In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.
For several years, parents of autistic children have paid between $10,000 and $15,000 to have their children undergo unproven stem cell and cord blood treatments at Duke University, through what’s called an expanded access program, or EAP. That practice has attracted criticism from observers and ethicists in the stem cell field, who have asked why Duke was charging money for a service when its own clinical trials have not been very promising. In recent months, Duke has sent letters informing parents that this program is no longer available to autistic children—raising new questions about what those parents, who’d been led to believe the treatment might be a panacea for their kids, will do instead.
One of the more urgent questions is whether parents who can’t access the treatment though Duke will instead go to a for-profit partner with ties to the school. That would be Cryo-Cell International, which previously announced that it had entered into a licensing agreement with Duke allowing it to offer the same stem cell infusions in private, for-profit clinics the company has said it plans to begin opening this year. (Duke previously told Motherboard that “the licensing agreement does not grant Cryo-Cell the use of Duke’s EAP for the treatment of patients at Cryo-Cell, but will allow Cryo-Cell to develop its own cell therapy program.”)
