Some terminally ill patients are turning research and development into a DIY enterprise, frustrated at the pace of getting potentially life-saving treatments through the US Food and Drug Administration (FDA), reports The Wall Street Journal.
"We simply don't have time to wait for the results of [clinical trials]," said Ben Harris, who suffers from Lou Gehrig's Disease (ALS), to the Journal. "Our life spans are much shorter than the [Food and Drug Administration] approval process."
Patients suffering from ALS, like Mr. Harris, are increasingly turning to home-brewed drugs to treat their condition, says the Journal, and they're getting information on how to do it from some unlikely sources: other clinical trials participants and patent filings.
Patients have taken to tracking down research papers, obtaining chemicals, researching patent filings, and obtaining outside consultants to engineer their own medications.
"Fueled by the desperation that comes with having a fatal illness, ALS patients have used the Internet to swap information with others who are in the trial for NP001, a compound made by Neuraltus Pharmaceuticals Inc., a small biotech in Palo Alto, Calif," reports the Journal. "They also tracked down the company's public filings, such as patents, and read scientific papers published by the researchers and doctors involved with the testing. NP001 is designed to treat inflammation of the central nervous system and hopefully slow down the progression of the disease."
All of this has some experts concerned, including Jonathan Glass of the Emory University School of Medicine's ALS Center. "These people could hurt themselves," explains Glass. "Who knows what they are actually making in their kitchen."
"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," added Glass, who noted working with regulatory officials to speed up the process would have added benefits to other patients.
Wall Street Journal - Frustrated ALS Patients Concoct Their Own Drug