Advocacy Announcement: ALS Disability Insurance Access Act

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The Les Turner ALS Foundation has joined with several other national ALS patient advocacy organizations (ALS Association, I AM ALS, Muscular Dystrophy Association and Team Gleason) in a letter to U.S. House of Representatives’ leadership requesting that a vote be scheduled immediately, to pass the ALS Disability Insurance Access Act (H.R. 1407). The bill, which would waive the five-month Social Security Disability Insurance (SSDI) waiting period for people with ALS, recently surpassed the requisite 290 cosponsors threshold to move forward.

In the current COVID-19 pandemic, this legislation is needed now more than ever. In addition to being a terminal disease, ALS is a financially devastating diagnosis irrespective of the pandemic, costing an average of more than $1.4 million over the course of the disease. The economic impact and job loss of COVID-19 is particularly acute not only for people living with ALS but also their family members who provide both caregiving and financial support. Timely access to SSDI and Medicare benefits to help pay for medical care, food and housing is essential to ease the impact of COVID-19 on people with ALS and their families.

There is 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 could become eligible for Medicare.

“We have been working together as an ALS community for several years to move this critical legislation forward,” said Les Turner ALS Foundation CEO Andrea Pauls Backman. “The time is NOW to pass the ALS Disability Insurance Access Act, which is so vitally needed by so many living with ALS and their family members. We thank all of our advocacy partners in their dedicated efforts to secure the needed cosponsors to move the bill to the House for a vote.”

To view a copy of the letter, click here.

If you would like to help in the efforts to pass the ALS Disability Insurance Access Act (H.R. 1407), please copy and paste the Tweet below and send via your personal Twitter account to House leadership.  Or you can retweet our post if you prefer, by clicking here.

Sample Tweet (copy and paste below):

I’m urging @SpeakerPelosi, @LeaderHoyer, @GOPLeader, @RepRichardNeal, @RepKevinBrady, @senatemajldr, @SenSchumer, @ChuckGrassley, & @RonWyden to pass the ALS Disability Insurance Access Act (S. 578/H.R. 1407). Immediate #SSDI benefit access is needed now! #ALSAdvocacy