What are the impacts of state laws banning gender-affirming care for youth? My reporting sought answers.

In a span of a few months in 2023, state after state passed unprecedented bans on gender-affirming care for youth. I knew I wanted to write about it and use data to shape the story. So much was still unclear about the actual effects of these laws on gender-diverse youth.

I had led an earlier mapping project to illustrate for our audience of physicians at MedPage Today what the penalties were for providing this kind of care by state, but I wanted to investigate what effect these bans were already having on youth, families, and the networks that support them. I felt it was critical that health care professionals, many of whom mostly read clinical news on our site, understand what patients themselves were going through. In addition to patient stories, they might also look for “hard data” and perspectives from other clinicians in gender medicine.

My initial plan was to work with an organization that had already agreed to share data with us on insurance claims for gender-affirming care in those under 18, and how these claims had changed in recent months The problem was, my editor and I hadn’t been specific enough about what form the data would take.

Lesson 1: Know what data you’re looking for on the most granular level.

Before I built up my data skills through the 2023 Data Fellowship, I hadn’t known to ask this organization, which works with insurers and millions of health claims, for individual-level data, or raw data. I did not understand how insurance claims data were recorded, and that a patient (de-identified because of HIPAA) would have to be linked to a specific service or billing code (gender-affirming care, which encompasses hundreds of service codes) related to a specific diagnosis (gender dysphoria or gender identity disorder, more codes), within a certain time frame, with age and location. I also did not know how sensitive such data would be, or that a nonprofit might not be allowed contractually to share it. 

Assuming we wanted topline findings from their data to use in a story, the media rep for the organization made a map for us with their own analysis, in an attempt to answer our question. However, their methodology wasn’t clear, and without manipulating the raw data myself, I couldn’t be sure where their findings came from. They would not share the original data. So began a months-long search for a similar health care analytics company that would. That turned out to be a dead end, too. 

Lesson 2: Have a plan C.

After months of no luck and still without a data set, it was time to pivot. My publication has access to a vast prescription database with updated information, and earlier on I had considered pulling data about medications related to gender-affirming care. Hormones were out (they were used for all ages, for many indications), so I got a list of puberty-blocking medications from a researcher and ran a search on prescriptions for the last two years, by state.

Methodologically, this wasn’t perfect — it wouldn’t paint a full picture of the range of services gender care encompasses. But I figured if I saw a big dip in prescriptions, it could be attributed to bans. 

I was nervous about using only data from puberty blockers for a story, because it’s arguably the most controversial aspect of gender-affirming care for youth. It’s also used in a very tiny number of patients. But some interesting numbers emerged, and as I talked to more sources, a much larger story came together. 

Lesson 3: Listen, really listen, to your sources.

I spoke to people practicing in the field of gender-affirming care, in addition to staff, families and patients with real lived experience. So much of the opposition to this kind of care comes from parties and interests that have never worked in the trans community. These stories, I hoped, would be shaped by those within it. 

I anticipated some of what I ultimately heard in interviews with physicians, support staff, and families — that health care was being endangered, that patients were taking long trips out of state to access hormones and other care, that parents were frustrated, and doctors were worried about their patients. But other points ended up taking me completely by surprise. 

It was in that final question many of us ask in their interviews — “Is there anything else you’d like to add?” — that the most unexpected answers arose. 

For a story on how New Mexico was protective of trans youth and their health care, I spoke to a 19-year-old who had transitioned during the pandemic. Yes, he told me, health care here is more accessible to him in this state than in many places. But it still had a ways to go. For example, no matter how accessible a doctor or drugs were, medical visits as a trans person were still uncomfortable. Routine gynecologic visits were unnecessarily gendered — walking into a “women’s clinic” felt awkward and alienating. Clinicians would often tie unrelated medical issues — in his case, a clavicle fracture — back to the hormones he was taking. His friends had experienced similar frustrations. He told me something I’d hear repeated in at least four interviews: training for how to provide high-quality medical care to trans people was badly needed, and not just in “ban” states but everywhere.

Unexpected takes from clinicians on common news tropes also enriched the story. They didn’t deny the accounts of people who “de-transitioned.” But they posited that there was a disproportionate emphasis on a handful of people who had received really poor medical care. Bad care can, and does, happen in every field of medicine. What was overshadowed in some state legislatures, I heard a number of times, were the many, many more parents and patients who were begging for gender-affirming care to simply be allowed. 

Those comments ultimately led me to a third piece about misconceptions about gender-affirming care, which was a collection of direct quotes. 

I was hoping that with a collection of accounts from real people and experts, the disconnect between the state bans and the lived experience of trans youth and providers would emerge clearly. In standard gender-affirming care, family support is prioritized, thorough assessments prior to care are routine, and side effects are described and monitored closely. 

Most of all, doctors and parents were extremely frustrated by a wave of new laws that create huge obstacles for their patients, and vowed they would continue to try to provide and obtain care any way they could.