Copyright 2000 Federal News Service, Inc.
Federal News Service
July 11, 2000, Tuesday
SECTION: PREPARED TESTIMONY
LENGTH: 2037 words
HEADLINE:
PREPARED TESTIMONY OF DR. CLAUDE EARL FOX ADMINISTRATOR HEALTH RESOURCES AND
SERVICES ADMINISTRATION
BEFORE THE HOUSE
COMMERCE COMMITTEE SUBCOMMITTEE ON HEALTH & ENVIRONMENT
SUBJECT - H.R. 4807, THE RYAN WHITE CARE ACT AMENDMENTS OF 2000
BODY:
Introduction
Good morning,
Chairman Bilirakis and Congressman Brown and distinguished members of the
Committee, thank you for inviting me to discuss H.R. 4807 - "the Ryan White CARE
Act Amendments". It is my pleasure to be here today. As you know, the Ryan White
- CARE Act has played an important role since its enactment in 1990 in providing
health care to hundreds of thousands of individuals living with
HIV/AIDS in the United States.
I also want to thank you, Chairman
Bilirakis, for convening this hearing today on this important piece of
legislation, and I want to express our gratitude to Congressmen Coburn and
Waxman and others for their leadership on this very important bill.
The
Ryan White CARE Act is more important now than ever. The HIV/AIDS epidemic is
much more complex in 2000 than it was in 1990. The volume of cases has increased
and the affected population has changed. We estimate that between 800,000 and
900,000 Americans are now living with HIV/AIDS. Of these cases, about a third of
the individuals have been diagnosed and are in care; another third have been
diagnosed but may not be receiving ongoing care for their HIV disease; and the
final third have not been diagnosed and, therefore, are not in care. We must
continue to make available quality primary health care and
services needed to adhere to difficult treatment regimens if we are to continue
our progress against this relentless disease. While our prevention efforts are
geared towards reducing new infections, those living with the disease must be
able to access care and services that have proven to be life-saving and
cost-effective. To ensure this, the reauthorization of the Ryan White CARE Act
is one of the Administration's top legislative priorities. The Administration is
very committed to carrying on the tradition of care and treatment of individuals
with HIV/AIDS through the continuation of this program. We look forward to
working with your subcommittee as the bill moves through the House.
This
morning, I would like to offer you an overview of the HIV/AIDS epidemic in the
United States, and highlight the importance of the CARE Act in providing
treatment and services to individuals living with HIV/AIDS.
Overview of
Epidemic
The HIV/AIDS epidemic has taken a heavy toll in the United
States since it was first identified in 1981. Over 733,000 Americans have been
reported to have AIDS, and more than 430,000 men, women and children have lost
their lives to the disease. The total number of Americans with HIV infection is
not available; however, that number is expected to be greater than the current
number of individuals diagnosed with AIDS. Though it began as a disease of gay
white males, African - Americans and Hispanics now have AIDS infection rates
several times higher than that of whites.
In 1998, white Americans were
about 72% of the total U.S. population, but represented just 34% of newly
reported AIDS cases. African Americans - almost 13% of the U.S. population in
1998 - were 45% of new AIDS cases that year. New AIDS cases among Hispanics, who
were just over 11% of the population in 1998, accounted for 20% of the U.S.
total that year.
Women represented 23% of all new AIDS cases in 1998;
60% of these newly infected women were African American, 20% Hispanic. Two of
every three women living with HIV are believed to be mothers of at least one
minor child. These women are, on average, poorer than HIV-positive men and are
more likely to be unemployed and more poorly educated than their male
counterparts.
Youth are increasingly at-risk for HIV infection. About a
quarter of all people now living with HIV were infected as teenagers. As many as
half of all new HIV infections occur in people under the age of 25, and a
quarter of these new infections occur in youth under age 22.
Administration Comments on HR 4807
The Administration supports
the efforts made in developing legislation that addresses the many complex
issues in delivering services to low- income, uninsured, and
underinsured persons with HIV/AIDS. We believe that many provisions in the bill
improve upon the existing Ryan White CARE Act and offer expanded opportunities
to develop new ways of ensuring access to life-saving, quality HIV
health care services. The bill authorizes communities to reduce
the number of new infections and improve the health and
well-being of all Americans impacted by this disease, regardless of race,
gender, income, geographic location, and availability of health
insurance coverage. Many of the changes in the bill address concerns raised by
the House minority caucuses.
Overall, the House bill refines the focus
of the Ryan White CARE Act by: improving access to care for persons who know
their status but are not in care; improving the quality of
health and ancillary services delivered by Ryan White
providers; and increasing accountability of federal funds.
The
Administration supports efforts in H.R. 4807 to improve access to HIV care
services.
The legislation establishes an important precedent in the use
of epidemiological data and evaluation studies to improve the understanding of
HIV's impact in local communities. It also allows grantees to assess the demands
for services for persons not in the care system and establishes comprehensive
planning strategies to address their complex medical and social service needs.
H.R. 4807 also recognizes the importance of early intervention services -- such
as testing, counseling, and referrals -- as a means to identify, educate, and
provide services to persons currently outside of the health
care system.
Through the establishment of new Title II supplemental
awards and a new Title III capacity grant program, H.R. 4807 authorizes federal
resources in rural and historically underserved communities in an effort to
resolve inequities in the capacity and infrastructure of critical HIV-related
services. Furthermore, a new partner notification program provides additional
resources to public health agencies currently conducting
partner nonfiction programs. These efforts, building on the current CARE Act,
will significantly improve access to important health services
for low-income, underinsured, and uninsured persons with HIV.
Quality improvement activities help ensure access to appropriate
health care services. Ryan White providers should also assess
the effectiveness of their programs in delivering care to all persons with HIV.
This bill provides direction in establishing quality programs and allows
additional resources to be used to meet this challenge.
In addition, the
bill expands the authority of the program to develop and implement new medical
consultation activities to ensure timely and appropriate dissemination of HIV
clinical practice standards.
The Administration has been active in
making sure grantees receive ample training and technical assistance to improve
their ability to account for federal funds. The Administration supports the
audit requirements included in H.R. 4807. Additionally, the bill establishes an
appropriate relationship between social and health services to
give all clients adequate access to the benefits of medical care. It authorizes
funds for the Centers of Disease Control and Prevention (CDC) to work with State
health departments in establishing surveillance and evaluation
systems to monitor program goals. Overall, these provisions make effective use
of federal, state, and local investments for providing essential HIV services in
the most cost- effective and appropriate manner.
While the
Administration supports the provisions I just discussed, we have concerns with
the following key issues: the use of Ryan White funds for community-based
prevention programs; State grants for newborn testing and mandatory testing
laws; and extensive additional administrative requirements.
The proposed
expansion of Ryan White CARE Act funds to include broad community-based
prevention activities duplicates existing programs and may comprise existing
prevention efforts. Activities such as case finding, surveillance, social
marketing campaigns, and partner notification programs -- have been funded and
administered by the CDC. Among Federal agencies, the CDC has the greatest
knowledge of the administrative and fiscal requirements needed to manage
community- based prevention activities. HRSA's HIV/AIDS Bureau, which
administers the Ryan White CARE Act, has neither the expertise nor the
administrative capacity to oversee the appropriate use of prevention activities
in communities. Allowing CARE Act funds in Titles I and II to support
community-based prevention planning and resource allocation would realign the
CARE Act's fundamental purpose. This realignment could result in an increasingly
disorganized prevention system, with few checks and balances to ensure
compliance with established guidelines, procedures, or monitoring activities. It
may also redirect resources away from valuable Ryan White Care and treatment
activities.
The Administration sets a high priority on activities that
reduce the transmission of HIV from mother to child. Since publication of the
ACTG 076 findings in 1994, a concerted national effort has brought the benefits
of HIV testing and appropriate treatment to as many women and children as
possible. As reported to the CDC, the numbers of pediatric AIDS cases peaked in
1992 at 947 cases. By 1998, the number had declined by over 70% to just 228
cases.
Last year the National Academy of Sciences/Institute of Medicine
(IOM) released its study on preventing perinatal transmission in the United
States. One of the study's recommendations urged the adoption of a national
policy of universal HIV testing. As part of this policy, the IOM supported HIV
screening as "routine with notification" and the right of refusal; the education
of prenatal care providers; improved provider practices; performance measures
and contract language to ensure available health services;
improving coordination of care with HIV providers; and increasing utilization of
prenatal services. The IOM, however, did not support mandatory testing laws.
Instead, they warned that:
"The logic of this approach is unclear;
newborn testing may confer benefits for HIV-infected newborns, but cannot
prevent perinatal transmission. If the national goal is to prevent HIV
transmission from mothers to children, the federal government should support,
not undermine, prenatal testing and other State-based prevention efforts. The
Ryan White CARE Act Amendments of 1996, paradoxically, could have the opposite
effect."
The Administration supports continued funding for Section 2625
to provide grants to States for State-based prevention efforts directed at
reducing transmission and to providing health services to those
who are infected. But funding should not be dependent on a State's enactment of
"mandatory testing" laws or as a condition of the Ryan White grant award. This
most important issue must be met with sound policy and a long-term commitment.
The inclusion of staffing requirements is prescriptive. Funding and
staffing levels for program management activities are appropriately set through
the Executive Branch budget formulation and Congressional appropriation
processes. The Administration does not support the use of Congressional statute
to supplant this decision-making process.
Other requirements included in
H.R. 4807 create an unprecedented administrative burden. Although the
Administration supports the concept of establishing supplemental grant programs
within the existing Title II base and ADAP programs, administrative requirements
in the legislation establish a separate and burdensome process for HRSA's
HIV/AIDS Bureau and for State health department officials.
State agencies currently submit extensive information for annual awards. The
Administration supports a streamlined process that allows for the allocation of
resources based on standardized measures and a minimal application process based
on currently available State data.
Once again, we welcome the
opportunity to work with you as H.R. 4807 moves forward. I thank you for holding
this hearing, and I am happy to answer any questions.
END
LOAD-DATE: July 14, 2000