Saturday, December 13, 2008
Allison Young, Program Associate
I have been working at BCA for almost two years now, but this was my first time attending SABCS. It was also my first time at pharma-sponsored advocacy luncheons. I expected to eat, hear the spiel about whatever drug they are currently most excited about, and watch Barbara ask some really pointed questions.
Genentech started off with a feel-good video about their relationship with patient advocates, some of whom were in the room. But all this high-priced PR seemed to fall by the wayside during the presentation when the scientist said, “We use progression-free survival as a marker because we find it meaningful” and the advocates, one by one, responded, “Well, we think our overall survival is what’s really meaningful.”
I anticipated a similar scenario at the Novartis luncheon, but I got the impression that Novartis had misjudged the audience and its realities. These are women living with breast cancer attending a scientific conference, and while there were varying degrees of pink ribbon fashion in the room, everyone was hungry for good information. They quickly bristled at the celebrity actress talking about how convenient it was to have 28-day infusions while traveling freely around North America, or the suggestion they brush their teeth more often to prevent dental side effects caused by Zometa (zoledronic acid). The advocates represent patients across the country who might have HMOs or no insurance at all, who were not given full and accurate information about potential side effects before taking Zometa, and who have a really hard time getting their team of doctors to work together: “I can’t get my surgeon to talk to my oncologist, and you want me to get my oncologist to talk to my dentist?” Ms. Gelb asked.
At SABCS, I tabled with two wonderful volunteers and got to know their personal experiences with breast cancer, and I did my best to make sense of the posters, graphs, medical terminology and high-tech pharmaceutical exhibits.
The day before I left for San Antonio, I received a call from a BCA member who had osteonecrosis of the jaw from taking zoledronic acid. And I know that as soon as I’m back in San Francisco, I’ll still be talking to women who are living the reality of breast cancer, minus the free lunch.