DON’T WATCH this whole video. Please.
ALS (AKA Lou Gehrig’s disease) is a merciless disease. Desperate patients and their families have turned to social media in their quest to find a cure, as the only drug currently approved for ALS in the U.S. prolongs life only a few months.
Late last year, Genervon, a small California biotech company with a questionable past, launched a PR campaign touting the benefits of its experimental ALS drug. It claimed in an early-stage trial with 12 patients, that the results of GM604 were dramatic, and pushed despairing families to demand accelerated approval from the FDA. But…
… despite the claim, no data has been released that shows evidence the drug works. It does not appear that the company has even filed for the accelerated approval, which would bypass a Phase III randomized trial – the phase that shows the drug’s actual efficacy and takes years to complete.
However, in the meantime, a massive patient-driven social media campaign appealing for approval and demanding access to treatment ensues. Over half a million people have signed the petition on change.org.
We have all seen that tapping into the power of social media in disease awareness can be monumental (evidenced in ALS’s ice bucket challenge). But this is a biotech company with an experimental drug and unanswered questions. Really?
Potentially sad thing is, this social “campaign” worked. Genervon seeded the idea and the patients’ families did the rest. With power and access comes responsibility. What a way to misuse the power of people’s collective voices.