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Sunday, June 4, 2017

Hyping Suramin

In The Politics of Autism, I discuss various ideas about what causes the condition.  I also write:  "If the science were not confusing enough, its coverage in the mass media has added another layer of murk.  News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. "  

Marijuana and stem-cell therapy are just two examples.

Emily Willingham writes at Forbes:
In the small clinical trial that is generating the huge buzz, 10 autistic boys were randomized to receive either one intravenous infusion of suramin or a placebo infusion. The boys, ages 5 to 14 years, were matched by age, IQ, and autism intensity. The study was published in the Annals of Clinical and Translational Neurology.

Following the treatments, Robert Naviaux at the University of California, San Diego, and his team monitored suramin blood levels and autism-related traits for six weeks. At one week after the infusion, scores on a battery of autism tests had improved for the five boys in the treatment group but not the five boys in the placebo group. A few weeks later, those improvements faded.
In addition, this study was supposed to be blinded so that no one knew who was getting the suramin infused, but the rash was likely a dead giveaway about which children got the drug. The study authors note that "Five children who received suramin developed a self-limited, evanescent, asymptomatic, fine macular, patchy, morbilliform rash over 1–20% of their body."
The risk of influence from such hints and high expectations is a real one. One parent in the study is quoted in the UC San Diego press release as seeing improvement within one hour of infusion of the drug, saying that their son began to make more eye contact with the clinicians in the room just following the treatment. In the same release, researchers describe children who said their first words in a decade within a week of receiving the drug.
From the press release:
Suramin is not approved for the treatment of autism. Like many intravenous drugs, when administered improperly by untrained personnel, at the wrong dose and schedule, without careful measurement of drug levels and monitoring for toxicity, suramin can cause harm. Careful clinical trials will be needed over several years at several sites to learn how to use low-dose suramin safely in autism, and to identify drug-drug interactions and rare side effects that cannot currently be predicted. We strongly caution against the unauthorized use of suramin.