The U.S. Senate earlier this month unanimously passed the Accelerating Access to Critical Therapies (ACT) for ALS Act. It’s legislation that was introduced by Sens. Chris Coons (Del) and Lisa Murkowski, and U.S. Rep. Mike Quigley (Ill) and Jeff Fortenberry (Neb). The bill passed the U.S. House of Representatives previously. The ACT for ALS Act would fund research into fast-progressing rare neurodegenerative and terminal diseases, like ALS, and early access to investigational therapies for patients suffering from them. Additionally, it would authorize $100 million annually to implement these priorities.
ACT for ALS authorizes new grants to support expanded access and research programs, which 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. It also allows for additional research into effectiveness of those interventions. The ACT for ALS Act would create a new Food and Drug Administration Rare Neurodegenerative Disease Grant Program to support other research and development on ALS and other life-threatening or severely debilitating neurodegenerative diseases.
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