The U.S. House of Representatives on Dec. 8 voted 423-3 to approve bipartisan, bicameral legislation introduced by U.S. Sen. Lisa Murkowski (R-AK) that would authorize $100 million annually to implement investigational therapies for patients suffering from rare neurodegenerative and terminal diseases, like amyotrophic lateral sclerosis, a.k.a. ALS or Lou Gehrig’s disease.
“As someone whose family has been impacted by this disease, I’m proud to see this bipartisan and bicameral legislation garner large support that will bring positive impacts for Americans living with ALS,” said Sen. Murkowski on Dec. 10.
The House-approved Accelerating Access to Critical Therapies (ACT) for ALS Act, H.R. 3537, which was introduced in May by U.S. Reps. Mike Quigley (D-IL) and Jeff Fortenberry (R-NE), has more than 330 cosponsors and is the identical bill to S. 1813, also introduced in May by U.S. Sens. Murkowski and Chris Coons (D-DE) in their chamber. The Senate bill has 58 cosponsors.
“The bipartisan support from the majority of my colleagues in the Senate on the ACT for ALS is great news for the ALS community,” Sen. Murkowski said. “This legislation will address barriers to treatments for those living with ALS and will accelerate research and development of therapies for ALS and other rare neurodegenerative diseases.”
If enacted, the measure would permit the U.S. Department of Health and Human Services (HHS) to award grants to eligible entities to facilitate patients’ access to investigational drugs that diagnose or treat ALS. The Food and Drug Administration (FDA) also would award grants to public and private entities to cover the costs of research and development of drugs that diagnose or treat ALS and other severely debilitating neurodegenerative diseases, according to the congressional record bill summary.
Additionally, HHS also would establish the Public-Private Partnership for Neurodegenerative Diseases between the National Institutes of Health, the FDA, and at least one eligible entity, the summary says, and the FDA would publish on its website a five-year action plan for fostering the development of drugs that improve or extend the lives of people living with rare neurodegenerative diseases.
The Senate received the House-approved H.R. 3537 on Dec. 9 for consideration.