FILE - In this Dec. 4, 2019, file photo, light shines on the U.S. Capitol dome in Washington. (AP Photo/Patrick Semansky, File)
WASHINGTON, D.C. — A bill to fund essential research into ALS is heading to President Joe Biden’s desk. And there’s at least one Utahn who’s beyond grateful for it this holiday season.
The Accelerating Access to Critical Therapies for ALS Act creates a grant program to fund new ALS treatments for patients who cannot take part in clinical trials. It also allocates money for research and recruits the FDA to help expedite the approval of therapies for rare neurodegenerative diseases.
ALS patients do not qualify under current “Right to Try” laws, which offer Congressional approval for terminally ill patients to access drugs in clinical trials.
Kyle Brown of Farmington suffers from ALS. KSL Newsradio first brought you his story in July and reported his accomplishment of finishing an Ironman triathlon in September. He was thrilled to learn about the bill’s passage overnight.
“It was a big night in taking a step forward to a cure and helping improve the lives of those with ALS currently,” Brown explained.
Brown admitted to being a little nervous the bill might get held up in the Senate for one reason or another. However, he was impressed to see it pass with unanimous consent.
“Anymore, you see so much fighting between the two parties. It’s good to see them band together on a real human issue,” Brown said.
As someone who tracked this bill’s progress from its original stages to this point, Brown said he and his family will be celebrating this milestone in addition to Christmas.
“We kind of see it as a perfect timed Christmas gift to anyone or any family with someone with ALS,” said Brown.