The ALS Association

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Brian Frederick
The ALS Association
(202) 464-8612



ALS Disability Insurance Access Act Reintroduced

Bipartisan Legislation Eliminates Five-Month Waiting Period for SSDI Benefits for People with ALS

Washington, D.C. (February 27, 2019) — The ALS Association urges Congress to pass legislation to waive the Social Security Disability Insurance (SSDI) five-month waiting period for people living with ALS. The ALS Disability Insurance Access Act was reintroduced in the 116th Congress today as S.578 in the Senate by Senator Sheldon Whitehouse (D-RI) and Senator Tom Cotton (R-AR). Representatives Seth Moulton (D-MA) and Peter King (R-NY) introduced the companion bill in the House. The bill was introduced with strong bipartisan support from 40 senators and 90 representatives.

The ALS Association works with more than 20,000 people with ALS annually through its nationwide system of chapters. Multiple research studies indicate that people who have served in the military are at far greater risk of developing ALS and dying from the disease than those with no history of military service.

“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.”

Senator Whitehouse said, “I am proud to co-sponsor this bill to eliminate the waiting period for those battling ALS. 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.”

Senator Cotton said, “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.”

Representative Moulton said, “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. 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.”

Representative King said, “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.”

There is a strong precedent for waiving the five-month waiting period before people with ALS receive access to SSDI benefits. In 2000, Congress recognized the unique features of ALS and passed a bipartisan bill waiving the standard two-year waiting period before people with the disease become eligible for Medicare.

Click here for more information about The ALS Association’s legislative priorities for 2019.

About ALS
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over the course of the disease, people lose the ability to move, to speak, and eventually, to breathe. On average, it takes about a year before a final ALS diagnosis is made. The disease is always fatal, usually within five years of diagnosis. There is no cure. For unknown reasons, veterans are twice as likely to develop ALS as the general population.

About The ALS Association
The ALS Association is the largest private funder of ALS research in the world. The Association funds global research collaborations, provides assistance for people with ALS and their families through our nationwide network of chapters and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association builds hope and enhances quality of life while urgently searching for new treatments and a cure. For more information about The ALS Association, visit our website at

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