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Patient Stakeholder Groups Rethink Models for Addressing Unmet Needs

Earlier this month at the BioPharm America conference, the industry tipped its hat to increasingly powerful patient groups with their panel “Investments by Patient Groups and Other Stakeholders.”

The panel discussed both the best practices and challenges associated with the shifting stakeholder landscape. The panel was moderated by Melissa Stevens, the Executive Director of FasterCures, a company which aims to improve the medical research system.

20 years ago, there were fewer accelerators and not so many tech transfer offices. Since then, there have been a variety of drivers and market conditions that have allowed for patient advocacy organizations to play a bigger role in research and development.

“There are many factors that are driving patient engagement. Patients have a lot of information about their own health, and they are interested in sharing and working together” commented Irene Abrams, Senior Director of the Technology Innovation and Development Office at Boston Children’s Hospital. “We cannot ignore the impact of social media, organizing and finding other people who share the same disease, and the success of patient advocacy groups.”

Armed with increasingly democratized knowledge about their own health, patients are becoming integral in efforts to drive progress. “Nobody is in more of a hurry than the patients. They want to get it done faster and quicker, and if you add it all together, these educated, smart patient groups have a model to move it forward” said Steven Young, the President of the Addario Lung Cancer Medical Institute, which has a sister organization Addario Research Foundation.

Nevertheless, when we look at investment in the United States, philanthropy only accounts for 3 percent. Still, this investment can be used in strategic ways and represents an opportunity for patient groups to fund drug development.

“We have a tremendous amount of philanthropy from the families of patients that can motivate to lead to a cure,” said Abrams. “They tend to be one-off philanthropy opportunities, with the bulk coming from grateful individual patients. It funds a significant portion of the hospital every year.”

But the benefits do not come without hurdles. There are challenges that patient stakeholders must overcome.

“Challenges come up in a number of areas, for example, the actual cost of the research,” said Abrams. “As federal funding dries up, this problem gets exacerbated. One of the issues we have is negotiation around overhead.”

She cited the CF Foundation’s example in commercializing Kalydeco with Vertex Pharmaceuticals as an example of success. “Advocacy organizations want to benefit from the upside but administratively it is very problematic. A researcher has been doing work, but then wants to have 25 percent of revenue that comes from it. This makes it difficult to negotiate. As a community we need to think about models that are fair and reasonable for all parties that recognize the contribution for sharing in the blockbusters, to make sure the foundation is not cut out. It can be difficult to negotiate these days.”


Robert Schultz

Robert Schultz

    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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