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Federal Document Clearing House
Congressional Testimony
July 25, 2000, Tuesday
SECTION: CAPITOL HILL HEARING TESTIMONY
LENGTH: 4787 words
COMMITTEE:
HOUSE COMMERCE
SUBCOMMITTEE:
TELECOMMUNICATIONS, TRADE AND CONSUMER PROTECTION
HEADLINE: TESTIMONY HIGH DEFINITION-TELEVISION
TESTIMONY-BY: GUTHRIE S. BIRKHARD MD, MPH , DIRECTOR,
AIDS INSTITUTE
AFFILIATION: NEW YORK STATE DEPARTMENT
OF HEALTH
BODY:
July 11, 2000 Prepared Statement of
Dr. Guthrie S. Birkhead Director, AIDS Institute New York State Department of
Health Panel 2, Witness 4 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. 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
HIV/AIDS in New York. Let me begin by telling you a little about the HIV
epidemic in New York State. Approximately 141,000 AIDS cases have been reported
in New York State and approximately 56,000 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 about 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 56,000 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 over the next 1-2 years. 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 HIVAIDS 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 HIV care
networks throughout the State. The care networks are local groups of providers
in 16 geographic areas 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 White CARE Act.
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 11 along with an appropriation of state funds. In addition, the Department
of Health has formed unique partnerships with the Title I Eligible Metropolitan
Areas (EMAs) 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 53,000 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 June 2000, 10,900 were served -- an
increase of about 137 percent in a little over three years. More dramatic is the
increase in monthly expenditures. Expenditures for the month of January 1996
were $2.2 million. By June 2000, monthly expenditures were $12.1 million -- an
increase of 450 percent. This is due to the expense of the combination HIV
therapies, which may run $12,000 to $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 first quarter of 20009 80 percent of
ADAP participants were using three or more antiretroviral drugs
in combination, while another 1 1 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 Ryan White 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 HIV medications is particularly critical because HIV
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 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 HIVAIDS
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 1999,, there has been a decline in
HIVAIDS deaths of more than 77 percent. And effective therapy will prevent the
development of antiretroviral 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 HIVAIDS. I would like to
discuss the proposed Ryan White bills and our recommendations for the
reauthorization of the CARE Act that will enhance our ability to serve persons
with HIVAIDS. (1) First, we thank Congress for maintaining the existing Title.
structure of the CARE Act, with ADAP supplemental funds as a
component of Title 11 funding to states. Changing the structure of the Act could
have resulted in harmful disruptions in services. (2)Second, we support the
House bill provision that revises the Title I and base Title 11 funding formula
from one based on AIDS cases to one based on HIV cases toward the end of the
reauthorization period. While it will take states like New York who are just now
embarking on HIV reporting some time to get their systems fully operational and
producing quality data, we believe that continuing to base the allocation of
funds on AIDS cases could be detrimental to states that have been successful in
making treatments available to persons with HIV, as fewer of them progress to
AIDS. An essential component of the formula, though, is the hold harmless
provision. The CARE Act should establish hold harmless provisions for Title I
and Title 11 that will avert drastic reductions in awards and disruptions in
services. The House bill's hold harmless provisions could lead to a 25%
reduction in awards to states and cities in the fifth year of the
reauthorization period. We support the hold harmless provisions in the Senate
bill, which call for reductions of no more than two percent per year. (3)Third,
we support the House provision that adds a supplemental component to Title 11 if
the increase in Title 11 base funds is at least $20 million over the FY 2000
amount. This supplemental component of Title 11 will support competitive grants
to states that have communities with severe need. The Senate bill's provision
related to a supplemental component of Title 11 does not include competitive
awards. Rather, it creates more "Title I- like" awards. We believe the House
bill would be more effective in addressing priority unmet needs in all non-Title
I areas. (4)We support grants for counseling & testing and treatment of
pregnant women and infants. In New York State, our newborn testing program has
provided valuable information to track perinatal HIV transmission and to assist
in getting HIV-exposed newborns into health care. HIV testing in the newborn
setting may permit treatment to prevent perinatal transmission for women not
tested during prenatal care. We understand that this funding will not be at the
expense of other Title 11 programs. (5)Because the number of people living with
HIV continues to increase we recommend expanded authorized funding levels for
all Titles of the Act. (6)We recommend further that the reauthorized CARE Act
allow ADAP supplemental funds to be used specifically for
medical monitoring, laboratory testing, and medications adherence support -- all
of which are key components of HIV treatment -- as well as for health insurance
continuation. The House bill allows for the use of ADAP funds
for continuation of health insurance, but does not address medical monitoring,
lab testing and adherence support. (7)Getting people tested for HIV and into
care as quickly as possible is important for successful HIV treatment.
Therefore, we support the House bill provision related to the use of CARE Act
funding for early intervention services, which allows for the use of Title I and
Title II funds to support early intervention services in a variety of settings.
In addition, the House bill allows for the use of funds for outreach for
purposes of identifying individuals with HIV who are not receiving services. We
thank the House for its vision in this area. However, we question the
elimination of the provision allowing for early intervention activities in any
entity receiving Title 11 funds. Previous versions of the House bill included
this important language, but it was removed from the bill that was finally
introduced. Often, the providers best able to reach underserved, minority
populations are community-based organizations that might not meet the
definitions established in the legislation. We strongly encourage the
restoration of the language that will enable all funded entities to carry out
early intervention activities. (8)The House bill requires that we allocate an
"appropriate" amount of funds to support identifying individuals not utilizing
services and encouraging them to do so. Do not mandate in legislation that we
allocate a specific portion of our Title 11 grant for certain types of
activities. It is essential that we have flexibility in administering our Title
11 programs to ensure that local needs are addressed. (9)Previous versions of
the House bill allowed for the use of Title 11 funds for surveillance
activities. We supported this provision. The bill that was introduced, however,
eliminates this provision. We support the use of Title 11 funds for
surveillance, perhaps with a cap and language requiring that funds supplement
rather than supplant existing funding or such activities. (10)The House bill
calls for additional participatory planning processes with regard to the Title
11 application. We do not support this provision. Existing requirements related
to participatory planning are more than sufficient. For example, we are required
to conduct public hearings on our application, we are required to involve all
titles and consumers in the statewide coordinated statement of need, our Title
11 consortia participate in planning, and we are required to coordinate
activities with other programs and agencies. (1 1) 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. (12)We do not
support a legislative mandate that support services must be related to health
care. Both the House and Senate bills require support services to facilitate,
sustain or enhance health care. Some support services enhance quality of life,
and some affected populations, like women and children, require support services
that might not be directly linked to care, such as permanency planning and legal
services that assist families affected by HIV. (13)We support the House language
calling for preferences related to Title III awards supported by newly
appropriated funds. The House language allows for preference to be given to
underserved or rural areas, while the Senate language allows for preference for
rural areas only. 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: August 25, 2000, Friday
