The Accelerating Access to Critical Therapies for ALS Act puts $100 million a year toward grant programs that will expand access of experimental treatments to people who don't otherwise qualify for clinical trials.
Not only did Dr. Richard Bedlack, a neurologist and director of the Duke ALS Clinic push for the bill that passed unanimously in the Senate, but he runs the Clinical Research Learning Institute, an advocacy training program that's helped patients and families advocate for this and other bills like it.
Bedlack describes ALS as rapidly progressing and massively disabling, saying people with ALS, on average, live three to five years from their first symptoms.
One of Bedlack's patients, Shelly Hoover, is an exception: the Navy veteran was diagnosed with ALS in 2013.
Bedlack said because companies that fund clinical trials for ALS treatments are typically small pharmaceutical companies with limited capital, they are looking for the healthiest people in the earliest stages of the disease who are most likely to show improvement over the course of a six month study. Hoover, like most ALS patients, doesn't qualify for most trials.
"Many people with these diseases realizing that they can't be fixed want access to the products in those trials even though they can't participate in the trials themselves," said Bedlack.
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Hoover, who teamed up with IamALS.org to advocate for passage of the Act for ALS, spent the last 18 months sending hundreds of emails to senators and representatives and participating in dozens of Zoom calls, educating lawmakers on ALS and the legislation.
"We are a community of severely disabled people who die quickly and we have no access to treatments that work," she said. "With the Act for ALS we finally have been heard."
Hoover could be seen on screen right next to Pres. Biden during the virtual bill signing ceremony.
“We finally have been heard.” -Shelly Hoover was diagnosed with ALS in 2013 and has spent the last 18 months advocating for expanded access to experimental treatments. Today, she attended the virtual ceremony where @POTUS signed the Act for ALS into law. @ABC11_WTVD pic.twitter.com/VnFSUd4BRS— Andrea Blanford (@AndreaABC11) December 23, 2021
"What it does is it gives people like Shelly more options and more hope," said Bedlack. "That's just so important. Put yourself in the shoes of someone who's been diagnosed with this or has a family member with it, I mean of course the first thing you want is a cure but if that doesn't exist, then you want options and you want hope and that's where this bill is going to make a big difference for us."
Andrea Lytle Peet, the president and founder of Team Drea Foundation, sent a statement to ABC11 ahead of the bill signing, referring to the law as a game changer for her and many others like her:
"ALS is such a devastating disease for all the families it touches, which makes this legislation a huge win for our community. We are getting so close to finding real treatments thanks to the Ice Bucket Challenge - and Act for ALS will keep that momentum going.
For me personally, I don't qualify for many clinical trials anymore but I could get access to investigational drugs.
Basically it is a game changer, and brings so much hope to patients and their families in what has been such a dark and hopeless disease."