At the end of this month, nearly a thousand women will come to Washington DC to participate in the National Breast Cancer Coalition's 19th Annual Advocacy Training Conference. The theme this year is "Changing the Conversation" as we aim to focus efforts within the breast cancer community on a common goal of ending the disease by January 1, 2020.
It was almost exactly 20 years ago that I received an invitation to a meeting in Washington, DC that was also to talk about a new approach in breast cancer. In May 1991, I was one of about 60 women (and one man) gathered to hear about an idea: a coalition of organizations to focus on political advocacy and systems change in breast cancer. I have often described that meeting as my epiphany. I found what I wanted to do about my diagnosis of breast cancer.
In September 1987, I was a partner in a law firm in Philadelphia, a wife and mother of a 14-month-old son. I was a community volunteer, involved in women's rights issues, sitting on nonprofit boards, working in political campaigns. I was 39 years old. And I found out I had breast cancer. It came as quite a shock. I knew nothing about the disease -- I didn't think I had to know, mistakenly believing that my lack of family history made this a nonissue in my life. I went through a lumpectomy, radiation, chemotherapy because of lymph node involvement. I began volunteering with the Linda Creed Breast Cancer Foundation in Philadelphia and joined their board. They do the very important work of educating the community and helping underserved women get information and care. But I am an activist. I needed to do more. Hence, the epiphany that day in May.
I sat among a group of women who decided to take on the status quo, challenge the establishment, demand change. They were ready to learn about the issues and then speak out. I felt right at home. And I knew I had to be a part of that community.
We built an organization different from any other: bringing under one umbrella hundreds of diverse groups, with distinct perspectives, beliefs, approaches. These organizations were different in every way except one: we were all dedicated to ending breast cancer. And we were willing to do what was necessary to achieve it. So much of what we have done over the past twenty years has been controversial, but it has been remarkably meaningful.
I am most proud of maintaining this diverse coalition for so many years and keeping us focused on our mission. We began to build our network of advocates through various campaigns. Our first, just months after that organizing meeting, was called Do the Write Thing. Its goal was 175,000 letters to Congress. In an extraordinary demonstration of NBCC's grassroots power, we delivered 600,000 letters and successfully increased federal funding of breast cancer research by 50 percent over the prior year. Our $300 Million More campaign in 1992 engaged thousands of advocates, bringing many of them by the busload to Washington to lobby their elected officials, resulting in the launch of the Department of Defense Breast Cancer Research Program and a 300 percent increase in federal funding for research.
A year later, through our expanded network and strengthened efforts, we gathered 2.6 million signatures (one for each woman living in the U.S. with breast cancer at that time) leading to the creation by President Clinton of a National Action Plan on Breast Cancer. That same year, we established our Annual Advocacy Training Conference to train people to become informed, active and effective advocates; to push for quality care, meaningful research and health care access; and to better serve their communities.
Through these endeavors, and others like Project LEAD®, our Clinical Trials Initiative, the Guide to Quality Breast Cancer Care, and KnowBreastCancer.org, we have shared the facts about breast cancer throughout the community, trained thousands of women and men, catalyzed systems change, and grown our coalition of organizations and individuals.
But it was never about just building a coalition, it is what that coalition could accomplish. You see, I am also so very proud of the fact that we educated, trained and empowered these women and men from across the country -- and even other countries -- and gave them a seat at the table to make a real difference in breast cancer.
What have we accomplished in 20 years? We brought about more money for breast cancer research than any other organization -- more than $2.5 billion -- through our advocacy that created and maintained the DOD Breast Cancer Research Program. We took on the issue of government funding for screening but not treatment of underserved women. That advocacy led to the creation of a system of access to health care for thousands of uninsured women through our design and successful enactment of the CDC Breast and Cervical Cancer Treatment Act. We made certain we could oversee how research dollars were spent by creating innovative science-based training programs for lay advocates. We collaborated with scientists to change the way breast cancer research is done through the development of new models of research, through our work on innovative clinical trials and our push for meaningful results. We made breast cancer an issue of national significance through our informed advocacy on Capitol Hill and in state legislatures.
We should all be very proud of our accomplishments. And frustrated. Despite the billions of dollars for research and care and thousands of advocates pushing for meaningful progress, things have not changed all that much.
That is what brought us to Breast Cancer Deadline 2020®, a deadline and strategic plan of action to end breast cancer by January 1, 2020. Twenty years after our founding, we know we must take all of our accomplishments, all that we have learned about the disease, all the technology and tools we have helped develop, and focus on ending breast cancer by the end of the decade.
What do we mean by ending breast cancer? Knowing how to prevent it and knowing how to prevent people from dying of it. The majority of breast cancer research in this country and abroad is focused on finding the next treatment drug; we are focused on two issues:
- Determining the causes of and how to prevent breast cancer metastasis
- Preventing the disease from developing in the first place
These are not just words. We have a plan, and that plan is now being implemented. I hope you will read our Executive Summary to learn more about the details.
In January 2020, my son will be 33 years old. It will be 31 years since my diagnosis. Almost 30 years since we founded NBCC. I want to be able to say that we accomplished what we set out to do in May 1991, in that conference room in Washington ... the end of breast cancer.
Breast Cancer Deadline 2020®. The end of breast cancer by January 1, 2020. Are you with us?
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