Ignored by doctors, transgender people turn to DIY treatments
The health care system has a history of stigmatizing trans identity. Until recently, the World Health Organization and the American Psychiatric Association even considered it a mental disorder. And according to a 2015 study from researchers at the Lesbian, Gay, Bisexual, and Transgender Medical Education Research Group at the Stanford University School of Medicine, less than 35 percent of medical schools teach coursework related to transgender hormone therapy and surgery.
On June 12, the administration of President Donald J. Trump finalized a rule removing protections that had been put in place in 2016 to bar discrimination against transgender people by health care providers. Just three days later, the U.S. Supreme Court decided that the 1964 law that bans discrimination in the workplace based on sex, race, national origin, and religion also applies to sexual orientation and gender identity. While not directly touching on the new health care rule, some experts think the Supreme Court's decision may make legal challenges to it more likely to succeed.
Trans-friendly health care providers are rare, and booking an appointment can stretch out over many weeks. In England, for example, the average wait time from the referral to the first appointment is 18 months, according to an investigation by the BBC. Even those with hormone prescriptions face hurdles to get them filled. Scheim, who lived in Canada until recently, knows this firsthand. “As someone who just moved to the U.S., I’m keenly aware of the hoops one has to jump through,” he says.
“Even if it's theoretically possible to get a hormone prescription, and get it filled, and get it paid for, at a certain point people are going to want to go outside the system,” Scheim says. Navigating bureaucracy, being incorrectly identified — or misgendered — and facing outright transphobia from health care providers, he adds, “can just become too much for folks.”
Many of the health care barriers trans people face are amplified when it comes to surgery. Bottom surgery for trans feminine people, for example, costs about $25,000 and isn’t covered by most insurance plans in the U.S.
There are some signs that at least parts of the medical community have been rethinking their stance on transgender patients. “Clearly the medical professionals didn’t do the right thing. But things are changing now,” says Antonio Metastasio, a psychiatrist at the Camden and Islington NHS Foundation Trust in the U.K.
The Association of American Medical Colleges, for example, released their first curriculum guidelines for treating LGBT patients in 2014. In 2018, the American Academy of Pediatrics released a policy statement on transgender youth, encouraging gender-affirming models of treatment. And in 2019, the American College of Physicians released guidelines for primary care physicians on serving transgender patients.
The World Professional Association for Transgender Health (WPATH) — the international authority on transgender health care, according to a summary of clinical evidence on gender reassignment surgery prepared for the Centers for Medicare and Medicaid Services — has also changed its Standards of Care to make access to hormones easier. Previously, WPATH recommended that before a person could receive hormone treatment, they had to have “persistent, well-documented gender dysphoria,” as well as documented, real-life experiences covering at least three months. The newest guidelines, published in 2012, nix these stringent requirements, although they still strongly recommend mental health evaluations before allowing trans people to access gender-affirming medical care and require a referral letter from a mental health professional.
But the shift hasn’t stopped trans people from seeking DIY treatments.
Before Christine moved to Cape Cod, she secured about two weeks of estrogen from a trans friend. But she soon decided to end the DIY treatment and went off hormones for good. “I can only accept help for something like that for so long before I start to feel bad about it,” she says. “At that point, it was just like I gave up.”
But she didn’t give up for long. After the move, Christine tried to get back on hormones through a legitimate health care provider. First, she considered visiting a Planned Parenthood, but the closest one she could find was at least two hours away and she worried her old car couldn’t make the journey. Then she visited a local women’s health clinic. But she says they turned her away, refused to recognize her gender, and wouldn’t direct her to another provider or clinic. Instead of advice, Christine says, “I got ‘no, goodbye.’”
Left with few options and not wanting to take the risks of further DIY treatment, Christine accepted that she would be off hormones for the foreseeable future.
Many trans folks, however, start or extend their hormone use by turning to drugs that aren’t meant for transitioning, like birth control pills. Others buy hormones online, skirting the law to order from overseas pharmacies without a prescription. To figure out how best to take the drugs, people determine dosages from research online — they read academic literature, technical standards written for health care providers, or advice in blog posts and public forums like Reddit.
Then, they medicate themselves.
Metastasio is one of the few scientists who have studied the practice. He learned about it in 2014, when one of his transgender patients admitted they were taking non-prescribed hormones. Metastasio asked his colleagues if they’d heard similar stories, but none had. So he started asking all his trans patients about DIY hormones and tracked those who were involved in the practice, ultimately publishing a report of seven case studies in 2018.
