The ACA and People with HIV: Profiles from the Field

Key Findings

While the experiences of each of the twelve individuals profiled in this report are unique, several key themes related to their health care and coverage in the ACA era emerge:

  • First, the Ryan White HIV/AIDS Program is a linchpin in their lives, without which many feel their HIV care would be compromised. Most of those profiled had been uninsured for years before the ACA and were only able to get their HIV care through Ryan White, including accessing medications through its AIDS Drug Assistance Program. Today, for those in states that have not expanded Medicaid, Ryan White remains their primary vehicle for accessing HIV care and treatment. Ryan White also continues to support many who gained new coverage under the ACA, including by providing premium support to make insurance more affordable for those in private marketplace plans, through the provision of wrap-around services such as case management, and by offering assistance during gaps in coverage. Almost all talked about the critical role Ryan White plays in their HIV care.
  • Second, among those who were able to get new coverage, either through Medicaid or in the marketplace, most said they were satisfied with their insurance but many faced enrollment or reenrollment/recertification challenges and delays. In some cases, these challenges caused individuals to fall temporarily out of care. In addition, some individuals had trouble selecting a plan that met their needs and chose coverage without fully understanding benefit designs- for instance not knowing whether a provider was in network. One individual chose a bronze plan because of the low premium but knew that he would not be able to use it unless he had an emergency because of the very high deductible.
  • Third, knowledge of ACA coverage increased over time and systems got better. Several of those profiled reported improved experiences in the second open enrollment period compared with the first. A few individuals changed plans, finding new coverage that would work better for them and a couple of those profiled gained Ryan White premium support that they had not had in the past, making coverage more affordable.
  • Finally, those with new coverage reported a tremendous sense of relief and feeling much more secure. In particular, some of the people profiled have complex and serious, non-HIV health complications and were able to meet these needs with either Medicaid or private coverage under the ACA, including getting physical therapy and pain management for a back injury and receiving mental health and substance use services. Conversely, those profiled who did not gain coverage, largely because they lived in non-expansion states and fell into the coverage gap, were left without coverage options under the ACA. While they were still able to meet their HIV care needs through the Ryan White Program, they were unable to address other health problems, which in some cases were very significant, including cancer and heart disease, issues that could potentially impact their HIV disease.  

The below table details the state and insurance coverage status (marketplace enrollee, Medicaid expansion enrollee, or uninsured) of the twelve individuals profiled in this report.

Table 1: Participant Profiles
Respondent State Coverage Status
Valentine NY Marketplace Enrollee
Jorge FL Marketplace Enrollee
Eric CA Marketplace Enrollee
Maria GA Marketplace Enrollee
Al TX Marketplace Enrollee
John TX Marketplace Enrollee
Patrick (CA) CA Medicaid Expansion Enrollee
Patrick (NY) NY Medicaid Expansion Enrollee
Nick NY Medicaid Expansion Enrollee
Zena FL Uninsured
Shandora GA Uninsured
Darin TX Uninsured
Introduction Background

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