Senators Coons, Murkowski reintroduce legislation to support spouses of veterans who died from ALS

Legislation would fix policy to ensure access to benefits for surviving spouses of veterans that died from ALS

U.S. Senators Chris Coons (D-Del.), the co-chair of the Senate ALS Caucus, and Lisa Murkowski (R-Alaska), a member of the Senate ALS Caucus, re-introduced the Justice for ALS Veterans Actbipartisan legislation that would ensure the surviving spouses of veterans receive the full benefits they are owed. Companion legislation was introduced in the House last October by U.S. Representatives Elissa Slotkin (D-Mich.) and Brian Fitzpatrick (R-Pa.).

According to the ALS Association, military veterans are twice as likely to develop ALS as those who haven’t served in the military. The Department of Veterans Affairs (VA) provides an additional monthly financial benefit to the surviving spouse and family of a deceased veteran who had a service-connected disability rated totally disabling for a continuous period of at least eight years immediately preceding death. However, the average life expectancy for an individual diagnosed with ALS is just 2-5 years after diagnosis, resulting in many families whose spouses have not reached the eight-year threshold to allow them access to this benefit. The Justice for ALS Veterans Act would ensure surviving spouses of veterans who die from ALS receive these payments, regardless of how long a veteran had ALS prior to death.

“ALS is a particularly cruel and brutal disease that takes the lives of thousands of Americans each year, including many veterans who have sacrificed so much for this nation,” said Senator Coons. “Denying the families of veterans who succumb to this disease because of a bureaucratic test shortly after the death of a parent, spouse, or other loved one is simply adding insult to injury. Our military families deserve so much better, and that’s why I’m working with Senator Murkowski to ensure families impacted by ALS have access to the benefits they rightfully deserve.”

“Under current law, the spouses and families of veterans with ALS are denied full benefits if they didn’t survive at least eight years with the disease. This is tone-deaf and unreasonable considering the typical life expectancy for a person living with the disease is two to five years following diagnosis. Our current policies fail to acknowledge that the impact of ALS – losing a loved one to this cruel and unforgiving disease – will remain with their loved ones far beyond their passing,” said Senator Murkowski. “Regardless of how long the veteran lived with ALS prior to losing their battle, we have a responsibility to support our veterans and their families. I am proud to join Senator Coons in support of the ALS and military community through the reintroduction of this legislation.”

“ALS is at least twice as likely to affect veterans as the civilian population. That means those who signed up to serve our country are at least twice as likely to face a relentless, currently 100% fatal disease in ALS. On top of that, their loved ones are being denied financial resources due to the rapid progression of this horrific disease,” said Dr. Megan Miller, I AM ALS Director of Research and Policy. “The Justice for ALS Veterans Act will ensure all survivors of veterans who died of ALS receive the financial support they are due. We applaud Senators Coons and Murkowski for their continued dedication to the ALS and veteran communities, and wholeheartedly support this effort.”

“The ALS Association supports increasing compensation for surviving spouses of veterans who die from ALS, regardless of how long they lived with the disease,” said Neil Thakur, Chief Mission Officer of the ALS Association. “ALS not only impacts the person with the disease, but their entire family, and causes great financial stress. This bill can help ease the burden for surviving spouses. We thank Senators Coons and Murkowski for introducing this important legislation which Congress should pass immediately.”

“Amyotrophic Lateral Sclerosis, an aggressive disease that leaves many veterans totally incapacitated, is recognized by the VA as a presumptive service-connected disease and, due to its progressive nature, automatically rates any diagnosed veteran at 100% once it is determined to be service connected,” said Jim Marszalek, DAV National Service Director. “Individuals diagnosed with ALS have an average lifespan of 2-5 years. Sadly, many veterans are unable to meet DIC’s 8-year requirement for the additional amounts payable to survivors. The Justice for ALS Veterans Act would allow survivors of veterans who pass away due to service-connected ALS to receive that additional monthly compensation, regardless of the length of time it was service-connected. DAV applauds Senator Coons and Senator Murkowski in their efforts in providing justice for ALS veterans and their families.”

"Survivors should not be denied a benefit others receive simply because the service-connected disease their veterans acquired made it nearly impossible for them to meet an eight-year life expectancy requirement,” said Heather Ansley, Director of Government Relations at Paralyzed Veterans of America. “We thank Senators Coons and Murkowski for introducing this important legislation and urge the Senate to pass it quickly.”

ALS is a fatal neurodegenerative disease that destroys the body’s ability to control muscle movement. There is currently no known cause and no cure. Senators Coons and Murkowski were the lead Senate sponsors of the Accelerating Access to Critical Therapies (ACT) for ALS Act, which was signed into law by President Biden in December after receiving unanimous support in the Senate.