Accelerating Access to ALS Therapies
President Biden just signed the Accelerating Access to Critical Therapies (ACT) for ALS Act. The bill will fund research into neurodegenerative disorders such as amyotrophic lateral sclerosis (ALS). The act will create a U.S. Food and Drug Administration (FDA) Rare Neurodegenerative Disease Grant Program to support other research and development in the field of ALS and other severely debilitating neurodegenerative diseases. It will provide $100 million annually to help expedite the development of new therapies.
ALS, known as Lou Gehrig’s disease, is progressive neurological disorder that damages nerve cells, weakens muscles and causes disability. It leads to paralysis and death within an average of two to five years of diagnosis. ALS affects about one in 300 individuals. There is no cure, although treatments are available to help manage the condition. Lou Gehrig, the Hall of Famer from New York Yankees, became the poster child for the disease when it forced his retirement from baseball in 1939. It took his life shortly thereafter.
Since Gehrig’s death, hundreds of thousands of lives have been lost due to ALS.
The Accelerating Access to Critical Therapies for ALS Act will invest $100 million annually for the next five years. It will accomplish three important things:
- It directs the Department of Health and Human Services to issue grants that support research and access to promising new therapies for patients not enrolled in clinical trials. This will offer hope to patients who have no access to treatments that might work for them;
- It establishes a public-private partnership led by the National Institutes of Health and the Food and Drug Administration (FDA) to work with academia, nonprofits and the private sector to speed the development and evaluation of therapies for ALS and other neurodegenerative diseases; and
- It creates a grant program at the FDA to develop new ways to prevent, diagnose, treat, and cure ALS and other neurodegenerative diseases.
Prevent & Treat ALS
“ALS robs patients and families of so much,” said President Biden. “The immense physical, emotional, and financial toll. The loss of dignity. For too long, there have been no survivors of ALS. This bill could get us closer to changing that. One of the reasons I ran for President was to end cancer as we know it, just as we can end ALS and so many other diseases. As President, I’m calling for the creation of the Advanced Research Projects Agency for Health to advance breakthroughs in how we detect, treat, and cure Alzheimer’s disease and other forms of neurodegenerative diseases. I believe this bill is an example of that truth. I’m honored to sign the Accelerating Access to Critical Therapies for ALS Act.”
Senators Chris Coons (D-Delaware) and Lisa Murkowski (R-Alaska), and representatives Mike Quigley (D-Illinois) and Jeff Fortenberry (R-Nebraska) sponsored the ACT for ALS Act.
“This is all about hope. The ACT for ALS Act will make a meaningful difference for individuals and families across the country. Passage of this bill is a win for the ALS community and provides much-deserved hope to all who are affected by this disease,” said Murkowski. “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,” added Murkowski. “This bill offers new hope for those who are most in need, those who have very few options for treatment.”
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Gary Chandler is a prion expert. He is the CEO of Crossbow Communications, author of several books and producer of documentaries about health and environmental issues around the world. Chandler is connecting the dots to the global surge in neurodegenerative disease, including Alzheimer’s disease, Parkinson’s disease, Creutzfeldt-Jakob disease, chronic wasting disease and other forms of prion disease. The scientific name for prion disease is transmissible spongiform encephalopathy.
