Breast Cancer Advocacy 101

The National Breast Cancer Coalition knows that making a difference requires more than a passion for the issue, so the organization is training breast cancer advocates in the science and the political savvy they need to effect change in Washington, D.C., and around the world.

By Diana Price

The National Breast Cancer Coalition (NBCC) and its sister organization, the National Breast Cancer Coalition Fund (NBCCF), want women to know that “cancer is a political issue” and that, according to the organization’s president, Fran Visco, advocates truly interested in accomplishing the group’s mission of ending breast cancer “must think about systematic approaches to changing the status quo.”

In examining the priorities—and the track record—of this influential advocacy group, there is no question that the systematic approaches it has employed have had a profound impact on the way lawmakers and the healthcare community think about breast cancer research and treatment.

With a nationwide membership that includes hundreds of member organizations and tens of thousands of individuals, NBCC/NBCCF is consistently referred to as one of the most influential healthcare policy groups. The organization has increased federal funding for breast cancer research (from less than $90 million before the coalition was founded in 1991 to more than 2.1 billion to date), has created a breast cancer research program administered by the Department of Defense (which has attracted more than 29,000 research proposals), has overseen the National Action Plan on Breast Cancer (a collaboration among government, the scientific community, the private sector, and consumers), and, through passionate grassroots advocacy initiatives, has continually presented breast cancer to lawmakers and the public as a priority that cannot be ignored.

So how do they get it done? NBCC/NBCCF members approach their goal by focusing their energy on three critical areas: research (“increasing appropriations for high-quality, peer-review research and working within the scientific community to focus research on prevention and finding a cure”); access (“increasing access for all women to high-quality treatment and care as well as breast cancer clinical trials”); and influence (“increasing the influence of women living with breast cancer and other breast cancer activists in the decision-making that impacts all issues surrounding breast cancer”).

Perhaps the most important component in NBCC/NBCCF’s overall strategy is the dedicated group of highly trained advocates who make the case for breast cancer research on Capitol Hill, in state houses across the country, and in myriad other public forums (including on institutional review boards, at Centers of Excellence, as part of university research centers and steering committees, on data safety monitoring boards, and as writers for local newspapers or contributors to other publications and venues). The training program that these advocates undergo, Fran says, was developed at the organization’s inception when it became clear that “advocates needed to be educated in the science of breast cancer and with that knowledge take a meaningful seat at the tables where breast cancer decisions were being made.”

The intensive program that NBCC/NBCCF ultimately designed to prepare advocates to actively participate in a broad range of advocacy activities—and which provides training that includes bench science, epidemiology, and advocacy—is called Project LEAD. Held once a year and attended by advocates from across the country and around the world who are generally survivors themselves or who have a strong personal connection to the issue, the training includes lecture topics covering genetics, research design, molecular biology, clinical trial design, peer review, and influence strategies in professional settings, among many other relevant topics.

For three to five days, Project LEAD advocates are immersed in the science and the dialogue of breast cancer. At the end of training, Fran says, the result is “a cadre of educated activists who will engage in the wide range of local and national forums where breast cancer decisions are made, by asking probing questions, challenging the status quo, and helping bring an authenticity to the research endeavor.”

Project LEAD is central to the goals and the mission of NBCC/NBCCF, Fran says, because graduates of the training go on to have a tremendous impact. “These well-trained advocates are able to exert significant influence on public policy and the research agenda, they increase the understanding of research and evidence-based healthcare in their communities, and they intelligently influence Congress regarding relevant health and research programs and legislation.”

Ultimately, NBCC/NBCCF advocates hope that they can make many more women aware of the empowering impact of becoming highly educated consumers. More advocates should be aware of their ability to play an important role in the world of breast cancer research, Fran says, because their influence is truly far reaching. By learning the skills to critically appraise grant proposals and research results, educated advocates can “significantly increase the quality of the work being done and speed up our ability to get answers to scientific questions that translate into clinical applications.”

In reviewing the accomplishments that have already distinguished NBCC/NBCCF and in absorbing the passion that fuels the organization’s members and staff, there seems no doubt that this group will continue to transform the advocacy landscape.

For more information about the National Breast Cancer Coalition/Fund and Project LEAD, visitwww.stopbreastcancer.orgor call (800) 622-2838.