The ALS Disability Insurance Access Act would eliminate five-month waiting period before ALS patients can access disability benefits

WASHINGTON– U.S. Senator Amy Klobuchar (D-MN) announced that legislation to ensure disability benefits for ALS patients has cleared the Senate. Klobuchar joined Senators Sheldon Whitehouse (D-RI) and Tom Cotton (R-AR) to introduce the ALS Disability Insurance Access Act, bipartisan legislation to eliminate the five-month waiting period before ALS patients can receive the Social Security Disability Insurance benefits they earned by contributing to Social Security.  The legislation would build on previous steps by Congress and the Social Security Administration to accommodate the difficult prognosis for those diagnosed with ALS. The bill now heads to the House of Representatives. 

“ALS is a devastating disease, yet many patients wait far too long to receive the insurance benefits they need and have earned.” Klobuchar said. “This bipartisan bill will help ensure that patients living with ALS receive support in a timely way. I am pleased to see this bill clear the Senate.”

Amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig’s disease, is a neurodegenerative disease affecting the ability of the brain to control muscle movements.  Individuals with ALS progressively lose the ability to speak, walk, and breathe.  The intended purpose of a five-month waiting period is to allow temporary conditions to reverse.  However, there is currently no cure or treatment to halt or undo the effects of ALS, and some ALS patients lose their fight with the disease before ever receiving benefits.  The ALS Disability Insurance Access Act would help alleviate some of the financial hardship that accompanies an ALS diagnosis, and support those living with ALS and their families.

Klobuchar has long advocated for those living with ALS.

Senator Klobuchar and former Senator David Vitter (R-LA) first introduced the bipartisan Steve Gleason Act of 2015 to provide immediate relief for patients who had been denied access to SGDs due to a Medicare policy change that occurred in 2014. The bill allowed them to have access to the medical equipment they needed and created the SGD exception, but had a sunset date of October 1, 2018. Klobuchar and Senator Bill Cassidy (R-LA) introduced the bipartisan Steve Gleason Act of 2017—which was signed into law as part of the Bipartisan Budget Act in February 2018—to build upon the successes of the Steve Gleason Act of 2015 and permanently fix the Centers for Medicare and Medicaid Services policy that limited access to SGDs for people with degenerative diseases.

The Steve Gleason Act is named for New Orleans Saints safety Steve Gleason who lives with ALS. Since being diagnosed with ALS, Gleason has since needed to use a wheelchair and lost his ability to speak. Gleason’s SGD has allowed him to regain his ability to communicate.