The public plea for a potentially lifesaving drug began with a mother’s Facebook post on a Thursday night.
That post, written March 6 by Aimee Hardy about her 7-year-old son Josh was shared 2,262 times.
Josh was fighting for his life at St. Jude Children’s Research Hospital in Memphis, Tenn., and after complications from a bone marrow transplant, developed an adenovirus that his weakened immune system was not weathering well.
But there was a glimmer of hope—an experimental anti-viral drug called brincindofovir, made by a small pharmaceutical company in Durham, N.C.
The only problem was that initially Josh’s doctors thought he could get the drug through a compassionate-use program, which is used for the treatment of seriously ill patients using a new, unapproved drug when no other treatments are available.
Drugs that are being tested but have not yet been approved by the U.S. Food and Drug Administration are called investigational drugs. These drugs are generally available only to people who are taking part in a clinical trial to test the drug.
Single-patient access can be granted by the manufacturer if the patient’s doctor requests it. Josh’s doctor made that request.
But Chimerix, the company that makes the drug, rejected the doctor’s request.
FAMILY PLEADS FOR HELP
So Aimee and her family turned to social media to build support for Josh, a four-time cancer survivor, and to put pressure on Chimerix.
“I can’t believe how much of a movement it became,” she said.
Aimee’s initial Facebook post was shared not only by friends and family, but also by several pediatric cancer organizations, which have thousands of followers of their own.
That night, Josh’s uncle, William Burns, posted a tweet on his personal Twitter account and ended it with #savejosh. When he woke up the next morning, there were lots of tweets with #savejosh.
He and several other members of Josh’s family, who live all over the country, then started a Facebook page—one they could all post on—to get the word out.
“We spread the message hoping it would go viral and bring a lot of attention to it,” Burns said in an interview.
He and other family members tweeted at every reporter, media outlet and celebrity they could think of to publicize Josh’s story.
And it worked.
“I think social media in this particular case created attention beyond just being a local story. It got attention locally, but it allowed them to reach a much bigger audience,” said Marcus Messner, assistant professor of journalism and the director for research and teaching for The Center for Media and Health at Virginia Commonwealth University.
Messner is also teaching a social media journalism class this semester.
Thousands of people tweeted at Chimerix’s Twitter handle in an attempt to get the company to release the drug.
The company also was flooded with emails, phone calls and faxes, but sharing on social media was a faster alternative.
“In social media, things move fairly quickly. Things that go viral, it doesn’t usually take a long time,” Messner said.
Messner said he wasn’t surprised that it spread so quickly across Facebook, Twitter and national media outlets.
“It has a very strong personal aspect, a human-interest aspect,” he said. “A family pleading with a company, it resonates with a lot of people.
“It’s a heartbreaking story. Anybody who has a child can relate to that story,” Messner said.
Kenneth Moch, the president and CEO of Chimerix, said he doesn’t fault Aimee and Todd for what they did. He said he would have done the same for his child.
MEDIA FRENZY BEGINS
The Free Lance–Star published a story about Josh on its fredericksburg.com website the afternoon of March 7. The story was promoted on fredericksburg.com’s Facebook page, which has more than 29,000 fans.
More than 12,000 people saw the post about Josh’s family’s plea for help.
Over the weekend, TV news crews in Washington and Richmond picked up the story. A Washington video crew covered a prayer service for Josh held that Sunday at the family’s church, Fairview Baptist in Fredericksburg.
Awareness of Josh’s story was growing, and CNN became the first national media outlet to air a report. Aimee Hardy appeared in a live interview on CNN that Sunday night with senior health correspondent Elizabeth Cohen and anchor Deb Feyerick.
If a petition on whitehouse.gov attracts 100,000 signatures, it is officially looked at by the White House.
The next morning, Monday, March 10, Aimee appeared on Fox’s morning show, “Fox & Friends.”
Immediately after that appearance, #savejosh shot up to the top 5 of trending topics on Twitter.
Momentum picked up from there.
Burns put some of the younger members of what he called Josh’s army to work on social media.
Josh’s brothers, Jack and Joe, tweeted at every sports figure they could think of to ask for support.
Washington Redskins quarterback Robert Griffin III, who has 1.12 million Twitter followers, saw the tweets and joined the #savejosh movement.
Josh’s warriors also contacted members of Congress on the boy’s behalf.
Rep. Rob Wittman, R–1st, who represents the Fredericksburg area, was the first to tweet his support. He spoke to the Hardy family and someone at the Food and Drug Administration.
Sen. Mark Warner, D–Va, sent letters to Chimerix and the FDA on Josh’s behalf.
In the letter to Chimerix’s Moch, Warner wrote, “As a former businessman, I understand many of the pressures you face running a company. However, I strongly believe that denying a child what very well may be the only potentially lifesaving treatment simply because it might potentially slow the approval process does not seem to be an adequate reason.”
CLOCK WAS TICKING
While support exploded for Josh online, the youngster’s health was deteriorating.
The adenovirus was taking its toll on his body, and with his weakened immune system, he couldn’t fight back.
Josh’s family members posted photos of Josh as the healthy boy he was before his most recent setback and, in a stark contrast, photos that showed a feeble Josh in his hospital bed at St. Jude.
The photos delivered a powerful message.
Meanwhile, Chimerix did not respond on social media.
“As a small company of 55 people, we were completely unprepared for the volume of social media and emails and phone calls we received,” Moch sad.
But when the pressure started mounting, that changed.
Moch was interviewed for news stories by some outlets, including The Free Lance–Star, but did not initially appear on camera on national television.
“Somebody in the company sees that something is brewing and they have to react to that,” said Messner, the VCU professor. “This is a classic case of an online crisis that the company had to respond to because they were getting negative national media attention.”
Moch said his company tried to respond through the media with a “consistent message.”
“This started on Thursday, growing on Friday night, it was in crescendo by Saturday, it was national on Sunday and global on Monday,” he added. “We didn’t have a crisis management team because we weren’t prepared for this type of crisis.”
The digital campaign for Josh was complemented by more traditional forms of support in the Fredericksburg community.
Foode, a downtown eatery, joined forces with the Fairy Godmother Project, Olde Towne Butcher, Lyon Bakery and U.S. Foods, to launch a letter-writing campaign to Chimerix. Foode gave away free “joshburgers” at the event, which resulted in more than 500 letters.
At Hugh Mercer Elementary School, where Josh is in the first grade, teachers and staff members planned a lobbying trip to Capitol Hill. They prepared a packet of information on his case and made appointments to see elected officials on Wednesday, March 12.
Other supporters also had planned to caravan down to Chimerix’s offices in North Carolina on Thursday.
But then, about 8 p.m. Tuesday, Chimerix made the stunning announcement that Josh would be getting the drug—along with 19 other patients as part of a new clinical trial.
Aimee Hardy received the good news while she was being interviewed on camera by CBS News. She burst into tears of joy.
Within minutes, the family spread the word on Twitter and Facebook. They thanked Chimerix and encouraged Josh’s supporters to do the same.
“Glory to GOD. They are releasing the drug to Josh!!!!!” Aimee wrote on her Facebook page.
A flurry of thank-you tweets to @chimerix followed.
The Hugh Mercer staffers turned their lobbying trip into a thank-you tour. The caravan to North Carolina was canceled.
A SYMPATHETIC STORY
Would the effort to save Josh have worked for anybody? And when Chimerix announced Tuesday night that it would release the medication to Josh, was it because of the social media pressure?
Messner said although anybody can start a social media campaign, there’s no certainty it will work.
He noted that Josh is a cute, sympathetic figure whom people could relate to. A different person with different circumstances might not draw widespread attention, he said.
Moch said that even as the social media campaign and news media reports about Josh multiplied, Chimerix was working with the FDA to find a solution.
He said that over the past six months, the company had been seeking federal approval to start an open-pilot study; Josh’s case just expedited things.
He said the company’s position actually never changed. He said he didn’t want to get the family’s hopes up by telling them a new trial was in the works.
Josh is part of a new trial. He did not receive the brincindofovir as a compassionate-use case.
“The availability of a new option is what allowed us to treat Josh,” Moch said.
However, Messner’s opinion is that the role of social media did play a role in the reversal of the decision.
“In this case, you can certainly say that what the parents did had a tremendous impact and were able to actually pressure a company to make that medication available,” he said.
Art Caplan, the head of the Division of Medical Ethics at New York University Medical School, agrees.
“I think it was a key factor. I think what’s changed as someone who’s watched this whole area of compassionate use and trying to get drugs to sick and dying people, the Internet has become the driver,” he said in an interview.
“Today you can get a sensation on the Internet. The media will respond to the Internet sensation. The Internet is driving the ability to plead, beg, go toe to toe with the company or doctor, for that matter.”
Josh’s supporters did just that. They tweeted directly at Chimerix.
Messner said that was a good strategy.
“It is actually a pretty good tactic to not only talk about the company, but to target them and contact them directly,” he said.
Robyn Sidersky 540/374-5413
MEDICINE HAS JOSH ‘HEADED IN RIGHT DIRECTION’
Josh Hardy’s condition continues to improve at St. Jude Children’s Research Hospital, his mother said in an interview Friday night.
“I think we’re headed in the right direction,” Aimee Hardy said.
Josh was expected to get his second dose of brincindofovir Saturday. She said he’s tolerated the medicine fairly well.
On Tuesday, the Fredericksburg family expects to have test results that could tell them how well the medicine is working to clear up the deadly adenovirus Josh has been battling.
His doctors are even talking about moving him out of the intensive care unit fairly soon. Aimee said she would like to see them move next week, but it depends on how Josh is doing.
Though he’s still groggy, he’s coming around, she said. He still has a lot of stomach pain right now, which is making him uncomfortable.
But his parents are working to lift his spirits. Aimee said she was getting him to chant, “I’m good as new. I’m good as new.”
Because he’s 7, he doesn’t understand completely everything that has happened.
“Anything we asked him to do, he was so courageous,” Aimee said. “It was incredible.”