WASHINGTON – U.S. Senators Chris Coons (D-Del.) and Lisa Murkowski (R-Alaska), Co-Chairs of the ALS Caucus, announced the introduction of the Justice for ALS Veterans Act. This bill, first introduced in January 2022, would guarantee that the surviving spouses of veterans receive all benefits due to them. Representatives Brian Fitzpatrick (R-Pa.) and Chris Pappas (D-N.H.) introduced the legislation in the House.

“Every year, ALS robs thousands more Americans of their ability to speak, move, and eventually to live,” said 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.”

“ALS is a horrible disease that indiscriminately wreaks havoc on families across the country – mine included,” said 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 a 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.” 

“Our veterans fought for us, and when they face ALS—a devastating, fast-moving disease—we must fight for them and their families. Denying a surviving spouse benefits because their loved one didn’t live long enough to meet an arbitrary requirement is not just unfair—it is a betrayal of our commitment to those who served. The Justice for ALS Veterans Act will right this wrong and ensure that the families of our brave service members receive the support they have earned and deserve,” said Rep. Fitzpatrick, Co-Chair of the Bipartisan House ALS Caucus.  

“Studies show our nation’s veterans have a higher likelihood of developing amyotrophic lateral sclerosis 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."

“PVA thanks Senators Murkowski and Coons, Representatives Fitzpatrick and Pappas, and other Members of Congress who have prioritized the reintroduction of the Justice for ALS Veterans Act. Denying benefits for surviving spouses of ALS veterans due to the aggressive nature of this service-connected disability does a disservice to them. The Justice for ALS Veterans Act will ensure these survivors receive the additional financial support that is afforded to other veterans' survivors,” said Heather Ansley, Chief Policy Officer of Paralyzed Veterans of America.

Background:

  • 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 as likely to develop ALS as the general public.
  • 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). While ALS is deemed a service-connected disability, 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 to 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.
  • The ALS Caucus remains committed to improving the lives of those living with amyotrophic lateral sclerosis (ALS) and accelerating efforts toward a cure. The previous work of the Senate ALS Caucus includes:
    • Advocating for Continued Federal Funding: Securing resources for ALS research at the National Institutes of Health and the Department of Defense.
    • ACT for ALS Act Implementation: Ensuring the continued rollout of the legislation, which expands access to investigational therapies for those with ALS and strengthens research into effective treatments.
    • Community Engagement: Working with ALS patients, caregivers, and advocates to inform and shape federal policy.

A co-chair of the Senate ALS Caucus, Senator Coons has long been a proud advocate for ALS patients in the Senate. He has introduced several bipartisan bills to address ALS, including the ACT for ALS Act, which funds essential research into rare, neurodegenerative illnesses such as ALS. The bill was signed into law by President Biden in 2021.