This winter, as the temperature hovered around freezing in northern Indiana, Rickie LeDuc dreamed of summer. She imagined herself enjoying the sun, free from the stress of being misgendered.
By summer, she hopes, she can go the gas station without getting called “sir.”
“Every time that happens, I feel it, like getting punched in the gut,” LeDuc, who is a transgender woman, told Rewire. “I would just like to just walk through the world as I am and who I am and be seen that way by other people.”
But to get there, LeDuc must raise about $28,000 to pay out-of-pocket for facial feminization procedures that her insurance company excludes because it considers them cosmetic. On top of that, for weeks, she has been navigating a bureaucratic tangle to secure coverage for genital reconstruction surgery. All the while, the Trump administration is moving to undermine health-care protections for patients like her.
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Two days after Rewire featured LeDuc in an investigation about the lack of providers willing and able to care for trans patients in Indiana, LeDuc told us she had received an email from her surgeon’s office saying her insurance plan did not cover genital reconstruction surgery.
“The news hit me pretty hard,” LeDuc wrote to Rewire. “I was getting my oil changed when I read the email, and had to fight back the tears. I feel completely deflated.”
LeDuc contacted a human resources representative at work, who told her that she thought the surgeon was wrong and her plan did cover the surgery. In fact, the rep said, the law required such coverage. It’s true that Title VII of the Civil Rights Act and Section 1557 of the Affordable Care Act (ACA) protect many trans patients.
But in practice, such patients often must fight for care—facing rampant discrimination, a dearth of competent and accepting providers, exclusions from insurers, and an atmosphere of confusion and uncertainty fueled by a federal administration that is increasingly indistinguishable from the extreme anti-LGBTQ groups whose alumni fill its ranks.
For LeDuc, advocating for herself with her employer has brought its own risks; like most states, Indiana has no employment protections for trans people, or laws to prevent discrimination against them in public accommodations, like medical facilities.
“So she could be fired for standing up and saying, ‘I’m transgender and I’m having trouble accessing the health insurance that you, my employer, offer to me,’” Naomi Goldberg, policy and research director at the Movement Advancement Project, told Rewire. “And the doctor’s office could deny her, right? I mean, there’s no public accommodations protections. There are all these levels at which one person can say no.”
Transgender people make a range of choices about their bodies: Some need medical interventions like hormone therapy and surgery to address gender dysphoria, and others do not. For many who do need it, surgery is unattainable. Trans people are more than three times as likely as cis people to be uninsured. Even with insurance, in a national survey conducted in 2015, the majority—55 percent—of those who sought coverage for transition-related surgery in the past year were denied.
LeDuc took a job as a forklift operator—working ten-hour days, sometimes seven days a week—in large part for the insurance coverage and pay, which she hoped would help her save money for the surgery to reshape her facial structure. It appears her Anthem insurance policy does cover genital surgery, as long as LeDuc meets a list of criteria, although her surgeon’s office said it could take 30 days to confirm her coverage.
Barring a windfall, LeDuc has all but given up on the dream of healing from facial surgery before summer.
She is one of many trans patients navigating an insurance landscape as it shifts beneath their feet.
Section 1557 of the ACA banned most insurers from discriminating on the basis of sex, and the Department of Health and Human Services (HHS) under President Obama said it would enforce the law to protect trans patients. The Trump administration has not only signaled plans to end such enforcement, it has moved to empower providers who discriminate against LGBTQ patients under the guise of religion, and to ban trans people from the military over false claims about their medical costs.
That leaves trans patients reliant on federal courts—which have increasingly sided with LGBTQ people under sex-based anti-discrimination protections, although Trump is quietly stacking these courts with bigoted judges—and a patchwork of state protections. If you’re denied care as a trans patient, your level of recourse depends in part on where you live.
Nineteen states and Washington, D.C., prohibit private insurance companies from imposing blanket bans on transition-related care, although insurers can still reject individual claims or force patients through bureaucratic hoops. Fifteen states and D.C. explicitly include transition-related care in their Medicaid policies; eleven states explicitly exclude such care, in apparent violation of federal law.
LeDuc lives in Indiana, where there are no state laws protecting her health care. But even in states with strong policy protections, like New York, Rewire found that patients frequently run into barriers accessing care to which they are entitled on paper.
“There Is Nothing Cosmetic About Me Being Able to Live or Die”
On December 6, 2016, Myasia, a lifelong resident of New York City, sat before an administrative law judge to explain how she cried when she looked in the mirror. Myasia, who asked Rewire to withhold her real name for her safety, told the judge about the anxiety she felt as a transgender woman. Twice, over the years, she has been attacked by strangers. One called her a freak and hit her with the butt of a gun; another hit her in the eye so hard it shattered her socket, requiring doctors to insert a metal mesh.By the time of her hearing, Myasia had been fighting for more than a year to get coverage under New York Medicaid for facial surgery to bring her appearance more in line with the way she sees herself. In 2015, following a lawsuit from legal services groups, Democratic New York Gov. Andrew Cuomo’s administration lifted a blanket ban on Medicaid coverage for transition-related care, allowing coverage for genital reconstruction surgery and hormone therapy. But the state initially excluded procedures it deemed cosmetic, like the one that Myasia sought.
Trans women and legal groups fought back.
“A lot of our trans women members were like, ‘There is nothing cosmetic about me being able to live or die, about me being able to get a job or not, about me being able to access housing,’” Sasha Alexander, director of membership and co-director of the movement-building team at the Sylvia Rivera Law Project (SRLP), told Rewire.
As advocates fought for more inclusive regulations, Myasia faced one roadblock after another. After her insurer refused to authorize the surgery, she requested a fair hearing through an external review process available, in one form or another, in every state. The judge upheld the denial. Then, with the support of an SRLP attorney, she sought another hearing, where she laid bare the most intimate details of her gender dysphoria.
“I remember sitting and telling the judge that I felt this sense of anxiety, but also grief, whenever I looked in the mirror,” Myasia told Rewire. “I felt this sense of being trapped or in a jail and with very limited air. And how every morning, it’s a challenge when I wake up to find love for myself, and to find her. I see her in my eyes but I don’t see her in my face.”
By “her,” Myasia means the woman she has always known herself to be.
Myasia left the hearing certain that she and her attorney had made a compelling case that her surgery was medically necessary to address her gender dysphoria. But the judge denied her request. Myasia felt hopeless and suicidal, feelings intensified by the recent presidential election. She took the rejection as a sign of what was to come for trans people.
“Not only was it hard in my own world, in my own house, you know, looking in the mirror and feeling comfortable and safe and free in my own body, but when I went out in the world, they reflected that back on me,” Myasia said. “It just seems like everyone feels now it’s OK to demonize and attack and bully and discriminate and intimidate trans people.”
Indeed, last year, at least 28 transgender people were killed, marking the deadliest year on record in at least a decade. Just two months into 2018, at least six transgender women have been killed. The majority of these victims are women of color like Myasia. Just this past weekend, a shooter fired into a transgender bar in Las Vegas, reportedly injuring a Black trans woman, although the attack received little mainstream news coverage.
The day after Myasia’s hearing, an updated rule went into effect explicitly stating that New York Medicaid would cover procedures like facial feminization if patients demonstrated they were medically necessary to treat gender dysphoria. But patients still routinely face denials and bureaucratic hurdles, and often struggle to find timely care among a limited number of experienced providers, particularly outside of New York City, advocates said.
“There are still these barriers in place despite the change of the rule,” Belkys García, staff attorney at the Legal Aid Society, told Rewire. “I’d say that that’s still the goal, making that real in people’s lives, where they are able to access care that feels safe and effective and not experience discrimination. I don’t think we are there yet.”
After more than two years, Myasia got her approval. She switched to a Medicaid plan that is more supportive of trans people and other vulnerable patients. She had the surgery to re-contour her brow last month.
As she recovered from her operation at home, Myasia told Rewire she was excited about her future.
“I’m starting to kind of see her, even though I’m swollen,” she said.
“I’m Fucking Shaking. This Is Life Changing”
While state policies vary, Section 1557 of the ACA was a game-changer for trans patients nationwide—like Katelyn Burns, a Maine-based freelance journalist who has written for Rewire.
In 2016, Burns was told that the Anthem insurance plan that she had through the bank where she worked did not cover transition-related procedures. Burns, who was hoping to have genital reconstruction surgery, went into the bathroom at work and cried for 20 minutes.“I didn’t know how I was supposed to fix my dysphoria around that particular area of my body,” she said in an interview. “It was just really devastating.”
In an emailed statement to Rewire, an Anthem spokesperson claimed the company “has covered sex reassignment surgery per state regulations” since 2007, but did not respond by press time to follow-up questions about which states and markets such coverage was offered in. The statement said Anthem “expanded” its coverage of transition-related procedures in 2017.
Burns launched an online fundraiser to pay for her surgery, a step that required her to air the most intimate details of her gender dysphoria on a page available to anyone with the link. Crowdfunding has become a last refuge for many patients, with almost half of the money raised going to medical expenses.
“Currently I shower with my eyes closed and I get dressed before returning to the bathroom mirror,” Burns wrote on her GoFundMe page. “Even then, I’m still reminded of my incorrect genitals when I pull on a pair of underwear or I can’t quite smooth out the front of my skirt.”
Burns, who has penned viral articles and frequently faces off with transphobic trolls on Twitter, said her fundraising videos have been posted and mocked on anti-trans websites.
About a month after she launched the fundraiser in February 2017, Burns received a packet from Anthem that changed everything. The company was dropping its “Sex Changes” exclusion.
Burns tweeted a photo of the notice with the words “HOLY SHIT.”
“I’m fucking shaking,” she wrote. “This is life changing.”
Section 1557 prohibits health-care entities that take federal funds from discriminating on the basis of sex. In 2016, the Obama administration issued a final rule saying that meant insurers could not categorically exclude transition-related care. The day before the rule went into effect for many insurers, a federal judge halted enforcement, but insurance companies can still be sued by individuals for denying care. Burns wasn’t the only one to benefit. More than 95 percent of insurers removed transgender-specific exclusions from 2017 marketplace offerings studied by Out2Enroll—although about half still excluded at least some transition-related procedures.
Burns, for example, enrolled in a marketplace plan offered by Harvard Pilgrim when she became a full-time freelancer. The plan covered genital reconstruction surgery and some facial feminization procedures, but it didn’t cover something Burns needed to address one of her most profound sources of dysphoria: her hair. While Harvard Pilgrim deems hair transplants cosmetic, that clashed with the dysphoria Burns felt.
“It’s just a feeling of just worthlessness, or ugliness,” she told Rewire. “There’s a little bit of sort of humiliation in it, like, ‘Oh god, what are you even thinking, even trying to tell people who you really are when you’re looking like this?’ And it got me clocked as trans I think a lot, especially when my hair was shorter. It’s just utter despair.”
Burns used funds she had raised online to pay for the transplant, which, even with a discount from the surgeon, cost $7,600. Now, as she pursues genital reconstruction surgery and facial feminization, the costs are adding up fast: There’s her $7,000 deductible, taxes, fees to GoFundMe, and trips from Maine to Arizona and Boston, where her surgeons are. There’s also the work she loses by spending up to 20 hours a week juggling the logistics of her care. She has restarted her fundraiser, but may still need a loan.
Burns also planned to pay out-of-pocket for electrolysis to remove hair on the skin that will form her vagina, a procedure required by her surgeon but excluded, according to written policy, by her insurer. In an emailed statement to Rewire, Harvard Pilgrim said it does cover electrolysis when required for genital surgery.
“I believe we recently changed that,” a spokesperson said in an email. After publication, the spokesperson sent an updated written policy that takes effect April 1, which states that electrolysis is excluded “except when required pre-operatively for genital surgery.”
The picture for patients like Burns has improved dramatically in recent years, according to Kellan Baker, a health services researcher at Johns Hopkins University who worked on passage and implementation of the ACA while at the Center for American Progress (CAP).
“Historically, a lot of people have thought that transgender people are too sick, too weird, too freakish, too beyond the norm, so we’re not even going to talk about what their needs might be, because we have decided that their medical needs or even their existence is illegitimate right off the bat,” Baker told Rewire. “That’s where we were for a long time.”
Medicare, for example, categorically excluded coverage of transition-related surgeries until the Obama administration lifted the ban in 2014.
Before the ACA, trans people could be denied insurance altogether if their carrier considered being trans a preexisting condition. In 2013, a third of LGBTQ people earning less than $45,000 a year were uninsured; that dropped to one in four in 2014 and one in five in 2017, according to an analysis by CAP.
Those gains are now at risk.
In 2016, in response to a lawsuit from states and a Catholic health system, a federal judge in Texas halted enforcement of the Obama administration’s Section 1557 rule, which protects trans patients and those seeking reproductive health services like abortion. The Trump administration asked the judge to return the rule; release of its revised version could be imminent. Then, the administration put Heritage Foundation alum Roger Severino, who has argued strenuously against the 1557 protections, in charge of the anti-discrimination wing of HHS.
Severino unveiled a new office and draft rule to defend providers who discriminate under the guise of religion. The rule cites the case of Evan Minton, a transgender man who had his hysterectomy cancelled by a Catholic hospital, as an apparent example of the need to protect providers who deny care, rather than the patients they harm. Catholic hospitals, which routinely refuse treatment on religious grounds, have meanwhile expanded their reach.
But there has been progress elsewhere. The number of employers offering trans-inclusive health coverage increased from 647 last year to 750 this year in the Human Rights Campaign’s corporate equality index. And advocates insist the law is still the law—even if the administration won’t enforce it.
“The Trump administration is doing everything that it can to slow or erode those gains, and so those gains are definitely at risk,” Harper Jean Tobin, policy director of the National Center for Transgender Equality, told Rewire. “But we still have the potential to keep making progress in the courts, at the state level, and through consumers standing up for their right to the coverage that they’re entitled to.”
In other words, the future of transgender health access may depend on the willingness of patients like LeDuc, Myasia, and Burns to continue to disclose the most intimate details of their lives in public—to fight back against insurers, employers, state regulators, and the federal government.
Tell us your story. Have you been denied access to health care based on your gender identity? Email [email protected] For resources on what to do if you’re denied care, you can visit Out2Enroll or the National Center for Transgender Equality.