‘Betrayed’: Families are dealing with dashed hopes after pivot on autism treatment | CNN

The drug leucovorin was touted by the Trump administration in September as a potential treatment for thousands of children with autism. Now, some parents and guardians of children with autism say they feel abandoned by the US Food and Drug Administration’s new stance on leucovorin. “I bet some probably feel betrayed. I kind of do,” said Keith Joyce, 60, who is the guardian of a 5-year-old with autism who takes the drug. “I kind of felt vindicated with what I was doing. But now they’re saying, ‘Oh, nope, we’re out, and we were wrong.’ ” Instead expanding access to leucovorin for “hundreds of thousands” of children with autism, the FDA on Tuesday made a narrower approval of the drug for people with a rare genetic disease. Fewer than 50 cases of the condition — cerebral folate deficiency in the folate receptor 1 gene — have been identified worldwide. Senior FDA officials said this week that there isn’t “sufficient data” that leucovorin is a potential treatment for autism. “It’ll be up to patients to talk with their physicians to just see if [leucovorin] might be right for them,” one senior official said. “We don’t have the evidence now for a b