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96-1 Senate vote OKs bill to speed up ALS benefits

‘Thrilled,’ state advocate says by Frank E. Lockwood | December 3, 2020 at 3:52 a.m.

WASHINGTON -- The U.S. Senate voted 96-1 Wednesday to speed up disability benefits for Americans who are diagnosed with amyotrophic lateral sclerosis -- commonly referred to as ALS.

The bill's sponsor, U.S. Sen. Sheldon Whitehouse, D-R.I., worked closely with U.S. Sen. Tom Cotton, R-Ark., to secure passage of the measure, which would waive the five-month waiting period that delays patients' access to Social Security Disability Insurance.

The legislation now heads to the other side of the Capitol. The House version of the bill, sponsored by U.S. Rep. Seth Moulton, D-Mass., already has more than 300 co-sponsors, including all four of Arkansas' congressmen.

Members of the ALS Association, Arkansas Chapter Inc. welcomed Wednesday's vote.

"Yes, we are thrilled about this news," said Jennifer Necessary, the group's executive director.

ALS is incurable and is "100 percent fatal, usually within two to five years of diagnosis," Necessary said in an email.

The progressive neuromuscular disease, which strikes an estimated 5,000 Americans each year, killed New York Yankees Hall of Fame first baseman Lou Gehrig in 1941; eight decades later, it is still frequently referred to as Lou Gehrig's disease.

"Because of the debilitating nature of the disease, people diagnosed with ALS lose their jobs and employer-based insurance during the most challenging periods of their lives," she said. "And often, a person's spouse becomes a full-time caregiver, which means the family is out two salaries."

"There is great shock and frustration that there is an arbitrary 5-month wait before [disability] benefits start. Many people living with ALS have lost abilities well before their diagnosis and need [disability insurance] help immediately," she said.

In a floor speech, Cotton said he had been "fortunate to know several people with ALS," including Tommy May, former chairman and CEO of Simmons First National Corp. in Pine Bluff.

May, Cotton said, was "one of my earliest supporters from my first campaign."

"Tommy has amazingly lived with ALS for nearly 15 years, beating the odds with courage and good humor. Given the gift of time, he devoted his energy to finding a cure for ALS, serving as a trustee on the national ALS Association board. ALS advocates are lucky to have a fighter like Tommy on their side," the senator said.

"I've also been fortunate to know Kip Jackson of North Little Rock and Thomas Galyon of Rogers and others. Sadly, these ALS advocates have passed away. But I know how pleased they would be to see this bill cross the finish line today," Cotton said.

Jackson, age 48, died in March after battling ALS for nearly a decade. Galyon died in November 2017 at age 71; he had been diagnosed with ALS in 2014.

U.S. Sen. Mike Lee, R-Utah, said helping ALS patients is "a good cause" but argued that the bill had too narrow a focus.

ALS, he said, was just "one of many similarly debilitating and deadly diseases that Americans are suffering from today."

"While not as well known, all of these victims are also deserving of the same kind of special attention and accommodation in federal policy," he added.

Whitehouse portrayed the bill as overdue and thanked his Republican colleagues for helping to clear the way for a vote.

While the bill passed 96-1, "that doesn't mean that the pathway was easy. This has been years and years of effort," he said. "Sen. Cotton really helped make it possible so I'm very grateful to him."

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