As a cosponsor of H.R. 1407, Congresswoman Chellie Pingree (D-Maine) today celebrated the unanimous passage of the ALS Disability Insurance Access Act by the U.S House of Representatives. The bipartisan legislation waives the five-month waiting period for Social Security Disability Insurance (SSDI) and Medicare benefits for ALS patients to receive the care they need as soon as possible.
“Time works against those living with ALS. ALS is unique in its rapid progression: five months can be the difference between life and death for patients,” said Pingree. “I was proud to join my colleagues on both sides of the aisle today to remove the prohibitive five-month waiting period for those living with ALS to receive federal disability and Medicare benefits. I hope to see this bill signed into law quickly so that ALS patients and their families can get the supports they need as soon as possible.”
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, is a progressive motor neuron 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.
Acknowledging the unique and rapid progression of this disease, Congress waived the 24-month waiting period to enroll in Medicare for people with ALS in 2000 to ensure that patients receive their Medicare benefit more quickly. However, Medicare coverage is tied to the approval of their application to receive Social Security Disability Insurance (SSDI), which has a mandatory five-month waiting period before individuals receive their benefits. While Congress intended to allow individuals with ALS to enroll in Medicare immediately upon diagnosis, SSDI’s waiting period unnecessarily delays the Medicare benefit they have earned.
Despite millions of dollars in research funding and the astounding efforts of the viral Ice Bucket Challenge, there is currently no known cause or cure.