[Congressional Record Volume 166, Number 203 (Wednesday, December 2, 2020)]
[House]
[Pages H6041-H6042]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                     AMYOTROPHIC LATERAL SCLEROSIS

  The SPEAKER pro tempore (Mrs. Fletcher). Under the Speaker's 
announced policy of January 3, 2019, the gentleman from Nebraska (Mr. 
Fortenberry) is recognized for 60 minutes as the designee of the 
minority leader.
  Mr. FORTENBERRY. Madam Speaker, when I was about 8 years old, I read 
a book. It was on a famous New York Yankee first baseman named Lou 
Gehrig. He was nicknamed ``The Iron Horse'' because of his great 
athletic ability. He could hit, he could field. His durability was 
legendary. As a great athlete, his character was marked by that ability 
to adjust and overcome.
  But then something happened. Amyotrophic lateral sclerosis caused Lou 
Gehrig to lose control of his bodily functions. That famous durability 
of his was mocked by this cruel, unforgiving, neurodegenerative 
disease, which is aggressive, that we now know as ALS. There was no 
cure then and there is no cure now. ALS has also come to be known as 
Lou Gehrig's disease.
  But before he died in 1941, Madam Speaker, at a ceremony at the home 
plate in Yankee Stadium, Lou Gehrig looked up at the crowd and he said:

       For the past 2 weeks, you've been reading about a bad 
     break. Yet today, I consider myself the luckiest man on the 
     face of the Earth.

  That story, Lou Gehrig's story, stayed with me as a child.
  Now, Madam Speaker, as a Member of the United States Congress, fast 
forward decades later. This same cruel disease has swept upon my own 
family and we, as a family, quickly learned about the profound trauma 
it has caused so many other Americans.
  ALS takes about 2 to 5 years to destroy a body and exhaust a family. 
It is 100 percent fatal. Its victims lose the ability to write and walk 
and talk and eat and move and, finally, to breathe.
  Earlier this year, several hundred persons deeply affected from ALS, 
along with their courageous caregivers and friends, joined me and 
another Member of Congress on the other side of this body to discuss a 
legislative initiative.
  We are all now really familiar with Zoom calls, and on that 
particular Zoom call, on the little chat box on the side of the screen, 
one kind person said: ``I wish all of America could hear this 
constructive conversation between Members of Congress.''
  Madam Speaker, we are in the midst of a horrific pandemic. COVID-19 
has become a daily reminder of our fragility and mortality. It is an 
urgent health crisis, and scientists and government regulators 
worldwide are responding to this urgency, as are we, by accelerating 
the testing and improving approval processes for treatments and 
vaccines.
  I recently discussed these dynamics with our Food and Drug 
Administration Commissioner, Dr. Stephen Hahn, who was optimistic that 
we may just be able to put this pandemic behind us by early summer.
  So, Madam Speaker, I divert for a moment because I want to applaud 
the

[[Page H6042]]

speedy success in getting vaccines quickly and safely approved, and I 
am hopeful for their swift delivery to those most in need.
  But as we continue to fight our way through this global pandemic, 
imagine for a moment that we could harness that same determination and 
goodwill to rethink how we fight numerous other diseases.
  Madam Speaker, in over 50 years, there have been 50 clinical trials 
for ALS. ALS patients have submitted themselves to these tests in 
accordance with the rules of the current regulatory framework. Many of 
them received placebo therapies. All of them stopped receiving 
treatment when the trials were done, even if the therapies were 
affording some relief. They sacrificed their lives to science, then 
they quietly and gradually weakened and died.
  As we all know, drug trials can drag on for a decade or longer. Most 
ALS victims do not live that long. This overly deliberate regulatory 
process does not match the urgency of the disease. It is not saving 
lives; it is killing hope.
  Madam Speaker, when a process isn't working, it is time to change the 
process.
  So, I am proud of something, Madam Speaker. We have a new bill. It is 
bipartisan and it is bicameral. The House and the Senate are working 
together on this. It is called Accelerating Access to Critical 
Therapies for ALS. Let me put it another way; it is called ACT for ALS. 
It accelerates access for patients with rapidly progressing diseases 
toward investigational treatments through a new public-private program 
coordinated by the Department of Health and Human Services.
  The bill provides expanded access to promising therapies through 
public-private funding, so that more patients suffering terminal 
diseases, like ALS, can access potentially life-extending therapy. It 
also works toward a more consistent and streamlined review of drug 
applications.
  ACT for ALS is just a beginning effort to make the regulatory and 
research establishment more responsive to patients suffering right now. 
It does so by attacking and correcting the injustices and inequities at 
the core of our drug development and healthcare systems.
  It is nobody's fault. We set up a research paradigm. We set up a 
regulatory process in order to try to give order to the process of 
helping people. But it is now time to reexamine some fundamental 
premises, particularly in this disease category and others.
  Currently, our ACT for ALS has 217 cosponsors, nearly half this body, 
more and more every day.
  Key to this effort, Madam Speaker, have been the many, many 
courageous ALS survivors who are advocating for this bill.
  Now, one of those is 36-year-old Mayuri Saxena.
  I want to show you something, Madam Speaker. Four years ago, Mayuri 
was diagnosed with ALS and today she can no longer stand or walk, use 
her legs or arms, swallow without help, and she cannot speak.
  But let's go back to that earlier point I made about Lou Gehrig's 
durability. This is Mayuri's mind. By communicating with her eyes and 
telling an artist what she saw, she imagined this beautiful painting.

                              {time}  1945

  I wanted to first bring it up here because it is quite extraordinary. 
You could apply it to so many lessons around here, Madam Speaker. The 
symbols of our two political parties, the elephant and the donkey, are 
chaining themselves to someone in need with the hope of our great 
country, our symbol, transcending above.
  Mayuri sees that as her hope and America's hope. I have never seen 
something so beautifully and eloquently expressed as a call for these 
Washington words that we use, like bipartisanship. It is simply a call 
to care and to compassion and to be smart.
  This act is well-researched. We have gotten technical assistance from 
the Food and Drug Administration, as well as the National Institutes of 
Health. We have worked with those who are representing and advocating 
for new movement to figure out the right set of processes by which we 
again can establish a new procedure inside the Department of Health and 
Human Services and expanded access to treatments. We can do this. As we 
are rushing to the end of the year, we have got a lot of problems, and 
we have very few days to solve them. But let's solve this one.
  Madam Speaker, ALS affects 30,000 Americans, 6,000 of whom will die 
every year from the disease. One in six of those, by the way, Madam 
Speaker, is a veteran. One such veteran is Pat Quinn, by whom our 
country, through his effort, was socialized and embraced this Ice 
Bucket Challenge. He thought of that in order to raise global awareness 
of the brutality of the disease. Pat Quinn just recently died.
  Madam Speaker, it has been 75 years since Lou Gehrig himself died. 
There is still no cure, though there are some now promising therapies 
and drugs. Again, the ACT for ALS would allow expanded access now to 
those promising therapies and drugs.
  Madam Speaker, I have met so many beautiful people who have come to 
my office to explain their own journey with ALS. These are people of 
good heart. They are courageous, they are fighters, and they have 
created a network of solidarity trying to rethink more creatively as to 
how to attack through sound science the underlying disease. They 
represent a movement that has a strong desire for the right type of 
science and a real hope to stop the suffering.
  Madam Speaker, COVID-19 has shown us one thing: we can act quickly if 
we want to. We can act quickly if we are determined.
  I think it is time to apply those lessons to diseases that have 
silently killed so many for so long. We can create, and we have to 
create, a more humane response and a responsive system for those in 
need. Especially for diseases like this, where the time is so narrow.
  Madam Speaker, about 4 years ago now, a young man in his thirties was 
diagnosed with this disease. He noticed his hand trembling. He went 
through a battery of tests, but the moment he noticed that, he knew--
for whatever reason he knew--in his heart of hearts it was the worst 
case scenario. He knew it was ALS. I don't know how he knew, he just 
knew. He and his wife struggled and hoped that it would be something 
else that they could possibly live with. But he died this spring, about 
4 years after he contracted the disease, leaving behind his wife and 
his four little children. His name is Joe Gregory. He is my wife's 
little brother.
  Madam Speaker, for Joe, for the artist, for the imaginative artistry 
of Mayuri, for the memory of Lou Gehrig and Pat Quinn, and for all of 
those who are still suffering from this cruel, relentless, and 
unforgiving disease, let's make hope real. Let's work to get this done.
  As I said, I have worked and seen so many beautiful people, some of 
whom have expressed to our office that their wish on their deathbed, 
communicated through their families, was that this act would pass. When 
I reflect on that, Madam Speaker, again, we have got numerous other 
problems here. We have to get a budget done, we have to avoid a 
government shutdown, and we probably ought to come together on a new 
COVID-type relief package. I am working on that, too.
  But how could I not speak?
  Why did I read a book on Lou Gehrig when I was 8 years old that 
stayed with me all these years?
  I don't know.
  But how could I not speak on behalf of these beautiful people who 
just want us to do the right thing, not out of anger and not out of 
protest, but out of solidarity to show that we can get things done 
because we care?
  When we act with our will and resolve, we can help.
  Madam Speaker, one more thing before I leave, I keep reflecting on 
those words of Lou Gehrig. I don't suffer from ALS. I don't pretend to 
know the profound difficulty that causes in those individuals' hearts, 
but I can say this: I believe that I am also the luckiest man alive 
because I get to stand with people like this and try to help.
  Madam Speaker, I thank you for listening, and I yield back the 
balance of my time.

                          ____________________