Accessing transgender youth healthcare (Columbia)

Written for the M.A. Science reporting program at Columbia Journalism School. This is an excerpt from my Master’s thesis: a 10,000-word piece of narrative non-fiction about transgender youth healthcare.

In 2018, Dale opened a letter from the family’s insurance company and found out that Adi’s top surgery was not approved. Her heart dropped as she considered what this would mean. “I won’t say I was super excited about top surgery, but Adi needed it. And he needed it immediately,” she said. After starting to present masculine, Adi seemed confident about his direction in life, but his day-to-day anxiety almost got worse. He was stuck in an ambiguous phase where he could not quite pass as man nor woman. People misgendered him constantly. In public, Adi got strange looks and was often bullied or scolded. “The bathroom issue was huge,” Dale said.

When Dale told Adi he would not be getting top surgery, the child had “panic attack after panic attack.” Because Adi was a minor, he had to meet specific requirements made by the family’s insurance plan, regardless of what doctors and parents decided. Under the family’s policy, trans boys had to be on testosterone for two years before top surgery would be reimbursed. Yet Adi had not started hormones.

When I asked him why, he cited Maslow’s hierarchy of needs, a psychological theory that describes human motivation; at the base are physiological needs, like food and water, and at the top, personal development. Humans must satisfy each level before moving up to the next tier of ambition. Adi considered top surgery the foundational need for his gender-identity. It was his biggest barrier to passing as male. Until he achieved it, he had no mental space to consider testosterone. He recalled being plagued by the thought, I have boobs and this is not cool.

Compounding the issue, his binder was painful, mainly because his chest was so large. One of Adi’s trans masculine friends wore his binder around the clock, even while sleeping; Adi could only handle the few hours he was at school. The binder caused so much compression that he got winded easily and struggled to walk. At home, when Adi took the binder off, he spiraled downwards. Dale spent many evenings consoling him, sitting by her son’s side and listening, as he sobbed uncontrollably.

For families, accessing trans healthcare services is incredibly challenging. There are simply not enough trained providers in gender health, meaning families face long wait times, or risk seeking services from physicians who are unqualified. In some parts of the country, options are not only limited but are under grave threat. Legislators in over twenty conservative states—most infamously, Texas—have put forth bills to outlaw transgender youth healthcare outright.

Even families who can access holistic gender clinics, like Dale and Adi in Los Angeles, face enormous roadblocks through their insurance plans, many of which have trans-exclusionary policies. Coverage requires a great deal of administrative labor on the part of the families, only to be frequently denied. A 2019 study from Transgender Health reviewed the most commonly used insurance plans at Children’s Hospital of Philadelphia. Not a single plan covered all recommended services for gender-affirming care, and about 50 percent excluded at least one type of treatment. This is echoed in insurance denial rates for transgender adults. The National Transgender Discrimination Survey found that 50 percent of trans adults reported denial of coverage for gender-affirming surgery, and 25 percent were denied for hormones. Insurance plans are meant to cover elective surgery that is medically necessary11. Yet trans people are often cast aside.

For Adi’s top surgery, Dale and Dario could not afford the $10,000 cost out-of-pocket. With no other options, they prepared their child to wait until his eighteenth birthday. Dale reassured Adi that time would fly. It’ll go by fast, she told him. They’ll get through this together. Yet in her head, she recalled thinking, It’s all bullshit. It’s going to go by slow. It’s going to be awful.

With the advice of a therapist, Dale helped Adi make a countdown calendar to keep his top surgery in sight. They took huge sheets of paper and made a row for each week, more than seven hundred squares in all. Each day, Adi colored in one. He made one row light blue, the next one light pink, and the following one nearly white. The three rows comprised one half of the trans flag. Then Adi scrapped the calendar in fit of frustration. “I literally didn’t want to live in my body anymore. I didn’t care if three weeks had past,” he said. Dale worried that her son wouldn’t make it.

One day, she mentioned this at Adi’s gender therapy appointment. The gender therapist responded with an unofficial tip. Many families had hit the same roadblock with insurance, he said. Some were lucky enough to bypass it. He thought Adi could be one of them. When Adi had originally come out, he told his parents that he didn’t feel like a girl nor a boy, what is known as non-binary. The family changed his medical records to reflect this, but they had not yet changed it to read “transgender.” In their insurance policy, only trans teenagers needed to be on hormones preceding surgery. Non-binary minors did not. Written in a blank on a form and then forgotten, the word “non-binary” became the family’s last hope.

Dale appealed to their insurance company, arguing that her non-binary child wanted surgery, but never planned on taking testosterone. It worked. Adi’s operation would be reimbursed. Next, they needed to get a series of doctor’s notes to confirm the procedure was a medical necessity, opposed to cosmetic, which is another way in which health insurance can delay coverage. Dale hustled to get letter appointments with the required providers: the primary care therapist, the primary care pediatrician, and the head of their healthcare consortium’s gender care program. Once approved, the family made a consultation with the surgeon and, finally, received a date. The process took several months.

After many false starts and setbacks, Adi got his surgery the fall of that year. When the operation finished, doctors invited Dale to the recovery room. The first thing she saw was her son in the hospital bed, crying. Immediately she thought that she had made a mistake. But then Dale realized that her son was crying tears of joy. She, too, broke down in relief. “I just knew in that moment, I had made the right decision,” she told me. “He had the world lifted off his shoulders.”