Editor’s note: This post is also co-authored by Rachel Garfield, a senior researcher and associate director at the Kaiser Commission on Medicaid and the Uninsured, the largest operating program of the Henry J. Kaiser Family Foundation.
Among the groups that stand to benefit from the Affordable Care Act (ACA) are people living with HIV, a population with significant and high-cost health care needs but one that has historically faced barriers to coverage and care. While several provisions of the ACA are of particular importance for this population, two are expected to have the most far reaching effects on coverage – the expansion of Medicaid eligibility to include most Americans with incomes up to 138 percent of the federal poverty level (FPL) (although the Supreme Court’s 2012 decision effectively made the Medicaid expansion optional for states) and the creation of new Health Insurance Marketplaces where individuals can purchase private coverage, including subsidized coverage for those with lower incomes. Others include an end to pre-existing condition exclusions, a ban on premium rate setting based on health status, and an end to annual and lifetime caps on coverage, all of which posed barriers for people with HIV prior to the ACA.
Despite the importance of these changes for people with HIV, little has been known about how many are estimated to gain new coverage. While there are more people living with HIV in the U.S. than ever before (an estimated 1.1 million), almost two-thirds are not yet in regular care, either because they have not yet been diagnosed or have not been retained in care, thus challenging efforts to develop nationally representative estimates of the population of people with HIV in the U.S. by income and coverage. Indeed, a recent Institute of Medicine study concluded that no single data source was yet available that could establish baseline estimates of coverage before 2014; instead, the Committee recommended that multiple data sources should be considered.
Examining The Population Of Americans With HIV/AIDS
Two new studies, each using different data sources, shed light on this question — our study from the Kaiser Family Foundation, conducted in collaboration with researchers at CDC, and Snider et. al’s analysis published in the March issue of Health Affairs. While the two studies use different data sources and methodological approaches, they arrive at a similar conclusion: significant shares of people with HIV stand to benefit from Medicaid expansion (as well as subsidized coverage in Health Insurance Marketplaces), but state choices about Medicaid expansion will affect the ACA’s reach for this population. As such, both studies highlight the continued importance of the Ryan White HIV/AIDS Program (Ryan White Program), first created in 1990, which has become a critical safety net for people with HIV who have no coverage or face limits in their coverage.
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