By Jacob Rosenberg
After showing attendees a cartoon that helps clarify definitions of gender and sex, Dr. Tonia Poteat, a UNC School of Medicine professor, began an all-day conference on transgender health at UNC by diving into the numbers.
About 1.4 million people in the United States are transgender, Poteat said. And yet doctors often do not know how to serve transgender patients, contributing to worse health outcomes. The problems range from the binary of medical documents which have patients check “male” or “female” to lack of insurance for transgender surgeries — showing cracks in a medical system still adapting to gender diversity.
The conference, organized by Dr. Nina Jain of the UNC pediatric endocrinology department and the North Carolina AIDS Training and Education Center, was aimed at showing what UNC has to offer for transgender patients and spreading best practices to address some of the issues those patients face.
Spreading this knowledge of how to care for transgender patients to doctors “is going to be really important” Poteat said, “and life-saving.”
A survey of more than 27,000 transgender people conducted in 2015 showed one third had a negative experience with a health care provider. Of the 686 survey respondents in North Carolina, 26 percent said they did not go to a doctor for “due to fear of being mistreated as a transgender person.”
Poteat highlighted the lack of care alongside the need for it: 40 percent of the people surveyed had attempted suicide once in their life and nearly one in five transgender women of color were living with HIV.
Gender-affirming care — use of hormones, surgeries to change voice or sex organs — is linked to increased use of pre-exposure prophylaxis for HIV and drives down suicidality, she said.
“If we continue the current status quo, we’re causing more harm,” said Dr. Rupal Yu, a primary care clinician. “I mean, the data shows that people aren’t comfortable coming to us for even routine care.
“And gender-diverse populations aren’t just about their gender. They have Type 1 diabetes, they need appendectomies, they need dermatologic care,” she continued. “They’re humans! So, this is a population we’re ignoring.”
Despite the large population and need, most medical schools in the United States and Canada do not address transgender health issues in their curricula. A recent paper found that “lack of access to knowledgeable providers is the greatest reported barrier to care for transgender individuals.”
“[We] received zero percent of this in my training,” Yu said. She talked about how she had incorporated techniques for gender affirming care into her primary clinic practice at Piedmont Health. She said she had to research how to provide care after an increasingly gender-diverse population began walking in the door. She found resources through the University of California San Francisco’s Center of Excellence for Transgender Health and adopted standards from the World Professional Association for Transgender Health (WPATH).
Karen Isaacs, a family doctor from Wilmington, echoed Yu.
“I did what I thought was professionally right in trying to educate myself and doing what’s the safest for our patients” she said, as her practice took on more gender-diverse patients. “But I always want to try to keep up … This population is definitely at risk for worse outcomes all across the board.”
Education is one thing, but treating patients in the flesh is another, especially when it comes to kids.
Don’t tell me to wait
Arlene Davis, director of clinical ethics services for UNC Hospitals, outlined a theoretical case of a 16-year-old patient who wants to begin hormone therapy despite a parent’s objections and listed potential ethical issues: age, informed consent for therapies (of both parent and patient), delay in treatment.
“What a world of stressors to face!” she said, describing the doctor’s position. Often, Davis said, you may hear that a parent wants to wait. But she said there is “no limbo” for the patient.
“I try to remind people that the parent — or the person getting permission — might be waiting. But life goes on for that patient. All the things the patient is worried about; all the things you are worried about in the delay. Those keep happening,” she said.
“And yet, you can understand that anyone might need time.”
Jain also noted the need to recognize that delay in treatment for children is not a neutral option. She noted the many “horrible” complications and the high suicide rate in young transgender people.
“At the end of the day, for me and my colleagues, we’re pediatricians. Our oath and everything that we do is for the children — and for the health of the children. … This is care that we have to provide.”
Many hormone treatments are also totally, or partially, reversible, she said.
On Oct. 1, 2017, Jain helped start the Pediatric and Adolescent Clinic for Gender Wellness at UNC.
“We realized that we had a handful of patients that were coming to us starting to seek care. But we really didn’t have a formal clinic,” she said. A year later, the clinic has more than 70 patients.[sponsor]
Beyond treatments, Jessica Rubio, a family nurse practitioner for Piedmont Health, said medical systems can be designed to welcome transgender patients.
During her presentations, she walked through all the small ways a typical clinic visit may make a transgender patient uncomfortable: insurance cards that list another gender; having to explain to a front desk clerk the complications of your identity even as other patients wait within earshot; the binary check boxes for “male” and “female” in some medical database systems; a doctor, once realizing you are transgender, transferring patients away to a specialist even when they simply sought a checkup.
“If we’re going to put a positive spin on it,” she said, “those are the all the little, tiny places that we can work on — day-to-day, on an ongoing basis — to make it better. And that doesn’t require any expertise in this or deep level of study and training.”
This resonated for Brooke Tucker, a nurse in the UNC medical system. She was one of many who said they’d like to change how doctors gather social and geographic data.
“As soon as you click ‘female,’ they want to know when her first date of period was, is she pregnant, any hysterectomy, postpartum, anything as far as hormones, as far OB/GYN,” she said. “[But] not everyone is the textbook picture.”
UCSF recommends a two-step process that divides gender identity from sex assigned at birth.
Tucker said that ignoring gender diversity won’t stop transgender patients from coming to the hospital.
“It’s obviously something we’re going to have to deal with. Period,” she said.