Parents navigate shift in access

Judy Sombar is scared for her daughter.

Sea Sombar, a 17-year-old transgender girl who started transitioning four years ago, faced daily bullying at her previous school, which ended only after she transferred.

“If Sea didn’t get a spot in CAPA, I don’t know if my daughter would be alive,” the Mt. Lebanon mother said, holding back tears.

“It’s scary to think of my kid ending up in the river,” Ms. Sombar said.

An executive order signed in the early days of the Trump administration has added to those fears. The Jan. 28 White House mandate aims to stop surgeries and the prescription of puberty blockers and hormones for people under the age of 19 who are seeking interventions to help their bodies and gender identities align. Largely a directive to Health Secretary Robert F. Kennedy Jr. to hash out a blueprint, the order has been temporarily blocked by the courts.

Potentially impacting about 300,000 kids nationwide, the executive order has created confusion for families and hospital systems alike.

Gender-affirming care — a term that also applies to a wide range of treatments and approaches not mentioned in the federal order — has increasingly been scrutinized at the state level. From June 2022 to January 2024, the number of states moving to limit such care for minors has grown from four to 23, according to an analysis by the Kaiser Family Foundation.

Ohio and West Virginia passed restrictive legislation during that time. Pennsylvania has not, though a state bill “prohibiting gender transition procedures for minors and coverage for gender transition procedures for minors” was introduced on Monday. Pittsburgh in 2023 dubbed itself a “sanctuary city” for the transgender community.

At the federal level, under the executive order, the U.S. would not “fund, sponsor, promote, assist, or support” transition services and would “rigorously enforce all laws” that limit the specific types of gender-affirming care outlined in the order.

If the court block on the order is lifted, Medicare and Medicaid, substantial economic engines within hospitals, would likely no longer cover such services. The order refers to previously observed guidelines from the World Professional Association for Transgender Health as “junk science.”

As hospitals in the region navigate what the financial and legal implications of the order might be, parents and gender-diverse children are traversing an evolving landscape already showing signs of curtailed access.

How have medical facilities responded?

The president’s executive order underscores dire financial consequences for hospitals and medical schools that do not comply, and federal agencies have been directed to take immediate action against institutions that receive federal funding to support gender services or education. That alone appears to be having ripple effects.

“Even if they do not outright ban gender-affirming care, they could discourage providers from offering services out of fear of regulatory or financial consequences,” said Harry Barbee, a social scientist specializing in LGBTQ+ health at the Johns Hopkins Bloomberg School of Public Health.

Families may also continue to face additional barriers to care such as insurance coverage uncertainty and reluctance from clinics to offer care under the watchful eye of the new administration and a shifting legal landscape, said Mr. Barbee.

Amid so many uncertainties, some hospitals and clinics in the region are re-examining their approaches.

UPMC appears to have quietly changed its policy, numerous parents and children told the Post-Gazette, including not taking on new patients under 19 for gender-affirming care. Sea and Judy Sombar said they were told by providers at Children’s Hospital of Pittsburgh that Sea was grandfathered in for continued care, but that any prescriptions could not be altered.

After repeated attempts to get the new policy in writing, Judy Sombar said she did not hear back.

In an email, UPMC declined to comment on its policy.

An Allegheny Health Network’s Center for Inclusion Health spokesperson said it doesn’t treat many minors, but that it “has a long-standing commitment to providing inclusive, high-quality care to all populations, including transgender and gender-diverse individuals,” and that it “remains committed to supporting the comprehensive needs of these patients … while complying with all applicable laws.”

Penn State Health Children’s policy, which defines minors as under 18, is still in effect, a spokesperson said via email, and the health system is “in the process of evaluating appropriate revisions to that policy to align with the executive order.”

Penn State Health says on its website it does not offer gender-affirming surgery to minors but does provide psychological, social and medical treatment when appropriate, with the guidance of a team of doctors following standards of care outlined by the World Professional Association for Transgender Health, American Academy of Pediatrics, Pediatric Endocrine Society and other relevant organizations.

Two federal judges have temporarily blocked the executive order issued in January and two formal complaints have been filed, per a litigation tracker database, including one by PFLAG National, which has a chapter in Pittsburgh.

Similar bans at the state level have felt the push-pull of temporary blocks and appeals as well. Ohio’s ban on gender-affirming care for minors on March 18 was found to be unconstitutional by an appellate judge panel, the Associated Press reported. And legislation in Tennessee banning medical interventions has made its way to the Supreme Court; U.S. v. Skrmetti is expected to get a ruling this year.

In Pennsylvania, attempts to preclude minors from gender care have not gone far to date. A bill sponsored by Rep. Brad Roae, R-Crawford/​Erie, during the 2023–2024 session, stalled in the House. But just on Monday, Mr. Roae introduced House Bill 1033, which, in part, parallels the White House order in aiming to restrict surgical procedures and medications for minors, defined in the state bill as those under 18.

“Only adults should make adult, permanent decisions,” Mr. Roae said on Wednesday. While he said he hasn’t studied the Trump order, “I think we’re on the same page, as far as legal adults do certain things, minor children do not do certain things until they become legal adults.”

A spokesperson for the Shapiro administration said via email it would keep the Post-Gazette abreast of any comments that Gov. Josh Shapiro made regarding gender care protection in the commonwealth, but declined to provide further comment.

When care is gender affirming

While the executive order points to medication and surgical treatments, care for children with gender dysphoria — a misalignment of one’s gender identity and sex assigned at birth — encompasses an array of social, psychological and emotional resources, including counseling, vocal training and hair removal.

For Sea Sombar, that initially meant experimenting with feminine clothing, and then, in December 2020, changing pronouns to she/​her. “Being on these drugs saves lives and keeps people safe,” said Sea, who now takes a puberty blocker and hormone supplement.

A study of trans youth published in 2020 in Sage Journals found that 86% had considered suicide, and 56% had attempted to end their lives. “School belonging, emotional neglect by family, and internalized self-stigma made a unique, statistically significant contribution to past 6-month suicidality,” the report stated.

Gender services have been deemed safe and necessary for the well-being of transgender people by the American Academy of Pediatrics, the American Medical Association, Endocrinology Society and the American Psychological Association.

“Healthcare decisions should be made by patients, families, and their healthcare professionals, guided by evidence-based practices, clinical guidelines, and individual needs rather than government mandates,” the World Professional Association for Transgender Health said in a Jan. 28 statement in response to the presidential order.

At the age of 13, Sea had the puberty blocker Supprelin implanted — being able to pause the process of puberty was instrumental to the teen’s well-being. The prescription was approved by Sea’s doctor and care team with UPMC Children’s Hospital, along with the support of family, including her mother.

“It was amazing to be able to have that care,” Sea said.

Known as gonadotropin-releasing hormone (GnRH) analogues, the drugs suppress sex hormones, pausing the development of secondary sex characteristics, such as growth of breasts in women or facial hair in men.

Puberty blockers have been shown to be temporary, reversible and safe, with some considerations for bone density loss and impact on growth spurts. Such medications are also used outside of trans care, as for treating precocious (or premature) puberty and endometriosis. While FDA-approved for those conditions, use in gender-diverse patients does not have such approval; the use is legal, but considered off-label.

“Puberty blockers are something that we’ve studied for almost a half century,” said Gerald Montano, Sea’s former doctor at UPMC Children’s and now a pediatrician in Hawaii. “We use them on kids who are going into puberty too early, and in terms of long-term side effects, we haven’t seen much. These kids are not having any health problems after they stop using puberty blockers.”

The next step for those transitioning — depending on what stage of development the child is in — might be hormone therapy, to encourage secondary sex characteristics that match gender identity.

That was Sea’s path. Beginning to take the feminizing hormone estradiol at 15 has been, Sea said, was “healing” and “spiritual.”

Multiple studies have found trans people report increased quality of life, improved social function and a reduction in depression and anxiety after starting hormones.

“Estrogren is like an anti-depressant,” Sea said. “It’s life-affirming and integral. It’s like how you need to eat food and drink water.”

Gender-affirming surgery, especially among minors, is rare, according to numerous studies tracking these procedures. The greater proportion of trans or gender-diverse people opt for altering their appearances, as Sea did early on with clothing.

A 2022 Reuters and Komodo Health Inc study of both private and Medicaid insurance claims found the number of trans youth on hormone therapy and with a diagnosis of gender dysphoria from 2017 to 2021 was fewer than 15,000 nationwide.

A 2024 analysis led by Harvard and Boston Children’s Hospital researchers of more than 70 million adults and children, some transgender, showed that very few trans kids received any gender-affirming surgery at all in 2019. A majority of those were top surgeries.

Per the study, no children aged 12 and under received gender-affirming surgery, while 0.1 kids ages 13 and 14 and 2.1 kids ages 15 to 17 — both, per 100,000 — received it.

“We found that gender-affirming surgeries are rarely performed for transgender minors, suggesting that U.S. surgeons are appropriately following international guidelines around assessment and care,” said Elizabeth Boskey, one of the study’s authors, in a July 2024 news release.

Regrets rates for gender-affirming surgery is about 1%, per a review article of 27 independent studies published in Plastic and Reconstructive

Surgery-Global Open in 2021 — lower than for nose jobs and breast augmentations in the general population.

Puberty blockers can also prevent or prolong surgeries, because they give kids time to figure out what they want, said Dr. Montano. “From a practical standpoint, it prevents unnecessary surgeries ... which may have downsides.”

Impact on the trans community

Mr. Barbee, of Johns Hopkins, anticipates an increase in hate speech and stigmatization of trans people because of “broader anti-transgender rhetoric accompanying these policy shifts, contributing to mental health challenges and worsening social conditions.”

One Allegheny County mother, Barbara, said her 14-year-old trans daughter’s anxiety has worsened since President Donald Trump was re-elected — and even more since the executive order was signed. Both the mother and daughter’s names have been changed for this story because of their safety concerns.

“She came home one day [from school] and said to me that another student was saying, ‘Trump’s going to put all the trans people in a concentration camp,’” Barbara said. “She’ll say to me, ‘Mom, I’m scared.’

“All I can say is, ‘I’m scared too, and we’re going to do whatever we can to protect you.’ ”

Barbara said her daughter, Jessie, had an appointment with UPMC on Jan. 31 to get on estradiol, but when the Jan. 28 executive order came through, their provider reached out to say they needed to get the daughter’s prescription written sooner.

Jessie’s prescription was fast-tracked, Barbara said, with access to estradiol for one year. She also gets a three-month injection of Lupron, a puberty blocker. Barbara worries that her daughter will experience hiccups or a blockage in access to both medications down the line.

It’s too early to tell whether estrogen has improved her daughter’s quality of life, but Barbara saw noticeable changes in her mental health after she went on Lupron.

“She didn’t experience the stress of going through a male puberty,” she said. “It prevented a lot of things that could have been very distressing to her with her physical appearance. Doing it contributed to her mental health.”

The city of Pittsburgh has sanctuary city status codified in its laws as of 2023, stating that should gender care become illegal nationwide, Pittsburgh Police and city officials are discouraged from enforcing those laws, and that clinics cannot be subject to outside investigation or persecution for offering these services.

The mayor’s office did not respond to repeated requests for comment about the weight this sanctuary status holds and how it would enforce those policies.

“I know personally that multiple families who have already been pursuing moving either to a different state or out of this country,” said Daye Pope, cofounder of the group Coalition for Trans Youth, and a trans woman. “Pennsylvania needs to be a bulwark for our communities’ rights since our federal government will not be.”