National Breast Cancer Coalition National Breast Cancer Coalition Fund 2005 ANNUAL REPORT SAY IT. FIGHT IT. CURE IT. STOP IT. NAtiONAL BREASt CAncER COALitiON NATIONAL BREAST CANCER COALITION FUND The National Breast Cancer Coalition is a grassroots membership organization dedicated to ending breast cancer through the power of action and advocacy. Along with its research and education arm the National Breast Cancer Coalition Fund, the Coalition’s main goals are to increase federal funding for breast cancer research; improve access to high-quality health care and breast cancer clinical trials for all women; and expand the influence of breast cancer advocates wherever breast cancer decisions are made. Please visit www.stopbreastcancer.org for more information. Dear Supporter: Power. Powerful. In 2005, NBCCF once again demonstrated what a powerful, committed group of trained advocates can do. We used the power of advocacy—patient- centered, evidence-based activism—to continue to revolutionize breast cancer research and access to care. And it is your support, your energy, your counsel, that provides the incredible strength we need to achieve our mission. Your support gave us the power to reach out to opinion leaders and the media to keep the American public from drowning in the rhetoric of breast cancer awareness. We seem as a nation to be losing sight of the fact that 3 million women and several thousand men are living with this disease—and that more than 40,000 women died in the year 2005 alone. It is so important that we not get complacent, even as we celebrate a measure of progress in research and treatment. And, as you will read in this report, our collective power got results. In spite of intense pressure to cut the federal budget, we were able to achieve a significant level of funding for the innovative Department of Defense Breast Cancer Research Program we spearheaded more than 10 years ago. NBCCF also took the lead in the promising new arena of biomarker research, convening a group of world-renowned experts to make sure that researchers focus on areas that will quickly prove useful to women with breast cancer. Hundreds of women and men attended our Annual Advocacy Training Conference with generous scholarship funding—and most stayed for an NBCC Lobby Day on Capitol Hill that included more than 420 visits with members of Congress and their key staff. And this year, thanks especially to a major outreach campaign in Latino communities, our Quality Care Initiative helped increase access to the best breast cancer treatment for everyone in this country. A new source of NBCCF power comes thanks to former President Bill Clinton. He joined us at our annual New York gala to launch a new program within NBCCF, the Virginia Clinton Kelley Fund, in honor of his mother who died of breast cancer while he was in office. This innovative fund honors a strong, courageous woman, and will enable us to expand the bold strategies and creative approaches to ending this disease that have been our hallmark since our founding in 1991. As we continue to lead a grassroots revolution in the world of breast cancer, I want to thank you for your support and the power it gives us to makes this non-stop, grueling, strategic, relentless work possible. We simply could not survive without you and your personal commitment to our mission—ending breast cancer, once and for all. Be well. Fran Visco President RESEARCH REVOLUTION IS NOT A ONE-TIME where such a diversity of scientific EVENT, and the need for revolution disciplines—basic scientists, clinicians, in breast cancer research, one of the epidemiologists, nano-technologists, core reasons for NBCCF’s founding in mathematicians, physicists and more— 1991, takes enormous effort, focus and come together on an equal footing with courage. We were then, and remain consumers to look at the complexity now, focused on changing the prevailing of breast cancer research, challenge system of incremental, safe research that each other, explore controversial issues has more often than not produced little and learn and plan together. Thanks meaningful impact on women’s health. to NBCCF’s efforts, consumers play key roles in every aspect of the Era of The Department of Defense Breast Hope meeting. At the 2005 Era of Hope, Cancer Research Program is a direct controversial issues were confronted result of our 1992 campaign to head-on, and everyone was challenged dramatically increase federal funding to think in new ways. specifically targeted to innovative, multi-disciplinary, high-impact breast cancer research. It created and fosters an Biomarker Research unprecedented partnership that unites The use of biomarkers—measurable the military, scientific, medical and cellular or subcellular materials that breast cancer survivor and advocacy demonstrate the presence of malignancy communities to develop and carry or predict tumor behavior—is an area out research to end breast cancer. It is of promising research, and NBCCF once the federal government’s only breast again demonstrated its leadership by cancer research program that involves convening in November 2005 a Strategic consumer advocates at both the scientific Consensus Conference: Shaping the peer review and the programmatic Future of Biomarker Research to Ensure review stages, and it serves as a model of Clinical Relevance. transparency and accountability for all government programs. NBCCF trained advocates are highly engaged in every aspect of the DOD program. We are there to make certain that hard-fought research Thanks to NBCCF’s efforts, consumers dollars are well spent on important questions that will produce the answers play key roles in every aspect of the women with breast cancer as well as Era of Hope meeting. their families and friends demand and deserve. Assembling a group of world-renowned Era of Hope researchers from government and An important part of the DOD initiative academia, FDA regulators, consumers, is the Era of Hope, a meeting designed clinicians and industry representatives, to report to the public on the research we focused on how biomarkers can be funded by the program. There may be no most useful in diagnosing and treating other forum in the scientific community women with breast cancer. Results natiONAL BREAST CANCER COALITION FUND Carolina Hinestrosa, NBCCF executive vice president, programs and planning Behind the Headlines The American public hears about important research chiefly through the popular media. Unfortunately, were beyond our expectations: a set of news articles sometimes include hype, five principles for a clinically relevant, exaggerations and errors that mislead collaborative and patient-centered women with breast cancer and others approach to conducting biomarker concerned about the disease. In our research. These principles serve as a Behind the Headlines program, we framework for the recommendations provide evidence-based analysis of developed by the conference panel. research studies, the facts, to better NBCCF will next mobilize to implement explain what the research actually means these in order to accelerate progress in for women with breast cancer. saving lives. From mammography to treatments NBCCF is grateful to the funders of for early breast cancer to the impact the biomarkers conference: the Regis of low-fat diets on breast cancer risk, Foundation for Breast Cancer Research, we analyze the studies and give the the Doris Duke Charitable Foundation, information individuals need to make Hurricane Voices and the Virginia decisions that will impact their lives. Clinton Kelley Fund. For example, when news stories created a misconception that digital mammography was generally superior Clinical Trials Initiative to traditional film mammography in detecting breast cancers we set the record Why a clinical trials program? Because straight. In fact, digital mammography NBCCF brings a unique patient does not detect more breast cancers in perspective to every aspect of the trials women over 50 years of age, the largest process. In 2005, we collaborated with group of women at elevated risk. While Allos Therapeutics on its ENRICH it does find more breast cancers among clinical trial, which is testing a drug younger women and women with dense to increase the efficacy of radiation for breasts, a much smaller group, we do not women with brain metastases. Another know if it actually saves lives. The media new NBCCF initiative is our work reports of this study created a false sense with the National Cancer Institute and of scarcity of the more expensive digital the North American Breast Cancer technology even though the population Intergroup on TAILORx, a trial to for whom a potential benefit was found determine whether a genomic test can is relatively small. Our website posting predict the response to chemotherapy explained the findings, encouraged among women with early breast cancer women to get more information before who are estrogen receptor positive coming to any premature conclusions and HER2-neu negative. This trial is and helped alleviate anxieties. important because if successful, it would help determine who is likely to benefit from chemotherapy and spare those who won’t from this harsh treatment. 2005 ANNUAL REPOrt ACCESS NBCCF’s Commitment to Many women feel overwhelmed and frightened when they are Quality Information and Universal diagnosed with breast cancer. In Access to Health Care order to provide the tools they need to take control of their NBCCF is committed to providing health care and make difficult evidence-based facts about breast treatment decisions, NBCCF cancer. Whether it is our position has produced a third edition about mammograms, or our belief in of our Guide to Quality Breast maintaining the integrity of drug clinical Cancer Care. Because we want trials, being true to that goal sometimes to reach the largest possible requires that we take unpopular audience, we have made it stands. Our integrity is our hallmark; available on our website.