"On September 22, the Food and Drug Administration announced it was approving a new use of a drug called leucovorin calcium tablets as a treatment for cerebral folate deficiency, which the administration also presented as a promising treatment for the symptoms of autism. In the days and hours after the announcement, tens of thousands of parents of autistic children joined a Facebook group, first set up in May, to share information about the drug."
"One angry parent shared an email from their health care provider refusing to prescribe leucovorin, even after the FDA announcement. "Get a different doctor," a group member responded. Another parent shared a spreadsheet filled with the names of doctors who they claimed would prescribe the drug. Two individuals who claimed to be nurses argued over whether leucovorin should be prescribed at all. Many others shared links to unproven alternatives, including folinic acid supplements that can be ordered online."
"Some offered advice on what dosage to give as the FDA has yet to provide such information. Others pushed conspiracy theories, blaming "big pharma" for covering up the effectiveness of leucovorin for years, or blaming vaccines for causing autism. One person suggested prayer as a way to treat autism: "You may think this is crazy....get him in church. Get him listening to Christian music. Even just Christian kid songs. Children like him are so innocent....they can feel Gods presence and the comfort of the Holy Spirit.""
On September 22 the Food and Drug Administration approved leucovorin calcium tablets for cerebral folate deficiency and presented it as a promising treatment for autism symptoms. Tens of thousands of parents of autistic children joined a Facebook group to share information. The group was overwhelmed by chaos, confusion, and conspiracy theories. Parents, pediatricians, nurses, affiliate marketers, and supplement companies posted conflicting advice, referrals, and links to unproven alternatives. Some members shared doctors' names and spreadsheets of prescribers while others debated dosages in the absence of FDA guidance. Several posts promoted prayer and blamed big pharma or vaccines.
Read at WIRED
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