NATIONAL ACTION PLAN ON BREAST CANCER A Public/Private Partnership

FACT SHEET
BACKGROUND Breast cancer is the second leading cause of cancer deaths among American women. More than 184,000 women will be diagnosed with breast cancer in 1996, and an additional 44,000 are expected to die from the disease. In 1993, the National Action Plan on Breast Cancer (NAPBC) was initiated in response to the National Breast Cancer Coalition's 2.6 million signature petition calling for a coordinated national strategy to combat breast cancer through public/private partnerships. President Clinton asked the Department of Health and Human Services to respond, and in December, 1993, Secretary Shalala convened the Secretary's Conference to Establish a National Action Plan on Breast Cancer. The conference brought together more than 300 individuals, including breast cancer advocates, consumers, clinicians, scientists, government officials, educators, members of Congress, and the media to craft a series of recommendations for action in education, research, public policy and service delivery. From this conference, a Steering Committee of government and non-government representatives was formed to build necessary public/private partnerships and to guide a comprehensive national plan to eradicate breast cancer. MISSION AND STRATEGY The mission of the NAPBC is to stimulate rapid progress in eradicating breast cancer by advancing knowledge, research, policy, and services. The Plan serves as a catalyst for national efforts, coordinating activities of government and non-government organizations, agencies, and individuals. By encouraging new ideas and mobilizing partnerships, the Plan strives to "jump-start" innovative, long-term efforts that will result in rapid progress in the fight against breast cancer. ORGANIZATION The NAPBC is co-chaired by Susan J. Blumenthal, M.D., M.P.A., Deputy Assistant Secretary for Health (Women's Health) in the U.S. Department of Health and Human Services, and Fran M. Visco, Esq., President of The National Breast Cancer Coalition. The 22 member NAPBC Steering Committee includes government and non-government representatives from research, policy, health care, breast cancer advocacy, and industry organizations. The committee establishes NAPBC priorities, guides implementation of initiatives and ensures coordination across priority areas. Six priority areas have been identified. Working Groups, also comprised of government and non-government representatives, have been established to identify and implement specific initiatives within each of these six priority areas. The U.S. Public Health Service's Office on Women's Health coordinates the implementation of activities, provides administrative guidance, and oversees day-to-day operations of the Plan. PLAN ACTIVITIES AND WORKING GROUP PRIORITY AREAS NAPBC Grant Program In 1995, the NAPBC awarded $9.2 million in small grants and grant supplements for innovative research and outreach projects in each of the Plan's six priority areas. Special emphasis was placed on the development of public/private partnerships in the design and implementation of these projects. Project outcomes are being integrated into ongoing Working Group activities.

Information Action Council Working Group The Information Action Council is identifying strategies to disseminate information about breast cancer and breast health to scientists, consumers and practitioners using state-of-the-art information technologies available on the information superhighway. This group developed a NAPBC Worldwide Web Home Page which provides a central gateway to breast cancer information on the Internet, a source of information about Plan activities, and an electronic forum for NAPBC planning and consumer involvement. National Biological Resource Banks Working Group This group's goal is to establish a national tissue bank to ensure a resource of well-characterized and documented biological materials for multiple areas of breast cancer research. The group has made considerable progress in developing guidelines for the ethical use of biological tissues in breast cancer research, including developing a model informed consent form for use by clinicians, assessing the need for breast tissue among researchers and identifying available sources of tissue. By early 1997, the group will have defined a streamlined process for the donation and use of breast tissue to a national biological resource banks network for breast cancer research. Consumer Involvement Working Group This group seeks to ensure consumer involvement at all levels in the development and implementation of public health and service delivery programs, research studies, and outreach efforts, and to involve advocacy groups and women with breast cancer in setting research priorities and in patient education. Model strategies are being developed for facilitating involvement of consumers in all NAPBC Working Group activities. Breast Cancer Etiology Working Group The goal of this Working Group is to expand the scope and breadth of biomedical, epidemiological, and behavioral research activities related to the etiology of breast cancer, particularly in the areas of chemicals and hormones, lifestyle factors, ionizing and non-ionizing radiation, viruses, and geneenvironment interactions. A series of work-shops is reviewing the state-of-the-science and making recommendations to focus future research efforts. Already the group has identified unmet needs and unresolved research issues regarding hormones, hormone metabolism, the environment, and breast cancer. Clinical Trials Accessibility Working Group The goal of this Working Group is to find ways to make clinical trials more widely accessible to women with breast cancer and women who are at risk for breast cancer. They are identifying barriers to participation in clinical trials and developing strategies to overcome these barriers, including implementation of a media campaign to promote awareness of breast cancer clinical trials and to empower women to ask their physicians about trials open for enrollment. Efforts also are underway to evaluate and improve the accessibility of information systems for health care providers and consumers about breast cancer clinical trials. Hereditary Susceptibility Working Group This group is implementing a comprehensive plan to address the needs of individuals carrying breast cancer susceptibility genes and address the need for education among consumers, health care professionals and at-risk patient groups. Specific initiatives are being implemented to develop an education curriculum for health care professionals and to build consensus among professional

organizations concerning the ongoing need for education. This group also is working to ensure that policies are established that protect women from workplace, health and life insurance discrimination and that research is conducted to understand the psychological and social implications of these new genetic discoveries