Karen Addis, APR, is senior vice president at Van Eperen & Company, a full-service public relations and marketing communications agency in the Washington, D.C., area, where she specializes in healthcare communications. You can contact her at firstname.lastname@example.org.You can also follow her on Twitter or connect with her on LinkedIn.
Until a few weeks ago, few people outside of the small town of Fredericksburg, Va., had heard of Josh Hardy, a 7-year-old who had been suffering from various forms of cancer since he was nine months old.
But all that changed in early March when his mom used social media to draw public attention to her son’s story, which recently had taken a turn for the worse. Josh had been in the hospital recovering from a bone marrow transplant when he developed a serious infection. He most likely was going to die if he did not receive the experimental drug brincidofovir, which had been shown in clinical trials to clear up adenovirus infections in children.
Earlier, Chimerix, the maker of the antiviral, had denied the Hardy’s request to receive the medication. The company said that if it provided brincidofovir to Josh, it also would have to make the drug available to other patients it had previously denied. Doing so, they said, would put the company in financial jeopardy and could delay the FDA approval process.
The story instantly went viral, and traditional media soon followed, with news reports airing on CNN, Fox News, and CBS, among others. Within days, the North Carolina biotech company reversed its decision and agreed to make brincidofovir available.
Aimee Hardy did what any mother would do: She fought to save her son’s life. And she was
strategic in her approach, capitalizing on the immense power of social media to spread the word about her son’s plight. She used the modern-day version of old-fashioned grassroots lobbying to put pressure on people who had the power to initiate change, Chimerix’s CEO and the FDA.
Within days of taking brincidofovir, Josh’s condition had improved remarkably.
But the case has raised a host of legal and ethical debates. Some think it sets a dangerous precedent, enabling the most vocal people who lobby their case successfully to bypass the system and get preferential access to drugs that have yet to be approved.
What about struggling biotech/pharmaceutical companies that are in the experimental phases of trying to develop a life-saving drug and get pressured to give access to so many “compassionate use” cases that they are pushed into bankruptcy?
And finally―and perhaps the biggest question of all—what if something had gone wrong? In an effort to help one young individual, as heart-wrenching as the situation is, the larger population pays the price if something goes awry outside of the clinical trial process and the FDA has to investigate. The already lengthy approval process to bring drugs to market is slowed down even further.
Only time will tell whether Chimerix made the right call. From a business standpoint, the decision was a home run: The company’s stock shot up, and the company garnered a great deal of positive media.
From a mom’s point of view, Josh is alive today because she was able to successfully tap into the power of social media to obtain access to an experimental drug that saved her son’s life.