Every time Robert Skrezyna gets a new message from his child’s medical provider, he braces himself for bad news.
He worries that any day now, Lurie Children’s Hospital is going to follow the lead of other Chicago-area hospitals and tell him it’s no longer providing gender-affirming care to kids — teens like his 15-year-old daughter, Chloe, who relies on hormone therapy.
“She’s not going to go back to being a boy because she never was one,” said Skrezyna, noting Chloe knew she was a girl from a very young age. He spoke as Chloe, smiling, ran to different activity stations at a family field day for transgender children and adults at a Lombard park on a recent, sunny fall day.
He now worries about her happiness falling apart. If gender-affirming care were no longer available to teens, “I’m honestly afraid I’d have one less kid,” Skrezyna said.
Since President Donald Trump took office this year, hospital systems across the Chicago area have been pulling back on gender-affirming care for minors, leaving transgender youth across the state scrambling to find services, and their parents terrified. A small group of advocates and independent providers has been working to fill the void in Illinois, but even those doctors’ numbers have been dwindling in recent months amid fears of consequences from the federal government.
The shrinking options are leading to lapses in care for some kids who were already in the midst of treatment, parents say. Other children and teens are facing delays in starting or receiving care that is time-sensitive and important to their long-term mental health, advocates for access to care say.
“We are facing a health care crisis for these kids,” said Asher McMaher, executive director of nonprofit advocacy group Trans Up Front Illinois.
Before Trump took office, McMaher could typically refer families seeking gender-affirming care for kids to any of more than 100 medical providers throughout the state. That care included a range of services such as puberty blockers, which are medications that delay puberty; hormone therapy, which can help individuals develop male or female characteristics; and surgeries to remove the breasts or alter genitals.
After Trump took office, the situation changed dramatically.
Trump issued an executive order in January that threatened to pull federal funding from providers that offered gender-affirming care to people younger than 19, calling such care “chemical and surgical mutilation.” A White House spokesperson said in a statement: “President Trump was elected with a resounding mandate to restore common sense and end child mutilation. The Administration is committed to delivering on this overwhelmingly popular mandate.”
Shortly after the executive order, Lurie Children’s Hospital announced it would stop performing gender-affirming surgeries on people younger than 19, though it continues to provide other types of gender-affirming care. Soon afterward, Rush University System for Health, UChicago Medicine, UI Health and Advocate Health Care all pulled back their pediatric gender-affirming care to different degrees.
McMaher’s once-fat Rolodex of options for gender-affirming care for kids and teens shrank rapidly.
Now, there are only 20 to 25 practices in Illinois that will provide gender-affirming care for kids ages 16 to 19, McMaher said. Illinois has about 10 practices now that will provide care for younger kids in need of puberty blockers, McMaher said.
Before Trump took office, Illinois had about 40 practices that would perform gender-affirming surgeries on teens, McMaher said. Now, there are three independent doctors that will perform top surgeries on people younger than 19, and none take insurance; they all require patients to pay out-of-pocket, McMaher said. No Illinois providers perform bottom surgeries anymore for people younger than 19, McMaher said.
McMaher said each month they hear of more providers ending their gender-affirming services for minors in Illinois — a situation that has left many Illinois families unsure of where to turn.
“We get calls saying people are afraid they’re going to lose their children,” McMaher said. “It is devastating to watch your child terrified of losing care.”Many of the hospitals that pulled back their care this year issued statements, as they did so, emphasizing that it was a difficult decision. Some said, at the time, they made the decision in order to preserve care for all patients. Rush, UI Health, Lurie and UChicago Medicine all declined to provide further comment for this article. Advocate also did not provide comment.
‘Upsetting’ news
In July, a South Side family received exactly the type of MyChart message Skreznya fears. The family has been reeling ever since.
The family’s 13-year-old was away at summer camp in mid-July when his mother saw the message informing her that UChicago Medicine would no longer provide gender-affirming care to pediatric patients.
“We understand that this news is upsetting,” the message read. “This is in response to numerous indications from the federal government that funding which supports a wide variety of patient care services is at risk. Anticipated actions by the federal government would prohibit us from caring for all Medicare or Medicaid patients, which make up the majority of the patients we serve.”
Within a few days, the mother was able to talk with one of her child’s providers at UChicago Medicine.
“She was basically like, ‘I have no referrals for you. I don’t know where you can go. I’m as devastated as you are about this,’” she said. “She literally had nowhere to point us.”
After years of gender-affirming care at UChicago Medicine, the family isn’t sure where to go next, said the child’s mother, who asked to remain anonymous to protect her child’s privacy and family’s safety, given the charged nature of the issue.
Her child started using him/he pronouns in third grade, and started getting puberty blocker shots around age 11, she said. When Trump took office, the family worried he might lose access to those shots, so his doctor at UChicago Medicine implanted a device that would slowly release medication to block puberty. With the implant, he’s supposed to have his bone density, hormone and vitamin D levels checked every few months, his mother said.
All that monitoring stopped when UChicago Medicine shut down its program, his mother said. She’s now trying to figure out where her child should get monitored next, and where he may eventually be able to receive hormone therapy.
For now, she’s watching her child for physical changes, hoping the implant is still working and that he’ll be OK without monitoring for a time.
“They basically stopped without any kind of plan,” his mother said. “It’s basically an abandonment of these kids.”
Forging ahead with care
Stories like the South Side family’s are part of the reason a small group of mostly independent doctors say they’re continuing to offer care despite threats from the government.
In recent months, those threats have intensified. In July, the Federal Trade Commission issued a request for public comment on gender-affirming care for minors, seeking information on whether medical professionals may have violated the law “by failing to disclose material risks associated with ‘gender-affirming care’ or making false or unsubstantiated claims about the benefits or effectiveness of ‘gender-affirming care.’”
That same month, the U.S. Department of Justice said that it had sent more than 20 subpoenas to doctors and clinics involved in “performing transgender medical procedures on children.”
“Medical professionals and organizations that mutilated children in the service of a warped ideology will be held accountable by this Department of Justice,” said U.S. Attorney General Pamela Bondi in a news release at the time.
Dr. Jessica Lapinski, however, believes it’s important to continue providing gender-affirming care to kids despite the federal government’s actions.
“Working with the community, you see that these are families and kids that just want to live a normal life,” said Lapinski, a family medicine doctor who practices in Bloomingdale. “No one chooses to go down this route. It’s not an easy route to go down.”
Unlike hospitals, which rely heavily on Medicare and Medicaid funding, Lapinski does not accept any federal money and does not bill health insurance for her services. Instead, she has a membership model, in which she charges patients a flat fee — $150 a month for gender-affirming care for minors. She offers patients medication to delay puberty as well as hormone therapy. She does not do surgeries.
Many of the roughly two dozen practices still providing gender-affirming care in the Chicago area operate on a similar membership model and don’t accept federal dollars, McMaher said. Though health insurance often will pay for gender-affirming care for kids, Lapinski doesn’t accept insurance for her services because she believes she can provide better care to patients without the involvement of insurance companies, though she said she will submit bills to insurance for medications and labs if patients want her to do so. She also worries that eventually insurance companies may stop covering gender-affirming care for minors, under pressure from the federal government.
At first, Lapinski said, she tried to stay quiet about her services, out of safety concerns. But when she heard that some transgender children died by suicide, she decided to speak out.
“At the end of the day when I go home, do I feel like I’m doing the right thing for patients? … I do,” Lapinski said. “I really know we’re saving lives.”
A number of studies in recent years have shown improved mental health for transgender and gender diverse youth who receive gender-affirming care. The American Academy of Pediatrics also supports access to gender-affirming care for minors.
In contrast, the United Kingdom banned the use of puberty blockers to treat gender dysphoria in people younger than 18 last year after one of the country’s top pediatricians released a report finding that evidence in favor of puberty blockers for adolescents was weak, and more research was needed.
Lapinski and other doctors say they don’t take gender-affirming care for minors lightly.
Kids and teens are typically only allowed to start gender-affirming care after physicals, blood tests and psychological evaluations, Lapinski said. For example, therapists must first determine that a teen is suffering from gender dysphoria, not body dysmorphia, Lapinski said. Gender dysphoria is when people experience distress because their gender identity differs from their sex at birth or physical characteristics, while body dysmorphia is a preoccupation with a perceived flaw in one’s appearance that may actually be unnoticeable to others.
Trump’s executive order said, “Medical professionals are maiming and sterilizing a growing number of impressionable children under the radical and false claim that adults can change a child’s sex through a series of irreversible medical interventions.”
Lapinski, however, said the effects of puberty blockers are largely reversible, though she does tell patients that their future fertility might be affected. If a child stops taking the blockers, they generally resume puberty normally, she said.
“What it’s giving us is time so the kid or teen or adult is going to be old enough to start hormones, or if they decide this is not for me, then we can stop it,” Lapinski said.
When it comes to hormone therapy, some changes are reversible, others are irreversible and the permanence of other changes varies by individual.
For example, when teens are given masculinizing hormones, increases in muscle mass and oiliness of the skin are reversible if a person stops taking the hormones, Lapinski said. Other changes are irreversible, such as a deepening of the voice and the growth of facial hair, she said.
With feminizing hormones, breast growth is irreversible, while changes related to sexual health may or may not be reversible, varying from patient to patient, Lapinski said.
But there’s another side to the argument about gender-affirming care and irreversible changes, she said. If teens are forced to wait until the age of 19 to start gender-affirming care, they will have already gone through puberty and experienced other permanent — and potentially damaging — effects, she said.
“If you are a trans female and you now have an Adam’s apple, you have broad shoulders, you’re never going to be able to pass completely in your gender,” Lapinski said. “There’s psychological harm in these individuals because they’re having to go through the wrong puberty and then having to deal with the societal pressures of then being outed.”
The South Side mom of the 13-year-old said people may not understand the harm in waiting until the age of 19 to start gender-affirming care. But it’s something she understands as the parent of a nonbinary child.
“There’s a lot of misunderstanding about what this care is,” the mother said. “People think the kid will be fine, they can just go for therapy, but that’s not actually true.”
Parents may not understand the need for gender-affirming care until they see their children looking at themselves in the mirror with “hatred and disgust and dismay,” she said.
“This is an area where kids really need scaffolding and support from the medical community and the broader community, and it’s really awful to me that that’s being completely jettisoned,” the mother said.
Fighting back
The interrupted care has caused an uptick in youth and families in distress, said Lindsay Doyle, a clinical psychologist and clinical director at the Chicago Therapy Collective, which specializes in working with the transgender community.
It’s also led to anguish for some medical providers who’ve been told to halt gender-affirming care, Doyle said. CTC is in the process of forming a support group for providers of gender-affirming care, including nurses, doctors and therapists, she said.
“There’s a lot of moral injury they’re experiencing in having to navigate at this time in not being able to provide care to their existing patients,” Doyle said. “You are being asked essentially to kind of go against your commitments as a healing professional, to discontinue care when you know that’s going to be harmful.”
McMaher, with Trans Up Front Illinois, would like to see Illinois leaders do more to keep gender-affirming care for minors available.
Illinois, along with 16 other states, sued Trump, Bondi and the Department of Justice in August, challenging their efforts to restrict care for transgender and nonbinary youth. Gov. JB Pritzker also recently announced the creation of a legal hotline, for people who have questions about the legal rights of LGBTQ+ people in Illinois. Last month, Illinois joined 18 other states in filing a brief in federal court opposing the Trump administration’s efforts to subpoena documents, including patient records, related to gender-affirming care at Boston Children’s Hospital.
Illinois Attorney General Kwame Raoul said in a statement that the Department of Justice is “attempting to bully health care providers to stop providing the care their patients require.”
But McMaher would like to also see state money allocated to help kids who need gender-affirming care given that many of the remaining options are self-pay. McMaher would also like to see state leaders talk directly to more families who find themselves in limbo.
“You can’t just stand up at a podium and say, ‘I’m an ally,’” McMaher said. “We need them to show up where they’re needed.”
One northwest suburban mother of a 15-year-old child who is transgender wishes Chicago-area hospitals had done more to stand up for gender-affirming care before bowing to threats from the federal government. She said her son is still receiving gender-affirming care through a private doctor, but she worries about others who aren’t as lucky.
“I wish I saw them fighting back more,” said the mother, who asked to remain anonymous to protect her family’s privacy, of the larger hospital systems. “They weren’t really willing to put up a fight to see what would happen.”
On the other hand, Skrezyna, whose daughter continues to receive gender-affirming care at Lurie, said he understands, in a way, why hospitals are backing off gender-affirming care for kids. He understands that the kids make up a sliver of the many patients that hospitals serve, and that hospitals rely on federal funding to care for that much larger group of patients.
“But when that sliver of a sliver is your own kid, everything feels so much more raw and personal,” Skrezyna said. He thinks it’s wrong that hospitals now have to pick and choose who to help.
His daughter Chloe said she fears not only for herself but for all the other kids who could lose care. Without that care, they might not get to live “as authentic versions of themselves,” she said.
Celeste Addyman’s child, who is transgender, is still a few years away from puberty — but Addyman is already concerned about whether her child will be able to receive gender-affirming care.
Addyman promised her child, before Trump took office, that she wouldn’t force her to go through male puberty, that she wouldn’t have to face the prospect of growing a mustache or having her voice deepen.
“She has been so clear about who she is ever since she was a really small child, “ Addyman said.
Addyman had always planned to seek puberty blockers for her daughter when the time was right, but now she doesn’t know if they’ll be available.
“I just know it would be devastating to her to not be able to access that treatment when she needs it,” Addyman said.
