It’s not every day that a teenage girl speaks to crowded roomfuls of physicians at a professional medical conference, but Jazz Jennings is no everyday girl.
Jazz, age 15 years, is a transgender teen, activist, book author, reality-TV show star, and so far the youngest national transgender spokesperson in the United States. She and her parents, Jeannette and Greg (“Jennings” is not their real last name), were invited by the American Association of Clinical Endocrinologists to participate in several sessions on transgender medicine at the organization’s annual meeting in Orlando last week.
When asked by an audience member what she wishes medical professionals knew, Jazz responded: “A lot of people think it’s a choice being transgender. I would want any professional I’m with to understand that this is the way I am….I would want them to provide the necessary care in order for me to feel like my best self.”
In addition to two Meet-the-Expert sessions and a press briefing with the family, the AACE meeting also featured a 2-hour 45-minute in-depth symposium, “Transgender Medicine: What an Endocrinologist Should Know,” covering both pediatric and adult treatment. All the sessions drew large audiences.
The intention in inviting Jazz and her parents, AACE past president Mack Harrell, MD, told Medscape Medical News, “was to introduce endocrinologists to a real live transgender 15-year-old who’s doing great, with really supportive parents and a healthcare system that provides care. Unfortunately, she is the exception. A lot of children and adults who are transgender cannot get care.”
The meeting sessions were co-chaired by Vin Tangpricha, MD, PhD, associate professor of medicine at Emory University, Atlanta, Georgia, an endocrinologist who has been treating transgender adults for over 15 years, and pediatric endocrinologist Stephen M. Rosenthal, MD.
Dr Rosenthal is co-founder of the Disorders of Sex Development Clinic at the University of California, San Francisco (UCSF) and founder and medical director of the UCSF Child and Adolescent Gender Center.
The focus on the adolescent reflects current thinking, Dr Tangpricha told Medscape Medical News. “There are a lot of good data showing that hormone therapy earlier helps quality of life. It’s associated with very few adverse outcomes, and people do much better under appropriate endocrine care.”
He noted that in the past decade the age at which patients present for hormonal treatment has been dropping.
“People used to present in their 40s, because they didn’t know who to go to. Now, families are realizing there are things that can be done earlier. I think this is going to be more of a pediatric condition than an adult condition 10 years from now. I think the adult providers won’t really be initiating hormones but just continuing them.”
Jazz was born with physiologically normal male genitalia but began calling herself a girl as soon as she was able to speak. “I was always a girl. I was never anything else,” she asserted.
Dr Rosenthal described the “gender-affirming” medical approach to children and adolescents with “gender dysphoria,” the current official diagnostic term.
He summarized information from two documents: Clinical practice guidelines from the US Endocrine Society that are currently under revision (J Clin Endocrinol Metab. 2011;DOI:10.1210/jc.2009-0345), and Standards of Care from the World Professional Association for Transgender Health. He also drew from a review article he wrote on the subject (J Clin Endocrinol Metab. 2014;99:4379-4389).
After a psychological evaluation to determine the patient’s readiness, those who are in early adolescence (Tanner stage 2 or 3) are prescribed a puberty-blocking agent, typically a GnRH agonist, given either by injection (leuprolide acetate or triptorelin acetate) or as an implant (histrelin acetate).
These agents prevent the child from going through the “wrong puberty” and, because they’re reversible, provide less pressured time for further consideration. None of the agents are currently approved for this indication by the US Food and Drug Administration. “I’ve been working with pharmaceutical companies to get them to move forward on this,” Dr Rosenthal noted.
The next step, at around age 16 but sometimes sooner, the patient is given cross-sex hormones — ie, estrogen for those transitioning to female, testosterone for those transitioning to male.
Jazz had been living as a girl since the age of 5, without medical assistance. As puberty neared, a long search by Jeanette finally located a surgeon who would implant histrelin acetate into Jazz’s arm at age 11, and a pediatric endocrinologist who prescribed her estrogen beginning at age 12 years 6 months.
Asked about those experiences, Jazz said: “I know that having the blocker really helped make me happy. To know that I’m in the body the way I feel on the inside is just so reaffirming.…I could definitely see myself being suicidal if I couldn’t be blocked and had to develop as a male with a beard and mustache and all those secondary-sexual characteristics. I would just be so devastated.”
And as for the estrogen, she said she started sooner than the 16 years recommended in the guidelines because she was going through depression not related to being transgender, and she, her family, and her healthcare providers thought the hormone might “help balance things out.”
Indeed, she said, “It did.…I’ve now been on estrogen for about 3 years and I’m developing and I’m just happy in my body and I think all kids should feel that way.”
Dr Rosenthal noted that the clinical-practice guidelines “are only guidelines, not rules.…There may be very compelling reasons not to wait till 16.” In fact, the age of 16 was chosen only because that’s the age of legal medical decision-making in Europe, not because it has anything to do with physiology or mental health. Whether or not the new Endocrine Society guidelines will modify that age is currently under debate, he said.
According to Jazz, who won’t turn 16 until October, “I can’t imagine not being on estrogen right now.”
The third step, gender-reassignment surgery, isn’t universally undertaken. Jazz said she hopes to have it done when she’s 17 or 18.
Dr Rosenthal emphasized the importance of a multidisciplinary approach to the transgender adolescent. “A transgender adolescent is first and foremost an adolescent. No one person has all the expertise to provide sensitive and comprehensive care.”
At UCSF, Dr Rosenthal directs the medical component that includes a primary-care adolescent specialist, along with specialists in mental health, education, advocacy, and an attorney for legal services.
Insurance plans are increasingly covering the treatment, and some states mandate it, he noted.
Family Support Essential
Of course, family support is critical for transgender children and adolescents. For Jazz’s parents, it was “an evolution,” her father said.
“Jazz was expressing her true identity very early at a young age. Jazz has the gift of being extremely intelligent and articulate.…It made it easier for us to understand her, but it wasn’t an easy path.…There wasn’t a great deal of information out there,” he explained.
Eventually, though, “Through listening to our child and speaking to medical professionals, we came to realize that there was really one path, notwithstanding how society might view that path.”
Today, Jazz and her family — including an older sister and twin brothers — star in the US reality-TV show I Am Jazz, now in its second season on The Learning Channel.
She has also written two books, and in 2007 with her parents founded the TransKids Purple Rainbow Foundation, which assists transgender youth. Since Jazz is also a typically busy high school student, Jeannette answers as many of the emails that come in for Jazz as she can, sometimes consulting Jazz about what to say. (She always lets them know she’s Jazz’s mother.)
Jazz Jennings said that some kids have written to tell her that were it not for her example they would have killed themselves: “That shows me that I’m doing the right thing by sharing my story.”
During the session, Dr Rosenthal, who switched his entire pediatric endocrinology focus to transgender medicine just 7 years ago, commented, “I have never loved anything as much as this work.” Turning to the Jennings family, he added, “When I meet a family or a kid like you, I think this is why I do what I’m doing.”
Dr Tangpricha, Dr Rosenthal, and Dr Harrell have no relevant financial relationships.
American Association of Clinical Endocrinologists 2016 Annual Meeting; 2016 Annual Meeting; May 28, 2016; Orlando, Florida.