UPDATE — 9:07 p.m. ET: The drug company has reportedly reversed their decision and will now provide the much-needed medicine to 7-year-old Josh Hardy.
He’s survived four battles with kidney cancer, heart failure and a bone marrow transplant.
But now 7-year-old Josh Hardy’s life might be in jeopardy once again. This time, because a drug company has denied him access to medication that holds a potential cure for a deadly virus — even after a charity offered to pay for it.
After living two years cancer-free, doctors discovered Hardy had a bone marrow transplant in Nov. 2013 during a bone scan. He subsequently underwent chemotherapy and a bone marrow transplant in Jan. 2014. Following the procedure, however, the 7-year-old boy developed adenovirus — an infection that can be fatal when it strikes individuals with compromised immune systems, according to Fox News.
“Normally, Josh’s immune system would be able to handle the adenovirus if his immune system was set free,” Hardy’s mother, Aimee, wrote on her son’s CaringBridge.org page. “The challenge is his immune system can’t be set free yet because his body is still trying to adapt to the new bone marrow cells. So to keep the body from killing the new cells, they have to suppress the immune system, thus creating ideal conditions for adenovirus to advance. Catch 22.”
According to Fox News, doctors at St. Jude Children’s Research Hospital recommended the 7-year-old be treated with the antiviral drug Brincidofovir — a drug that has yet to receive FDA approval.
In the past, however, the company that makes the drug, Chimerix, has allowed access to the medicine for certain patients. Now, despite receiving $72 million in federal funding, the drug company says “they cannot afford it.”
“As we progressed to larger and more complex safety trials, we made the decision two years ago to stop the program and focus resources on earning FDA approval,” Kenneth Moch, the CEO of Chimerix, told Fox News.
Moch added to CNN that helping Josh might actually hurt others, since his small 50-person company would be forced to redirect resources to his one particular case, instead of focusing on gaining FDA approval. He said he felt “horrible” about the situation, but estimated it would cost roughly $50,000 to treat the child.
After hearing of the financial issue, a pediatric cancer charity — the Max Cure Foundation — offered to pay for the costs associated with the treatment. A representative for the charity said that Moch still refused and even hung up the phone on him.
“I spoke to Mr. Moch yesterday by phone. I told him that we had the $50,000 that I thought he was claiming he needed to supply the drug,” Richard Plotkin, vice chair of the Max Cure Foundation, told Fox News. “He then told me it isn’t about money. He told me it’s all about ethics. I said, ‘Fine, tell me why you will not give [it to] this little boy.’ If he does not get the drug, he will die this week, I’m told. He said he cannot make an exception.”
Undeterred, the Hardy parents have turned to social media, in a bid to persuade the drug company to give their son access to the drug.
“Our son will die without this drug,” Todd Hardy, Josh’s father, told CNN. “We’re begging them to give it to us.”
A “Save Josh” Facebook page has attracted widespread attention, garnering nearly 20,000 likes. Thousands of others have sent tweets to the company, encouraging them to allow access.
At the time of publication, the drug company continued to stand firm on their original position.
“If this were just one patient wanting this drug, then this would be a very different question,” Moch told CNN. “But it’s yes to all or no to all.”
Watch ‘Real News’ Discuss:
Follow Oliver Darcy (@oliverdarcy) on Twitter