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Backlash as boy gets medicine

Social media second-guess after drugmaker relents

Just hours after social media supporters of a dying 7-year-old boy pressured a reluctant biotech company into giving him an experimental medication, the backlash began.

Is “it rite to save 1 child an not the rest?” wondered one commenter on a news forum.

“It’s really not fair to the thousands of others that were turned down just because they didn’t make a big public outcry,” said another.

The Herald-Sun newspaper in Durham, N.C., where the company that makes the drug is based, said it was glad for the boy’s sake that he was able to get the medicine. “But the process leaves us pained,” the editorial board wrote. “This is no way to make health-care decisions.”

The story of how Joshua Hardy – a first-grader from Fredericksburg, Va., who is fighting off an infection after getting a bone-marrow transplant – got access to an unapproved treatment when others with similar requests were turned down highlights the ethical conundrums facing doctors, companies and regulators in the era of Facebook and Twitter.

In the days leading up to the drug company’s change of heart March 11, contrasting photos of Josh – smiling at baseball games and then lying in his hospital bed with tubes sticking out of his body – were all over the Internet. He has beaten cancer four times since he was 9 months old. But the disease has left his body without much of an immune system, and in February he was infected with a virus that left him close to death.

Nearly 20,000 people signed a petition supporting “compassionate use” for Josh, which allows a drug to be administered outside of a clinical trial. Hundreds bombarded Chimerix, a small, publicly traded company that makes the drug, with emails and calls on the boy’s behalf.

Critics of the strategy say they sympathize with Josh’s parents and admire them for being willing to do anything to save their child, but they decry the crowdsourcing of medical decisions and warn that the case may set a dangerous precedent.

“You couldn’t get a more troubling and impossible-to-resolve moral dilemma than this one,” said Arthur Caplan, director of the division of medical ethics at New York University’s Langone Medical Center.

From the perspective of the public and future patients, it’s best for the company to focus on getting the drug approved as soon as possible so that the largest number of people can be helped, Caplan said. But from a patient’s point of view, getting immediate access to the drug is what’s important.

“It’s a trade-off between the public good versus self-interest,” Caplan said. “They conflict. There is no way of getting around it.”

Since the early days of the AIDS epidemic, patients with life-threatening conditions have become increasingly vocal about demanding access to drugs still in development. The Food and Drug Administration in 1987 created rules, amended in 2009, for expanded access or compassionate use to allow what it says is “broad and equitable access” to those treatments.

But the program remains limited. Since 2009, the agency has approved an average of 1,030 applications each year; each request may be for multiple patients.

Josh, who on Wednesday received his second dose of the treatment – an antiviral drug called brincidofovir – remains in intensive care at St. Jude Children’s Research Hospital in Memphis.

His mother, Aimee Hardy, wrote hopefully on Facebook that the virus in Josh’s blood is replicating more slowly, and he is in less pain than before.

“Glory to God,” she said, “the medicine is working.”