For families of transgender youth, new federal rules could mean changes to how their children access gender-affirming medical care.
The Centers for Medicare and Medicaid Services issued a final rule in early August ending federal Medicaid and CHIP funding for certain gender-affirming treatments for minors. If the rule goes through, it would take effect October 13th. Young people already receiving services like hormone therapy would receive a transition period of up to six months.
For two Pennsylvania parents of transgender teens, the changes are already creating uncertainty about where their children will get care, and how their families will pay for it. One parent, who asked to remain anonymous for the safety of their family, said her family relies on Medicaid, and finding a provider was already difficult.
“Ever since Trump’s executive order, many providers have changed their policies where they are no longer offering care for minors… So it’s been a battle finding just a provider to begin with. And now finding out Medicaid is basically going to say, ‘Guess what? Here’s an extra wrench in your little plan.’”
That parent says her child’s current provider is closing their private practice, leaving the family searching for another doctor who will treat a minor, accept Medicaid, and continue providing gender-affirming care. And she says other parents around her are facing similar questions.
“The biggest one is basically, ‘Where the f do we go?’ And then it’s a matter of ‘how the heck do we afford it?’”
For another Pennsylvania parent, who also asked to remain anonymous due to safety concerns, access to care has been more consistent. Her child started receiving puberty blockers around age 12 and later began testosterone to transition from female to male.
But now, she’s making contingency plans.
“I felt like I was thrown overboard a couple weeks ago. The dates got stronger and the reality started setting in.”
She says she’s concerned about losing access to medical care and having to pay for medication out of pocket. That could be doable, but the family’s enrollment in CHIP has helped significantly in making her child’s care affordable. Families who have savings may get by, but she worries for those who don’t have savings or resources.
“For anybody who does not [have savings] or doesn’t have access to doctors that are gonna try to help them navigate through this, they are kind of on a hill by themselves. My heart breaks for these kids.”
The first parent, meanwhile, says her family is caught in a financial gap created by relying on Medicaid.
“I’m a full-time employed individual. I pay my taxes, I’m doing what I can in society. But we’re stuck in a spot where we don’t make enough. So we have to be on Medicaid. We don’t have another choice.”
Both parents say the uncertainty goes far beyond the question of paying for medication. Their children’s mental health visibly improved after transitioning and beginning hormone therapy. They worry that losing access to that could reverse that progress.
“I feel like you’re taking a population that’s already very, very fragile, and now you’re pulling away, for some of them, the one thing that really validates who they are and gives them the confidence they need to walk through the schools, to walk through the hallways, to be who they are.”
The federal government argues the new rule is intended to protect children and says the treatments covered by the rule lack evidence of clinical benefit. CMS also says the rule does not affect mental health services.
For those Pennsylvania families, though, the immediate concern is more practical: finding a provider, keeping their children on prescribed medication, and figuring out how to pay for it. The uncertainty around that is taking an emotional toll.
“For me, it’s fear. It’s like, ‘What’s next?’ What am I gonna have to fight next?”
The first parent says her fear has turned into anger.
“It’s a sense of anger, of this isn’t fair. This isn’t right. This is their own private lives, it should not be up for executive order debate.”
A conversation that’s a simple policy debate for many is no longer abstract for these parents. It’s about whether their children will be able to continue receiving the care they’ve already been receiving, and what families will have to do if that care becomes harder to find.
