Be forewarned: No matter how powerful the company, there’s no place to run, no place to hide in the new era of citizen journalism

March 24, 2014
save josh Facebook page

Imagine being the master of your universe: the CEO of a big-swinging biotech company with a soon-to-be FDA-approved drug, some $100 million of cash on the balance sheet, investors that include JP Morgan and The Regents of the University of California. So fortunate are you and so lifesaving your drug, that the Federal Government extends to you $70 million in taxpayer grants. Life is good. The golf game is improving. Retirement? Maybe Boca. Aspen.Or Malibu.

So hey, there’s room for a little arrogance and disinterest when doctors at Saint Jude’s Hospital call about a 7-year old little boy who is dying of a viral infection and whose life just might be saved if only your company can spare a few doses of the wonder drug, which is now in stage-three clinical trials. You politely decline to help. It’s more bother than it’s worth, so you coyly hide behind FDA bureaucracy, cite the $50,000 price tag, and respectfully choose not to open a Pandora’s Box through which every other family’s sick kid will climb. You write the family an email with a boilerplate condolence. But you have bigger fish to fry, what with all your responsibilities as CEO of publicly-traded Chimerix (Nasdaq: CMRX). You’ve gotta keep that stock price high so investors get full value when big pharma comes a-calling.

And then bam. Not everyone’s going to take no for an answer. Especially not this family. No, not this tightly knit clan of tough minded individuals, entrepreneurs now, who as kids bloodied each other’s noses playing varsity football and wrestling at Bellefonte High, in Central PA, a breeding ground for Penn State athletes. Even their name smacks of resolve. The Hardy family wasn’t about to roll over and neither were their friends, the media, and their Bellefonte brethren. They decided not to play along with Chimerix CEO Kenneth Moch’s game plan to drug discovery riches. Instead, they determined to launch an all-out assault to publicly embarrass Chimerix to force them to show human decency and compassion, and just maybe save Josh Hardy’s life.

It started with a Facebook page and a call to the young boy’s local newspaper. The AP caught wind and published its own story. Organizations as diverse as Fox News and read of it and ran stories on their broadcasts and web pages. The floodgates open. USA Today, MarketWatch, and CNN all did pieces. The father of Alex Scott, whose daughter succumbed to cancer after founding Alex’s Lemonade, the charity, penned a heart wrenching plea in Huffington Post. Others jumped in. The Max Cure Foundation, a pediatric cancer charity that helps sick kids, applied thumb screws when its Vice-Chair Richard Plotkin, appeared on live national TV to offer Chimerix the $50,000 it wanted for treatment. Chimerix’ CEO simply hung up when Plotkin called him directly.

SAVE JOSH: It all started on with this Facebook page

Big mistake. In one week, some 27,000 people Liked the Save Josh Hardy Facebook page and #SaveJosh quickly trended on Twitter. The world took note and pounded the company. The FDA finally tired of Chimerix’ blame game that cast them as villain. They interceded under the crush of public outrage to force Chimerix to create a new clinical trial of 20 people with Josh Hardy being the first to receive the drug. Amazingly, the drug was delivered overnight, a scant nine days from the moment the family decided to act.

Josh is still sick, but at least he now has a fighting chance and is improving, something that would have been impossible before the age of citizen journalism.

The irony of this entire tale is that the Chimerix drug does seem to be a real miracle. The company no doubt will see a huge windfall for its commercialization. But it could have been more. It could have been that shiny example on the hill of how big business can make big bucks and do good along the way.

But somewhere along the line, during the endless investor presentations and board meetings, the FDA paperwork and recruitment of Ph.D.’s, Chimerix lost its way and its humanity and believed no one would notice. And no one might have noticed, not five or six years ago before revolution, before power was transferred to regular folk, those whose Internet connections now have as much impact as some big shot with Wall Street connections.

It was a well-fought firefight, full of corporate missteps and complexities and certainly open to interpretation. Chimerix’ stock price actually increased during the controversy as people learned of its science. Even Art Caplan, the noted commentator on medical ethics, chimed in, stating that the publicity worked this time because Josh is cute and his family is sophisticated. Hate to differ, Dr. Caplan, it worked because of the times in which we live and the tools now available to anyone. It worked because citizens now have unprecedented power to right serious wrongs. And companies like Chimerix would do well to understand the real risk of institutionalized arrogance and the reputational consequences of acting as if it’s 1995.

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