The 2016 World Medical Innovation Forum hosted by Partners HealthCare highlighted emerging approaches for diagnosing, treating and managing cancer. On the final day of the conference, patient advocacy leaders discussed the role philanthropy plays in driving these innovations in cancer care.
The panel, “New Philanthropy: Patients Driving Innovation,” featured Founder and Executive Director of the PanMass Challenge, Billy Starr; the CEO of the Leukemia and Lymphoma Society Louis DeGennaro; and the President and CEO of Susan B. Komen for the Cure, Judy Salerno. These groups are comprised of the most important stakeholders in the ecosystem; the cancer patients themselves who understand the everyday reality of living with this disease.
Patients and their communities continue to be integral to cancer fundraising . In her introduction, the panel moderator and WBZ reporter Mallika Washington emphasized the need for philanthropy to supplement other sources of funding. “Patients are driving innovation. Why? Because government funding has not been enough,” she said.
The PanMass Challenge, for example, has become a cancer fundraising phenomenon that raises $46 million in additional research funding per year for the Dana Farber Cancer Institute. The PMC generates nearly 50% of the Jimmy Fund’s annual revenue and is its single largest contributor.
According to Billy Starr, the PMC’s success is largely driven by an enhanced sense of community and personal connection. “The reciprocity between communities, riders, and volunteers is something we don’t get every day at work,” he explains. “There is no stronger advocate for an event or a hospital than a layperson talking to their family and friends about how they’ve been empowered and their personal experience.”
25 years ago the Leukemia and Lymphoma Society created an endurance training program called Team in Training which has trained 600,000 athletes and raised well over $1 billion, all of which they put to use as quickly as possible. “We don’t hold onto the dollars, our goal is to turn those dollars around to the mission of the organization as early as possible,” DeGennaro explains. “At the beginning of every year we start that process over again.”
In addition to fundraising, patient advocacy groups have begun to redefine their roles; they are dedicated to helping patients fight for regulatory approval and voice opinions about which clinical projects researchers should pursue.“It’s their lives,” said Salerno. “They are all survivors, and so we are very interested in thinking with each dollar.”
DeGennaro has noticed an increased interest in involving patients in innovation. “The FDA is interested in incorporating patient preferences into the drug discovery process. They’ve opened the doors to us,” he said. “We brought 14 acute myeloid caregivers and patients to the FDA oncology leadership, who gave us a half a day of their time in dialogue with the patients, to hear their concerns and preferences. I thought this was a wonderful opportunity to have the regulatory engage with patients in that kind of dialogue.”
Robert Schultz has an MBA in Information Systems from University of Massachusetts-Boston and a BS in International Business from Northeastern University, where he served as Business Manager for the university’s largest student publication, The Northeastern News. Schultz is an experienced healthcare technology startup enthusiast who was involved with the patient monitoring company Aware Engineering through the MassBio MassCONNECT program.
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