This week, the U.S. House of Representatives passed the Accelerating Access to Critical Therapies (ACT) for ALS Act, bipartisan, bicameral legislation introduced by U.S. Senators Chris Coons (D-Del.) and Lisa Murkowski (R-Alaska) and U.S. Representatives Mike Quigley (D-Ill.) and Jeff Fortenberry (R-Neb.). The passage of the bill in the House comes just as the companion bill reaches 55 cosponsors in the Senate, with Senators Deb Fischer (R-Neb.) and Martin Heinrich (D-N.M.) having been the 50th and 51st co-sponsors.
This legislation would create the infrastructure necessary to fund early access to promising investigational therapies for patients suffering from fast-progressing rare neurodegenerative and terminal diseases, like ALS, and would authorize $100 million annually to implement these priorities.
ALS affects 1 in 300 people, often leaving patients with no more than three years to live following their diagnosis. ACT for ALS authorizes new grants to support expanded access and research programs. ALS also disproportionately impacts U.S. military service members. This expansion will bring investigational treatments for rapidly progressing diseases beyond their ongoing clinical trials to patients with diseases for which effective therapies don’t already exist and allow for additional research into the effectiveness of those interventions. It also creates a new FDA Rare Neurodegenerative Disease Grant Program to support other research and development on ALS and other life-threatening or severely debilitating neurodegenerative diseases.
“I’m excited to see our colleagues in the House pass this necessary legislation at the same time that we reach a critical milestone of support in the Senate,” said Senator Coons. “ACT for ALS will create critical new programs to improve coordination and collaboration on ALS, support additional research, and help more patients access promising investigational therapies.”
“The bipartisan support from the majority of my colleagues in the Senate on the ACT for ALS is great news for the ALS community,” said Senator Murkowski. “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. 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.”
“ALS is a devastating disease and unfortunately right now, far too few patients are able to access treatments to slow its progression. This bipartisan bill would help address that problem by bolstering research and the development of new treatments. Let’s get this passed so we can help those suffering from ALS and eventually find a cure,” said Senator Fischer.
“With more investments in ALS therapies and research, we can make much-needed progress in the fight against this disease,” said Senator Heinrich. “I’m proud to join Senator Coons and colleagues from both sides of the aisle to allocate the necessary funding for these services and provide adequate care for those affected by ALS.”