[Congressional Record Volume 166, Number 203 (Wednesday, December 2, 2020)]
[Senate]
[Pages S7164-S7165]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]



                  ALS Disability Insurance Access Act

  Mr. COTTON. Mr. President, I am very pleased the Senate has just 
passed the ALS Disability Insurance Access Act, 96 to 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 have been fortunate to know several people with ALS. One of my 
earliest supporters in my first campaign was the great Tommy May of 
Pine Bluff. Tommy, amazingly, has 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 have also been fortunate to know Kip Jackson of 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.
  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. There is a problem. Disability has a 5-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 is why, years ago, Senator 
Whitehouse and I introduced the ALS Disability Insurance Access Act, 
which will waive this 5-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 the 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 
has done to help get this bill across the finish line today. I am 
pleased so many of our colleagues supported this bill.
  I want to explain briefly 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, 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 in the next Congress 
to ensure the sustainability of both the Social Security Disability and 
the ALS trust fund. He has been a great partner in protecting these 
vital programs, and I know he will be in the future.
  Finally, I want to close by quoting Lou Gehrig's final address at 
Yankee Stadium in 1939. He had just received his fatal diagnosis. He 
didn't focus on the hardships that lay in his 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.
  I yield the floor.
  The PRESIDING OFFICER. The Senator from Rhode Island.
  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,

[[Page S7165]]

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.
  I yield the floor to my friend and colleague Senator Braun with great 
appreciation.
  The PRESIDING OFFICER. The Senator from Indiana.
  Mr. BRAUN. Mr. President, today I rise in proud support of 
legislation that will break down barriers for those with medically 
determined ALS.
  ALS is a progressive and fatal neurodegenerative disease that affects 
the motor nerve cells in the brain and spinal cord, gradually robbing 
patients of the ability to eat, speak, and eventually breathe.
  Currently, there are no meaningful treatments, no known cause, and no 
cure. But today, we have reason to hope.
  Since 2016, Senators Whitehouse and Cotton have championed the ALS 
Disability Insurance Access Act. Thanks to their tireless efforts, we 
are about to give ALS patients and their families more timely access to 
their Social Security disability benefits. No longer will these 
patients have to wait 5 months to access benefits they have earned.
  Passing this act will help alleviate some of the financial burdens 
that accompany an ALS diagnosis and will allow patients and their 
families to focus their precious time where it needs to be--on their 
loved ones and their battle against the disease.
  ALS is not a rare disease. More than 5,600 individuals in the United 
States are diagnosed each year, meaning 15 Americans are diagnosed each 
day. Not only is ALS common, it is also extremely personal to many in 
this Chamber, and it is personal to me.
  My cousin Anne Seitz lost her battle with ALS on Thanksgiving Day 10 
years ago. Her husband Terry Seitz currently resides in my hometown and 
is my State director of outreach.
  My budget and appropriations staffer, Robert Ordway, and his sister 
Jennifer lost their father, Douglas Raymond Ordway, to the disease.
  Kathy Laesch, a member of my Indianapolis team, has a son Brian who 
was diagnosed with ALS this summer. Brian, who also lost his father, 
has fortunately been enrolled in a clinical trial. We are all praying 
for his treatments to be effective. In the network of people I have 
come to know back home and here in the Senate, it shows you just how 
many lives are affected by it, and there are countless patients it has 
affected in the Hoosier State.

  I would like to personally thank Tina Kaetzel, the executive director 
of the Indiana ALS Association, for bringing this bill to the attention 
of our office.
  I would also like to give a heartfelt thank you to Corey Polen, of 
Brownsburg, IN, for his passionate and unwavering advocacy in support 
of the bill. Corey has become a friend to our office and has also been 
a champion of legislation I introduced, the Promising Pathway Act, 
which would provide new FDA authority to more rapidly approve drugs 
specifically for diseases like this.
  I would be remiss if I did not thank I AM ALS, especially Brian 
Wallach, Danielle Carnival, and Dan Tate, for their unyielding devotion 
to this and to fixing our broken healthcare system.
  Today, we come one step closer to accomplishing this pursuit. It has 
been a great honor to cofound the first-ever Senate ALS Caucus with my 
colleague across the aisle, Senator Chris Coons, of Delaware. The 
passage of the ALS Disability Insurance Access Act has been a priority 
for this caucus since its inception about a year ago. We readily 
acknowledge that the bill's passage is long overdue and that there is 
much more work to be done. We look forward to rolling up our sleeves 
and coming together to advance policies in the future that will 
continue to improve the quality of life for ALS patients.
  In doing so, we celebrate ALS patients--those we have lost, those who 
are currently fighting this dreadful disease, and those whose journeys 
have not yet begun. It is a disease that does not have the luxury of a 
large community from which to raise awareness and fight for reforms. 
ALS has no survivor community. It is up to us, then, to speak up for 
those who can no longer speak and to stand up for those who can no 
longer stand.
  To those whom we have lost to ALS and to those currently battling 
this disease--Anne Seitz, Douglas Raymond Ordway, Brian Laesch, Corey 
Polen, Brian Wallach, Dan Tate, and so many others impacted by ALS--we 
here in the U.S. Senate are your advocates.
  I yield the floor.
  The PRESIDING OFFICER. The Senator from Rhode Island.