Health Insurance Coverage for People with HIV Under the Affordable Care Act: Experiences in Five States

Assuring that people living with HIV have continuous access to high quality health care, particularly antiretroviral therapy (ART), is essential for addressing the ongoing HIV epidemic in the United States. Indeed, antiretroviral therapy is not only critical for the health and longevity of people with HIV, it has also been shown to significantly reduce the risk of HIV transmission.1 However, the majority of people with HIV in the U.S. are not yet engaged in care and not on ART.2 Improving access to health coverage is one key component to addressing this gap.

The Affordable Care Act (ACA) provides new health insurance coverage opportunities for millions of individuals, including people with HIV. To provide greater insight into what the ACA has meant for this population, this report examines the experiences of people with HIV based on focus groups conducted in five states – California, Florida, Georgia, New York, and Texas – between June and September of 2014. Participants were asked to discuss their enrollment and coverage experiences in either their state’s health care marketplace or an expanded Medicaid program. Those participants who did not gain new coverage, largely because they lived in a state that did not choose to expand Medicaid, discussed that experience. In addition, all participants were asked about the role of the Ryan White HIV/AIDS Program, the nation’s safety net for people with HIV who are uninsured or underinsured.

It is important to note that because these focus groups were conducted relatively soon after coverage began, they represent the early experiences of people with HIV in these states and may not fully capture their ongoing coverage and care experiences. Ultimately, understanding the experiences of people with HIV in accessing new coverage, including successes and challenges, has important implications for both individual health outcomes and the nation’s response to the HIV epidemic.

Key findings include:

  • At the time of the focus groups, the ACA’s health insurance expansions, through health care marketplaces and Medicaid expansion, were already playing a role in the lives of many with HIV who reported gaining new coverage.
  • Those enrolling in private coverage sold on the marketplaces found that they had access to more comprehensive health services. While in the past many received HIV related care and treatment through the Ryan White Program, participants faced economic and health insecurity related to other, non-HIV, healthcare needs. Some participants found they were able to find much more affordable coverage through the marketplace compared to pre-ACA insurance costs. However, many faced barriers during enrollment and although most of these were surmountable, some became discouraged and did not enroll. A few participants enrolled in plans with very high deductibles and as a result were concerned that their out-of-pocket costs would be prohibitive. In addition, several enrolled in plans without fully understanding their coverage or knowing if their HIV doctor would be in their plan’s network or whether their HIV medications would be covered. Where focus group participants had used their new coverage, it was mostly to access HIV drugs. A smaller share of participants used their coverage more broadly and while they reported staying in care, some had to change providers, pharmacies, and switching to different non-HIV drugs.
  • Participants gaining new coverage through Medicaid expansion reported continuing to get their HIV care needs met, as they had in the past primarily through Ryan White, while also receiving care for other health problems that had previously gone untreated. These enrollees generally reported smoother coverage transitions compared to those in the marketplace. In addition, most had already used their coverage for accessing HIV care and treatment.
  • Focus group participants living in states not expanding their Medicaid programs, but who would have otherwise been eligible, continued to receive their HIV care through Ryan White but worried about how to meet other health needs. They were frustrated by their state’s decision not to expand and continued to be worried about health and economic insecurity that accompanied being uninsured.
  • They Ryan White Program was cited as a key source of care, treatment, and support for many focus group participants, including those gaining new coverage, helping to ensure a smooth transition into new forms of health insurance, helping them to afford new coverage, and supplementing coverage with needed services where gaps remained. In addition, Ryan White continues to be the main source of HIV care for those who remained uninsured.


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