Boy will get life-saving medicine after mom's grassroots appeal to drug company
The previously denied experimental pharmaceutical drug offers hope for a family that had little, proving that a mom's efforts can change the world — one 7-year-old boy at a time.
Wed, Mar 12, 2014 at 12:04 PM
Seven-year-old Josh Hardy survived a rare form of kidney cancer that he was diagnosed with at 9 months old. He has since beat cancer in his thymus, lung and bone marrow. But now he is in critical condition as an acute infection ravages his body. He is in heart and kidney failure, he is vomiting blood hourly; the prognosis is grim.
Doctors say that the only thing that can save him is an experimental antiviral drug, brincidofovir; but the pharmaceutical company that makes the medicine, Chimerix, had steadfastly denied the request to help save the boy’s life, according to CNN.
But Josh's mom, Aimee Hardy, was taking no for an answer. She created a Facebook page, gathered supporters and started a mini-revolution. After tireless campaigning by the family and the supportive troops known as Josh's Army, Chimerix has reversed the outcome. The company announced on Tuesday that Josh will receive the medicine and become the first patient in a new trial for the drug.
Josh's father, Todd, said that Chimerix President Kenneth Moch phoned him just before the company made the announcement.
"It was wonderful," Todd said. "Truly wonderful. It was overwhelming."
Aimee concurred. "Glory to GOD!" she wrote on Facebook. "They are releasing the drug for Josh!!!!!!!!!"
Although the medicine has not yet been established for use in children, the FDA will allow its administration through a policy known as "compassionate use," which paves the way for someone with a serious or life-threatening disease to solicit a drug company for an experimental drug. The FDA approved approved 974 compassionate use arrangements in 2013, but pharmaceutical companies have no obligation to comply. Chimerix has had more than 80 requests for brincidofovir thus far.
The company had said that helping Josh would take resources away from developing the drug – the cost would be $50,000 – and would slow down efforts to get the drug on the market, but company officials seemed pleased with the change of heart.
"I'm happy for Josh, and I'm happy for many patients," said Moch. "We've come up with a way of helping not just Josh, but helping other patients in need, and there are many."
St. Jude Children's Research Hospital in Memphis, Tenn., where Josh is in intensive care, said on Tuesday that they expect to receive the medication within 48 hours.
"We’re just looking forward to the great success of the drug and the great success of the company to help other people,” said Josh’s mom on Wednesday morning. “Just tremendously excited.”
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