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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 Services

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:

_ 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 Aroutine 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:

AThe 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 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.

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