WASHINGTON (WHDH) - Wednesday marks one year since the co-founder of the ice bucket challenge Pete Frates died from ALS. Just one day before, a bill he helped inspire hit the desk of the president.
“This is a victory for all ALS patients today. It is a victory for people who are soon to be diagnosed with this disease,” Nancy Frates said.
The ALS Disability Insurance Access Act passed overwhelmingly in the House of Representatives Tuesday and has already passed the Senate. It was championed in part by Massachusetts Congressman Seth Moulton.
“Today we consider ourselves incredibly lucky because we got to know Pete Frates,” Moulton said during his speech on the House floor.
The bill will eliminate the five-month waiting period ALS patients must currently endure before they can get Social Security Disability Insurance benefits.
“Some people it takes so long for them to get diagnosed when they can no longer work. Then they get the diagnosis and then they have to wait five months for disability insurance,” Frates explained.
The intended purpose of those five-months is to allow temporary medical conditions to reverse but, ALS patients are different. There is no cure and most live an average of two to five years.
“Every day counts with this devastating disease for the people who are diagnosed with it and for their family and friends who are working to support them,” Moulton said.
He and the Frates family first dropped the bill off in Washington together in 2017. Years later – they all hoped Pete could have been here for its passage but say they will not give up their fight.
“I am so proud to have worked with him on it and I just wish Pete could have seen this day,” Moulton said.
“I guess it’s almost poetic in some ways because Pete felt he was chosen, that he was given this disease and he was chosen to change the status quo of it and today is another one of those hurdles,” Frates said.
The ALS Association and I AM ALS also helped to get the bill passed.
It now awaits the signature of the president.
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