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The Trump administration finalized a new health care policy that has been in the works for months: No federal dollars can be used to pay for gender-affirming care for children covered by Medicaid or the Children's Health Insurance Plan.

"Every time you wake up, it feels like — what's going to happen next?" says the mother who asked NPR to identify her by her initials, A.W. "What else are they going to take away from us and our kids, to keep them thriving?"

A.W., who is the parent of a transgender teenager, asked not to use her full name because she fears her family could be targeted or her children could be taken away by the federal administration.

 the administration finalized on Tuesday is quite small. Health research organization KFF 

 there are 130,000 transgender people under age 18 who live in states where gender-affirming care is still available — many states have banned the care after a 

A.W.'s family is in that small group. After her husband's company went out of business, they lost their health benefits, and are now enrolled in Medicaid. They also rely on food assistance, and A.W. says those cuts have been hard on them too.

A longtime Republican herself, A.W. says she never would have believed her family would need this help. "But we do need it," she says. "We need it really badly right now because my husband is still unemployed."

She says she knew the rule restricting access to transgender care through Medicaid was coming, since it was 

. Still, when it was published, she felt panicked. "The initial just — what are we going to do?"

, director of the Center for Health Policy and the Law at Georgetown. "I'm not aware of any other times that the federal government has prohibited federal funds in this way for a specific patient population with a particular diagnosis," she says. She calls it "unprecedented" and "untested."

Youth enrolled in Medicaid or CHIP could still receive care if the states they live in decide to backfill the money the federal government will be withholding. Exactly how states will respond is unclear, says 

, director of LGBTQ Health Policy at the nonpartisan health research organization KFF. "We'll have a better understanding of who will be impacted by this when we understand which states are going to continue to offer these services," she says.

 about the final rule, Dr. Mehmet Oz, the administrator of the Centers for Medicare and Medicaid Services (CMS), explained the agency's reasoning. "When the harms of sex-rejecting procedures are so serious and the evidence is weak, the government cannot keep signing these checks," he said.

CMS did not make Oz available for an interview or answer NPR's questions about the rule.

Days after the rule was published, the Trump administration 

 called "Wolves in White Coats," which features the stories of young people who have de-transitioned, meaning they once identified as transgender but don't anymore. The report accuses doctors and hospitals of being driven by greed and of using fraudulent billing practices.

None of the named authors and contributors to the report are government employees, and many have ties to anti-trans advocacy work. CMS did not answer NPR's questions about the role HHS played in developing the report.

Trump administration officials cited that report when 

 dozens of health care providers to the inspector general for the Department of Health and Human Services and the Justice Department alleging potentially fraudulent billing practices.

, also called "Wolves in White Coats," narrated by HHS Assistant Secretary for Health Dr. Brian Christine.

"I think we have to see the administration actions operating on two levels," says Dawson. "One is formal policymaking like we see with the Medicaid final rule, and the other is this whole suite of actions — the language being used and the social media posts — to stoke fear in the [health care] provider community."

She says that fear has been effective in getting hospitals to end their gender programs. "When providers have rolled back care, every time I've seen a public statement, those provider groups have explicitly said that they're rolling back care, not because there's been a change in what's recommended in terms of care delivery or in best practices, but instead as a result of administration policymaking and fear," she says.

For her part, A.W. says the Trump administration is spending way too much time thinking about families like hers and the decisions they make. "The obsession is so weird to me," she says.

A.W. says she and her husband didn't have any education about trans identity when her youngest started giving them "clues" from the age of three or four years old. "We thought, 'Oh, he's a tomboy,'" she says. Then he started at a new school and other students assumed he was a boy. The teacher told them he wasn't correcting anyone.

"We were like, 'Oh, that's interesting,'" she says. "So that's when we started really having serious talks with him about what he was feeling."

She remembers the first time she took him to the boy's section at Nordstrom's when he was about seven years old. "I've never seen a kid so excited in my whole life," she says. "The sales associate calling him 'little buddy' — it was so apparent to me who he was."

For many years, he worked with a therapist, and then eventually they went to a gender clinic. "These doctors are so knowledgeable and so experienced and so thoughtful about their care," she says. "No decision is flippant. There is a lot of thought and a lot of time that goes into every health care decision. Nothing is being pushed." She says Medi-Cal, California's Medicaid program, has been "amazing," and has covered everything they've needed.

She says the narrative advanced by the Trump administration — that families are being tricked into gender-affirming care by doctors and hospitals driven by greed — is completely off base.

"This whole notion that it's woke Democrats that are turning our kids into being trans is idiotic," she says. So is the argument that doctors are driven by profit. "It's kind of laughable because the population is so small," she says. "So why? Why? Why are they doing this?"

She thinks one reason is to score political points, noting that all of this activity is happening in August, when Congress is out of session and there's not much news in Washington.

President Trump made the politics of the Medicaid rule explicit in a post 

 on Tuesday. He wrote that the rule was being issued at his direction. "Please remember this when you are casting your vote in the Midterm Elections in November," he posted.

"It's heartbreaking and devastating to have your child used as basically a political football," A.W. says. "At the beginning of all of this, I was terrified. And now I'm just really f***ing angry."

The new rule is likely to be challenged in court, says 

, an LGBTQ+ legal advocacy organization. "This has to be seen in the broader context of this long, ongoing attack on the transgender community," she says, mentioning the 

So far, Levi says, the Trump administration has had some key losses on this issue in court, and she senses that the Justice Department is stretched thin.

"I am involved probably in nine or ten cases against the administration and they have the same two to four lawyers regularly showing up in court, and they're oftentimes trying to get delays in filings," she says.

That may be why in addition to making policy this week, the administration is also making videos. "The documentary probably turns out to be a more effective tool for them than anything else, because you don't have to legally defend a documentary," she says.

Many Democratic-led states have vowed to 

. Some have also announced plans to backfill the federal funding for these patients, but that could be difficult, says Keith at Georgetown. "I think it's going to mean a lot of disruption for states who have to scramble to find money to do this when they didn't have to before," she says.

 to keep gender-affirming care available for families like hers after the rule takes effect. She's hoping that means there won't be interruptions. But even though she's not worried about access to care in the short term, there are other things to worry about as the parent of a trans teenager.

"If we send our son to travel to visit family across the country, we have to consider where his layover is," she says. "If he's going to be in a state where it restricts his access to bathrooms, we can't fly him through that state." On roadtrips, they have to worry about where they make stops. "Can we go to Europe? Will we be able to come back into the country?" she wonders.

"It's not normal to live like this," she says. "These are just kids who want to thrive."

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A longtime Republican living in California says the Trump administration's continuing actions to target transgender youth take a personal toll.

‘What are we going to do?’ The mom of a trans teen grapples with Trump’s Medicaid move

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