The Puzzle Project: Factsheet
The Challenge: Breast cancer is a complicated puzzle. The time, energy, and multiple billions of dollars spent trying to solve this puzzle have given us plenty of pieces that will be central to understanding and solving it. But the solution won't be found unless we have a coordinated and adequately funded effort to put the pieces together.
The Imperative: Over two million U.S. women are living with breast cancer. A woman's lifetime risk of the disease has increased to 1 in 7. And far too many of us are dying from this disease. Exactly why, how, or what can be done to stop it are still largely unknown, though a great deal of research has provided useful pieces of information. The time for bringing these pieces together is long overdue. We need to reclaim the research agenda from a hypothesis-driven model to an outcome-driven model that puts women's lives first.
Current Climate: At the federal level alone, a number of agencies are funding breast cancer research, including the National Cancer Institute (NCI), the Centers for Disease Control and Prevention, the Department of Defense, the Department of Energy, and the National Institute of Environmental Health Sciences. Many states have their own research programs and there are a number of private agencies—from the American Cancer Society to the Susan G. Komen Foundation to the Breast Cancer Research Foundation—that also fund research. Additional funds come from the pink ribbon cause-marketing campaigns of companies like Avon, Revlon and Estée Lauder. Finally, pharmaceutical companies are engaged in breast cancer research as well. No one knows how much is spent each year on breast cancer research. And while research is conducted at many, many places, some under the direction of the NCI, no coordination exists among these funding sources and research centers.
The Problem: For all this funding and research, the fact remains that most women diagnosed with breast cancer today face essentially the same treatment options—surgery, radiation and chemotherapy—that were offered when the War on Cancer was first declared nearly thirty years ago. While there have been some improvements in each of these types of treatment, they have been small, especially when compared to the amount of money we've invested. When it comes to prevention, the only options available are powerful pills with dangerous side effects, and drastic surgery. All of the approaches to "prevention" promoted by the media and research institutions are actually risk reduction measures, not real prevention. Many of these interventions lead to new diseases, resulting in disease substitution rather than breast cancer prevention. One reason for the very slow progress is that research is currently based in a hypothesis-driven model, in which well-meaning and dedicated scientists and doctors pose the questions, rather than the public.
What's Needed: A coordinated, adequately funded approach to breast cancer research, with the ultimate goals of understanding the causes of breast cancer and the reasons for different incidence and mortality rates among different racial and ethnic groups, and discovering more effective, less toxic treatments. Outcome-driven research, in which the researchers look for answers to these types of questions of most concern to the affected community, is necessary to achieve our goals. As a new approach to the standard scientific model, outcome-driven research frames the hypothesis to get the answers we need to important public health questions.
Central Issues:
- Who needs treatment and who doesn’t: which “breast cancers” will never become life threatening?
- How can we more effectively and less toxically treat metastatic disease and how can we prevent aggressive breast cancers from becoming metastatic?
- What scientific tools can be developed that will help make the link between information about environmental exposures and health-outcome data?
- Why do different racial and ethnic groups have different breast cancer incidence and mortality rates, and what can be done to successfully address those differences?
A Better Model: Getting the answers to these questions will require scientists to address them, as well as new funding mechanisms. Enter the Breast Cancer Puzzle Project.
The proposed model would allocate all the money now devoted to breast cancer research to several research centers around the country. The staffs of the centers would represent a wide range of disciplines. These centers would focus on finding answers to central questions regarding who needs treatment and who doesn't, which "breast cancers" will never become life threatening, and identifying ways to determine and best treat metastatic and less aggressive breast cancers, what developing scientific tools that will help make the link between information about environmental exposures and health-outcome date, and why there are discrepancies of breast cancer rates and mortality among racial and ethnic groups. They would be fully funded until one or more of them produced answers to these questions.
Activists will play a key role in the Breast Cancer Puzzle Project research model, helping to determine what gets studied, and how. Ultimately, the Puzzle Project's impact will be felt through the implementation of research results, including better health and medical policy that will allow everyone access to improved treatments and better health outcomes so that, in the end, fewer and fewer women's lives are affected or claimed by this disease.