For millions of Americans, the Affordable Care Act (ACA) has been the tank that knocked down many walls blocking access to health care. For many people in the transgender community, it has meant coming one step closer to achieving the life that their hearts and minds have desired for decades.
Teo Drake, a 50-year-old transgender man in Western Massachusetts, has greatly benefited from Medicaid expansion. "Medicaid expansion has definitely helped a great deal. There was more help with copays. There was a time when I was covered by my partner's insurance and my copays for my medications were under $400 a month. And there were times it was impossible to come up with that kind of money." Teo says he frequently lamented the financial burden. "I would often find myself in the Medicaid gap. That would cause all kinds of problems."
Being HIV positive and trans means that Teo needs select medications to keep his viral load low while helping with his transition. Some of the meds, such as testosterone, help with both. "Testosterone can be used in HIV, so it wasn't purely seen as a transitional drug. That's a big one for trans men that often gets denied."
Teo has been fortunate since transitioning 15 years ago. But others across the country remain locked out of the transition and HIV care they need because of stigma. Now, a campaign designed with trans people in mind is working to break down more barriers.
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On the heels of the Trump administration's announcement that it will rewrite the regulations barring health care discrimination based on gender identity, the Transgender Law Center's Positively Trans Project has launched the #ACApositive campaign. The campaign is an awareness drive aimed at spotlighting the perils of transgender people with HIV disconnecting from ACA health care coverage. The campaign uses the voices of transgender men and women sharing their experiences with health care.
"This is the first time that trans people with HIV are coming together to organize and really tell their stories about why it's important to protect the Affordable Care Act. And also, for those who are living in states that have not expanded Medicaid, [the campaign seeks] to really put some pressure on those states to expand," says Cecilia Chung, senior director of strategic projects at Transgender Law Center and founder of Positively Trans. "The goal of the campaign is to bring awareness about the importance of the Affordable Care Act, in particular section 1557 [preventing discrimination]. It really helped save lives, especially transgender people with HIV. Hopefully it will start a broader conversation about HIV."
Kiara St. James, executive director of New York Transgender Advocacy Group (NYTAG) and a Positively Trans National Advisory Board member, says that #ACApositive uplifts the voices of the trans community and helps push the conversation further along on their behalf:
If you don't know a community, you tend to put them in a box like "those people do this" and "those people do that." We want to make sure that our issues are always prioritized, and in order to do so, we have to make sure that we are at the table to get it right. Too often, people have visions of community that are not what we would want.
Reversal of Fortune
In 2016, President Obama issued regulations implementing section 1557, a major civil rights provision of the Affordable Care Act, which prevents discrimination in the delivery of health care access and coverage, including against transgender people. The rule applies to hospitals and medical providers who accept Medicare and Medicaid. It also applies to health insurers who participate in marketplaces. The regulations were a major victory for thousands of transgender people who rely on government-subsidized health care. Advocates were pushing for more outreach to sign transgender people up for health care -- not just for sexual heath. Regular checkups and screenings were not easily accessed. This triumph came with visions of stigma-free care for all.
But the issue of receiving gender-affirmative health care as a medically recognized condition, and how the costs of that care would be covered, continued to exist in the proverbial gray area. Some states cherry-picked this condition as one to exempt from Medicaid coverage. And although banning treatments for gender dysphoria appears to violate ACA section 1557, that has not stopped states from imposing the ban. Just recently in Wisconsin, a lawsuit was filed on behalf of two transgender people challenging a state regulation that prohibits low-income Medicaid beneficiaries from obtaining medically necessary treatments for gender dysphoria.
According to the 2015 U.S. Transgender Survey, one in four respondents reported having been denied coverage for gender transition services or denied routine care because of their transgender status. One-third of those who saw a health care provider within the past year reported verbal harassment, sexual or physical assault, or refusal of treatment. This kind of conduct interferes with not only basic health care but also HIV care and treatment. Research has repeatedly proven that regular doctor visits increase HIV treatment adherence and lower viral loads.
Preventing the Worst-Case Scenario
Repercussions from reversing the ban on discrimination against trans people under section 1557 could be catastrophic. Avoiding health care visits can not only lead to high HIV viral loads but also to missing signs of other health issues, such as high blood pressure, diabetes, or depression. The #ACApositive campaign aims to stop this from happening.
Chung says it is important to get people into care before they reach the worst-case scenario:
Transgender people, especially transgender people of color, will often not find out about their HIV status until they're in the emergency room setting. That's when they get an AIDS diagnosis. We're trying to make sure that providers and policymakers know that it's not just about transgender people: It's about creating a welcoming environment so people can be more proactive about their health care.
St. James adds that support for policies that prevent discrimination also deters transgender folks from turning to the "black market" for help. "My greatest fear is that you will see trans folks begin overmedicating, going on the black market to get what they need, such as estrogen and testosterone and also silicone. It's our responsibility to make sure that doesn't happen."
For more information about the #ACApositive campaign, click here.