Two years ago at Burning Man, Andrea tripped on ayahuasca and had visions of herself as a woman in a past life. At the time, Andrea, a 33-year-old transgender woman, identified as a man, but she had struggled with gender dysphoria since high school. “Growing up I had no transgender role models, and there was nobody to tell me that what I felt was something anyone else had,” she says. “I was unhappy with how I was living, and I really wished I had been born with a female body.”
After meeting a few transgender women at the famed music and arts festival, Andrea decided to pursue her own transition. But when she sought out feminizing hormones through clinics around her home in Philadelphia, she ran into lengthy waiting lists and high costs. So she decided to experiment on her own. She ordered Estradiol, a commonly prescribed form of estrogen, and Spironolactone, a testosterone blocker traditionally prescribed to transgender women, from an online pharmacy without a prescription.
Andrea’s decision to manage her own transition outside of a doctor’s care is common. With a lack of transgender-related services across the country, as well as discrimination from medical professionals and insurance companies, many transgender patients are conducting their own hormone replacement therapy, a regiment of medications meant to help them develop some of the secondary sexual characteristics of their gender identity.
Online forums and blogs devoted to DIY HRT—do-it-yourself hormone replacement therapy—help transgender people access drugs that are typically meant to be guarded by a doctor’s prescription and certified pharmacies. The websites’ members recommend online pharmacies of dubious legality and help each other navigate shipping and possessing such drugs. They monitor their own blood results and manage each other’s side-effects—all without the oversight of a doctor. (Because of the legal questions around these practices, we agreed not to identify the full names of some individuals we spoke to for this story.)
For Andrea, the do-it-yourself method was only a stepping-stone towards a doctor-managed approach. But she may return to DIY to retain the independence and control it gave her, she says. “It's not fun to depend on having sympathetic doctors around (or money) every two months to refill prescriptions.”
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“My initial goal was to try a few weeks’ supply and see how it felt from there,” says Adam, a member of r/TransDIY, a discussion page—or subreddit—on the website Reddit. Without insurance coverage to affordably (and legally) pursue a transition, however, Adam ended up ordering hormones for a number of months, and monitored the results through close observation of lab results and online research into the side effects of the different hormones. r/TransDIY links users to pharmacies, labs, and the clinical guidelines of the Endocrine Society. Numerous posts detail “Amy’s Quick-And-Dirty Guide To DIY” and “Ellie’s Awesome DIY Guide,” offering advice on medications and proper dosages. “I am not a doctor, and this is not medical advice,” clarifies one tutorial. “This is all stuff I've pieced together from a combination of personal experience, reading other people's posts, and discovering medical literature.”
Estradiol and Spironolactone are the most popular drugs for transgender women to increase estrogen and decrease testosterone, respectively, which help develop softer skin, feminine fat distribution in the face and body, and breasts. Transgender men are typically prescribed Depo-Testosterone, regular consumption of which helps them develop muscle, body hair, and a deeper voice. While Estradiol and Spironolactone can be acquired at numerous online pharmacies, most forms of testosterone are regulated as a steroid by both the Controlled Substances Act and the Anabolic Steroid Control Act of 1990—meaning most DIYers are transgender women.
Katherine Sterling, a woman who sought hormones online, describes how it’s “incredibly hard” to access them through traditional channels. After obtaining insurance that would cover HRT, she “kept getting the same kinds of issues,” she wrote to me in an email. “Either they wouldn't work with my insurance (and hence declined to have me as a patient), didn't know enough about transgender HRT to even consider me, kept bouncing me around to different clinics, or just told me to see a therapist or anything else—because they didn't know what I needed.” Months after pursuing HRT through doctors, Katherine says she found herself stuck with off-prescription medications she obtained online because it was her only option. “At times I would literally be brought to tears over being rejected so much.”
According to Joshua Safer, the medical director of Boston University’s Center for Transgender Medicine and Surgery, Katherine’s story is common. “The big roadblocks are lack of providers who have been willing to provide the treatment in the first place and lack of financial support,” he says. “It is still the case in much of the country … that transgender individuals will reach out to their existing and logical providers and are told ‘I don’t do that. I won’t prescribe you those hormones. I don’t feel comfortable.’”
Safer believes this hesitance is less a matter of malice than it is a matter of ignorance. Still, he sees discrimination as an “enormous” problem within the medical community. He admitted to hearing “snide jokes” and “honest, hostile opinions” of transgender patients from his colleagues. “There are still providers with outright hostility,” he says. “I have a patient who reported coming in for a broken limb to an emergency room and being sent out of the emergency room because the doctors determined they were trans—which is entirely unrelated to the situation.”
One poster on the DIY subreddit told me that a doctor turned them down for HRT to avoid being “legally responsible” for the transition. Another reflected on living in the Southern United States, “where trans healthcare is nonexistent and 9 out of 10 doctors are overtly hostile and antagonist [sic] toward trans patients.” In a 2011 study by the National Center for Transgender Equality and the National Gay & Lesbian Task Force, 28 percent of respondents said they avoided medical care because of discrimination from a medical professional, and 19 percent reported being refused medical care because of their gender identity. Fifty percent said they had to teach their doctor about appropriate care—one reason some people may feel confident enough to manage their own transition.
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A provision in the Affordable Care Act outlaws discrimination against patients on the basis of gender, a rule that Lambda Legal—an LGBT civil-rights organization that regularly takes up cases of discrimination—has argued extends to transgender individuals, since HRT is typically covered for women going through menopause. “When people need to have access to care and they can’t get it, they use any means possible,” says Dru Levasseur, Lambda’s Transgender Rights Project Director.
Some states, like New York and Massachusetts, have begun initiatives to close these gaps. But for now, questionable pharmacies are filling the void left open by the health care system. Websites like InHousePharmacy, All Day Chemist, and Quality Health, Inc. offer by-mail delivery of a vast number of drugs that typically require a prescription. Taking advantage of dense international shipping and drug laws, these sites sell hormones and many other medications not listed as controlled substances by the Drug Enforcement Administration—though, as The Washington Post has reported, Deep Web traffickers can help you with that, too.
Earlier this year, the Center for Safe Internet Pharmacies surveyed 30,000 online drug-sellers, and found that 96 percent existed outside of regulations or licenses typically enforced by the Food and Drug Administration, the National Association of Boards of Pharmacies, and the DEA. “These rogue sites often sell unapproved drugs, drugs that contain the wrong active ingredient, drugs that may contain too much or too little of the active ingredient, or drugs that contain dangerous ingredients,” warns the FDA.
According to Libby Baney, executive director of the Alliance for Safe Online Pharmacies* and a lawyer specializing in the regulation of the healthcare supply chain, patients are rolling the dice when they order prescription medications or controlled substances through most online pharmacies. “One in two of these pharmacies are selling counterfeit medicine,” she says, citing a report by the World Health Organization.
Even if the drugs patients do obtain are legitimate and not counterfeit, many of these pharmacies and manufacturers do not have the same safety standards as the FDA and the U.S. government, she adds, citing India, Russia, and Pakistan as some of the more popular pharmacy locations. (All Day Chemist, an online pharmacy based in India, even has a strict “as-is” policy, meaning they do not claim 100-percent certainty about the products they sell.) Hormones manufactured and distributed from abroad might be contaminated, or kept out of cold storage, which is necessary to keep them from degrading. “Even if you’re lucky enough not to get a counterfeit, you don’t know the quality of the medicine you get,” Baney says.
Simply taking hormones poses health risks, too. Safer, the Boston University professor, notes that estrogen contributes to blood clots and can increase one's chances of stroke or heart disease, as well as put extra strain on the liver. Spironolactone, the most popular testosterone blocker prescribed to transgender women, is a “potassium-sparing diuretic,” meaning a patient with existing kidney problems might have to restrict their dose or not take the drug at all.
The moderators of r/asktransgender, the largest trans-related subreddit, with nearly 25,000 members, have made clear their position against DIY HRT. “I know there are many of us who do not have access to knowledgeable doctors or have unsupportive parents. And there are many of us who have successfully gone down the road of DIY,” a moderator on the forum wrote. “However, please bear in mind that there ARE risks, and you should always try to transition under the support and care of a medical professional.”
While r/asktransgender doesn’t prohibit all talk of DIY hormones, other sites ban users helping each other administer their own HRT. Susan’s Place, one of the largest and oldest transgender forums on the web, explicitly prohibits any discussion of non-prescription hormones and even goes so far as to block discussion about “natural” hormone methods (some transgender women will pursue a diet heavy in phytoestrogens in order to enhance certain feminine characteristics of their body).
The Susan’s Place rule could be to avoid liability for the forum and its users, but individuals are rarely prosecuted for ordering off-prescription drugs. The pharmacies that sell them are conducting illegal activity under the federal regulations, but according to Baney, the Alliance for Safe Online Pharmacies lawyer, “it’s unlikely an individual buying online is going to be prosecuted for that. The burden is on the drug seller that’s selling online—and the entities that facilitate that.” She mentions a $500 million settlement between the Justice Department and Google, which failed to verify the authenticity of online pharmacies using its ad network. Similarly, in 2014, FedEx faced a $1.4 billion fine for conspiring to deliver prescription drugs from illicit online pharmacies to patients without a prescription.
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In many ways, the people braving the legal landscape to obtain HRT resemble the famous “buyers clubs” of the AIDS crisis. When a supposedly lagging FDA and medical community made drugs hard to come by for sufferers of HIV or AIDS, local groups began harvesting experimental AIDS drugs from countries with less regulation and distributing them to eager and desperate patients. One such group, founded by Ron Woodroof in 1989, was portrayed in the Oscar-winning movie Dallas Buyer’s Club. Another, the People With AIDS Health Group in New York City, was profiled by journalist David France in the 2012 documentary How To Survive A Plague.
Like then, the illicit drug market has picked up the pieces where the medical system has failed those who want more legitimate care. Some, like Andrea, are happy with the experimental freedom given to them when they control their own gender identity down to the medical options in front of them. But others, like Adam and Katherine, would be delighted to find easy and affordable access to health care through safer and more verified channels.
Given the disastrously high suicide rate among transgender people, many thank their DIY hormones for their survival. “I started DIY when I lived in a place where healthcare was inaccessible,” says one user of the /r/asktransgender subreddit. “I eventually moved to a place that had legit health care options, and told them that I was going to keep medding whether they helped me or not, so I got a prescription right away. I would not be alive right now if I hadn’t started when I did.”
* This article originally misstated the name of the alliance as the Association for Safe Online Pharmacies. We regret the error.