Toward a Better Future for Transgender Health Care
By: Bax J Ferguson
Tags: Science, Equality, LGBTQ, Health, Transgender

Stories about the future of trans medicine tend to focus on the up-and-coming techniques we might see decades down the line. But the fight for the future of trans health starts with the decisions we make right now. Who deserves access to health care? Who decides what that care looks like? Whose experience are we studying, and what do we intend to do with that information when we have it?

Jess Ting, MD, at the Mount Sinai Center for Transgender Medicine and Surgery (CTMS), pioneered a new method for vaginoplasty, which you might have seen popularized on Grey’s Anatomy after the fascinating story behind it was published in Wired. Now Ting is trying to improve surgical outcomes for trans men and other transmasculine people. “The most common technique for creating a phallus requires removing all of the skin from one of your arms. Basically from wrist to elbow, we remove circumferentially about 80 percent of the skin, and that results in severe scarring in that arm,” Ting says. The scarring not only is distressing for many patients but also can act as an identifier for anyone who has had the surgery.

This sacrifice is just the beginning of what can be a long and painful process, despite its ultimately affirming impact. Ting sees a number of different areas where this surgery could improve and is focusing on creating a “completely new approach” to phalloplasty that won’t cause scarring, will provide a better skin tone match than a graft from the arm, and will offer better outcomes in terms of lowered complication risk and better healing, function, and sensation.

Other gender specialists around the world are working on new technologies and scientific advancements that could revolutionize gender-affirming care. “It’s happening really fast,” says Cei Lambert, transgender program patient advocate at Fenway Community Health Center in Boston, Massachusetts. Lambert sees big developments happening in the field of hormone blockers, in fertility and reproduction, and in genital surgeries using robotic and microsurgical techniques.

“There might be a time—not today, but maybe 10 or 20 years down the line—where we can tissue engineer a sexual organ in the lab and then transplant it onto a patient,” Ting says. But this and other advancements depend on the cooperation of the entire system. “I’ve seen a lot of people who come from backgrounds in hand surgery, where there’s a lot of very tiny nerve and blood vessel reconstruction. Those people are seeing that there’s a need in the transgender community for that level of precision, and they are turning their attention to vaginoplasty or phalloplasty.” In doing so, they are definitely taking a risk. “We are very vulnerable practitioners,” Ting says. “If insurance [for trans-affirming care] were to go away tomorrow, I wouldn’t be able to do what I do.”

“The surgeries we do, as gender surgeons, are not elective surgeries,” Ting says. “I think of them as lifesaving surgeries.”

“It’s an issue of money,” agrees Zil Goldstein, clinical program director at Mount Sinai’s CTMS with Ting. “We need to start prioritizing research that focuses on what transgender people’s priorities are. No one is funding research that looks at what hormone regimen gets the best breast development, what testosterone regimen is most likely to give someone facial hair. If someone comes in for hormone therapy, I can’t say, ‘This is the most likely regimen to give you success,’ because those data just aren’t available. We don’t even know what a best possible hormonal transition looks like. There’s a lot of disagreement in the field.” A lack of data, Goldstein says, is preventing patients from getting the best treatment that science could give them. “I want people to get the best available care, and right now, the best available care is, unfortunately, suboptimal.”

It may seem strange to see medical professionals encouraging surgeries and health care they describe as “suboptimal” if you don’t understand the seriousness of gender dysphoria. “The surgeries we do, as gender surgeons, are not elective surgeries,” Ting says. “I think of them as lifesaving surgeries.”

The distinction between elective and lifesaving surgeries is important. You might put off a nose job, for example, if you’re waiting for the development of a brand-new technique. But hopefully, you won’t have to wait six months to schedule emergency heart surgery.

“We know that transgender-related medical interventions improve mood and quality of life,” Goldstein says. “There is a 40 percent suicide attempt rate in the transgender community. Anything that we can do to prevent suicide is lifesaving.”

This point came up again and again with both service providers and trans patients or advocates: Cultural and professional competency, offering trans people affirming and appropriate care in all medical situations, saves lives. And the earlier this need for care can be identified, the better a patient’s outcomes will be.

Reaca Pearl is a health service provider, a trans person, and the parent of a trans child. “All of the accredited research is saying what we as parents knew it would say,” Pearl says. “When you support your kid, your kid has great mental health outcomes. Trans kids who are not supported by their family have an eight-times-higher suicidality rate than teens who are supported by their families.”

Hormone blockers allow trans and gender-nonconforming children the opportunity of more time to deal with any potential mental health issues, to grow resilient in the face of trans hatred, and if necessary, to develop a deeper sense of their own gender identity.

According to Ann Travers, author of The Trans Generation, a recent book on trans children, “Affirming treatment focuses on enabling kids’ families to accept and affirm their children’s gender identity, supporting them in dealing with the mental health consequences of trans oppression, and providing assistance and advocacy as the kids and their families navigate gendered environments.” When desired, this might include hormone blockers, meant to facilitate both puberty suppression and social transition.

Travers describes social transition as “a key way for transgender children to explore the extent to which a change in gender will bring about a lessening of the anxiety and distress they experience. Puberty suppression extends this period of exploration by delaying the development of secondary sex characteristics.” In other words, hormone blockers allow trans and gender-nonconforming children the opportunity of more time to deal with any potential mental health issues, to grow resilient in the face of trans hatred, and if necessary, and to develop a deeper sense of their own gender identity. Both Ting and Travers say that research indicates children develop a strong sense of gender and their place in it as early as age three or four, some even earlier. As Travers points out, “family acceptance is known to be the most significant variable with regard to mental health outcomes for trans kids.”

Trans children and teens are especially at risk of being denied necessary treatment because affirming care often requires the approval of parents or caregivers. “We know that it is a life-or-death issue. Whether you understand it or not, do try to understand that not supporting a trans kid is putting them at risk,” Pearl tells parents. The responsibility for ensuring the safety of vulnerable, marginalized children falls to the parents of those kids.

Shannon McKay is a facilitator and the co-founder of a support group called He, She, Ze, and We for parents and caregivers of trans kids in Richmond, Virginia. She points to parental gatekeeping as a major barrier to accessing treatment. Most trans youth, McKay points out, do not have both parents supporting their transition. Many of the parents in her circle are divorced, and if legal medical responsibility is shared, this can mean conflict over decisions about transition care. “There is no other medical treatment or surgery that requires two parents to sign off,” McKay says, further demonstrating the need for gender-affirming care to be considered lifesaving, not elective.

The consequences of not being able to access these services are dire.

At Mount Sinai, care for transgender youth is a collaboration between CTMS and the hospital’s Adolescent Health Center, providing puberty blockers to prevent the hormonal maturation associated with a patient’s assigned sex and, if desired, hormones to facilitate gender-confirming puberty. For many trans kids and teens, hormone blockers are a way to prevent their dysphoria from worsening while they figure out what medical transition will look like for them and, unfortunately, whether they can afford it. “With a lot of these kids, we’re seeing that the level of trauma experienced by many trans people isn’t there because they haven’t had to live outside of the gender they identify as,” Lambert says.

The consequences of not being able to access these services are dire. “That period of their lives can be so crucial for their long-term functioning and development,” says Hansel Arroyo, MD, director of psychiatry at CTMS. “These are very high-risk times, and studies have shown that when a family provides support, when a community provides support, trans kids just do better, academically, professionally, and in their interpersonal lives.” Arroyo says that along with increased suicidality, studies have shown that trans teens without support are more likely to drop out of school and become homeless, putting up further barriers to accessing care as adults.

“These are traumatic experiences that patients who don’t have access to transition-related surgery and care have had to endure for decades: severe gender dysphoria to the point of self-harm or attempting suicide, being so desperate to have your body conform to your internal self-identity that you’ll go to a black-market practitioner,” Ting says. Many adult trans people are desperate and willing to take dangerous risks to receive gender-affirming treatments. Unlicensed practitioners injecting unsafe materials into desperate people under unsanitary conditions — this medical crisis bears an uncanny resemblance to the battle for access to safe and legal abortions. Ting has seen patients suffer severe infections, deformations, and death from black-market procedures.

Pearl’s child has ongoing anxiety about accessing hormone blockers, which causes them daily stress. They first contacted their local gender clinic late in 2016. In January 2018, they were finally placed on an official waiting list. Eight months later, they have just had their first appointment, where it was determined that the nine-year-old has already started puberty, making hormone blockers an immediate need.

Medical schools lack sufficient coverage of trans-specific health care, and the professionals I spoke with think doctors and clinics need to take on this responsibility.

Because Pearl is self-employed in their private practice, insurance eligibility and coverage is a major concern for them. “U.S. insurance is so ridiculous and complex that even if you’re able to shop for a plan that’s trans inclusive,” Pearl says, “it’s really hard to get insurance companies to say before you buy it what they’ll cover.” In their state, the Lupron injection used as a puberty suppressant for trans kids costs approximately $7,000 every three months.

Judy Hall and her family have insurance, but it hasn’t been easy to get coverage for her 16-year-old transgender daughter, Sammy. When it became clear that Sammy needed to do something to prevent the onset of testosterone-fueled puberty, Hall says she immediately moved to address the issue, but only as fast as her insurance would allow. It took two months. “I had to fight for it almost every single day to get the Lupron.” She says that even after it was initially approved, she would sometimes have to start the fight again to continue treatment. Luckily, Hall hasn’t had to fight her insurance company over the notably less-expensive estrogen treatment, which Sammy started at age 14.

Before parents and caregivers can worry about affording coverage, they need to find a practitioner willing to treat their trans child. “It was difficult to find someone who really knew what they were doing,” Hall says. “Finding a therapist who specializes in gender issues has been a real challenge.” Even accessing dental care has been difficult. Sammy doesn’t yet have a birth certificate affirming that she is female, and her last dentist refused to gender her correctly. Eventually, the office started canceling her appointments.

Doctors outside of gender clinics are completely capable of providing care for trans patients, and transgender medical specialists would appreciate it if more would. Gender clinics are overwhelmed, and for many trans patients, the wait can be traumatic. In this case, “do no harm” means doing what it takes to provide adequate, affirming care to people of all genders. Studies have shown that medical schools lack sufficient coverage of trans-specific health care, and the professionals I spoke with think doctors and clinics need to take on this responsibility. “If you can treat diabetes as a primary care provider,” Goldstein says, “you can treat gender dysphoria as a primary care provider.”

“You have to educate every single member of your medical staff, from the person who greets you when you walk in the clinic, to the doctors or social workers, to the administrative staff,” Arroyo says. “You should have access to your preferred dermatologist, and that person should be educated in trans health. You have to educate and create an environment that is not just inclusive, but celebrates the transgender experience.” Many medical professionals just don’t know enough about trans-affirming medicine to treat trans patients with confidence, but that needs to change.

Pearl also felt that their primary care provider lacked the confidence to make any decisions about their child’s need for hormone blockers. “They don’t want to be the ones to say that, yes, this kid needs this, and this is the line of treatment I’m choosing.” Instead, kids wait and dread the onset of puberty.

The more medical professionals are willing and able to include trans patients in their practice, the more likely we are to see trans people represented in medical studies. As more doctors are educated in transgender medicine, more are likely to take it up as a specialty and the sooner we can see the benefits of medical advancements and new scientific discoveries. With a change in culture and a move toward compassion, perhaps we can see these developments reaching everyone who needs them.