WASHINGTON, D.C. – U.S. Sens. Mike Braun (R-Ind.) and Chris Coons (D-Del.), co-chairs of the bipartisan Senate ALS Caucus, applaud Senate passage of S. 578, the ALS Disability Insurance Access Act of 2019, introduced by Sens. Sheldon Whitehouse (D-R.I.) and Tom Cotton (R-Ark.)—both founding members of the Senate ALS Caucus.  This landmark legislation represents a long overdue win for the ALS community.

The bill removes barriers for ALS patients seeking access to the Social Security Disability Insurance benefits they earned. Specifically, the bill eliminates a mandatory five-month waiting period for patients with medically-determined ALS.  While the statutory purpose of the waiting period is to allow temporary conditions to reverse, there is currently no cure or treatment to halt or undo the effects of ALS, and many ALS patients lose their fight with the disease before ever receiving benefits.  S. 578 will help alleviate some of the financial hardship that accompanies an ALS diagnosis.

Passing S. 578 has been a priority for the Senate ALS Caucus since its founding in January 2020.   

“Today’s win is about the patients and their families,” said Senator Mike Braun, “The financial burden of ALS is staggering and time is of the essence for those diagnosed with ALS.  The ALS Disability Insurance Access Act is a step in the right direction toward providing timely access to SSDI benefits to ALS patients.”

“Today, we celebrate a bipartisan win for the ALS community. The Senate voted in favor of timely financial support for those facing a recent ALS diagnosis,” said Senator Coons. “Speedy access to support programs like SSDI after a diagnosis is essential – and one of the priorities we set when we launched our bipartisan caucus earlier this year. We must continue to build on this progress to make life easier for ALS patients and their loved ones.”

“Allowing Americans who face this difficult diagnosis to immediately receive the benefits they have earned is a simple act of humanity that will make life easier for ALS patients and their families,” said Senator Whitehouse.  “I hope the House will act quickly so we can finally eliminate this bureaucratic obstacle.”

“Americans suffering from ALS shouldn’t have to wait for assistance, especially given their tragically short life expectancy—and now they won’t have to. By waiving the statutory disability benefits waiting period, our bill makes support available to those suffering from this terrible disease much faster. I’m grateful to my Senate colleagues for supporting this important legislation, and I strongly urge the House to do the same," said Senator Cotton.

“ALS is a cruel disease that progresses fast, currently without a cure.  Help can't come soon enough once someone is diagnosed and this bill recognizes that.  It takes courage to be a true champion for patients and we are grateful to Senators Braun, Coons, Whitehouse and Cotton for driving this legislation forward,” I AM ALS CEO Danielle Carnival said. “To the thousands of advocates who drove this bill forward, you are our hope.  You are changing history one step at a time.  This passage in the Senate is in celebration of your efforts.”

"The ALS Association and ALS community urges the House to immediately pass the ALS Disability Insurance Access Act, which just passed the Senate," said Calaneet Balas, President and CEO of The ALS Association. "The legislation would make SSDI benefits accessible to people with ALS right away. Our community has worked tirelessly with congressional champions over the years laying the groundwork for this bill, educating lawmakers and the public about the rapid progression of ALS and the long delays in diagnosis. Over the course of a five-month waiting period, many people living with ALS will experience serious loss of ability and will have incurred significant expenses for care and treatment. They urgently need support.”

The Senate ALS Caucus is working to uphold its mission to advance policies that improve the quality of life patients with ALS, and S. 578 passing is an encouraging victory toward that mission. Passage of S. 578 follows Senate passage of S. Res. 588 earlier this year, which aimed to raise awareness of ALS by designating May 2020 as “ALS Awareness Month.”

ABOUT ALS:

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.  There is no effective treatment for the disease, no known cause, and—currently—no cure.

ABOUT THE SENATE ALS CAUCUS:

The Senate ALS Caucus founded in January 2020 by Senators Chris Coons, D-Delaware, and Mike Braun, R-Indiana. The Caucus brings together senators from both sides of the aisle who share a commitment to working collaboratively to advocate on behalf of ALS patients and their families to: raise awareness about the difficulties faced by ALS patients and their families; advance policies that improve the quality of life for ALS patients; expand the network of support for those suffering from ALS; and advocate for investments in research that will enhance our understanding of the causes of ALS, identify effective treatments, and eventually discover a cure. 

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