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Testimony on HR. 4807 - The Ryan White Care Act Amendments
by Dr. Claude Earl Fox, Administrator, Health Resources and
Services Administration, U.S. Department of Health and Human
Before the House Commerce Subcommittee on Health and Environment
July 11, 2000
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 B
almost 13% of the U.S. population in 1998 B
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:
access to care for persons who know their status but are
not in care;
the quality of health and ancillary services delivered
by Ryan White providers; and
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
use of Ryan White funds for community-based prevention
grants for newborn testing and mandatory testing laws;
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
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 Aroutine
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:
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 Amandatory
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
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.
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