Taking Charge: How Many Trans Youth Are Trumping the Medical System

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Stronger Hospital, picture above, is one of the only places in Chicago where trans youth can get assistance transitioning at an affordable cost as an alternative to self-medding. Photo courtesy of cookcountyhhs.org

From the Chicago Bureau: 

For nearly two years, the then-17-year-old lived from package to package. They arrived, unlabeled, at friends’ houses, P.O. boxes and community resource centers, following her from city to city as she struggled to find permanent residence.

Each was small, containing only a few vials of pills, but their significance was monumental. Concealed within them were illegally purchased, non-prescription estrogen doses and androgen blockers — the magic ingredients that would give Amelia, a transgender woman whose real name is concealed here for legal reasons, the body she always wanted.

Do-it-yourself hormone treatment, or “self-medding,” as Amelia calls it, is an increasingly popular method by which transgender people acquire the hormones necessary for gender transition. It’s an alternative to professional medical care with its excessive expenses and deficiency of trans-knowledgeable providers. DIY, as many trans forums and online guidebooks see it, is the next-best solution despite associated health risks like blood clots, high blood pressure and liver damage.

Amelia, now 22 and living as a female trans activist in Chicago, called the self-medding issue a “big point of contention between the trans community and the medical community” because of a lack of understanding between the two groups.

“They don’t see all the hoops we’re forced to jump through as being really restrictive or bad things or in any way negatively impacting us,” she said. “So when they see us self-medding, they see it as us putting ourselves in unnecessary danger, when really it’s more like a response to inadequacies of the medical structure.”

Gatekeepers to Care

The sex hormones commonly used for transition, namely estrogen, testosterone and a variety of androgen blockers, are classified as prescription drugs by the U.S Food and Drug Administration. As such, acquiring them without a prescription from an online pharmacy or a street dealer is against the law, said Stephen King, FDA spokesperson.

Even so, transgender people sometimes pursue illegal hormones in lieu of accessible, affordable medical care.

A 2008 study in the American Journal of Public Health found that only 30 to 40 percent of transgender persons nationally utilize regular health care. When 100 trans subjects in New York City were asked why, they cited a lack of access to a provider with knowledge of trans issues (32 percent), followed by access to a transgender-friendly provider (30 percent), cost (29 percent) and access to a specialist (28 percent).

The study estimated the prevalence of unsupervised hormones to be more than 29 percent.

Rob Garufolo, Director of Adolescent Health at the Robert and Anne Lurie Children’s Hospital, gives a speech at the University of Minnesota about transgender health. He has worked with many self-medding adolescents to help them transition in a healthy way. Photo courtesy of the University of Minnesota.

Dr. Rob Garofalo (pictured at left), director of the Center for Gender, Sexuality and HIV Prevention at the Ann & Robert H. Lurie Children’s Hospital of Chicago, often works with teens and young adults who formerly used non-prescription hormones. Although he discourages DIY and steers clients toward more thoroughly tested methods, he understands the demand for self medication given the gap in care.

“If I had to grade the medical system, I’d probably give it a C-minus in terms of its readiness to help the transgender community,” he said. “There are a lot of institutional barriers … a lack of scientific evidence to support the safety and the efficacy of what we’re doing, the general access things. The ball is rolling in the right direction, but it’s rolling slowly and it’s requiring a lot of pushing.”

For some, the ball isn’t rolling fast enough, especially when the prescriptions themselves are difficult to acquire.

The World Professional Association for Transgender Health (WPATH) Standards of Care  document states that hormone therapy generally requires one letter of approval from a mental health physician, and genital surgery requires two. Acquiring such letters is no easy task, according to many of the trans community.

Amelia remembers her college years in Philadelphia as a series of referrals from one therapist to another, having already experimented with hormones and not getting real satisfaction from any of the therpists in terms of the advice or care she was given. She ended up on a six-month waiting list for an endocrinologist who, she said, turned out to be largely in the dark about trans care.

Meanwhile, she was already self-medding. She said she saw the many steps of supervised transition not as precautionary measures, but as a form of discrimination and professional gatekeeping.

“It’s this really formalized process that ultimately is centered around not trusting trans people for transitioning,” she said. “There’s still this myth around trans people who transition and then regret it, which is such a tiny fraction of the population which is already tiny.”

A USA Today story estimated some 5 percent of people who make the change end up regretting it, but the numbers are tough to pin down.

Yet some trans-sensitive providers contend that the formalized process exists for good reason. Dr. Margot Bell, director of Adolescent Medicine at the John H. Stroger Hospital of Cook County and founder of the recently opened Same-Gender Loving (SGL) clinic, which was created to serve uninsured LGBT youth, said she won’t prescribe county-subsidized hormones from the hospital’s pharmacy until she is sure the client is ready to transition.

Dr. Margot Bell is one of few physicians nationwide providing trans-sensitive medical care. She recently founded the Same Gender Loving (SGL) clinic in Stroger Hospital, where she can provide sex hormones for youth she feels are ready to transition. Photo courtesy of cookcountyhhs.org

Reaching a level of certainty, for Bell, entails evaluation of a patient’s medical and mental health history, a physical exam, as well as thorough inquiries into what the patient knows about transition, whether or not they’ve taken street hormones or other drugs, their sexual history and how they envision their post-transition body.

In her work, Bell said, she has had a few clients who transitioned and were unhappy with their new bodies, which is part of why she takes the process slowly, often over several months. She has worked with youth taking illegal hormones and said the pace and dosage of a physician-monitored prescription process may be contributing factors to the prevalence of self-medication.

“It happens very frequently,” Bell said. “Not necessarily because they can’t get care, but because they want more of the medication than the doctor will prescribe. Because they want to transition as fast as possible, they look for other ways to augment that transition.”

Though the current pace of treatment seems slow to some, it has come leaps and bounds in the past decade, said Emma Joy Jampole, a 57-year-old assistant professor at Northwestern University who first attempted transition in 1975. Jampole always knew she belonged in a female body, she said, but being trans was almost unheard of and therapists denied her hormones for so long that she eventually gave up.

“They thought I was trans, but they also thought I was attracted to women, and said ‘If we allow you to transition we’ll be taking you from being straight in some way to being gay, and we’re not in the business of making homosexuals.’”

After living in what she felt was the wrong body for three decades, Jampole finally underwent hormone therapy and so-called bottom surgery, which can include the changing genitals or or other alterations, in 2009. Her long journey puts today’s “rolling ball” in perspective. But current DIY-ers, especially youth, are still not satisfied with the progress.

“Patience is not in rich supply for many of these young people,” Garofalo said. “They’ve been waiting their whole lives to be who they want to be, and to face any sort of obstacle is just so painful and it feels so oppressive. I feel like I’m an oppressor sometimes. I wish I could wave a magic wand and make it all better.”

High-Speed Delivery

The promotion of illegal hormones as the ‘magic wand’ for the new generation takes place mainly online, with all the virtual marketplace’s advantages of instant transactions, discreet delivery and anonymity of customer and vendor relations.

Anyone with a Yahoo! profile can join TsDoItYourself Hormones, a forum that currently serves more than 18,000 members worldwide. Within minutes of signing up, members receive one email containing the URLs for 24 different online pharmacies that moderators recommend for purchasing hormones, and a second listing six distributors of syringes and needles.Most pharmacies recommended on this forum distribute drugs that the FDA would consider illegal, and the backlash from officials may not be far off.

Participants also receive seven disclaimer emails stating that the group “does not promote or approve the personal exchange (buying, selling, trading) of any type of drug requiring a prescription or illegal drugs to any person whatsoever.” The same message appears in red on the forum’s homepage.

As some trans sites mention, online pharmaceutical consumers may be subject to fraud or may not always receive their packages, which can be stopped in, for example, U.S. Customs. The pharmacies referenced are largely based in Europe and the South Pacific.

But the heyday for online distributors may be waning. Just last October, the FDA joined Interpol’s Operation Pangea — a global effort to decrease the prevalence of illegal medical products — and with it shut down nearly 18,000 Internet pharmacies.

Ordering online exacerbates what was already a dangerous situation, Bell said. Even used under supervision, hormones can put users at higher risk for breast cancer and other serious illnesses. Acquiring the hormones from an outside source only amplifies those risks. Bell also warned against other DIY methods mentioned in online guidebooks, such as buying from hormone dealers on the street or getting drugs from Mexico.

“You really don’t know the trustworthiness of that company, so you don’t know what you’re getting,” Bell said. “That can certainly be a danger.”

Garofalo said he commonly sees transgender women who undergo fraudulent silicone injections only to have the treatments result in lesions, infections and, in rare cases, death. Additionally, online hormones typically come in oral forms, which are processed by the liver and can do damage to it. Most doctors prescribe patches or injections to prevent that damage.

Though many DIY-ers are aware of general health risks and most forums urge readers to seek medical care, self-medication remains the method of choice for some.

“The reason for taking this route is quite simple: it’s the only available path to transition,” said Sarah Gerace, a 48-year old transgender woman and moderator for the Yahoo! group.

She added, “For the vast majority, DIY is the preferred choice still, if not for the lack of a well-beaten path, certainly for the privacy and anonymity many feel compelled is absolutely essential in embarking on a course friends and family still see as unacceptable.”

Another Way

There is another way around the system. Some resource centers, notably the Howard Brown Center in Chicago, have launched hormone distribution programs based on informed consent, a process now acknowledged by the WPATH Standards of Care, through which clients can start hormone therapy without approval by a therapist so long as they are competent and at least 18-years-old.

Redmond Lhota, a 20-year-old Northwestern student who started transitioning to male over a year ago, said he has heard about transitioning on DIY hormones but believes it to be too dangerous. He is currently receiving care through Howard Brown’s THInC (Transgender Hormone Informed Consent) program, where a healthcare professional provides him with a prescription for testosterone and monitors his hormone levels. Overall, Lhota, who studies engineering said he has been happy with his care, but emphasizes that transitions are difficult, even with medical supervision.

“When I was on a two-week cycle doing intramuscular injections, I had problems with a big spike at the beginning and a hard fall-off at the end,” he said. “These were accompanied by big mood swings. Because I was under medical care, my doctor was able to suggest that I switch to weekly subcutaneous injections, which work a lot better for me. Less swing and less scary needle.”

Baylie Roth, a trans patient navigator, or counselor, for THInC, said he would like to see the field of transgender medicine shift to a place of informed consent, where a client would drive the chronology for his or her own care.

“I’ve never encountered a trans person in my life who wanted hormones and wasn’t ready for them,” he said. “The dominant culture puts the idea of ‘being ready’ on trans people instead of letting them decide for themselves. My job is just to make them aware of the changes that might happen. We should shift the thinking away from when they’re ready to how we can help.”

More Competent Care

With more and more trans-positive clinics taking on the ‘informed consent’ model, the road to transition could be slightly less treacherous in the future, according to experts and trans interviewed for this story.

The key, according to Amelia, will be an increase in research on trans-medical issues and efforts to better inform healthcare providers about the population – which has extremely difficult to gauge or count although NCTE estimates that between .25 percent and 1 percent of the U.S. population is transexual.

In the meantime, DIY-ers will likely continue to care for themselves.

“The trans community has compiled a lot of information about all of the medications we take,” Amelia said. “Usually trans people have to educate ourselves about the way everything works, and we end up having to educate our doctors about it, which has consistently been a frustrating thing.”

Ryan Sallans, a 34-year-old transgender speaker, consultant and author who presents his program “Scouting the Unknown” at universities and hospitals across the country, urges young adults to be patient and work with, not against, the medical system. He is currently working with Arms Risk Affiliate Management, Inc., a New York-based nonprofit that creates LGBT-sensitive online courses and trainings for medical personnel.

“We always need to advocate for our own health,” he said. “If you are calling somewhere and they’re not giving you the right information or they say they can’t do it, do some research and get back at them. Don’t be scared to use your voice. When you do that, things happen.”