ALS Insurance Access Act, Before US Congress, Would End SSDI Waiting Period for ALS Patients

A bill that would waive the five-month waiting period for Social Security Disability Insurance (SSDI) for people with amyotrophic lateral sclerosis (ALS) — legislation supported by the ALS Association during its recent National ALS Advocacy Day in Washington, D.C. — has been introduced into the U.S. Congress.

Called the ALS Disability Insurance Access Act, the legislation was introduced by Sen. Sheldon Whitehouse (D-Rhode Island) in the Senate, and by Reps. Seth Moulton (D-Massachusetts) and Peter King (R-New York) in the House.

“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,” Barb Newhouse, the ALS Association’s president and chief executive officer, said in a press release. “We applaud Senator Whitehouse and Representatives Moulton and King 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.”

The legislation builds on previous actions taken by Congress and the Social Security Administration (SSA), acknowledging the  rapidly progressive and disabling nature of ALS. Congress waived the 24-month Medicare waiting period for ALS patients  in 2000, and SSA has in place a policy to expedite reviews of ALS claims for SSDI and Supplemental Security Income (SSI) benefits. But under current law, ALS patients who qualify for SSDI still must wait five months before they can begin to receive both SSDI and Medicare.

“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,” Rep. King said.

SSDI can be a crucial benefit to people with ALS and their families, because of the household income lost to the disease.

“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. In fact, nearly 50 percent of people with ALS will die within 16 months of diagnosis,” Newhouse said.

ALS, also known as Lou Gehrig’s disease, is a neurodegenerative disease that has no cure and only one approved treatment, which extends survival at modest rates. For unknown reasons, veterans are twice as likely to develop ALS as the general population.

“The cruel and unforgiving nature of ALS makes it imperative that we provide the best possible care for people living with the disease,” Rep. Moulton said. “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 SSDI benefits that people living with ALS and their families need and deserve.”