Analysis LGBTQ

Medicaid Coverage for Transition-Related Care ‘Is Really a Life-or-Death Issue’

Annamarya Scaccia

Medicaid's exclusionary regulations deny many low-income transgender people access to medically necessary health care, advocates say, and cause physical, mental, and economic harm.

Pennsylvania’s ban on Medicaid coverage for transition-related care is discriminatory and unreasonable, says a transgender man who filed a federal court lawsuit against the state’s Department of Human Services Secretary Theodore Dallas in February.

The plaintiff, John Doe of Delaware County, says Medicaid denied him coverage in 2015 for an abdominal hysterectomy his doctor deemed medically necessary to treat his gender dysphoria diagnosis, according to the complaint. Doe’s complaint notes that “Medicaid coverage in Pennsylvania includes payments for medically necessary hysterectomies,” but that it bans those for individuals diagnosed with gender dysphoria. He claims state regulations banning transition-related care, which led to the coverage denial, violate federal and constitutional law. The courts granted Doe’s request for anonymity shortly after he filed his complaint.

Pennsylvania is one of 16 states that prohibit Medicaid coverage of transition-related care, including hysterectomies, gender confirmation surgeries, and hormone therapy. These exclusionary regulations deny many low-income transgender people access to medically necessary health care, advocates say, and cause physical, mental, and economic harm.

“Medicaid is supposed to be a safety net for people who can’t otherwise access health care,” said Harper Jean Tobin, director of policy at the National Center for Transgender Equality, in an interview with Rewire. “That puts people who need care and can’t afford it and can’t get covered under Medicaid in a very bad situation.”

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According to the complaint, Keystone First Health Plan, which administers Medicaid in southeastern Pennsylvania, denied Doe’s doctor’s insurance request for Medicaid coverage in July 2015. Doe appealed, but an administrative law judge upheld the decision in October 2015, stating that Keystone is bound to “clear and express regulations,” which do not “permit the approval of the requested hysterectomy.”

Doe is seeking an injunction to order DHS to immediately cover Doe for all transition-related care, as well as eliminate Pennsylvania’s exclusionary regulation. He also asked for a declaratory judgment ruling that Pennsylvania’s Medicaid exclusion regulations are discriminatory and a violation of the 14th Amendment’s Equal Protection Clause.

“We hope that that declaration will enable thousands of the neediest among us to be provided with Medicaid for their gender dysphoria,” said Doe’s attorney Julie Chovanes, who runs the Trans Resource Foundation.

The state responded to the complaint on March 31, denying allegations that its policy is discriminatory and unconstitutional. The state also believes that Doe is not entitled to any relief. At press time, no hearing or trial date had been set in Doe’s case.

“This Is Really Life or Death”

Exclusionary policies like Pennsylvania’s, advocates say, have a twofold effect: They deny necessary health care to transgender Americans and, in turn, threaten their economic stability and safety. Transgender people are disproportionately more likely to be poor and more likely to rely on needs-based state-run programs such as Medicaid, and research shows that they benefit from the very transition-related care for which Medicaid is denying them coverage.

A 2015 joint report by the Center for American Progress and the Movement Advancement Project found that transgender Americans are four times more likely to live on less than $10,000 a year per household than the cisgender population. Rates are even higher for transgender people of color—Asian and Pacific Islander (API) and Latino transgender Americans, for example, are nearly six times more likely to live in extreme poverty than cisgender API or Latino Americans, respectively.

“If you think about Medicaid as a policy that’s not just to protect people’s health but to potentially make it possible for people to climb out of poverty,” said Tobin, “then having broad exclusions on important health needs is something that helps keep them stuck in poverty.”

Research has shown the benefits of transition-related care. A 2015 Journal of Urban Health report found that when trans women have access to and utilize transition-related care, they are at significantly lower risk of suicidal thoughts and substance abuse. But remove that access, and transgender Medicaid enrollees are left in a precarious position, says Joanne Carroll, president of TransCentralPA, an advocacy group based in Harrisburg, Pennsylvania. They may forgo care, leading to emotional, mental, and physical distress; they may find risky ways to pay for care or plunge deeper into poverty; or they may use illegal methods to get the care they need.

To that last point, Carroll said transgender people will sometimes buy hormones offshore without medical supervision or go to illegal silicone pumping parties because they can’t afford augmentation.

And it’s costing lives, she said. Last January, a 40-year-old transgender woman died after being injected with silicone at a party in Santa Ana, California. Another trans woman died on New Year’s Day 2014 after two months in a coma from illegal silicone injections. Trans Road Map has a list of further incidents from 2003 through 2011 on silicone-related deaths.

“Denying people health care is causing them to seek stuff off the radar,” Carroll told Rewire, “which is ultimately killing off a lot of people.”

Advocates note that Medicaid coverage alone won’t stop these off-the-radar methods, as intolerant doctors, inadequate medical services, and other systemic barriers cause trans people to seek out that care. But, they say, eliminating transgender health-care exclusions in Medicaid is a necessary step toward addressing these safety concerns, though not a complete solution.

Leading health organizations have affirmed the medical necessity of providing coverage for transition-related care throughout the years. In 2008, the American Medical Association and American Psychological Association both passed resolutions supporting transgender health-care inclusion in public and private health insurance. Similar declarations have been made by the American Congress of Obstetricians and Gynecologists in 2011, the American Academy of Family Physicians in 2012, and the American College of Physicians in 2015, to name a few.

“The evidence is there around the effectiveness and medical necessity of this type of care,” said M. Dru Levasseur, director of the Transgender Rights Project at Lambda Legal, in an interview with Rewire. “This is really a life-or-death issue for transgender people.”

“Actionable Under the Law”

In September, the U.S. Department of Health and Human Services (HHS) released proposed regulations clarifying that civil rights protections afforded in Section 1557 of the Affordable Care Act also apply to Medicaid. The proposed HHS rule states that, under Section 1557’s sex discrimination ban, many health insurance plans—which include state-run Medicaid programs—cannot discriminate on the basis of gender identity. HHS already made this explicit for Medicare, which serves older Americans and people with disabilities, two years ago.

The proposed federal rule, then, upholds that Medicaid exclusions nationwide are discriminatory on their face, advocates say. “That basically sets out that this is actionable under the law,” said Levasseur.

HHS is expected to release its final rule this summer.

There’s case law to support HHS’s clarification. In March 2015, a federal court ruled in Rumble v. Fairview Health Services that anti-trans discrimination is prohibited under the ACA for providers and hospitals accepting federal Medicaid or Medicare funds. The federal lawsuit was brought on behalf of a young trans man in Minnesota who alleged health-care providers at a nonprofit hospital were intolerant and provided substandard care because of his gender identity.

But while federal law prohibits health-care discrimination by providers on the basis of gender identity, how it applies to Medicaid coverage varies state-to-state. Such spotty interpretation has led to a patchwork of policies protecting against transgender health-care discrimination.

Only 11 states plus the District of Columbia have Medicaid policies inclusive of transition-related care coverage, according to data from the Movement Advancement Project. Pennsylvania and 15 other states have explicit regulations denying such coverage of care. Twenty-three states have no clear rule on the matter. Nearly two-thirds of the LGBTQ population live in states that either have exclusionary policies or have no explicit policy at all.

lgbtmaFurthermore, 12 states plus the District of Columbia—nine of which have laws prohibiting health insurance discrimination based on sexual orientation and gender identity—have also banned transgender health-care exclusions from private insurance. (Although Minnesota mandates protections for transgender health care in private insurance, its state Medicaid program specifically excludes transition-related care, according to MAP.)

Advocates say that efforts to abolish state-sponsored exclusionary policies are already happening at the local, grassroots level. New York state announced in late 2014 that its Medicaid program would cover transgender health care after 12 years of campaigning by the Sylvia Rivera Law Project, a collective providing legal services to New York City’s transgender population. Advocates hope more states will roll back their prohibitory regulations as they wait for HHS to release its final rule.

“It’s a matter of time and multiple strategies for states to fall in line with where they should,” said Levasseur, “which is the medical consensus that you cannot have exclusions for certain people’s health care.”

The cost to states for inclusive transition-related Medicaid coverage would be negligible, advocates say. According to Tobin, states would only have to cover the health-care needs of “a relatively small part of the population” on Medicaid. In fact, when Oregon added transition-related care to its Medicaid program in 2014, the state’s Health Evidence Review Commission estimated it would cost the state less than $150,000 of its total annual Medicaid budget and impact about 175 enrollees per year, reported the Advocate.

“In that sense, it’s a drop in the bucket,” said Tobin. “But you’re also talking about spending a little bit of money now to prevent treating complications later.”

And, she continued, providing transition-related care would also cost states far less than covering later symptoms from untreated gender dysphoria, such as depression and substance abuse.

Pennsylvania Gov. Tom Wolf (D) has spoken out against the state’s Medicaid exclusion in response to the John Doe case. He said through his spokesperson that precluding coverage for transition-related care is “wrong” and that the state shouldn’t discriminate “based on sexual orientation and gender identity and expression,” according to Philadelphia Magazine.

“The governor hopes to have a robust conversation with the legislature, community and all other parties regarding this issue to move the commonwealth forward,” the spokesperson said last month.

“It’s great that Gov. Wolf agrees that the exclusions are wrong and should be eliminated,” said Thomas W. Ude Jr., legal and policy director at the Mazzoni Center in Philadelphia. The Mazzoni Center provides health and wellness care, in addition to legal assistance, to Philadelphia’s LGBTQ population.

“The only question is what his approach would be to actually make that happen,” he said in an interview with Rewire.

Eliminating exclusionary policies would, in no small measure, open the door to fundamental health care for transgender people and save the states money. But that’s only one piece of the puzzle regarding “health-care delivery all-in-all,” said Carroll. The other: ensuring physicians actually treat transgender patients.

Carroll says she’s fortunate to not have faced many barriers to care. But she acknowledges she’s the exception and not the rule; more often, transgender people are denied treatment for something as common as walking pneumonia on the basis of their gender identity alone. And in many states, including Pennsylvania, there is no law broadly protecting the transgender population from discrimination in health care, employment, or public life. (Despite bipartisan support, the so-called PA Fairness Act has languished in a Republican-controlled general assembly that’s had trouble even passing its budget bill, said Carroll.)

“Right now we’re almost captive to these individual physicians whether or not they’ll even agree to treat somebody,” she said.

In a way, John Doe’s case is bigger than itself. While the complaint addresses a specific systemic barrier, it also underscores the discrimination transgender people face in health care across the board. Whether it’s hormone therapy or a yearly physical, advocates say, transgender people should have uninhibited access to care, period.

“Medicine is medicine,” said Carroll.

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