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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act
and related resource needs; and (3) available health outcome and other data that could be used to assess the quality of RWCA-funded services.
These questions were motivated in part by several important aspects of the HIV epidemic and the health care system. Despite national guidelines recommending early access to medical care and treatment (Yeni et al., 2002; DHHS, 2003), an estimated 42 to 59 percent of the estimated 850,000-950,000 people living with HIV/AIDS in the United States are not in regular care (Fleming et al. 2002). Approximately one-quarter of all people with HIV do not know their HIV status (Fleming et al., 2002), and many others face financial and other barriers to accessing care (Kaiser Family Foundation, 2000). The cost of HIV care, which ranges between $10,000 and $12,000 annually per person for antiretroviral medications alone (Kahn et al., 2001), presents a formidable barrier to people with HIV/AIDS, many of whom are poor, unemployed, uninsured, or underinsured (Bozzette et al., 1998; Kaiser Family Foundation, 2000). Data suggest that although the quality of HIV/AIDS care has improved over time, both access to care and its quality vary by insurance status, race/ethnicity, and sex (Bozzette et al., 1998; Shapiro et al., 1999). Furthermore, many of the programs that provide care to individuals with HIV vary substantially in their eligibility and benefits across states, resulting in uneven access to care (Kaiser Family Foundation, 2000).
Because of these factors, Congress, HRSA, and grantees have raised questions about whether the original strategies for allocating resources to those in greatest need are consistent with the current distribution of the disease across states and Eligible Metropolitan Areas (EMAs) and associated resource needs. An overarching concern was that current RWCA allocation strategies might not be as equitable as they could be because of perceived changes in the HIV epidemic. There was also a desire to facilitate efforts by HRSA to monitor and improve the quality of care supported by RWCA. Over the past decade, knowledge about how to assess and improve health care quality has dramatically improved. These developments, coupled with growing knowledge about disparities between what is possible and what is routinely achieved in many areas of care, led Congress to suggest that the Committee review current knowledge about ways of monitoring the quality of HIV care in the RWCA.
The Committee focused on strategies and measures for federal resource allocation, evaluation of grantee applications, and assessments of the quality of care. The Committee’s specific recommendations are described in Chapters 4, 5, and 6 and are summarized in Box 7-1. In brief, the key messages from this report are:
While the Committee supports Congressional intent to incorporate data into the RWCA allocation formulas that reflect the evolving