Pete Frates Bill In Honor Of Late ALS Victim Passes Congress

BEVERLY, MA — On the one-year anniversary of his death following a courageous, seven-year battle against amyotrophic lateral sclerosis, commonly known as Lou Gehrig's Disease, a federal bill in honor of North Shore native Pete Frates is headed to the White House where it is expected to be signed into law.

The ALS Disability Insurance Access Act, which U.S. Rep Seth Moulton (D-MA) introduced in Congress, ensures that those diagnosed with the degenerative nerve disease can receive Social Security Insurance benefits immediately without having to go through a five-month waiting period.

"(This) is a win for my friend Pete Frates and every brave American who refuses to be silenced by ALS," said Moulton in a statement. "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."

It was one year ago that the Beverly native and former St. John's Prep of Danvers and Boston College baseball star died from complications from the disease, which at this time is considered 100 percent fatal. He was 33 years old.

Frates was diagnosed with ALS in 2012, and in 2014 helped launch the ALS Ice Bucket Challenge, which is credited with raising awareness of the disease and more than $200 million for ALS research as of 2019.

The ALS Disability bill was introduced in 2017 during an announcement in Frates's living room, along with Moulton and members of the ALS Association, ALS patients, advocates and health care providers. U.S. Rep Peter King (R-NY) is a co-sponsor of the bill, while U.S. Sen. Sheldon Whitehouse (D-RI) and U.S. Sen. Tom Cotton (R-AR) introduced a companion bill that passed the Senate last week.

"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," said Danielle Carnival, I AM ALS CEO. "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."

Because ALS progresses at different rates for every patient, the five-month waiting period can slow down access to critical financial resources if patients are unable to maintain employer-based health insurance.

The average life span from ALS diagnosis to death is between two and five years.

"We commend the House of Representatives and the Senate for passing the ALS Disability Insurance Access Act," Calaneet Balas, President and CEO of The ALS Association, said. "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."

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Scott Souza is a Patch field editor covering Beverly, Danvers, Marblehead, Peabody, Salem and Swampscott. He can be reached at Scott.Souza@Patch.com. Twitter: @Scott_Souza.