Increase in juveniles seeking transgender HT spurs need for more research
The number of transgender juveniles and young adults seeking hormone therapy has increased sharply in recent years, according to a pair of physicians who are each working toward increasing the amount of data currently available on the subject.
Stephen Rosenthal, MD, medical director of the Child and Adolescent Gender Center (CAGC) at UCSF Benioff Children’s Hospital, told Endocrine Today that he has seen requests for consultations more than quadruple during the past few years. Founded in 2010, the CAGC has nearly 300 patients and is receiving an average of 10 new referrals every month, according to Rosenthal.
Meanwhile, Marvin Belzer, MD, who specializes in adolescent medicine and researches gender identity and transgender care for youth at Children’s Hospital Los Angeles, described an “absolute flood of patients,” not just in his own program but in cities throughout the United States.
“We’re getting four or five new referrals every week, and we have over 500 patients, with 100 on a waitlist, whereas 5 years ago we were a program with 100 or fewer patients,” Belzer told Endocrine Today. “My colleagues in Denver, Philadelphia, Chicago and San Francisco, with almost all of them in programs that were nonexistent 5 years ago, all now have 100 to 250 patients.”
According to Belzer, these figures may indicate that the prevalence of gender dysphoria among the general population may be greater than what has been previously estimated.
“We used to think of it as 1 in 30,000,” Belzer said. “It’s probably much higher than 1 in 1,000, and maybe as high as 1 in every 200 or 300 people. It’s like the floodgates have opened.”
And yet, there is a dearth of published data and observational studies available on HT for transgender individuals. According to Rosenthal, the most important of the few studies currently available is a 2014 paper by a Dutch group, published in Pediatrics, the official journal of the American Academy of Pediatrics. It is currently the only published outcomes study using pubertal blockers, cross-sex hormones and gender confirmation surgery. Other studies have examined the potential adverse effects of HT on bone health, as well as on the brain, specifically regarding executive functioning. Another area of investigation is fertility, as transgender individuals are increasingly voicing a preference for building families using their own genetic material.
According to Rosenthal, there is a dire need for more research.
“There is no published data using pubertal blockers on patients under 12 years old, there’s no published data using cross-sex hormones in transgender individuals under 16 years of age, there is only one relatively long-term observational study on the use of blockers, followed by cross-sex hormones, followed by gender reaffirming surgery,” Rosenthal said. “So there is a tremendous need for data.”
Rosenthal is currently part of the first U.S. study of transgender youth funded by the NIH. Announced in August, the 5-year multicenter study will be the first in the United States to research the long-term outcomes and safety of pubertal blockers and cross-sex hormones for transgender juveniles.
Other centers involved in the study include the Ann & Robert H. Lurie Children’s Hospital of Chicago and the Northwestern University Feinberg School of Medicine, the Boston Children’s Hospital and Harvard Medical School, and the Children’s Hospital Los Angeles and Keck School of Medicine of USC.
“This is the first time that the NIH has said this is even important enough to fund,” Rosenthal said, noting the increase in the number of transgender youth seeking information and treatment at the CAGC. “People may also be coming to our center because they know they can contribute to the research process, and they know we’re very much invested in not only providing service, but also in moving the field forward.”
Belzer also will be conducting research in the NIH study, at the Children’s Hospital Los Angeles. He said that although HT has so far shown to be safe — with instances of blood clots and other adverse effects being “exceedingly rare” when administering estrogen — an observational study is needed to document its effects.
“We need a prospective study to confirm what we already suspect, so no bias is involved,” Belzer said. “There are some important questions for young children about bone health. When do we delay puberty? When do we start puberty blockers? The current guidelines say to wait until the age of 16 to start cross-sex hormones, but we feel strongly that delaying puberty until 16 is cruel and inadvisable.”
Rosenthal and Belzer each offered advice to physicians with transgender patients, noting that it important to keep in mind the prejudices and negative experiences they may face on a day-to-day basis.
According to Belzer, many transgender children and young adults suffer severe depression and anxiety. Rosenthal added that older transgender individuals may have had previous negative experiences with the health care system.
“The first thing is to be sensitive, to understand that a transgender individual regardless of age — but certainly older transgender individuals — may have experienced discrimination and biases,” Rosenthal said. “It’s important to have people feel welcomed, to have them feel that anyone of any gender is welcome, and to try to make that apparent and to be sensitive in that way.”
Rosenthal added that physicians may want to alert staff members who may interact with the patient of the individual’s preferred name and pronoun. He added it is important that patients be informed about the data behind the treatments they are receiving.
“Make sure that people understand that recommendations are based first on the data that are out there,” he said. “Beyond that, you would want to be as sensitive a provider as you would to any other patient.”
According to Belzer, physicians must be mindful of their state’s health insurance laws, as insurers will often deny coverage for transgender HT.
“The problem right now in the United States, going back 5 to 10 years ago, is that almost all insurance companies just excluded transgender care, saying it was a psychiatric problem, and it was just written out of every policy,” Belzer said.
However, according to Belzer, this has slowly begun to change, after the AMA, the Endocrine Society, the American Psychological Association and the World Professional Association for Transgender Health all stated that transgender HT was a medical issue and, more importantly, “medically necessary.”
“Every single state and their insurance companies are in different places in a continuum,” Belzer said. “For example, in California, the health commissioner has stated they cannot treat gender dysphoria any differently than any other medical condition, and you have to provide hormonal therapy and surgery, and the state Medicaid will pay for surgery, hormones and treatment. Gradually and surely, insurance companies are figuring it out, and not doing delaying tactics and dragging their feet. It doesn’t mean it’s always easy, but it’s getting better.” – by Jason Laday
First U.S. study of transgender youth funded by NIH [news release]. University of California, San Francisco; Aug. 17, 2015. http://www.newswise.com/articles/view/638731/. Accessed Nov. 18, 2015.
Rosenthal reports that has previously been a consultant for AbbVie, until November 2014. Belzer reports no relevant financial disclosures.