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The ACA and People with HIV: An Update

Introduction and Background

The Affordable Care Act (ACA), signed into law in 2010, aims to expand access to affordable health insurance to millions of Americans, including those with HIV, providing new coverage options, non-discrimination protections, and eliminating other barriers to care. For people with HIV, these pathways to coverage and protections have particular importance given that many faced exclusions and other discriminatory hurdles in gaining individual health insurance in the pre-ACA era. Provisions with an especially significant impact include: the creation of health insurance Marketplaces in each state where individuals can purchase private insurance with subsides available to those with low and moderate incomes; the ability for states to expand their Medicaid programs to cover individuals based on income alone1; and prohibitions on discriminatory market practices such as rate setting based on health status, preexisting condition exclusions, and use of annual and lifetime coverage limits. Improving access to and engagement with health care for those with HIV is important to both individual and public health because continuous access to quality HIV care and treatment improves the health and longevity of those who are infected and also reduces the risk of HIV transmission.2 However, despite the potential offered by the ACA, some with HIV have remained uninsured, often because they are ineligible for coverage or available options are unaffordable. Additionally, some will have HIV care needs that go beyond what is provided through traditional insurance. For these individuals, the Ryan White HIV/AIDS Program, the nation’s HIV care safety net, remains a critical resource.

In order to explore how those with HIV were impacted by initial coverage changes under the ACA, we conducted focus groups with HIV positive individuals after the close of the first open enrollment period in the Summer and Fall of 2014.3 The groups were conducted in five states –California, Florida, Georgia, New York, and Texas–which together represent half of all people estimated to be living with HIV in the United States and reflect different state level approaches to ACA implementation.4 Two of the states – California and New York – expanded their Medicaid programs while the remaining three – Florida, Georgia, and Texas – did not. In addition, California and New York run their own health insurance Marketplaces while Florida, Georgia and Texas rely on the federally-facilitated Marketplace. Within these states, focus groups were conducted in the cities of Los Angeles, Miami, Atlanta, New York City, and Dallas.

The 2014 groups occurred at a time when coverage opportunities were new and enrollees, as well as those working within health care delivery, were only just becoming familiar with navigating the systems and doing so after Marketplaces initially struggled to operate as planned. The resulting report provided a first look at how people with HIV were accessing and using new insurance and at the experiences of those who remained uninsured. As a follow-up, in February 2016, after the third open enrollment period, we returned to the same sites to conduct a second round of focus groups to see whether and how experiences with coverage had changed since the early rollout. In three states (Florida, Georgia, and Texas), focus groups included those who remained uninsured, falling below 139% of the federal poverty level (FPL). Because these states have not expanded Medicaid, many of these focus group participants were caught in the “coverage gap,” that is they lived in states that did not expand Medicaid and had incomes below 100% of the poverty level, leaving them ineligible for Medicaid and Marketplace subsides, with limited coverage options. In two states (California and New York), focus groups consisted of those who gained coverage through either the Marketplace or through their state’s Medicaid expansion. This report identifies key findings from the 2016 research and makes comparisons to the 2014 groups. It is organized around the main themes that emerged from the focus groups. (See Appendix for detailed Methodology).

Table 1. Focus Group Site Details
City Date Composition
Miami, FL February 18, 2016 Uninsured, Under 139% FPL
New York City, NY February 22, 2016 Marketplace and Medicaid Expansion Enrollees
Dallas, TX February 24, 2016 Uninsured, Under 139% FPL
Los Angeles, CA February 25, 2016 Marketplace and Medicaid Expansion Enrollees
Atlanta, GA February 29, 2016 Uninsured, Under 139% FPL
Executive Summary Findings

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Filling the need for trusted information on national health issues, the Kaiser Family Foundation is a nonprofit organization based in Menlo Park, California.