Remarks on Signing the Accelerating Access to Critical Therapies for ALS Act
The President. Good afternoon. As we enter this Christmas and New Year, the bill I'm about to sign into law truly represents the spirit of the season, in my view—a season of hope and light, goodness and grace, and the power of unity in everyday Americans doing extraordinary things.
That's Accelerating Access to Critical Therapies for ALS Act—that's what we're going to talk about today. ALS, known as Lou Gehrig's disease, attacks the nervous system and weakens the muscles, making it hard to lift up a spoon to eat or to take a step to walk. It leads to paralysis and ultimately leads to death within an average of 2 to 5 years of diagnosis.
Since Lou Gehrig, the Hall of Famer from New York Yankees, announced his retirement from baseball in 1939 because of the disease, no cure has been found. Treatments are still limited, and the outcomes are still the same. That's 82 years with hundreds of thousands of lives lost.
But today we're finally closer than ever to new treatments and hopefully, hopefully—God willing—a cure. And it's because of the movement led by the patients and caregivers and members of Congress of both parties, many of whom are joining us today virtually. Patients like Brian Wallach and his wife Sandra. They met in 2008 working in the New Hampshire primary for Barack Obama, believing in a movement of hope and change. Then they both worked for the Obama-Biden White House, driven by public service, beloved by colleagues, anchored by the love of family.
In 2015, they became parents with their first child, Ella. In 2017, their second child, Naomi, was born. The entire world was in front of them—perhaps a run for elective office home in Illinois—at home in Illinois, or working for this White House; raising two beautiful daughters—until everything changed: the coughs, the cramps, the twitches.
Within days of welcoming baby Naomi, Brian was diagnosed with ALS at the age of 36 and given 6 months to live. That was 4 years ago. And Brian and Sandra are joining us today virtually—I say hi to you both—because they turned their pain into purpose.
They talked to doctors and researchers. They met more patients and families. They met with their elected leaders: Senators Durbin and Duckworth, and Representative Quigley. And they rallied their family and friends and built another campaign powered by hope and change as well.
They were bold. They were told that it'd be hard, but they were—stayed bold. And there'd be too many obstacles, they were told. But because of the nature of the disease, there wouldn't be enough time, were—they were told, I suspect.
But they never gave up. They launched "I AM ALS" to put a face on the movement, powered by the people. They partnered with patients like Dan Tate, who advocated for these issues for a long time as an ally and then as an ALS patient himself.
They were joined by patients like Mayuri and Sandy Morris, joined by caregivers like Deb Paust, Christina Thompson—excuse me, Christa Thompson, and groups like ALS Association and the Muscular Dystrophy Association that helped organize the community—a community that wrote countless letters and convened countless meetings with members of Congress and their staffs, many with their own personal connections to this terrible disease, to get this bill passed.
I want to thank House Speaker Pelosi, Minority Leader McCarthy, Senate Majority Leader Schumer, and Minority Leader McConnell.
Thank you to the members of the House, where it had 331 cosponsors, this bill, and it passed by a vote of 423 to 3, including the bill's lead sponsors: Mike Quigley, Democrat from Illinois; Jeff Fortenberry, Republican from Nebraska.
And like many others: Anna Eshoo, Democrat from California; Brett Guthrie, Republican—Kentucky; Jan Sendowsky [Schakowsky]* from—Democrat from Illinois; Cathy McMorris, Republican from Washington State; Frank Pallone, Democrat from New Jersey; and members of the House ALS Caucus.
And if you're wondering why I'm saying whether they're Democrats or Republicans—to make the point: When we act together, we get things done. And this is totally—totally, totally a bipartisan effort.
And from the United States Senate, there were 64 cosponsors, and it passed with unanimous support, led by Chris Coons of Delaware; Lisa Murkowski of Alaska; Patty Murray of Washington State; Richard Burr of North Carolina; Dick Durbin and Tammy Duckworth, Democrats of Illinois.
And we're joined today by Secretary of Health and Human Service, Xavier Becerra, whose department will play a vital role in implementing the law.
Folks, that's democracy in action. The people spoke. Their elected leaders voted. And their President is about to sign a bill into law that's consequential.
It's about accelerating hope and giving patients a fighting chance. The law invests $100 million annually for the next 5 years to do three important things:
First, it directs the Department of Health and Human Services to issue grants that support research on the access to promising new therapies for patients who don't make it into clinical trials. This means hope for patients who would otherwise have no access to treatments that could possible work for them.
Second, it establishes a first-of-its-kind public-private partnership led by the National Institutes of Health and the Food and Drug Administration—the FDA—to work with academia and nonprofits and the private sector to speed the development and evaluation of therapies for ALS and other neurodegenerative diseases.
And third, it creates a giant program at the FDA to develop new ways to prevent, diagnose, treat, and cure ALS and other neurodegenerative diseases. This bill really matters.
You know—you all know—ALS robs patients and families of so much. The immense physical, emotional, and financial toll. The loss of dignity and the loss of time.
For too long, there have been no survivors of ALS. But this bill could get us closer to changing that. To Brian and Sandra, to the patients and caregivers who built and led this movement: Thank you, thank you, thank you.
And know this: There are countless people who, even if they haven't experienced ALS, they've experienced some other cruel twist of fate. They see you, and you give them hope as well.
I see on the screen a fellow who used to work for my son Beau and whose mom is leader at the University of Delaware, in physical therapy, and whose dad died of ALS. Alex Mackler.
You know, the fact is, Alex, you—for me and my family, when you worked for Beau and then worked for us, we experienced watching our son battle cancer and go through the process so many of you have experienced. And you gave us hope. Getting the news, trying to find hope, knowing that the time would come.
But as hard as it is, we found a way forward, by finding purpose from the pain and by finding strength from others like you. One of the reasons I ran for President was to end cancer as we know it, just as we can end ALS as we know it and so many other diseases.
The Defense Department has something called the Defense Advanced Research Agency—DARPA—that advances cutting-edge research to protect our national security and that's led to things like GPS and the modern Internet.
In my budget, as President, I'm calling for the creation of the Advanced Research Projects Agency for Health—ARPA-H—that would advance breakthroughs in how we detect, treat, and cure cancer, diabetes, Alzheimer's, and neurological—other neurological diseases.
It's about showing the American people that, as a country, we can come together—Democrats, Republicans, independents—and do big things because we have the best researchers in the world; that our democracy can deliver.
And there's nothing beyond our capacity when we do it together as the United States of America.
I believe this bill is an example of that truth. And I'm honored to sign the Accelerating Access to Critical Therapies for ALS law—Act—excuse me—into law right now.
May God bless the patients and their families and caregivers and all of you on the screen who have dealt with this disease in so many ways. You're amazing. You're truly amazing. God bless you all.
And I'm going to go over and sign this legislation. Thank you.
H.R. 3537: Accelerating Access to Critical Therapies for ALS Act. God willing, we're going to make real progress. Again, thank you all.
[The President signed the bill.]
And, God willing, have a happy holiday. I wish I could see you all in person and thank you.
Participant. Thank you. Thank you, Mr. President.
The President. Thank you, thank you, thank you.
Participants. Bravo! Thank you, Mr. President. Thank you.
NOTE: The President spoke at 3:32 p.m. in the South Court Auditorium of the Dwight D. Eisenhower Executive Office Building. In his remarks, he referred to former Democratic Party political director Brian Wallach, and his wife Sandra Abrevaya; Dan Tate, Jr., founding partner,; Forbes Tate Partners; New York city resident Mayuri Saxena; Sierraville, CA, resident Sandy Morris; Deb Paust and Christa Thompson, cochairs of the legislative affairs community team, I Am ALS; and Lynn Snyder-Mackler, professor, University of Delaware, and her son Alex. H.R. 3537, approved November 23, was assigned Public Law No. 117-79.
* White House correction.
Joseph R. Biden, Remarks on Signing the Accelerating Access to Critical Therapies for ALS Act Online by Gerhard Peters and John T. Woolley, The American Presidency Project https://www.presidency.ucsb.edu/node/353920