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ORLANDO -- There are far too few physicians in U.S. that are qualified to care for transgender patients, according to presenters here.
In addition, several factors make it difficult for transgender patients to get needed care, including biases, lack of knowledge and insurance coverage, and a dearth of approved drugs, said experts in a session at the American Association of Clinical Endocrinologists (AACE) annual meeting. The panel included Jazz Jennings, a 15-year-old transgender girl, LGBTQ activist, and YouTube star.
"We have a core of practitioners in this country doing a great job" at treating transgender patients, said Mack Harrell, MD, an endocrinologist at Memorial Healthcare System in Hollywood, Fla., at an AACE media briefing. "What we don't have is broad awareness; I want everyone else to see that a transgender adolescent person is a person."
Jennings and her parents, Greg and Jeanette Jennings, talked about their experiences -- starting when Jazz was 8-years-old -- seeking medical care for their child. They already had a family endocrinologist because they have twins with Hashimoto's disease, but he refused to examine Jennings. Then they found another doctor who initially agreed to see the child, but later backed out.
Another physician eventually examined Jennings at age 11, and she was ready for puberty blockers, such as gonadotropin-releasing hormone agonists. However, they couldn't find a surgeon that was willing to implant the blockers. Eventually, they found a physicians in their home state of Florida who agreed although it was his first time performing the procedure, according to Jeanette Jennings.
Jazz Jennings said she knew she was a female as soon as she was able to express herself. "I would be devastated without the blockers," she sad. "I've been on estrogen for 3 years, and I'm developing, and I think all kids should feel that way." She said she expects to undergo sex reassignment surgery in a couple of years.
"Nobody has all of the expertise when it comes to care of transgender adolescents," said Steven Rosenthal, MD, of the University of California San Francisco (UCSF), during the AACE session. "But we don't have to understand all of the mechanisms to provide empathetic care."
Rosenthal helped create the Child and Adolescent Gender Center at UCSF.
Vin Tangpricha, MD, PhD, from Emory University in Atlanta, agreed that there is a shortage of physicians who are adept at working with transgender patients. He said patients have to wait about 8 months to see him, and drive long distances for their appointments, "and that's not right."
Tangpricha is a co-author of an Endocrine Society clinical practice guideline for the endocrine treatment of transsexual people.
The training physicians receive in medical school for working with transgender patients is "not very good," he added. For instance, Emory offers hour-long lectures on transgender health issues during lunchtime. "The fact that we have some [training] means that we're ahead of the curve," Tangpricha said.
While some insurance companies have become willing to cover transgender-related procedures and medications, many still don't offer coverage, Rosenthal noted, and treatment can be expensive, ranging from $34,000 to $43,000 per year of quality of life for the first 5 years, according to one study.
Jeanette Jennings said the family went to Europe to obtain a histrelin (Vantas) implant at a "discounted price" because their insurance wouldn't cover the cost at the time.
"Eventually there's going to be pressure on insurance companies to cover transgender care, if they aren't already," Rosenthal pointed out.
Rosenthal added that the medications he prescribes for treating transgender youth are off-label, but over the the last couple of years, he's been working with drug companies to obtain approval. As more transgender adolescents seek care, market forces will push for a change in coverage, he said. However, one stumbling block is that there's no long-term safety data on using blockers in this population, he added.
AACE will release guidelines for caring for transgender patients later this year, according to Glenn Sebold, AACE director of public relations.