Moulton introduces bill to speed benefits to those with ALS

Feb. 17--SALEM -- Salem Congressman Seth Moulton has helped introduce a bipartisan bill to accelerate benefits for those diagnosed with amyotrophic lateral sclerosis, or ALS.

Moulton and Congressman Peter King, R-New York, on Thursday re-introduced The ALS Disability Insurance Access Act, according to a statement from Moulton's office. The legislation would waive the five-month waiting period to be eligible for Social Security Disability Insurance for those living with the neurodegenerative disease.

Also called Lou Gehrig's disease, ALS affects nerve cells in the brain and spinal cord. In many cases, the disease leads to total paralysis and death within two to five years of diagnosis. There's no known cause or cure, and Moulton's statement noted that veterans are twice as likely to develop ALS than the general population. Moulton is an Iraq War veteran who served four tours as a Marine Corps infantry officer.

"ALS is a cruel and unforgiving disease," said Moulton, "and it's vital that we provide the best possible care for people living with it."

The issue resonates on the North Shore -- Moulton's district is home to Pete Frates of Beverly. A student athlete at St. John's Prep and former captain of the Boston College baseball team, Frates was diagnosed with ALS in March 2012 at age 27.

Frates is best known for cofounding what became the viral sensation of the ALS Ice Bucket Challenge in 2014. The challenge involved people pouring ice water on themselves, sharing videos, and donating to the ALS Association. The outpouring has raised $220 million worldwide for ALS, according to reports, and led to a breakthrough in identifying a new gene related to the disease.

"I'm one of the millions of people inspired by my friend, Pete Frates," Moulton said. "You only need to spend a few minutes with Pete to appreciate his resilience, and Pete and his family have been fierce advocates for research towards a cure. We owe it to Pete, his family, and all Americans impacted by ALS to provide top quality care."

King shares similar sentiments.

"Given the prognosis for those diagnosed with ALS," King said in the statement, "it defies commons sense and decency to require these same individuals to wait for benefits they have paid for and most importantly, deserve."

Nancy Frates, Pete Frates' mother and a member of the national board of trustees of the ALS Association, called the current five-month waiting period for benefits "cruel and unacceptable."

"An ALS diagnosis is a traumatic, emotional reality that every patient and their family must face," Nancy Frates said in the statement. "Soon after the diagnosis, they learn of the foreboding financial burden that looms."

Nancy Frates said her family is honored to be represented by Moulton, who they consider "a champion for ALS families."

"Today's bill is a huge step in helping ease some of the unimaginable pain ALS envelopes its families in," she said.

Under current law, people diagnosed with ALS cannot receive Medicare benefits until they are eligible to receive Social Security Disability Insurance, which is subject to a five-month wait period.

Barbara Newhouse, president and CEO of the ALS Association, said five months could mean the difference between life and death for an ALS patient.

"Nearly half of those living with ALS will die within 16 months of diagnosis," she said in the statement, "so it's critical that they receive the benefits they deserve and have paid for as quickly as possible."

Staff writer Ethan Forman can be reached at 978-338-2673, by email at [email protected] or on Twitter at @DanverSalemNews.

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