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Congressional Testimony
July 25, 2000, Tuesday
SECTION: CAPITOL HILL HEARING TESTIMONY
LENGTH: 3467 words
COMMITTEE:
HOUSE COMMERCE
SUBCOMMITTEE:
TELECOMMUNICATIONS, TRADE AND CONSUMER PROTECTION
HEADLINE: TESTIMONY HIGH DEFINITION-TELEVISION
TESTIMONY-BY: CLAUDE EARL FOX, MD , ADMINISTRATOR
AFFILIATION: HEALTH RESOURCES AND SERVICE
ADMINISTRATION
BODY:
July 11, 2000 Prepared
Statement of Dr. Claude Earl Fox Administrator Health Resources and Services
Administration Subcommittee on Health and Environment Panel 1, Witness 1
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/AlDS 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 11 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 11 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 10M,
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 11 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.
LOAD-DATE: August 25, 2000, Friday