center would better be able to re-
spond to this demand. For example, we could staff dental offices
and medical vans that could go into different neighborhoods on des-
ignated days during the week to provide care following an appoint-
ment system.

Unfortunately, the present reimbursement arrangement does not
make an allowance for extra costs such as this that would substan-
tially improve the everyday life of children and adults infected with

Mr. SHays. Could I ask you to summarize at this point?

Ms. MENDEZ DE LEON. Sure.

Mr. SHAYS. It is very important testimony. You will get a chance
at the questions to respond. I would like to encourage the rest,
even feel free to summarize your testimony. We will stay until
about 1:15 or so, so we will have a good dialog among us.

Ms. MENDEZ DE LEON. OK. I wanted to just give you an illustra-
tion of a couple of cases, The Brooklyn Hospital Center has an av-
erage daily occupancy of 40 neonates——

r. SHAYS. You need to talk louder too, I am sorry.

Ms. MENDEZ DE LEON. We have the largest neonatal intensive
care unit in Brooklyn. Approximately 170 of these babies will go on
to be diagnosed with AIDS. The difference in the presentation and
treatments of these children varies enormously. At the minimum,
the NICU experience highlights the need for additional Ryan White
moneys to provide for intensive counseling for at-risk pregnant


Pago 2

* 15% or nearly 10,000 reported AIDS cases in New York
State are among young adults age 20 -29.

* AIDS is the leading cause of death in Bedford
Stuyvesant among adolescents and young adults age 15 -
4a,

* For NYC, from 1989 to mid-1993 the cumulative number

of adult ALOS cases increased by 185.1 percent, to
over 55,000. In Brooklyn, the increase was_over 226
Percent, up to almost 13,000 cases.

As noted from the previous statistics there is a great need
to reach IVDU. One of the programs just instituted et
Bedford Stuyvesant Family Health Center is e group of PEER
counselors. Peer counselors are volunteer infected or
affected by HIV. The PEER counselors are doing outreach to
non-HIV community based organization (CBO), and businesses
to leave literature and condoms in the establishment.
Additionally, HIV talks are given at the same sites,
referred to by our staff as HIV 101.

Another group of volunteers do outreach to teach harm
yeduction, and risk reduction, both to those whose HIV
status is known and to those whose status is unknown,

Other services available in the Community:
* Substance recovery group support.

* Information sessions - e.9., permanency planning
(planning for placement of children on the death of an
HIV infected parent) & leving carefully - demonstra-
tion of safer sex techniques.

* Case management.


135

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13

provides orphan support services, including adoption services, for children of
people who have died of, or are dying of AIDS. These services help prepare
for and fill the gap in services experienced by children and their new
guardians after the parents die. Ordinarily, no benefits wouid be available
after death, but this program helps with transitional benefits for these

children.

These are a but a few examples of how cities and providers are answering

the needs of emerging populations.

Despite these and other efforts by local agencies and providers, service gaps
to these clients exist. Considerable efforts must be made to bring services to
clients’ neighborhoods, or to provide them transportation to services at
reasonable time and expense. Programs for women, minorities, young
people, and the non-English speaking must attract these populations at an
early stage in the disease, not only to provide them services, but to reinforce

the public health message to help slow the spread of HIV/AIDS.

House Government Retorm and Oversight Commitice Page 6
Subcommittee on Human Resources and Intergovernmental Relations July 17, 1995


137

Mr. SHays. You do not have to say exactly because I was fum-
bling around here. It was very gracious, you are a good man. Keith,
excuse me. Your comment in the beginning—basically would you
comment on just what I asked?

Mr. CyLar. I would say that you are right and I would say that
historically that gay men of color, substance users, have always
been disproportionately impacted by this disease. Unfortunately,
the attention has gone to white gay men and that communities of
color have been consistently under-represented when it comes to
targeting funds and targeting solutions.

ir, SHAYS. Ms. Mendez de Leon, as you were speaking, I began
to wonder, is this so-called emerging population as they aske
the beginning not as aware that they may have contracted the dis-
ease? Is this a population that just is kind of left in the dark a lit-
tle about their own condition? Let me ask and also say this to you.
I had not thought about—obviously I should have, but I had not
though about the fact that nursing a child, a child born by a moth-
er HIV positive, the child does not yet have the disease——

Ms. MENDEZ DE Leon. Correct.

Mr. Says [continuing]. I make an assumption that most chil-
dren born of HIV or positive mothers are likely to have the disease.

Ms. MENDEZ DE LEON. No, that is not correct.

Mr. Suays, Incorrect.

Ms. MENDEZ DE LEON. Incorrect.

Mr. SHays. Does anybody have a percent here? Fifty percent?

Ms. MENDEZ DE LEON. I think it is less than that, it is about a
quarter is what I was going to say. About a quarter.

Mr. SuHays. About 25. So the exact—the need to identify those
children born of mothers who in fact have the disease, an extraor-
dinary need to do that.

Mrs. MCKINNEY. No.

Mr. Suays. No?

Mrs. MCKINNEY. I disagree with what you all are doing down
there to identify, to automatically test all the babies. And the rea-
son—there are two reasons, One——

Mr. Suays. I did not get to that, but I was going to.

Mrs. MCKINNEY. Well, that is where you were. One, confidential-
ity is gone. I do not believe in mandatory testing anybody; but, look
at it this way. The mother—by the time you test the baby, if the
baby is HIV positive, there is not much you can do. But if the
mother had found out that possibly she had HIV at the beginning
of her pregnancy, it has been proven that AZT taken by a pregnant
mother cuts that 25 percent of babies down to about 8 percent.

Mr. SHays. But it is also logical, is it not, Lucie, to suggest that
the mother not breastfeed her child?

Mrs. MCKINNEY. Well of course. Well of course. But I am just
saying to you, what is the point of identifying the babies? What are
you trying to get at here? Do you see what I am trying to say?

Mr. Snays. Identifying the babies are identifying the mothers.

Mrs. McKInnev. If you are identifying the babies, you are auto-
matically identifying the mothers. I think there should be much
more of a push to not mandate but counsel the mothers. Say to the
mothers, if you think you are at risk for HIV, if your lifestyle has



and less effective method of care.

Ihave described these services to emphasize the very real ways in which collaborative work between
the federal agencies (HHS and CDC) and localities (DOH) can provide vital and specialized services
to those most in need. I will now be happy to answer any questions you may have.


2

Besides changing demographics, one challenge facing those plan-
ning AIDS services is the changing form of government’s support.
Block grants can enhance local decisionmaking and program coordi-
nation, but to some they represent the frightening prospect of un-
certain funding in the face of relentness need.

While I support such grants, what concerns me about the appro-
priations fiscal 1996 mark for the HOPWA program is the reduc-
tion in funding levels. I do not want to see this program cut when
so Many People are sick and need help, desperately need help. Ac-
cording to the Center for Disease Control, more than 440,000
Americans have AIDS and more than 1 million have HIV. As of
June 1994, African-Americans and Hispanics represented 56 per-
cent of the newly reported cases, and women represented 17 per-
cent, more than halt of whom are between the age of 13 and 19.

Critical in the fight against AIDS is the role of HHS in assisting
States, municipalities and local providers to plan strategically for
the changing face of AIDS in our communities. In this hearing we
will hear how some State, city and private providers are being in-
novative in providing needed services. We will also hear how HHS
is assisting AIDS service organizations to insure that their pro-
grams meet changing recipient needs.

I would like to welcome all of our witnesses here. We have 14
people who will be testifying, so Ed and I are going to try to keep
our questions down. We have four separate panels and both Ed and
I have votes this afternoon, so we have an incentive to be efficient
with our time. Before recognizing my colleague, I again want to
welcome all who are here today. This is a very important hearing,
and I want to put it in this context. We have a report to make to
the full committee and the committee will be taking action; but
both Ed and I are, as I said earlier, going to team up to see how
we can look at the fiscal year 1996 appropriations to see how we
can make changes to it that while not answering all the concerns
I am sure will be raised today will answer some of them.

At this time I would like to call on my colleague, Ed Towns.

STATEMENT OF HON. EDOLPHUS TOWNS, A REPRESENTATIVE
IN CONGRESS FROM THE STATE OF NEW YORK

Mr. Towns. Thank you very much, Mr. Chairman.

Let me begin by saying I really appreciate your leadership on
this issue and I also appreciate the fact that you have this field
hearing in a city that has been and continues to be impacted more
by this disease than any other city in America.

Overall, this Northeast region tragically continues to lead the
Nation in new AIDS cases. Just as this disease begins to impact
new populations, Federal programs are being subjected to major re-
structuring and signifieant. funding reductions. Now more than
ever there will be a need for innovative and cost-effective govern-
ment interventions.

We must recognize, however, that treatment of AIDS patients
and eventual cure for this disease cannot be accomplished without:
continuing support from the Federal Government programs.

Today’s hearing will focus on how services in the 1990’s can be
effectively delivered to emerging populations impacted by AIDS
and HIV infection. Certainly we are hopeful that a cure will be


12

The initiatives highlighted in this testimony are only a few of the
services needed to address the increasing impact of HIV on women
and minority communities. Outreach efforts are needed to bring
these affected communities into the service delivery system. This
system offenunfamiliar and scary to many can be an obstacle to care
if aggressive steps are not taken to reach out to those individuals in
need of the services. As the demographics of the AIDS epidemic
shifts so does the needs of the client. We cannot afford to sit and
wait for those in need to find the service. For many, HIV infection is
only one of many severe stresses in their lives and often there is just
no time to worry about one's health when feeding one's family and
finding shelter are more urgent needs.

In improving service to HIV infected women and minority
community members it is vital that we offer one stop service
whenever possible. To negotiate a complicated service delivery
system is both overwhelming and time consuming. HIV infected
women need to get their medical care at the same time and location
as their HIV infected children. The cost of this not occurring is that
women will often neglect and ignore their own health care because
of lack of time or child care. HIV health care should include; mental
health counseling, support groups, HIV case management, nutrition
counseling, financial assistance, substance use counseling, legal
guidance and other services and should be linked to one's medical
care so we can attend to the needs of the whole person.

In working with women with HIV infection their children must also
be served. Both mental health counseling and legal counseling
become priority services as issues of guardianship and placement
become critical. Families impacted by HIV infection where one or
more family members are infected must be supported in staying
together as long as possible.

As family members can no longer work because of their health, the
payment of their rent or mortgage is often jeopardized due to limited
or lack of housing subsidies. Homelessness often looms dangerously
close for many of these families.

Ryan White funds are critical to the delivery of emergency services
for persons with HIV infection. This funding is even more vital as


27

The compelling public health reasons to address the HIV epi-
demic continue to be those characteristics of a transmissible, fatal
disease which extracts a heavy Price from society in loss of young,
productive lives. Unlike heart disease and other chronic diseases,
HIV/AIDS primarily affects young Americans and curtails their
contributions.

The unique role of the Ryan White CARE Act is to provide a
carefully designed program targeted to address the pressing need
for accessible and appropriate care resulting from the HIV epi-
demic in cities and towns in our Nation. It is founded upon a
strong partnership between the Federal Government and States
and local communities to maximize resource allocation and dis-
tribution, and efforts at every level to coordinate responses to the
epidemic.

The CARE Act has already been outlined for you, titles I thro
IV, so I will not repeat that. Several factors have substantial impli-
cations for the Ryan White CARE Act as a service delivery pro-
gram. Increased availability of HIV counseling and testing activi-
ties have made more people knowledgeable of their HIV status,
raising new demands for care. People with HIV are also livin
longer due to improved treatment strategies and the availability o
growing cadre of health Professionals who are knowledgeable in the
care and treatment of HIV infected individuals from specific,
unique communities. The AIDS Education and Training Center
Program has been stressed in the need to expand to populations
that have heretofore not developed sophisticated delivery systems
for the care of HIV infected person, identifying deficits in under-
standing and education, and attempting to target educational inter-
ventions to the health professionals within those communities.

I want to turn briefly to the accomplishments of the Ryan White
CARE Act. We have essentially seen a marked increase in access
to care. Three hundred and twenty-five thousand people with HIV
disease conservatively estimated having received health care and
support services from the Ryan White CARE Act. We are in a posi-
tion to say without doubt that the systems that have been orches-
trated to deliver a continuum of medical services to HIV infected
individuals have been most effective because of the ability to de-
velop support services that keep and retain individuals in the con-
tinuum of care. The services provided through the Ryan White
CARE Act cover a broad range of services, and I will not outline
them for you; I have submitted this in writing to you.

Throughout the Ryan White CARE Act, programs have been em-
phasizing the development of these continuums of care, but have
been less effective in dealing with multiply diagnosed individuals—
individuals who bring to the health care delivery system not only
a diagnosis of HIV but a diagnosis of tuberculosis, sexually trans-
mitted diseases, serious mental illness, as well as homelessness
and other social issues that can impede the ability to deliver effec-
tive medical services.

The Ryan White CARE Act has also increased the provider base.
Hundreds to thousands of HIV infected individuals entering deliv-
ery systems throughout our country have precipitated an expansion
of the awareness of how to diagnose and treat this disease within
our health professional communities. The Federal, State and local


10

Our HIV case managers are culturally and linguistically diverse to
enable us to optimally serve minority communities. Language and
culture can be barriers to accessing services for members of minority
communities and priority must be given to accommodating this
diversity to assure quality service.

Services must also be available and provided in areas that reach
women and minority communities. In Stamford the HIV primary
care clinic funded by Ryan White is located at the Stamford
Community Health Center. This health center is located in a
building with many other anti poverty community services which
routinely serve women as well as many minority community
residents . The familiarity and convenience of this location for many
of the communities at risk for HIV has helped to enhance our ability
to link primary medical HIV care with those individuals in need of
this service. In addition due to Ryan White funding those uninsured
or underinsured have hot been restricted in any way from receiving
vital HIV care. To serve women and racial minorities it is crucial
that lack of health insurance not provide a barrier to care. Many
persons with HIV infection work full or part time with poor if any
health care insurance and are often not eligible for Medicaid or
Medicare.

Transportation to HIV services also becomes a critical obstacle in
serving HIV impacted communities where financial resources are
often extremely limited. To address this issue the Stamford Program
has been able to arrange an account with a taxi program, purchase
bus tokens and acquire car seats in all HIV case managers cars.
When transportir.g women with HIV infection to services one must
always take into account that young children might also be present
requiring safe transport in car seats.

The dramatic increase in HIV infection in women has and will
continue to significantly impact on the rates of pediatric AIDS due to
perinatal transmission. Ryan White funds are used in Stamford to
support our first Pediatric AIDS Care Program located at Stamford
Hospital. HIV infected children in Stamford can now receive their
specialty care near their home without having to travel to New York
City or Yale Hospital in New Haven. For families the burden of


63

This project has the potential to serve as a national model for the
development of HIV-specific managed care programs due to the large
pool of managed care enrollees and the variety of service delivery
sites involved. It will provide answers to the most critical
questions associated with HIV managed care, including how
capitated reimbursement can support the current standard of
comprehensive HIV care and the feasibility of developing a
comprehensive and effective quality monitoring and improvement

system.

This information is particularly important during New York's
transition to statewide Medicaid managed care. New York plans to
develop managed care Special Needs Plans (SNPs) specifically
designed for persons with HIV disease. These plans will maximize
integration of the existing, well-developed and coordinated
networks of comprehensive HIV care, ensuring access to quality care
provided by experts in the delivery of HIV medical and supportive
care. Existing HIV care networks will evolve into formal legal
entities that will be licensed as Managed Care Special Needs Plans.
The SNPs will include medical and supportive services including
ease management, outreach, and day care provided by medical and
community-based organizations. We will expect SNPs to conform to
established clinical quality of care guidelines and all SNPs will

be monitored.

The maintenance of existing grant-funded programs and a smooth

transition to Medicaid managed care are essential to the delivery


20

Mr. Chairman and Members of the Subcommittee:

I appreciate the opportunity to be here today to discuss our report
on access to federally funded services by women, minorities, and
substance abusers with the acquired immuno-deficiency syndrome
(AIDS). The AIDS epidemic is in its second decade and, continues
to escalate at an alarming rate. AIDS is the leading cause of
death for men between 25 and 44 years old and the fourth leading
cause of death for women in that age group. Recently the African-
American and Hispanic communities have been particularly hard hit.
And AIDS is affecting more women and injection drug users.

In the early 1980s, communities began to address the need to
provide services to populations infected with the human immuno-
deficiency virus (HIV). Many community-based and AIDS service
organizations were established to assist primarily gay, white men.
In 1990, the Ryan White CARE Act (P.L. 101-381) was enacted to
improve the quality and availability of medical and support
services for individuals and families with HIV. But with changes
in the makeup of the HIV-infected population and the increased
availability of medical and social services through the CARE Act,
concerns have been raised about whether the service delivery system
has been able to accommodate the needs of increasing numbers of
minorities and women infected with HIV. Therefore, we were asked
last year to assess whether CARE Act funding was reaching these
groups.

Today I would like to focus my comments on (1) who is getting
services and (2) the barriers to care. My comments are based on
our January 1995 report.’ Because national data do not exist on
populations served, we supplemented cur information by visiting
five areas-~Baltimore; Denver; Los Angeles; Sacramento, California;
and the Maryland suburbs of Washington, D.C.

In brief, we found that minorities, women, and injection drug users
generally use services at a rate that reflect their representation
in the HIv-infected population in the five areas we visited.
Service providers and advocates of HIV-infected people in these
communities agreed with this assessment of the patient population
receiving Ryan White CARE Act-funded services. Nonetheless, these
HIV-infected groups may have to rely on Ryan White CARE Act-funded
services more so than other subpopulations. Therefore, there may
still be unmet needs for care. Providers and advocates described
barriers to care that are particularly difficult to overcome, such
as homelessness, substance abuse, and language and cultural
differences. Providers mentioned the importance of outreach to
help overcome these barriers.

Substance Abusers (GAO-HEHS-95-49, Jan. 13, 1995).
1


37

Throughout the Ryan White CARE Act programs there has been an emphasis on
developing a continuum of care to provide alternatives to costly inpatient care. Studies
have shown that provision of adequate primary ‘health care significantly delays or
prevents the onset of disabling opportunistic infections, and as a result reduces
unnecessary hospitalizations. Individuals with HIV enrolled in primary care are less
likely to use emergency rooms or be hospitalized for Pneumocystis carinii pneumonia
(PCP), tuberculosis (TB), and other bacterial infections. This produces cost savings in
both the public and private sectors. One case of prolonged hospitalization for multiple-
drug resistant TB can cost more than $100,000; for each case in which PCP
hospitalization is prevented, $14,000 is saved.

‘A key component of the continuum of care has been the development of case managers
who facilitate timely access to needed services, reduce emergency room and acute care
hospital use, maximize efficient use of all available benefits, and promote coordination of
health and social services creating a "system of care" for individuals. Under Title I, the
services most frequently funded to achieve this continuum include primary medical care,
case management, mental health treatment, substance abuse treatment, and housing. AS
an example, Baltimore, Maryland increased the number of agencies providing ambulatory
medical and support services from 51 to 85 between 1991 and 1993, Within Title H, in
addition to pharmaceuticals and insurance continuation programs, services funded most
frequently are primary medical care, home health care, case management, mental health
services, and dental care. Under Title IlI(b), critical services added or expanded include
increased access to early intervention primary care services, outreach, HIV pre- and post-
test counseling, TB testing, and support services such as food assistance and linkages to
housing. Title IV grantees have supported increased outreach, counseling and testing
activities, and provision of AZT to mothers and infants to reduce transmission of HIV.
Throughout each Ryan White CARE Act Title, it is clear that Federal resources are to
be used as a fast resort when services are not reimbursable through other Federal, State
or local programs.

‘The Special Projects of National Significance (SPNS) grant program has provided a
unique opportunity to develop innovative models of care for specific populations.
Several of the projecis have been funded in low incidence areas, where traditional
models of service delivery are unavailable or do not work. Groups such as rural
populations, American Indians/Alaska Natives, adolescents, and women and children
present special challenges in the delivery and range of services needed. To date seventy-
four projects have been funded. Many new challenges lie ahead such as examining the
effects of managed care on HIV service delivery systems.


57

that lack insurance. And then to assist us in targeting title II funds
to epulations with special needs, we have established a statewide
AIDS service delivery consortium made up of care providers, per-
sons with HIV, and other individuals qualified to offer guidance on
our efforts to serve these populations.

With over $12 million of State funding we created a program
called the Multiple Service Agency Initiative which really looks to
establish comprehensive HIV care programs run by organizations
that are native to those communities, and we specifically selected
minority communities throughout the State. These comprehensive
one-stop shopping programs are established so that nei, hborhoods,
communities, can take ownership of this issue and of the problem,
and we have also established community development programs
that look to provide African-American, Latino, Asian and Pacific Is-
lander and Native American communities with the means to iden-
tify the needs and expand service delivery. This is with State dol-
jars.

In addition to these grant-funded programs, the Institute has uti-
lized an HIV-specific Medicaid reimbursement rate, clinical train-
ing, and a unique quality improvement program to New York, to
insure that health care services are widely available and of the
highest quality, and that they are standardized.

‘he Medicaid system, as you know, in New York is under transi-
tion to managed care on a statewide basis. For emerging popu-
lations in the AIDS epidemic and for those where the epidemic is
well-established, this transition is particularly important as the
great majority of them rely on Medicaid for their health services.

Before the State began to shift to managed care, New York DOH
recognized the need to enhance the understanding of managed care
systems and the implications of this transition for services to peo-
ple with HIV, and with this in mind we secured a SPNS grant
under the Ryan White CARE Act to look at cost, quality, and ac-
cess data on patients with HIV, under a managed care system, as
well as fee for service. This information will be used to establish
actuarial rates, monitor the quality of access to care under man-
aged care, evaluate utilization thresholds, and monitor changes in
delivery systems that result in the shift to managed care.

This project has the potential to serve as a national model to de-
velop HIV specific services within a managed care setting.

Mr. Suays. Can I ask you to summarize?

Dr. GuTmRREz. OK, this is very difficult, but let me tell you——

Mr. Suays. I understand it is, I apologize.

Dr. GUTIERREZ. I understand.

Mr. Suays. We would just like an opportunity for questions as
well.

Dr. GUTIERREZ. I guess I would say this: that we are working
very hard under the New York State waiver. There is a specific
charge to the AIDS Institute to develop something called a special
needs plan for people with HIV infection and the purpose is to do
a couple of things, to ensure that the current HIV care providers,
both medical and community-based, remain an integral part of that
service delivery system, that we insure quality by applying our
quality of care program to those managed care programs, as well
as to the special needs plans for people with HIV, to insure that


0 Pereent
”
“
n rs
.
. «
«
» 2 P
=
”
Let
.
‘Whee ‘Aten Mipesioe Wenn Injection rg
inate veere
Poputation Group
Esdeated HIV Pepto
‘Recaning Primary Care Sartoee,

Notes: Of the $4.6 million title I and II funds awarded in 1994,
primary care services providers received 40.6 percent of the funds.

The Baltimore EMA estimates its HIV-infected population at 16,500
persons.

During the 3-month period, 839 primary care visits were conducted.

Advocates and providers we talked to affirmed that affected groups
generally accessed services in proportion to their representation
in the HIV-infected populatior We obtained views on access from
advocates and providers representing and serving various
populations, including minorities, women, and injection drug users.

Use rates of CARE Act-funded services, however, may not fully
explain access to or the need for services. Although minorities,
women, and substance abusers appear to receive services in
proportion to their representation in the population, these HIV-
infected groups may have to rely on Ryan White CARE Act-funded
services more so than other subpopulations. Minorities generally
have lower incomes than whites and are much more likely to be

4


Page 4

“high risk" status when a patient presents in her last
trimester of pregnancy. There is an urgent need fo
expanded culturally sensitive AIDS education,

In Centrsl Brooklyn there is a great need for more Primary
Care providers as well as outreach workers. The burr oat
factor, coupled with low pay and demanding werking
conditions impacts on the ability to recruit and retain
qualified staff.

I frequently have to cancel AIDS case conferences for the
staff and other scheduled continuing educational activities
because of the need to provide medical care.

The approaches that we've used for the past decade to
decrease the spread of AIDS haven't worked. I implore us to
explore new ways to deal with the spread of AIDS. Public
education should begin in the school, should be in churches,
supermarkets, bars, theaters, video parlors, in short, any
place where people tend to congregate, because public health
education and prevention efforts are the only effective
means of reducing HIV infections.

Funding is needed to oxpand existing services and to add now
ones.

Counseling and support for women around the issue of
self-esteem.

Intervention through therapy and counseling when
adolescents engage in high risk behavior, before
they become HIv positive.

* Using the media (especially TV) in new and expanded
ways.

* Decriminalizing drug use.

x Looking at techniques that have worked to reduce
other STO’s and use them, o.g., partner
notification, tracking contacts.

x Make HIV education, prevention strategies and

treatment mainstream.


90

We were asked to provide you with a snapshot of the need for dental and pediatric AIDS
services in our community. While these areas are in dire need of coritinued and increased
funding, there are many other services needed by those who are HIV infected or at-risk for
infection. I hope that you will go away from today’s hearing with a better understanding of
just how great the need is and work to carve out AIDS services from other programs to
ensure continued funding and program growth in the future. It is essential that the AIDS
dental care program is reauthorized under the Ryan White Care Act, as is provided in HR
1872. AIDS is a devastating disease that cuts down those who often have the most living
yet to do, children and men and women in the their 20s and 30s. We at The Brooklyn
Hospital Center appreciate this opportunity to share our experience with the community and

welcome any questions you may have. Thank you.


44

manner, and that scarce resources are used more efficiently and are not duplicated in
providing services to people living with HIV disease.

Finally, the Department also recommends changing the formalized date a metropolitan
area may become eligible for Title I assistance. Under current law, a metropolitan area
qualifies for Title I assistance if it has more than 2,000 cumulative cases of AIDS or a
.0025 per capita incideace of cumulative cases reported to the CDC

This provision makes it very difficult for the Department to
accurately project how many cities may qualify for Title I funds in the coming fiscal year
when preparing the President’s budget.

The Department recommends moving this qualifying date up by three months to
December 31st of the preceding year. In other words, FY 1996 eligibility would be
based on CDC AIDS surveillance data reported on December 31, 1994. This would
allow the Department to more precisely project the number of new metropolitan areas
that will qualify for Title I assistance in the fiscal year.

The Department also recommends increasing the minimum formula award to States
under Title 11 from $100,000 to $250,000. The requested $250,000 minimum allotment
would provide the support necessary for States with low numbers of reported AIDS cases
to develop a better coordinated and more effective statewide program of services for
individuals with HIV disease, and carry out the Statewide assessment of need described
above.

An example is the State of Missouri, Ryan White CARE Act Title Il funds have
enabled the State through its consortia to develop a network of 116 primary care
physicians to provide care to patients living in rural areas. It includes family
practitioners, internists, infectious disease specialists, ophthalmologists, psychiatrists and
oncologist. In first year, 92 patients were served while in the first six months of 1994,
over 110 received care. This effort was coordinated by the State health officer who also
coordinates sexually transmitted diseases, and tuberculosis. With an increase in the
minimum award the State would be able to dedicate a larger portion of the officers time
to HIV service development.

‘The Department also recommends a single application and single award for Title I to
streamline the formula and application process. By combining applications for the
formula and supplemental awards, grantees would be able to redirect time and effort
now spent on the application process to improving the delivery of services to individuals
with HIV disease quickly and efficiently.

The Department also seeks giving the Secretary the authority to use unexpended and
uncancelled formula funds for Titles 1 and Il after the end of a fiscal year to offset a
future grant award to the grantee. This responds to the urgent need to make funds
available to the areas of greatest need where they can be quickly utilized for the delivery

13


85

AIDS patients suffer from some of the most debilitating and painful oral diseases, diseases
that require ongoing care and regular visits to the dentist. As a result of the immune system
breakdown, AIDS patients are more susceptible to oral herpes and rampant fungal diseases,
as well as oral disease found only in patients who suffer from AIDS, including an extremely
painful form of gum disease that frequently involves exposure of the bone. Patients who are
immunocompromised frequently complain of painful, aggravating mouth sores. Imagine a
mouth full of canker sores that will not go away - as soon as one heals, another appears; the

pain is incessant, making it extremely difficult to eat or speak.

The frequency of care required by patients with severe oral disease means that dental
services must be easily accessible for AIDS patients. Currently, funding for outreach and
direct care services is limited. Only one site in all of New York City, at Woodhull Hospital in
Brooklyn, has received federal funding to provide outreach and improve the accessibility of
dental care for AIDS patients. More such funding is desperately needed to minimize the pain
and suffering experienced by these patients. For children with AIDS, the need is even more
pronounced. As you know, many of these children are orphans who rely on extended family
members for care. Many of these caregivers are responsible for more than one child with
AIDS. Thus, taking a weekly trip across the borough to wait all day in a clinic to receive
dental care is not feasible or practical. If funding were available, hospitals like The Brooklyn
Hospital Center could better respond to this demand. For example, we could staff dental
offices in medical vans that could go into different neighborhoods on designated days during
the week to provide care following an appointment system. Unfortunately, the present
reimbursement arrangement does not make an allowance for extra costs such as this that

would substantially improve the everyday life of children and adults infected with HIV.


62

training, and quality improvement activities to ensure that health
care serviees are widely available and of the highest quality.
These efforts are particularly important in addressing the

HIV-related needs of persons in emerging populations, many of whom
reside in areas characterized by a shortage of appropriate primary
health care services, let alone the kind of sophisticated care

persons with AIDS require.

As you know, the Medicaid system in New York has begun a transition
to managed care on a statewide basis. For emerging populations in
the AIDS epidemic--minorities, women, and intravenous drug users--
this transition is particularly important as the great majority of

them rely on Medicaid for their health care services.

Before the State began the shift to managed care, the New York
State Department of Health recognized the need to enhance its
understanding of managed care systems and the implications of this
transition for services to persons with AIDS. With this in mind,
the AIDS Institute secured a special Projects of National
Significance (SPNS) grant under the Ryan White CARE Act to provide
us with cost, quality, and access data on patients with HIV in both
managed care and fee-for-service systems. This information will be
used to help establish actuarial rates, monitor the quality of and
access to care under managed care, evaluate utilization thresholds,
and monitor changes in service delivery systems that result from
the shift to managed care.


86

We can look forward to a future where prompt, high-quality dental services are available
conveniently and at a low-cost for all people with AIDS. But the current reality is far, far
away from that future ideal. Except for extreme trauma such as a broken jaw, dental services
are not currently reimbursed under Medicare and Medicaid coverage of dental services for
adults is optional, not required of the states, In meny states, only emergency dental care is
covered. This lack of sufficient reimbursement is particularly profound for those dental clinics
providing care for a significant number of AIDS patients. Dental clinics that become known
as referral centers for AIDS patients risk serious fiscal problems, because the patients they
serve have complicated treatment needs, requiring more resources than other dental patients
At The Brooklyn Hospital Center, we are able to make up in part for the difference between
the costs and reimbursement of caring for children and adults with AIDS through a
combination of federa! and state grants, private funding and the goodwill of our staff dentists
and oral and maxillofacial surgeons. But each year, it becomes more difficult to continue to
provide the same level of care. Each year, the number of HIV infected individuals increases
in our service area. Each year, opportunities for government and private grants shrink. And
each year the number of patients referred to us by institutions that are not equipped to deal
with the complexity of oral disease in AIDS patients increases. That is why the federal
AIDS dental care reimbursement program is critical. It partially offsets unreimbursed care
institutions such as The Brooklyn Hospital Center provide to HIV patients. Through this
program, more than 26,000 patients in New York were treated in 1993 and 1994. In the first
four years of the program, 36 New York institutions have received a combined $6.5 million as

a result of this program.


121

Lambda independent Democrats Page 7
almost a quarter believed that a cure for AIDS is available but being withheld.
Responses of men not affiliated with an organization consistently reflected less

knowledge and riskier attitudes, beliefs and behaviors."

Lambda implores government bodies to find more financial resources for the
development of community-based infrastructure to address the HIV/AIDS prevention
and care needs of Gay men of Color. The Center for Disease Control reports shocking
rates of increase in HIV infection among Black and Latino men. We know that much
of the new infection is attributable to unsafe sex between men, whether these men
identify as gay or not. With no preventive vaccination in sight, effective (and | might
add courageous) prevention programs are the only way to stem the tide of new
infections. Courageous because our prevention programs must begin to reflect reality
— the reality is that people engage in a range of sexual activity and must be armed
with information on how to engage safely. Such courageous programming would
involve using schools to reach young people and to speak openly and honestly about
sexuality. Nationally, Gay and Bisexual men comprised 82% of teenage AIDS cases
(ages 13 to 19). in the 20 to 24 age group, Gay and Bisexual men make up 60% of
the total number and with an incubation of usually about ten years we know that many
of these individual were infected as teenagers. Life saving prevention services must
be developed to reach these young men. To reach men who have sex with men (men
who quite often choose not to identify as Gay or Bisexual), we must begin the task of

getting all communities to be sensitive to the needs of this group. Many MSMs are not


124

Mr. Suays. Thank you very much.

Senator, you need to move the mike to you, even though it does
not pick up—do not even think that it projects your voice because
it will not. I am told by Mr. Towns, that he has a driver, that if
we are in the car at 1:30, in the car, we can make the 2 o'clock.
We are going to try that at 20 after, so you could spend your 5 min-
utes—we could have a good dialog, and if we go to 25 afer, we will
run,

Ms. MONTGOMERY. Congressmen Shays and Towns, I thank you
for being so gracious to allow me to join this panel.

Mr. Suays. It is a privilege to have you.

Ms. MontcoMEryY. Thank you. And I certainly understand how
it is that Mrs. McKinney got 7 minutes and I have two. I under-
stand giving due deference to your constituents, so Congressman
Towns and [—

Mr. Suays. Not just any constituent, the constituent.

Ms. MonTGoMERY. The constituent. I certainly agree with that.

Let me say I am here specifically to talk about the whole issue
of prevention as I see it and I understand that Congressman Towns
has talked about where we will be with HIV/AIDS in the year
2000. So I want to speak to the issue of adolescent health care be-
cause it is my understanding from the experts in the field that an
area where there is such an extreme explosion in new cases is
among teens and young adults who probably contracted the disease
as teens.

And while I certainly advocate abstinence, as I think we all do,
we recognize that the fact of the matter is that teens do engage in
what many of us would consider irresponsible behavior on many
levels, one of them being premature sex, and therefore, the whole
issue of prevention must be dealt with with adolescents in a very
specific way.

The State of New York now has received a grant from the Robert
Wood Johnson Foundation, which is a national foundation lookin;
at ways of providing health services specifically to adolescents ant
children. And the purpose of this grant is to help the State develop
a plan for funding school-based health clinics, comprehensive
school-based health clinics, in a way that makes them permanent,
a permanent part of our health delivery system.

The State of New York has been able to expand to some extent
the school-based health services in the State, especially in New
York City; but I must say that the initial thrust of that was
through the Robert Wood Johnson Foundation initiative that they
took some 5 years in the past where they funded school-based
health centers in particular. What is needed and what is com-
prehensive as I see it.

In addition to the regular health care services, we need to have
a firm system of sex and health education. That is the part that
is very difficult vis-a-vis what was stated by Mr. Cylar I believe.
The problem of talking about it, discussing it, and being com-
fortable dealing with that issue, especially with teens and pre-
teens. And the question of family planning counseling, being part
of a comprehensive adolescent health is crucial.

Those must remain as components of school-based health serv-
ices, in addition to AIDS prevention services, including the dis-


31

WRITTEN TESTIMONY
AIDS IN THE ‘90'S; SERVICES DELIVERY TO EMERGING POPULATIONS
BEFORE
THE HOUSE SUBCOMMITTEE
ON HUMAN RESOURCES AND INTERGOVERNMENTAL RELATIONS
OF THE COMMITTEE ON GOVERNMENT REFORM AND OVERSIGHT

July 17, 1995

Submitted by Eric P. Goosby, M.D.
Director, Office of HIV/AIDS Policy
Office of the Assistant Secretary for Health
United States Public Health Service

Department of Health and Human Services


STATEMENT BY
GEORGE GROB
DEPUTY INSPECTOR GENERAL FOR EVALUATION
AND INSPECTIONS
OFFICE OF INSPECTOR GENERAL

DEPARTMENT OF HEALTH AND HUMAN SERVICES

BEFORE THE SUBCOMMITTEE ON HUMAN RESOURCES
AND INTERGOVERNMENTAL RELATIONS
OF THE HOUSE GOVERNMENT REFORM AND OVERSIGHT
COMMITTEE

THE RYAN WHITE COMPREHENSIVE AIDS EMERGENCY ACT

JULY 17 1995


139

Mrs. MCKINNEY. Well, I am going to put my two cents in. I do
not want to modify anything. In Connecticut alone we had 900 and
some odd—922 persons who were homeless with HIV/AIDS who

ualified for housing, and we could only house 128 or 129, I think
that is the number, in the State. So we had to turn away close to
800 individuals who qualified, who were on the street, who were
homeless, who qualified for one of the many housing programs in
the State of Connecticut. You cannot cutback on HOPWA, you can-
not cutback on Ryan White. I want an increase.

Mr. Suays. He was not suggesting a cutback.

Mrs. MCKINNEY. I thought he said to modify meaning cutback
on.

Mr. Towns. No, no, no. I did not mean——
Mrs. MCKINNEY. I am sorry.
Mr. SHays. So you would increase it?
k Mrs. MCKINNEY. Oh, my, increase—I have been asking for that
for years.
ir. SHAYS. For the record, for the record.

Mrs. MCKINNEY. Yes, I would definitely ask for an increase.

Mr. Towns. And let me agree with you, for the record.

Ms. SANborF. I just want to add something to what Lucie said
and this is going forward. There is a lot of discussion about block
grants and folding all of these programs into giant block grants left
to the discretion of States and localities. I think what Keith men-
tioned about stigma is a very, very real thing, and we have seen
in localities across the country, thankfully not New York as much,
where mayors of certain towns will say, I do not want housing for
people witt. HIV in my city or my town, take your HOPWA and
take your Ryan White and take it somewhere else. And unless
there is earmarking of these funds specifically for these issues and
these populations, it is not going to be spent on these folks.

You cannot just collapse everything in a block grant and expect
the political pressures on the mayors and the council people, et
cetera, in these towns to just be so compassionate, because it has
not happened and it has been the Federal carrot and stick that has
aliowed these developments to occur around the country. You
that away, you are not going to see it and you are not going to see
these people being served.

Mr. Towns. Well put. I am very concerned about block grants,
block grants. I think that coupled with the fact that there is a cut,
but at the same time in terms of the block grants, and I think that
the reason we are not hearing a lot of outcry from the Governors
and from the mayors is because they just want to get their hands
on the money.

Ms. SanpvorF. That is right. And they will not have to spend it
on these populations.

Mr. Towns. Right.

Ms. SANDORF. ‘And that is the danger.

AUDIENCE VOICE. I would argue along with the Senator—

Mr. Towns. Wait please—was he sworn in?

Mr. Suays. Well, he is with the-——

AUDIENCE VOICE [continuing]. About the importance of HIV pre-
vention and I think a decade of senseless prohibitions and the
kinds of prevention programs that Federal dollars can support has


46

delivery systems put in place with Ryan White CARE Act funds over the last four years
not face catastrophic disruption. Diminishing the capacity of existing service delivery
systems which are providing essential caré is not in best imerest of an effective response
to the HIV epidemic.

The Department recommends that the legislation include a provision allowing the
Secretary to utilize supplemental funds from Title I to ensure that no EMA will receive
less formula funds in FY 1996 than they received in FY 1995. In subsequent years, the
Secretary would be given discretion to use supplemental funds to ensure that formula
awards for adversely impacted communities would renv.in >t no less than 90 percent of
their previous year award.

Conclusion

The Ryan White CARE Act works--a strong and heulthy partnership between the
Federal government, States and local communities. And the Ryan White CARE Act
must continue, as the HIV epidemic has not abuted. The epidemic is now expanding to
affect new areas of the country as well as continuing to batter the health delivery systems
of urban epicenters. From the public health perspective, until there is a cure for AIDS
our best defense is to offer and sustain people living with HIV in a coordinated system
of care.

The Ryan White CARE Act emphasizes the appropriate relationship between the
Federal, State, and local governments and links local autonomy with retention of
accountability. The HIV epidemic is a national public health priority, but strategies to
support the delivery of health and support services are best designed locally. The Ryan
White CARE Act is currently in the reauthorization process and we look forward to
working with members of Congress to strengthen it while retaining its capacity to be
responsive to the evolving nature of this epidemic. I am pleased to respond to any
questions you may have.



6

This changes very much the kind of response that is needed for
the disease. In the beginning, we might have talked about an em-
phasis of not sharing needles, of having safe sex, of securing the
safety of the blood supply. Now we find ourselves with a need to
say how you can take care of children who will be orphaned. We
now need adoption services and foster care services. We find people
who because of their immigrant status may not speak English very
well, and so now suddenly we need to have translators, and so on.
On the chart next to it I have written down the constant needs of
care that this network needs to provide and then some of the new
ones that result from the changing profile of this population.

Now this is not cut and dry, it is not as if we started here and
we ended up there. This is a continuous change that is occurring.
It would be very important under this kind of situation for that
network of care to have to respond to these changes. Now to some
extent the Ryan White Act was very successful because it built in
a self-adjustment. to the network. The people who are infected and
people who have the disease are on the planning councils and they
are in the consortia, and the people who provide the services and
see it coming are also on the groups that help plan the services.
So to some extent the network is self adjusting and it seems to be
working in some cases.

I could give a few examples; I will just give one from New York.
In a 14-month period the people serving the New York area pro-
vided services to people from 30 different nationalities, and they
found 11,000 children who were orphaned by AIDS and provided
adoption and other child welfare services for that kind of group. So
we see that this is happening.

But the network cannot adjust itself all by itself. It does need a
little help. The primary thing that the people that we interviewed
said to us was they wished that there was a greater exchange of
information, they wished that if they knew what worked, they
could tell somebody else about it; but if there was something some-
body else was doing, they would sure like to hear about it. So one
of the recommendations we made to the Public Health Service was
to provide for a more systematic exchange of ideas among people
who are in this network of care.

Another thing is that when the program was first started, the
primary goal was to establish this network, to get the funds out
there, to make things operational. Now this program has matured
somewhat. It has been around 5 or 6 years. Now we have to pay
attention to the more mundane things. We have to make sure that
we systematically gather information, that we methodically evalu-
ate what is happening, that in fact the programs that are out there
comply with the various provisions of the act. In other words, we
have to deal with it now as a maturing program.

In summary then, we feel we have got to make sure that the net-
work of care really works. We need to get the biggest bank for the
buck, we need to rapidly disseminate good ideas, and we need to
make sure that the response network is accessible to everybody
who is infected or who has the disease.

Thank you very much.

[The prepared statement of Mr. Grob follows:]


40

New York: A study of New York State Medicaid recipients found that patients who took
AZT were hospitalized fewer days per month and had reduced Medicaid expenditures.
Receipt of AZT therapy, in turn, was related to having a primary care provider or
specialist care. In another study it was found that the average length of hospital stay in
New York State for HIV/AIDS patients declined from 19.8 to 16.1 days from 1990 to
1993. Further, clients who had access to Ryan White CARE Act funded outpatient
services also had better survival rates than those who did not; 88 percent of HIV/AIDS
patients (all stages) survived two years with Ryan White CARE Act services versus 55
percent for those without.

New Jersey: In 1993, the pediatric AIDS Clinic at Children’s Hospital of New Jersey
supported under Title IV reported that outpatient care had decreased hospital admission
by 33 percent, and decreased mean duration of hospitatization by almost 50 percent
compared to data collected 2-3 years earlier.

In addition, evidence from four States--Florida, Hawaii, Minnesota and Wisconsin--
suggests that Title II health insurance continuation programs (HICP) have resulted in
significant cost savings. When these States compared the estimated costs of care for all
HICP-eligible clients with the total costs of their health insurance continuation programs,
they found savings of $1.3 million over one year, or $9384 per HICP client each year.
‘The larger the percentage of clients with late stage HIV disease who would otherwise
receive publicly funded care, the greater the cost advantages. Title Il funded health
insurance continuation programs also allow people with HIV to maintain employment
with reduced hours or part-time work without loss of insurance; the cost of their health
insurance premiums are at least partially ofiset by the taxes they pay. Under the HICP
provisions of Title Il, twenty States reported serving 2,828 clients, making premium
payments for 20,492 client months in 1993.

Delivery of Care in Rural Settings

‘The Ryan White CARE Act has played an essential role in increasing access to HIV-
related care and services in rural areas. In many States. Title I is the only source of
funding for these services, Rural or statewide consortia have been vital in linking people
with HIV with primary health care and case management services, as well as
pharmaceutical and health insurance programs. Forty one States have developed
consortia, which serve multi-county regions or an entire State. The following are
examples of improved access to care among rural residents:

New Mexico: New Mexico has improved rural services through a Statewide case
management system, implemented through home health agencies, and addition of a mail
service delivery option in the State's drug assistance program, which ensures delivery of
medications within 2 days of a physician’s prescription, In the last 2 years, New Mexico
has experienced a four-fold increase in clients, and in 1994 served more than 700 clients.


120

Lambda Independent Democrats Page 6
White men decreased (20%, 16%, and 3%, respectively), and the rate for Black men

increased (49%, 48%, and 53% in New York, Los Angeles and San Francisco
respectively." Similarly, there has been marked growth in AIDS cases among Latino

men who have sex with men.

Men of Color who have sex with men are increasingly making up a larger portion of
People with AIDS throughout this borough, city, state and nation. As of January 1995,
there were 57,838 total AIDS cases among men in New York City. Of these, 20,973
(36%) were among Black men. Almost half of the male cases were attributable to men-
who-have-sex with men. In this category, there were 6,476 AIDS cases among Black
men that were attributable to sex between men. Despite these statistics, overall
funding patterns do not sufficiently address the need for HIV/AIDS services among
Black Gay Men. In a recent paper prepared by Gay Men of African Descent (GMAD),
a Black Gay organization based here in New York City, reference was made to a 1989
national survey of 1,000 Black men who have sex with men from large and medium-
sized urban areas, which included 14% who lived in New York City. Gay Men of
African Descent's paper stated, “Only 54% (of the 1,000 Black MSMs) reported always
or nearly always practicing safer sex and 43% said they were likely to not worry about
having unsafe sex once ina while. A majority said AIDS had impacted how they feel
about themselves, most worried, and some had become afraid to have sex; a third
rarely discussed AIDS with anyone, and only about half said they would be willing to

share their AIDS diagnosis with their families or believed they would be supportive;


19

United States General Accounting Office,

GAO

Testimony

Before the Committee on Government Reform and Oversight,
Subcommittee on Human Resources and Intergovernmental
Relations, House of Representatives

For Release on Delivery
Expected at {1:00 am.
Monday, July 17, 1995

RYAN WHITE CARE ACT

Access to Services by
Minorities, Women, and
Substance Abusers

Statement of Mark V. Nadel, Associate Director
National and Public Health Issues
Health, Education, and Human Services Division

BAD

Sing

Gini
axe

Rig

GAO/T-HEHS-95-212


14

Clearly, much has been done, but much more remains io be done to serve all
people affected by HIV/AIDS, With limited resources available, we must
ensure that we are effectively targeting the use of Federal dollars. As we
point out in our repert, effective monitoring and evaluation can assist us in

properly allocating and accounting for Ryan White funds.

Thank you for the opportunity to speak today. I will be glad to take any

questions you may have for me

Attachments:
Office of Inspector General reports
"The Ryan White Act: Local Implementation Issues" (OEI-05-93-00336)

"The Ryan White Act: Examples of Local Coordination" (OEI-05-93-00335)

House Government Retorm and Oversight Committee Page 7
‘Subcommittes on Human Resources and Intergovernmental Relations July 17, 1995


3

found for this disease. Unfortunately, the latest research data indi-
cates that a cure for HIV infection is not expected any time soon.
Yet questions remain about the kind of research that is currently
available. The National Institute of Health has been reluctant to
do research on HIV infections in women and children. While AZT
offers some hope for infants, many pharmaceutical companies have
halted their research into AIDS drugs. While a cure for this disease
is not on the horizon, we have yet to develop an effective means
of halting the rapid infection rate in these new ulation groups.

Given the efforts in Congress to reduce the ederal deficit and
balance the budget, one issue that must be addressed is whether
adequate funding resources will be available. We will also need to
explore whether new preventions, methods, are needed to halt the
spread of this disease. For example, if intravenous drug use is a
major factor in the HIV infection rate among women, should not
we seriously consider needle exchange programs? I think that is
something that we need to talk about and to come up with a deci-
sion real, real soon.

Mr. Chairman, I look forward to hearing the testimony of today’s
witnesses, as we seek to make governmental policy responsive to
the new groups affected by the AIDS crisis in the 1990's.

And again, I would like to thank you for holding this hearing and
again your leadership in this issue.

Mr. Suays. I thank the gentleman.

The mikes here are not going to pick up our sound. These are
for transcribing. I am going to ask the witnesses to talk very loudly
to us so that. People in the audience can hear. Can you hear in the
back at this level? OK. So you cannot speak loudly enough in this
room.

At this time I would like the witnesses to stand up and then I
will identify them afterwards. It is the practice of this committee
in every hearing to swear in our witnesses. Mr. Moran, if you are
in fact going to say something you need to be sworn in.

Do you solemnly swear that the testimony you will give before
the subcommittee will be the truth, the whole truth, and nothing
but the truth?

[Witnesses sworn.]

For the record, I note that all our witnesses have answered in
the affirmative.

I am going to ask at this time unanimous consent that all mem-
bers—it will basically be the two of us, but any other member of
the subcommittee be permitted to place any opening statement in
the record and that the record remain open for 3 days for that pur-
pose. Without objection, so ordered.

I also ask unanimous consent that our witnesses be permitted to
include their written statements in the record and any other infor-
mation you would like to submit. Without objection, so ordered.

At this time I will identify our witnesses and we will go in this
order: we have Mr. George Grob, Deputy Inspector General for
Evaluation and Inspections, Department of Health and Human
Services based in Washington. We appreciate you coming up here.
We have Mr. Mark Nadel, Associate Director of Health Policy, U.S.
General Accounting Office, also in Washington as well. Dr. Eric
Goosby, Director of the Office of HIV and AIDS, Office of the As-


182

drug addiction and destructive behaviors, and to promote a sense of well being, healing,
and wholeness. The process begins with the people themselves. Organizationally,
STANDUP is conscious of how disabling it is for persons living with AIDS and substance
abusers to become dependent upon institutions. Consequently, people who come to
STANDUP Harlem are never referred to as “clients,” but rather as participants, guests or
members. Many of STANDUP’s staff members live in residence with guests, reinforcing a
communal process which itself reflects the shared living and extended family values that
are the fabric of African-American and Latino cultures.

Louis Jones, founder and director of STANDUP, is typical of the organization’s
members. A heroin user for more than 15 years, Jones had been cycling in and out of
homelessness and jail and had become HIV-positive before he decided to “stand up” and
face his disease in 1990, His disclosure of the much feared and often denied disease
transformed him, and led him to devote his life to the task of creating a safe and accepting
community for others who were homeless, HIV-positive and destitute, His idea was to
reclaim a derelict crack house at 145 West 130th Street for use as a residence for
homeless men and women. As Jones recalls, “We just welcomed people with what we
had.” People coming off the street “got a meal and a shower. They were welcome. They
were home. It was OK. to cry. It was O.K. to be angry. And then we saw that people
weren’t ashamed anymore of their HIV. People started to recover emotionally.
Astounding things were happening.”

Today, STANDUP Harlem provides a web of supports for an extended community
of people of color facing the crisis of AIDS, alcohol and drug abuse and poverty, The
program at West 130th Street provides stabilization for HIV positive persons, and often
helps them to develop their own personal strategies for staying healthy, including
meditation, acupuncture, herbal therapies and other alternative treatments. It provides
peer support and counseling for substance abusers who are in recovery, and it provides
Low Threshold Services to active drug users as well as addicts seeking recovery,
providing alternatives to institutionalization. Some of its members have been able to come
to STANDUP Harlem upon release from prison, as alternatives to continued incarceration.

C. Scattered Site Housing

Yet another supportive housing model for people with AIDS is scattered site
housing. This type of housing is most appropriate for individuals who are capable of
living relatively independently and do not need intensive support. The New York City
Human Resources Administration’s scattered site housing program allows non-profits
throughout the city to rent apartments in private buildings and sublease them to people
with AIDS. The program is widely viewed as a success, both by advocates and city
officials. It has grown significantly, and currently allows 39 non-profits to contract with
the city to manage and lease apartments for about 1,600 individual families at a cost of
about $40 million in city, state and federal funds.


110

Connecticut

Acquired Inmunodeftctency Syndrome (AIDS)
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69

Testimony: "AIDS in the 90's - Service Delivery to
Emerging Populations"

Hearing: Subcommittee on Human Resources and
Intergovernmental Relations

Location: Brooklyn Borough Hall, New York
Date: Monday July 17, 1995
Testimony by: Debra Katz, MSW, CISW

AIDS Program Coordinator City of Stamford

President, Stamford CARES Inc.
(Coalition for AIDS Resources Education and Services)

In the State of Connecticut the devastating impact of the AIDS
epidemic on racial minorities and women has long been evident and
a response to begin to address this critical issue has already begun.
More specifically as AIDS Program Coordinator for the City of
Stamford, I can testify that our local statistics have for many years
been increasingly demonstrating the toll AIDS is having on Latino
and African American communities and women. Presently 68% of
AIDS cases in Stamford are minority. The rate of AIDS cases in
women in Stamford has increased by 130% in the past two years.

Stamford received its first Ryan White Title II allocation in
November 1993 and the first Ryan White Title I funding in April 1994.
Initiatives discussed in this testimony are primarily funded through
both Ryan White Title II and Title I funds. The Stamford Ryan White
Program is based on an HIV case management model. The client and
HIV case manager in partnership complete a needs assessment,
develop a plan and access resources as needed. Case management
clients for the Stamford Ryan White Program already reflect the
jmpact of HIV on both minority communities and women. 80% of the
clients are minority and 43% are women. The breakdown of
transmission risk of Stamford's Ryan White clients also dramatically
represents the changing nature of the AIDS epidemic; 9%
homosexual /bisexual, 40% intravenous drug user, 27% heterosexual
and 14% perinatal.


24

without health insurance. Therefore, minorities are more likely to
depend upon publicly funded services such as those funded by the
Ryan White CARE Act.

BARRIERS MAY LIMIT ACCESS

Providers and advocates told us about many barriers to access for
HIV-infected individuals that are particularly difficult to
overcome. HIV-infected people who are substance abusers and
homeless have difficulty in seeking services because of the
dysfunctional nature of their lives. For women, lack of child care
limits the ability to make and keep appointments for HIV-related
services. Another problem in seeking services is the lack of
transportation. One provider said that transportation subsidies,
usually for bus fare, are provided to clients. However, some
clients, such as women with small children or persons with
disabilities, need other forms of transportation.

In some instances, the lack of knowledge about and lack of
motivation to seek services affect the extent to which people use
services.." Providers said that some clients are seeking services
during the later stages of infection. HIV-infected people in some
cases do not seek services because of denial or ignorance of the
disease and a lack of trust of the medical community. Also

mentioned were cultural differences and language barriers that
limit access.

Several providers told us of individuals' reluctance to obtain care
from a provider of a certain racial or ethnic group or who
primarily serves a different racial or ethnic group than that of
the person seeking services. Some minorities and women are
reluctant to obtain assistance from an organization that serves a
predominately white male clientele or that is perceived as a gay
white male organization.

Providers, advocates, and HIV-infected persons whom we contacted
acknowledge the benefits that the Ryan White CARE Act has made in
providing needed services to minorities, women, and substance
abusers. However, to help in overcoming barriers to care, they
also recognize the need for local outreach services to make HIV-
infected people aware of prevention, the availability of services,
and the need to seek medical attention early on. Such outreach
sexvices can increase the likelihood that HIV-infected persons
receive needed services.

This concludes my prepared remarks. I would be pleased to respond
to any questions you might have.


Page 3

any effort to decrease the incidence of AIDS must include
aggressive measures to provide more and better drug
treatment services. as I write this statement, a couple
presented to our Center - the man an IVOU has been waiting
two (2) months to get inte a drug treatment program.

* There is the need to establish a network so that
neither a client nor social worker has to ca!l all
the programs in Brookiyn to make the appropriate
placement for the clients. (A clearing house)

* There are no needle sxchange programs in Bedford
Stuyvesant. Since 62% of the AIDS cases is related
to IYDU harm reduction around drug use is very
important. There are only 7 harm reduction/needle
exchange programs operating under approval from
NYSDOH. 15,000/0f an estimated 200,000 drug users
are enrolled.

There is inadequate arrangements to provide confidential
testing. As of June 1, 1994, the City no longer pays for
the uninsured to receive confidential testing. As of July
1, 1995, the City no longer does any testing except the
confirmatory test if the screening test is positive.

Although there are provisions for anonymous testing the
purpose of testing is lost if the client doesn't return for
the results.

Adolescents benefit from tailored repeated and personalized
messages. €ach time an adolescent enters the health care
System for any reason the health care provider must seize
the opportunity to make an assessment of the knowledge
level, risk behavior of the patient, and counsel
accordingly.

A Haitian woman 8 months pregnant, recently visited the
Center seeking prenatal care. She was undocumented and
uninsured. When asked why she hadn’t come in for care
sooner, she said she was afraid that she might have AIOS and
would be sent back to Haiti after allaying her fears
regarding possible deportation, a referral was made to the
high risk clinic at our back up hospital. This was done
because our treatment protocol requires the assignment of


10

Americans, women, the young, immigrants and the non-English speaking,
are more and more affected by HIV/AIDS. Recently, the Center for Disease
Control and Prevention reported that minorities represent more than half the

new AIDS cases in the U.S. Their report confirms what we heard.

Across the country, local government agencies, health care and social service
providers told us they must reach the emerging populations afflicted by
HIV/AIDS. These populations present special problems for these agencies
and providers for a number of reasons:

@ in minority, immigrant, and non-English speaking communities,
cultural mores often discourage those who might be infected with
HIV/AIDS from being tested or seeking treatment.

© women, often the primary caregivers themselves, may delay seeking
treatment as they tend to their family needs first and foremost.

© overwhelming poverty of many in the emerging populations compounds
the needs of those affected.

© in addition to living with HIV/AIDS, they may also suffer from

substance abuse or addiction, homelessness, mental illness, or other

nditions that require considerable care.

House Government Reform snd Oversight Committee Page 3
Subcommutice on Human Resources und intergovemmental Relations July 17, 1995


Testimony of Dr. Monica Sweeney, Medical Director of the
Bedford Stuyvesant Family Health Center which service the
residents of the Central Brooklyn/Bedford Stuyvesant
Community.

I am Monica Sweeney, Assistant Professor of Medicine end
Preventive Medicine at the SUNY Health Science Center at
Brookiyn. I am also Chairperson of the Fublic Health
Committee for the Medical Society County of Kings. As a
Primary Gare Physician, I appreciate the opportunity to
comment on the problem of HIV and AIOS.

Although the assembled professionals are aware of mast of
the statistics on the incidence and prevalence of HIV and
AIDS, I will just quote a few so that we all have a handy
reference of the magnitude of the endemic in its 2nd decade.

* Central Brooklyn's Bedford Stuyvesant/Crown Heights
neighborhood is one of the top three neighborhoods in
the nation devastated by AIDS. With almost 3,800
cases by mid-1993, this neighborhood of 214,000 adults
had a higher cumulative number of AIDS cases than the
states of Alabama (1,452), Colorado (2,245) and
Connecticut (2,500). Adult AIDS case rates in
Brooklyn have more than quadrupled in the past five
years and have tripled for children in the past four
years. The North and Central parts of Brooklyn have
been hardest hit with AINS. Greenpoint,
ODowuntown/Heights and East New York also display
exceedingly high rates of AIDS.

* By October 1993, almost 400 of Brooklyn’s children had
been diagnosed with the disease. This number is now
close to 500. Only one in five of those AIOS
infected were white, and more than seven out of ten
were Black or Hispanic. The overwhelming majority of
AIDS cases (62 percent were in some way related to Iv
drug use.

* $1.9% of adult AIDS cases in New York City are African
American.

* 86% of the women who have developed AIDS in New York
State are from New York City. 53% of women with AIOS


29

Let me just make certain that I understood you clearly, Doctor,
that you said that in 1994 that 56 percent of the new cases were
blacks and Hispanics?

Mr. Goospy. That is correct.

Mr. Towns. What special concern should we have about these
new population groups’ access to treatment? Can you share with us
some of the various treatment that these groups might face?

Mr. Goossy. Congressman, you bring up, I think, a very impor-
tant issue. Minority populations in this country historically have
not had access to medical services. That deals with any disease,
looking at any group in any geographic area. The reason for that
is multifactorial; but the bottom line of it is that our minority pop-
ulations have more difficulty entering care and being retained in
care. This is true for HIV infected minority populations as well. It
is also true that the epidemiology of the epidemic, focusing and be-
ginning with gay white men initially, had delivery systems that
were responsive to the needs of that population, and I might add
appropriately so.

As the expansion of the epidemic continued and as we began to
see greater movement into minority populations, women and chil-
dren, adolescents in particular, we attempted to identify this trend,
this expansion, and move the awareness of the planning bodies to-
ward responding to the specific needs of these populations. Ground-
ing the decision-process and the definition of the needs of the popu-
lation has been the key to linking resource allocation with service
expansion to serve different populations that were not originally
identified.

I think that this work is not done yet. And with continued vigi-
lance and continued support through technical assistance, as well
as the identification of effective models to increase access and de-
livery points of care with mechanisms and systems that support
the individual and keeping them in care, I believe that we will con-
tinue to have an impact on those numbers.

Mr. Towns. One last question, Mr. Chairman.

There has been a lot of discussion about needle exchange and of
course here in this city there has been an ongoing debate. Can I
get your views on that?

ir, SHAYS. The short version.

Mr. Goospy. The short version?

Mr. Suays. The bottom line.

Mr. Goossy. This is a very difficult issue. I believe you are cor-
rect once again to bring it up as something that needs to have on-
going discussion.

Currently we are constrained by a mandate from Senator Helms
that puts the impetus on the Assistant Secretary of Health to iden-
tify research that shows that the use of needles does not increase
di use within the needle exchange population, those using the
needle exchange program; and second, that it does not increase
dri paraphernalia present in the community in and around the
needle exchange program, and that it does indeed decrease the ac-
tual sharing of needles within the IV drug using population that
utilizes the program.

There have been a number of studies that have shown—that
have shed light—that is positive on this issue, and there have been


- 98

decision can only have a negative impact on women and Black and Latina
women in particular. If our real goal is to protect the new born infant,
then we should focus on developing meaningful services for women with
AIDS in general and pregnant women specifically . Perhaps this is to
simple for government to understand, but our experience at the grassroots
clearly indicates that if women are offer adequate prenatal care and
counselling regarding the potential risks of HIV, they will fully utilize the
resources available to enhance their own health and to prevent the
infection of their offspring. Tying service dollars to coercive measures
will only force the construction of one more barrier to service.

The Ryan White Care Act, the Housing Opportunities for People With
AIDS, along with federal appropriations to the Centers for Disease
Control, are major sources of funding for AIDS specific services. These
programs suffer from there individual programmatic flaws but also suffer
from a lack of coordination and integration . HOWPA funding can be
utilized to provide housing but can not be used to provide many of the
essential services required to stabilize and keep a person housed. Little
coordination has taken place to integrate HIV and TB services despite a
clear correlation of risk. Prevention funding is completely segregated
from service funding as if the target were two wholly different groups of
people. The need for prevention measures integrated with case
management services, housing programs, primary medical care, and
transitional shelter cannot be too greatly underscored.

| cannot conclude my remarks without very frankly addressing the
debate that is taking place right now in Washington D.C. with regard to the
allocation of Federal dollars and the requirements that are often imposed.
To be sure, many states and localities object to the imposition of
mandates. We too see them as a two edged sword. But for communities of
color, there is a reality that is all too often overlooked in the larger
discussion. Our experience has generally been that the federal government
has been far more sensitive to our needs than have, in many instances,
local and state governments. This is a major element of the stake as the
debate on the Ryan White Care reauthorization draws to a conclusion in
the next few weeks. That is why we have so aggressively attacked the
plan for a single appropriation between Titles | and II. A single
appropriation would eliminate the role of Congress in targeting funds
specific to the urban areas hardest hit by this epidemic . Given the
realties of the economic conditions in urban areas heavily impacted by


140

crippled the Nation’s response to HIV, and we certainly know that
prevention is the most cost-saving intervention that we have.

Mr. SHays. You will need to give your name to the gentleman
who is transcribing. You will be the first witness in the history of
my committee that has spoken and has not been sworn in.

ir. TOWNS. He was sworn in.

Mr. Suays. Oh, he was?

Mr. Towns. Yes, sir.

Ms. MONTGOMERY. We thank you for your leadership. This is ex-
tremely important, especially in New York State. Connecticut is a
leader, your State is a leader, and to have a Republican saying un-
equivocally that this is really one of the issues that we all must
pay attention to—

Mr. Suays, Thank you.

Ms, Montcomery [continuing]. Be sensitive to in planning for is
very important.

Mr. Towns. Let me ast say to you my views and my feelings
about this Member of Congress. I have said to him, being that we
are the minority now and I cannot be chair of the committee bein;
I cannot be, I cannot be, so therefore, I will accept the fact that
would select him to be it if I could. But the point of that being I
cannot be it. Because his views on it and his leadership has been
excellent on this particular issue.

Mr. Suays. I thank my colleague. I saw the ranking member and
pleaded that he be the ranking member himself. It is mutual.

Mrs. MCKINNEY. Can I just say-——

Mr. SHays. You want to get the end words?

Mrs. MCKINNEY [continuing]. Just 2 seconds?

Mr. SHays. Yes, ma’am.

Mrs. MCKINNEY. For the people in the room that did not see it,
I just want yee to know that Congressman Shays got up on the
floor of the House and submitted a bill on HOPWA and he knew
he was dead before he went in there because of what the higher-
ups were doing to him. But——

Mr. Suays. We are still working on it, Lucie.

Mrs. MCKINNEY [continuing]. He stuck to his guns, and thank
you very much.

Mr, Suays. Thank you very much. God bless.

(Whereupon, at 1:30 p.m., the subcommittee was adjourned.]

[Additional material submitted for the record follows:]


91

Mr. SHAYS. The question I am going to be asking the witnesses
that I do not want an answer to now, but I am struck by the fact
that we look at this emerging population and I am wondering if
this emerging population is less likely to know that they have
AIDS or are HIV positive. So I will be asking that question later.

Can we go to our next panelist? Thank you, sir.

Can you say your name again and I will try to—

Mr. Cyxar. My name is Keith Cylar.

Mr. Suays. Keith Cylar. OK, thank you.

Mr. Cyuar. Mr. Chair, Mr. Towns, and members of the sub-
gommittee. I am Keith Cylar, coexecutive director of Housing

orks.

Since opening our doors in 1991, Housing Works has provided
advocacy, permanent housing and a wide array of supportive serv-
ices to thousands of homeless men, women and children. Currently
Housing Works is providing supportive services to over 700 men,
women and children, and a host of supportive services——

Mr. SHays. Mr. Cylar, can I ask you to speak louder?

Mr. CYLar. Sure.

Mr. Suays. I think the problem is that we are all trying to read
a whole statement and the faster you read it the softer your voice
becomes.

Mr. Cyzar. OK, well then let me abandon reading my statement.

Mr. Suays. Believe me, I think it would be better for you.

Mr. Cyar. I wanted to do that anyway. I hate reading state-
ments.

Mr. SHayYs. The statement will go in the record, and what you
say that you live with daily, fire away.

ir. CYLAR. OK. I want to take a different tack. I think everybody
has outlined the problem of the emerging populations in great de-
tail. I think I want to talk about the barriers and some of the bar-
riers for the emerging populations are the same barriers that ex-
isted for the initial populations, and that first barrier has to do
with the stigma related to this disease. As a black gay man living
with this disease, I can personally tell you about the stigma of
AIDS and HIV, the stigma of homosexuality in this country. As
Jesse Helms so eloquently put forward about funding for this pro-
‘am and some misstatements about the amount of money being
‘unded, it is not a disproportionate amount of money being spent
on this disease.

Aside from that, I think one of the barriers that we have in this
country for providing services is the absolute lack of housing. You
cannot expect people who are inadequately housed, who are living
doubled-up, who are living on the streets or in the shelters in New
York City or throughout this country to be able to receive the kinds
of care and services that they need. We have an epidemic of mal-
nutrition in this country. So between malnutrition, homelessness,
AIDS, TB, and substance use, and the overall general stigma at-
tached to those diseases, those epidemics, where people are per-
ceived of as being less than, they are perceived of as being bad,
they are perceived of as being unworthy of treatment and dollars,
I think that is one of the largest barriers.

As a result of all of those things, people oftentimes receive inad-
equate care. They are marginalized out of the political system and


i

‘And these populations have additional needs in addition to those traditionally
associated with gay, white males. Asa result of the shift in the HIV/AIDS
population, medical and service providers have been forced to expand from
offering a basic range of services that usually included primacy medical care,
case management services, housing, substance abuse treatment, food banks,
and transportation to various services. They still provide these services, but

they must also develop and offer services geared to the emerging populations.

Other services especially needed by the emerging populations include:
locating services in new neighborhoods, providing culturally sensitive
services that target the emerging populations, using interpreters for non-
English speaking clients, dealing with HIV/AIDS clients with multiple
medical conditions, housing clients with other family members, providing day
care for children of HIV/AIDS clients, and offering support services for

children orphaned by AIDS.

We found examples of communities responding to each of the "increasing
needs" of the emerging populations. I just want to highlight three of these

responses among the many we found in our research.

House Government Reform and Oversight Committee Poze 4
Subcommittee on Human Resources and Intergovernmental Relations. July 17, 1995


91

free before they can receive services. Well, if you have no access to care
and no hope for the future, if your live remains filled with chaos and
misery, how can you ever find the courage to even aspire to a different
kind of life? The lack of nonjudgmental programs for people who are
chemically dependent is an absolute barrier to services. The most obvious
example of the way prejudice has interfered with both social science and
common sense is the continued opposition to and lack of funding for needle
exchange programs. But that isn't the end of it by any means. It's just one
step toward serving people who use intervenous drugs. We must also
recognize the impact of crack/cocaine use in the spread of HIV infection
and fund the development of harm reduction programs that serve that
population as well.

As a very proud Black gay man who is living with HIV, | must also
point out the barriers created by the prejudices surrounding men of color
who have sex with men. in the larger society, the stereotypes are clear.
The AIDS population is gay white men and minority drug addicts. As if
that were not bad enough, in our own communities, gay men of color are
completely invisible. Yet Black gay men comprise between 10% and 20%
of the men infected with HIV in New York City. Denial of our existence
guarantees that we will continue to go underserved. tn the face of social
stigma, many gay men of color will continue to remain closeted, at risk of
infection and at risk of infecting others.

Women Issues

Overwhelmingly, women infected with HIV are Black and Latina.
Predominantly, they are from urban areas. The lack of basic health care
services in communities where these women live only exacerbates the
difficulties women with AIDS and HIV face in obtaining services. In many
instances, low income urban woman are single parents with little of the
social infrastructure they need to keep their families intact and to take
care of themselves. Adding insult to injury, in the current political
debate, women with AIDS and HIV are discussed and considered more for
their reproductive capacity than for the value of their own lives. Thus the
hottest single topic related to women with AIDS is not how to treat their
HIV-specific needs, but the mandatory testing of pregnant women and of
new borns with HIV. Irrespective of the tentative results of clinical trial
176, only under the most superficial analysis can coercive testing be
described as in the best welfare of mother or child. In fact, this policy


102

Poverty, isolation and unequal access to health education and care
as well as the current epidemic of drug use in some segments of
these communities place many ethnic and minority individuals at
increased risk. Public health campaigns on HIV disease have been
slow to reach these communities and only recently have culturally
appropriate initiatives been instituted in earnest.

Too often our medical, legal, social service and educational sys-
tems assume that all families with HIV disease need similar types
of services and that all will make similar decisions regarding the
care of children left orphaned. But culture plays a large part in
how one views family, community, and the future. Unfortunatel;
our current institutional systems often lack the flexibility to permit.
decisionmaking on cultural and social values that differ from the
American norm,

I recently met a wonderful woman who lives in Bridgeport—two
wonderful women who live in Bridgeport, both of whom are wid-
ows, who because of the loss of their children to AIDS are now rais-
ing a second family, their grandchildren. I ask you, who is goin;
to help them if you cut back or eliminate Ryan White? They depen
on that help.

In closing, I would like to read xu a letter from a family who
now has a home, thanks to HOPWA and Ryan White. This is a let-
ter sent to Gary and I.

Dear Lucie and Gary. 1 think of you often so | am writing to let you know how
very grateful I am. All that 1 have and all that | am becoming was made possible
by your foundation, You have given me a safe place to raise my children and that
is so important to me. Ever since we have been in the house, I have grown so much.
T get to send my son off on the bus each morning and be there for him when he
gets home. I am enjoying watching my daughter play in a safe home, wonderin;
where we would be if it were not for you. T am enjoying cooking and cleaning an
washing my family’s clothes. T enjoy walking out to get my mail. 1 enjoy drinking
my coffee at night and reflecting on my day ‘almost past. I enjoy calling my son in
for the night, explaining to him that ry is almost over and that he needs to
get ready for bed. You may think this is trivial, but these are the things that make
me feel like a human being, a part of society. This home has given my family con-
sistency. My son, who is in the fourth grade, no longer asks Mom, where am I goi
to go to school next year? He now telke about going to Fairfield High School an
all the sports he wants to play there. These are the things that make my life so
fulfilled. Stop by anytime, You will see that your house is my home where I am rais-
ing my children, Te that I owe you eve God bless you and your people, and
all the hard work that you do. And you for our new life.

Thank you very much.

[The prepared statement of Mrs. McKinney follows:]



118

Lambda Independent Democrats Page 4

well-over 90% of these cases occurred in the Black and Latino communities, the Asian,
Pacific Islander and Native people have experienced an increase in caseloads in their
respective communities and, similar to the Black and Latino communities, are greatly
underserved. During 1994, there was a 24% increase in New York City adult AIDS
cases amongst People of Color. Women of Color make up almost 90% of all adult
female AIDS cases. From December 31, 1992 to March 31, 1995 there was a 106%
increase in the number of AIDS cases amongst women of Color. HIV/AIDS is not
simply emerging in communities of Color. The disease has emerged, and has caused
much pain and despair within communities of Color. Black and Latino people have
been especially ravaged by AIDS. More culturally competent and appropriate services
are needed to stem the tide of the epidemic amongst People of Color — services which
will even better address the diversity of communities of Color. Lambda also implores
you to preserve and protect live-saving social service programs such as Medicaid.
Medicare and public assistance, which are programs that many people living with AIDS

(especially those of color) rely on for support

Another “emerged” group which Lambda Independent Democrats believes must be
addressed is the extremely diverse group of Gay men of Color. This past week has
been quite a trying one for me. Although | took the week off from my job at the New
York AIDS Coalition, | didn't get much rest. My roommate, a Black Gay man, was/is
at home quite ill. With spiking fevers, erratic bowel movements, AIDS related dementia,

increasing lesions, and a host of other personal challenges, this has not been a good


65

coping with loss.

Finally, I'd like to briefly mention the importance of

re-authorizing the Ryan White CARE Act this year. The CARE Act
delivers nearly $140 million to New York for HIV-related health and
supportive services, and the loss of this funding would decimate
the HIV health care infrastructure in New York. As such, it is

imperative that Congress act quickly to reauthorize the CARE Act.

I appreciate the opportunity to present this testimony, and would

be glad to respond to any questions you may have.


1

traveling at least two hours round trip to get their HIV infected
children medical specialty care has now become unnecessary and the
local availability of this care has increased compliance with medical
appointments. In addition to medical care, the Stamford Ryan White
Program offers both HIV case management and mental health
services at the same location and at the same time as the Pediatric
Clinic. This one stop service enables family members specifically
mothers who are also infected to easily access other vital support
services along with their child's medical care. The Client Special
Needs Fund is a critical part of the Stamford Ryan White Program.
The strained financial resources of many of our clients often requires
the use of emergency funds to help pay for their medical care,
laboratory tests, medications, home health care, dental care, mental
health counseling and other vital services when no other available
resources can be found to fund this service.

The provision of home health care and respite care is vital to many
individuals who are HIV infected who have no extended family or
support system to help care for them. Without home health care,
clients ability to remain in their homes could often not even be
considered an option. For HIV infected women with children, the
provision of home health care may be the only way these mothers
can continue to remain with their children when they are sick.

A special fund-raiser was held in Stamford by a private day care
agency who helped to begin the first Child Care Scholarship in
Stamford for children with HIV infection or for children affected by
HIV because their caretaker is HIV infected. This scholarship fund is
small but will begin to fill a major service need. The cost,
exacerbated by limited space for child care, is further complicated for
families impacted by HIV. As the rate of HIV infection for woman
and children continues to increase child care arrangements often
become a necessity for many families. For the HIV infected mother
or father who may need to get to medical appointments or is too ill to
care for their child all day long, child care may assist them in being
able to continue to care for their children yet also attend to their own.
health needs . Child care may not even be an option if there is no
form of available subsidy of scholarship.


16

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99

HIV, it is unlikely that the financial commitment necessary to provide
services to communities of color will continue without a strong federal
mandate. On a much larger scale, we fear exactly the same impact as
congress considers block granting Medicaid and takes up so-called
“welfare reform.

I have raised only briefly many vital issues today. | can only hope
that you share our sense of urgency and our passion regarding these
matters. The reality is that for all too many of us, what is at stake is our

very lives. Thank you.


21

BACKGROUND: RYAN WHITE CARE ACT

The Ryan White CARE Act provides federal funds to state and local
areas for medical and support services for HIV-infected individuals
and their families. For fiscal year 1995, 42 eligible metropolitan
areas (EMA)? received $349.4 million under title I of the act; the
$4 states and territories received $174.8 million under title II of
the act.

Under title I of the act, EMAs are required to establish planning
councils that are made up of service providers and representatives
of affected communities, among others. The councils develop a plan
for service delivery and set priorities for allocating funds. The
councils also provide input on which service providers receive
funding. EMAs award CARE Act funds to providers of medical and
support services. These providers include hospital outpatient
clinics‘, community health centers, community-based organizations,
and hospices, among others.

States and territories use title II funds in one or more ways.
About one-half of title II funds are used to establish and operate
HIV care consortia in areas most affected by HIV. These consortia-
~consisting of public and nonprofit private organizations that
provide services to HIV-infected individuals and their families--
assist in the planning, development, and delivery of medical and
social services. In addition to funding consortia, states use
title II funds to provide HIV-infected people with home and
community-based care services; continuity of health insurance
coverage; and prescription drugs, such as antiviral medications.
The Division of HIV Services within the Department of Health and
Human Services’ Health Resources and Services Administration (HRSA)
is responsible for awarding and monitoring title I and II grants.

270 be eligible for funding, metropolitan areas must have more than
2,000 AIDS cases or a per capita incidence of 25 cumulative AIDS
cases for every 100,000 people in the population.

In addition to titles I and II, title IIIb supports outpatient
early intervention HIV services for people with AIDS and HIV. For
fiscal year 1994, $21.4 million was awarded to public and nonprofit
private entities. Title IV provides for clinical research on
therapies for pediatric patients and pregnant women with HIV and
provides for health care to pediatric patients and their families.
In fiscal year 1994, §46.5 million was awarded.

‘Ryan White CARE Act funds cannot be used for in-patient care but
can be used for in-patient case management services that expedite
hospital discharge.


50

Mr. Mouica. I will summarize what we have said.

Mr. SHays. We have let everyone know that their testimony was
to be 5 minutes, so if you could just end.

Mr. Mouica. We have said that there is an emerging population
in New York City that has been since affected by the AIDS epi-
demic and that we need to Provide to them accessible and afford-
able health services for all. I will now be happy to answer ques-
tions.

[The prepared statement of Dr. Mojica follows:]


95

within Black and Hispanic communities. The largest single barrier is the
still pervasive attitude of prejudice toward people with AIDS, most
recently evidenced in the statements by Senator Jesse Helms. Whether
stated a virulently or not, there is still a generally sensibility that with
the exception of babies and those unfortunate enough to have needed a
blood transfusion, people with HIV somehow brought it on themselves. The
truth is that according to the public health service says that when you
combine all spending that is applied on research, prevention and treatment
for AIDS/HIV approximately “ billion dollars pales to the 36 billion spent
on heart disease and 6.9 billion spent on cancer.

Sadly, that attitude is just as prevalent in our communities as it is
in our larger society. Often this attitude translates into a complete
denial of the impact of this disease in the African American and latino
communities. In many Eastern cities, blacks and Latinos constitute a
majority of the AIDS cases . In New York City, where AIDS is the number
one killer of women between the ages of twenty -five and thirty -four,
black women , with their Latina sisters , account for 84% of the adult
female AIDS cases. In every risk category used, black people are
disproportionately represented. Thus, even among gay and bisexual men
and intravenous drug users, blacks are more likely to be infected than
their white counterparts .This statistics are not new but have been true
since 1989, yet it has not been until 1995 that communities of color have
begun to recognize the significance of this disease. On average Black and
Latino persons with AIDS are sicker at time of diagnosis than white
people with AIDS and die nearly five times faster. Despite this, many of
our community leaders disavow any responsibility for an organized
community response.

Please do not underestimate the barriers caused by the stigma
associated with HIV/AIDS. AIDS is indeed one of many historical burdens
that weigh down communities of color. But that is an excuse that wears
thin very quickly. The reaction of communities of color has not been only
to the medical aspect of the disease AIDS, but to the related issues of
homosexuality and drug use. These issues have to addressed if we are to
develop service delivery systems that are effective with in our
communities.

Because so many traditional organizations in urban communities of
color for so long refused to address the crisis of AIDS, new organizations


33

adults. A 1993 survey in several States with HIV reporting found women accounted for
54 percent of newly identified HIV infections among youth aged 13-19, and 35 percent of
reported HIV cases among people 20-24 years old. This trend brings with it greater
numbers of children born with HIV infection, until the benefits of the AIDS Clinical
Trials Group (ACTG) 076 trial are more widely available. The ACTG 076 trial
demonstrated that perinatal transmission of HIV could be reduced in a specific cohort of
HIV infected women by two-thirds.

Minority populations have been and continue to be disproportionately affected by the
HIV epidemic. Initially a disease among gay white males, within a few years the
proportion of cases among African Americans and Latinos exceeded their representation
in the US. population. In 1993 and 1994, over one-half of newly reported AIDS cases
were in minority groups, although minorities account for only one-quarter of the U.S.
population. In 1993, 38 percent of reported cases were African American and 18 percent
of Hispanic descent. Minority women have been particularly impacted, with three-
quarters of new 1994 AIDS cases among women reported within the African American
and Hispanic communities.

‘The epidemic has aiso spread geographically and now confronts health and support
service providers and families in all parts of the country. The rising rate of growth of
cases in rural and small urban areas poses new demands in communities confronting
HIV infection for the first time. Concurrently, the epidemic is not shifting out of the
highly impacted urban epicenters, as over two-thirds of new cases were still reported in
high incidence cities between July 1992 and June 1994.

‘The changing face of AIDS also includes a greater proportion of diagnosed individuals
who have no health insurance. A 1993 study showed only 26 percent of persons with
AIDS had private health insurance; 62 percent were covered by some form of pul
insurance; and 12 percent were uninsured (Fleishman and Mor), reducing the likelihood
they will receive cost-effective prophylactic medications and timely primary care.

‘The compelling public health reasons to address the HIV epidemic continue to be those
characteristics of a transmissible, fatal disease which exacts a heavy price from society in
loss of young, productive lives. Unlike heart disease and other chronic illnesses,
HIV/AIDS primarily affects young Americans and curtails their work contributions. The
growing number of persons with HIV requiring care continues to place a heavy burden
on health care delivery systems, particularly on those public health entities that are
already struggling to meet high volumes of uncompensated care. By diagnosing and
treating young people with HIV disease, their productive years are lengthened and their
need for publicly funded care reduced. Through proactive planning and providing a
continuum of care for persons with HIV, significant savings in both economic and human
terms can be gained, and efforts to contain the epidemic strengthened. Our strong
resolve to address this epidemic in a coordinated, comprehensive manner now maximizes
our investment for a healthy America tomorrow.


183

‘The Minority Task Force on AIDS (MTFA), which is a diverse non-profit
organization that originated in Harlem to assist people of color affected by HIV/AIDS,
runs a scattered site housing program. MTFA employs a client centered, community
focused approach to provide education, outreach, advocacy, supportive housing and direct
services. It seeks to improve and extend the quality of life for people with AIDS by
encouraging self-determination,

MTFA premises its work on the understanding that AIDS is not necessarily a
single crisis in an individual’s life, but it is often one of many barriers to the health and well
being of an individual. To reduce the negative consequences of AIDS, it is necessary to
address the myriad of problems that New York’s poorest, most vulnerable populations
face, including the lack of access to health care, education and employment opportunities,
and the prevalence of substance abuse, poor nutrition and inadequate housing.

MTFA's scattered site housing program for people with AIDS currently provides
60 apartment units for 45 single individuals and 15 families, along with case management
and counseling services. MTFA’s support services are designed to meet the needs of its
diverse target population, which includes gay and bi-sexual men and women of color, IV
drug users, and persons with prostitution and prison backgrounds. Because the
organization believes that AIDS affects the well-being of whole communities, MTFA.
extends its services not only to those with the HIV virus and those at risk of infection, but
also to loved ones, family members, friends, and neighbors. Its services include case
management, substance abuse and mental health counseling, preventative TB counseling,
recreational and support group activities, meals program, a transportation program, an
after-school children’s program, HIV prevention, outreach and education, and community
education.

Til. Conclusion

As evidenced by the examples cited above, there is a solution to the crisis of AIDS
among the emerging homeless populations of racial minorities and women. Non-profit,
community-based organizations are reaching out to these populations with a high level of
compassion, will and resourcefulness. It is clear, however, that the problem will never be
adequately addressed without the political will on the part of our society to apply the
needed resources to the problem.

IV. Marty: A Case Study

Please see the attached.


17

Mr. SHays, Thank you very much. Mr. Nadel, if you would like
to speak next? I do hope ou Peel free to take off your jacket.
ir, NADEL. I am fine. Thank yu Mr. Chairman.

Mr. Chairman, Mr. Towns. I appreciate the opportunity to be
here today to discuss our report on access to federally funded serv-
ices by women, minorities, and substance abusers and others, who
have AIDS.

The AIDS epidemic is in a second decade and continues to in-
crease at an alarming rate. In the early 1980’s, communities
to address the need to provide services to people infected with ,
and many community-based and AIDS service organizations were
established to assist primarily gay white men. In 1990, the Ryan
White CARE Act was enacted to improve the quality and availabil-
ity of medical and support services; but with changes in the make-
up of the HIV infected population and the increased availability of
medical and social services through Ryan White, concerns have
been raised about whether the service delivery system has been
able to accommodate the needs of increasing numbers of minorities
and women infected with HIV. Therefore, last year, GAO was
asked to assess whether the CARE Act funding was reaching these
groups.

This morning I would like to focus my comments first on who is
getting services, and second, remaining barriers to care, and my
comments are based on our January 1995 report. Because national
data do not exist on populations served, we, like the IG, went to
the localities and spent time talking to service providers. We vis-
ited Baltimore, Denver, Los Angeles, Sacramento, CA, and the
Maryland suburbs of Washington, DC. In brief, we found that mi-
norities, women and drug users generally use services at a rate
that generally reflect their representation in the infected popu-
lation. Nonetheless, these infected groups may have to rely on
CARE Act funded services more than other subpopulations. There-
fore, there still may be unmet needs for care.

Providers and advocates described barriers to care that are par-
ticularly difficult to overcome, such as homelessness, substance
abuse, language and cultural differences.

I will now turn to our findings in more detail. Even as the profile
of the epidemic is changing, local service delivery systems appear
to be reaching increasing numbers of HIV infected minorities,
women and drug abusers. This is especially important because mi-
norities are becoming infected at a greater rate than whites. For
example, African-Americans represent 12 percent of the Nation’s
population, but accounted for 33 percent of cumulative AIDS cases
as of the end of 1994. Similarly, while Hispanics represent: 9 per-
cent of the population, they accounted for 17 percent of the cumu-
lative AIDS cases. And these percentages, unfortunately, have been
increasing.

Access to Ryan White medical and support services for minori-
ties, women and drug users appears to be in proportion to their
representation in the infected population. In our visits to the five
areas, we compared the HIV infected populations with the number
of clients served for certain periods as reported by the service pro-
viders. These estimates and reports identified such characteristics
as race and ethnicity, gender and mode of transmission. And in my


61

Because the HIV epidemic across communities is not identical, the
AIDS Institute has developed programs and services, with both state
and federal dollars, that strive to establish health and social

services within communities and regions with significant caseloads.

With funds from the Ryan White CARE Act, New York has created three
“reimbursement pools" that provide free nedications, home care, and
primary health care to persons with HIV/AIDS that lack insurance.
To assist us in the targeting of other Title II funding to emerging
and special needs populations, we established a Statewide AIDS
Service Delivery Consortium made up of care providers, persons with
AIDS, and other individuals qualified to offer guidance on our

efforts to serve these populations.

With over $12 million in state funding, we have created Multiple
Service Agencies (MSAs), which are programs located in, run by, and
providing services to minority communities across the state. These
are “one-stop” comprehensive programs, offering a range of services
including prevention education, case management and supportive
counseling. We have also established “community development"
Programs to provide African-American, Latino, Asian/Pacific
Islander and Native American communities with the means to identify

needs and expand service capacity.

In addition to these grant-funded programs, the Institute has
utilized HIV-specific Medicaid reimbursement rates, clinical


180

About half are estimated to be Medicaid eligible, but many are not enrolled. Those
who are not Medicaid eligible typically do not have health insurance.

* Many of the homeless HIV population cycle through the jail and prison systems, and
many are ultimately discharged without access to decent housing, health or support
systems.

There are considerable costs associated with homelessness among the HIV/AIDS
population. According to recent studies:

‘© Atany given time, approximately 30% of all people with HIV disease in acute care
hospitals are there because no community-based residential program is available.

«The average cost of an AIDS acute care bed is $1085 per day.

Il. The Solution

There is a solution to the problem. Over the past few years, supportive housing.
has emerged as a compelling answer to the crisis among homeless persons with AIDS.
Supportive housing is a grassroots movement started in the late 1980s by non-profit
organizations who identified the housing and service needs of homeless populations as a
highest priority. Many of these groups are mission driven organizations who “backed
into” housing development and management from mental health, substance abuse, and
AIDS delivery fields out of frustration with their inability to serve their clients without
providing access to appropriate housing.

The goal of supportive housing for people with AIDS is to enable the tenant to live
a stable, independent life, and to the extent possible, to avoid costly hospitalizations and
emergency treatment. This is a condition almost impossible to achieve in the absence of
permanent, affordable housing that provides a level of supportive help at the right time.
Asa result, many people with AIDS who do not have permanent housing and service
supports end up in a “revolving door” in and out of homelessness, from the streets, to
shelters, to hospital emergency rooms, to treatment facilities, nursing homes, and back
again -- all at significant cost to the individual, the government and the tax payer.

Supportive housing is not only effective, it is cost effective, both in the long and
short run; it stabilizes a population which can then access managed care services rather
than emergency rooms and extended hospitalizations. On average, supportive housing for
people with AIDS costs $27-$44/day, compared to $1,000 to $1,200 for acute care
hospitalization.

The following are examples of some success stories of supportive housing for
people with AIDS.


114

Another emerged group with Lambda Independent Democrats be-
lieves must be addressed is the extremely diverse group of gay men
of color. This past week has been quite a trying one for me. Al-
though I took the week off from work at the New York AIDS Coali-
tion, I did not get much rest. My roommate, a black gay man, was
and is at home quite ill. With spiking fevers, erratic bowel move-
ments, AIDS related dementia, and a host of other challenges, it
has been very tough for him. After coming home last week, my
roommate’s physical appearance is a shadow of what he was before
entering the hospital 2 months ago. In some ways my roommate is
lucky. Many black gay men are not as lucky.

Quite often we will hear from individuals that the AIDS epidemic
has shifted in recent years from gay men to new population groups
of racial minorities and women. I am here today to testify for
Lambda that that while statistics may show that new infections
are slowin, amongst gay men as a whole, cases continue to explode
amongst black and Latino men who have sex with men. In a recent
CDC Morbidity and Mortality Weekly Report, it was reported that
since June 1981 three MSA’s, New York, Los Angeles and San
Francisco, have reported 27 percent of all AIDS cases amongst men
who have sex with men. During the 5-year surveillance period,
rates of AIDS opportunistic infections increased 8 percent, 12 per-
cent and 7 percent respectively in those cities. In all three MSA’s
the rate for white men decreased 20 percent, 16 percent and 3 per-
cent respectively, and the rate for black men, for black men who
have sex with men increased 49 percent, 48 percent and 53 percent
in New York, Los Angeles and San Francisco.

In closing, we implore you to develop services that respond to the
increasing caseloads that are exploding in communities of color and
also taking a close look at the increased caseloads amongst men
who have sex with men.

Lambda implores you to finance resources for these organizations

and we also implore you that too often when we look at combating
the AIDS crisis that what happens is we look at putting out the
next fire. Maybe the vision should involve keeping new fires from
getting started so that new populations will not emerge. When
looking at AIDS in the 1990's, Lambda strongly urges you to keep
in mind that long-range, innovative and courageous strategies
must be develo serving all communities. Lambda encourages
government officials to take leadership in making certain that re-
ality-based HIV rprevention strategies are introduced and supported
throughout the Nation.

And finally, the ultimate goal is to find a cure. Funds must be
continually channeled into research. Thank Pit for your time.

{The prepared statement of Mr. Pressley follows:]


116

Lambda Independent Democrats Page 2

86,794 cases of AIDS were reported in New York State representing one out of every
five reported cases of AIDS in the United States. New York State leads the nation in
AIDS cases among women. Females comprise almost 20% of all adult AIDS cases
here in New York State. From December 31, 1993 to July 31, 1994 there was a 17%
increase in the number of AIDS cases amongst women in our state, and by the end of
1997, it is believed that the number of women with AIDS will double from 1992
Statistics. Of the 86,794 reported cumulative cases of AIDS in New York State at the
end of March 1995, 75,633 or 87% occurred in NYC, and, in fact, New York City has
had more cumulative AIDS cases than Los Angeles and San Francisco combined,
which rank 2nd and 3rd in cities most impacted by the epidemic. As of March 31,
4995, the Borough of Brooklyn, the geographical base of Lambda Independent
Democrats, had 18,355 cumulative cases of AIDS representing nearly of the city's
total. Many of us know that if Brooklyn were to secede from New York City, then it
would be the 4th largest city in the nation; however, many may not know that if
Brooklyn were counted as a city, then it would also rank fourth in the number of AIDS

cases behind New York, Los Angeles and San Francisco.

Our organization is extremely concerned about the development of an HIV and AIDS
care and prevention service network, not only in Brooklyn, but across our city, state and
country as well — a network designed to provide a vigorous response to the havoc that
AIDS has and will wreak on communities across this nation. The Ryan White CARE

Act and Community Prevention Planning structures are steps in the right direction.


4

sistant Secretary of Health, Department of Health and Human Re-
sources, as well from Washington. So we thank you for coming.
I am also going to thank at this time a constituent of mine, if
I may use that, Debra Katz, coming from Stamford to be here.
Gentlemen, you have been sworn in. We will take you in the
order that I introduced you. We would like your testimony to be 5

minutes or less and sincerely welcome it. So we will start with Mr.
TOD.

STATEMENTS OF GEORGE GROB, DEPUTY INSPECTOR GEN-
ERAL FOR EVALUATION AND INSPECTIONS, DEPARTMENT
OF HEALTH AND HUMAN SERVICES; ACCOMPANIED BY WIL-
LIAM MORAN, REGIONAL INSPECTOR GENERAL FROM CHI-
CAGO; MARK NADEL, ASSOCIATE DIRECTOR OF HEALTH
POLICY, U.S. GENERAL ACCOUNTING OFFICE; DR. ERIC
GOOSBY, DIRECTOR OF THE OFFICE OF HIV/AIDS POLICY,
DEPARTMENT OF HEALTH AND HUMAN SERVICES; AND DR.
STEVEN BOWEN, DIRECTOR OF THE RYAN WHITE PROGRAM

AT HE HEALTH RESOURCES AND SERVICES ADMINISTRA-

Mr. Gros. Thank you very much, Mr. Chairman, and Represent-
ative Towns; and I am very pleased to have with me William
Moran, who is our Regional Inspector General from Chicago. He
has supervised numerous studies on the Ryan White Program, in-
cluding the studies that we will be talking specifically about today.

We are here to tell you about the changing face of AIDS.

Mr. Suays. I am just going to interrupt you a second. Can you
hear or is it kind of—yes; what I am going to suggest is that I have
no problem with anyone who wants to sit on this side, I have no
problem with all of you moving down, because I do not think we
are going to reach the back. Halfway through, could you hear, sir?
So anyone who cannot hear, it is pon to be difficult to have this
projected. We have mikes here and we have gotten rid of them, but
we are facing that way; so anybody who wants to sit up here, be
my guest, or anywhere else, just move on down. I am sorry to inter-
rupt you, Mr. Grob.

ir. Gros. That is all right.

Mr. Suays. If you would really make an attempt—if you maybe
take off your coat, you can speak a little louder.

Mr. Gros. I will do that.

Mr. Says. And if you start to speak softly, I am going to make
you put your coat back on.

Mr. Gros. Would it help if I were to turn around and face—

Mr. SHays. I do not even mind if you turn sideways, if you would
like. No, you just speak loudly, we are going to get you to speak
real loud.

Mr. Gros. OK. Well, we are here today to tell you about the
changing face of AIDS, about emerging populations who are at risk
of contracting the virus and of suffering and dying from AIDS, and
about the emerging network of care whose framework was estab-
lished under the Ryan White Act to assist people with this disease.

This concept of the network of care is quite central to my testi-
mony and I would like to pause for a moment to define what I
mean by it. Under the Act, there are planning councils at the met-


Housing Works, tne.
594 Brooday

Suite 700

New Yok, HY 10012

Phooe 217 966-0466
Fox 212 966-0869

93

Written Testimony to the

Subcommittee on Human Resources and
Intergovernmental Relations

Submitted by Keith D. Cylar, Co-executive Director
Housing Works, inc.

Introduction

Mr. Chair and distinguished Members of the Subcommittee
on Resources and Intergovernmental Relations, | am pleased to
provide you with testimony on behalf of Housing Works, the
nation’s largest provider of housing and supportive services for
homeless people living with AIDS and HIV and the largest
minority-controlled AIDS Service Organization in the country.

| am Keith Cylar, Co-executive Director of Housing Works.
Since opening our doors in 1991, Housing Works has provided
advocacy, permanent housing and a wide array of supportive
services to thousands of homeless men women and children.
Currently, Housing Works is providing supportive housing to over
700 men women and children, and a host of supportive services
to over a thousand people who are still awaiting a housing
placement.

About 90% of our clients are Black or Latino. One third of
our clients are women, some 70% of whom have dependent
children. Many of our clients struggle with mental health
problems, chemical dependence and a host of other issues,
including trauma from physical and sexual abuse, that make AIDS
just one of many complex and often chronic problems. Beginning
with housing, we offer our constituency the tools to reintegrate
themselves into a caring community, through which they are able
to reclaim once ravaged lives. We haven't found a secret cure
for AIDS, but we have found the means to give people hope and
the sense that they are partners in plotting their own future. As
proof, | offer you the fact that some 15% of our full time staff
first came through our doors as homeless people in need.


Increasing the Provider Base

A key feature of building expanded service capacity has been supporting the
development of a larger number of providers willing and able to serve persons with
HIV/AIDS. Under Title I, more than 1700 providers now deliver a comprehensive
range of medical care and related services to persons with HIV disease living in 42 major
metropolitan areas. Under Title II, HIV care consortia have contracted with over 1500
providers to ensure the availability of care statewide. There are more than 130 providers
of primary care and prevention services funded under Title I1I(b), serving a high
proportion of women and minority people living in urban and rural areas. Through Title
TV, services for women and children are available through 199 affiliated clinical sites
located throughout 26 States.

The activities of the AIDS Education and Training Center (AETC) Program have
provided critical support in developing and sustaining a broad-based network of
providers trained in HIV care. Through a wide range of activities, including regional
workshops, conferences, irect and telephone consultation services for physicians and
other health professionals, AETCs have supported the goals of providing up-to-date
information on the treatment and care of people with HIV/AIDS. These activities have
had a significant effect in increasing services for persons with HIV, and the Department
recommends that this program be formally linked as an integral component of the Ryan
White CARE Act.

Federal, State, and Local Partnerships

‘A major hallmark of the Ryan White CARE Act has been the successful partnerships
developed between the Federal government and State and local HIV planning councils
and consortia. In a time of limited resources, the need to effectively target and
coordinate efforts to address the HIV epidemic is increasingly urgent. Through the Ryan
White CARE Act, Federa! resources are provided to States and localities to assess their
needs and design effective strategies to meet them. Because the characteristics of HIV
and its impact differ widely from city to city and State to State, locat flexibility has been
essential to use resources most efficiently. A unique feature of the Ryan White CARE
Act has been the participation of those groups most affected by HIV--persons living with
HIV and the providers who serve them--in the comprehensive needs assessment and
planning processes, including setting local priorities and making funding allocation
decisions among them.

Under Title 1, local planning councils have emphasized the vitally important participation
of people with HIV disease in these local processes. Among the 34 Title I planning
councils in Fiscal Year (FY) 1994, the mean and median percentage of council members
who reported having HIV/AIDS was 20 percent. Representation from minority
communities is also vital as these communities bear a disproportionate burden of new


125

tribution of condoms in schools. That is where children are, that is
where large numbers of teens are, that is where they are every
day, they have people there that they trust. If there is a healt
clinic at that school, those teens will take advantage of it. And in
New York State, every single health clinic requires that there be

arental consent for any young person to receive health services.
Bo I advocate that this is an important aspect of any school-based
health program.

In addition, we have tried to do, we have begun to initiate a little
bit mental health services funded through the Department of Men-
tal Health in the State, connecting a mental health component to
school-based health so that there is crisis intervention services as
well as long-term services to children and hopefully eventually to
their families.

What have we done in the State? We have, as I have said, we
have begun to look at school-based health as our primary system
of delivering health care to young people in particular and we
would like to continue to strengthen that. We have even in our Re-
publican Senate, we have been able to get a 2-year extension on
our school-based health funding in the budget process this year, so
there is a lot of hope there.

We have been very reluctant to vote out a bill that I have spon-
sored for some years along with the Health Chair in the Assembly,
a needle exchange bill, which we would certainly like to see done;
but we have not been able to do that yet. We have been able to
maintain the mental health funding, which is specifically targeting
mental health services in schools, and we have been able to so to
speak target some of our resources, the AIDS prevention resources,
toward prevention education and training.

I would only ask that the Ryan White funding reflect the reality
that prevention is the—at this point in time the only cure so to
speak, and that we need to be able to continue to treat adolescents
as a particular and special needs category of people that we have

sibility of turning around if we can work with them in the
right way, if we can reach them early enough, and if we can pro-
fade them with information which they can use to protect their
ives.

Let me just invite you, whenever you have another opportunit;
to come to Brooklyn, about three blocks from here the Jewis!
Board of Family Services has an excellent example of a day treat-
ment, AIDS day treatment program which is very, very wonderful.
It is in the district of Congressman Towns and myself and I think
that it is where we really need to be going as one aspect of dealing
with this issue. Thank you.

Mr. Suays. Let me just go through a series of very brief ques-
tions. Were you intending to testify as well?

Ms. SANDORF. Yes, sir.

Mr. Suays. I am sorry. OK, that was not made clear to me, I am
sorry; so I welcome your testimony. I am going to be pretty strict
on your time, so I am going to ask you to not read.

Ms. SANDoRF. No, I am cutting this down about three-quarters.

Mr. Suays. OK, but feel inclined not to read, I think you will
cover the big stuff.


100

Mr. SHays. Well, your statement was very appreciated. Was
there anything that you said that was in your statement or you
covered it pretty well, did you not?

Mr. CyLar. There are some things that are not in my statement.

Mr. Suays. That will be inserted into the record.

Mr. Cy.ar. Thank you.

Mr. Snays. We are going to come back with some questions took,
as well.

Lucie—Mrs. McKinney.

Mrs. MCKINNEY. Mr. Chairman, before you put on the green
light, I have two things to say. One, my testimony was fourteen
minutes long and I have cut it to seven, and I hope that is OK;
and second, to me this is a hallmark day. I think it will be the first
time somebody has not asked me to talk softer.

Mr. Suays. This is true.

Mrs. MCKINNEY. This is true.

Mr. Suays. So you are basically saying do not turn this on until
2 minutes have gone by, is that what you are saying?

Mrs. MCKINNEY. At least.

Mr. SHays. Without objection, wait 2 minutes. No, you can start
at green.

Mrs. MCKINNEY. The subject of this hearing, the Ryan White
CARE Act, is of the utmost importance to me and for the 18 non-
profit organizations in Connecticut, who to a large extent rely on
our government's promise to commit the necessary resources to
care for persons with AIDS.

Ryan ite and AIDS prevention programs are pivotal compo-
nents to any successes we may achieve in our ongoing war against
HIV disease, but it has been my experience that you cannot suc-
cessfully alter the spread of this disease without first providin
safe havens for people to be cared for. HOPWA is that vital lin!
which makes Ryan White and HIV prevention dollars a vehicle for
successfully combating the ever-burgeoning numbers of persons
with HIV/AIDS who are at risk of homelessness or in fact already
homeless.

To impose substantial cuts on Ryan White and HOPWA or even
threaten them with elimination is nothing less than foolhardy, and
would virtually cripple a marriage of program dollars which at the
very least meet the basic needs of persons with AIDS in a cost ef-
fective, compassionate setting.

The Connecticut AIDS Residence Coalition plays an important
role in the lives of Rersons with AIDS in Connecticut. Eighteen res-
idential programs have been created where none existed before;
coalitions have been formed between service providers to manage
these dollars so that matching funds could be obtained. These pro-
grams will not continue without the ongoing commitment of funds
‘or both Ryan White and HOPWA.

Let me also add here that the needle exchange program in New
Haven, the first in the country, was highly successful, greatly re-
ducing HIV transmission in the intravenous drug population.

Mr. SHays. You said in New Haven?

Mrs. MCKINNEY. This is in New Haven.

HOPWA and Ryan White programs are worth saving and fund-
ing. The return is enormous on what I consider a small investment



41

Missouri: Missouri has developed a network of 116 primary care physician providers to
serve rural patients. Patients who do not have private insurance or Medicaid are able to
receive medical care, with services p:ovided closer to their homes. Through a SPNS
grant, 15 rural resource centers were established, each of which has trained and activated
a large corps of volunteers. The centers also operate telephone support groups designed
to overcome barriers of distance and poor health.

North Carolina: North Carolina has emphasized the development and support of HIV
task forces in local counties to assure adequate assessment of service needs and the
provision of appropriate resources. All 100 counties now have access to HIV care
services through 15 regional consortia.

In addition, twenty-four American Indian tribes have benefited from Ryan White CARE
Act funding of a nearby major service provider, enabling clients with AIDS to remain at
home in rural or reservation settings instead of traveling to urban centers for care.

Pl: 1” Future

When the Ryan White CARE Act was enacted five years ago, it represented the first
serious targeted Federal effort to support local and State care for persons living with
HIV. Over the past four years, this process has led to the extraordinary development
and enhancement of systems of care to provide comprehensive services to persons living
with HIV disease. ‘The Ryan White CARE Act works, It combines targeting of
resources, local planning and flexibility in directing funds to newly impacted areas and
emerging populations. It has substantially increased the number of people in care while
saving money. The basic structure has been successful, requiring only limited changes.

‘The Department's experience in administering the program and reviews by external
organizations have identified several issues that this reauthorization process will provide
the opportunity to address. These include questions ranging from appropriate funding
formulas to the need for more program evaluation at the local and national level.

The Department has been working, in collaboration with grantees, national
organizations, providers, and people living with HIV disease, on these and other program
implementation and improvement issues. Progress has been made and the work
continues to both streamline processes and administrative requirements and retain and
strengthen accountability for service delivery.

From deliberations regarding reauthorization of the Ryan White CARE Act the
Department has developed specific recommendations to address these issues and meet
the challenges the Department foresees in the next five years of the epidemic. These
issues and recommendations are summarized below.

Program experience has demonstrated that service delivery in the early years of a Title I

10