Let's Get the ALS Disability Insurance Act Through Congress!
We are excited to share that the U.S. Senate passed the ALS Disability Insurance Access Act (S. 578)! As you know, the ALS community has worked tirelessly with congressional champions over the years laying the groundwork for this bill, as well as educating lawmakers and the public about the rapid progression of ALS and the long delays in diagnosis.
Senate passage is a victory, but it’s only half the battle. The House of Representatives must pass the bill before they adjourn at the end of next week. If the House does not act, the bill will have to be re-introduced in the new Congress and we will have to start from scratch.
The ALS Disability Insurance Access Act is cosponsored by 302 members in the House and has the support to pass, but we need those cosponsors to request a vote now from House leadership. We need your help to make this happen. Follow the steps below:
Funding Increase for DOD ALS Research Program (ALSRP)
On November 10, the Senate recommended that funding for the DOD ALSRP be increased from $20 million to $40 million. The recommendation also included report language we drafted to encourage the ALSRP to expand its current research portfolio to include early-stage clinical trials. This increase for the next fiscal year and the report language builds on our success last year in doubling funding for the DOD ALSRP from $10 to $20 million. The House of Representatives has appropriated $20 million for the program.
Funding Levels Maintained for National ALS Registry and Biorepository
The House and Senate have recommended maintaining current funding for the National ALS Registry and Biorepository at $10 million. This level of funding ensures that this program will be able to sustain its core functions as an important data resource for researchers, notifying enrollees about new opportunities for clinical trials, and spearheading research into risk factors for and prevention of ALS.
Petition Presented to the FDA and Amylyx
On November 13, The ALS Association delivered to the FDA, and separately to Amylyx, our petition representing more than 50,000 people calling for access to AMX0035 to be made available to people with ALS as soon as possible. The petition was delivered with a cover letter signed by the Association and I AM ALS. Thank you for your support of the petition and for promoting it to your audiences.
National Institutes of Health (NIH) Receives Additional Funding for COVID Research
The House passed $47 billion for NIH, including $5 billion for COVID supplemental spending. Increases in NIH funding are critical in boosting spending on ALS research. Next steps include a House-Senate “conference committee” to hash out the funding differences between the two bills.
