This weekend breast cancer advocates, activists, researchers, educators, policy-makers, and other concerned citizens will be making their way to Washington DC to learn, connect, and transform at the National Breast Cancer Coalition’s Annual Advocacy Training Conference. This will be the 19th year that NBCC has hosted the conference, always with the goal of bringing together a diversity of people, ideas, and agendas to further the ultimate goal of eradicating breast cancer.
The issues and actions have changed over the years to address the specific needs, but this year brings a new era of breast cancer advocacy. The NBCC represents a part of the breast cancer movement that is willing to take a reflexive stance about its activities; to discern what works, what doesn’t, and what needs to change. Such introspection is not easy especially for large organizations. Still, NBCC with hundreds of diverse member organizations is attempting to do just that.
NBCC president Fran Visco recently made the point on Huffington Post that the eradication of breast cancer requires us to remember where we’ve been, envision where we need to go, and map out what it will take to get there. She said,
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.
Frustrated. That’s one word to describe it. I’d add: disheartened, infuriated, confused, and disgusted. Billions of dollars. Screenings and medical interventions. An abundance of awareness activities. A plethora of good will. More pink than anyone would ever know what to do with. And things haven’t changed all that much? How can this be?
Last September (2010) the NBCC released a white paper to explain where progress to eradicate breast cancer has lagged behind and what got in the way. Drawing together statistics and information from widely respected sources, the paper specifies that incidence rates continue to rise; advances in treatment are incremental at best; and, although our understanding of breast cancer has increased in the past forty years, little has changed for many of the diagnosed. In addition, what has changed can sometimes be more harmful than beneficial. 1 The NBCC white paper accompanied a new plan of action to end breast cancer in ten years - Breast Cancer Deadline 2020®. According to the executive summary, this does not mean that breast cancer won’t exist in January 2020 but that we’ll be much farther along in knowing how to prevent the disease and how to reduce mortality.
A key component of NBCC’s plan to change breast cancer related outcomes is to change the conversation surrounding the disease. To date much of that conversation has focused on campaigns to “raise awareness,” expand screening programs, increase fundraising for the cause, and conduct treatment-related research. Thirty years ago this conversation was necessary. But it’s efficacy has leveled off. People know about breast cancer. Screening programs have been routinely adopted and there are numerous programs to provide it despite the limitations of the technology. More than 1400 organizations are dedicated to the cause of breast cancer, and billions are raised every year. Yet deaths hover around 40,000 per year. Still. Stage IV metastasis is the leading cause of death for that group. Still. And if we remain stuck in this conversation, breast cancer incidence rates will continue to rise, recurrences will remain at around 30%, and the mortality rate will hold steady just where it is. If we hold onto the same conversation we’ve been having for the past 25 years, the dream of eradication will remain a dream.
To accomplish the 2020 mission NBCC will need to galvanize widespread support across diverse constituencies. Despite the ubiquity of pink campaigns and a seeming desire to keep the conversation from shifting at all, NBCC is not alone in questioning the current state of affairs. Individuals and organizations in public health and across the breast cancer advocacy community have raised questions about breast cancer research and advocacy, the strategies used, and the limitations of the ongoing war. 2 To create a strong coalition for change, NBCC will need to stay reflexive in its approach, open to modification when needed, responsive to constituent groups, and focused on valid indicators and actionable goals.
I believe the organization can do this. The strategic plan has built-in processes for systematic and continuous evaluation.
I believe it’s time for a change. You’ll find me at the Annual conference with a panel of people focusing on how to change the conversation through social media.
Blogging, Tweeting and Being Linked In (Monday, May 2, 2:15pm – 3:45pm)
Whether you’re blogging, tweeting or updating your status on Facebook, being linked in helps affect change—as long as the message is on target. Social media is a catalyzing tool for all ages and “techKnowledgy” levels that helps change the conversation. Be part of the shifting conversation online about breast cancer and help us spread the word—breast cancer ends January 1, 2020.
Moderator: Courtney Bugler, The Young Survival Coalition.
Speakers: Geoff Livingston, Zoetica; Alan Rosenblatt, MA, PhD, Center for American Progress; Gayle Sulik, PhD, University of Albany.
I’ll offer my reports following the conference. In the meantime, check out the program. And if you’re attending the conference, be sure to come by and say hello!