Beverly Canin, Rhinebeck, NY
When I have diagnosed with breast cancer nearly ten years ago at the age of 66, I wanted simple answers and definitive solutions, as do most newly diagnosed cancer patients. I wasn’t prepared for the complexity of the disease and the need to personally gather as much information as possible before making treatment decisions. I quickly became aware that there were a vast number of issues that I didn’t understand and that there were many levels of interest and influence regarding breast cancer which went far beyond the doctor’s office. To help me navigate the immediate issues related to treatment, I turned to a support group at Benedictine Hospital in Kingston, NY and to Breast Cancer Options, an independent, Hudson Valley, grassroots survivor-driven breast cancer support, education, and advocacy organization. I became an advocate, primarily for individual patients.
Attending Project LEAD and the NBCC Advocacy Training Conference and Lobby Day in 2003 gave me the confidence to carry my advocacy to the levels of research and local, state and federal policy. My life has not been the same since. I have attended every Advocacy Training Conference except one since then, at times as a panel moderator. I have been a member of various NBCC committees, most recently the KnowBreastCancer.org committee. I have served several times as a peer reviewer and ad hoc integration panel member for the DOD Breast Cancer Research Program as well as consumer reviewer for the California Breast Cancer Research Program. I have attended numerous national cancer or breast cancer meetings, conferences, and symposia. I am an advocate member of the New York State Department of Health, Health Research Science Board and secretary of the New York State Breast Cancer Network, which received a 2006 NBCCF Best Practices in Advocacy Award. Committed to educating others about advocacy, I was privileged to accompany 16 select high school students to the 2010 NBCC Advocacy Training Conference and Lobby Day under an NBCC Advocacy in Action Grant awarded to Breast Cancer Options. I am currently vice president of BCO, having served 4 years as president.
NBCC has brought the voice of advocates to many tables, which have included clinicians and other healthcare providers, funders, researchers, policymakers and survivors, many of whom think they are voiceless and powerless. There have been many clear successes, such as annual funding for the DODBCRP, enactment of the Breast and Cervical Cancer Treatment Act, and enactment of the Access to Cancer Therapies Act, among others. There have also been disappointments, but NBCC advocates don’t give up. A network of energetic, dedicated, and knowledgeable men and women, they know that so much of the progress made over the last twenty years is directly attributable to consumer advocacy efforts and that it must be sustained until everyone has access to quality care and breast cancer is stopped.