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Quigley, Fortenberry Create New Pathways for Treatment in Fight Against ALS, Neurodegenerative Diseases

Jun 1, 2020
Press Release

Today, U.S. Representatives Mike Quigley (IL-05) and Jeff Fortenberry introduced the bipartisan Accelerating Access to Critical Therapies for ALS Act. This legislation would create the infrastructure necessary to fund early access to promising clinical trial therapies for patients suffering from fast-progressing neurodegenerative and terminal diseases, including ALS.

ALS will affect 1 in 300 people in their lifetimes, typically giving patients no more than 3 years to live following diagnosis. Quigley and Fortenberry’s bill will make $75 million available in FY 2021 and 2022 as part of a pilot to provide grants to expanded access programs. This expansion will bring treatments for rapidly progressing diseases beyond their ongoing clinical trials to patients with diseases for which effective therapies don’t already exist.

“What many don’t know is that when we find a cure for one of the fastest progressing neurodegenerative diseases, like ALS, we will unlock critical breakthroughs for other diseases like Parkinson’s, Alzheimer’s, Frontotemporal Dementia and beyond, which affect 50 million Americans each year,” said Quigley. “This legislation not only paves the way to curing a litany of diseases but provides a model for how we speed up our drug treatment pipeline and bring it into the 21st century.”

The Accelerating Access to Critical Therapies for ALS Act will also establish a Center of Excellence for Neurodegenerative Diseases at the FDA to accelerate the development and approval of therapies for neurodegenerative diseases. The Center will be modeled after the FDA’s Center of Excellence for Oncology that has driven forward many monumental discoveries in cancer research.

“One month ago, my wife’s little brother died from ALS. He was 37, with a wife and four small children. His suffering, the heartache, the toll on his family is repeated over and over in families throughout America. Let’s do something about it,” said Fortenberry.