Murkowski, Coons, others reintroduce Justice for ALS Veterans Act

Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease that renders the body unable to control muscle movement. There is no effective treatment for the disease, no known cause, and currently no cure.

At present, ALS has a fatality rate of 100%. Veterans are twice more likely to develop ALS than the general public.

On February 28, Senators Lisa Murkowski (R-Alaska) and Senator Chris Coons (D-Delaware) announced the reintroduction of the ‘Justice for ALS Veterans Act.’ The legislation, if adopted, would guarantee that the surviving spouses of veterans receive all benefits due to them. The bill was first introduced in January 2022 by Senators Murkowski and Coons. Representatives Brian Fitzpatrick (R-Pennsylvania) and Charles Pappas (D-Christopher Pappas) are carrying the legislation in the House of Representatives.

“ALS is a horrible disease that indiscriminately wreaks havoc on families across the country – mine included,” said ALS Caucus Co-Chair Senator Murkowski. “I am proud to lead this bipartisan group of senators who are partnering with healthcare and advocacy groups to support those affected and their families. Our first reintroduction, the Justice for ALS Veterans Act, is an important first step that will aid the families of veterans who have been devastated by ALS. It’s not clear why veterans develop ALS at such a high rate, but it is clear that we should close the loophole that has prevented surviving families from receiving the full benefits that they are entitled to.”

“Every year, ALS robs thousands more Americans of their ability to speak, move and eventually to live,” said ALS Caucus Co-Chair Senator Coons. “Veterans who have fiercely served our nation are twice as likely to receive an ALS diagnosis, and yet, despite our efforts to support them and their families, they do not receive the full benefits they have earned in death. I’m working with Senator Murkowski to right this wrong and take better care of military families impacted by ALS.”

The current policy states that a surviving spouse and family of a deceased veteran who had a service-connected disability deemed fully debilitating for a continuous period of at least eight years prior to death receive an additional monthly stipend from the Department of Veterans Affairs (VA). However, the average life expectancy for an individual diagnosed with ALS is just two to five years after diagnosis, which means that many families of an ALS-diagnosed veteran are not able access this benefit. The ‘Justice for ALS Veterans Act’ ensures that surviving spouses and families of veterans who pass away from ALS receive this additional benefit, regardless of how long an individual was living with ALS prior to their death.

“Studies show our nation’s veterans have a higher likelihood of developing amyotrophic lateral sclerosis (ALS) compared to non-veterans. Veterans with ALS and their families experience rapid life changes in addition to significant financial stress," said Calaneet Balas, President and CEO of The ALS Association. “We express our gratitude to veterans and their families, as well as to the U.S. Senators who are championing the passage of the Justice for ALS Veterans Act. This legislation aims to guarantee that the families of veterans receive the benefits they rightfully deserve, without being penalized due to the rapid progression of ALS.”

"We are grateful to Senators Coons and Murkowski for their bipartisan leadership and commitment to veteran families impacted by ALS," said Andrea Goodman, CEO of I AM ALS. "Veterans with ALS are a vital part of our community of advocates, and we are dedicated to ensuring those who bravely served our country receive the benefits they need. This legislation is critical to our effort to ensure survivors of veterans with ALS receive the benefits they deserve."