I came across an intriguing post on Pharmalot about a woman dying of Stage 4 breast cancer who used YouTube to plead with the Food and Drug Administration (FDA) to allow her access to pertuzumab, an investigational cancer drug. The video featured the woman, Diane Gant, reading several letters for her son, since she does not believe she will live long enough to see him grow up. Gant initially directed her plea to the FDA, but then learned that the ball is actually in Roche’s court, the pharma manufacturer of the investigational drug. A few days after uploading the video, Gant’s video gained the attention of Roche, and the company agreed to make pertuzumab available to Gant based on compassionate use.
While this mom’s story pulled at my heartstrings, it also got me thinking just how much social media really can change the game for patients. Gaining access to trial drugs through compassionate use is typically a long and arduous process. Usually, the patient’s doctor must contact the pharma company and then submit an application to the FDA for approval. For the FDA to even consider a compassionate use request, a patient must meet certain criteria, including that the disease is serious or immediately life-threatening, no treatment is available or approved treatments can’t help, and the drug company that manufactured must agree to provide the drug. Gant used social media to elevate her plea when she could not get access to the drug even after following the necessary processes.
Gant’s situation is certainly one-of-a-kind, and experts do not anticipate that her situation will change the way that patients get investigational drugs. However, I’m not so sure that this is true. This situation shows that pharma companies have an interest in engaging with their audiences in online communities. That said, pharma faces many obstacles in engaging with patients, which perhaps explains the experts’ hesitancy to view it as a game changer.
Pharma companies have deeply invested in online marketing, spending more than $1 billion last year, but when it comes to social media they have been cautious about their engagement. Many were hoping that the social media draft guidelines provided by the FDA late last year would provide guidance, but, unfortunately, the guidelines did little to clear the confusion. It will be interesting to see how the major pharma companies interpret these guidelines and to the extent that they will actively engage with patients online moving forward.
Do you think we’ll see a shift in how patients and pharmaceutical companies interact?