WASHINGTON, DC — On Tuesday, the United States House of Representatives overwhelmingly passed the ALS Disability Insurance Access Act, a bill introduced by Representatives Seth Moulton (D-MA) and Peter King (R-NY). It has already passed the Senate and heads next to the White House where the president is expected to sign it into law. When that happens, it will eliminate the five-month waiting period that currently slows down ALS patients from receiving Social Security Disability Insurance benefits, a financial lifeline that helps them manage a debilitating disease.
“Today is a win for my friend Pete Frates and every brave American who refuses to be silenced by ALS,” Moulton said. “Nobody with ALS should have to wait for benefits that will help prolong their lives and help their families focus on what matters. It has taken a long time to get this bill across the finish line, but I’m so proud that we got this done.”
In 2017, Moulton and Frates announced the bill’s introduction together in Frates’ living room with members of the ALS Association, ALS patients, advocates and health care providers.
In February of 2019, Rep. Moulton, along with Congressman Peter King (R-NY), re-introduced H.R. 1407 to the House of Representatives. U.S. Senators Sheldon Whitehouse (D-RI) and Tom Cotton (R-AR) introduced a companion bill in the Senate which passed last week.
The House bill’s passage is in large part because of the advocacy of the ALS Association and I AM ALS, which are comprised of ALS patients like Frates, families affected by ALS and the people who care for ALS patients
Calaneet Balas, President and CEO of The ALS Association said: “We commend the House of Representatives and the Senate for passing the ALS Disability Insurance Access Act. We urge President Trump to sign the bill immediately, which will waive the arbitrary five-month wait for Social Security Disability benefits for people living with ALS. The bill will provide important support to people living with ALS and their families who face a devastating disease with an average life span of two to five years after diagnosis. This achievement is thanks to years of advocacy by people with ALS — some of whom have passed — and their families and supporters who worked hard to help Congress understand the need for this bill.”
I AM ALS CEO Danielle Carnival said: “The passage of the ALS Disability Insurance Access Act is the resounding hope of the ALS community coming together in a united effort to make change. The community — its fierce advocates — drove this progress forward and we will forever applaud their tenacity to change the course of history for those now and in future generations. We cannot thank our Congressional champions enough, including Representatives Seth Moulton and Peter King — every Member of Congress who stood up and voted for this legislation helped make a real impact for people living with ALS today.”
Amyotrophic Lateral Sclerosis, commonly known as ALS or Lou Gehrig’s disease, is a neurodegenerative disease affecting the ability of the brain to control muscle movements. There is no cure for ALS, and people with ALS progressively lose the ability to speak, walk, and breathe. The disease is 100 percent fatal, usually within five years of a diagnosis.
Moulton’s bill will allow patients to bypass the current five-month waiting period for Social Security Disability Insurance. The waiting period is designed to prevent people with rare medical conditions from receiving benefits before their conditions reverse course.
ALS’s quick and debilitating progression robs people of their jobs and employer-based insurance during the most challenging period of their lives. The waiting period needlessly slows down their access to a financial lifeline, because unlike some other rare diseases, ALS does not reverse course.
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