Social media campaign convinces company to provide experimental medication to cancer patient

lfalce@centredaily.comMarch 12, 2014 

John Hardy’s family received a miracle Wednesday.

After a whirlwind social media blitz, Hardy, a Philipsburg resident and former Bellefonte teacher, heard the news he had been waiting for.

His grandson, Josh, 7, is receiving a cutting-edge drug that could save his life.

Josh, a tiny sports fan from Virginia, has been fighting cancer since he was just nine months old. It started with malignant rhabdoid kidney cancer, a rare form of the disease that has seen just 50 cases since 1978, Josh’s aunt, Kiley Abersold, of Philipsburg, said.

After fighting that a few times, he was cancer-free for three years. Then came the leukemia. A bone marrow transplant took perfectly, but left Josh with a weakened immune system.

Then came the virus.

With no real defense against the invader, Josh was stormed by the adenovirus in February. At St. Jude’s Hospital in Memphis, Tenn., doctors watched as his condition continued to deteriorate, affecting his heart and kidneys.

One last hope was a drug called brincidofovir, which pharmaceutical company Chimerix calls “the first broad-spectrum antiviral for the prevention and treatment of clinically significant infections and diseases caused by DNA viruses.”

The problem? The drug wasn’t available for Josh, or any other kids fighting infections like his. The drug was considered experimental.

That’s where social media came in.

“We decided we weren’t giving up,” said Abersold. “Then this whole social media campaign just blew up.”

On Twitter, #SaveJosh started circulating last week. The plea for the company to release the antiviral medicine went viral, with thousands of people sharing it in ever-widening circles.

“This campaign about Save Josh, it turned into a huge national campaign,” said John Hardy.

The Hardy family were the carriers, but their fervor quickly spread to others.

Philipsburg native Oakland Raider Jon Condo had the Raider Nation followers on the other side of the country retweeting his posts about Josh. A Change.org petition collected 19,787 signatures. The story was picked up by CNN and Fox News.

On Tuesday night, Abersold was at Sheetz in Philipsburg getting milkshakes for her family when she got the news.

Chimerix was giving Josh the drug.

“I just lost it. I was running around like a chicken with my head cut off,” she said.

Chimerix released a statement confirming the decision, saying it “reached agreement with the U.S. Food and Drug Administration for the immediate initiation of a pilot trial of open-label brincidofovir for the treatment of adenovirus infections in immunocompromised patients. FDA has committed to work expeditiously with Chimerix on the design of a pivotal Phase 3 study that would be a continuation of this pilot study.

Josh Hardy’s story brought to public attention the often-devastating impact of adenovirus infection, and helped accelerate a discussion between the FDA and Chimerix regarding the need for additional clinical development to assess brincidofovir’s potential in adenovirus infection. This study is expected to begin with Josh Hardy as the first patient enrolled on Wednesday, March 12, 2014.”

And it did. His grandfather confirmed Wednesday that a plane with the precious drug reached Memphis, and Josh was set to receive his first dose. It was exactly what they wanted, and totally unexpected at the same time, just like Josh.

“He is a walking surprise,” said Abersold. “You never know what you are going to get with him.”

Contact Lori Falce at 235-3910 or on Twitter @LoriFalce.

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