For over 30 years at The People’s Pharmacy, we have been guided by a respect for people’s ability to make informed decisions about their health. We have always welcomed input from consumers, but we had viewed our website as an information dissemination system: we posted articles and readers posted comments. That was the extent of the interactivity. We had never used the site as a beacon of e-patient activity – until now.
E-patients have recently drawn national attention by documenting significant problems with a generic drug – problems that the FDA hadn’t caught. …
In February 2007 we began receiving emails about Budeprion XL 300 (a generic formulation of bupropion, meant as a substitute for Wellbutrin XL 300). We opened a portal on our website, asking for people to write to us about problems with generic drugs, and that was when the power of e-patients became overwhelmingly apparent. Almost from Day 1, people started flocking to us, sometimes finding the site in the dark of night, during a desperate search for answers about why their depression had come flooding back. In reading other e-patients’ stories on our site, they realized that the generic drug might be the reason for their suicidal thoughts, not some fatal flaw within their own heads.
All of a sudden we had a powerful tool – e-patient testimony – which we then used as a lever to get the FDA to focus on this particular drug. You see, source information has always been obscured in generic drug manufacturing. A generic drug might come from one of twenty sources, all competing on the same field, making it nearly impossible for a consumer to track. This time a manufacturer beat everyone to the market and thought it would be a coup to capture the market by using a unique name. It backfired because people were able to identify the manufacturer when problems developed. (Please read Melinda Beck’s article in the Wall Street Journal for the full story on Budeprion XL 300.)
E-patients were able to identify the specific drug, post their stories online, and shake the foundations of power.