Essay — From the June 2016 issue

Hashtag Prescription

The hidden cost of crowd-sourcing a cure

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To most observers, the #savejosh campaign was an unmitigated success, proof of the speed, power, and democratic potential of the Internet. In the days following Chimerix’s delivery of brincidofovir, “How Social Media Saved Josh Hardy” stories were everywhere. The boy’s Twitter and Facebook supporters were quick to congratulate themselves for protecting a seven-year-old from the wiles of a profit-driven drug company.

Arthur Caplan, the founder and director of the Division of Medical Ethics at New York University, was not among those applauding. A few hours before Moch announced Chimerix’s change of course, at a time when even BIO, one of the pharmaceutical industry’s largest trade organizations, was caught flat-footed by the public response, Caplan had published an op-ed on the NBC website arguing that social media and compassionate use were a dangerous combination. The #savejosh campaign had followed Aimee in framing the fight as a dispute between Big Pharma and an ailing seven-year-old. Caplan, however, insisted that the ethical stakes were more complicated. A full moral reckoning, he said, demanded consideration of the needs of a hidden third party: not just Josh and Chimerix but the other patients who, now or in the future, might also benefit from brincidofovir.

by Simon PembertonCaplan suggested that giving Josh the drug through the compassionate-use protocol might endanger its approval by the FDA. In the worst case, Josh would die after taking brincidofovir, and that outcome would “be held against the drug and the company until they can show the drug did not kill him.” In the meantime, other patients would find their access to the drug severely restricted. What’s more, an online campaign powered by photographs of a sick little boy raised hard questions about fairness. “Those who are not very cute get less attention in their pursuit of unproven drugs,” Caplan wrote. “If Josh had parents who did not understand how to use social media, he would already be out of luck.”

Caplan is a large man with an ebullient demeanor. He is a frequent participant in public debates about bioethical issues, but when I met him recently, at his tidy, sunlit office in Manhattan, he said that “going toe-to-toe with a mother of a very sick child and saying there’s other things to think about is very, very hard politically. I think a lot of people just feared being on the wrong side of a pretty articulate and desperate mom.”

Caplan may have been alone in voicing his reservations about the #savejosh campaign, but he was not the only person to harbor them. George Annas, the director of the Center for Health Law, Ethics, and Human Rights at Boston University, told me last summer that “this whole community-going-on-a-vengeance thing is not a decent way to get health care for your child.” Like Caplan, he believed that allowing public pressure to determine drug access would inevitably result in unfair outcomes. “You have to look good on TV, and you need a group of people who identify with you,” he said. “This is not a way to distribute drugs.” Even Srinivasan, Josh’s doctor at St. Jude, who had been involved with the clinical trials for brincidofovir, told me that he was uncomfortable with the social-media campaign. “Usually we approach these drugs in a logical, scientific manner,” he said, “instead of having an emotional outburst about it.”

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is a physician and assistant professor of medicine at Columbia University.

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