Voices Carry

On April 15 in Cambridge, MA, a panel of biotech leaders discussed how patient advocacy has played a pivotal role in shaping the biotech industry and how it informs and adds value to new therapies in development today. Moderated by Genzyme CEO David Meeker, panelists John Maraganore, Bill Haseltine, and Joan Finnegan Brooks who have each played roles in shaping the history of advocacy shared examples from the AIDS, cystic fibrosis and rare disease communities.

A few decades ago, patients depended solely on medical providers for disease information and they were often considered a nuisance by drug developers. Today, health and research information is broadly available and patient groups oftentimes collaborate with biotech companies and raise funds for research. Yet, patient protests still take place in response to high costs and limited access to certain medicines. This discussion explored what the biotech industry can learn from the history and evolution of patient advocacy.


Joan Finnegan Brooks Joan Finnegan Brooks is the founder of Patient-Focused Market Research, integrating fact-based patient perspectives into drug development and marketing programs. She has worked with cystic fibrosis (CF) organizations, consulted for leading biotechnology and pharmaceutical companies involved in CF drug development and patient advocacy groups for over 25 years.


Phil Brown Phil Brown directs the Social Science Environmental Health Research Institute at Northeastern University. He is the author of ten books including Social Movements in Health, and Contested Illnesses: Citizens, Science and Health Social Movements. His current research includes health social movements.


Bill Haseltine William A. Haseltine was a professor, founder and chair of two academic research departments at Harvard Medical School and Harvard School of Public Health from 1976-1992. He is well known for his pioneering work on cancer, HIV/AIDS and genomics. Haseltine was a founder of AMFAR, worked closely with HIV activists and helped to increase the HIV research budget from $1 million to $320 million. He is the founder of Human Genome Sciences, Inc. along with several other successful biotechnology companies.


John Maraganore John Maraganore has been CEO of Alnylam since 2002. Prior to Alnylam he served as an officer and a member of the management team for Millennium Pharmaceuticals, Inc. and worked at Biogen, where invented and led the discovery and development of Angiomax. Prior to Biogen, he was a scientist at ZymoGenetics, Inc., and The Upjohn Company.



David Meeker David Meeker has been CEO of Genzyme since 2011. Meeker joined Genzyme in 1994 as medical director to work on the cystic fibrosis gene therapy program. As president of the global rare disease business, he oversaw the global launches of Aldurazyme, Fabrazyme, and Myozyme. He is a board member of Prize4Life, an organization dedicated to accelerating the discovery of treatments for amyotrophic lateral sclerosis.



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