December 17, 2021

ACT for ALS Passes both U.S. House and Senate

Landmark ALS funding legislation sets aside half a billion dollars for research on neurological disease

On December 16, the U.S. Senate unanimously passed the Accelerating Access to Critical Therapies (ACT) for ALS Act (S. 1813/H.R.3537), following passage in the House the week before.

There was unanimous support from Michigan’s delegation apart from one representative who did not vote.  The legislation now heads to President Biden to be signed into law.

“This is such an important gift for those of us fighting to treat and prevent ALS, but more importantly for those suffering from this horrible disease,” said Eva Feldman, M.D., Ph.D.  “That’s especially true for us in Michigan and the Midwest, where we see the highest prevalence of ALS, and for those in the military, who are disproportionately affected by the disease.”

ACT for ALS authorizes $100 million annually for the next five years to the Secretary of Health and Human Services to award grants to support a three-pronged strategy against ALS and rare neurodegenerative disease:

  • Expand access for individuals to investigational drugs for the prevention, diagnosis, mitigation, treatment, or cure of amyotrophic lateral sclerosis (ALS).
  • Establish and implement a Public-Private Partnership for Neurodegenerative Diseases between the National Institutes of Health (NIH), the Food and Drug Administration (FDA), and other eligible entities to develop treatments for ALS and other rare neurodegenerative diseases.
  • Fund research on, and development of, interventions intended to prevent, diagnose, mitigate, treat or cure, ALS and other rare life-threatening or severely debilitating neurodegenerative diseases in adults and children.

Amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) involves the degeneration of motor neurons that control muscles, causing muscle wasting and loss of voluntary muscle control. ALS eventually leads to an inability to breathe and ultimately death.  There is no cure, and little can be done to slow the progression of the disease.  The average ALS survival is 2 to 4 years after diagnosis.

The legislation was 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.).

“This is all about hope. The ACT for ALS Act … is a hard-earned win for the ALS community and provides much-deserved hope to all who are affected by this disease,” said Sen. Murkowski in a joint press release. “As someone whose family has been impacted by ALS, I know how terrible this disease is and how tirelessly the ALS community continues to fight for legislation to improve treatments and quality of life and search for a cure.

“This bill now heading to the President’s desk is a huge step forward. It will offer new hope for those who are most in need, those who today — tragically — have very few options for treatment.”