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Scripts for Puberty-Blocking Drugs Fell After State Bans

— Declines aren't dramatic, but trans kids and healthcare providers are facing secondary challenges

Last Updated May 17, 2024
MedpageToday
A photo of the Dennis R. Neill Equality Center in Tulsa, Oklahoma

This article was produced as part of the 2023 Data Fellowship.

For Andi Gunter, the health clinic manager at the Dennis R. Neill Equality Center in Tulsa, Oklahoma, calls from parents of transgender kids seeking medical care hold some extra weight. Gunter started off volunteering at the resource center, which serves the LGBTQ+ community in the state, when her own child came out as trans.

"They're feeling desperate for their kids, because they need that care for them, and they can't find it locally," Gunter said.

Before Oklahoma and 23 other states passed legislation to ban gender-affirming care for youth, she'd refer parents to a handful of providers who could help, since their clinic only sees adults. "It was a much easier conversation to have," Gunter said. "Now, our conversations are, 'I'm so sorry. There's no one here in the state of Oklahoma to help you.'"

Successive state bans on gender-affirming care for youth have proven both burdensome and confusing in a landscape that was already hard to navigate. But these laws haven't only stopped providers from treating kids with gender dysphoria; they've impacted access to care in additional, unexpected ways.

According to a ľֱ analysis of prescription medications from Symphony Health, a national database that claims to capture 85% of commercial prescriptions and three-quarters of mail-order and specialty prescriptions, new prescriptions for puberty-blocking medications have fallen since bans have been enacted. (Click here for a deeper explanation of the methodology used in the analysis.)

Counting only the prescriptions from pediatric physicians across the U.S., new prescriptions for major medications used to delay the onset of puberty went down, from 16,349 in 2022 to 14,738 in 2023. Total overall prescriptions for these also went down, from 34,671 to 29,976, the analysis found. (Wyoming was excluded from the analyses as it had no numbers reported in 2023.)

That translates to a 9.85% decrease in new prescriptions and a 13.5% decrease in overall prescriptions. One might expect this to be higher, considering nearly half of U.S. states have banned this kind of care, including in two of its most populous states, Texas and Florida.

In 11 ban states, comparing just the 4 months before the month of the effective ban to the 4 months following, the total number of doses of these drugs went down by almost 8.7%. The total number of new doses went down by 5.53%.

There are a few potential explanations as to why the declines aren't more substantial. One could be the long lag time between doses for these drugs -- injections of gonadotropin-releasing hormone agonists are generally given every 3 to 6 months -- or the time allowed by state laws for providers to "wean" patients off of puberty blockers. Some states allow children to continue treatment if they are already on it, but prohibit new prescriptions.

It's also possible that a big proportion of these medications were not captured in this analysis, if they were prescribed by non-pediatric specialists like family physicians or nurse practitioners.

It could also be that youth and families are finding ways to get their treatments despite state laws. Some experts have made comparisons to abortion bans: people who want something badly enough will find ways to get it. As a result, a host of other hardships have emerged for patients and providers of gender-affirming care.

Transitioning to Travel

ľֱ interviewed more than 17 clinicians, parents, youth, researchers, and advocates across nine states to better understand the effects of the bans.

Many patients and families have responded by venturing out of state. "Our closest known place is possibly Kansas. And then from there, it's New Mexico or Colorado or someplace like that," said Gunter, of the Oklahoma center. "And most people don't have the means."

Molly McClain, MD, MPH, a family medicine specialist and associate professor in the Department of Family and Community Medicine at the University of New Mexico in Albuquerque, told ľֱ, "We started allowing people from Texas to come, and it's pretty heartbreaking to hear their stories."

Her office had a waitlist over 100 people long, she said -- almost all from neighboring Texas. One family traveled from as far away as Florida. Another went so far as to buy a house in Albuquerque for the New Mexico address, not knowing if this was a requirement to access medical treatment.

All of these patients, McClain said, paid out of pocket -- even if they had health insurance.

"They would like their kids to be able to get access to gender care, but they also don't want to go to jail," she said. "I think right now there's so much unknown about what would happen if they got caught that they just don't want to risk it, but people are terrified."

But not everyone can easily travel for a doctor's appointment. Meredithe McNamara, MD, MS, an adolescent medicine specialist and assistant professor of pediatrics at Yale University in New Haven, Connecticut, told ľֱ, "Leaving your home state is kind of a luxury that few people can actually afford, and ... trans youth of color, trans youth in rural settings, who don't have adequate financial means, are the ones who are not seen right now in any clinical setting."

Chilling Effect

ľֱ's analysis of prescription records also found that in 37 of the 49 states, or roughly three-quarters of U.S. states, the total quantity or "doses" of puberty-blocking drugs dispensed by pediatric specialties decreased from 2022 to 2023. This is 13 more states than the 24 that have bans in place.

These decreases, in most cases, represent very small numbers. The states where new prescriptions had the biggest percent decreases were Oklahoma, Alabama, and Iowa (with absolute decreases of 17, 9, and 5 new doses over a 9-month span). It's possible that these were multiple doses for an even smaller number of patients.

This could be, many providers said, because of an overall chilling effect on gender-affirming care.

"Independent of legal restrictions, some medical institutions have pushed providers to limit treatment of transgender youth even in states without restrictions," said Joshua Safer, MD, executive director of the Mount Sinai Center for Transgender Medicine and Surgery in New York City. "The fear at some institutions is that they will be targets of harassment."

McNamara echoed this: "A lot of individual providers are just deciding that it's not worth it to practice this care in the current climate."

'Driving It Underground'

Providers of this care are also taking it underground, some sources said. Christopher Bolling, MD, is a retired pediatrician. He testified on behalf of the Kentucky Medical Association and the Kentucky and Ohio chapters of the American Academy of Pediatrics in front of Senate and House committee members in both state legislatures last year, against their respective house bills banning gender-affirming care for youth. Both became law.

In one of these meetings, Bolling said an Ohio legislator asked if kids would be able to get drugs used in gender-affirming care on the internet.

"There were groans," Bolling told ľֱ. "I'm like, 'What do you think, Senator?' I mean, what do you think? Me, I go to a gym. Do people take testosterone that they shouldn't be? Yes, they do."

According to one doctor who asked not to be identified because of concerns about legal repercussions, clinicians are taking matters into their own hands.

"Doctors who seek to practice ethically and offer evidence-based care to their patients or transgender neighbors have had to create networks of inter-institutional collaboration that are not discoverable," the doctor said, "so that patients can get care that they've come to depend on and benefit from."

They added that occasionally, when families or patients have reached out from states like Ohio, Florida, or Texas, "I might have to move those conversations to a non-discoverable way, like phone calls, et cetera, just so that I can support those patients without leaving a paper trail that could be subject to a subpoena."

Staying Silent

Bans on gender-affirming care in dozens of states don't just restrict providers from treating patients. Many are also forbidden from speaking publicly about gender-affirming care by their employers, Bolling said, further hindering an exchange of reliable information.

Almost all of ľֱ's requests to providers and major medical centers in early ban states, including in Alabama and Oklahoma, were either declined or left unanswered.

"Kentucky and Ohio and the children's hospitals, they put gag orders on their physicians because the legislatures can penalize them and threaten them," Bolling said. "The legislators will say, 'Well, we'll cut off your funding, University of Kentucky, if you come in here and start advocating for this.'"

Bolling says he can speak freely on these matters because he isn't beholden to an employer. "It takes people like me who are like, 'I don't care.' I'm retired and I'm a public citizen."

Beyond Banning Care

Laws aren't limited to the administration of puberty blockers or hormones. As of January, eight state laws punish anyone who "aids and abets" the provision of gender-affirming services out-of-state, or who refers patients to other providers, a analysis found.

There have also been attempts to subpoena records of trans patients in states with no ban. Most recently, Texas Attorney General Ken Paxton sought medical records from Seattle Children's Hospital. (The hospital sued, and a settlement stipulates it .)

Providers say it is only a matter of time until bans creep into gender-affirming care for adults. In fact, several states already prohibit the use of public funds for gender-affirming care, or are attempting to limit it in other ways.

Frances Lim-Liberty, MD, is a pediatric endocrinologist and medical director of the Pediatric and Adolescent Transgender Program at Dartmouth Health Children's in New Hampshire. No bans have been passed there yet, but Lim-Liberty said a through the legislature would, if made law, prohibit doctors like her from making referrals to gender-affirming surgery until age 18.

Although Lim-Liberty and other clinicians said almost no doctors perform surgery on those under 18, she said a law like this would limit the types of conversations she can have with patients -- say, about top surgery after they turn 18.

"It's important to know the different options that are out there," she told ľֱ. "... And when we start to limit what we can talk about, when we start to limit who we can refer to, it limits the choices for families."

Lim-Liberty said she fears for the safety of her patients. "I know that happened in Oklahoma. I know that happened in Florida. I know that happened in Texas, but we'll be safe here," she would reassure families. "I used to be able to say that. And now I can't say that."

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    Sophie Putka is an enterprise and investigative writer for ľֱ. Her work has appeared in the Wall Street Journal, Discover, Business Insider, Inverse, Cannabis Wire, and more. She joined ľֱ in August of 2021.