ST. LOUIS — Two weeks ago, Becky Hormuth and her husband were sitting on the deck of their backyard in Wentzville, talking about how much their transgender son had blossomed since starting testosterone last December.
After years of struggling with anxiety and depression, their 16-year-old had become a positive and inviting teen who was a joy to be around. He was happy and thriving.
As a new law went into effect Aug. 28 that barred minors from starting gender-affirming medical care, they felt like they had dodged a bullet as they watched families with young transgender children expecting to need such care as they grow older move to other states.
“We were kind of like, ‘But we are still the lucky ones, right?’” Hormuth said. “‘At least we still have care.’”
Then came an announcement Monday by Washington University, which staffs the Transgender Center at Ƶ Children’s Hospital where her son receives prescriptions and monitoring: its physicians will no longer provide gender-affirming medical care to minors — even those still eligible for the treatments under a new Missouri law.
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“I felt like somebody basically just punched me so hard I couldn’t catch my breath,” said Hormuth, 52. “It was so surreal to be sitting at my desk at my office, thinking this can’t be happening.”
Parents of transgender teens and their supporters say they were devastated and caught off guard by the university’s announcement, which they first learned of in the press.
The new Missouri law prevents minors from starting puberty blockers and hormone treatment, but specifically allowed for teens who have already been receiving those medications to continue.
However, university officials pointed to a “legal claim” in the law that subjects providers to an “unacceptable level of liability” in treating patients with these medications as minors. “We are disheartened to have to take this step,” the university stated in a short press release announcing the decision.
Officials stated the transgender center would refer patients to other providers for the services, but would still offer education and mental health support to patients.
The decision has families scrambling to figure how to stretch their prescriptions or travel to see out-of-state providers. It also left them increasingly frustrated, feeling let down by a university that has been the state’s leading provider of and source of expertise in transgender health care.
The center’s doctors have been silent since ramped-up legislative attacks and investigations this year by Republican politicians seeking to restrict such care, fueled by allegations from a former case manager at the center that families were rushed into medical treatment and not informed of side effects — allegations that multiple families deny.
“I can’t tell you how infuriated I am with Washington University and their silence on the subject,” said James Thurow, whose 17-year-old stepson is transgender, “how this pillar in the community won’t stand up for its doctors and won’t stand up for its patients.”
“We need someone out there advocating for us and not leaving us trying to do this on our own and trying to educate people,” Thurow said.
University officials declined requests by the Post-Dispatch to provide more information about where families can access care, answer whether the university is considering moving pediatric transgender care to its medical facilities in Illinois or respond to frustrations by families and advocates.
Hormuth said amid the confusion about research supporting gender-affirming care for children and a slew of state legislatures voting to restrict care, now is when families need support the most.
“They need to know someone is going to have their backs, and if it’s anyone, it’s these doctors and these institutions,” she said. “They are going to have to back the research and back our kids and back us as parents and the care we need.”
‘Very disappointed’
The University of Missouri Health Care system in Columbia also decided last month it would stop providing hormones and puberty blockers for minors considering or wanting gender transition.
Christian Basi, spokesman for the university, cited a provision in the lengthy law that allows a patient to sue within 15 years of turning 21 or after the patient ceases “treatment of the injury at issue.” The law includes a minimum liability of $500,000 with a judgment that would be three times the amount of damages assessed.
The ACLU of Missouri, which is seeking to overturn the new law in court, said in a statement Thursday that the decision by the universities to block care for all adolescents was “cowardly” and “betrays the patients that have placed their health in the hands of these facilities.”
Basi said MU Health’s decision came after a thorough review and involved several administrators and medical professionals.
Mallory Schwarz, executive director of Abortion Action Missouri, which also advocates for those seeking gender-affirming care, called Washington University’s decision “shameful,” especially coming from the state’s premier research institution.
“This decision both directly harms the trans and gender-expansive young people that relied on the university for this critical care, and indirectly fuels the propaganda and medical disinformation that politicians relied on in order to ban proven and established health care,” Schwarz said.
Republican legislators argued that minors lack the capacity to understand their gender dysphoria and will eventually regret their life-altering medical decisions as adults. Instead, they say, the youths should be encouraged to seek therapy.
However, medication treatments for transgender youths — — are supported by major U.S. medical organizations.
Since allegations by the former case manager Jamie Reed surfaced in February, questions about care provided by the transgender center have been limited to the chancellor’s office at Washington University, despite an extensive media relations team for the medical school and children’s hospital that connects reporters to experts.
“They are a preeminent medical organization. I am very disappointed with how much they have silenced their team,” said Susan Halla, president of the parent support group, TransParentUSA.
Reed’s allegations prompted Republican Missouri Attorney General Andrew Bailey and U.S. Sen. Josh Hawley, R-Mo., to announce investigations into the center, which are continuing. The chancellor’s office has been tight-lipped ever since, other than issuing a few official statements.
The university also conducted an investigation of its own, , which concluded that Reed’s allegations were unsubstantiated. (Reed in response called the university’s investigation “little more than the expected self-serving finding,” and claimed the university .)
Parents say as they have tried to be sympathetic with the university’s difficult position, but the latest decision was the final straw.
“I feel like in the beginning they were looking out for kids, but as time went on, I felt like they were looking out for themselves and the institution,” Hormuth said, “and I felt like they were going to let the clinic hang out to dry basically.”
‘We didn’t see it coming’
Hormuth said she’s trying to get her son started as a patient with a gender clinic six hours away at Lurie Children’s Hospital in Chicago. Telling her son was the most devastating talk she’s had to have with him, especially after feeling so hopeful.
She assured him they would do their best to get him the medication and monitoring he needs, but had to be honest. “I can’t promise it’s not going to be a bumpy road,” she told him.
Halla, the president at TransParent USA, said members are collecting information on hospitals and clinics around the country, finding out what kind of insurance they accept, whether they are taking new patients, and how long are wait times.
“This problem is so sudden,” said Halla, of Ƶ. “Those families who didn’t think they were going to be impacted are all of a sudden impacted at a moment’s notice.”
Families need prescription refills as well as monitoring of blood work to determine proper dosage levels and how the medications are interacting with other systems or the body.
“What is happening is government has now created a forced detransition of these kids, which is dangerous to their health, unless families have a means to get somewhere else for care,” Halla said.
She said parents recently met to brainstorm ways to fundraise or apply for grants to help pay for travel and missed work, and considering working with groups like Elevated Access, which relies on volunteer pilots and their small planes to move abortion patients and, increasingly, transgender patients far distances.
Clinics across the Midwest, where many states have banned care, are saturated with patients, especially for those younger than 16.
Planned Parenthood is continuing to provide gender-affirming care, but is only staffed with specialists able to provide hormone treatments for ages 16 and older.
“At this point, we are talking about the coasts to try and get care for some of these kids,” Halla said.
Washington University officials would not say how many patients are impacted by the decision. The internal investigation summary released in April revealed 1,165 patients have sought care at the center since June 2018, including interactions ranging from an informational phone call to medical treatment.
Of those, 531 received hormone treatments, including some who had started on puberty blockers, and 67 were prescribed puberty blockers.
Thurow said his family has learned from others how to ration the small syringes of testosterone to get more than one dose out of each. He hopes that will get his stepson through until he turns 18 in July. Luckily, Thurow said, they have received care long enough to determine the proper level he needs.
“In all honesty, we are going off script,” Thurow said, which he says other families will likely have to do as well. Families are willing to do whatever they can to keep their children happy and healthy, he said. He knows over 30 families that have already moved out of Missouri.
Thurow choked back tears several times thinking of how his stepson, since transitioning, is no longer depressed. He’s happy, making great grades, getting raises at work and has a girlfriend, Thurow said. “The kid could not be doing any better.”
Mike Walk, 56, of Ƶ, has a 17-year-old transgender daughter receiving care at the center. Like others, he had breathed a sigh of relief at the legislative compromise by Republicans to allow current patients to continue care.
“We didn’t see it coming,” he said of the law’s fine print that prompted Washington University’s decision.
Walk did not want to reveal the location but said he has secured out-of-state medical care for his daughter until she turns 18 next spring.
“We are lucky that we can,” he said.
His daughter started taking hormones a year and a half ago, and he can’t let her lose access to the medications, he said. He has seen what happens when she had to present herself as boy — his happy and energetic daughter turns into a very dark and unhappy person.
“I just made very clear to her that we are going to get you through this, and you will not have to detransition,” Walk said “You can go off to college and never have to come back here again.”
Hormuth said she questions what Ƶ Children’s Hospital says is its mission: The hospital “will do what is right for children.”
“Are they?” she said. “I don’t think so. Not all children. Not my kid.”
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