Dickersin, Kay

The National Breast Cancer Coalition was born as the Breast Cancer Coalition in May 1991, when organizations that belonged to NABCO, and others, were invited to meet in Washington, D.C., if they were interested in forming a political action group centered on issues of breast cancer. Dickersin attended with Marsha Oakley, who with KD had co-founded Arm-in-Arm, a Baltimore-based breast cancer support group At the D.C. meeting, organized by Susan Hester (Mary Helen Mautner Project for Lesbians with Cancer), Susan Love, Amy Langer (NABCO) and others presented the concept of the Coalition. Attendees were asked who was interested and what each could bring to the effort. KD volunteered her “expertise” as an epidemiologist specializing in clinical trials. Arm-in-Arm served on the Working Board of BCC, then NBCC, until about 2000 or so. Amy Langer served as the first President.

As the only scientist on the Working Board, KD co-chaired the Research Task Force with Susan Love, a nationally known breast surgeon and author. Since one goal was to ask Congress to appropriate more money for breast cancer research, one of the Working Board’s first tasks was to estimate what was being spent at the time and how much more was needed. The National Cancer Institute estimated that approximately $90 million was spent each year. The BCC/NBCC hosted a series of research hearings, to which they invited breast cancer researchers to submit abstracts describing the research they recommended and how much it would cost. The meeting attracted top flight scientists (who paid their own way to the meeting) and led the BCC/NBCC to estimate that $300 million more would be needed in the coming year. When NIH’s Bernadine Healy told the NBCC, “We have enough money for women’s research,” the NBCC turned to the Department of Defense and the Army to be the prospective hosts for the $300 million more campaign (which was successful). The Army, after consulting with the Institute of Medicine to obtain a roadmap, launched its Breast Cancer Research Program, which continues to this day. The DoD program includes consumer advocates in its grants selection process, as a result of successful lobbying by KD and Fran Visco who both served on the Breast Cancer Research Program Integration Panel.

Starting in 1993, the NBCC hosted an annual spring conference to educate breast cancer advocates about advocacy. Included here are the first, second and a few subsequent notebooks from this impressive educational experience. This conference has also been held twice in Brussels for an international group.

The first campaign of the (N)BCC was launched in October 1991 – “Do the Write Thing,” a letter writing campaign to Congress and President George H. Bush, asking for increased breast cancer research funding. This campaign successfully collected signatures and letters from individuals in each U.S. state, the target number of signatures being the number of new cases of breast cancer diagnosed each year in that state. The 1993 campaign aimed to collect 2.6 million signatures, representing the number of women living with breast cancer in the U.S.

Project LEAD was born in 1994-95, when KD suggested that NBCC Board members educate themselves about science so they could share responsibility with her for responding to science questions from Congress and others. In 1994, KD organized a “teach-in” for the Board, a two-day event, after which all agreed the project should be “taken on the road.” The course developed was called Project LEAD, and served to train consumer advocates about science generally (not breast cancer) so that they could have a seat at the decision-making research table. KD developed a preliminary course outline and slides, with a master’s degree student at University of Maryland, David Schmeidler. The draft course was presented to prospective faculty at a Train the Trainers course held in Columbia, Maryland, in 1995, and revised. The first LEAD was held in Los Angeles in July 1995, and was significantly revised again after that. A core faculty taught in Project LEAD. Short graduate refresher courses were held at Advocacy courses in May each year.

From the guide to the Papers, 1991-2002, (Schlesinger Library, Radcliffe Institute)