Musa Mayer offers her report on Day One: "To my mind, this year's conference represents a watershed for breast cancer advocacy. For the first time, the invited opening speech was given by Fran Visco, president of the National Breast Cancer Coalition, which currently boasts 600 member organizations, and over 60,000 individual members. For those unfamiliar with NBCC, see www.stopbreastcancer.org In the context of yesterday's New York Times mammography piece, it's never been more clear that an important role of advocacy is that of challenging long held assumptions. "Existing assumptions reward the status quo," was how Fran expressed the frustration we all feel with the slowness of change. NBCC has not been afraid to be unpopular in some circles, shining a light on research findings that threaten to unseat the status quo, on such controversial issues as high-dose chemotherapy with stem-cell transplant, breast self examination, and mammography. In her talk, Fran went on to detail the ways in which NBCC's work over the last decade has fostered clinical and translational research, first and formost by bringing in over one BILLION new research dollars through the Department of Defense Breast Cancer Research Program, dedicated to innovation and new ideas, and with advocate involvement at every level. Fran spoke about the NBCC's Clinical Trials Project, which has been endorsing selected trials, assisting with enrollment, and insisting on meaningful consumer input, pairing trained advocates with the scientific community. NBCC's criteria for these trials is high: they must be well designed, with appropriate and meaningful outcomes. They must cover patient care costs and be designed in an ethical manner. Advocates must be able to have a meaningful input, and receive updates on trial progress, status and results, even if the trial is cancelled or ends early. NBCC participated in the pivotal trial on Herceptin, and more recently on the Theratope and Avastin trials--greatly accelerating accrual. NBCC has started work on publicizing the large BCIRG adjuvant Herceptin trial. Fran quoted a Patient Care Journal study that said that only 20% of medical practices are based on rigorous research evidence,and said that our goal first and foremost is to save lives, by fostering evidence-based decision making. Our goal is to end breast cancer through a global, overarching approach in which we inform women to critically analyze information, make decisions with their doctors, and feel empowered to challenge assumptions. I don't know if I can adequately convey how it felt to sit in that huge audience today and hear these words spoken. I wanted to stand up and cheer!" "Advanced Breast Cancer: A Guide to Living with Metastatic Disease," by Musa Mayer, copyright 1998, published by Patient-Centered Guides, Sebastopol, CA. For more information, please call 1-800-998-9938 or visit www.patientcenters.com/breastcancer LINK LINK Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.