Fed up with Washington, ALS advocates consider ACT UP’s take-no-prisoners approach
WASHINGTON — Next Wednesday, a cadre of ALS patients will gather for a protest outside the FDA’s headquarters in suburban Maryland with a clear message: “No More Excuses.”
The rally is being organized by a ragtag group of ALS patients who connected mostly through Facebook, and it’s far less a production than other efforts like the 2014 ice bucket challenge that swept around the world.
These protesters haven’t even established a formal organization or a website; some said they’ve never even been to a protest. There’s nary a poster board in sight, yet.
But the band of patients is already catching the attention of regulators at the Food and Drug Administration, establishment advocates at the ALS Association, and top bioethicists around the country. Top Senate lawmakers, too, are beginning to advocate for their cause.
These protesters say, at least, that they plan to emulate the aggressive, even “radical” approaches and the take-no-prisoners strategy of the AIDS activists who protested the FDA’s slow work on that disease in the 1980s. Like the ACT UP activists before them, the ALS patients are coming armed with a list of
