Essay — From the June 2016 issue

Hashtag Prescription

The hidden cost of crowd-sourcing a cure

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On a cold Thursday evening in March 2014, a New Jersey trial attorney named Bill Burns browsed on his phone while waiting for the bill at a sushi restaurant near his home. He scrolled to a Facebook post by his sister-in-law, Aimee Hardy. “Please help us save our son,” the note began. “Share this post if you believe a child’s life is more important than money.” What followed was brief and heartbreaking:

The situation is this: Our son, Josh Hardy, who recently had a bone marrow transplant, has developed the adenovirus. This [is] a deadly virus for people who have weak immune systems. There is a drug called Brincidofovir that has been proven to treat the adenovirus effectively. Our doctor at St. Jude told us they ran the study for the drug company and he knows it will work. However, the drug company has refused to release the drug for compassionate care because they are trying to take it to market. Basically they are not going to save a child’s life for money.

Josh was a voluble seven-year-old who had been diagnosed with a rare and aggressive kidney cancer as an infant. As Burns knew well, the boy had spent much of his childhood in hospitals, sometimes on life support, but for the most part the surgeries, chemotherapy, and radiation treatments had been effective. Until his bone-marrow transplant, which took place at St. Jude Children’s Research Hospital, in Memphis, in January 2014, Josh’s hopes of playing for the middle-school baseball team had not seemed wholly implausible.

Illustrations by Simon Pemberton

Illustrations by Simon Pemberton

The transplant had been successful, yet it had also made Josh susceptible to diseases that healthy children shake off without much trouble. Though adenovirus is not usually serious — it is best known as a cause of pinkeye and the common cold — the pathogen quickly overwhelmed his sputtering immune system and left him in critical condition. The doctors at St. Jude told Aimee and her husband that without further treatment their son might have only a few weeks to live.

The Food and Drug Administration has not approved any treatments for adenovirus infections, but as Aimee noted, one of Josh’s doctors had suggested a new drug called brincidofovir. Because brincidofovir was still undergoing clinical trials — contrary to Aimee’s post, the drug had not yet been proved safe or effective — it could be procured only through a special FDA protocol that allows doctors to prescribe experimental drugs. Known as compassionate use, or expanded access, the protocol was formalized in the 1980s as a response to AIDS activists who were frustrated with the pace of approval for antiretrovirals. It was designed as a last resort for dying patients who have exhausted their other therapeutic options.

The current compassionate-use protocol requires the assent, on a case-by-case basis, of a drug’s manufacturer and the FDA; over the past decade, about 9,000 requests have been granted. Josh’s doctors had twice formally asked Chimerix, the North Carolina pharmaceutical company that makes brincidofovir, to release the drug under compassionate use. The company refused both requests.

By the time Burns read Aimee’s Facebook post, it was too late in the day to call Chimerix or his congressional representatives. Instead he took to social media, tweeting out, to just ten followers: “Help #Save a 7 year old #life #chimerix #josh needs your #help,” with a link to Aimee’s post. His second tweet, a few minutes later, included a phone number and email address for Chimerix and reiterated the plea: “#Child #cancer patient needs ur help Release #brincidofovir #savejosh.”

The next day, Burns spoke to a friend about Josh’s case. The friend tracked down Vickie Buenger, a business professor at Texas A&M and the president of the Coalition Against Childhood Cancer. As soon as Buenger read Aimee’s Facebook post, she dispatched a dozen quick emails, including one to Richard Plotkin, a retired trial attorney who had started a childhood-cancer foundation after his young grandson survived lymphoma. Buenger knew Plotkin to be a tenacious activist. She told him, “This sounds right up your alley.”

Plotkin had only recently heard of compassionate use, but he was so infuriated by Chimerix’s refusal that he went to work instantly. He called every media contact in his address book and instructed the social-media manager of his foundation to attach herself to her computer over the weekend. He emailed Chimerix’s board members and investors and had what he described to me as “two very tense, confrontational phone calls” with Kenneth Moch, the company’s CEO. Plotkin devised a public-relations strategy to present Chimerix as the murderer of a boy who had just overcome kidney cancer. He told me that Josh had reminded him of his grandson. “If Josh died, I would’ve destroyed Chimerix,” he said. “I would’ve destroyed Ken Moch also. I was so angry.”

While Plotkin and the others spread news of Josh’s predicament through an informal network of child-cancer advocates, Aimee’s post and Burns’s tweets blossomed into a social-media phenomenon. Pictures of the boy circulated on Facebook — one showed him with a puppy, his brown hair streaked blond from the sun; another showed him grinning in a Washington Nationals jersey — and Robert Griffin III, the NFL quarterback, tweeted about Josh to his million-plus followers. CNN interviewed Aimee on Sunday afternoon, and the next day she appeared on Fox and Friends. By then, only four days after Aimee’s initial public plea, the #savejosh hashtag was one of Twitter’s top five trending topics in the United States, a SaveJosh Facebook page had been viewed more than a million times, and strangers had volunteered tens of thousands of dollars to try to buy the drug from Chimerix.

On Tuesday, March 11, Kenneth Moch yielded to public pressure. That afternoon, Chimerix sent several doses of brincidofovir by plane to Memphis; two weeks later, the levels of adenovirus in Josh’s blood were nearly undetectable. According to Ashok Srinivasan, the physician from St. Jude who recommended the drug to the Hardys, brincidofovir saved Josh’s life. “I have no doubt about that,” he told me.

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

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