Transgender Youth Face A number of Obstacles to Well being Care, Research Finds
Piper, a 17-year-old transgender girl, says she knows she is lucky.
She lives just outside of Atlanta with a supportive family and two rescued leopard geckos, Saturn and Juno. Queer Med, a private gender clinic, is just a short drive away. Two years ago, after a five-month inquiry, she began therapy with gender-affirming hormones – a comparatively short waiting period. The treatments triggered a monumental change in Piper’s self-image. “I’m just more confident in my body,” she said. (Piper’s family members asked to identify her by her first name only to protect their privacy.)
Things are not perfect. Piper still sees a regular pediatrician for her other health needs, but the staff there still occasionally uses the wrong pronouns or her former name. Her family’s new insurance plan is not accepted at Queer Med, so they have to pay out of pocket for each visit – about $ 150 excluding lab fees.
And the risk of their care not being available is constant, as Georgia is one of 20 states this year to pass laws banning or restricting gender-based treatment for minors. Piper plans to leave the South after high school out of concern for her health and safety. But things could be a lot worse, she knows. “I’m so lucky,” said Piper. “Many don’t stand a chance.”
According to a recent study in JAMA Pediatrics magazine, many barriers prevent young transgender people from getting the medical care they need. this includes stigmatization and discrimination by the health system as well as legal, economic and social obstacles to gender-equitable care. A 2019 study by the Centers for Disease Control and Prevention estimates that approximately 1.8 percent of high school students in the United States identify as transgender.
The JAMA paper is the first to review qualitative studies of young transgender people’s experience of accessing health care. It included 91 studies from 17 countries over several decades and included transgender and non-binary adolescents aged 9 to 24 years – a broad spectrum that was required due to the extremely limited data on the subject.
“There is such a big gap between health care providers and trans youth right now,” said Dr. Lauren Chong, pediatric intern at Sydney Children’s Hospitals Network in Australia and reviewer.
“The results weren’t at all surprising,” said Talen Wright, a graduate student who studied transgender mental health in the Department of Psychiatry at University College London and was not involved in the research. “It’s strong evidence that things have to change.”
Major medical associations, including the American Medical Association and the American Academy of Pediatrics, have advocated gender-affirming treatment for adolescents. (However, medical guidelines recommend that children under the age of 18 have sex-affirmative genital surgery.)
But treatment remains controversial for some health care providers, lawmakers, and parents precisely because it affects teenagers. Puberty blockers and hormone therapy, the two gender-specific treatments for minors, are most effective when taken at the onset of puberty, such as the ages of 8-14, before the age of independent medical approval in most states.
There is no uniform set of rules stipulating when and how transgender young people can receive gender-affirming care. In general, however, clinicians conduct a number of mental health assessments in accordance with treatment practices, such as those established by the World Professional Organization for Transgender Healthcare or the Endocrine Society. These evaluations are intended to assess a young person’s self-image and confirm that medical intervention makes sense.
“It is designed to ensure that patients are making a fully informed decision that will protect their future well-being,” said Dr. Chong.
Dr. Michele Hutchison, a pediatric endocrinologist at Arkansas Children’s Hospital who was not involved in the research, added, “We want to make sure this is 100 percent tenable and safe as far as it is ever possible in medicine.”
For the most part, her young patients are sure of their decision. “By the time these children come to me, they’ll have known for a long time,” she said.
However, some young patients in the JAMA review criticized what they saw in these reviews as “gate-keeper” measures that limit timely access to puberty blockers and hormone therapy at a time in development when these treatments would be most effective. Some adolescents said they felt the need to demonstrate that they were “trans enough” to be approved, and others expressed frustration when a parent refused to consent to hormone therapy, thereby denying them access to health care .
“We really need to think about the structural barriers that we ourselves create as providers,” said Dr. Gina Sequeira, a co-director of the Seattle Children’s Gender Clinic who was not involved in the research. “Most of the children I see have overcome many, many barriers.”
Transgender patients also face broader health care barriers, according to the JAMA review. Insurance proved to be a frequent and sensitive issue; some families struggled to cover puberty blockers and others struggled to find a trans-friendly provider on the network. And those who were not insured had high costs.
There are also waiting lists, often several months, to make an appointment. Dr. Cassie Brady, a pediatric endocrinologist at Vanderbilt University in Tennessee who was not involved in the research, said her clinic often has a waiting list of around 50 people. “We’re doing everything we can to get these kids in,” she said.
For a young transgender person, the very prospect of entering a clinic can be unsettling. A 14-year-old on the review said she felt “petrified” walking into places for fear that her gender identity would be mocked or dismissed. Another youth said clinicians glossed over their identities and called them “just a phase”.
Hayden Wolff, who graduated from Tufts University in Massachusetts in 2021, began his medical transition when he was 18. He remembered a visit to his school clinic where his electronic health records were out of date.
“Here I am with a high fever trying to take care of myself, and I am being misrepresented in front of everyone else in the room,” said Mr. Wolff.
The review authors also noted that more research is needed on the long-term effects of sex-affirming treatments. When Mr. Wolff met with doctors in Boston, he was pressured to withhold hormones if he was worried about fertility. Doctors in California told him not to worry, although they weren’t sure about the longer-term results.
“You have to make decisions without a lot of information and data,” said Wolff.
He decided to freeze his eggs. The doctor who saw him in Boston had never treated a transgender patient before and had made Mr. Wolff feel like a “transgender,” he said. The clinic’s nurses asked Mr. Wolff invasive questions that had nothing to do with egg freezing.
“Laboratory nurses asked me if I would have my penis after that, which is ultimately none of their business,” he said. “When you are a child, you don’t feel like you have the power to say to someone, ‘You make me uncomfortable.'”
Clinicians said it doesn’t take much to improve health care for young transgender patients. For example, patients should be allowed to provide their own name and gender before consulting a doctor. “That hit me hardest as a trans person who received medical attention and waited for them to call my wrong name or wait for them to address me as ‘Mister’,” said Dr. Baer Karrington, a pediatric intern at Seattle Children’s.
In the examination room, says Dr. Chong, doctors and nurses should use gender-neutral terminology and avoid terms such as “ovaries” and “uterus”. “You can only say reproductive organs,” she said.
Dr. Sequeira found that young transgender people as well as young people from the countryside are disproportionately underrepresented in pediatric gender clinics. “The future of this work is to make it accessible to young people we are not currently serving,” she added.
Telemedicine could help fill this gap and doctors in all fields could be better trained to care for transgender patients. Dr. Karrington said that during pediatric education, only in the youth rotation did they learn about transgender health care, which was not directed to younger transgender children who were being treated elsewhere in the hospital.
Transgender youth and clinicians expressed a desire to see more transgender providers who could share their life experiences with their young patients. Dr. Karrington, the first transgender resident on their program, said they could count the number of transgender pediatricians they knew on both hands. In Atlanta, Piper’s doctor in queer med is transgender, which she found comforting. “They know what I’m going through and can confirm that it gets better,” said Piper.
While Piper hopes more transgender people will become doctors, she wants to become a zoologist, inspired by her geckos. “It’s my calling,” she said. “I’ve known that for a long time.”