STEVE INSKEEP, HOST:
This week, the Trump administration went beyond the evidence, according to scientists and doctors, not just in linking Tylenol to autism, but also insisting that another drug might treat it. NPR's Yuki Noguchi reports on how families are responding.
YUKI NOGUCHI, BYLINE: Caitee Donovan's daughter, Scarlett, was 17 months old when she was diagnosed with autism.
CAITEE DONOVAN: We were told she would never speak. A direct quote from the doctor, we'd be lucky if she sat and banged her head against the wall. That was what we were told.
NOGUCHI: Now, nine years later?
DONOVAN: She plays flag football. She did cheer for four years. She talks nonstop.
NOGUCHI: Donovan says it wasn't any drug, but years of therapies for speech, movement, behavior and even eating that helped. Donovan now understands autism is complex with mostly genetic origins. But for years, she agonized whether something she did or didn't do might've caused the condition.
DONOVAN: You go through this self-blame, and you beat yourself up and you ask yourself 1 million questions. And I've been in therapy for many years and worked on this a lot to come to the conclusion that it isn't something I did. This is just who my daughter is, and she's perfect the way she is. And this is not my fault.
NOGUCHI: So she was dismayed hearing President Trump and his deputies talk about autism. In particular, Health and Human Services Secretary Robert F. Kennedy Jr. said this when announcing the Food and Drug Administration greenlit broader use of leucovorin.
(SOUNDBITE OF ARCHIVED RECORDING)
ROBERT F KENNEDY JR: Our research has revealed that folate deficiency in a child's brain can lead to autism. We have also identified an exciting therapy that may benefit large numbers of children who suffer from autism.
NOGUCHI: Scientists question both statements. Leucovorin is a chemotherapy drug that treats folate or vitamin B deficiencies. Studies of its use on those with autism are very limited. Anyway, Donovan says, suggesting autism has simple causes or solutions is wrong. She worries it will confuse and frighten other families.
DONOVAN: On one hand telling me that a medication caused it, and then on the other hand telling me that a medication could fix it, I think I'd be scared.
NOGUCHI: Alycia Halladay shares those concerns. Halladay is a doctor, parent of a daughter with autism and chief scientific officer of the Autism Science Foundation. She says the administration is bypassing normal research and safety checks with leucovorin, pinning its faith on a small study showing the drug may alleviate some symptoms for a subset of autistic patients with cerebral folate deficiency.
ALYCIA HALLADAY: The study was very small. It didn't have any safety data. They are jumping the gun a little bit. But I don't think most people really understand the rigor that the FDA normally would apply.
NOGUCHI: She's also critical of statements by Mehmet Oz, head of the Centers for Medicare and Medicaid Services.
(SOUNDBITE OF ARCHIVED RECORDING)
MEHMET OZ: State Medicaid programs in partnership with CMS will cover prescription leucovorin around the country. It's yours, but you'll have to go to a doctor to get a prescription.
NOGUCHI: Halladay says, in fact, the White House is allowing leucovorin only for that subset of autistic patients with a vitamin B deficiency.
HALLADAY: It was disingenuous to tell people at the press conference that it was going to be made available to everybody. I think families should know that, in fact, it's not going to be approved or made available to the wide autism community. It's only going to be made available to those with a documented cerebral folate deficiency.
NOGUCHI: Nevertheless, she says many families are excited.
HALLADAY: People have been asking their doctors for this, and their doctors have been telling them there's not enough safety data, there's not enough effectiveness data.
NOGUCHI: Halladay says the administration is essentially testing leucovorin in the real world. The administration says it will collect data to see what happens, quote, "over the next few months."
Yuki Noguchi, NPR News.
(SOUNDBITE OF WOES' "GUILTY GHOSTS") Transcript provided by NPR, Copyright NPR.
NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.
