NAPBC Closeout Memo

October 15, 2000

Dear Madam Secretary,

On behalf of the National Action Plan on Breast Cancer (NAPBC) Steering Committee, we are pleased to report to you the remarkable accomplishments achieved by this unique collective of government representatives, consumer advocates, and other members of the public, including researchers from both public and private institutions, media, and industry representatives. We believe the real accomplishment is not only what we did, but the way in which we did it.

Background On October 18, 1993, petitions with the signatures of 2.6 million Americans were delivered to President Clinton. These petitions, organized by the National Breast Cancer Coalition, represented the activist tradition for advancing social change. The petitions asked the President to develop a "comprehensive plan to end the breast cancer epidemic." In accepting the petitions, the President announced that you would convene a conference to develop an approach to a national action plan on breast cancer.

The conference, held in December of that year, was a unique undertaking that brought together 300 advocates, consumers, clinicians, scientists, government officials, educators, members of Congress, the media, and others to develop a comprehensive plan for fighting breast cancer. The resulting approach was a partnership between the government and non-government sectors to identify high priority areas for action that were not being addressed elsewhere, and to develop strategies to foster progress in these areas. We were determined not to create a new bureaucracy or engage solely in public relations.

Following the Secretary's Conference to Establish a National Action Plan on Breast Cancer, the ten chairs of the conference working groups determined that the Plan should be led by two Co-Chairs, one representing the government sector and one representing the non-government sector. You appointed the Deputy Assistant Secretary for Health (Women's Health) as the Plan Co-Chair representing the government sector. The working group chairs elected the President of the National Breast Cancer Coalition as the Co-Chair representing the non-government sector. These Co-Chairs in turn appointed members representing both sectors to serve on the NAPBC Steering Committee. By June 1994, the unique public-private partnership was firmly established as the National Action Plan on Breast Cancer.

Mission The Steering Committee held a retreat to define the mission and organizational structure of the NAPBC. The mission of the NAPBC was clear and simple: to stimulate rapid progress in eradicating breast cancer. The Plan was designed to identify gaps in knowledge, research, policy, and services related to breast cancer and to serve as a catalyst for coordinated national efforts by government and non-government organizations, agencies, and individuals to fill these gaps. Similar to the old adage about giving a person a fish versus teaching her how to fish, the goal of the NAPBC was not to single-handedly provide all the answers, but rather to jump-start activities by other groups that would lead to the eradication of breast cancer.

Organization Recognizing that "business as usual" would not get the job done, the NAPBC was structured to guarantee consumer involvement and facilitate real partnerships between the players. The Steering Committee provided oversight for implementing NAPBC. Six specific priority areas were identified and the NAPBC Working Groups were established to correspond to them. The Working Groups served to identify, recommend, and oversee implementation of Plan activities. The activities of the NAPBC Steering Committee and Working Groups were supported by the HHS Office on Women's Health and funded by the National Cancer Institute at the National Institutes of Health.

Each Working Group consisted of two Co-Chairs, one representing the government sector and the other representing the non-government sector. Each group initially had no more than 18 additional members comprising representatives from both sectors; liaison and resource members were added to provide additional perspectives and expertise. Totaling more than 100 members, the Working Groups reflected national, state, and community perspectives as well as ethnic, geographic, and experiential diversity. The two Co-Chairs of each active NAPBC Working Group served as members of the Steering Committee. A more detailed description of the NAPBC structure is described in the NAPBC Operating Plan.

The activities of the NAPBC were assigned to the six Working Groups, whose primary goals were to identify actions that responded to the recommendations set forth at the Secretary's Conference. The charges were as follows:

• The Breast Cancer Etiology Working Group was charged with strategies to expand the scope of biomedical research activities related to the causes of breast cancer, particularly in the areas of chemicals and hormones, ionizing and non-ionizing radiation, lifestyle factors, viruses, and gene-environment interactions. This was accomplished primarily through a series of consumer and scientist workshops on these topics, which developed recommendations for future research priorities. The Working Group also developed the Breast Cancer Comprehensive Questionnaire to assist epidemiologic research into possible risk factors.

• The Clinical Trials Accessibility Working Group was formed to increase participation in clinical trials by finding ways to make clinical trials more widely accessible to women with breast cancer and women who are at high risk for breast cancer. The Working Group focused national attention on the issues of clinical trial accrual and reimbursement, and now there are clinical trials registries on the Internet and communication campaigns in development. In addition, policies for cost-of-care reimbursement are now part of the health care reform debate.

• The Consumer Involvement Working Group was charged with promoting the appropriate involvement of individuals and representative groups of consumers in activities related to breast cancer and in all NAPBC activities and projects. Since the beginning of the NAPBC, the landscape has changed dramatically, and consumers are now regularly consulted and included on government committees.

• The Information Action Council was charged with identifying strategies that encouraged the use of the Internet to disseminate information about breast cancer. In 1993 when the NAPBC was formed, the "information superhighway" was a novelty, and it was essential that we set a standard for how this technology could be applied to the fight against breast cancer. Information about breast cancer is now abundant on the Internet, and several community-based programs have started training programs to ensure that everyone has access to this information.

• The National Biological Resource Banks Working Group was charged with establishing a system that would ensure a resource of well-characterized and well-documented biological materials to aid in breast cancer research. This Working Group developed an Internet-based database of biological resource banks nationwide to assist researchers in locating the tissue they need for research. They also developed a model informed consent form for donating tissue; this form is being used in hospitals and research centers across the country. In July 1998, the Working Group's progress was assessed, and the Steering Committee determined that it had met its charge and transferred responsibility for continuing its activities to collaborating partners. Remaining true to the NAPBC's catalytic mission and the Steering Committee's determination not to create an entrenched bureaucracy, this Working Group became the first to sunset.

• The Hereditary Susceptibility Working Group was charged with developing and implementing a comprehensive plan to address the clinical, ethical, legal, and psychosocial ramifications of identifying healthy individuals who may carry a cancer gene mutation. This group was also asked to recommend educational interventions for consumers, health care professionals, at-risk population groups, and policymakers in government and industry. This group produced multiple articles and position papers which have become the foundation for state and Federal policy proposals. They also worked effectively with health care professionals and consumer organizations to make hereditary susceptibility issues a part of medical education and advocacy efforts on breast cancer. Upon assessing the Working Group's progress, the Steering Committee determined that it fully addressed its charge and transferred responsibility for continuing activities to collaborating partners; this Working Group was sunset in December 1999.

A more detailed listing of each working group's accomplishments and how these activities will be maintained and continued is provided in the 1998 Summary of Accomplishments and the Day of Dialogue: Exploring Issues in Breast Cancer, Plenary Session Report. As you can see from this lengthy list, the NAPBC has made substantial progress in bringing national focus on these priority areas and for directing activities to address these challenges.

Next Steps
The work is clearly not done; great challenges still remain in eradicating breast cancer. However, these challenges are now being met through activities in existing public and private resources. The catalytic mission of the NAPBC contributed to much of this activity.

Thanks in great part to the NAPBC mission, the existing agencies and organizations involved in the important fight against breast cancer have developed a new way of doing business. Indeed, the NAPBC successfully brought government and consumer organizations to the same platform, and this happened in the absence of a bureaucracy. We exceeded the boundaries of traditional partnerships and encouraged a new dialogue. We have developed better relations with our sister organizations and look forward to working together in the future under less formal arrangements.

We are confident that you will agree with us that the NAPBC has met its mission to catalyze progress toward the eradication of breast cancer. Therefore, effective October 15, 2000, we are proud to announce that the National Action Plan on Breast Cancer will sunset. We plan to share a report of our progress to the nation, many of whom signed the original petition that started this endeavor nearly seven years ago. It is important to acknowledge that the end of the NAPBC does not mean the end of our efforts against breast cancer. We will all continue to work in our own capacities to sustain activities that came about under the auspices of this partnership. Looking back over the years since you hosted the Secretary's Conference to create a plan to eradicate breast cancer, we have undertaken a remarkable journey. In 1993, public-private partnerships were a novel way of working together but were considered risky for both sides involved. The NAPBC showed such partnerships can flourish, when both sides work together in good faith. We have tried many strategies, not all successful, but in the end we transcended political and institutional barriers to make this partnership work because the fight against breast cancer is so vitally important. The evolution of the public-private partnership, as demonstrated by the NAPBC, will remain part of the legacy of this Administration.

Through the many activities of the NAPBC, we gathered information and identified many resources. This work has now been transferred to new homes where activities can continue and grow. The NAPBC can serve as a model and foundation for future efforts on critical health issues.

We are grateful to this Administration for having given us this opportunity to advance progress against breast cancer.

Sincerely,

Wanda K. Jones, Dr.P.H.

Frances M. Visco, Esq.