The Active Patient: Faces Of Change - Pharmaceutical Executive

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The Active Patient: Faces Of Change


Pharmaceutical Executive


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Last year, San Francisco-based Change.org , an online petition platform, made a name for itself among pharma industry onlookers after a petition for Andrea Sloan, an ovarian cancer patient, sought compassionate use access to BioMarin's PARP inhibitor (BMN-673) currently in development. BioMarin declined to include Sloan in an active clinical trial, which may have been the end of the story. But then things got strange.

Every time someone signs a petition on Change.org, an email is sent to the petition's designated target: in this case, six executives at BioMarin, including CEO Jean-Jacques Bienaime. Other supporters of Andrea Sloan emailed Bienaime directly. In an accidental "reply all" to one of these emails, Bienaime "was a little too candid in a response that he'd meant for other people on his [internal] team," explains Change.org deputy campaign director Tim Newman, who worked directly on the Andrea Sloan petition. "So we helped to link [Andrea Sloan's advocacy group] to a local news channel."

It's not a good idea to use insulting language toward a patient dying of cancer, particularly when you're in control of access to a drug that patient believes could save her life. A media firestorm ensued. Andrea Sloan lived in Austin, Texas, and politicians as varied as Newt Gingrich, Howard Dean, Karl Rove, Ted Cruz, John Cornyn and more than 70 Texas state legislators all endorsed the Andrea Sloan campaign. That's in addition to celebrities including Kathy Bates, Jon Lovitz, Mia Farrow, Rosie O'Donnell and Rosie Perez.

Change.org campaigners select individual, user-generated petitions based on their potential to succeed and to make a demonstrable impact. Once selected, campaigners help petitioners identify the decision-makers capable of responding. They also coach on the wording of petitions, give pointers – a personal photo helps – and suggest potential media opportunities and social media outreach. "Sometimes we need to tell petitioners how to set up a Twitter account, and how to use social media to increase the chances of success," says Brianna Cayo-Cotter, who helps manage Change.org's campaign team, and serves as the company's managing director of communications. Andrea Sloan, however, didn't need much handholding, according to Cayo-Cotter. Sloan had her own media savvy, full-court press advocacy group called Andi's Army; Change.org just helped extend the reach.

The BioMarin controversy came to head when Bienaime was questioned directly about Sloan during BioCentury's NewsMakers in the Biotech Industry conference in New York City last September. Change.org simultaneously issued a press release with links to the offending emails sent by Bienaime to Sloan's supporters, as well as supportive comments made by BioMarin shareholders.

Even though FDA stood ready to approve Sloan's access to BMN-673 through compassionate use, BioMarin still refused, maintaining that it was too early to know whether the therapy would be safe or effective. Critics suggested that BioMarin feared Sloan's public use of the drug would jeopardize the regulatory approval timeline. It seemed Sloan and BioMarin had reached a stalemate.

But then, as a result of Andi's Army and the Change.org campaign, which garnered over 200,000 thousand signatures and a growing number of celebrity endorsements and media reports, another, anonymous pharmaceutical company stepped in and gave Sloan access to its experimental PARP inhibitor. Sadly, it was too late. Sloan died on New Year's Day.


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