It's not unusual for desperate patients to bombard a biotech company with requests for one of their experimental medications. But in the case of Neuraltus Pharmaceuticals, a small group of ALS patients have gone to the extreme: Making their own "home brew" versions to see if it can help keep them alive.
"We simply don't have time to wait for the results of [clinical trials]. Our life spans are much shorter than the [Food and Drug Administration] approval process," ALS patient Ben Harris tells The Wall Street Journal.
In this case the object of their desperation is NP001, an experimental drug now in a Phase II study. Investigators theorize that by damping down inflammation in the central nervous system they can slow down the progression of Lou Gehrig's disease. And faced with years of study in the clinic, a group of individuals has been tracking down patents and any other information they can get to design their own version for a home study. They are using a concoction of sodium chlorite, used in municipal water treatment facilities, which they believe is the active ingredient.
Emory University's Jonathan D. Glass, an investigator in the study, says what they are doing is reckless and dangerous. "I feel their pain that they really want it to happen faster, but I don't think you can do it without the medical establishment," he tells the Journal.
- here's the article from The Wall Street Journal