Breast Cancer Survivor Fran Visco: 20 Years After Diagnosis
September 2007 will be the twentieth anniversary of my breast cancer diagnosis. Like most of us who have heard the words "you have breast cancer", I found it difficult to imagine a future, yet here I am. And I constantly think about the fact that since my diagnosis more than 860,000 women and nearly 9,000 men have died of this disease - more people than the population of the city of San Francisco. Millions more have been diagnosed and undergone treatments that are highly toxic, many with long-lasting side effects.
I am an activist, always have been. Twenty years ago, I was shocked by my diagnosis. Why was I so uninformed about an issue that affected so many? I needed to know as much as I could about breast cancer. My diagnosis prompted me to start reading and talking to scientists, policy makers, doctors, and others who, like me, were reeling from the news of breast cancer. Where should I go for the truth? Why wasn't the country doing more to address this epidemic?
Fortunately, I was not alone in my outrage. I met a group of women comprised of breast cancer survivors and other advocates who were asking the same questions and figuring out how to get answers. We founded the National Breast Cancer Coalition, an organization that brings together hundreds of local, state and regional breast cancer groups under one umbrella to end breast cancer.
We knew we had to take action against breast cancer, not just for ourselves, but for our sisters, mothers, friends, and for future generations. We set out to change the systems of research, access to care and decisionmaking. We decided to lobby government and also to work within science and health care to effect change. We did our homework, figuring out what questions to ask, what demands to make, and how to be a contributing part of the answers.
We demanded the federal government increase funding for breast cancer research. We held our own scientific hearings to figure out what the right amount of funding should be, and we were successful. Since 1992 we have increased federal funding for research by $2 billion. We demanded access to the right information and taught ourselves how to analyze complex scientific and medical issues so we would know what information was important and correct. We demanded a say in treatment, not only for ourselves, but also for all those facing breast cancer.
Since 1991, the National Breast Cancer Coalition has trained advocates to lobby at the national, state and local levels for public policies that impact breast cancer research, diagnosis and treatment. Our grassroots advocacy involves member organizations and individual members from everywhere in the country. We are working for increased federal funding for breast cancer research and collaborating with the scientific community in order to create new models of research. We have gained access to high-quality health care and breast cancer clinical trials for all women with breast cancer (and men with breast cancer, too.) Through these efforts, we have expanded the influence of breast cancer advocates everywhere breast cancer decisions are made.
Our sister organization, the National Breast Cancer Coalition Fund, gives our advocates the scientific training and practical tools to fight for the eradication of breast cancer. Project LEAD®, NBCCF's flagship science course, has trained more than 1,300 activists. Graduates of all our programs are able to assume leadership roles and forcefully interact with legislative, scientific and clinical decisionmakers.
If you or someone you care about has been diagnosed with breast cancer, we have many resources to help. Our website contains materials to guide you through the maze of information about breast cancer. In addition to fact sheets and our analysis of scientific studies, we have developed NBCCF's Guide to Quality Breast Cancer Care to help with treatment decisions all along the way. Our website address is http://www.stopbreastcancer.org/. I hope that you will visit us.
I am grateful for this opportunity to tell you about NBCC's work and where the fight against breast cancer is headed. I am always eager to connect with other breast cancer survivors as well as their families and friends. I should warn you that this blog, as well as the work of NBCC, is not pink ribbon fluff for casual activists. NBCC is proud of its history of challenging the status quo, asking the tough questions, and, when necessary, taking unpopular stands when we know we are right. Pink is pretty. Breast cancer is not.
Take the National Breast Cancer Coalition's awareness quiz.