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.

Our analysis used data from the Medical Monitoring Project (MMP), CDC’s supplemental HIV surveillance system designed to produce nationally representative estimates of HIV-infected adults receiving medical care in the U.S.  The IOM recommended that the MMP, with enhancements, could be used going forward as the main data source for monitoring health coverage, access, and quality for people with HIV.  We looked at the potential impact of Medicaid expansion as well as the creation of new Marketplaces.  Overall, we found that, of the close to 407,000 adults (aged 19-64 years) with HIV receiving medical care, nearly 70,000 were uninsured, almost all of whom had incomes below 400 percent FPL; a majority had incomes below 138 percent FPL.  We also found that the Ryan White Program played an important role for people with HIV in care (40 percent of people in care received some assistance from the program), especially among those who were uninsured.

Based on this insurance and income profile, we estimate that about 47,000 currently uninsured adults with HIV in care would be eligible for Medicaid if all states expanded, and almost 23,000 would be eligible for Marketplace coverage, most of whom would also get subsidies.  But because only 26 states (including the District of Columbia) plan to expand Medicaid at this time, we further estimate that the number eligible for Medicaid would drop by 43 percent.  As a result of state decisions not to expand Medicaid, many would find themselves in a new “coverage gap” — not eligible for Medicaid in their state, but too poor to qualify for subsidies in the Marketplace.  While the Ryan White Program will likely continue to be important to people with HIV who gain new coverage (or already have coverage), it will be especially important for this group.

Snider et. al use the National Health Interview Survey (NHIS) to estimate the share of all adults with HIV (not just those in care) in the U.S., by using a question which asks respondents to identify whether they are HIV positive or at high risk for HIV.  This approach is an important potential use of the NHIS which should be explored and further validated.  Snider et. al look specifically at the Medicaid expansion provision and find that overall, nearly 115,000 uninsured people living with HIV (both those in and not in care) would be eligible for Medicaid if all states chose to expand, but about 60,000 live in states that are not planning to expand.  Despite methodological differences, our estimates based on MMP, if extrapolated to apply to the whole population of adults living with HIV (not just those in care) are similar.

Policy Implications And The Road Ahead

Taken together, these two analyses provide new information on the role the ACA could play for people with HIV and point to challenges ahead, particularly related to state choices around Medicaid expansion.  As Snider et. al state, multiple studies show the importance of insurance coverage for continuity of HIV care and receipt of antiretroviral therapy, so the extent to which Medicaid is expanded can be expected to have a meaningful impact on the health of people with HIV.

While state decisions about Medicaid expansion are not just an issue for people living with HIV (KFF has analyzed this coverage gap across the nation), there may be unique implications for this population because of the critical importance of maintaining continuity of HIV care and promoting access to care and treatment.  Indeed, a recent breakthrough study has found that antiretroviral treatment not only prolongs the lives of people living with HIV, it can significantly help to reduce the risk of HIV transmission to those who are negative by suppressing the virus.  Because of these powerful findings, Department of Health and Human Services national HIV treatment guidelines now recommend antiretroviral treatment for all people who are HIV positive and the White House recently issued an Executive Order designed to address the need to increase the number on treatment and thus virally suppressed.

At the same time, insurance coverage alone does not necessarily guarantee access, nor will it address other challenges within the health care system for people with HIV.  These include issues related to the quality of care, access to experienced HIV providers, and whether costs, such as for HIV medications in the Marketplace will continue to present barriers, even with subsidies.  In addition, as these two studies highlight, the Ryan White Program will continue to be important in both serving as the ‘payer of last resort’ for people living with HIV who are not able to obtain insurance despite the ACA, as well as for those who still face limits in their coverage.  It will also continue to provide much needed supportive services to help people living with HIV to engage in care and achieve viral suppression.

Despite these ongoing issues, coverage expansions under the ACA are an important first step in linking more people with HIV to regular care and helping them access and afford care and treatment. Going forward, it will be all the more critical to monitor how these changes in insurance coverage affect their lives.