LGBT and People Living with HIV Need To Take Charge in Healthcare Debate

Access to health care under ACA has brought huge benefits to those at risk of and living with HIV

The 2010 Patient Protection and Affordable Care Act (ACA) has resulted in 20 million Americans gaining access to health insurance who were previously unable to obtain it because they either could not afford it or were denied coverage due to a preexisting condition. This has significantly benefited all Americans. The rate of uninsurance among White Americans, for example, was nearly cut in half, from 12 percent in 2013, when key provisions of the ACA kicked in, down to 7 percent in 2015. But people living with HIV (PLWH) have benefitted in particular ways from the ACA, as have those who belong to traditionally underinsured populations that are disproportionately burdened by HIV and other health disparities: Black people and lesbian, gay, bisexual, and transgender (LGBT) people.

Regular readers of Plus are  probably already familiar with the disproportionate burden of HIV on Black Americans, who comprise about half of new HIV infections each year in the U.S., about four times their share of the population. Unfortunately, Black people experience a wide array of other health disparities as well. The Centers for Disease Control and Prevention (CDC) have found that Black people who died from HIV, stroke, perinatal diseases, homicide and diabetes had substantially more years of potential life lost than White people who died of the same causes. Black people experience higher prevalence of certain cancers and higher rates of hypertension than their White counterparts. In 2015, the CDC found that the average Black American male lived five years less than the average White American male. These shocking and shameful health and life expectancy disparities are in large part due to lower rates of health insurance (19 percent of Blacks were uninsured in 2013 compared to 12 percent of Whites) and lower access to health care among Black people compared to White people.

LGBT people also experience a wide array of disparities in health outcomes compared to their heterosexual peers. For example, gay and bisexual men represent two-thirds of new HIV infections in the United States, with Black and Latino men who have sex with men experiencing the highest HIV burden among all sub-populations. Lesbian and bisexual women are less likely to receive preventive cancer screenings, and have higher rates of obesity. Transgender people, especially transgender women of color, are disproportionately burdened by high rates of HIV and other STIs, in addition to high rates of victimization and mental health issues, including suicidality.

Prior to the ACA, people living with HIV (PLWH) were often denied insurance coverage for having a preexisting condition. If they were able to gain access to health insurance coverage, they were often met with high premiums or prohibitive annual or lifetime spending caps. Many PLWH were often unable to qualify for Medicaid despite being low-income because they were not also pregnant or disabled.

There were several key provisions of the ACA that helped to expand access to health insurance for PLWH. First, the ACA required insurance providers to cover anyone who applies at comparable rates, regardless of preexisting conditions, including HIV. The ACA also put an end to lifetime or annual spending caps for insurance coverage, which is especially helpful for those with chronic preexisting health conditions like HIV, which require consistent medical treatment throughout an individual’s lifetime.

The ACA also expanded coverage of PLWH by expanding eligibility criteria for Medicaid, which is a health insurance program for low-income children, pregnant women, parents, seniors, and people with disabilities. States currently have the option to expand Medicaid eligibility so that individuals earning up to 138 percent of the federal poverty level (FPL) qualify for Medicaid health insurance based on income alone. Prior to the ACA, an individual had to be extremely poor and also either have dependent children or be disabled to qualify for Medicaid. For PLWH, being disabled meant having an AIDS diagnosis. This created a “Catch-22” situation for many PLWH who were advised to start treatment as soon as possible to prevent onset of AIDS, but who also could not qualify for Medicaid to help cover the drugs until they had an AIDS diagnosis. This disproportionately affects Black Americans living with HIV, who are overrepresented in states where Medicaid eligibility has not expanded. This includes nearly all of the Southern states.

As a result of the ACA, insurance coverage for PLWH, Black people, and LGBT people all rose. The CDC and the Kaiser Family Foundation estimated that the percentage of PLWH who lacked any kind of health insurance coverage was 22 percent in 2012 and dropped to 15 percent in 2014, following implementation of key elements of health care reform. The percentage of PLWH on Medicaid increased from 36 percent in 2012 to 42 percent in 2014.

The Kaiser Family Foundation estimated that among Black individuals, the uninsurance rate declined from 19 percent in 2013 to 11 percent in 2015. While there is no direct evidence yet of the ACA’s impact on HIV mortality, there have been studies that have shown the impact of Medicaid expansion on HIV-related deaths. One study from the New England Journal of Medicine found that in three states that expanded Medicaid prior to the ACA, mortality declined by 20 deaths per 100,000 people as a result of expanded insurance coverage, and 20 percent of that decline was from a reduction in HIV-related deaths.

Between mid-2013 and early 2015, the percentage of LGB adults without health insurance decreased from 22 percent to 11 percent, which is a larger decrease than in the non-LGB adult population. These are all huge accomplishments that should help reduce disparities affecting Black Americans, PLWH, and/or LGBT people.

The ACA has dramatically expanded health insurance coverage and access to health care for vulnerable populations in the U.S. Key provisions of the ACA, including eliminating the ban on preexisting condition discrimination and lifetime spending caps, as well as expanding Medicaid eligibility all helped to increase access to health insurance coverage for these vulnerable populations. In order to reduce and eliminate the health disparities experienced by PLWH, LGBT people, and Black people, it is critical that these provisions remain intact as the federal government revises our national health care policies.

Tim Wang, MPH, is LGBT Health Policy Analyst for The Fenway Institute at Fenway Health. Sean Cahill, PhD, is Director of Health Policy Research for The Fenway Institute at Fenway Health. They are co-authors of the recently published policy brief, Essential Elements of a Revised National Health Care Policy for LGBT People and People Living with HIV. 

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