ALS Disability Insurance Access Act

Floor Speech

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Mr. WHITEHOUSE. Mr. President, let me thank Senator Cotton for his work with me in getting this bill to this happy result.

As the Presiding Officer knows, a bill can look like it was easy to get done when it passes 96 to 1, but that doesn't mean that the pathway was easy. This has been years and years of effort.

Senator Cotton really helped make it possible, so I am very grateful to him.

I also want to thank Senator Braun, who was the first Republican Member to join me in this and who has been a constant ally and source of support and encouragement.

I would also like to extend my appreciation to Chairman Grassley of the Finance Committee. This is a Finance Committee jurisdiction bill. Chairman Grassley was willing to let it go forward as long as he got his amendment--without insisting on his amendment being part of the bill. He got his vote. We voted it down, and the bill has now gone forward, and that reflects a very high degree of forbearance and courtesy from Chairman Grassley, which I respect and appreciate.

I also want to thank the ranking member on Finance, Senator Wyden, who has worked very hard to make sure that finance issues were resolved and that he was comfortable with it. He and Grassley were able to give it committee clearance to come to the floor with their support on these terms.

I also want to thank Senator Lee--Mike Lee--for his forbearance. He has been interested in this bill in the past. We debated it on the Senate floor, and he has allowed it to proceed in this way also, so I am grateful to Senator Lee.

Of course, that is all the gratitude here within the body for people who made the bill possible, but the people we really need to be grateful to and appreciative of are the ALS advocates who come to us to argue for support and for encouragement. They are filled with hope even though there is no cure. They continue to seek investment in the science to try to figure out a way to a cure. They show immense courage

This is a devastating, uniquely bad diagnosis for somebody to get. It is very hard for the individual who receives the diagnosis and also terrible for their family as well.

We have all had the experience in this body of seeing our constituents come to advocate on ALS and have the experience of seeing them the first time they come to us with a cane. When they come back the next year, they come back with a wheelchair and, the following year after that, come back with an electronic support mechanism with ventilator assistance and are still able to steer around, but it is an apparatus much more complex than a wheelchair. Then, in the next visit, it is their widow who comes alone.

We have had the chance to do something good here. It made no sense to require people who have this diagnosis wait 5 months before they can begin to get Social Security Disability Insurance benefits. Actually, very often, that first 5 months is when the support makes the most difference in terms of the quality of life that remains during the course of the illness.

We have been at this about 5 years now. Today is a good day in that sense.

I want to call to mind, just as an example of how this strikes at home--our small, local, home State paper, the Providence Journal, has a long tradition of being a very distinguished newspaper. Very often people who worked for it went on to the Wall Street Journal, the New York Times, the Washington Post, and big and famous newspapers and made national names for themselves. The Providence Journal is a really significant newspaper. Just in the course of my time in politics, two of its writers have been stricken with ALS--struck down, in fact, with ALS: Brian Dickinson, first, and Bill Malinowski afterward. Each had to learn to write in very unusual ways, including with their eyeballs by blinking as letters went by on a screen or by directing a laser.

It is a terrible disease, ALS. But one thing that it does is it displays the extraordinary human character of people who fight on through this increasingly disabling condition. The courage that they show and the way that they persist--in this case, to keep writing-- Brian Dickinson was writing columns really until the end of his life-- stand as an example to all of us of what courage in impossible circumstances looks like. That is a blessing they give to all of us.

With many thanks and much appreciation to J.R. Pagliarini, the president of Rhode Island ALS society, and his president emeritus, Kenneth McGunagle, and to their executive director, Beth Flanagan, I am happy to get this done.

Now we hope that in the final days of this Congress, our friends over in the House--with 300-plus cosponsors on the bill in the House--ought to be able to get out of each other's way and get this done before this Congress concludes.

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