Do-It-Yourself Medicine

Patients are sidestepping clinical research and using themselves as guinea pigs to test new treatments for fatal diseases. Will they hurt themselves, or science?

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© KAMRUZZAMAN RATAN/ISTOCKPHOTO.COMOn August 10, 2011, Joan Valor Butler diluted a solution of 5 percent sodium chlorite in 1 gallon of slightly salted water, and slowly injected 1 liter of the mixture into her 42-year-old son’s feeding tube, at his request. Sodium chlorite is a chemical commonly used in low concentrations in camping water-purification kits and for municipal water treatment. Many also believed it to be the active ingredient of a promising drug in clinical trials for amyotrophic lateral sclerosis (ALS)—a disease Eric Valor has lived with for the better part of the past decade.

As the disease gradually paralyzed his entire body, Valor became an avid student of ALS, a degenerative disorder commonly known as Lou Gehrig’s disease and characterized by a deterioration of motor neurons. He had first learned about the intravenous drug, called NP001, in 2010, when its developer, Neuraltus Pharmaceuticals, announced it would soon be starting a Phase 1 trial and was recruiting ALS patients. Animal toxicology tests had demonstrated the drug’s safety, and a small study in an ALS mouse model suggested it may slow disease progression—most likely by reducing macrophage-initiated killing of neurons, a recently proposed mechanism for how ALS wreaks havoc on the body. Valor started a thread on an online ALS patient forum to discuss NP001, and several patients decided to inquire ...

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Meet the Author

  • Jef Akst

    Jef Akst was managing editor of The Scientist, where she started as an intern in 2009 after receiving a master’s degree from Indiana University in April 2009 studying the mating behavior of seahorses.

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