Erin Reed was just 13 years old when she first began researching gender transition. It took her another 18 years to transition publicly—and access to treatment, or lack thereof, played a big role in the wait.
As a teen, Reed found that in order to be prescribed hormone therapy, she would need letters from “gender specialists” and she would have to present as a girl for months (or even longer) prior to her first dose. “It just didn’t seem like something I could access,” she told Rewire.News. Transitioning without hormones terrified Reed—although many trans people do transition non-medically, she didn’t want to—so she didn’t try at all.
“There was no way I could present as female for a year before receiving treatment. The whole process just seemed really daunting to me,” Reed said.
It wasn’t until adulthood that Reed, now the digital director of the progressive news site Shareblue, discovered informed consent (IC) clinics, where trans people can access hormones without jumping through the various hoops. Reed booked an appointment at one a few hours from her home in Washington, D.C., and began hormone replacement therapy a few months ago. But after her challenging road to finding the resources she needed, Reed felt inspired to help others. So she created what has become one of the largest repositories of information on IC clinics in the country: a map of clinics all over the United States.
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Conventional medical wisdom holds that hormone therapy treatment should involve a long series of complex steps. Rather than having to consult with a mental health professional and present as their gender for a year, patients at informed consent clinics are educated about the impact of the drugs they are interested in starting therapy with. If they are determined to be of “sound mind” and fully able to consent, they can sign a form and begin treatment. Patients, who are often still in the early stages of hormone therapy at IC clinics, are then monitored carefully; their hormone levels are checked every few months.
For Reed, this was key: “You can just start. That just blew my mind. I wished I could have done it 10 or 15 years ago. Knowing that was an option gave me the confidence to transition.”
Informed consent doesn’t mean that trans people are receiving medication with any less oversight than patients being prescribed any other non-addictive drug. IC clinics just operate the way standard treatment processes should, allowing doctors to treat their patients as they see fit and giving patients the right to advocate for themselves. The clinics vary in structure; some are independent facilities, and others, like the transgender health program at Boston’s Fenway Health and the trans health clinic at the University of California, San Francisco (UCSF), are operated by larger medical systems. Some Planned Parenthood clinics offer IC hormone treatment, but not all of them.
A study of 12 informed consent clinics conducted by a UCSF medical professor found “minimal risk of regret and no known cases of malpractice suits.” UCSF also noted that most providers are already familiar with the hormones used for gender-affirming hormone therapy because the medications are used for conditions ranging from male pattern baldness to menopause.
Some people have criticized IC clinics for potentially treating patients who aren’t actually trans or who later “change their minds.” Statistically, however, that seems to be incredibly rare. A 2018 study of surgeons that had treated more than 22,000 transgender patients in total found that, between them, the providers could only recall 62 patients that had ever expressed regret about transitioning.
“I always hear that the big concern is that: ‘What if you are letting people through that are just going to de-transition, or what if you are letting people through who aren’t transgender?’ I can tell you from my personal life and from everyone I have spoken to .… If you’re looking into transitioning, chances are you’re transgender,” Reed said.
Generally speaking, patients have to be 18 to access hormone therapy and related treatment through informed consent, although advocates are pushing for that limitation to be dropped in certain cases. For adult trans folks, though, IC can streamline the process significantly.
Considering all of this, Reed decided to share the word about informed consent. “I spent probably 20 to 25 straight hours in front of my laptop, just looking up clinics,” she explained. Reed scoured the internet and also crowdsourced info on clinics from other trans folks, asking people to send in the names and locations of clinics they had used. Once she found them, Reed compiled the clinics into a map she shared on social media, which has now been viewed more than 88,000 times.
Reed’s map shows a serious dearth of informed consent clinics in certain areas of the country, like Montana, North and South Dakota, and Wyoming. Overall, the Rocky Mountain, Southeast, and Midwest regions have far fewer clinics than the Northeast and the West Coast. Clinics are also concentrated near major metropolitan areas.
Informed consent clinics cannot necessarily guarantee that a patient’s medication will be covered by their insurance; Reed is still paying out pocket for hers because of the slow process of approval through Kaiser.
Informed consent isn’t a complete or perfect solution, but the IC map has still been a powerful tool for trans people.
“I have gotten private messages from people saying stuff like that: that they wouldn’t have been able to do it without the map,” Reed said. “And I wouldn’t have been able to transition without [knowing about informed consent], so I understand.”
Reed hopes that her map will not only be a resource for other trans people, but potentially serve as an example for policymakers, health-care practitioners, and other decision-makers—both trans and cis—about the importance of informed consent. Ideally, Reed said, projects like hers will eventually be replicated by others, taking some of the pressure off of trans people to constantly produce their own resources in the absence of information.
“If we didn’t have to take all the burden on ourselves, that would be great,” she said.
For many trans people, access to hormone therapy is an important aspect of being able to live on their own terms and feel comfortable in their bodies. Being able to begin treatment without the trauma and expense of being forced to see gender specialists can be radically liberating.
“Moving from transition being a theoretical thing, to an actual concrete thing, being able to make a plan, knowing that there is a physical place you can go, and seeing it on the map—potentially not far from you—I think it gives people a little bit of courage to be themselves,” Reed said.