Today, the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS) -- legislation led by U.S. Representatives Mike Quigley (IL-05) and Jeff Fortenberry (NE-01) -- passed the House of Representatives with overwhelming bipartisan support. ACT for ALS would help people living with ALS get early access to promising treatments and help researchers gain a better understanding of neurodegenerative diseases.
"Today, I proudly cast my vote for the ACT for ALS. I did this on behalf of every American who has ever been touched by ALS and for every advocate who has tirelessly fought to expand treatment. It has been my honor to help lead this legislation in the House, so that people living with ALS can access promising treatments and put us closer to one day finding a cure. I look forward to working with my colleagues in the Senate to get this bill over the finish line and on the President's desk," said Quigley. "While an ALS diagnosis has long been considered a death sentence, in this moment we can all join my friend Brian Wallach, who likes to say, "Not today, ALS.' No, definitely not today."
"Today, the U.S. House of Representatives did something truly miraculous: it gave real hope to those suffering from the cruel, merciless disease of ALS. For over 50 years and over 50 clinical trials, ALS patients have submitted themselves to tests and trials, therapies and placebos, in accordance with the rules of the current health care policy framework. But progress has been uneven, even debatable, with serious impediments to promising new treatments. Many ALS patients have sacrificed their lives to science, as they gradually weakened and died. Today, with over 330 cosponsors, we advanced a new way," Fortenberry said.
"ACT for ALS represents a monumental shift for those suffering from ALS and other neurodegenerative conditions. The bill does two main things: it transforms the paradigm of disease research and regulation and creates a new pathway to promising new treatments. It drives the hope. With this transformative piece of public policy, we can break through faster for those who have suffered so much," Fortenberry added.
The legislation passed with bipartisan support from 423 Members of Congress and now heads to the Senate for consideration, where it is led by Senator Chris Coons (D-DE), co-chair of the Senate ALS Caucus, and Senator Lisa Murkowski (R-AK).
"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."