It seemed like a question out of left field at the time: “How many of you maintain and monitor Twitter, Instagram, Facebook, and Tumblr accounts?” The question was posed by Jeremy Levin, former president and CEO of Teva Pharmaceuticals (NYSE: [[ticker:TEVA]]), and just a few hands went up at the 2014 CED Life Science conference in Raleigh, NC. “Well, you’d better start, because that’s where your patients are,” Levin said. “And they’re actively talking about what you’re doing.”
One year later, and it’s clear how prescient those comments were. Small biotech companies are learning both the benefits of engaging with patient advocates during drug discovery and clinical trials, and the potential pitfalls of engaging in a very public debate with stakeholders who have a keen interest in accessing potentially life-saving treatments. Now that social media has moved those conversations into real time, how should researchers respond?
Chimerix (NASDAQ: [[ticker:CMRX]]), based in Durham, NC, offers a case in point. The company and its then-CEO, Ken Moch—coincidentally, one of the co-chairs of the conference where the social media question was raised—found themselves under siege in the court of public opinion. The parents of a 7-year-old boy used Facebook and Twitter to publicize their request to Chimerix to deliver its experimental drug, brincidofovir, to their son after he developed a life-threatening respiratory virus following a bone marrow stem cell transplant to combat kidney cancer. Clinical trials had shown evidence of brincidofovir’s safety and efficacy, but the family learned that a compassionate use program had ended, and that making the drug available to one patient would jeopardize the approval process designed to make the treatment available to many. In addition, Chimerix had turned down other requests for expanded access to the drug, and was concerned about making an exception that raised questions of who got the treatment, and why.
Knowing how to respond to requests for access to experimental treatments is a dilemma confronting many small biotechs and researchers around the country held their breath as the online campaign against Chimerix played out. Within days, a hashtag relating to the case was trending on Twitter and Moch began receiving threatening phone calls and e-mails. Mainstream media coverage followed, often painting the company as out-of-touch and heartless, while playing down the more subtle, complicated regulatory issues surrounding compassionate use and experimental trials. In the end, Chimerix received FDA approval to launch a new trial and enrolled the boy as its first patient. The boy survived, and is approaching his 9th birthday; Moch and the company soon parted ways. He now is sharing his experiences about the ethical dilemmas facing drug developers in a time of social media and patient advocacy.
What should companies take from this experience? CEOs now are being advised to develop a crisis communications plan that involves not only monitoring social media, but engaging with patient advocacy groups on a regular basis to build trust and educate them on experimental therapies, regulatory issues, and even pricing strategies. There is no doubt that these conversations have the potential to push both groups well outside their comfort zones. But providing context for difficult decisions may help mute an uproar, and even rally patient support to explain the company’s position to peers and the news media.
Working with patient groups that are active on social media certainly can have positive outcomes. Take another example from North Carolina—the Chordoma Foundation, founded by Josh Sommer, who was a student at Duke University in 2007 when he was diagnosed with that rare form of cancer. The Chordoma Foundation now has more than 6,000 followers on Facebook, and is affiliated with another Facebook group of Chordoma survivors. Sommer says that enrollment in a newly announced clinical trial last year was completed in a few days, after his group promoted it on Facebook and Twitter.
Additionally, the foundation raised money for research in its early years by winning a competition for nonprofits that generated the most donations through Facebook. Sommer has twice been named to Forbes’ “30 under 30” list of health innovators, for recognizing that community building can amplify scientific progress.
For better or worse, social media is making patient groups partners with biotechs in discussions about drug discovery and clinical trials. Company leaders have to understand the needs, concerns, and hopes of the parents, families, and patients, even if that perspective seems unrealistic or is different from their own. It’s important to communicate regularly to share information, show respect, and build trust. That trust is hard to gain in a crisis. Should such a crisis arise, however, CEOs must be prepared to act, and act quickly. A thoroughly vetted crisis communications plan is just as important as any other corporate document.
I’d be willing to wager that at this year’s CED Life Science Conference, (March 3-4), should the question about engagement on Twitter, Facebook and other communities be raised, we’ll see many more hands go up. We’ve only begun to explore the ethical and emotional intersection between biotech researchers and potential beneficiaries of their work, newly empowered by technology, who want and expect to be part of the solution.
