The Changing Face of Patient Advocacy

Pleas for compassionate use access are on the increase, and Change.org is giving patients an audience. In PharmExec’s latest cover story - The Active Patient: Faces of Change by Ben Comer, Brianna Cayo-Cotter, Change.org’s managing director of communications, says one successful petition often begets another. Politicians and celebrities, in unprecedented fashion, are coming out in support of compassionate use petitions.

“We call it wildfire,” says Cayo-Cotter. “When one person starts a petition for access to a drug, you’ll start to see dozens and dozens of petitions…that ends up creating a space for there to be a real policy change, or an industry shift around an issue.”

Like the AIDS activist groups ACT UP and TAG, and their impact on US compassionate use policy in the 1980s, Change.org is in a position to push regulators and the drug industry to rethink issues that separate the medical establishment from its patients.

“Anybody can use Change.org,” says Cayo-Cotter. “It can raise a patient’s profile in a way that was impossible even three years ago.”

Patient advocacy groups are expanding beyond the traditional boundaries and roles that used to separate individual players in the healthcare system. There’s no commodity more valuable than human health. Expect patient advocacy efforts to continue expanding into areas including R&D, healthcare delivery and global access policy.

Other patient advocates profiled in The Active Patient: Faces of Change include Camila Strassle, an advocate working with the Cystic Fibrosis Foundation; Susan Grant, a patient and filmmaker promoting public awareness of frontotemporal dementia; and Sarah Krug, executive director at Cancer101, an organization that provides education to cancer patients based on individual needs.