Three organizations focused on amytrophic lateral sclerosis (ALS) as well as other rare neurodegenerative diseases, have just celebrated the House of Representatives’ passage of the ACT for ALS (H.R.3537/S.1813).
The organizations championing this act included the Muscular Dystrophy Association (MDA), the ALS Association, and I AM ALS. Congressman Quigley and Congressman Fortenberry also helped to champion the bill. In total, this bill had a greater number of cosponsors than any other bill discussed in Congress in 2021. There were more than 330 cosponsors in the House as well as 50 in the Senate.
About The Act
This Act would do three specific things. First and foremost, it would establish a grant program which would fund research for ALS treatments with the aim to minimize disease progression and ensure treatment safety. Specifically, it would assist those who are unable to participate in any clinical trials.
Secondly, it would advance research for neurodegenerative diseases with a FDA Rare Neurodegenerative Disease Grant Program. The aim of this new program is to ensure that federal agencies such as the FDA remain focused and attentive to the needs of this patient population. The goal is to work quickly to uncover treatments, approve those treatments, ensure those treatments will be covered for patients, and ensure that all patients have access to the life-changing therapies that they need.
Thirdly, it would create a partnership led by both the NIH and the FDA titled the Health and Human Services (HHS) Public Private Partnership for Rare Neurodegenerative Diseases. This partnership would be the very first federal program who focuses solely on the acceleration of research for rare neurodegenerative disease treatments.
Looking Forward
The organizations who assisted in the development of this bill explain how vital rare disease advocates were for getting it to this stage. They were determined, and didn’t stop until they got to where they needed.
ALS patients need a new treatment option urgently. The overwhelming support from the House for this Act demonstrates how important its passage is, and how important timely action is.
You can read more about this bill and the push for quick action here.
