I am very pleased the Senate has just passed the ALS Disability Insurance Access Act, 96-1, a bill that will bring relief to many Americans suffering from a terrible disease.
ALS is a progressive neurodegenerative disease. People with ALS tragically lose the ability to control their muscles, leading to paralysis and ultimately death. There is no cure.
Many are familiar with ALS because of the baseball legend who succumbed to it at the height of his career, Lou Gehrig.
Others know Lou Gehrig’s Disease because it has touched them, or a neighbor, or a loved one.
I’ve been fortunate to know several people with ALS. One of my earliest supporters from my first campaign is Tommy May of Pine Bluff. 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.
I’ve also been fortunate to know Kip Jackson of North Little Rock and Thomas Galyon of Rogers. Sadly, these ALS advocates have passed away. But I know how pleased they would be to see this bill cross the finish line today.
ALS is not like other diseases. It typically appears, without warning, later in life. Its life expectancy within 16 months is only 50 percent—no better than a coin toss.
In other words, ALS strikes fast—and it strikes hard.
People with ALS typically apply for disability benefits through Social Security. But there’s a problem: disability has a five-month waiting period. This waiting period is meant to ensure that applicants aren’t suffering from a temporary affliction. And under most circumstances, it is appropriate.
But of course, ALS isn’t temporary. For those who have it, given the odds they face, every month counts.
That’s why Senator Whitehouse and I introduced the ALS Disability Insurance Access Act years ago, which will waive this five-month period for people with ALS.
This will ensure they have rapid access to Social Security in the early days of their diagnosis, so they don’t have to worry about benefits, and can focus instead on things that really matter during what could be their final months on Earth.
On their behalf I want to thank Senator Whitehouse for his partnership over the years. I want to thank Senator Braun for what he’s done to help get this bill across the finish line today. I’m so pleased that so many of our colleagues supported this bill. I also want to briefly explain my position on the amendment offered by Senator Grassley.
I support the amendment in concept, but I opposed the amendment today because the original purpose of this bill has always been to address ALS specifically. I will support Senator Grassley’s language in future legislation, but to pass this bill in the final days of the 116th Congress in the Senate, and especially in the days ahead in the House, it was vital that we send the unamended bill to the House.
I look forward to working with Senator Grassley next Congress to ensure the sustainability of both Social Security Disability and the Old-Age Trust Fund. He’s been a great partner in protecting these vital programs, and will be in the future.
And finally, I want to close by quoting from Lou Gehrig’s final address at Yankee Stadium in 1939. Lou Gehrig had just received his fatal diagnosis.
But he didn’t focus on the hardships that lay in his brief future. Instead, he famously exclaimed, “I consider myself the luckiest man on the face of the Earth. … I might have been given a bad break, but I have an awful lot to live for.”
The same could be said of every person living with ALS today. They have an awful lot to live for. And this bill will help them live.