Opinion editor's note: This article, part of our New Voices collection, was written by a first-time contributor to Star Tribune Opinion. For more information about our efforts to continually expand the range of views we publish, see startribune.com/opinion/newvoices.
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For those currently living with ALS and for the hundreds of passionate ALS advocates like me who were involved, President Joe Biden did his best Santa impression and delivered an incredible gift to us just in time for the holidays. On Dec. 23, he signed the Accelerating Access to Critical Therapies for ALS (ACT for ALS) bill into law, giving those fighting ALS some real hope for the first time in a long, long time.
ALS stands for amyotrophic lateral sclerosis and is often also referred to as Lou Gehrig's disease. ALS was first found in 1869 by French neurologist Jean-Martin Charcot, but it wasn't until 1939 that Lou Gehrig, New York Yankees first baseman, brought national and international attention to the disease when he received the diagnosis. ALS took the life of Gehrig on June 2, 1941, ending the career of one of the most beloved baseball players of all time. In the 80-plus years since, still no cure has been found and there are no effective treatments.
ALS causes progressive degeneration of the motor neurons in the brain and spinal cord, leading to death. The disease causes people to lose the ability to move, eat, speak and eventually breathe. It is a terminal disease, where patients diagnosed are told they should expect to live two to five years, although many die sooner. It is, essentially, the proverbial "death sentence."
At my husband's diagnosis in September 2018, I remember being devastated to hear the words "go home and get your affairs in order," thinking that was some kind of fictitious saying you only hear in the movies. Life would be great if no one ever had to hear that again, I thought.
Having become a widow at the age of 58 in May 2020, when this disease took my husband, I found healing in doing whatever I could to help others walking this terrible path. So I got involved.
Enter 2021: The ACT for ALS bill materialized due to a grassroots movement of ALS patients and advocates, along with support from organizations I Am ALS, the ALS Association and the Muscular Dystrophy Association. I, along with numerous others, joined the volunteer-based legislative committee of I Am ALS, and we spent the year having weekly Zoom meetings to organize our efforts.
Once the bill was created and it had two sponsors in both the House and the Senate, the job of the patients and advocates was to reach each and every Congress member to educate them on ALS and the dire need for this legislation, as well as to obtain as many cosponsors as possible.
Calls, e-mails, letters, Zoom and in-person meetings produced over 330 cosponsors in the House and over 50 in the Senate, making this bill the highest-cosponsored bill (out of thousands of bills) introduced in 2021's 117th Congress. Not a bad achievement for a grassroots effort. And it is worth noting that the bill passed by a vote of 423 to 3 in the House and unanimously in the Senate.
This legislation will establish:
- An expanded access grant program that funds research on, and provides access to, promising investigational treatments to people living with ALS who are not eligible for clinical trials. Less than 10% of people living with ALS ever have a chance for participation in a clinical trial.
- A Health and Human Services (HHS) public-private partnership for rare neurodegenerative diseases jointly led by the Food and Drug Administration (FDA) and the National Institutes of Health (NIH). This will be the first federal effort explicitly charged with speeding the development and approval of therapies for ALS and other rare neurodegenerative diseases.
- A rare-disease grant program at the FDA that will fund research on, and development of, interventions to prevent, diagnose, treat or cure ALS and other rare neurodegenerative diseases.
- A commitment from the federal government to fund $100 million per year for each of the next five years to achieve the above-stated objectives. Before this, there had never been a commitment of funds to ALS from the government greater than $40 million.
As one of the bill's sponsors, U.S. Rep. Mike Quigley, D-Ill., said, "ALS may rob people of their physical ability to speak. But make no mistake, this community has made themselves heard. It is their will that has brought us to today's vote. And where there's a will — there's a way."
For me, this process gave new meaning to a quote attributed to Margaret Mead: "Never doubt that a small group of thoughtful, committed citizens can change the world: Indeed, it is the only thing that ever has."
Lastly, Minnesota truly showed up for this bill by being the first state to get all eight House members and both Senators to agree to cosponsor. Yep, a clean sweep. It's appropriate to give a huge shoutout to Reps. Angie Craig, Tom Emmer, Michelle Fischbach, Jim Hagedorn, Betty McCollum, Ilhan Omar, Dean Phillips and Pete Stauber, and Sens. Amy Klobuchar and Tina Smith, for showing their compassion, making this state a leader for others to follow and demonstrating to all of us that politicians can work across the aisle. Minnesota nice? You betcha.
Lori Larson Heller lives in Minneapolis and is a passionate advocate for all things ALS. To learn more, visit www.givemn.org/jimheller/story.
