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ALS Disability Insurance Access Act

Floor Speech

Date: Dec. 2, 2020
Location: Washington, DC

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Mr. BRAUN. Mr. President, today I rise in proud support of legislation that will break down barriers for those with medically determined ALS.

ALS is a progressive and fatal neurodegenerative disease that affects the motor nerve cells in the brain and spinal cord, gradually robbing patients of the ability to eat, speak, and eventually breathe.

Currently, there are no meaningful treatments, no known cause, and no cure. But today, we have reason to hope.

Since 2016, Senators Whitehouse and Cotton have championed the ALS Disability Insurance Access Act. Thanks to their tireless efforts, we are about to give ALS patients and their families more timely access to their Social Security disability benefits. No longer will these patients have to wait 5 months to access benefits they have earned.

Passing this act will help alleviate some of the financial burdens that accompany an ALS diagnosis and will allow patients and their families to focus their precious time where it needs to be--on their loved ones and their battle against the disease.

ALS is not a rare disease. More than 5,600 individuals in the United States are diagnosed each year, meaning 15 Americans are diagnosed each day. Not only is ALS common, it is also extremely personal to many in this Chamber, and it is personal to me.

My cousin Anne Seitz lost her battle with ALS on Thanksgiving Day 10 years ago. Her husband Terry Seitz currently resides in my hometown and is my State director of outreach.

My budget and appropriations staffer, Robert Ordway, and his sister Jennifer lost their father, Douglas Raymond Ordway, to the disease.

Kathy Laesch, a member of my Indianapolis team, has a son Brian who was diagnosed with ALS this summer. Brian, who also lost his father, has fortunately been enrolled in a clinical trial. We are all praying for his treatments to be effective. In the network of people I have come to know back home and here in the Senate, it shows you just how many lives are affected by it, and there are countless patients it has affected in the Hoosier State.

I would like to personally thank Tina Kaetzel, the executive director of the Indiana ALS Association, for bringing this bill to the attention of our office.

I would also like to give a heartfelt thank you to Corey Polen, of Brownsburg, IN, for his passionate and unwavering advocacy in support of the bill. Corey has become a friend to our office and has also been a champion of legislation I introduced, the Promising Pathway Act, which would provide new FDA authority to more rapidly approve drugs specifically for diseases like this.

I would be remiss if I did not thank I AM ALS, especially Brian Wallach, Danielle Carnival, and Dan Tate, for their unyielding devotion to this and to fixing our broken healthcare system.

Today, we come one step closer to accomplishing this pursuit. It has been a great honor to cofound the first-ever Senate ALS Caucus with my colleague across the aisle, Senator Chris Coons, of Delaware. The passage of the ALS Disability Insurance Access Act has been a priority for this caucus since its inception about a year ago. We readily acknowledge that the bill's passage is long overdue and that there is much more work to be done. We look forward to rolling up our sleeves and coming together to advance policies in the future that will continue to improve the quality of life for ALS patients.

In doing so, we celebrate ALS patients--those we have lost, those who are currently fighting this dreadful disease, and those whose journeys have not yet begun. It is a disease that does not have the luxury of a large community from which to raise awareness and fight for reforms. ALS has no survivor community. It is up to us, then, to speak up for those who can no longer speak and to stand up for those who can no longer stand.

To those whom we have lost to ALS and to those currently battling this disease--Anne Seitz, Douglas Raymond Ordway, Brian Laesch, Corey Polen, Brian Wallach, Dan Tate, and so many others impacted by ALS--we here in the U.S. Senate are your advocates.

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