We were delighted to see this interview of Genzyme’s CEO, David Meeker, about Genzyme’s philosophy and approach to working with patient advocates. The interview was conducted by The Massachusetts Biotechnology Council (MassBio), a not-for-profit organization that represents the biotechnology industry in Massachusetts.
The article was posted in conjunction with the 1st ever MassBio Patient Advocacy Summit that brought industry leaders together with patient advocates to examine ways in which life sciences companies can more fully incorporate the patient voice into the work they do—not just approaching regulatory applications or at commercialization, but throughout the drug development cycle. The full text of the article appears below as well as on the Massbio website.
Q & A with Dr. David Meeker, President and Chief Executive Officer of Genzyme
Q: Can you tell us a little bit about Genzyme's philosophy and approach to working with patients? How has it changed over the years?
A: Our core mission and business model is based on addressing unmet needs on behalf of patients living with rare and debilitating diseases. Our story as a company is Brian's story of facing Gaucher Disease as a child. When we first met Brian and his family, he was a young child facing a diagnosis for a progressive, debilitating disease for which there was no treatment. More than two decades later, Brian is a married father of four, not defined by his disease and living a full life. Or Dexter's story, having to stop playing with his friends in the yard because of the burning sensation in his hands from Fabry disease. Dexter is now a teenager receiving treatment, and continues to serve as a source of motivation for the team at Genzyme that manufactures his therapy.
Our patient advocacy team has been in place for almost 15 years. Their sole mission is to support patient advocates and communities to be more effective while helping to make a meaningful difference in patients' lives. That really summarizes our approach — it's been how we conduct our business from the earliest of days and is just as critical now as it was then. The external landscape has become more complex, with increased scrutiny and regulations, but the importance of mutually beneficial, transparent relationships with patient advocates has not changed in our minds.
Q: The majority of MassBio member companies are small and early-stage. As they consider where to put their limited resources, what's the business case for patient advocacy?
A: It's never “too early” to invest in patient advocacy. In general, many companies still struggle to understand what having an advocacy focus looks like in practice. It is less about the dollars and more about the time investment of people building relationships with advocates and soliciting feedback. We don't question whether we would invest in relationships with physicians or payors so why should we think any differently about investing in patient advocacy? Patients are the ultimate customer, the ones who know their disease better than anyone, and the relationships with advocacy groups have critical impact all along the drug development pathway.
Q: How do you see the role of patients in drug discovery, development and commercialization cycles shifting in the future?
A: The influence patients have has dramatically changed in the last 5-10 years, and there’s no reason to think this will not continue to increase. I believe it will become commonplace to have patients with a seat at the table throughout the process of developing treatments, engaging in clinical development, and play a greater role in access for therapies — and I believe it SHOULD be commonplace.
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