Families respond to Trump administration’s autism claims : NPR

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This week, the Trump administration has exceeded evidence, according to scientists and doctors, not only to link tylenol to autism, but also by insisting that another medication could treat it. Yuki Noguchi of NPR reports how families react.

Yuki Noguchi, Byline: Caitee Donovan’s daughter, Scarlett, was 17 months old when she was diagnosed with autism.

Caitee Donovan: We were told that she would never speak. A direct quote from the doctor, we would be lucky if she sat down and bang her head against the wall. This is what we were told.

Noguchi: Nine years later?

Donovan: She plays Football Flag. She encouraged four years. She speaks constantly.

Noguchi: Donovan says it was not medication, but years of therapies for speech, movement, behavior and even the consumption that helped. Donovan now understands that autism is complex with mainly genetic origins. But for years, she has agonized if something she has done or not may have caused the condition.

Donovan: You go through this self-cream, and you are fighting and you ask yourself 1 million questions. And I have been in therapy for many years and I have worked a lot on it to conclude that it is not something that I did. It’s just who is my daughter, and she is perfect as she is. And it is not my fault.

Noguchi: She was therefore dismayed when he heard President Trump and his deputies speak of autism. In particular, the Secretary of Health and Social Services, Robert F. Kennedy Jr.

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Robert F Kennedy JR: Our research has revealed that folate deficiency in a child’s brain can lead to autism. We have also identified fascinating therapy that can benefit many children suffering from autism.

Noguchi: Scientists question the two statements. Leucuvorine is a chemotherapy medication that treats deficiencies in folate or vitamin B. Studies of its use on autistic people are very limited. Anyway, says Donovan, suggest that autism has causes or simple solutions is wrong. She is worried, that confuses and will scare other families.

Donovan: On the one hand, telling me that a medication caused it, then tell me that a medication could fix it, I think I would be afraid.

Noguchi: Alycia Halladay shares these concerns. Halladay is a doctor, parent of an autistic girl and scientific director of the Autism Sciences Foundation. She says that the administration bypassing normal research and safety verifications with leucuvorine, pinning her faith with a small study showing that the drug can reduce certain symptoms for a subset of autistic patients with a Foarbral Foarbral deficiency.

Alycia Halladay: The study was very small. He had no security data. They jump the pistol a little. But I don’t think most people really understand the rigor that the FDA would normally apply.

Noguchi: She also criticizes the statements of Mehmet Oz, responsible for centers for Medicare and Medicaid Services.

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Mehmet Oz: Medicaid state programs in partnership with CMS will cover leucovorin of prescription across the country. It’s up to you, but you will have to go to a doctor to get a prescription.

Noguchi: Halladay says, in fact, the White House authorizes Leucovorine only for this subset of autistic patients with vitamin B deficiency.

Halladay: It was fallacious to tell the people of the press conference that he was going to be made available to everyone. I think families should know that in fact, it will not be approved or made available to the large autism community. It will not be made available to those who have a documented cerebral folate deficiency.

Noguchi: Nevertheless, she says that many families are excited.

Halladay: People asked their doctors, and their doctors told them that there is not enough security data, there is not enough efficiency data.

Noguchi: Halladay says that the administration essentially tests leucuvorine in the real world. The administration says that it will collect data to see what is going on, quote “in the coming months”.

Yuki Noguchi, NPR News.

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