Understanding the Ryan White CARE Act

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, last reauthorized in 2000, is currently set to expire in September 2005. Nearly 50 percent of the Academy's members receive Ryan White CARE Act funding. We need your input on how we can advocate for enacting the best possible CARE Act in 2005. Congressional debates on reauthorization will directly affect the quality of care we are able to deliver to our patients with HIV disease.

Background of the CARE Act

The CARE Act makes funds available to cities and states to provide health care and supportive services to uninsured and underinsured individuals living with HIV/AIDS in the United States. First passed in 1990, the Act was reauthorized in 1996 and again in 2000, and it is currently set to expire September 30, 2005. Appropriations for the CARE Act topped $2 billion in fiscal year 2004, with nearly $750 million of that going directly to the AIDS Drug Assistance Program (ADAP). The Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services administers the program.

Nearly all of that $2 billion is funneled through the following four major channels (with FY'04 totals):

• Title I: Cites. Those cities (eligible metropolitan areas, or EMAs) that are disproportionately affected by HIV/AIDS receive funding largely based on formula grants based on the estimated number of persons living with AIDS ($615 million).

• Title II: States and Territories. All states and territories receive funding through Title II, again based on formulas. ADAP, which funds medications, is supported by earmarked funds within Title II ($1.086 billion, with $749 million for ADAP).

• Title III: Early Intervention. Title III provides early intervention grants to entities already providing primary care to low-income and medically underserved people at risk for HIV. These grants are awarded to community health centers, homeless programs, local health departments and other entities to perform HIV testing, risk reduction counseling, case management, outreach, nutritional and mental health services, and clinical care ($197 million).

• Title IV: Women, Infants, and Children. Services specifically for women, infants, children, youths, and their families are funded under Title IV. These services include medical care, psychosocial services, logistical support, outreach, and case management ($73 million).

In addition to titled programs, several Ryan White CARE Act programs for training and innovation are funded outside of the four major titles:

• Special Projects of National Significance (SPNS) funds programs with innovative models of HIV/AIDS care, particularly programs that work with hard-to-reach populations.

• The AIDS Dental Reimbursement (ADR) program reimburses dental schools for their treatment of AIDS patients.

• The AIDS Education and Training Centers (AETC) program supports a network of regional centers and affiliated sites that focus on training clinicians in primary care, with emphasis on interactive, hands-on training and clinical consultation to assist providers with complex issues related to therapy. Clinicians trained by AETCs have been shown to be more competent regarding HIV issues and more willing to treat persons living with HIV than are other primary care providers ($35 million).

As We Approach Reauthorization

Measuring Quality of Care

With the last reauthorization in 2000, Congress requested some outside evaluations of the CARE Act to help inform its approach to potential alterations in the act in 2005. To fulfill that mandate, the Institutes of Medicine (IOM) released the first of two reports last November. The first report, "Measuring What Matters: Allocation, Planning and Quality Assessment for the Ryan White CARE Act," set some basic recommendations for measuring the quality of care under Ryan White. In this report, the IOM recommended:

• Adopting Quality Measures. The HRSA should adopt quality measures that are comprehensive regarding

  • Populations (those diagnosed and in care; those diagnosed, but not yet in care; and those in care)

  • Level of assessment (provider and population levels)

  • Types of measures (structure, process, and outcome)

  • Spectrum of services (clinical and supportive services)

• Improving Infrastructure Development. The federal government should provide additional monies for improving development of infrastructure

• Promoting Greater Collaboration. The federal government should promote greater collaboration between public health departments and public- and private-sector providers in order to establish tools and methods to assess systems of care and quality

A second, more comprehensive report is expected from the IOM in late April 2004, titled "Ryan White CARE Act: Data for Resource Allocation, Planning, and Evaluation."

Themes for Debate: We Need Your Input

Certain themes have already emerged in discussions among federal advocacy groups, Congress, and the Bush administration regarding what we might expect in Congressional debate. Advocates are pre-paring to see some discussion regarding:

• The review of certain social services

• The definition of "quality of care"

• Amendment language unrelated to HIV treatment and care addressing such issues as mandatory HIV testing and increased funding for abstinence

• Funding to support the CDC's new prevention initiative

• Drug pricing

Many HIV medical providers are voicing their opinions on how the CARE Act should be improved. In February, HIV care providers concerned about Ryan White reauthorization met at the 11th Conference on Retroviruses and Opportunistic Infections in San Francisco to discuss these and other issues. Concern for the potential effects of the CARE Act renewal on the quality of HIV care has inspired many providers to share their thoughts. Now we must translate that into action.

The American Academy of HIV Medicine is working hard to advocate for the best CARE Act possible in 2005. We need your input on how we should proceed. To voice your opinion, or to volunteer for the ad hoc Ryan White Reauthorization Subcommittee, please contact the AAHIVM Federal Policy Analyst, Greg Smiley, at advocacy@aahivm.org.

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