Emily Pittman Newberry fought Kaiser Permanente—and the Centers for Medicare and Medicaid Services (CMS)—for three years to get assistance paying for gender confirming surgery, then started an Indiegogo campaign instead. tash shatz came out as transgender in high school, dipping into a college savings fund to pay for transitioning care and deferring higher education for a few years. When Janis Booth realized she was transgender, she took matters into her own hands. A former registered nurse, she was in a good position to do so.
“Ironically, I was the first male nurse at [my nursing school]—or so they think. I was the first male to graduate, the first male to work at that hospital—or so they think,” Booth, 63, now a programmer for WebMD, says wryly.
At 60, Booth began to buy and self-administer hormones online—though she asked a doctor she'd known for years to monitor her blood to make sure her estrogen levels were safe—for about a year before getting a letter from a therapist enabling her to seek a hormone prescription from an endocrinologist. Her insurer covered the hormone prescription, but no other aspect of transgender care.
Scrambling to find the money to pay for care—and not just for transitioning, but also for routine care post-transition—is often still the norm for transgender people nationwide, despite a constellation of public and private policy changes expanding access.
A friend of Davis' was asked to pay out-of-pocket to set a stress fracture in his leg, after the insurer argued that hormone therapy must have increased the likelihood that the bone would break.
“There's been a revolution in the understanding of what medically necessary care means for transgender people in the last 10 years,” says Masen Davis, executive director of the Transgender Law Center in San Francisco. Twenty-five percent of Fortune 100 companies offer trans-inclusive health benefits, according to a Human Rights Campaign fact sheet that notes smaller percentages for both Fortune 500 (eight percent) and Fortune 1000 (13 percent) companies—but the numbers for 2004 are either one percent (Fortune 100) or nothing. Public bodies like the cities of Portland and San Francisco, and Multnomah County (where Portland is located), have also offered trans-inclusive care to their employees in the last few years.
More employers have started offering benefits to work around the fact that most private insurers either provide limited access to transition care (hormones, but not surgery) or issue policies with clauses explicitly refusing to cover any medical care related to gender transitioning.
Those clauses give insurers the ability to reject all kinds of claims, Davis says: “Many years ago when I first started my transition, I couldn't even get care for my bronchitis.” Finding providers who would work with him was tough, but getting even ordinary claims accepted can be tougher: a friend of Davis' was asked to pay out-of-pocket to set a stress fracture in his leg, after the insurer argued that hormone therapy must have increased the likelihood that the bone would break.
California, Oregon, Colorado, Vermont, and Washington, D.C. have all passed laws prohibiting insurers from issuing policies with clauses that discriminate against transgender patients, with Oregon and California both issuing administrative rules this year clarifying the law.
How well things are working in those states is difficult to ascertain. Cheryl Martinis, public information officer for the Oregon Insurance Division, said her office has received five formal complaints—the details of which are confidential—relating to transgender care since Oregon clarified its non-discrimination policy in January. Prior to that, she notes, there wasn't a complaint code.
Activists have argued for trans-inclusive care from a couple of perspectives. First, they point out that transition care is relatively cheap in the larger scheme of things—often less expensive than employers or insurers assume. The city of San Francisco charged individuals an additional $1.70 a month after adding trans-inclusive care for all of its employees in 2001, only to find itself with a surplus of over $4.1 million three years later. Gender confirming surgery can be expensive for individuals—Newberry paid $17,500—but that's pocket change compared to more commonly performed procedures (open-heart surgeries can cost anywhere from $20,000 to $100,000, tracheostomies are about $200,000, and organ transplants start there and spiral upwards) and not all transgender people want it.
Hormones, on the other hand, are cheap, and many insurers already cover hormone prescriptions—in fact, providers give cisgender, menopausal women precisely the same estrogen they give to people undergoing male-to-female gender transitioning.
But the last few years of policy change have largely applied to private, employer-based insurance plans, which transgender people are disproportionately less likely to have. Nineteen percent of transgender people lack any sort of insurance, compared to 15 percent nationwide, according to the National Transgender Discrimination Survey Report on Health and Health Care, published in 2010. Eleven percent of survey respondents were on some form of public insurance (Medicaid, Medicare, military, or other public insurance) and 40 percent have insurance tied to an employer, compared to 59.5 percent of the general U.S. population. The survey also notes that transgender people were more likely than other sexual minorities to be without insurance.
“I'm really, really lucky that I had any savings built up,” says shatz, whose mother's insurance policy wouldn't cover transitioning care. shatz now works as the trans justice manager for Basic Rights Oregon, the state’s largest LGBT rights group. “That personal experience makes me really passionate, because I am one of the best case scenarios.”
“It's like running up against polite brick walls,” Newberry says of her experience fighting with Kaiser and Medicare. (She's written a poem of the same name, published in a chapbook called Butterfly a Rose.)
A letter to CMS spurred the agency to announce that they might consider covering gender confirming surgery earlier this year—only to announce in April that they were closing the book on the subject. (Medicaid plans are administered by the state.) But everyone Newberry has spoken to has been “nice,” she says, and the providers she's worked with at Kaiser—though she had surgery at an outpatient clinic in Lake Oswego, a suburb of Portland—have been professional and kind. “It's just this frustrating refusal to grapple with the real issue.”
THE CURRENT FIGHT TO get insurers to cover gender transitioning is a far cry from the days when trans people in the U.S. sought “sexual reassignment surgery” (a term still used in medical circles, if less frequently by activists) either overseas—the first documented gender confirming surgery was performed in Germany at the Institute for Sexual Sciences in 1931—or at clinics found through a kind of whisper system. In the 1960s and ‘70s, clinics treating transgender people proliferated throughout the U.S., mostly at university medical centers.
Historian Susan Stryker calls this the “big science” period in transgender history, kicked off by Christine Jorgensen's famous transition in 1952, when issues of transgender identity were discussed largely in terms of medical possibility and scientific research. Despite the historic relationship between academic medicine and transgender patients, only three in five medical students receives any education about LGBT issues, according to a survey published in the Journal of the American Medical Association. Not surprisingly, half of those who responded to the National Transgender Discrimination Survey said they had to educate their providers about their identities.
Janis Booth, the former registered nurse, says her experiences accessing routine care post-transition have largely been positive, if nerve-wracking, despite her comfort interacting with the medical system (her primary care physician, for instance, is a former colleague she has known for years).
But she herself had precious little exposure to transgender phenomena except on “those stupid sensational TV shows, like Jerry Springer” and memories of reading about Jorgensen in the newspapers as a child. When she worked in the night shift at the ER, male patients wearing female undergarments were not uncommon—“I saw about one a month”—which stood out because of her own history of intermittent, covert cross-dressing. But she never met or interacted with someone she knew to be transgender until she started researching the phenomena online.
Transitioning was horrible at first, Booth says. She had cross-dressed privately, off and on, for years, but doing it in public was terrifying. Once the transition was complete, though, she felt better than she ever had.
“It's a very horrible experience, a horrible place to be in life, where nobody, nobody, not even your mother knows you—and nobody can,” Booth says. “To go through my transition and finally be at a point where that's no longer true for me, it's like the sun coming up.”