Our 2020 Congressional Written Testimony
Yesterday, a year after initially testifying before Congress, I submitted written testimony to the House of Representatives. Read it below.
If not for COVID-19 I would have gotten on a flight to Washington, DC to share this message on behalf of the tens of thousands of ALS patients, loved ones, and advocates to members of Congress in person. Today, my voice is weaker and more strained, my walking halting and dependent on a cane, but my spirit remains unbroken because of each and every one of you.
Co-Founder, I AM ALS
House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies
FY 2021 Public Witness Testimony for the Record
Monday, March 23, 2020
Madam Chairwoman DeLauro, Ranking Member Cole, Members of the Committee, thank you for the opportunity to submit this written testimony today on behalf of the ALS community. My name is Brian Wallach and I am an ALS patient and co-founder, along with my wife Sandra, of I AM ALS.
Last year, I had the honor to appear in-person before this distinguished Subcommittee as an ALS patient, father, husband and son. At the end of my testimony, Madam Chairwoman you said to me, “we will work with you. We want you to see your daughters graduate from kindergarten and beyond and I promise you that we will fight for your survival and for the survival of the millions of others who find themselves in the same situation. Science and research have the power to unlock discoveries for cure[s]. We can’t guarantee it, we can’t put a timeframe on it, but what we can do is make a very very serious investment making sure that we can unlock the mysteries of ALS.”
I write today on behalf of a community of tens of thousands of ALS patients, loved ones and advocates to thank you and your colleagues on the Appropriations Committee for keeping your word. Your and this Committee’s efforts led to the doubling of the Department of Defense (DOD) ALS Research Program (ALSRP) funding (from $10 to $20 million) and created urgency at the National Institutes of Health (NIH) to coordinate and report publicly on its ALS research priorities.
Why does this matter? Two reasons. First, this increased funding enabled DOD to announce additional funding opportunities in FY20 meaning that more research with the potential to rewrite the ALS fight can begin now. Moreover, the additional funding allowed DOD to expedite and enhance the work being done on four promising new ALS drug candidates that have gained industry support. Said differently, in just a few months this funding increase has had direct, immediate and tangible consequences. NIH, for its part, spent $22 million more on ALS research in 2019 than it did in 2018 and engaged directly and openly with the ALS community about how to prioritize research aims and collaborate to make urgent research progress. This is what you made possible.
Second, your actions–the fact that you saw us, heard us and supported us–helped galvanize the entire fight against ALS. Since my testimony last year, Massachusetts General Hospital announced a ground-breaking new trial design which will allow for the expedited testing of multiple drugs at once, FDA released a long-awaited ALS clinical trial guidance document, Steve Gleason became the first patient advocate ever to receive the Congressional Medal of Honor and with your help alongside many of your colleagues, patient advocates built-from-scratch a Congressional ALS Caucus with more than 150 House and Senate members. Hope is taking action in the face of uncertainty though you know not who specifically your actions will impact. Your decision to act created hope.
Madam Chairwoman, while I write to thank you, I also write to implore you to make these actions just the first on our path to ending ALS. ALS is a relentless disease. Every 5 minutes someone in the world is diagnosed with ALS. It afflicts every age, gender, race and nationality. When one is told they have ALS, they are thrown into a dystopian existence where they often look fine but are told they are dying quickly. They are told that there is nothing that can be done to avoid a swift and painful death where they will become a prisoner in their own bodies, and are often left on their own to uncover information about what ALS is or what they should do to fight. It is, in many ways not unlike the experience all Americans–and, indeed, the world–have gone through with COVID-19: feelings of helplessness, hopelessness, isolation and fear. While, unlike COVID-19, ALS is not contagious, it has been around for 150 years and left millions dead.
We can change all this. Madam Chairwoman, in the year since I appeared before this Committee ALS has ravaged my body. My voice is weaker and more strained, my walking halting and dependent on a cane. I’ve fallen multiple times and received 13 staples in the back of my head. But I am one of the lucky ones as I’m still alive. Nearly 1 in 3 patients diagnosed the same day as me are dead. While my body is failing, my spirit remains unbroken. Indeed, in many ways it is stronger than when I appeared before you last. It is stronger because in the last 5 years we have made more progress than the previous 145 years combined, changing the quest to cure ALS from a question of if to when. And I intend to be here when the answer to when is now.
As a community we will continue to push the FDA to move promising therapies through the pipeline and to patients faster than ever before to benefit patients living today with ALS. Indeed, in February, I hand delivered a letter to FDA Commissioner Stephen Hahn signed by 15,000 people that I have attached to this written testimony which stressed for the agency the need to create real pathways for those alive today to access promising therapeutics (Click here to read that letter). We will continue to work with drug companies to develop patient-centric trials that ensure every person who sacrifices as part of a trial has access to the investigational treatment if he or she wants it. We will build patient navigation programs to support patients and their families through every step of this fight so no one ever has to fight this terrible disease alone. We will fight for our veterans who are twice as likely to be diagnosed with ALS–some of whom have written a letter supporting my testimony that I have also attached (Click here to read that letter). And we will mobilize to save our lives and those who will walk in our shoes next.
We cannot win this fight on our own: we need you, the members of this Committee and this Congress to act boldly where so many others have kicked the can down the road. We need a bold statement that our leaders are committed to ending ALS and committed to using the breakthroughs in our fight to power breakthroughs for Alzheimer’s, Parkinson’s Disease, Multiple Sclerosis and beyond. Ask any scientist and they will tell you that these diseases are linked and thus so are their cures. They will also tell you that ALS, as the fastest progressing of these diseases, is horrible for patients but a gift to researchers because you can ascertain efficacy of potential treatments quickly. We are the tip of a spear that will impact tens of millions with neurodegenerative diseases in the coming years.
To make real the promise of hope that you bravely created last year we are asking you to do two things. First, we ask you and your colleagues to again support doubling the funding of the DOD ALSRP to $40 million in fiscal year 2021. Second, we ask you to provide no less than $20 million over the fiscal year 2019 level for NIH ALS research. What will this funding do? It will allow the ALSRP to move ever-closer to funding early-stage clinical trials, bridging the so-called “valley of death” between fundamental research and commercialization, and catapulting forward promising treatments which will in turn bring in private investment and flood the treatment development pipeline. And it will allow NIH to fund dozens of additional scientists searching for that breakthrough biomarker and pathway that makes ALS the next success story, like HIV.
Everything is impossible until it isn’t. When I was diagnosed with ALS 2.5 years ago I was given six months to live, told to go home and get my affairs in order. Instead, I am very much alive, typed every word of this submission and but for COVID-19 would be sitting in front of you tomorrow. I am living impossible. I want to be a part of the last generation that has to go through this. You can make this real. I firmly intend to see you next year to report out on what we did with the additional funding and to thank you, Madam Chairwoman, and all the Members of the Appropriations Committee for, again, keeping your word.
Thank you for having the courage to stand with us to reimagine and win the fight against ALS and to make real Cures for All.