Remarks by President Biden during the signing of Law HR 3537, “Accelerating Access to Critical Therapies for ALS Act”


Auditorium of the South Court
Eisenhower executive office building

3:32 p.m. EST

THE PRESIDENT: Good morning. As Christmas and New Years dawn, the bill I am about to enact truly represents the spirit of the season, in my opinion – a season of hope and light, of kindness and grace. , and the power of unity among everyday Americans. do 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 muscles, making it difficult to lift a spoon to eat or take a step to walk. It leads to paralysis and ultimately leads to death within an average of two to five years after diagnosis.

Since Lou Gehrig, the New York Yankees Hall of Fame, announced his retirement from baseball in 1939 due to illness, no cure has been found. Treatments are still limited and the results are still the same. It has been 82 years with hundreds of thousands of lives lost.

But today we are finally closer than ever to new treatments and, hopefully, God willing, to a cure. And it is thanks to the movement led by patients and caregivers and members of Congress from both parties, many of whom are joining us today virtually. Patients like Brian Wallach and his wife, Sandra. They met in 2008 while 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, loved by their 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 whole world was before them – maybe a race for an elective home office in Illinois – at home in Illinois, or working for that White House; raising two beautiful girls – until everything changes: coughs, cramps, tics.

A few days after welcoming baby Naomi, Brian was diagnosed with ALS at the age of 36 and had six months to live. It was four years ago. And Brian and Sandra are joining us virtually today – I say hello to you both – because they turned their pain into a goal.

They spoke 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 fueled by hope and change as well.

They were daring. They were told it would be difficult, but they were – stayed bold. And there would be too many obstacles, they were told. But because of the nature of the disease, there wouldn’t be enough time, if – they were told, I guess.

But they never gave up. They launched “I AM ALS” to give a face to the movement, powered by the people. They have partnered with patients like Dan Tate, who has long championed these issues 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 the SLA Association and the Muscular Dystrophy Association who have helped organize the community. – a community that has written countless letters and called countless meetings with members of Congress and their staff, many of whom have 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.

Thanks to the members of the House, where there were 331 co-sponsors, this bill, and it was passed by 423 to 3, including the main sponsors of the bill: Mike Quigley, Democrat of Illinois ; Jeff Fortenberry, Republican of Nebraska.

And like many others: Anna Eshoo, Democrat of California; Brett Guthrie, Republican – Kentucky; Jan Sendowsky [Schakowsky] of – Democrat of Illinois; Cathy McMorris, Republican from Washington State; Frank Pallone, Democrat of New Jersey; and members of the House ALS Caucus.

If you’re wondering why I’m saying whether they’re Democrats or Republicans, to take stock: when we act together, we get things done. And it’s totally – totally, totally a bipartisan effort.

And from the United States Senate, there were 64 co-sponsors and it was passed unanimously, led by Chris Coons of Delaware; Lisa Murkowski from Alaska; Patty Murray from Washington State; Richard Burr of North Carolina; Dick Durbin and Tammy Duckworth, Democrats from Illinois.

And we are joined today by the Secretary of Health and Social Services, Xavier Becerra, whose department will play an essential role.

in law enforcement.

People is democracy in action. People have spoken. Their elected leaders voted. And their president is about to sign a bill that has consequences.

It’s about accelerating hope and giving patients a chance to fight back.

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

First, it orders the Department of Health and Human Services to provide grants that support research and access to promising new therapies for patients not participating in clinical trials.

It means hope for patients who would otherwise not have access to treatments that could possibly work for them.

Second, it establishes a one-of-a-kind public-private partnership led by the National Institutes of Health and the Food and Drug Administration – the FDA – to work with universities, nonprofits, and the private sector to accelerate the development and evaluation of therapies for ALS and other neurodegenerative diseases.

And third, he creates a grant program for 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 it – ALS steals so much from patients and families. The immense physical, emotional and financial toll. The loss of dignity and the waste of time.

For too long, there have been no survivors of ALS. But this bill could bring 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 though they haven’t experienced ALS, have suffered yet another cruel stroke of fate. They see you and you also give them hope.

I see on screen a man who worked for my son, Beau, whose mother is a leader at the University of Delaware in physiotherapy, and whose father died of ALS. Alex Mackler.

You know the point is, Alex, you – for me and my family, when you worked for Beau and then for us, we saw our so- – our son battling cancer and going through the process that a lot of you have lived. And you gave us hope. Get the news, try to find hope, knowing the time would come.

But as difficult as it may be, we’ve found a way forward – finding purpose in pain and finding strength in others like you.

One of the reasons I ran for President was to end cancer as we know it, just like we can end ALS as we know it and so many other diseases.

The Department of Defense has something called the Defense Advanced Research Agency – DARPA – which advances cutting edge research to protect our national security and has led to things like GPS and the modern internet.

In my budget, as president, I call for the creation of the Agency for Advanced Research Projects in Health – ARPA-H – which would advance breakthroughs in the way we detect, treat and cure cancer. , diabetes, Alzheimer’s disease and neurological diseases. – other neurological diseases.

It’s about showing the American people that as a country we can come together – Democrats, Republicans, Independents – and do great things because we have the best researchers in the world; that our democracy can offer.

And there is nothing beyond our capabilities when we do it together as the United States of America.

I believe this bill is an exa … an example of this truth. And I’m honored to sign the Accelerating Access to Critical Therapies for ALS Act – act – excuse me – into law right now.

May God bless the patients, their families and caregivers and all of you onscreen who have faced this disease in so many ways. You’re amazing. You are truly amazing. God bless you all.

And I will go and sign this law. Thank you.

HR 3537: Accelerating Access to Essential Therapies for ALS. God willing, we’re going to make real progress.

Once again, thank you all.

(The invoice is signed.)

And, God willing, have a good vacation. I wish I could see you all in person and thank you.

PARTICIPANT: Thank you, Mr. President.

THE PRESIDENT: Thank you, thank you, thank you.

3:42 PM EST


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