The fifth annual BIO Patient and Health Advocacy Summit concluded on November 4, bringing together over 300 attendees representing more than 200 organizations including patient advocacy and provider organizations, academia, government, think tanks, professional societies and the biotechnology industry. During two days of thought-provoking educational programming, attendees shared information on health policy issues and best practices while networking with other stakeholders in the healthcare space.
The Summit’s opening keynote luncheon was a town hall-style discussion that explored the potential implications of the upcoming Presidential and congressional races on the way we deliver and access health care. Although none of the speakers were willing to make a prediction on the outcome of the election, the panel suggested that the patient voice is being heard more than ever before and is driving change during this “decade of the patient.” Moderator Fritz Bittenbender, SVP of Government Affairs at Genentech, concluded:
The one thing that is really important, is the fact that we have some very important policy initiatives that have to get done regardless of who wins this next election cycle – particularly for the patients.
Deliberations throughout the day continued to be centered on elevating the patient’s voice through the reauthorization of the Prescription Drug User Fee Act (PDUFA VI) and efforts to incorporate patient perspectives throughout the life cycle of drug development. Richard Pops, Chairman and CEO at Alkermes, recalled the initial planning meetings for PDUFA VI when industry asked what could be done to advance the science of patient input in partnership with the patient community:
The number one thing that came out of those [PDUFA VI] discussions within industry was elevating the voice of the patient…such a simple and profound thought.
Day two of the Summit kicked off with a panel discussion on the continually evolving nature of value assessment frameworks and their increasing role in clinical decision-making. As the application of such tools is expanding, the need to incorporate the patient perspective is becoming more and more apparent. Panel speaker, Dr. Al Benson, III, representing the National Comprehensive Cancer Network, said:
As we know, value has many definitions, but we feel the patient perception of value is most important.
As the day came to a close with the last session, we learned that all players in the healthcare ecosystem need to work together toward a common goal of improving health outcomes for patients. Leah McCormick Howard, VP of Government Relations and Advocacy at the National Psoriasis Foundation, explained how the patient perspective can be used to help inform and shape insurance coverage policies to ensure patient access to care.
As this event has grown over the years, more and more attendees have expressed their sentiments about the value of the Summit and what this means for them from the patient perspective:
“This is an incredible opportunity to connect with stakeholders to learn more about potential collaborations, regulatory issues and the strength in bringing the patients voice early on in the process of therapy development to treat diseases. It would be wonderful to engage with other advocacy groups and other stakeholders that may see our vision and want to join forces in translating therapies for the Charcot-Marie-Tooth Community. In addition, we would hope that our experiences and successes could help others.” – Allison Moore, Hereditary Neuropathy Foundation
“Learning from other non-profits is essential to growing our mission and vision. The American Brian Coalition strives to constantly be aware of what other scientific non-profits are working on so we can align and collaborate.” – Katie Sale, American Brian Coalition
“I began my career simply with the hope of doing something in my father’s memory, but have since met many individuals whose personal stories and courage have added to my passion and commitment. I hope to connect with companies with a mutual focus on lung cancer to see how we may partner together.” – David LeDuc, Bonnie Addario Lung Cancer Foundation
“The BIO Patient & Health Advocacy Summit is a very powerful intersection of pharma, biotech, and advocacy. The exchange of challenges, ideas, concerns, and opportunities at this BIO conference is a very powerful force in refining the perspectives, thinking, and impacting future plans of those attending. The setting is modest in size allowing not just for superficial networking, rather there is time and space for in-depth conversation and follow-up.” – Dean Suhr, MLD Foundation
“It is a wonderful opportunity to network with others who share the concerns of people with pain who have so much trouble with access to care. It provides me the ability to represent people with pain whose voice is often not heard when it comes to the need for a balanced approach to pain management.” – Penney Cowan, American Chronic Pain Association
“The opportunity to learn what is working and not working in other areas and the opportunity to learn the needs of other diseases should provide an additional framework in which to operate. The more informed and trained an advocate can be, the better chance of making a difference in someone’s life.” – Stewart Perry, National Diabetes Volunteer Leadership Council