This Essay was originally published February 10, 2011. It is as timely in October as it was then.
The thought of eliminating the scourge of breast cancer is enough to ignite the passion and open the wallets of millions of concerned citizens. Every year people walk, run, volunteer, and consume products with that end in mind, raising billions of dollars to support the cause and the dream. The dream fuels hope and expectation that society is progressing toward that day when the dream of eradication is a definitive reality. What would that day look like?
Simply stated, the eradication of breast cancer would mean that: (1) most people would avoid getting breast cancer in the first place, and (2) those who did get the disease by chance would have access to interventions that significantly reduced or eliminated symptoms, side effects, disease progression, recurrence, and breast cancer mortality. Based on trends in incidence and mortality over the last several decades, eradication is a tall order.
In 2006, there were approximately 2.5 million women living in the United States who had a history of breast cancer diagnosis. In 2009, the American Cancer Society estimated over 192 thousand new cases of breast cancer among women and 1900 new cases in men, along with over 40 thousand deaths. Although 80 percent of new cases were in women over age fifty, a growing number were diagnosed at earlier ages. Nearly 33,000 newly diagnosed women in 2008 were under the age of forty-five. The National Cancer Institute reports that mortality rates for invasive breast cancer have improved from a rate of about 31 deaths per 100,000 people in 1975 to about 23 deaths per 100,000 in 2007. Over a span of 32 years, that’s eight fewer deaths per 100,000 people. These data do not support the premise that society is on a path toward eradication. Instead, they suggest that the dream of eradication is a very distant reality at best and an utterly unimaginable one at worst.
Some dreams are like this. It doesn’t mean we should stop dreaming. Unless there is a miracle, however, realizing any dream (plausible or not) remains an unlikely scenario without the right conditions. Most dreams become possible only when they have clearly defined goals, aligned actions, valid indicators of progress, systematic and continuous evaluation, and a flexibility when evidence suggests needed change. The multi-billion-dollar question is whether the dream of breast cancer eradication has any chance of moving from the imaginary realm at all. The National Breast Cancer Coalition takes this question seriously. In fact, the organization refined and refocused the dream of eradication into a bold campaign, The Breast Cancer Deadline 2020.
Since its founding in 1991 the NBCC organized its activities around three major goals oriented to an eradication agenda. These involved promoting research into the causes of breast cancer and the most optimal preventive and treatment interventions; improving access to quality care through legislation and changes in health care delivery systems; and increasing the informed involvement and influence of health activists and those living with breast cancer. Though these goals were consistent over the years and gains achieved, the 2020 Deadline marked a major change in the conversation about whether the dream of eradicating breast cancer was really possible given the evidence. The answer, as the NBCC outlined last September in a White Paper, was an unequivocal no. Early approaches to breast cancer advocacy had their place, but the time for a new strategy was overdue especially if eradication was truly the goal.
The 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. Yes, people know about breast cancer. A sea of pink fills grocery stores and shrouds buildings from Wall Street to the White House. Consumers and volunteers raise a lot of money for the cause, and the culture focuses utmost attention to celebratory stories of hope, courage, and triumph. Prevention is cast in terms of modifiable risk factors that do not account for the vast majority of diagnoses. Advertisements enforce screening mammography as the best weapon against breast cancer, and many women comply despite high rates of false positives, false negatives, and overtreatment. Medical professionals routinely treat pre-cancers like invasive ones with the hope that these measures will reduce future risk. Researchers make incremental advancements while medical treatments poison the body sometimes in lethal doses in an attempt to keep this emperor of all maladies at bay. Regrettably, these efforts have not resulted in the eradication of breast cancer, and there is no reason to believe they will do so in the future.
Despite this reality, The Breast Cancer Deadline 2020 does not give up on the dream. It does, however, draw a line in the sand. Setting 2020 as a ten-year goal for making the dream of eradication possible is a plea to change how society thinks and talks about breast cancer, to focus research, and to measure success with valid, evidence-based indicators. In addition to working with the new Congress, securing federal funding, and engaging the grassroots, NBCC is “bringing together researchers, scientists, advocates and other stakeholders for two strategic summits in 2011, each centered on a primary area of focus for ending breast cancer: (1) how to stop breast cancer metastasis; and (2) how to prevent the disease from developing.” NBCC argues strongly that without serious change in “business as usual” another ten years will roll by before we know it, and the breast cancer epidemic will continue right along with it.
In a strong statement, NBCC President Fran Visco states:
“We have no desire to increase awareness of breast cancer, or to continually increase funding for research. Indeed, our foremost goal is to bring about the demise of the organization by accomplishing its mission.”
The Deadline 2020 is a strategy for giving shape and texture to the dream of eradication so that it has a fighting chance of being realized. This is not some utopian vision of a disease free world. There will always be cancers in our midst. Cancer has been part of the human condition for centuries, perhaps even part of human beings’ genetic makeup as Siddhartha Mukherjee argues. The dream of eradication is about eliminating the epidemic. It is about significantly reducing the incidence and recurrence of breast cancer and giving those who are diagnosed the best possible chance of living long, healthful lives. It is a dream worth having even it is not known whether, or when, the dream will be realized. But like any dream, it is only viable if it contains actionable goals, valid indicators of progress, systematic and continuous evaluation, and flexibility to change course when needed. Without these key elements the dream will remain a dream.
I imagine a day when pink is no longer associated with breast cancer. When ribbons adorn gifts instead of promotional materials. When disease is no longer cause for celebration, publicity, and revenue-production. When hard-earned money raised for a cure actually goes to research that saves lives. When compassionate critique opens the pathway for change. When evidence informs action and the legendary Hippocratic promise to “first, do no harm,” lives and breathes in every public policy decision. I imagine.
See NBCC’s website for more information on The Breast Cancer Deadline 2020.
NBCC also offers education and training programs through The Center for NBCC Advocacy Training, which has courses and workshops to give participants tools needed to understand and influence scientific and policy decision-making around critical issues in breast cancer.
LEAD workshop students study the fundamental biological concepts underlying breast cancer, research methods, and ways to better assess medical reporting in the popular press. Sign up for the next two-day workshop now.
Mark the date in your calendar now, May 5—8, 2012. You won’t want to miss this!
The Project LEAD workshop is a two-day training program for advocates interested in an introductory education in the science of breast cancer.
This intensive six-day course studies the biology of breast cancer, genetics, epidemiology, research design and advocacy. Registration for the July 17-22 session in San Diego is now closed. Dates for the 2012 session will be announced soon.
This four-day course teaches breast cancer advocates how to improve the quality of health care for everyone through systems change. The course is offered once every other year. We will announce the 2012 dates soon.
This four-day advanced course for Project LEAD Institute graduates only focuses on understanding and improving breast cancer clinical trials research. The course is offered once every other year. We will announce the 2012 dates soon.
International Project LEAD covers the basics of cancer biology, genetics, epidemiology, research design and advocacy, with an emphasis on global clinical trials. The course is offered annually. We will announce the 2012 dates soon.
NBCC offers a variety of opportunities LEAD graduates may take advantage of to continue their advocate education. Check them out now!
The Project LEAD Workshop is an introductory level, two-and-a-half day course, open to all NBCC members interested in learning the basic biological concepts of breast cancer, the fundamentals of research design, and the skills to be critical readers of the breast cancer science in the media every day.