Congress can give those with ALS a fighting chance
I lost my husband to
ALS. Soon, we’ll lose my father- in- law, too. I’m telling their stories because it doesn’t have to be like this for families who are just now receiving this terrible diagnosis.
ALS is a unique disease that deserves a unique approach, to give the people dying from it a chance at life. For the first time in the 150- year history of this disease, there are drugs in clinical trials showing promising impacts. For the first time, there is hope for years or decades more of walking, talking, working, breathing, loving and living, for people who today have only a death sentence. But Congress has to act in order to make this hope possible.
The course of ALS is fast and relentless. Many people with ALS have only two to five years, all the while losing the ability to walk, then write, then speak, then eat, then breathe. Most people with
ALS are not even eligible for clinical trials, and they literally do not have the time to wait the years that it will take for these drugs to be fully approved. They have nothing to lose, and deserve the chance to try promising new drugs. They cannot do that without the help of Congress, which is now considering a bill called Act for ALS, which would give the FDA the ability to extend access to new therapies to tens of thousands of Americans with ALS, and in doing so contribute to the advancement of ALS research. I know how relentless ALS is, and how little time people with ALS have, because it’s happened to our family twice. In 2008, my husband, Francisco Soto, was 37 years old and in great health, when he began to feel a twitching in his body that wouldn’t go away. When he was diagnosed with ALS, he told me that he wished it were a brain tumor instead, because at least he would have had a fighting chance.
Determined to enjoy the little time he had left, Francisco decided to go tubing with his friends. But because ALS had already taken his strength, Francisco drowned in the river that day. A decade later, Francisco’s father Hector — my father- in- law — retired in Florida after a lifelong career teaching fifth grade. But Hector’s zest for teaching remained, and he returned to the classroom and the kids he loved. That’s when he realized he was having difficulty speaking to his students. Hector soon received the same news that had devastated his son a decade earlier: He too has ALS.
Eventually, Hector lost his voice entirely. He is now in hospice care, unable to move any part of his body. He can’t even smile; ALS has taken even that small pleasure. All he can do is blink, so that’s what he does: He blinks to say I love you.
Our family legacy is one of loss and heartbreak from this insidious disease. Francisco’s and Hector’s diagnoses came without any hope for a cure, or even a delay, to ALS’ relentless progression. But Act for ALS, which passed the U. S. House of Representatives on Dec. 8, could change that — not for my family, but for so many families like ours who are seeing their loved ones slip away. This includes thousands of veterans who have a two- to ten- times elevated risk of ALS due to their service to our country, with 1,055 more veterans diagnosed with ALS each year, according to according to a VA report. These soldiers deserve our country’s support, not just on the battlefield but now, when they are facing a mortal injury connected to their service.
ACT for ALS is one of the most highly supported, bipartisan House bills in the last 50 years, with 76% of House members as co- sponsors. In the Senate, 58 senators — a bipartisan majority — are now publicly supporting the bill. Hector’s Florida Senators — both of whom have run on records of supporting families and veterans — still have time to join 21 Florida House members in co- sponsoring ACT for ALS and helping it move quickly through the Senate. I know it is Hector’s wish for Christmas this year to see ACT for ALS pass, so he can have the peace of mind that future generations — including his own grandchildren — will have a fighting chance against this dreadful disease. I hope senators Rubio and Scott will join this bipartisan chorus of lawmakers in giving the best Christmas gift imaginable — hope — to thousands of Florida families.
Amy Soto lives in Louisiana with her three children. Her father- inlaw, Hector Soto, lives in Pompano Beach with his wife and stepson, with his daughter and two sons nearby.