There are several challenges to assessing insurance coverage of persons with HIV/AIDS. These include difficulties in accessing the population of people with HIV/AIDS, given that a significant proportion is not in the care system and many do not know their HIV status, as well as limitations in data systems, methodological complexities, and the lack of capacity by major purchasers of care (e.g., state Medicaid programs) to perform client-level payer status analysis.

Coverage of Those in Care

The HIV Cost and Services Utilization Study (HCSUS), the only nationally representative study of people with HIV/AIDS in care, found that one-third to one-half of all people with HIV/AIDS were in regular care in 1996.19,31 More recent estimates from the Centers for Disease Control and Prevention (CDC) place this range slightly higher, between 41% and 58%.7

Most of those in care rely on public sector insurance programs or are uninsured, estimated to range between approximately 70%32 and 83%.33 HCSUS found that one-half are estimated to depend on the Medicaid (44%) or Medicare (6%) programs for coverage and one in five (20%) are uninsured32 (comparatively, among American adults overall, 6% are estimated to be covered by Medicaid, 2% by Medicare, and 19% are uninsured).34 Almost one-third have private insurance, a much smaller percentage than the U.S. adult population overall (31% of people with HIV compared to 73% of American adults overall).34 (See Figure D-2.) It is important to note that people with HIV/AIDS in care who are uninsured may be receiving care from Ryan White CARE Act programs or other safety net providers.

Many people with HIV/AIDS obtain their financing for care through multiple sources. For example, approximately 15% of those with Medicaid coverage also have other sources of coverage, primarily Medicare. About 12–13% of people with HIV/AIDS in care are estimated to be dual Medicaid and Medicare beneficiaries (called “dual eligibles” or “dual enrollees”).19,32,35 Viewed this way, Medicare covers approximately 19% of people with HIV/AIDS in care, including those also covered by Medicaid (6% with Medicare only and 12–13% with both Medicare and Medicaid).

More recent data on insurance coverage of people with HIV/AIDS in care are available from the HIV Research Network (HIVRN), a collaborative effort between the Agency for Healthcare Research and Quality (AHRQ), several other federal agencies, and the Johns Hopkins School of Medicine.36 While not national in scope, the HIVRN includes data from 1999 for 15 medical practices around the country, representing approximately 9,500 patients. Insurance coverage data were available for 42% of

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