Copyright 1999 Federal Document Clearing House, Inc.
Federal Document Clearing House Congressional Testimony
April 15, 1999
SECTION: CAPITOL HILL HEARING TESTIMONY
LENGTH: 2703 words
HEADLINE:
TESTIMONY April 15, 1999 MILDRED WILLIAMSON HOUSE
APPROPRIATIONS LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION
LABOR,HEALTH,HUMAN SERVICES AND EDUCATION
BODY:
HOUSE OF REPRESENTATIVES COMMITTEE ON APPROPRIATIONS SUBCOMMITTEE ON LABOR,
HEALTH AND HUMAN SERVICES, EDUCATION AND RELATED AGENCIES TESTIMONY BY MILDRED
WILLIAMSON, MSW PRESIDENT, BOARD OF DIRECTORS AIDS POLICY CENTER FOR CHILDREN,
YOUTH & FAMILIES APRIL 15, 1999 Good morning. My name is Mildred Williamson
and I am the Administrator of the Woodlawn Health Center and Englewood Family
Practice Clinic of the Cook County Bureau of Health Services. From 1989 to 1998,
1 was the Administrator of the Women and Children HIV Program at Cook County
Hospital. The Women and Children HIV Program provides family-centered,
community-based and comprehensive HIV and AIDS services for low-income children,
youth, women, and families in the Chicago metropolitan area. This program is
principally funded through Title IV of the Ryan White CARE Act,
and receives additional support from Titles 1, 11, and III of the CARE Act as
well as NIH research grants. I am here today in my capacity as President of AIDS
Policy Center for Children, Youth & Families. AIDS Policy Center is a
national nonprofit organization founded in 1994 to help respond to the unique
concerns of children, youth, women, and families living with, affected by, or at
risk for HIV and AIDS. AIDS Policy Center conducts policy research, education,
and advocacy on a broad range of AIDS issues. Our membership includes
individuals and organizations throughout the United States, including the Women
and Children HIV Program in Chicago. Our board of directors is comprised of HIV
service providers, researchers, and policy experts as well as HIV-affected young
people, women, and family members. I would like to begin my testimony by
acknowledging the commitment that Chairman Porter and the members of this
subcommittee have shown to AIDS. Without your leadership and support, we would
not have the Women and Children HIV Program at Cook County Hospital or other
programs like it across the nation. I would also like to acknowledge the
extraordinary efforts of Representative Nancy Pelosi to improve the lives of
children, youth, women and families who are affected by HIV and AIDS.
Representative Pelosi received a special award from AIDS Policy Center last year
for her contributions to the fight against AIDS, and it was a well-deserved
honor. And Representative Jackson, as a r6sident of your district, it is a
special honor and pleasure to testify before you today. I am here to ask for
your continued support for AIDS prevention, research, housing and care programs.
AIDS Policy Center fully supports the FY 2000 appropriations recommendations
document developed by the National Organizations Responding to AIDS coalition,
which identifies funding needs for a broad range of federal programs. Today, I
would like to focus my comments on the Ryan White CARE Act,
which is the most critical federal program dedicated to people living with HIV
and AIDS. The programs of the CARE Act, including Titles I, II, III, and IV, and
Part F, work together to provide a seamless system of HIV/AIDS services in
communities across the nation. I would specifically like to discuss Title IV of
the CARE Act, which provides funding for medical care, social services, and
access to research for children, youth, women and families, the vast majority of
whom are low- income people of color. The Title IV program is currently funded
at $46 million, and the President has requested a $2 million increase for Title
IV in FY 2000. 1 want to assure the subcommittee that I understand the budgetary
constraints that Members of Congress are facing this year, and I am very
grateful that the President's FY 2000 budget recommends any increase at all for
Title IV. As a longtime public health advocate and director of a community
health center, I am a supporter of many of the important federal health programs
that are under this subcommittee's jurisdiction. However, the HIV epidemic is
exacting such a toll among American children, youth, women and families that we
must request an additional $15 million for Title IV in FY 2000, for a total of
$61 million. I want to make three main points today. 1 .There is a great need
for increased resources to serve children, youth, women and families affected by
HIV/AIDS. Children, youth, and women with HIV are living longer and continue to
need care, and high rates of new HIV infections among youth and women continue.
2.Title IV of the Ryan White CARE Act is a success story. It
has enabled communities to respond quickly and efficiently to the HIV epidemic
among children, youth, women and families, and has effectively reached people of
color. 3.Title IV projects are severely under-funded. The President has
requested $2 million in additional funds for Title IV, and this amount is not
enough. Continuing Need for Title IV The HIV epidemic continues to have a
devastating impact on women, children, youth and families in the United States.
The Centers for Disease Control estimates that between 120,000 and 160,000 women
are living with HIV in the United States, and that about 52,000 of them have
AIDS. 1 The proportion of new AIDS cases attributed to women tripled from 7% in
1985 to 22% in 1997. In recent years, new treatments for HIV have helped to
reduce AIDS- related deaths among women. However, women with HIV have not
benefited from the treatment kevolution as much as men. While AIDS-related
deaths among men declined by 44% from 1996 to 1997, AIDS-related deaths among
women only declined by 32%. 2 Women of color continue to be disproportionately
impacted by HIV /AIDS. Although African-American women and Latinas make up about
21% of the U.S. population, they account for almost 80% of the AIDS cases
reported among women in 1997. 3 Now for some good news. From 1996 to 1997, the
number of children who were newly diagnosed with AIDS declined 40%. This
positive trend is due in part to the availability of new medications that have
helped to improve and prolong the lives of children who are living with HIV. The
trend is also due to the declining rate of new HIV infections resulting from
perinatal HIV transmission. From 1994 to 1997, the number of reported pediatric
AIDS cases resulting from perinatal transmission fell 55%. 4 5 This decrease is
thanks to the continued success of efforts to promote voluntary HIV testing and
zidovudine therapy for pregnant HIV- infected women and their infants. 1 Centers
for Disease Control and Prevention (CDC), Critical Need to Pay Attention to
HIVPreventionfor Women: Minority and Young Women Bear Greatest Burden (Atlanta:
CDC: 1998) 1. 2 CDC, HIVIAIDS Surveillance Report I 0. 1. 3 CDC, HIVIAIDS
Surveillance Report 9.2. 4 CDC, HIVIAIDS Surveillance Report 7.2. 5 CDC,
HIVIAIDS Surveillance Report 9.2. Some people have wrongly concluded that, as
fewer children are born with HIV infection, fewer resources are needed for
pediatric and maternal HIV/lAIDS services. In fact, as the death rate among
children with AIDS goes down, more children than ever before are living HIV and
AIDS in need of comprehensive services. Members of the subcommittee, in our
excitement over the declining rate of new HIV infections among children, we must
not abandon those children who are already living with the disease. In addition,
it will be a challenge to continue to reduce perinatal transmission as the
number of HIV-infected women of childbearing age keeps rising. More resources
are required to provide HIV-positive pregnant women with prenatal care, HIV
counseling and testing, and access to treatment to improve their health and
reduce perinatal HIV transmission. Perhaps the most dire AIDS statistics are on
the impact of the epidemic among our nation's young people. By mid-1998,
approximately 3,300 adolescents ages 13 to 19, 23,700 young adults ages 20 to 24
and 90,900 young adults ages 25 to 29 had been reported with AIDS.
Unfortunately, these figures are but the tip of the iceberg. It is estimated
that about half of new HIV infections in the U.S. occur in people under age 25,
and one quarter occur in people under age 22. 6 Because of the delay between
infection with HIV and the development of AIDS, many - - perhaps most - - of the
young adults who develop AIDS in their twenties were infected with HIV as teens.
In addition, youth of color are disproportionately affected by HIV. Among young
people with AIDS, 57% of males and 77% of females are African-American or
Latino. 7 Young people are less likely to be insured by Medicaid or private
insurance than any other age group. This lack of health care access, coupled
with a lack of adequate HIV outreach, counseling, and testing programs targeting
at-risk youth, have resulted in a large gap between the total number of
HIV-infected youth and the number of youth in care. Studies 8indicate that HIV-
infected young people tend to enter care only once they are already very sick. 8
Ryan White Title IV: A Success Story Members of the subcommittee, it is clear
that the HIV epidemic among children, youth, women and families continues to be
a crisis of historic proportions. But I am proud to tell you that, with your
support, Title IV of the Ryan White CARE Act has helped local
communities to face this crisis effectively. Title IV provides competitive
grants to public and private nonprofit entities to develop and sustain
comprehensive, coordinated systems of HIV care and services for low-income
children, youth, women and families. Title IV funds may be used to provide a
variety of critical services, including primary medical care, social services
such as case management, and access to research. 6 Philip S. Rosenberg et al.,
"Declining Age at HIV Infection in the United States," New England Journal of
Medicine 330: 789. 7 CDC, HIVIAIDS Surveillance Report IO. 1. 8 Audrey S. Rogers
et al., "The REACH Project of the Adolescent Medicine HIV/AIDS Research Network:
Design, Methods, and Selected Characteristics of Participants," Journal of
Adolescent Health 22 (1998): 300-31 1. A unique aspect of Title IV programs is
that they provide "family- centered. care," which means that care and services
are built around the needs of whole families affected by HIV. Although Congress
first authorized the Ryan White CARE Act in 1990, the Title IV
program was not funded until FY 1994. That year, community programs that had
previously been funded through the federal Pediatric and Family AIDS
Demonstration program were moved into Title IV. When the CARE Act was
reauthorized in 1996, Congress made a number of important changes to Title IV.
Most importantly, the reauthorized CARE Act made clear that the mandate of Title
IV is to serve not only infants and children, but also HIV-positive youth and
women, and the family members of these individuals. Title IV currently funds 54
grantees in 26 states, the District of Columbia and Puerto Rico, and these
grantees provide or arrange for direct HIV services at several hundred clinical
sites. These projects are enrolling - - and retaining - - extremely vulnerable
populations in care. In 1997, Title IV provided services to over 45,000
children, youth, women and families, and this number continues to grow. The
Title IV program served 13% more individuals in 1997 than in 1996, with
significant increases in all age groups. Women and children. A major success of
the Ryan White Title IV program has been to help dramatically reduce the rate of
perinatal HIV transmission in the United States. Title IV projects reduce
perinatal transmission by providing outreach, counseling, and testing to women
of childbearing age and health care to pregnant women and their children. The
recent Institute of Medicine report to Secretary Shalala on efforts to reduce
perinatal transmission identified the key role that Ryan White Title IV projects
have played in this effort. The report also recommends that the existing
infrastructure for providing perinatal HIV prevention and treatment should be
strengthened by building on the Title IV service network. Youth. Title IV
projects are leading the national effort to engage and retain HIV-positive young
people in comprehensive health care. From 1995 to 1997, the number of young
people ages 13- 24 served by Title IV increased by 225%. Title IV projects have
been particularly successful at reaching young women, one of the fastest-growing
HIV risk groups in the nation. In collaboration with the National Institutes of
Health, the Title IV program has established the REACH Project, a research
program that is studying the medical, psychosocial, and behavioral aspects of
HIV in adolescents. With approximately 350 teens enrolled at 15 sites across the
country, the REACH Project is the source of much of what is known about HIV
disease in adolescents. Last year, a new Title IV Adolescent Initiative was
established to increase the number of HIV- positive youth receiving primary
medical care and support services in a youth sensitive environment. This
initiative currently provides funding to five model youth programs, including
one based at Cook County Hospital in Chicago. People of color. Title IV also
continues to lead the Ryan White CARE Act in
reaching people of color. In 1997, 58% of Title IV clients were
African-American, and 23% were Latino. The number of African-American clients
reported by Title IV projects increased by nearly 80% from 1995 to 1997, and
continues to grow. The number of Latino, and Asian-American clients served by
Title IV has also steadily increased. In FY 1999, Title IV received a $2 million
increase for services for African-American children with HIV, and this funding
is helping the program to increase access to care for this underserved group of
children. Title IV has also proven to be remarkably efficient and cost-
effective. Title IV is a very small program, representing only about 3% of FY
1999 funding for the Ryan White CARE Act as a whole. Yet the
flexibility of Title IV funding has enabled HRSA to quickly move resources into
the communities that are experiencing rising rates of HIV infections among
children, youth, and women. Title IV projects are also enabling low-income
children, youth and women to take advantage of the promising new treatments for
HIV. At the Women and Children HIV Program at Cook County Hospital, for example,
the multidisciplinary team provides patient access to new HIV treatments and
assists patients with adherence to the strict medication regimens. This effort
has significantly improved the health of many clients. In 1997, the program saw
a remarkable 60% decrease in the number of hospitalizations. FY 2000 Funding
Recommendation Despite all of the successes of the Ryan White Title IV program,
much more remains to be done. AIDS Policy Center and the National Organizations
Responding to AIDS coalition recommend a total funding level of $61 million for
Title IV in FY 2000. This would be an increase of $15 million over FY 1999. This
funding is essential for us to keep pace with the growing demand for services.
Title IV clients are now living longer and continue to need care, and new
clients continue to be identified. We recommend that these funds be spent in the
following manner: -$6.5 million to expand the new Title IV Adolescent
Initiative, which is severely under- funded. Fifteen community-based programs
that applied for funding under the Adolescent Initiative were approved for
support but not funded because of limited appropriations. -$6.5 million to
expand outreach and care activities for HIV- positive women and their children,
including activities to reduce perinatal HIV transmission. -$2.0 million to
support existing comprehensive care sites to serve the ever-growing number of
clients in need and to address the increasing cost and complexity of providing
quality care. These additional resources for Title IV would also be an important
step towards eliminating racial and ethnic disparities in H1V/AIDS care. A large
majority of the children, youth, women and families benefiting from these new
resources would be African- American or Latino. Members of the subcommittee,
thank you for your time. I will be happy to answer any questions that you may
have.
LOAD-DATE: April 21, 1999
