#savejosh: Campaign to Get Life-Saving Drug for Dying Boy Josh Hardy after Chimerix Says ‘No’ to Save Money
A dying 7-year-old Virginia boy is being refused an experimental drug that may save him because the pharmaceutical corporation that manufactures says it would cut into its profits.
Cancer survivor Josh Hardy is in a very bad way. He’s fighting a viral infection that resulted from a recent bone marrow transplant. His heart and kidneys are failing. He’s vomiting blood several times an hour. His family is by his bedside at St. Jude Children’s Research Hospital in Memphis, Tennessee, hoping for the best but preparing for the worst.
Josh Hardy can be saved. Chimerix, a Durham, North Carolina-based pharmaceutical corporation, has an experimental antiviral medication, brincidofovir, that it has been administering Hardy under ‘compassionate use,’ in which companies are permitted to try early-stage drugs that haven’t yet been approved by the Food and Drug Administration.
“Our son will die without this drug,” Todd Hardy, Josh’s father, told CNN. “We’re begging them to give it to us.”
But Chimerix CEO Kenneth Moch says that can’t happen because if his company gives Hardy brincidofovir under ‘compassionate use,’ it would then be obligated to share the medicine with other patients, increasing costs. Moch told CNN that the company would lose $50,000 per ‘compassionate use’ patient, since insurance companies usually don’t pay for experimental medications.
“If this were just one patient wanting this drug, then this would be a very different question,” said Moch. “But it’s yes to all or no to all.”
Chimerix has already given brincidofovir to some 451 patients since 2009 and is still accepting newborn patients infected with the herpes simplex virus. The company also says it would share the drug in the event of a smallpox bioterror attack.
“We have great compassion for this family, but this is not just about a single boy,” Moch, who said he would feel “horrible” if Hardy dies, is quoted in The Raw Story.
While some right-wing pundits, like the ever-acerbic Michelle Malkin, have rushed to defend Chimerix, Hardy’s plight has caught the nation’s attention and a campaign to save him is well underway. In addition to a #savejosh social media campaign and a Change.org petition that’s collected more than 12,000 signatures as of Tuesday morning, concerned community members have organized caravans from her hometown of Fredericksburg to Chimerix headquarters in Durham, more than 200 miles to the south.
An informal online group calling itself Josh’s Army has been very vocal in its advocacy for the dying boy. Chimerix claims its executives have received email threats. The company claims it is trying its very best to get brincidofovir to the market by 2016, and the money it would lose giving the drug away via ‘compassionate use’ would hinder progress toward making it available for everyone.
A leading medical ethicist told Raw Story he understands both sides of the issue.
“I have huge sympathy for the family,” said Arthur Caplan of New York University Langone Medical Center. “I think they are right to try and see what they can get for their child.”
But Caplan added that Chimerix has limited resources and a responsibility to its shareholders.
“We can’t ask the company to turn into a philanthropy or their investors will back out,” Caplan said.
Plus, he added, it’s not certain that brincidofovir would even work.
“It’s always a long shot that it will help and not make things worse,” Caplan said.
But Todd Hardy told USA Today that a doctor at St. Jude’s told him otherwise.
“Our doctor said ‘This drug will cure and save your son,'” Hardy said. Hardy added that he believes brincidofovir is his son’s best chance for recovery and getting the three things he’s asked for for his 8th birthday, which is on March 31.
“He wants to drink whatever he wants, he wants to be able to walk by himself and he wants to get out of the hospital,” Hardy told USA Today.