Stat News is reporting that a group of ALS patients are planning to protest outside of the FDA this week in hopes of replicating the protests of AIDS activists in the ’80s who were upset at the lack of attention and pace of the search for treatment.
Why this matters: Patients were hoping to see more results following the $115 million USD raised by the ALS ice bucket challenge. They also advocated for the “right to try” legislation passed last year and there is also growing frustration about the news that other breakthroughs and new therapies are happening for other diseases
Notable quotes: “These people are desperate, I can see that. I see them every day, it’s a horrible disease,” Jonathan Glass, the director of Emory University’s ALS Center