The #SaveJosh Story – How Social Media May Have Saved a Boy’s Life

It started with a phone call on March 5, 2014, and then a desperate plea for help commencing March 9th, which ended 48 hours later, as one of the biggest social media success stories of the year.

Josh HardyOn Sunday, March 9th, 2014 the Max Cure Foundation Marketing Director received a phone call from the Vice-Chair, Richard Plotkin, looking for help to save the life of 7 year old Josh Hardy. Josh had beaten cancer four separate times in his short 7 years, but his perseverance came at a price. A bone marrow transplant in January left Josh vulnerable to viral infections. He developed an infection in mid-February that was treated until March 4th with drugs that could no longer be given due to the harm they were doing to his kidneys. On March 9th, Josh was lying in a hospital bed in ICU at St. Jude Children’s Hospital in Memphis, with only one hope, an experimental drug currently in stage 3 trials called Brincidofovir. Josh’s doctors prior to March 5th, contacted Chimerix, the manufacturer of Brincidofovir, requesting a compassionate use waiver for the drug to be given to Josh. Doctors believed it was the only thing that could save his life. The doctors believed that the FDA would readily grant such a waiver if Chimerix requested it.

Chimerix refused to provide the drug.

Max Cure Foundation, a non-profit organization dedicated to the fight against pediatric cancer, was informed on March 5th about Josh’s story and immediately began communications with Chimerix. Max Cure was told by the Hardy family that if the drug were not immediately received by St. Jude, Josh would probably die by the following weekend. Todd Hardy, Josh’s Father, Spoke to Richard on Saturday, March 8th. He authorized Max Cure to rally it’s team and engage in a media blitz to force Chimerix’s hand to release the drug. Richard had been told on March 7th by the President of Chimerix that the company would not give St. Jude the drug in that it was a phase 3 clinical trial and had discontinued seeking compassionate use waivers from the FDA for the drug. It also claimed it had limited resources and could not make an exception for Josh. Max Cure reached out to colleagues with the Coalition Against Childhood Cancer (CAC2) for help, and sent out emails to friends in the media, arranging for Josh’s Mom to go on CNN Sunday night, March 9th. During that interview it was stated by the CNN Medical Correspondent that Chimerix claimed it would cost $50,000 to give Josh the drug. Max Cure immediately attempted to raise those funds to give to Chimerix in exchange for the drug.

Save Josh Social MediaAs a direct result,  Max Cure Foundation on Sunday, March 9th, took to the internet to help save Josh. The Max Cure team knew they had to try and help. They hoped that with the help of their friends, supporters and followers, including other members of CAC2, they could convince Chimerix to change its mind.

“We have been talking to our friends for a year and when you are truly engaged with your followers on social media, you get a good sense of what they are capable of, and our friends are obviously capable of moving mountains.” Said Max Cure Foundation’s Marketing Director, Erica Bailey. “I knew that once we told Josh’s story on Facebook, and activated our Tweet Warriors, the community wouldn’t stand for it and they would let their voice or in this case, their roar, be heard.”

The initial post was a simple rally for help with an introduction to Josh and a link to the page his family created. This post alone had over 4,000 Likes, 8,833 Shares and 711 comments reaching over 540,000 people. This was just the beginning.

Screen Shot 2014-03-20 at 12.39.29 PMMax Cure Foundation asked people to do anything they could to help spread the word, encouraging people to change their profile picture to #savejosh and share the message with all their social media friends and followers. Max Cure followers bombarded Chimerix with phone calls, emails, twitter and the like  demanding the company either help Josh, or give a damn good reason why they wouldn’t.

Within 48 hours more than one million people viewed Josh’s story on Facebook from the Max Cure page. Erica said she was shocked to watch the movement turn from “shares” and “likes” to emails, phone calls, and a scheduled rally to take place at Chimerix’s corporate offices on Thursday, March 13th. “I knew it was possible, but I didn’t expect it to happen the way it did. I don’t know all our social media fans personally, but I can tell you I “like” every single one of them,” she said.

Screen Shot 2014-03-20 at 1.08.53 PMBecause of The Max Cure Foundation’s network, through the friends in the media, they drove the story to mainstream outlets. News outlets from New York to Los Angeles  broadcast Josh’s story into millions of homes. The story reached the media in Italy, Brazil, France and England and even traveled as far as the Middle East. Josh’s mother appeared  on CNN,  Fox News Network and CBS, all of which  had been arranged through Chairman David Plotkin’s friends’ in the industry. Max Cure, firmly asked Chimerix to reconsider. Stories rank on local television outlets in Chimerix’s home state of North Carolina and elsewhere. As of Monday, late afternoon, March 10th, Chimerix was still adamant it would not supply the drug to Josh to save his life.  Max Cure offered to give the $50,000 for the drug, which had been committed to Max Cure by three different sources. But, Chimerix told Max Cure at the time it was not about the money.  Time was running out.

Richard appeals to board on fox and friends with logoMax Cure Vice Chairman Richard Plotkin in a last ditch effort to save Josh appeared on Fox News on Tuesday Morning, March 11th and appealed directly to the Chimerix Board of Directors to overturn the decision of its President not to give Josh the drug. He followed up with an email communication to each of the board members. Bloggers and journalists increased their emphasis on the story and continued to make saving Josh an internet-wide priority. Max Cure continued their Facebook push and the #SaveJosh hash tag was trending number 8 according to CNN Trends. Ultimately Max Cure reached over a million people on Facebook and half a million people on Twitter through this campaign.

Screen Shot 2014-03-20 at 12.38.44 PMBy Tuesday, the exposure was so widespread that Chimerix had no choice but to reevaluate its position. In less than 48 hours the company had received so much negative publicity; it did something not many Bio Tech companies would do. It communicated with the FDA in an effort to come up with a plan to give Josh his life saving medication. A plan was put in place by the FDA and Chimerix to establish a new phase 3 clinical trial for children and to identify Josh as its first participant. On Tuesday evening, Josh’s parents were informed that the DRUG was on its way to Josh’s doctors at St. Jude. The grassroots social media campaign, coupled with the media exposure on television and print, was a roaring success.

“I learned Josh got the medications on social media. The news hadn’t even had time to travel through official channels. This just goes to show the power of social media when the people stand united,” shared Erica.

The Max Cure Foundation thanks all of its friends, supporters and those involved  as part of CAC2. Also we wish to send a special thank you to Facebook for being a huge part in changing from #SaveJosh to #SavedJosh. Because of its platform, millions of people had a voice in attempting to save Josh’s life. As of today, he has been saved!  When asked how she felt about going toe to toe with an industry, Erica stated, “Some people are saying we took down “big pharma”. That was never our intention. Our intention was to influence Chimerix to find a solution, which thanks to the FDA and Chimerix, they did.” We are pleased to announce that as of today, Josh’s condition is improving and it appears the drug, did in fact, save his life. But this story is ongoing, as this 7 year old continues to fight the infection that threatened to end his short life.

This story wasn’t just about a dying boy and the drug that could save his life. In the end, it was a victory for all of humanity. Not only for Josh and his family, but for pediatric cancer, children fighting illnesses who don’t have a voice, and this amazing drug that can offer such promise to the world. It was also a victory for the millions of people who were praying for a boy, who until Sunday, March 9TH, was a total stranger. “To think that a child who beat cancer 4x and survived, was going to die from an infection, even though there was a drug who could cure him, hit us hard. We kept thinking, what if this was Max? What would we do? We would fight, and get him the drug,” says David Plotkin, Chairman of Max Cure Foundation.

And that is the real power of the internet. One cause, over one million voices,  one bio tech company with a drug, along with the help of the FDA, were ultimately able to save one little boy’s life.