Jordan,* a kindergarten teacher who lives in Seattle, has spent months side-eyeing the calendar and silently willing this interminable school year to end, but for reasons entirely unrelated to the break ahead: This week, he goes under the knife for trans man top surgery. Over just a few hours, a surgeon will remove both his breasts, reconstruct the contours of his torso, and re-apply his nipples to his newly-formed masculine chest. When it’s done, Jordan exclaims excitedly, he’ll feel as comfortable taking off his shirt at the beach this summer as any man working on an ill-advised vacation sunburn.

He’s waited until now because he’ll need six weeks after the procedure before he’ll be able to safely lift more than ten pounds—a big ask for a man whose job requires him to chase down and wrangle five-year olds all day. Finally, a year after getting a date on the surgeon’s calendar, his moment has arrived. But as Republicans in D.C. inch closer to bringing a health care reform proposal to the Senate floor, Jordan, like the rest of America's 1.4 million trans people, is wondering whether the insurance that covers his health care costs—from gender-affirming surgery all the way down to seasonal allergy medicine—is on the verge of disappearing for good.

How We Got Here

For a long time, trans people basically couldn’t get health insurance in the United States, explains Mara Keisling, the executive director of the National Center for Transgender Equality. Before the Affordable Care Act, employer-sponsored insurance often contained exclusions that forced trans people to pay transition-related costs, including hormones and lab tests, out of pocket. Surgery was considered elective, which meant that it was a realistic option only for those who could write a check. Most self-employed trans people could not buy insurance at any cost, because being trans was considered a preexisting condition, and federal law at the time allowed insurers to deny applications altogether on that basis.

Trans people also struggled to get coverage for what insurers viewed as sex-specific care. Insurance companies are for-profit enterprises, and it is in their interest to deny as many claims as they can. Simply put, if an insured person was trans, the claim adjuster would use that as another reason to do just that. For example, a trans woman might be denied coverage for mammography, since, in the eyes of the insurer, it wouldn’t be “necessary” if she hadn’t transitioned. On the other hand, if she needed prostate care, she might be denied on the grounds that she shouldn’t need it anymore. Keisling recalls two people who were told by the same doctor for the same reason that they needed a hysterectomy. While the non-trans woman’s claim was approved, the trans man’s was not, because his cost was deemed “transition-related.”

The unavailability of health insurance meant that many trans people came to rely on a “gray market,” venturing outside the health care system to buy hormones at a discount from sketchy Internet sources or well-supplied friends. Those who couldn’t afford the surgery’s sticker price sometimes tracked down dubiously-qualified service providers—“motel surgeries in Mexico,” Keisling says—and accepted the risks because they had no real choice.

Jennifer Leitham, a prominent jazz musician who played in the house band on The Tonight Show Starring Johnny Carson, recalls carefully saving for years in order to pay the “daunting” tab when she transitioned in 2001. Jennifer was set to have her procedure done in Thailand when, at the last minute, a Los Angeles-based surgeon offered her a discount if she would agree to be featured in a documentary on her surgery. Even so, she says, "Paying for it took everything I had.” But a host of complications and nearly a dozen emergency surgeries had her in and out of the hospital for ten months, and the no-frills insurance policy she bought before her transition, like all policies, had its limits. It took her four years to dig out of the financial hole into which she had suddenly plunged.

"I can’t even decipher my own policy. I’m a normal person. If I’m rejected, the most I know to do is to send a letter. I can’t argue forever."

Some fifteen years later, cultural perceptions of gender nonconformity have evolved significantly. In 2008, the American Medical Association recognized that “an established body of medical research… demonstrates the effectiveness and medical necessity” of hormone therapy and surgery for those with gender dysmorphia. But market forces, says Keisling, are the main reason that insurers changed their tune: Employers saw their employees’ needs going unaddressed, and they pushed the industry to fix it.

Today, trans-related costs have stabilized in large part because they are insured. When people had to pay for care out of their own pockets, the market was more elastic—providers could charge higher prices, because the people who paid for it could afford it. Shifting the cost burden to insurers changed all this. Take the City of San Francisco, which began charging city employees a $1.70-per-month fee when it began offering coverage for trans-related costs. Even after accounting for additional claims, the city made money off the arrangement—so much, in fact, that they were reluctant to stop collecting the surcharge even when they determined it wasn’t necessary.

Enter the Affordable Care Act

President Obama’s signature legislative achievement has made health insurance more available to trans people than ever. Just as insurers could no longer turn away hemophiliacs, or cancer survivors, or anyone else with a preexisting condition, the Affordable Care Act meant that trans people could no longer be turned down for insurance because of that status. A specific provision of the Act known as Section 1557 prohibits discrimination in health care based on, among other things, sex, which courts have long interpreted to include gender identity. Insurers could no longer issue blanket exclusions of all things transgender, and that doctors could not refuse to treat someone because of their trans status.

Devin, an engineer in her early 40s who began transitioning three years ago, is reaping the benefits. She underwent the first phase of sex reassignment surgery in March, and her costs were limited to her insurance policy’s $5,000 out-of-pocket maximum for the year, plus airfare and hotel. (Her employer’s Health Reimbursement Arrangement reduced this figure to somewhere between $2,500 and $3,000.) Perhaps the best part, though, is how simple it was. Her procedure was performed by an in-network specialist, and since then, she has received monthly calls from an insurance company case manager, who makes sure she knows about trans-related costs covered by her policy. (“Would I like speech therapy?” she laughs, recalling one of their offers. “Of course I’d like speech therapy!”)

For Jennifer Leitham, surgery was already behind her when the ACA came along. Still, the policy changed her life. Unlike most self-employed trans people, while working as a musician she was able to procure a pre-ACA insurance policy—a bare-bones policy riddled with exclusions that cost about a grand per month. (She doesn’t think she actually filed any claims because her deductible was so high, and she could afford it only thanks to generous donations.) Today, Jennifer says, her marketplace plan costs about a quarter of that figure. An avid baseball player in her younger days, she’s picked up softball in her early 60s, because she no longer lives in fear that a freak catastrophic injury will lead to financial ruin.

Jordan’s experience has been a bit more mixed. His lab tests require only a nominal co-pay, and his testosterone has been pretty cheap. Although he’s not sure, he suspects his doctor is coding hormones to the insurance company as if Jordan were an aging man who needs a testosterone boost. (Several others with whom I spoke guessed something similar about the way their prescriptions are submitted.) “Insurance companies are fine with covering men who are losing muscle mass or fighting hair loss,” he says wryly. “Doctors fluent in trans issues have learned how to work insurance to be sure that their patients get the care they need.”

Navigating the Coverage Labyrinth

Unlike Jennifer and Devin, though, Jordan hasn’t yet had surgery, and that is where his troubles begin. When he called his insurer last year to ask about approving coverage for top surgery, he was directed to a representative on the other side of the country who politely told him, without further explanation, that his policy covered exactly zero percent of that procedure. If Jordan wanted it, he'd have to pay for it himself.

It’s not clear why this happened. Washington state expressly prohibits insurers from discriminating based on transgender status, above and beyond the protections afforded by Section 1557. He has one important clue, though: When one of Jordan’s friends, who happens to have the same insurer, recently prepared for top surgery, they received a written notice that their claim had been denied because of an exclusion for “transsexual surgery.” According to the insurer, their policies are written in a different state than the one in which Jordan and his friend live, and that state’s law does not prohibit enforcement of this exclusion. Jordan sent a letter asking for an explanation, alleging that denying him coverage was illegal. He simply never heard back.

This was profoundly frustrating. “I can’t even decipher my own policy,” Jordan says. “I’m a normal person. If I’m rejected, the most I know to do is to send a letter. I can’t argue forever.” An attorney at a prominent trans advocacy organization tells me that state law distinctions aside, denying claims on this basis should be illegal under Section 1557, and he wonders if the insurer simply denied Jordan’s claim and hoped that he wouldn’t push back. Bad-faith denials aren’t unique to trans-related health care costs, but in an area that is very much in flux, rubber-stamping denials might be an easy way for an insurer to save a few bucks.

Jordan’s surgeon charges about $9,000 for top surgery, which doesn’t include the costs of traveling to the clinic or of staying in the area until he’s well enough to return home. (More invasive procedures can far exceed that price.) With no insurance coverage in sight, he did what many in the trans community do, and, incidentally, what his friend did after their claim was rejected: He crowdfunded. Even after GoFundMe took its fees off the top, Jordan ended up hitting the target number almost on the dot. He admits that he’d like to have more cash on hand in case complications arise, but the embarrassment inherent in asking other people for donations, he says, prevents him from trying for anything more.

Somehow, being denied coverage altogether was not the end of Jordan’s odyssey with the insurance company. Last month—a year after being told not to bother filing a claim—he suddenly received a letter: His claim, mystifyingly, had been revived and placed “under review.” Maybe the surgeon’s office started making calls, or maybe Jordan’s original letter languished on the wrong desk for too long, or maybe an eagle-eyed compliance lawyer sounded the alarm. Since then, Jordan has received several follow-up letters, each more opaque than the last. The first one suggested that certain costs might be covered, but a subsequent notice reversed course, stating that his claims would indeed be denied as not “medically necessary.”

This baffling sequence of events means that Jordan goes under the knife this week still unsure of what, exactly, he’ll have to pay on the other side—which, for him, raises hard questions about the way he’s been planning to foot the bill until this recent flurry of nonsensical paperwork. “This is other people’s money I raised,” he reminds me, and he has no intention of pocketing it. Until the insurer can give him a straight answer, though, he just has to wait and see.

If the Affordable Care Act Disappears, What Happens Next?

Whether Jordan's insurer will ultimately chip in is a question that might become moot before long, anyway. President Trump’s administration has already begun rolling back various Obama-era policies that protect transgender Americans, and in April, House Republicans passed the American Health Care Act, which would gut key provisions of the ACA and kick tens of millions of Americans off the insurance rolls. The Senate’s proposal differs in some important respects, and the bill has a long way to go before it becomes law. Even so, Paul Ryan's vision for the future of health care in this country has been more than enough to put the trans community on edge.

If the AHCA were to become law, forget about trans-related costs, says Keisling—in states that choose to once again allow insurers to deny coverage based on preexisting conditions, trans people might not be able to get any insurance. A trans person who has cancer, or who has a spouse who has cancer, is probably more concerned about paying for chemotherapy than they are about paying for hormones. The Senate’s bill would retain the ban on preexisting conditions discrimination, but this change will almost certainly be unpopular in the House’s far-right wing. Similarly, a key section of the ACA mandated that insurers cover “essential health benefits,” which meant that for the first time, many trans people had meaningful access to preventative care, including regular cancer screenings and HIV testing. Allowing states to waive this requirement, Keisling explains, will kill people.

Jennifer Leitham knows that she could be in danger. She suffers from glaucoma and would almost certainly go blind without treatment, and at this point in her career, if trans-related exclusions cause her premiums to return to their astronomical pre-ACA levels, she won’t be able to afford them. Medicare eligibility is on the horizon, but even so, the thought of having to go uninsured between now and then terrifies her. Her softball career would be over, she says, because she can’t take the risk that a poorly-timed slide will end in medical bankruptcy. Without her marketplace plan, she says matter-of-factly, “My health will disintegrate rapidly.”

A key section of the ACA mandated that insurers cover 'essential health benefits'... including regular cancer screenings and HIV testing. Allowing states to waive this requirement, Keisling explains, will kill people.

The future of the ACA’s nondiscrimination guarantee is also in doubt. Even with Section 1557 on the books, a 2015 survey conducted by the National Center for Transgender Equality found that 25 percent of respondents had skipped necessary medical care in the previous year because they were afraid of how they’d be treated. This can take many different forms, Keisling explains: Some doctors profess a mixture of ignorance and benevolence, urging trans patients to go elsewhere because their offices are unsure how to treat “people like you.” She also describes “trans broken arm syndrome,” in which a trans person who comes in with a compound fracture finds themselves subjected to a comprehensive full-body exam that, mysteriously enough, does not seem to be required of non-trans patients.