WASHINGTON, Dec. 8, 2020 /PRNewswire/ --Congress passed a law ending the five-month waiting period for people with ALS to access Social Security Disability Insurance benefits on Tuesday. The ALS Disability Insurance Access Act, which now goes to President Trump for signature, comes after years of work from ALS advocates, who educated and built support among lawmakers from both parties.
"People living with ALS, along with their families and supporters, created the momentum and support for this bill," said Tommy May, who is living with ALS and serves on the Board of Trustees of The ALS Association. "We are grateful to all the members from both parties who voted to help people living with ALS and their families. Support for people with ALS is truly bipartisan."
ALS is a neurodegenerative disease that is 100 percent fatal. It takes about a year to confirm a diagnosis and there is no cure. Average life expectancy is two to five years following diagnosis. People with ALS lose the ability to initiate and control muscle movement. As a result, they lose their jobs and employer-based insurance during the most challenging periods of their lives. Recognizing the devastating nature of ALS, Congress passed bipartisan legislation in 2000 that waived the two-year waiting period for Medicare.
"This victory would not have been possible without the ALS community's countless letters, calls and virtual and in-person visits urging action by Congress," said Calaneet Balas, President and CEO of The ALS Association. "We are grateful to the entire community, and especially those people with ALS who worked on this issue and who have since passed."
"Because of its degenerative and often aggressive nature, some people living with ALS lose their fight with the disease before the five-month waiting period is over," Balas added. "It is essential that we eliminate this harmful waiting period and allow immediate access to disability benefits for those who have received an ALS diagnosis."
About The ALS Association
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 its 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 ALS.org.