Advocacy Groups Raise Patients’ Voices in Biotech

Venture philanthropy and greater advocacy by disease nonprofits are helping patients become a force to be reckoned with in the pursuit of breakthrough treatments, according to The Boston Globe. Reporting from the J.P. Morgan Healthcare Conference in Boston this week, the newspaper says patients and advocacy groups are making their voices heard in forums traditionally dominated by executives, officials, and researchers and are increasingly driving efforts to develop new treatments.

The article notes the potential game-changing impact of the Cystic Fibrosis Foundation’s $3.3-billion sale of royalty rights for drugs developed with the help of the foundation’s investment in a pharmaceutical company. “We hope to be able to convert our knowledge of patient needs into benefits for the companies and the patients,” said Walter M. Capone, president of the Multiple Myeloma Research Foundation, which is conducting its own genomic analyses to help drug companies do clinical trials with experimental treatments.