Transcript - Remarks: Joe Biden Signs a Bill to Benefit ALS Therapies and Research - December 23, 2021 | Factba.se

Joe Biden

00:00:00 - 00:00:23 ()

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.

Joe Biden

00:00:23 - 00:00:47 ()

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 two to five years of diagnosis.

Joe Biden

00:00:47 - 00:01:10 ()

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.

Joe Biden

00:01:10 - 00:01:50 ()

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 Obi- -- the Obama-Biden White House, driven by public service, beloved by colleagues, anchored by the love of family.

Joe Biden

00:01:50 - 00:02:16 ()

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.

Joe Biden

00:02:16 - 00:02:36 ()

Within days of welcoming baby Naomi, Brian was diagnosed with ALS at the age of 36 and given six months to live. That was four years ago. And Brian and Sandra are joining us today virtually -- I say hi to you both -- because they turned their pain into purpose.

Joe Biden

00:02:36 - 00:02:56 ()

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.

Joe Biden

00:02:56 - 00:03:12 ()

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.

Joe Biden

00:03:12 - 00:03:33 ()

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.

Joe Biden

00:03:33 - 00:04:09 ()

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.

Joe Biden

00:04:09 - 00:04:18 ()

I want to thank House Speaker Pelosi, Minority Leader McCarthy, Senate Majority Leader Schumer, and Minority Leader McConnell.

Joe Biden

00:04:18 - 00:04:39 ()

Thank you to the members of the House, where it had 331 co-sponsors, 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.

Joe Biden

00:04:39 - 00:04:58 ()

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.

Joe Biden

00:04:58 - 00:05:10 ()

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.

Joe Biden

00:05:10 - 00:05:28 ()

And from the United States Senate, there were 64 co-sponsors 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.

Joe Biden

00:05:28 - 00:05:35 ()

And we're joined today by Secretary of Health and Human Service, Xavier Becerra, whose department will play a vital role

Joe Biden

00:05:35 - 00:05:37 ()

in implementing the law.

Joe Biden

00:05:37 - 00:05:48 ()

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.

Joe Biden

00:05:48 - 00:05:55 ()

It's about accelerating hope and giving patients a fighting chance.

Joe Biden

00:05:55 - 00:06:01 ()

The law invests $100 million annually for the next five years to do three important things:

Joe Biden

00:06:01 - 00:06:13 ()

First, it directs the Department of Health and Human Services to issue grants that support research on -- and the access to promising new therapies for patients who don't make it into clinical trials.

Joe Biden

00:06:13 - 00:06:20 ()

This means hope for patients who would otherwise have no access to treatments that could possible work for them.

Joe Biden

00:06:20 - 00:06:40 ()

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.

Joe Biden

00:06:40 - 00:06:44 ()

And third, it creates a grant program at the FDA to develop

Joe Biden

00:06:44 - 00:06:51 ()

new ways to prevent, diagnose, treat, and cure ALS and other neurodegenerative diseases.

Joe Biden

00:06:51 - 00:06:54 ()

This bill really matters.

Joe Biden

00:06:54 - 00:07:06 ()

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.

Joe Biden

00:07:06 - 00:07:12 ()

For too long, there have been no survivors of ALS. But this bill could get us closer to changing that.

Joe Biden

00:07:12 - 00:07:22 ()

To Brian and Sandra, to the patients and caregivers who built and led this movement: Thank you, thank you, thank you.

Joe Biden

00:07:22 - 00:07:35 ()

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.

Joe Biden

00:07:35 - 00:07:49 ()

I see on the screen a fellow who used to work for my son, Beau, and whose mom is a leader at the University of Delaware, in physical therapy, and whose dad died of ALS. Alex Mackler.

Joe Biden

00:07:49 - 00:08:12 ()

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 so- -- 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.

Joe Biden

00:08:12 - 00:08:21 ()

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.

Joe Biden

00:08:21 - 00:08:30 ()

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.

Joe Biden

00:08:30 - 00:08:46 ()

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.

Joe Biden

00:08:46 - 00:09:03 ()

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 disea- -- other neurological diseases.

Joe Biden

00:09:03 - 00:09:18 ()

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.

Joe Biden

00:09:18 - 00:09:25 ()

And there's nothing beyond our capacity when we do it together as the United States of America.

Joe Biden

00:09:25 - 00:09:38 ()

I believe this bill is an exa- -- 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.

Joe Biden

00:09:38 - 00:09:54 ()

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.

Joe Biden

00:09:54 - 00:10:17 ()

And I'm going to go over and sign this legislation. Thank you.

Joe Biden

00:10:17 - 00:10:46 ()

H.R. 3537: Accelerating Access to Critical Therapies for ALS Act. God willing, we're going to make real progress.

Joe Biden

00:10:46 - 00:10:49 ()

Again, thank you all.

Note

00:10:49 - 00:10:49 ()

[The bill is signed]

Joe Biden

00:10:49 - 00:10:56 ()

And, God willing, have a happy holiday. I wish I could see you all in person and thank you. [Audience member responds: "Thank you, Mr. President."]

Joe Biden

00:10:56 - 00:10:59 ()

Thank you, thank you, thank you.