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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