Washington, DC – U.S. Senators Sheldon Whitehouse (D-RI) and Tom Cotton (R-AR) and Congressmen Seth Moulton (D-MA) and Peter King (R-NY) have reintroduced 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 into Social Security. This legislation would build on previous steps by Congress and the Social Security Administration to accommodate the difficult prognosis for those diagnosed with 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. 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.
“I am proud to co-sponsor this bill to eliminate the waiting period for those battling ALS,” said Senator Whitehouse. “It takes tremendous courage from patients, family members, and friends to cope with an ALS diagnosis. I hope that as a simple act of humanity we can set aside bureaucratic considerations and allow Americans who face the extraordinary blow of this diagnosis to immediately receive the benefits they have earned.”
“ALS is a progressive and disabling disease for which there is no cure. Those who suffer from this terrible disease endure enough pain, and they shouldn’t be subject to the usual waiting period for disability benefits—especially given their tragically short life expectancy,” said Cotton.
“Nobody bravely fighting Lou Gehrig’s Disease should have to wait months for benefits that will help them confront the disease because of government red tape,” Representative Moulton said. “Every American pays into Social Security with the idea that we have each other’s backs and that those benefits will become available to us when we need them—whether it is because of an ALS diagnosis, a disability or simply to help make ends meet in retirement. This bill will help our country keep that promise.”
“When battling an unforgiving and aggressive disease such as ALS, time is of the essence. That is why Congress must ensure that those diagnosed with this disease can immediately receive the SSDI benefits they have earned and try to mitigate the certain and devastating financial costs of their fight,” said Congressman King.
“Over the course of a five-month waiting period, people living with ALS will have only experienced progressive loss of function and will have incurred significant expenses for care and treatment,” said Calaneet Balas, President and CEO of The ALS Association. “We urge Congress to pass this legislation and remove the arbitrary five-month waiting period that creates an unfair financial burden on people whose life expectancy is so tragically abbreviated. People with ALS have earned and should receive both Medicare and Social Security Disability Insurance benefits immediately. They simply don’t have months to wait.”
In addition to Whitehouse and Cotton, the legislation is cosponsored in the Senate by Senators Michael Bennet (D-CO), Richard Blumenthal (D-CT), Roy Blunt (R-MO), Cory Booker (D-NJ), John Boozman (R-AR), Sherrod Brown (D-OH), Shelley Moore Capito (R-WV), Ben Cardin (D-MD), Bill Cassidy (R-LA), Susan Collins (R-ME), Chris Coons (D-DE), Kevin Cramer (R-ND), Dianne Feinstein (D-CA), Kamala Harris (D-CA), Doug Jones (D-AL), John Kennedy (R-LA), Angus King (I-ME), Amy Klobuchar (D-MN), Patrick Leahy (D-VT), Ed Markey (D-MA), Martha McSally (R-AZ), Bob Menendez (D-NJ), Jeff Merkley (D-OR), Lisa Murkowski (R-AK), Jack Reed (D-RI), Jacky Rosen (D-NV), Mike Rounds (R-SD), Marco Rubio (R-FL), Bernie Sanders (I-VT), Chuck Schumer (D-NY), Jeanne Shaheen (D-NH), Kyrsten Sinema (D-AZ), Debbie Stabenow (D-MI), Jon Tester (D-MT), Thom Tillis (R-NC), Chris Van Hollen (D-MD), Elizabeth Warren (D-MA), and Roger Wicker (R-MS).
The companion legislation in the U.S. House of Representatives is cosponsored by 89 Members.
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