This photo provided by ALS patient Brian Wallach shows him and his wife, Sandra Abrevaya, at their home in Chicago on May 2021. Wallach, who formed I AM ALS with Abrevaya after being diagnosed with ALS in 2017, spent years working on legislation with congressional staffers, researchers and patients which passed the House last December in a landslide 423-3 vote.
The initiative blurs the line between treatment and research, and it puts the NIH in the position of paying for unapproved drugs in studies that may yield limited data. While it offers a critical new option for ALS patients, it also raises the possibility that limited federal dollars could eventually be tapped for more unproven treatments in other diseases.
During the 1980s and 1990s, Gonsalves and other HIV activists were instrumental in pushing drugmakers to provide early access to experimental medications. “Unless the drug is a miracle drug, it’s unlikely you would see efficacy in this type of research,” said Dr. Walter Koroshetz, of the National Institute of Neurological Disorders and Stroke.
Wallach spent several years working on the legislation with congressional staffers. It passed the House last year by a 423-3 vote, a rare display of bipartisanship that also underscored the group's political clout. “We used millions of dollars for our small expanded access program,” said Mary Kay Turner, a company executive. “So we did the maximum we could, but it was just a tiny sliver.”
Yahoo never seems to know who's side it's on - it's definitely not humanity's.
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