Interesting. At last year's annual NBCC I was an attendee. I felt very much alone as a Stage IV warrior. My greatest concerns were different from the majority of attendees. I went to the NBCC Comparative Effectiveness Presentation hosted by Sean Tunis MD.
The concerns that I expressed were in two categories - A). Over half of the chemos that had worked on me to beat back breast cancer were not approved for Breast Cancer. What if there isn't any data that proves / confirms what is already working? B). Trials for heavily pretreated patients like me. How could I get into trials to stay alive when trials wouldn't accept me or were closed? He mentioned expanded access and compassionate care... He also said that groups could be formed to study and gather data so that people like me could get treatment (sounds like what Joe mentioned). This came up when I mentioned that over 100 women had applied and had not made it into a TDM1 trial that filled up quickly.
I was finally able to get into a TDM1 trial but found all of the other options to be straw man options. They sound comforting until you reach for them and find out that in each situation there is are very valid reasons one of the parties that needs to be involved in the solution can't. Everyone feels just awful about this... terrible... but only one dies waiting and hoping.
This is Sean's information and he seemed very informative and nice. As I said during my ramblings he was the featured speaker at the NBCC conference in DC last year so I am assuming that this organization might also be involved in these sorts of issues.
Sean Tunis MD, MSc
Director, Center for Medical Technology Policy
www.cmtpnet.org
This topic makes me ill and scared out of my mind. Carolyn