By Caroline Chen
In early 2014, 7-year-old Josh Hardy was dying. He’d been battling kidney cancer since he was a baby and survived 10 intensive chemotherapy treatments, which severely weakened his immune system. Soon after undergoing a bone marrow stem cell transplant last January, he developed a life-threatening respiratory virus.
Chimerix, a small biotechnology company in Durham, N.C., had an experimental, unapproved drug in development that might help, Josh’s doctor at St. Jude Children’s Research Hospital told the boy’s family. They twice asked Chimerix to provide Josh the drug and were refused both times. “Please help us save our son,” his mother, Aimee, wrote on her Facebook page on March 6. “If anyone with influence can help us convince the Chimerix Inc to release the drug for compassionate care for our son, we would be forever grateful.”
Within several days, a #SaveJosh hashtag was trending on Twitter. A Facebook page set up for Josh’s cause registered 27,000 “likes” in one week. Social media posts supporting the family’s effort to get the drug were directed at Chimerix and its chief executive officer, Kenneth Moch, who also received thousands of e-mails and phone calls. If Josh dies, asked one tweet, “how will Moch live w/himself?” Another said that Moch’s decision to withhold the drug carried “a HEAVY Karmic price!” Yet another called Chimerix executives “cowards … Ken Moch, I can only hope this doesn’t happen to your child.” And Moch was the target of death threats that the FBI deemed credible, so he and his wife moved out of their home for several days.
Under intense pressure, the company worked out a plan with the Food and Drug Administration to add a clinical trial for the drug, brincidofovir, and to enroll Josh as its first patient. “It was relatively an easier campaign because we had a very tangible goal,” says William Burns, Josh’s uncle, who first used the hashtag and set up the “Save Josh” Facebook page. “We had an immediate need, not like, ‘Give more money to cure cancer 10 years from now.’ ”’ [read more…]