- Transgender and nonbinary people are turning to friends, community Facebook pages, and “grey market” pharmacies to find hormones during the coronavirus pandemic.
- The spread of the virus means many people have lost income, health insurance, or easy access to their doctor’s office, all of which has made it more difficult for some to access hormone-replacement therapy.
- HRT is a treatment commonly used for treating gender dysphoria – when a person feels as if their body doesn’t match their gender identity.
- While the pandemic has highlighted the practice, hormone sharing isn’t new. Many transgender and nonbinary people have long lacked access to gender-affirming care because of systemic factors such as classism, racism, and medical transphobia.
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Evelyn was growing nervous as she watched her supply of spironolactone dwindle while the city of Boston, where she lives, started its coronavirus lockdown in mid-March.
Evelyn, 21, takes spiro as part of her hormone-replacement therapy to treat gender dysphoria, which happens when a person feels their body doesn’t match their gender identity. She’s had a steady routine since starting on hormones last September; every three months she goes to Planned Parenthood for a checkup and a new prescription.
But by March 15 she was getting increasingly anxious. She’s found it hard to find a good doctor who treats transgender patients, let alone one accustomed to video visits.
Evelyn started to worry about withdrawal symptoms from her HRT, like fat redistribution, hair growth, and mood swings.
A week and a half after lockdown, she was out of spiro and, with her appointments cancelled indefinitely, she had no idea when she would next be able to fill her prescription.
“It was rough,” Evelyn said. “It’s always anxiety-inducing to run out of a medication that you know has very significant effects on your body.”
With few options and no time, Evelyn turned to a friend for help.
Her friend had an access supply of spironolactone she was willing to part with. It was expired and a lower dosage but Evelyn said she could make it work until she could schedule an appointment with her doctor.
“It’s a beggars-can’t-be-choosers thing right now,” Evelyn said. “I’ll take what I can get.”
Evelyn was eventually able to schedule a video appointment four days later with her doctor, who wired her hormone prescription to her pharmacy. But for many transgender and nonbinary people, unofficial pathways to obtaining hormones like friends, community social-media pages, and unregulated grey-market pharmacies have become the only options during the pandemic.
The coronavirus has spurred the creation of hormone-sharing lists
Since the lockdowns came into effect across the US, mutual-aid networks for queer and transgender people have popped up, including grocery delivery and resources for people with lost incomes.
Among them are efforts geared toward redistributing hormones and needles to those in need, including hormone-sharing Google Docs, and grey-market pharmacies, which buy and sell unregulated hormones.
The Google Docs are particularly useful for finding testosterone solution, which is tightly regulated and expensive, and clean needles, which aren’t so easy to buy, and can be pricey too.
Testosterone can cost between $US40 and $US90 for a two-month supply (a 10 ml bottle of 200 mg/ml solution) without insurance. The expenses quickly add up when you consider the costs of gender-affirming clothing like binders (upwards of $US35), prosthetics (hundreds of dollars), and syringes to administer the testosterone, which can cost between $US15 and $US20 for a 100-count box depending on the supplier.
Free needle exchanges exist, but the pandemic has caused many to shutter. If people opt for AndroGel, the topical form of testosterone, a month’s supply can cost between $US30 and $US80 without insurance.
People further along in their transition may not need to take hormones as regularly, so some are sharing their excess
Syd, a 23-year-old living in Berkeley, California, was browsing through lists of queer coronavirus mutual-aid pages when they stumbled upon an anonymous two-page Google spreadsheet titled “HORMONE SHARE.” One page of the sheet is for people to list the specific hormones or equipment they need; the other is for people to list items they have to share.
Syd felt compelled to put their information on the list because they had an excess supply of “T” (testosterone) to share.
Syd, who uses they/them pronouns, has gotten to a point in their transition where they don’t take testosterone as regularly as they did when they started on HRT a few years ago. Their body has gone through the physical changes they wanted. Rather than taking their prescribed .5 mL every week, Syd takes .5mL about every two weeks to maintain the physical changes.
“I don’t really need it that much, and someone else can use this. I can’t get the intended effect that I want from hormones, and I also just really hate injections,” Syd told Insider. “For the time being I assume I’m still going to be able to get in touch with my doctor, so it won’t be an issue for me.”
A few days after posting on the spreadsheet, Syd got an email from an unfamiliar address. The sender said he’d seen their listing and was in need of testosterone because his usual HRT clinic in Philadelphia was not responding to phone calls. The sender was scared that he’d start to see side effects from being off HRT too long, like the return of his period.
Breaking a nervous sweat while walking to the post office, Syd wondered about the legal consequences of shipping hormones across the country, and what they would say if post office workers asked about the contents of their padded envelope.
Sharing hormones and needles is a legal grey area
Most testosterone medications are classified as steroids under the Controlled Substances Act and the Anabolic Steroid Control Act of 1990, so they are illegal to sell over the counter. But handing out hormones for free, though not recommended by doctors, doesn’t break any laws.
It is not illegal to share needles if there is no reason to believe that they would be used to inject illicit drugs.
According to Harper Jean Tobin, Director of Policy for the National Centre for Transgender Equality, while people should not take medications that aren’t prescribed to them, hormone exchanges and grey-market pharmacies aren’t new.
“We strongly recommend that people should only take medications prescribed by their doctor, at the dosages prescribed,” Tobin told Insider. “But like anyone else with regular prescriptions, it’s not unheard of for roommates, friends, or partners on the same medication to trade a few doses until they can get to the pharmacy again.”
Syd felt compelled to share their hormones because of the deep impact dysphoria can have on the mental health of transgender and nonbinary people. Studies have linked dysphoria to depression and anxiety and significantly increased risks of substance abuse and suicide.
“A lot of people who don’t have dysphoria may not see it as essential, but I know that, for some people, it really makes them feel a lot more OK existing in their body,” Syd said. “For some people it really is necessary to be taking it all the time. If they miss it, it can mean certain things can start to come back like menstruation, or facial hair growth, fat redistribution.”
Some have turned to grey-market pharmacies where people can buy hormones
Estradiol and spironolactone, HRT medications typically used by transgender and nonbinary people assigned male at birth, can legally be sold online.
While they can be found on list-shares, people also can buy them online via a network of grey-market pharmacies, shipping medication that is not illegal to sell, but medical professionals would not recommend taking it without a doctor’s approval.
That’s what Callie, a 24-year-old in the United Kingdom, uses to get progesterone – a hormone that can stimulate breast development and decrease testosterone production in people assigned male at birth.
Callie has always used a mixture of official and unofficial sources to access her hormones because of the legal grey area some of her medications exist in.
“I take finasteride and estradiol, both of which are prescribed by a UK doctor with GenderGP, a private trans healthcare service,” Callie told Insider. “However, I also take progesterone, which I obtain from the grey market because it cannot be prescribed in the UK but has been very beneficial to me.”
These markets carry clear risks – it’s not as clear where your medication has come from – but they are generally more reliable and cheaper than official channels. There’s also a tight-knit community of people on Twitter and subreddit /r/TransDIY who discuss the safest ways to get DIY HRT, and which online pharmacies have worked for them.
A 5 ml bottle of depo-estradiol, an injectable hormone, costs upwards of $US120 for a two-month supply. There is a generic version, estradiol cypionate, which costs between $US40 and $US100 for the same amount, but it needs to be taken more often, so runs out quicker, and there are often shortages.
Soon, Callie may have to turn fully to grey-market sources because she has been unable to get an appointment with her doctor for another hormone prescription.
“I’m running out very soon and so far my doctor hasn’t responded to communication, so potentially very soon I might be turning to unofficial channels,” Callie said.
These unofficial channels have existed for years to help trans and nonbinary people get around red tape
The pandemic has made hormone and needle sharing more visible, but it isn’t new.
Access to gender-affirming care – whether it’s surgery or access to medication – has never been an easy proposition for transgender and nonbinary people.
Medical insurance companies refused to cover gender-affirming care for decades and many primary-care physicians were unwilling to provide HRT, a medication also prescribed for menopause, to transgender and nonbinary patients because medical guidelines had not changed to include them.
Until 2017, “gender identity disorder” was categorised as a mental disorder in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders. And it wasn’t until 2018 that the World Health Organisation removed “transsexualism” the International Classification of Diseases – a move that, the WHO conceded, would allow for better “access to necessary health interventions.”
Still, access to gender-affirming care like HRT through official channels like a primary-care provider is fairly new, and therefore challenging. The pandemic has brought in even more obstacles.
The pandemic may force more people to rely on hormone trading and grey markets
Job losses, delayed paychecks, and loss of health insurance have stripped many transgender and nonbinary people of their access to HRT, or their means to pay the full cost or the co-pay, which can range from $US10 to $US85 a month, on average.
Evelyn, the 21-year-old from Boston, still has access to hormones through her insurance, but she’s still concerned about how she will continue to afford the co-pay for her HRT prescriptions without income. Like many Americans, she lost her job because of the economic downturn caused by the pandemic.
“The big financial problem is I don’t have income anymore and I’m sure a lot of people don’t have income anymore,” Evelyn said. “Even if costs don’t change, I’m working with less and less total funds as time goes on.”
Are you affected by limited access to hormones during the lockdown and want to share your story? Email [email protected]