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FDA Moves to List Leucovorin for Cerebral Folate Deficiency After White House Autism Promotion

Specialists warn the evidence remains limited, urging large, controlled trials before broader prescribing.

Overview

  • The FDA has begun updating leucovorin’s label to note it can improve certain symptoms in adults and children with cerebral folate deficiency, according to a Federal Register notice.
  • The action applies to a subset of autistic people with low cerebrospinal-fluid folate rather than all autistic individuals, with estimates of eligibility ranging from about 7% to 30% depending on measurement.
  • President Trump and FDA commissioner Martin Makary highlighted the move at the White House, prompting objections from leading researchers and self-advocates who criticized overstated claims and stigmatizing rhetoric.
  • Clinicians report increased off-label prescribing and interest from compounding pharmacies even as experts note uncertain dosing guidance, unclear duration of use, and limited pediatric safety data.
  • The NIH plans to monitor outcomes and explore broader effects, and observers expect the label change to encourage insurer coverage while scientists call for larger, rigorous trials to test efficacy.