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BIO President & CEO John F. Crowley explored the meaning of “innovation, access, and advocacy” at the American Cancer Society Cancer Action Network breakfast yesterday—we have a recap, plus how caregivers are helping researchers find ALS biomarkers. (598 words, 2 minutes, 59 seconds) |
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‘Innovation, access, and advocacy’ |
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BIO President & CEO John F. Crowley spoke of “innovation, access, and advocacy” at yesterday’s keynote at the American Cancer Society Cancer Action Network (ACS CAN) 17th Annual Research & Health Equity Breakfast in Boston.
Innovation: “We describe it as a virtuous circle, and you put people living with these diseases … at the center and think about what it takes to make newer and better medicines,” he said.
What it takes: “It takes the NIH; it takes entrepreneurs,” he continued. “It takes the FDA; takes an entire international system; takes manufacturers, consultants, bankers, advisors, all of that. And even then, it’s one of the rarest things we can do in any industry: To go from an idea to a molecule, to a medicine that works as safe and effective in clinical studies, and to ultimately get it approved.”
Access “really means identifying and breaking down barriers, understanding why people don’t have access to these medicines,” he said. “Is it awareness? Is it health equity? Look at the enormous disparities and outcomes of people in communities of color and underprivileged areas.”
What Massachusetts is doing: State Rep. Meghan Kilcoyne (D-Worcester) proposed legislation that would increase coverage for biomarker testing. “So many cancers, with early intervention, can be effectively and highly successfully treated,” said Crowley.
Advocacy: Crowley told his story of launching a biotech that developed a treatment for the Pompe disease afflicting his children.
“I would ask everybody—everybody in our organization, everybody in our industry, and each of you—to think when you are going through the rigors of drug development that’s so darn hard,” Crowley said. “I’d ask you to think if you had that disease, if you had that cancer. Or you’re the mom or a dad of a child with that disease. What would you do?” |
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At yesterday’s ACS CAN 17th Annual Research & Health Equity Breakfast: BIO President & CEO John F. Crowley, third from right. Next to him, fourth from right, is Massachusetts State Rep. Meghan Kilcoyne (D-Worcester). |
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Accelerating ALS research with biomarkers and collaboration |
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Patients and caregivers are essential to the search for biomarkers for Amyotrophic Lateral Sclerosis (ALS), a fatal rare disease that slowly steals bodily functions, including breathing. Bio.News has more.
One patient’s story: After eight months of visiting doctors, “my husband was diagnosed with ALS in 2019. And we lost him the following year,” said Nadia Sethi, caregiver to her late husband and participant in the Biomarkers Working Group for the Accelerating Medicines Partnership for ALS (AMP ALS) at the Foundation for the National Institutes of Health (FNIH).
The AMP ALS, an outcome of the 2021 Act for ALS, is consolidating “extremely fragmented” research to assist with treatment and diagnosis. “Biomarkers are missing to identify patients early,” said Dr. Alessio Travaglia, FNIH Director of Translational Science, Neuroscience.
Why it matters: “We don’t really have a way to monitor how a patient is progressing or how they are responding to the treatment that they are being given in clinical trials,” said Dr. Travaglia.
Patients and caregivers help identify biomarkers: “We tend to notice things that happen on a day-to-day basis that somebody in the research space might not,” said Sethi. “Those are things where we can bring a perspective to kind of drive change.”
“People who progress very rapidly don’t often have time to advocate for ALS,” said Sethi. “My husband didn’t have the bandwidth to do that as he was going through it. And so there’s nobody here to incorporate his experience now except for me.”
Read the article at Bio.News. |
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President Biden’s Wednesday: At Camp David, prepping for tomorrow’s debate.
What’s Happening on Capitol Hill: The Energy & Commerce Subcommittee on Innovation, Data, and Commerce has planned a budget hearing with Commerce Secretary Gina Raimondo. The Ways & Means Health Subcommittee will hold a hearing, Improving Value-Based Care for Patients and Providers. |
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