Senators Coons and Murkowski reintroduce bill to support spouses of deceased ALS veterans

01.12.22

Legislation would set policy to ensure access to benefits for surviving spouses of deceased ALS veterans

U.S. Senators Chris Coons (D-Del.), co-chair of the Senate ALS Caucus, and Lisa Murkowski (R-Alaska), member of the Senate ALS Caucus, reintroduced the ALS Veterans Justice Act, bipartisan legislation that would ensure surviving spouses of veterans receive all the benefits owed to them. Complementary 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 have not 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-related disability considered totally disabling for a continuous period of at least eight years immediately preceding the death. However, the average life expectancy for someone diagnosed with ALS is only 2 to 5 years after diagnosis, so many families whose spouses have not reached the eight-year threshold to access this service. the Justice for ALS Veterans Act would ensure that the surviving spouses of deceased ALS Veterans receive these payments, regardless of how long a Veteran suffered from ALS prior to death.

“ALS is an especially cruel and brutal disease that kills thousands of Americans every year, including many veterans who have sacrificed so much for this nation,” said Senator Coons. “To deny the families of veterans who succumb to this disease through a bureaucratic test soon 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 make sure families affected by ALS have access to the benefits they rightly deserve.

“Under current law, spouses and families of veterans with ALS are denied all benefits if they have not survived at least eight years with the disease. This is tone deaf and unreasonable given that the typical life expectancy for someone living with the disease is two to five years after diagnosis. Our current policies fail to recognize that the impact of ALS – the loss of a loved one to this cruel and unforgiving disease – will remain with their loved ones well beyond their passing,” said Senator Murkowski. “However long the veteran lived with ALS before losing their battle, we have a responsibility to support our veterans and their families. I am proud to join Senator Coons in supporting ALS and the military community through the reintroduction of this legislation.

“ALS is at least twice as likely to affect veterans as the civilian population. This means that those committed to serving our country are at least twice as likely to face a relentless and 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 horrible disease,” said Dr. Megan Miller, I AM ALS Director of Research and Policy. “The Justice for ALS Veterans Act ensure that all survivors of deceased ALS veterans receive the financial support they are due. We commend Senators Coons and Murkowski for their continued dedication to ALS and the veteran communities, and we wholeheartedly support this effort.

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

“Amyotrophic Lateral Sclerosis, an aggressive disease that renders many veterans completely incapacitated, is recognized by the VA as a presumptive service-related illness and, due to its progressive nature, automatically rates any veteran diagnosed as 100% a once it is determined to be service-related,” said Jim Marszalek, National DAV Service Manager. “People diagnosed with ALS have an average lifespan of 2 to 5 years. Unfortunately, many veterans are unable to meet the DIC’s 8-year requirement for additional amounts payable to survivors. The ALS Veterans Justice Act would allow survivors of veterans who died of service-related ALS to receive this additional monthly compensation, regardless of how long it was service-related. DAV commends Senator Coons and Senator Murkowski in their efforts to bring justice to ALS veterans and their families.

“Survivors should not be denied a benefit that others receive simply because the service-related illness their veterans contracted 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 bill 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 main senatorial sponsors of the Accelerating Access to Critical Therapies (ACTs) for ALS, which was signed into law by President Biden in December after receiving unanimous support from the Senate.

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