What to know about gender-affirming care for trans youth as Florida weighs more restrictions
Josie’s bedroom wall in St. Johns County is lined with flags from around the world. One that’s especially important to her hangs on her door. Striped blue, pink and white, it’s the transgender pride flag.
The 15-year-old says it feels good to see it at home but even better to see others wave it in public.
“It makes me feel welcomed and it gives me, like, a sense of community. Like people like me are everywhere, so it’s very comforting,” she said.
We’re only using Josie’s first name to protect her identity. She says these days, her supportive friends and family make her feel welcome, but the state of Florida doesn’t.
Josie is one of thousands of trans kids who may have to go elsewhere to access the treatments they need to support their transitions if health officials further restrict them. A ban on Medicaid coverage for gender-affirming care has already been in effect since August.
On Friday members of the Florida Board of Medicine and Board of Osteopathic Medicine Joint Rules/Legislative Committee will hold a public meeting at the Hyatt Regency Orlando International Airport to consider whether to restrict access to gender-affirming care for transgender kids and teens.
“It’s just sad that they’re practically like forcing us out because we need health care," Josie said.
What is gender-affirming care?
Gender-affirming care can be delivered in a variety of ways based on a person's individual needs. For Josie, it involved years of social changes and mental health counseling. More recently she has supplemented that with hormone treatments.
Every few months, Josie gets a puberty blocker injection. The medicine pauses the onset of features someone assigned male at birth may develop, like facial hair and an Adam’s apple. She also takes estrogen to develop more feminine features through a patch that she changes weekly.
Josie is a patient at the University of Florida Health’s Youth Gender Program in Gainesville
“My experience has been wonderful so far,” she said.
A team of physicians, mental health professionals and lawyers help run the program. Since launching in 2016, it’s offered about 300 kids around the state comprehensive gender-affirming support that follows standards set by the World Professional Association for Transgender Health, the Endocrine Society and other medical organizations.
Clinical psychologist Jennifer Evans says treating the distress a person feels when their body doesn't align with their identity — known as gender dysphoria — with social support and hormones, if necessary, can offer many benefits.
“What we know from the research as well as from our experiences anecdotally in the clinic is that depression decreases, anxiety decreases, suicidality decreases, quality of life improves," she said. "Anecdotally I see school functioning improve for some youth.”
Those benefits have to be weighed on a case-by-case basis with risks, as with any medication. The FDA hasn’t explicitly approved the use of puberty suppressants in children for treating gender dysphoria, but it has approved them to treat the early onset of puberty in kids. When doctors prescribe them for gender dysphoria, it's considered "off-label use," which the American Academy of Pediatrics notes is common in children's medicine and “does not imply an improper, illegal, contraindicated or investigational use."
Florida Surgeon General Joseph Ladapo refers to some potential side effects of hormone treatments — such as osteoporosis and blood clots — in his April guidance advising against gender-affirming care.
Pediatric endocrinologist Kristin Dayton explains those risks are rare and can typically be resolved with treatment.
"People talk about blood clotting with estrogen and in fact the blood clotting risk with the type of estrogen we use for a trans female is going to be much lower than somebody who is on a birth control, which we pretty freely prescribe to young women and even girls who might need birth control for a variety of reasons," Dayton said.
Dayton is one of three experts scheduled to speak at Friday's board of medicine meeting in support of gender-affirming care. Three people who have expressed opposition are also listed on the agenda.
The surgeon general and other opponents of gender-affirming care often argue that most kids, if given time, will quote “lose their desire to identify with their non-birth sex.” They cite past research but it’s been criticized for having flawed methodology.
This month, a study published in the medical journal the Lancet found 98% of their 720 participants diagnosed with gender dysphoria and prescribed hormone treatment as adolescents continued therapy into adulthood.
Dayton said if you force patients to wait until they’re 18 to start treatment, many could undergo permanent physical changes during puberty that become harder to address when they’re older.
"They may ultimately feel a lot less satisfied with the way their body appears for the rest of their lives if you do nothing and wait until they’re an adult, so it’s a risk of not treating in addition to risks of treating," Dayton said.
And there can be mental health consequences if trans people undergo long periods of distress without the support they need. Psychologist Jennifer Evans cites the 2015 U.S. Transgender Survey, which found 40% of trans adults who responded said they’d attempted suicide in their lifetimes — nearly nine times the rate of the general population. An updated survey is underway this year.
"If 40% of adult trans people have made suicide attempts, it is a reality that your child may not be here until they’re 18 if we force them to continue to wait — or beyond 18," Evans said.
"It is so misunderstood"
Clinic staff stress they do not pressure or rush patients and their families into any kind of care.
One other major point endocrinologist Kristin Dayton wants to make about what they do not do:
"We as a pediatric gender clinic do not offer any sort of genital surgeries, anything that would alter the genitalia of anyone who is a child," Dayton said. "So no one under the age of 18 is getting a surgical procedure like that."
She said the only surgeries performed on anyone younger than that in rare cases are top surgeries, typically to help remove breast mass from trans men who are at least 16 and have been receiving treatment for a while. Parental consent and approval from several medical professionals are required.
But state officials, including Gov. Ron DeSantis, are sending a very different message. The governor has repeatedly implied that doctors are “mutilating" children and “chopping off the private parts of young kids.”
Several emails requesting comment from the governor's office and state health officials were not returned.
The widely accepted standards of care say that patients should be at least 16 for top surgery and 18 for bottom surgery.
"It is so misunderstood and so vilified in the media and it's awful," said Jaime Jara, the mother of a 10-year-old trans girl in Kissimmee.
She said her daughter transitioned at the age of five, after a period of depression when the world still viewed her as a boy. So they took her to a therapist.
“That's when she was able to vocalize ‘I am not a boy. I don't know why everyone thinks I'm a boy. I'm not a boy. I'm a girl in my heart and my brain. And I really don't you know, I don't understand why this is so confusing for everyone,’” Jara said.
Jara said her daughter isn’t old enough to be on puberty blockers or hormone treatment. For the last five years, her transition has been social.
“There's so much misconception because a lot of times people are like, 'Oh, you're castrating your child,' and like no, you don't understand," she said. "It's literally just allowing her to grow her hair, picking out new clothes, and really she was playing with those toys anyway, so that wasn't really anything changed."
Her daughter also changed her pronouns, but opted to keep her birth name. She may choose not to go on puberty blockers or hormones, or get surgery in the future. Not all trans people want those interventions.
Jara said her family moved from Miami to Kissimmee when they couldn't find a gender-affirming doctor to sign off on changing her daughter’s gender marker on her birth certificate. Now, they’re planning to leave the state — possibly the country — because of discussions to ban care for trans children altogether.
“We're in enough of a position of privilege at this point to have the ability to do so," Jara said.
Surgeon general Ladapo advises against even social transition for trans children. That’s in conflict with the guidance of most major medical associations in the country.
"I don't want to move, but I mean, fleeing because you're being persecuted,” Jara said.
Back in St. Johns County, Josie’s family is making their exit plan, too. If her health care gets interrupted, they may move to Rhode Island where they have other relatives.
"I just want all the other fellow trans kids to know that there's still hope out there somewhere," Josie said.
Even if that hope can't be found in Florida.
As for policy makers, Josie urges them to remember that their decisions affect people.
Copyright 2022 WUSF Public Media - WUSF 89.7. To see more, visit WUSF Public Media - WUSF 89.7.