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Provider shortages, insurance hurdles complicate treatment for transgender teens
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ORLANDO, Fla. — Reality TV star Jazz Jennings knew she was a girl from the moment she could first express herself and knows she was fortunate to have supportive parents who sought out medical care for their transgender child while she was still young.
It has been 3 years since Jennings, now aged 15 years, received her first gonadotropin-releasing hormone agonist implant, a therapy used off-label to block puberty. The results, she said, have been life-changing.
Jazz Jennings
“Having the [pubertal] blocker helped make me happy,” Jennings, a transgender activist and star of the TLC reality series I Am Jazz, said during a press conference at the American Association of Clinical Endocrinologists Scientific and Clinical Congress. “I know kids who can’t get the treatment and become suicidal, and I can definitely see myself being suicidal if I couldn’t [have puberty] blocked. If I had to develop as a male with a beard and a mustache, everything, all those secondary sexual characteristics, I would be so devastated.”
Jennings credited the love and support of her parents — who struggled to find a pediatric endocrinologist to treat her and continue to battle insurance companies to cover needed therapies — for helping her become a happy, well-adjusted teenager.
“Now I’m on estrogen. I’ve been on it for 3 years, and I’m developing. I’m just happy in my body,” Jennings said. “And I think all kids should feel that way.”
A growing problem
Jennings, who plans to undergo gender reassignment surgery in the next few years, is one of the lucky ones, said Vin Tangpricha, MD, PhD, FACE, associate professor of medicine at Emory University. Tangpricha, who moderated an AACE forum on transgender adolescents that included Jennings and her parents, said there are two key problems affecting access to care: a shortage of qualified providers in the United States who are able to work with transgender youths, coupled with the rapidly changing trend of more children and adolescents seeking therapy for what is often described as gender dysphoria (although that label remains in debate).
“The biggest change from the early 2000s to now is that the age [for treatment] is dropping, for many reasons, but also because the families are realizing that there are things that can be done earlier,” Tangpricha said. “What has really advanced is the pediatric care. This is going to be more of a pediatric condition than an adult condition 10 years from now. The adult practitioners won’t be initiating hormones. They will just be continuing them.”
Tangpricha said it is not unusual for him to hear that patients and their families have driven 400 miles to see him.
“I think a lot of physicians are paying attention now,” Tangpricha said. “My wait time is so long. Now, it takes 8 months to get in and see me. That’s not right. We need more providers out there.”
Jeanette Jennings, Jazz’s mother, spoke of her own exhaustive search for a pediatric endocrinologist who would care for Jazz, who was aged 9 years at the time she first sought treatment. Several refused outright, or said yes initially, but later declined to treat. Finally, she found Will Charlton, MD, MAS, FAAP, of Joe DiMaggio Children’s Hospital in Hollywood, Florida, who not only agreed to take Jazz on as a patient, but found a surgeon willing to insert a pubertal blocker.
“It was wonderful to see this amazing doctor who changed her life,” said Jeanette Jennings, who added that Jazz was the first patient of his to receive the blocker. “I just wish there were more doctors that could treat kids like Jazz, from a mental health prospective, endocrinologist perspective, and even family practitioners.”
Managing frustrations
Jeanette Jennings recalled bringing her daughter to the pediatrician for a vaccination while her regular family doctor was away. The questions, she said, were frustrating.
“I said, ‘Did you read her chart? She’s transgender. Do you know what that is?’” Jennings recalled. “He said, ‘Oh yeah ... and started rambling on about an intersex baby. I couldn’t get a word in. I was like, ‘This is not intersex. She is transgender.’”
A few minutes later, a nurse walked in and asked when Jazz’s last menstrual cycle took place.
“I was like, ‘Didn’t we just talk about this? She is transgender,” Jennings said.
The doctor returned, she said, and had yet another question.
“He looks over his shoulder as he is about to examine her and says, ‘So, does she have a penis?’” Jennings said. “That’s the problem right there. Everybody who comes out of medical school should know that transgender youths who are living as female have penises. That’s paring it down to its basic roots.”
Insurance hurdles, too, remain an issue for the Jennings family. Greg Jennings, Jazz’s father, said their current insurance plan does not cover any of Jazz’s treatment, including the pubertal blocker.
“We want to make sure that all doctors everywhere know that they may come across a patient like Jazz, and they need to be aware of what is going on,” Greg Jennings said. “We hope the medical community will bring this to where it really needs to be. Kids like Jazz really exist and need to be treated properly. Hopefully, along with that, insurance companies will realize we need to do the right thing by these people.”
It is an issue that many transgender patients face, said Stephen Rosenthal, MD, co-director of the Disorders of Sex Development (DSD) Clinic, founder and medical director of the Child and Adolescent Gender Center at UCSF Benioff Children's Hospital and president of the Pediatric Endocrine Society.
Stephen Rosenthal
“One of the things that is so challenging for providers and certainly for families is that none of the medications that we prescribe ... are approved for use in this context,” said Rosenthal, who said he now devotes an increasing amount of time to writing appeals to insurance companies on behalf of transgender patients.
The good news, Rosenthal said, is there has been “tremendous interest” in creating programs all over the United States to address pediatric transgender health issues. The Pediatric Endocrine Society has also created a special interest group for transgender issues.
“If you don’t create an environment where there is openness, you could have a transgender person right in front of you, but that person isn’t comfortable even telling you about what the issues are,” Rosenthal said, adding that it is also important to reach primary care providers who refer to endocrinologists. – by Regina Schaffer
Reference:
Tangpricha V, Rosenthal S. Approach to the Transgender Adolescent: A Case Study of the Jennings Family. Presented at: The American Association for Clinical Endocrinologists Annual Scientific & Clinical Congress; May 25-29, 2016; Orlando, Fla.
Disclosure: Rosenthal and Tangpricha report no relevant financial disclosures.