The ALS Association

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Brian Frederick
The ALS Association
(202) 255-9443



ALS Disability Insurance Access Act Introduced

Legislation Eliminates Five-Month Waiting Period for Social Security Disability Insurance for People with ALS

Washington, D.C. (February 17, 2017)— The ALS Association urges Congress to pass new legislation to waive the Social Security Disability Insurance (SSDI) five-month waiting period for people who are living with ALS. The ALS Disability Insurance Access Act was introduced as S.379 in the Senate by Senator Sheldon Whitehouse (D-RI) and Senator Tom Cotton (R-AR). Sen. Bill Nelson (D-FL) and Lisa Murkowski (R-AK) are also original sponsors of the Senate bill. Representatives Seth Moulton (D-MA) and Peter King (R-NY) introduced the companion bill as H.R.1171.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no cure, and only one drug modestly extends survival by only a few months.

“This legislation is especially important for people with ALS, for whom five months can mean the difference between life and death,” said Barbara Newhouse, President and CEO of The ALS Association. “Nearly half of those living with ALS will die within 16 months of diagnosis, so it’s critical that they receive the benefits they deserve and have paid for as quickly as possible.”

Newhouse continued, “This effort is truly bipartisan and we applaud those champions in the Senate and House for fighting for people with ALS and working to ensure they have access to the vital health and disability benefits.”

Senator Cotton noted: “ALS is a devastating disease that causes unbelievable pain for both patients and their families. Those who endure this diagnoses should not be forced to wait five-months for SSDI benefits—particularly when the average life expectancy for the disease is three years following diagnosis. I am proud to support this legislation and look forward to working with my colleagues to bring it to the floor for a vote.”

Senator Whitehouse noted: “ALS poses plenty of tough challenges. Waiting for the benefits you’ve earned shouldn’t be one of them,” said Whitehouse. “I’m proud to stand with the Rhode Islanders, their families, and all Americans fighting ALS to introduce this legislation in the Senate.”

SSDI provides critical benefits to people disabled with ALS and is a vital resource for ALS families who are unable to work and generate an income due to the disabling and fatal nature of the disease. Moreover, eligibility for SSDI enables people with ALS to immediately qualify for Medicare as Congress waived the 24-month Medicare waiting period for people with ALS in 2000. However, under current law, people with ALS who qualify for SSDI still must wait five months before they can begin to receive both SSDI and Medicare, regardless of the degree of disability and regardless of how fast the Social Security Administration approves claims.

“ALS is a cruel and unforgiving disease, and it's vital that we provide the best possible care for people living with it,” said Representative Moulton. “I'm one of the millions of people inspired by my friend, Pete Frates. You only need to spend a few minutes with Pete to appreciate his resilience, and Pete and his family have been fierce advocates for research towards a cure. We owe it to Pete, his family, and all Americans impacted by ALS to provide top quality care. I’m proud to introduce this bipartisan bill to provide the SSDI benefits that people living with ALS and their families need and deserve."

The ALS Disability Insurance Access Act would waive the five-month waiting period for people disabled with ALS and enable them to immediately begin to receive SSDI benefits and Medicare. The legislation builds on previous actions taken by Congress and the Social Security Administration that recognize the unique nature of ALS, a disease the progresses rapidly, always is disabling and always is fatal. In fact, Congress already waived the 24-month Medicare waiting period for ALS, the only time the waiting period has ever been waived. SSA also has implemented a number of policies to expedite the review of ALS claims for SSDI and Supplemental Security Income benefits.

“Given the prognosis for those diagnosed with ALS, it defies common sense and decency to require these same individuals to wait for benefits they have paid for and most importantly deserve,” said Rep. King. “I am proud to stand with the ALS community in support of this bipartisan bill.”

King continued, “Congress originally justified the five-month waiting period by saying it allows time for temporary conditions to reverse. Unfortunately, that’s not currently possible for someone with ALS."

About The ALS Association
The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. For more information about The ALS Association, visit our website at

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