When Transgender Kids Transition, Medical Risks are Both Known and Unknown

June 30, 2015
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by Priyanka Boghani Digital Reporter

The last couple of years have seen burgeoning awareness in society of what it means to be transgender as an adult. But now doctors, like those at Ann and Robert H. Lurie Children’s Hospital of Chicago, are helping children who identify as transgender negotiate their journey into adulthood.

For earlier generations of transgender people, the only way to transition physically was through surgery or taking hormones as adults. However, new medical options are allowing transgender children to start the process of transitioning at younger ages.

But doctors tread carefully, navigating medical interventions that carry risks that are both known and unknown.

PUTTING A PAUSE ON PUBERTY

When someone makes the decision to transition, part of that process can be social — choosing a new name, changing pronouns, wearing different clothes — and part of it can be medical.

One of the more recent medical developments is the use of puberty blockers to treat children who are transgender or gender non-conforming. The medications, which suppress the body’s production of estrogen or testosterone, essentially pause the changes that would occur during puberty.

“That’s really what these pubertal blockers do,” Dr. Rob Garofalo told FRONTLINE. Garofalo is the director of the Lurie Children’s Hospital’s Gender and Sex Development Program. “They allow these families the opportunity to hit a pause button, to prevent natal puberty … until we know that that’s either the right or the wrong direction for their particular child.”

Doctors who use puberty blockers say they allow children who experience gender dysphoria — the feeling that they’re in the wrong body — the time and space to explore and settle on their gender identity. What makes treatment tricky is that there is no test that can tell whether a child experiencing distress about their gender will grow up to be transgender. The handful of studies that do exist suggest that gender dysphoria persists in a minority of children, but they involved very few children and were done mostly abroad.

Puberty blockers have been tested and used for children who start puberty very young — if their bodies start to change before the age of eight or nine. Dr. Courtney Finlayson, a pediatric endocrinologist at Lurie Children’s Hospital, said, “We have a lot of experience in pediatric endocrinology using pubertal blockers. And from all the evidence we have they are generally a very safe medication.”

But their use in treating transgender children is a relatively new practice, first prescribed in the United States by the Gender Management Service at Boston Children’s Hospital in 2007, and recommended in the Endocrine Society’s guidelines for the treatment of transgender people in 2009.

Doctors say the benefit of using puberty blockers is that they block hormone-induced biological changes, such as vocal chord changes, the development of breast tissue or changes in facial structure, that are irreversible and can be especially distressing to children who are gender-non conforming or transgender.

“One of the challenges that’s been faced in the past is that treatment of the transgender population really didn’t start until they were either at least older adolescents or adults,” said Finlayson. “And by that time they’ve had all of the pubertal and physical changes that go along with their … natal sex.”

With the use of puberty blockers, “we’re really starting to some extent from a little bit more of a blank slate,” Finlayson explained. “We don’t have to be erasing or trying to get rid of all these other changes that occurred that they don’t want.”

However, the use of puberty blockers to treat transgender children is what’s considered an “off label” use of the medication — something that hasn’t been approved by the Food and Drug Administration. And doctors say their biggest concern is about how long children stay on the medication, because there isn’t enough research into the effects of stalling puberty at the age when children normally go through it.

The Endocrine Society’s guidelines suggest starting puberty blockers for transgender children when they hit a stage of development known as Tanner stage 2 — usually around 10 or 11 years old for a girl and 11 or 12 years old for a boy. The same guidelines suggest giving cross sex hormones — estrogen for transgender girls and testosterone for transgender boys — at age 16. However, doctors caution that estrogen and testosterone, the hormones that are blocked by these medications, also play a role in a child’s neurological development and bone growth.

“We do know that there is some decrease in bone density during treatment with pubertal suppression,” Finlayson said, adding that initial studies have shown that starting estrogen and testosterone can help regain the bone density. What Finlayson said there isn’t enough research on is whether someone who was on puberty blockers will regain all their bone strength, or if they might be at risk for osteoporosis in the future.

Another area where doctors say there isn’t enough research is the impact that suppressing puberty has on brain development.

“The bottom line is we don’t really know how sex hormones impact any adolescent’s brain development,” Dr. Lisa Simons, a pediatrician at Lurie Children’s, told FRONTLINE. “We know that there’s a lot of brain development between childhood and adulthood, but it’s not clear what’s behind that.” What’s lacking, she said, are specific studies that look at the neurocognitive effects of puberty blockers.

“I wouldn’t use [puberty blockers] if I didn’t think that they were safe, or that the benefits didn’t outweigh the potential risks,” Finlayson said. “But we always have this conversation with families before we start.”

STARTING HORMONES

The stakes are higher for children who want to continue physically transitioning by taking the hormones of their desired gender. Doctors grapple with when to start cross-sex hormones, and they say it really depends on the child’s readiness and stability in their gender identity.

While the Endocrine Society’s guidelines suggest 16, more and more children are starting hormones at 13 or 14 once their doctors, therapists and families have agreed that they are mentally and emotionally prepared. The shift is because of the concerns over the impact that delaying puberty for too long can have on development, physically, emotionally and socially.

The physical changes that hormones bring about are irreversible, making the decision more weighty than taking puberty blockers. Some of the known side effects of hormones include things that might sound familiar: acne and changes in mood. Patients are also warned that they may be at higher risk for heart disease or diabetes later in life. The risk of blood clots increases for those who start estrogen. And the risk for cancer is an unknown, but it is included in the warnings doctors give their patients.

Another potential dilemma facing transgender children, their families and their doctors is this: Taking cross hormones can reduce fertility. And there isn’t enough research to find out of it is reversible or not. So when children make the decision to start taking hormones, they have to consider whether they ever want to have biological children.

“I think it’s really important to talk to these children and families about fertility,” Finlayson says. “I do worry that at that stage in life many of them may not be able to realize how important that would be to them someday.”

It’s an ethical question that each family has to deal with in their own way, because if a child goes from taking puberty blockers to taking hormones, they may no longer have viable eggs or sperm at the age when they decide they would like to have children. They do have the option to start their puberty and delay their treatment in order to store eggs or sperm, but some of them may not want to.

While transgender adults have taken hormones sometimes for years, the generation growing up now is among the first to start taking hormones so young. Since most people who start hormones take them for life, doctors say there also isn’t enough research into the long-term impact of taking estrogen or testosterone for what could end up being 50 to 70 years.

“There are so many unanswered questions around the long-term consequences, and whether your health risk profile really becomes that of a male or female,” Garofalo says. “If we start testosterone today, will you have the cardiac risk profile of a male or female as you grow older? Will you develop breast cancer because we’re administering estrogen?

“I think those are the unanswered questions that really trouble me, and can only be answered with long-term follow-up studies.”

THE COST OF TRANSITIONING

Most of these treatments are still very expensive and often out of reach for people without the help of insurance. The cost of puberty blockers is approximately $1,200 per month for injections and can range from $4,500 to $18,000 for an implant. The least expensive form of estrogen, a pill, can cost anywhere between $4 to $30 a month, according to Simons, while testosterone can be anywhere between $20 to $200 a vial.

“What we’re seeing in the clinic is that whether or not specific insurance plans cover medication or not is completely arbitrary,” Simons said. “It really can’t be predicted very easily.”

“We almost always just expect a denial,” she said.

“Though it is not the only treatment, doctor-supervised medical transition is critically important to aid people in the treatment of gender dysphoria,” Vincent Paolo Villano, the director of communications at the National Center for Transgender Equality, told FRONTLINE. “Access to medical transition is often unobtainable due to cost and insurance discrimination.”

“Transgender people experience twice the rate of unemployment as non-transgender people, which means they often lack insurance to gain access to health care, period,” Villano said. “And even for trans people with insurance, health plans often outright ban coverage of transition-related care, forcing transgender people to pay outrageous out-of-pocket expenses for medically-necessary procedures that are covered without question for non-transgender people.”

But the trend might be changing, with some insurance companies starting to cover the cost of transitioning. The team at Lurie Children’s Hospital says it has seen several cases in recent months that did not require appeals, or covered the medication after the first appeal.

Ultimately, the doctors working in clinics like the one at Lurie Children’s hope to spare transgender children some of the anguish and societal isolation that earlier generations of transgender people went through. But they too would like the answers to the unknown consequences of these medications.

“The stakes are super high, and we don’t have all the answers,” Garofalo says. “Hopefully, there’s going to be more research and some of those unanswered questions, hopefully, will begin to be answered.”

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