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Moulton, King to Introduce Bipartisan Legislation Ensuring Faster and More Comprehensive Care for People with ALS

May 16, 2016 07:03PM ● By Bill Gilman

Congressman Seth Moulton

(Editor's note: The following information was submitted by the office of Congressman Seth Moulton.)

Washington, D.C. – Today, Congressmen Seth Moulton (D-MA) and Peter King (R-NY) will introduce The ALS Disability Insurance Access Act, a bipartisan bill to ensure that ALS patients are provided vital support and benefits in a more timely manner. The legislation would waive the Social Security Disability Insurance (SSDI) five-month waiting period for people living with amyotrophic lateral sclerosis (ALS), commonly referred to as Lou Gehrig’s Disease.  

“The cruel and unforgiving nature of ALS makes it imperative that we provide the best possible care for people living with the disease,” said Congressman Moulton. “I join millions of people in Massachusetts and around the world who have been inspired by my friend, Pete Frates. In the face of tremendous adversity, Pete and his family have focused their efforts on raising awareness and advocating for research towards finding a cure. You only need to spend a few minutes with Pete to appreciate his resilience, and 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 critical Social Security Disability Insurance (SSDI) benefits that people living with ALS and their families need and deserve.”

“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 Congressman King.

“An ALS diagnosis is a traumatic, emotional reality that every patient and their family must face,” said Nancy Fratesmother of ALS patient Pete Frates and member of the National Board of Trustees of the ALS Association. “Soon after diagnosis, they learn of the foreboding financial burden that looms. In a disease where time is a most precious commodity, a 5-month waiting period for benefits is cruel and unacceptable. Our family is honored to be represented by Congressman Seth Moulton who we consider a champion for ALS families. Today's bill is a huge step is helping ease some of the unimaginable pain ALS envelopes it's families in. We are so grateful for his leadership.”

ALS is neurodegenerative disease that affects nerve cells in the brain and the spinal cord, leading 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 currently no known cause or cure. 

In 2000, Congress waived the 24-month Medicare waiting period for people with ALS, ensuring that ALS patients could receive their Medicare benefit more quickly. However, under current law, people with ALS cannot receive their Medicare benefit until they are eligible to receive SSDI, which is subject to a five month wait period.

Moulton’s legislation builds on the previous actions taken by Congress and the Social Security Administration by waiving the five-month waiting period for critical SSDI benefits. A Senate version of the bill was introduced by Senator Sheldon Whitehouse (D-RI).

“People with ALS, who have lost the ability to walk, talk and even breathe on their own and who currently do not have an effective treatment option, should not be forced to wait to receive benefits they deserve and have paid for,” said Barb Newhouse, President and CEO of The ALS Association. “We applaud Representatives Moulton and King and Senator Whitehouse for their leadership in fighting for people with ALS and working to ensure they have access to the vital health and disability benefits that are so essential to everyone living with ALS and their families.”
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