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Congressional Testimony
March 02, 2000
SECTION: CAPITOL HILL HEARING TESTIMONY
LENGTH: 3800 words
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TESTIMONY March 02, 2000 GUTHRIE S. BIRKHARD MD, MPH DIRECTOR AIDS INSTITIUTE
SENATE HEALTH, EDUCATION, LABOR & PENSIONS AIDS FUNDING
BODY:
Testimony Guthrie S. Birkhead, M.D., M.P.H.
Director, AIDS Institute New York- State Department of Health
Presented to the Senate Health, Education, Labor & Pensions
Committee March 2, 2000 IMPACT OF RYAN WHITE C.A.R.E. ACT IN NEW YORK AND
RECOMMENDATIONS FOR C.A.R.E. ACT REAUTHORIZATION Good morning. My name is
Guthrie Birkhead. I am the Director of the AIDS Institute at the New York State
Department of Health and I am pleased to speak to you today on
behalf of Commissioner Antonia Novello. New York State has made an unprecedented
commitment in both staff and finding resources to fight the battle against AIDS.
The AIDS Institute administers the Ryan White CARE Act Title II funds that go to
New York State. I am pleased to have the opportunity to speak to you regarding
HIV/AIDS in New York State and the importance of the Ryan White CARE Act in
helping us provide comprehensive services to persons with FEWAIDS in NY. Let me
begin by telling you a little about the F1IV epidemic in New York State.
Approximately 140,000 AIDS cases have been reported in New York State and
approximately 55,000 New Yorkers are living with AIDS -- about 19 percent of the
national total. The epidemiology of AIDS in New York is different from many
other areas of the country. Of those living with AIDS, at least three quarters
are members of minority groups: 43 percent are Black, 32 percent are Hispanic,
23 percent are White, and 2% are Asian American, Pacific Islander or Native
American. Women make up 26% compared to 74% for men. Injection drug use is the
most common risk factor reported in 40% of cases. Persons diagnosed with AIDS
are just the tip of the iceberg of HIV infection. It is estimated that the
number of persons living with HIV, beyond the 55,000 with AIDS in New York
State, is 75,000-115,000. We will have a better idea of the number of persons
with HIV, and the number of new HIV infections each year, as HIV reporting is
implemented in New York beginning this year. In discussing the impact of the
Ryan White CARE Act on New York State, it must be noted that New York began to
organize its response to the HIV/AIDS epidemic with the creation of the AIDS
Institute within the State Health Department in 1983. By 1991,
the State had built a system of HIV care that included ambulatory care, hospital
care, home care, nursing home care, and case management supported by Medicaid
and State grant dollars; a range of supportive services paid for by State and
federal grant funds; and the AIDS Drug Assistance Program, or ADAP, which began
in 1987. When federal Ryan White funding became available in 1991, New York
State's system of community-based health care and services was
already well developed; Ryan White funds were used, along with increases in
State and CDC resources, to expand and augment this system. Specifically, Ryan
White resources were used to: Augment existing initiatives, most notably the
ADAP and home care programs for the uninsured; Extend primary
care services to the uninsured; Fund new community-based case
management and supportive services programs; and Establish Ryan White IRV care
networks throughout the State. The care networks are local groups of providers
in 19 geographic area's who work with the State health
department to determine local program priorities and funding allocations. As the
number of people with HIV and AIDS in New York has increased over the years, so
has the funding available through the CARE Act. New York State receives about
$285 million for HIV/AIDS services through all titles and sections of the Ryan
While CARE Act. We in turn will provide more than $143 million in state dollars
for AIDS programs under Governor Pataki's 2000-2001 budget. Ryan White funding
is an essential source of support for New York's continuum of HIV services and
has had a tremendous impact on the health and quality of life
for New Yorkers affected by HIV/AIDS. A primary impact of the Ryan White CARE
Act in New York is to make available existing and emerging HIV/AIDS therapies to
uninsured persons who are above the level of Medicaid
eligibility. In New York State, the ADAP model has been expanded and is now
known as the "HIV Uninsured Care Programs." These programs play
a vital role in New York State's health care system for people
living with HIV/AIDS. The program has three components: ADAP,. the traditional
program that assures access to drugs for uninsured and
underinsured New Yorkers with HIV/AIDS; ADAP Plus, a program which provides
access to ADAP enrollees to primary care services and laboratory tests for HIV
disease management; and The Home Care Program, which provides more intensive
medical services needed to maintain uninsured and underinsured
people in their homes and avoid costly hospitalization or nursing home care.
Through these programs, providers are reimbursed on a fee-for- service basis for
the delivery of HIV services and medications. The approaches are client-centered
and seek to empower individuals with no or inadequate insurance to access needed
services. The programs are primarily supported by federal funds under Ryan White
Title If along with an appropriation of state funds. In addition, the Department
of Health has formed unique partnerships with the Title I
Eligible Metropolitan Areas (EMA's) in New York, which predominately support the
ADAP Plus ambulatory insurance program, to jointly support the programs. Thus,
the HIV Uninsured Care Programs are an example of what can be
accomplished by blending funding from all sources, State and Federal, to ensure
state-of-the-art care for HIV-positive persons. The introduction of combination
antiretroviral therapies for HIV in 1995 has had a dramatic effect in reducing
progression of HIV to AIDS and AIDS deaths. As a result, New York's ADAP program
has experienced explosive growth in the number of individuals accessing care and
in expenditures during the past three years. More than 52,000 people living with
HIV/AIDS have enrolled in ADAP since its inception; more than 20,000 were
enrolled in 1999. To illustrate the growth of the program, let me give you some
figures on monthly utilization. In January 1996, approximately 4,600 people were
served. In December 1999. 10,300 were served -- an increase of about 124 percent
in almost three years. More dramatic is the increase in monthly expenditures.
Expenditures for the month of January 1996 were $2.2 million. By December 1999,
monthly expenditures were $11.3 million - an increase of more than 400 percent.
This is due to the expense of the combination HIV therapies, which may run
$12-15,000 per person per year. The ADAP Plus ambulatory insurance program has
also seen a doubling of utilization and annual expenditures for medical care and
laboratory services. Through ADAP, New York has been able to assure that all of
the populations affected by HIV have equal access to the standard of HIV care -
specifically combination therapy. In the last quarter of 1999, 80 percent of
ADAP participants were using three or more antiretroviral drugs in combination,
while another 11 percent were taking two-drug combinations. Our ongoing analysis
shows no significant differences in the rates of access to antiretrovirals by
gender, race/ethnicity, income, or HIV risk factor. If not for the availability
of Ryan White funds for ADAP - and the increases in ADAP supplemental funds
available under the CARE Act - New York would not be able to offer access to the
standard of HIV care to all of its residents affected by HIV. The combination
therapies not only allow persons with HIV to live longer and healthier, allowing
many to be able to return to the work force. they also reduce the risk of HIV
transmission to others. However, treatment for HIV is not simply a matter of
writing a prescription and paying the pharmacy bill. Quality
health care, case management, treatment education and adherence
support programs are necessary to allow people to stay on schedule with their
medication. The CARE Act has been instrumental in maximizing the potential of
these new drugs to extend and improve life through a comprehensive system of
care and support services. Successful adherence to MV medications is
particularly critical because MV develops resistance to the combination
therapies very quickly if medication doses are missed or delayed. Resistant
strains could limit the effectiveness of HIV drug therapies in the future. Ryan
White Care Act funding is now being used in New York to help persons with HIV
stay on schedule with their medications and improve the effectiveness of the
therapies. Another significant impact of the Ryan White CARE Act on New York
State is our ability to effectively meet a challenge which has existed in our
State since the beginning of the epidemic -- that is, the challenge of making
HIV services accessible to those populations who are not linked to the
health care system and are most difficult to reach and at
highest risk: substance users; communities of color; the homeless; women and
children; youth, particularly youth on the street and young gay men; and persons
with multiple diagnoses (HIV, mental illness and substance use). New York has
integrated funds from State and Federal sources to design population-based
program models that offer a comprehensive package of services to all affected
populations throughout the State. For example, we have located HIV services in
settings where affected populations already receive services, like substance
abuse treatment settings and agencies serving communities of color; we have
co-located HIV services with support services that facilitate access to care;
and we have brought the services to the client, via mobile vans and via home
visits. In designing initiatives and determining the relative priority for
program models, we have worked closely with the Ryan White Title 11 networks
which have been established throughout the state, with our Title I EMAs and
their planning councils, and with the private, not-for-profit, and academic
communities. All initiatives are planned and prioritized with the participation
of infected persons and health and human services providers on
the front lines. This is another significant effect of the Ryan White CARE Act -
it has fostered the establishment of local and state partnerships at many
levels, contributing to our success in ensuring access to a continuum of HIV
care services for persons in all parts of the state and at all stages of the
disease. These programs, put into place with a combination of Ryan White CARE
Act funds in conjunction with Medicaid and state grant funds have resulted in
improved access to care, reduced hospital costs, and reduced morbidity and
mortality from AIDS. Expensive hospital utilization has been reduced, with
drastic decreases in hospital discharges and lengths of stay. Hospital discharge
data show a reduction in HIV/AIDS hospitalizations from 65,000 in 1995 to less
than 45,000 in 1998 -- a decrease of more than 30 percent. The average f1IV/AIDS
hospital length of stay was 18.9 days in 1990 and 10.2 days in 1998 -- a
reduction of more than 45 percent. In 1990, 50 percent of stays were ten days or
less, and in 1998, 75 percent were ten days or less. In addition, the
availability of combination antiretroviral therapy and a full continuum of HIV
services in New York State has resulted in a dramatic reduction in HIV-related
mortality. Between 1994 and 1995, there was a one percent reduction in all
deaths from HIV/AIDS. Between 1995 and 1998, there has been a decline in
HIV/AIDS deaths of more than 70 percent. And effective therapy will prevent the
development of anti retroviral resistance and reduce HIV transmission to others.
Reauthorization of the Ryan )White CARE Act is critical to our efforts in New
York to provide quality health care for persons with
HIV/AID:)S. I would like to discuss recommendations for the reauthorization of
the CARE Act that will enhance our ability to serve persons with HIV/AIDS. A
complete list of our recommendations is included in my written testimony, but I
will highlight just a few now: (1) First, we recommend that Congress maintain
the existing Title structure of the CARE Act, with ADAP supplemental funds as a
component of Title 11 funding to states, to minimize potentially harmful service
disruptions. (2) Second, maintain the existing base Title 11 funding formula and
the separate ADAP allocation formula, based on estimated living AIDS cases until
a study is conducted of alternatives to the current formula. As I stated
earlier, data on HIV, rather than AIDS, is a preferable basis for the funding
formula. However, it will take states like New York who are just now embarking
on HIV Reporting a year or two to get the system fully operational and producing
quality data- (3) Because the number of people living with HIV continues to
increase we recommend expanded authorized funding levels for all Titles of the
Act. (4) We recommend further, that the reauthorized CARE Act allow ADAP
supplemental funds to be used specifically for medical monitoring, medications
adherence support, and laboratory testing, all of which are key components of
HIV treatment. (5) Getting people tested for HIV and into care as quickly as
possible is important for successful HIV treatment. Therefore, CARE Act funding
should be allowed to be used for a full range of outreach activities and for HIV
counseling and testing for purposes of case finding in al I Ryan White-funded
settings, in order to identify MV-positive persons and bring them into care.
This is currently allowed by Titles M and IV, and should be allowed by all
Titles. (6) We also need flexibility in administering care act funds. We
recommend that Congress not impose a cap on the use of funds for quality
assurance and quality improvement activities, thereby limiting our ability to
carry out these essential activities. Also, quality management programs should
not be defined specifically in legislation. These are important programs, but
the Act should give states the flexibility we need to implement programs
applicable to our specific service delivery systems and program needs- (7)
Finally, do not require in statute that we conduct planning and priority setting
based on the needs of individuals not in care. This information cannot be
routinely gathered short of a major research program, which probably would not
be cost effective. I hope my remarks have illustrated the critical importance of
the Ryan White CARE Act to New York State, and that you will consider our
recommendations for a reauthorized CARE Act. I would be happy to discuss these
issues further with you or your staff Thank you for the opportunity to speak to
you today.
LOAD-DATE: March 7, 2000
