Among the many factors affecting demand for HIV/AIDS services at CARE Act-funded sites, three in particular loom large:

• Increased longevity among many people living with HIV/AIDS requires conversion to a chronic disease treatment model and results in increased demand over the long term—both for HIV services and for services associated with the aging process.
• Changes in the health care financing environment may increase reliance on CARE Act-funded services.
• People living with HIV/AIDS now entering the health care system are more likely than ever to be poor, to be minority, and to have complex comorbidities such as substance abuse, mental health problems, and hepatitis.

The need to address these issues is reflected in a July 27, 2005, U.S. Department of Health and Human Services press release announcing the President’s five principles for reauthorization of the CARE Act: 1) serve the neediest first, 2) focus on life-saving and life-extending services, 3) increase prevention efforts, 4) increase accountability, and 5) increase flexibility.

As this report goes to press in July 2006, discussions regarding a reauthorized CARE Act are still ongoing, so it is impossible to know what the new CARE Act will look like. What is certain, however, is that legislators and policymakers are already working to address several complex challenges that will affect access to care for the underserved in the future.

A Search for Equity

Previous reauthorizations of the CARE Act have attempted to address the difficult issue of how to distribute CARE Act resources in a manner that best reflects need and demand across the Nation. This issue is still not resolved.

Reports commissioned by Congress and published in 2004 and 2006 by the Institute of Medicine (IOM) and the Government Accountability Office bring attention to the fact that CARE Act funding allocations do not equitably reflect the distribution of persons living with HIV/AIDS. The reports cite “structural features” in the legislation that create barriers to more equitable distribution of funds, such as the use of AIDS case counts rather than HIV case counts, and hold harmless requirements limiting reductions in awards to jurisdictions where AIDS prevalence is falling. The reports also note that States and Territories with Title I Eligible Metropolitan Areas (EMAs) receive higher per capita financial awards because each EMA’s AIDS prevalence is used as a component for calculating its grant, and then is used a second time when calculating the Title II grant for the State or U.S. Territory.

Ensuring equity in funding is a complex endeavor, and one that requires interventions on several fronts.

Readiness of an HIV surveillance system. Tracking HIV infections can facilitate prevention efforts, early diagnosis, and better distribution of CARE Act dollars.

All States have adopted systems for HIV surveillance in addition to AIDS case reporting. However, there is still a debate about whether HIV surveillance should be name-based, as is the case with AIDS surveillance, or whether code-based systems can yield data of sufficient quality.

More generally, the IOM’s examination of the use of HIV surveillance for allocation of CARE Act formula funds did not bring encouraging news about the readiness of a national HIV surveillance system that might be used to more equitably distribute CARE Act resources in the near future. Concerted efforts must continue to address the issues of consistency, quality, and comparability of HIV case reporting to ensure funding allocations under Titles I and II to meet the epidemic where it is.

Measuring need. The issue of funding allocations based on severe need is not new to CARE Act grantees. It was introduced in the CARE Act as reauthorized in 1996. Additional language was added in the 2000 amendments to the legislation, even though everyone involved with CARE Act implementation recognized that available quantitative tools for measuring need were not adequate. But HRSA has not stopped working to address the problem, and much progress is being made.

The Administration’s reauthorization principles call for the establishment of objective indicators to determine severity of need for funding of core medical services. It proposes that such an index take into account HIV incidence, level of poverty, and availability of resources, including local, State, and Federal programs, and private resources. The IOM report pointed to the possibility of a meaningful and scientifically sound needs-based funding formula. Taking the IOM recommendations under advisement, HRSA will continue its efforts to identify nationally available objective indicators of need that can be used to allocate limited CARE Act resources.

Counting those who count on the CARE Act. The CARE Act requires grantees, their contracted service providers, and HRSA’s HIV/AIDS Bureau to engage in quality management and evaluate the quality of services funded by the CARE Act. However, current aggregate data are limited in their ability to answer quality-of-care questions. There are two primary limitations.

First, aggregate data lack client identifiers and cannot be merged and unduplicated across service providers within a given geographic area. As a result, grantees and ultimately HRSA cannot obtain accurate counts of the number of individuals served by the CARE Act. Second, the aggregate data cannot be analyzed with any of the epidemiologic detail that is required to assess quality of care, or to sufficiently account for the use of funds. For example, basic measures—such as whether specific clinical and service outcomes differ by gender and race/ethnicity of those served—are not currently reported or obtainable from the aggregate reports.

Unless well-designed and standardized client level data collection systems are in place, and ongoing technical support is provided, clinical and support service outcomes and general agency performance cannot be adequately answered by grantees, providers, or HRSA.

There are a number of issues that HRSA would need to address in implementing client level data reporting, including assessment of grantee and service provider data systems, the costs involved, and what technical assistance grantees and their service providers will need.

Changing Programs, Growing Need

Demand for CARE Act funds has greatly increased over the past 15 years because of the increasing numbers of uninsured or underinsured people living with HIV/AIDS, cost of care, and pressure on other public programs. These realities underscore the importance of identifying which services are most essential and of using CARE Act funds to offer those services.

Medicaid and Medicare are the largest payers of HIV/AIDS care in the United States, covering an estimated 291,327 persons with HIV/AIDS in FY 2005 (including persons who were dually eligible) at a projected cost of $8.6 billion.

The modernization of Medicaid and Medicare has resulted in both added benefits—such as the prescription drug provisions under Medicare—and added flexibility afforded States to redesign certain aspects of Medicaid State plans. To the extent that persons living with HIV/AIDS can utilize these and other payer sources to meet their care and treatment needs, the primary issue for the CARE Act will be how changes in safety net programs affect barriers to enrollment, access to services, and changes to existing service delivery systems for persons living with HIV/AIDS. It remains to be seen whether, as a result of changes in Medicaid, Medicare, and other programs, growing numbers of low-income uninsured and underinsured persons with HIV/AIDS turn toward the Ryan White CARE Act as a payer of last resort, creating additional pressure on already limited resources.

There are certainties, however, as the CARE Act community moves into the last half of the third decade of AIDS in America. Among them is the unhappy reality that, without a cure or vaccine, demand is continuing to grow. This is not a new development, of course, but it is one that underscores the importance of ensuring equity in the distribution of CARE Act funds, of measuring as accurately as possible the state of the epidemic today, and of addressing other issues standing before those responding to HIV/AIDS—and before those living with it.

And there are other certainties, too, and some of them are happy ones. Many people living with HIV/AIDS in the United States are going to grow old, which, just over 10 years ago, seemed too much to hope for. Their providers are in many cases already equipped to address maladies minor and not so minor that are commonly associated with the aging process. It is equally certain that, by listening and learning, providers will continue to improve the already high quality of the services they offer. But when considering the challenges of delivering services tomorrow, it is perhaps this certainty that casts the brightest light into a sometimes uncertain future: while the need for HIV/AIDS services isn’t going away, neither is the commitment of those called to address it.