The Ethics of Crowdsourcing for MedicationAuthor: Portner & Shure
Is it right to demand experimental medication as a last-ditch effort to save a life? The parents of Joshua Hardy riled up supporters to demand a biotech company, Chimerix, to give Joshua their latest drug that was still in test trials. The young boy is a first-grader from Fredericksburg, VA who was fighting off a deadly infection that was caused by a recent bone-marrow transplant. Photos of Josh and his journey of fighting off cancer four times flooded the internet. Almost 200,000 supporters signed a petition for Josh to be allowed access to the drug through "compassionate use," which is a way for the drug to be given to a patient outside of trials. Hundreds of calls and emails were sent to Chimerix along with a buzz created through social media platforms like Twitter.
Eventually, the FDA allowed Josh to admitted into clinical trials with last-minute approval for a new clinical trial designed especially for pediatric patients. While Josh's supporters celebrate this win, many are critical of the way his friends and family cornered Chimerix into making the drug available. Others question why one child was allowed access to the drug while many other patients are left waiting for the drug to be released. The story ends well as Josh is seeing improvements in his condition, but I am left wondering what the consequences would have been had Josh experienced unforeseen side effects or exacerbated his frail state of health.