WASHINGTON — Brian Wallach spoke with his eyes.
The Illinois native and co-founder of I AM ALS has been living with ALS for eight years and can no longer use his voice. Instead, Wallach, 45, types with his eyes, then generates speech by applying artificial intelligence to old recordings of his voice.
He used that software on Wednesday during a hearing held by the House Committee on Energy and Commerce's Health Subcommittee to testify for a bill that would expand investigational therapies treating the disease.
“It is the single biggest investment in ALS research,” Wallach said, as his wife, caregiver, and co-founder, Sandra Abrevaya, gripped his hand.
“Rereauthorizing it is our best chance of finding a cure,” said Wallach, as his wife, caregiver, and co-founder Sandra Abrevaya gripped his hand.
The proposal, introduced in the House earlier this month by Rep. Mike Quigley, D-Ill., would reauthorize a 2021 law bill that authorizedallocated $100 million annually from 2022 to 2026 to study ALS and facilitate more investigational therapies for patients, who typically have a life expectancy of two to five years following diagnosis, said Sheri Strahl, President and CEO of ALS Network.
The measure has drawn broad, bipartisan support with 13 co-sponsors on either side of the aisle. Health Subcommittee Chair Rep. Morgan Griffith, R-Va., predicted a “strong vote” in its favor, he said Wednesday at a press briefing. That would move the bill out of committee and put it to the Senate.
“This is not Republican or Democrat. This is Congress doing its job together, which we can do on occasion,” Griffith told Medill News Service.
Health Subcommittee Chair Rep. Morgan Griffith, R-Va., speaks at an Apr. 15 hearing (Photo by Stephen Voss, courtesy of I AM ALS)
That would be welcome news for ALS patients, who are often restricted from traditional clinical trials, said Strahl. To participate, patients usually need to have a certain vital capacity and to have been diagnosed within the last two years.
“It takes a very long time for people to get diagnosed, the range is 11 months to 20 months,” Strahl said. “You only have four months to get your arms around the research landscape, find a clinical trial, get screened for a clinical trial, and participate.”
The bill would give those shut out of clinical trials access to investigational therapies, Strahl said. Sandra Abrevaya credits one such therapy with helping her husband live eight years past diagnosis.
“We've tried to take advantage of every opportunity we can, both with clinical trials and expanded access programs,” Abrevaya told Medill News Service. “We really do believe that Brian is alive today, in part, because we've leaned in to promising new treatments.”
The proposal would also fund and invest in a study researching the biomarkers of ALS that could allow quicker diagnosis across multiple degenerative diseases, including Parkinson’s, Alzheimer’s, and Huntington’s diseases.
The legislation’s broad applicability and many Congress members’ personal connections to these diseases propelled the legislation forward at what, for Congress, has been breakneck speed, Quigley said.
“It's so important to think of this as the way to get to all the neurodegenerative diseases,” Quigley told Medill News Service. “Some of the best bills get caught up for reasons that defy reason. Somehow, this caught lightning in a bottle.”
Zara Norman is a graduate student reporter covering health for Medill News Service.
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