What do doctors know about transgender healthcare? Not enough. | KALW

What do doctors know about transgender healthcare? Not enough.

Oct 1, 2018

Medical care for transgender youth is a new and evolving field. Many doctors don’t know the terminology, best practices, or how to make referrals to specialists. KALW reporter Christine Nguyen, a pediatrician herself, spent some time exploring how health professionals are learning about the medical care of transgender kids.

***The names of the mother and son in this story are pseudonyms, used to maintain privacy and due to ongoing legal proceedings.***

I meet Nico and his mom Katrina in their home in Northern California. Nico is a 15-year-old transgender boy, which means he was labeled a girl at birth, but he identifies as a boy. School is out for the summer, and Nico and Katrina are at home baking bread like they do every Friday.

Nico wears a grey sweatshirt despite the warm day. He has braces. He likes sourdough bread because of its simple ingredients.

Katrina is a small woman with a big voice. She says Nico came out to her as transgender when he was in eighth grade. Even before then, she had wondered about his gender identity. But she felt Nico needed to come to his own decisions.

“I had thought since he was like seven years old that he was a gay female. I thought he was totally going to grow up to be a tough lesbian woman, and I was like, ‘oh, cool, great,’” she explains. “But suddenly I started hearing more about the transgender issue on the news because that bathroom legislation came up. And it all just converged all at once for me.  Suddenly a lightbulb went off in my head, and I thought, ‘Wait, I wonder if Nico is actually trans and not gay?’ But I didn’t want to say anything because I didn’t want to plant a seed or make him uncomfortable.”

Though it took Katrina a while to come to terms with Nico’s transgender identity, Nico had identified as a boy for as long as he could remember.

“Growing up even from age three or four I always knew that I felt like a boy. I almost just thought of myself that way’” Nico recalls. “I was about twelve and a half when I realized I was actually transgender. It almost didn’t sink in for a while that I even was like a girl.”

Katrina remembers Nico told her that when he was little, he would lie in bed at night thinking, "Oh, I'll probably wake up tomorrow and then be the boy."

Puberty is when it gets tough

Research shows that children form a gender identity as early as two or three years old. When kids start school around age five or six, the gender differentiation becomes more of an issue if they don’t conform to stereotypical male or female roles. But it’s with the onset of puberty, which can be as young as eight years old for girls or 10 for boys, that the disconnect causes severe distress. Nico remembers when his mom got him his first bra:

"She came home one day in the end of fourth grade and gave me a running bra and I cried for three hours."

Nico wore homemade binders made of old sheets to squash down his breasts. He was traveling with his father and stepmother when he started his period and kept it a secret for two weeks.

“I didn’t tell them at all. I just told my mom when I got home finally, because I needed stuff, you know?”

I was stunned by how lonely he must have felt, not being able to turn to anyone when such a big change happened to his body. How did he manage it on his own?

With a cracking voice, Nico sighs. “Toilet paper? Yeah...yeah, it was not good.”

Puberty highlighted a conflict Nico had felt all his life. He was a boy. He assumed he was gay and turned to YouTube to find information and a community. He did follow some gay YouTubers but eventually realized through testimonials that he was trans. Around the time Nico was figuring out his gender identity, he was also having a lot of physical symptoms that frequently brought him to the doctor’s office. Every physical exam was a reminder of how his body was developing in ways he didn’t want it to.

“It always felt very uncomfortable, but I didn’t know how to express that. I was never really able to talk about it with other people. I didn’t really know how to,” he says.

The whole medical system made him feel misunderstood. Without a legal document, his medical records had to continue to list him as female. All the medical labels, medical assistants who called him into the exam room, and official results used his legal name, not his new masculine name. Nico recalled an interaction with a radiology technician during an ultrasound to check for appendicitis.

“My mom was explaining to the person who was doing the ultrasound, ‘His pronouns are he and him, even though it says on your sheet female. And this name, that’s not the name you should use,’ and the lady was like, ‘Hm. Okay. Maybe I’ll try.’” In his state of pain, he felt powerless.  

“I mean, there wasn’t much I could do in that situation.”

The elephant in the exam room

Many studies show that transgender kids avoid basic medical care because of past rejection or discrimination by medical professionals, and a system that presumes traditional gender norms.

For me, that’s both unsurprising and unsettling.

As a pediatrician, the first time I met transgender kids in the office, it was awkward. I wasn’t even sure what the term trans meant. I tripped on what pronouns to use when talking to the family. I tried to work around it by saying the patient’s name, or “you.” I’ll even admit I was skeptical of these kids. Children go through developmental phases, and I wondered if these trans kids’ feelings of gender misidentification was just a developmental phase that would pass.

Trans kids who’ve been surveyed say when they seek healthcare, some of the most frustrating barriers are health workers who confuse gender identity with sexual orientation, silence that comes across as disapproval, and the inconsistent use of pronouns.

When I asked colleagues for advice on standards of care for taking care of trans kids, I was often be told “someone else” might know something. But finding that person wasn’t easy.

Many US medical schools still don’t talk about transgender health. There are no official requirements. When I asked other mid-career physicians whether they had ever received any education in transgender health, the overwhelming answer was "no." A 2011 study showed that a third of US medical schools had 0 hours of LGBT education during clinical training.

The lack of training may be a bigger problem for pediatricians and family doctors. Kids are more likely to report they are transgender or questioning their gender than adults.

Katrina and Nico remember an office visit with a surgeon to discuss “top surgery,” to remove breast tissue. The doctor’s entire team entered the room.

“A trans person doesn’t even like to look at their body themselves when they’re alone in a mirror,” explains Katrina. “Let alone they’re gonna have to show the doctor, let alone three other people on the team, plus they brought in a nurse and then they brought in a scribe to be taking notes on the computer.”

So Nico was sitting there, humiliated and embarrassed as a group of people talked about him. It got worse.

"The scribe was using my wrong name and wrong pronoun."

Katrina clearly remembers how bad she felt for her son during the whole 7-minute ordeal.

“There’s suddenly five people in the room and he has a gown on, and instead of using the term ‘chest,’ which is what you use with a boy, because Nico’s a boy, the doctor was using the word “breast,” and then you know opening the gown, and talking about the breast and touching the breast.”

Nico whispered to his mom to ask if he could leave, and after a mutual glance, they grabbed their clothes and walked out.

“It was pretty humiliating because it sort of felt that they were looking at me sort of like this new thing,” he remembers. “They probably hadn’t interacted with other trans people before or people who were getting this particular kind of surgery, so they were interested and curious but kind of in the wrong ways. It felt very much like I was sort of a spectacle.”

Nico’s story reminded me of a patient of mine, a transgender girl. It took months before she came out to me. We were glad to finally acknowledge the elephant in the room, but when it came time to examine her, I didn’t want to call attention to the parts of her body that still looked like a boy, so I avoided that part of the exam.  

To be fair, medical schools have a lot to cover and have to prioritize their curriculum to what future doctors are most likely to deal with. Less than 1 percent of people in the US identify as transgender. But despite the small percentage of patients who are transgender, most doctors will end up caring for transgender patients. And most doctors want to know more. A 2017 study showed that almost 100 percent of internal medicine residents thought that they needed to know about transgender medical issues. Less than half had received any education.

Patients are guiding doctors in the search for answers

But things are starting to change. UC San Francisco’s medical school has developed a comprehensive program to train new residents and nurse practitioners. At Stanford Medical School, medical students can take electives in gender clinics.

Dr. Mitch Gevelber, a pediatrician specializing in adolescents, works at Santa Clara Valley Medical Center in San Jose.  As the county hospital, a majority of Valley Medical Center’s patients are on Medicare, managed care, or Medi-Cal, California's Medicaid program serving low-income residents. For Dr. Gevelber, meeting several transgender teens around 2013 made him realize there was a gap in his medical expertise. He remembers a transgender girl in the juvenile hall system who wanted to start to transition. She needed a primary care doctor, and Mitch was assigned to her care.

“I was fairly uncomfortable with that idea because I really didn’t know what to do or how to do that care,” he remembers.  It wasn’t that he was opposed to the idea of the patient being trans, but he felt he didn’t have the experience to manage the patient’s care.

“I was willing but not very much able,” Gevelber admits. “It just seemed like something that I should be able to help with, and not necessarily just throw up my arms and admit I didn’t know anything.”

There are now about 40 comprehensive child and adolescent gender clinics in the US.  The field, known as child and adolescent gender medicine, is very new. The first center in the US was established in 2007. But access to these clinics isn’t always easy. There are long wait lists, they are only in certain geographic areas, there are insurance exclusions, and sometimes the general pediatrician is the gatekeeper to more specialized treatment. So eventually, Dr. Gevelber started an ad hoc gender clinic in San Jose, with guidance from his patients.

"Many transgender folks share the story of having to educate their doctors," Dr. Gevelber says.

He remembers another one of his transgender patients wouldn’t take ignorance for an answer.

“She held me to a very high bar and would almost tease me about my limited knowledge.”  Another patient took on the role of an educator.  “She was incredible about saying, ‘you can do this, we’re going to do this together.’ She kind of guided me as well through the process. And then I started to see a couple other trans patients and then a couple other and a couple more, and then I started to go conferences”

Voluntary, additional trainings like conferences, lectures, and workshops are where medical professionals have to seek out best practices. These are sometimes organized by advocacy groups that aim to fill gaps in our medical training.

The Genderbread person helps explain anatomy, gender identity, gender expression, and attraction.
Credit Courtesy of genderbread.org

But care for transgender kids does not only involve medications or surgeries. There are many basic, practical logistics:

Many medical forms require that you check male or female—what if the answer is neither?

What if one parent supports the child’s transgender identity and the other parent doesn’t?

How do you do a physical exam on a kid who is uncomfortable with how their body is developing?

Wrestling with medical ethics

The American Academy of Pediatrics and other medical societies endorse the gender affirmative model of care, which means supporting a child to be the gender they feel is most authentic. But that position does have its skeptics. Dr. Gevelber recalls one of his patients had seen another doctor who didn’t understand the boy’s desire to transition.

“A kid the other day was sharing their experience of telling a doctor and the doctor replying ‘but you’re such a beautiful girl, why would you want to do that?’

That other doctor wasn’t supportive, but Dr. Gevelber can at least partially see why the doctor felt uncomfortable.

“Parents, doctors, people struggle with when you make physical changes to bodies that are healthy and appear normal. It becomes challenging.”

For transgender kids, the developmental, psychological, and medical issues are more complex than for adults. Kids, especially younger kids, may change their minds, so taking medications to block the onset of puberty can buy time to decide if their gender identity is persistent. But the next step, having surgery or taking cross-sex hormones—which means anatomically female patients taking testosterone to masculinize their bodies, or anatomically male patients taking estrogen to feminize their bodies—can be ethically difficult. Dr. Gevelber recalls what another doctor asked him.

"The question (which) was raised is, 'If I'm going to remove normal tissue from a normal healthy person, that's pretty uncomfortable.'"

Some treatments are reversible or partially reversible. For instance, if an anatomically female patient takes testosterone, facial hair growth will stop when the testosterone stops. However, if the testosterone deepens the voice or makes the jaw more prominent, those effects may be harder to reverse. There are side effects from long-term use of estrogen we may not even know about yet. Examples include the risk of blood clots and cancer. Transgender women may be at higher risk for osteoporosis. Transgender youth may not think about preserving fertility. Other treatments, like surgery, are irreversible.

In 2015, the National Institutes of Health started a five-year study to look at long-term outcomes of medical treatment for transgender youth. The University of California San Francisco Medical School is one of four national study sites. For Dr. Gevelber and other pediatricians, the information from this study will give systematic national data; right now, much is anecdotal.

Outside the exam room

Over homemade sourdough bread, I shared with Nico my initial awkwardness with trans kids. What would have been his advice?

“It’s true, if you haven’t had a certain experience, how are you supposed to know?” he tells me. “I think the best thing to do is listen, and just treat them like any other human being really, cause that’s all they are.”

I leave through a hallway filled with Nico’s childhood artwork and photos. I wonder if a picture of a little kid in overalls is Nico.

“That is his brother,” Katrina corrects me with a laugh. She points at another picture.

“This is a picture in my entryway here of Māhū, which is someone in native Hawaiian culture who encompasses both male and female. I saw this even before Niko came out as trans.” 

Māhū is male on one side, and female on the other.

"I put that right in the entryway because I feel like it sets the tone for what I want my home to feel like," Katrina says.

Research shows education can change doctor’s attitudes towards gender nonconforming kids and their willingness to take care of them. Looking at the picture of Māhū, I got that.

Every patient has subtle differences. Their bodies have not read the old textbooks. Medicine is a constantly evolving field.

If we follow the lead of our young patients, we may yet change our traditional concepts of gender.