STAT

09.19.15 4:00 AM ET

Transgender? A Doctor Won’t See You Now

Trans patients face do-or-die situations when trying to find transition care. But the medical community is not ready for them.

In August 2014, Kailey Truscott went to her primary-care doctor with a letter and a mission. The letter, from a therapist, confirmed what she’d known since she was 7—she was a woman. The doctor’s appointment was to begin medical treatment so her body would reflect that fact.

But the path to transition wasn’t so simple. Her doctor didn’t balk, but she didn’t write a prescription for estrogen, either. She’d never provided hormone therapy to a transgender person before, she told Truscott. She didn’t feel comfortable starting now.

But she didn’t leave Truscott in the lurch. Instead, about a week later, she called Truscott with mixed news. She’d found a clinic that could do transition care. But it was more than two hours away from the small western Maryland town where Truscott lives.

“It’s the only place around here that I could find,” Truscott, 31, remembered her doctor saying.

Now, when she needs transition-related care, Truscott drives an hour to a Metro station, takes a train for another hour, and then walks for 15 minutes to Whitman-Walker Health, an LGBT clinic in Washington, D.C. “Imagine when my appointment is at 8 a.m.,” she joked.

Truscott’s not the only one traveling long distances for transgender-friendly care. Whitman-Walker reports patients come from as far away as West Virginia for transition management. This barrier to access means transgender people often delay care or seek hormones on the street, occasionally leading to dangerous or deadly consequences. But even when doctors don’t show bias, most have no idea how to provide transition care, or what issues to watch for.

Even in areas where transgender patients flock to get care, providers can be hard to find, said Barbara Lewis, a Whitman-Walker physician assistant who has been providing care to transgender patients for decades. In DC, transition-related care is technically covered. Still, Lewis said she’s hard-pressed to find a surgeon who can construct genital organs for trans women, a key part of the process for some women.

 “There are no doctors that are competent to do surgery,” she said. “They can do breast augmentation and reduction, but there are no doctors trained to do a vaginoplasty.”

Even in DC, she has to refer patients to other states.

One Regimen Does Not Fit All

When new patients arrive at Whitman-Walker for transition care, they often start by having a conversation with Lewis.

She wants to know: Where do they fall on the gender spectrum? Do they identify as male, female, genderqueer (in which they don’t identify entirely with one binary sex or the other all the time), or something else? What are their sexual practices, and what kind of body parts do they need or want for those practices?

In Lewis’s experience, many trans women want to have a vagina, but some don’t. For many transgender men, so-called top surgery—that is, the removal of breasts—and a removal of estrogen-producing ovaries or a hysterectomy are desirable, but not always. Sometimes, Lewis says that trans people avoid surgical intervention on certain parts of their bodies for a variety of reasons, including a desire to have children.

Most come in, like Truscott, because they want hormones—but even that’s not universal.

“It’s not one size fits all,” she said. “We have to talk about who they are and where they want to be.”

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For those who opt for hormones, it’s not one-dose-fits-all, either. Some people’s bodies are more sensitive to hormones than others. Lewis said she often reminds women that more is not always better. Plus, if a transgender woman has a history of blood clots, the estrogen replacement estradiol may be dangerous. If she is a smoker, Lewis encourages her to stop, since that, too, increases the risk of blood clots.

Indeed, there’s no one way to transition. People can be transgender without ever taking hormones or altering their bodies. One can take hormones alone and never have surgery. Others need hormones and genital reconstruction to feel at peace, but stop there. Still others find it critical to have all of the above, plus breast augmentation, tracheal shaving, and facial feminization, which reshapes the face to appear more typically feminine, if they are women, and breast removal if they are men.

Mirror, Mirror on the Wall

This is not a matter of vanity; it’s a matter of survival, said Dru Levasseur. As director of the Transgender Rights Project at Lambda Legal, he’s filed discrimination suits against hospitals that refuse to treat or mistreat people because of their gender identity. As cofounder of the Jim Collins Foundation, he reads hundreds of applications a year from transgender people desperate for transition-related surgeries but unable to afford it, either because they don’t have insurance or because their insurance doesn’t cover it.

People are “hanging on by a thread” when their transition care is at risk, he said, and the statistics bear that out. One 2006 study of patients at a Dutch transgender clinic found a suicide rate that translates to 800 for every 100,000 people. (By comparison, only 11.5 in 100,000 people in the general U.S. population kill themselves.) Other statistics are not that high, but still alarming: Forty-one percent of respondents to the 2011 National Transgender Discrimination Survey had attempted suicide. A 2011 review in the Journal of Homosexuality found that parental rejection, job discrimination, and trauma are all associated with suicide attempts for transgender people.

But the Dutch study found some good news: When patients received access to transition-related care, their suicide rates plummeted, from 29 percent to 5 percent.

“People are in dire need,” said Levasseur. “This is not about [some hazy notion of] being able to be who you are. The ability to get the health care and treatment you need for gender transition contributes significantly to staying alive.”

Hope on the Horizon

So when the Department of Health and Human Services issued proposed language last month that would make covering transition-related care mandatory under the Affordable Care Act, Levasseur got choked up.

That’s because the proposed rule extends protections based on gender to health care. Previously, the same rules, under Title IX, had been extended to education. Specifically, the rule would prohibit insurers from denying coverage to people based on their gender identity—a common practice back when insurers could deny people for the preexisting condition of “gender dysphoria,” which is the medical diagnosis necessary to jumpstart medical transition. The rule also will require providers to treat people “consistent with their gender identity—including in access to facilities”—so, presumably, a trans man would not be forced to use a women’s restroom. It would also prohibit doctors from refusing to treat a person for ovarian cancer simply because they are a trans man who still has his ovaries, for instance, or prostate cancer in a trans woman with a prostate.

And finally, the rule would prohibit insurers from explicitly excluding coverage for “all health-care services related to gender transition”—including those hard-to-find surgeries.

“This is the most comprehensive health-care protections for transgender people to date,” he said. “It’s massive.”

People Will Find a Way to Get What They Need

But none of this matters if you don’t have insurance, and if you can’t get a job because of discrimination against your gender identity. According to the 2011 Journal of Homosexuality article, transgender people have double the rate of unemployment as non-trans people—and the rate is even higher if you’re not white.

Indeed, Maryland resident Truscott is among the lucky ones. She was able to transition on the job without a pushback. She has health insurance—only 40 percent of transgender people have coverage through their work, and those rates are likely lower among trans women of color. While her father rejected her when she came out—telling her, “God made you male, and God doesn’t make mistakes; you’ll never pass”—her mother and friends have embraced her. She has the job flexibility to make the four-plus-hour round-trip to Whitman-Walker. And she’s white, so racial discrimination isn’t a common problem that could add to reactions people might have to her gender identity.

At Casa Ruby, an LGBT center in Washington, founder Ruby Corado said it can be very different for the women of color who come to her center. She’s seen “girls”—trans women of color—without insurance buy not just hormones on the street, but also silicon to inject straight into their breasts, because they’re so desperate for transition-related services. Another girl, she said, injected vegetable oil into her breasts at a friend’s suggestion. That can obviously make women very sick. The issue, she said, isn’t just trans-sensitive care, but culturally competent care, as well.

Corado, herself, has been taking hormones for 22 years.

“But it’s with a private doctor,” she said. “So you better have the money to fork over.”

Andrea Zekis knows this firsthand. When she began to transition medically six years ago, she found a doctor through word of mouth at local LGBT centers and support groups in Little Rock, Arkansas. But to get surgery, she had to go to California and pay out of pocket. And instead of recuperating in her home, she stayed with family in Chicago. She was too afraid, she said, that there would be complications and local doctors would refuse to treat her.

What would happen, though, she said, if she weren’t privileged enough to make it to an LGBT center? What if she were so deep in stealth with her gender identity that she felt alienated from services? It felt, she said, like she had privileged information.

But it shouldn’t be that way, she said. That’s why she and Kate Stewart, a researcher at the University of Arkansas Medical Center, are starting what they hope will be a multiyear needs-assessment and research project on improving care for transgender people in the state. She hopes, she said, that it will expand access to care in Arkansas by empowering transgender people to ask for the care they need, and educating physicians about the experiences and issues surrounding care for transgender people.

Her hope is that, if people can get the care they need in Arkansas, they won’t have to leave. Either temporarily or permanently.

“People will find a way to get the care they need,” she said. “I pay my taxes and I pay my premiums, just like everyone else. I should be able to use health care like everyone else, too.”