Papers of Kay Dickersin, 1976-2004

Professor of epidemiology and advocate for breast cancer survivors, Kay Dickersin attended the University of California, Berkeley (BA in Zoology, 1974; MA in Cell Biology, 1975) and The Johns Hopkins University School of Public Health (PhD, 1989). She has served on the faculty at the University of Maryland School of Medicine in the Departments of Ophthalmology and Epidemiology and Preventive Medicine in various capacities (1989-1998) and on the faculty at Brown University (1998-2005). She has lectured at the Johns Hopkins University Bloomberg School of Public Health since 1991, and since 2005, she has been Professor of Epidemiology and the Director of the Center for Clinical Trials where she is involved in methodologic research, overseeing coordination of data collection and analysis of clinical trials, and systematic reviews. The latter especially pertains to her work as Director of the United States Cochrane Center, one of thirteen centers in the international Cochrane Collaboration, a post she has held since 1994. Dickersin's major research interests include randomized clinical trials, systematic reviews, reporting biases, evidence-based health care, and comparative effectiveness research. She has conducted studies in a number of important subject areas, including eyes and vision, surgery, and women's health.

Dickersin was diagnosed with breast cancer when she was 34 years old. A breast cancer survivor, she dedicated much of her career to breast cancer research advocacy. Dickersin and fellow advocate and nurse, Marsha Oakley, cofounded Arm-in-Arm, a Baltimore-based breast cancer support group and the support arm of the Maryland Women's Health Coalition, in 1984.

The National Breast Cancer Coalition (NBCC) was born as the Breast Cancer Coalition in May 1991, when organizations that belonged to the National Alliance of Breast Cancer Organizations (NABCO), and others met in Washington, D.C. to form a political action group centered on issues of breast cancer. At this meeting, Susan Hester (Mary Helen Mautner Project for Lesbians with Cancer), Susan Love (breast surgeon), Amy Langer (NABCO), and others presented the concept of the Coalition. Arm-in-Arm was an original member of the working board of NBCC. Through Arm-in-Arm, and because of her expertise as an epidemiologist specializing in clinical trials, Dickersin became a leader within NBCC.

Patricia Barr was born in 1951. Diagnosed with breast cancer in 1987, she died in 2003 from the disease. Barr was a leading activist for breast cancer research and advocacy. In addition to being a founding partner in the law firm Barr, Sternberg, Moss, Lawrence, Silver & Saltonstall, P.C., she was the president of the advocacy and support organization Breast Cancer Network of Southern Vermont. This organization originally formed as the Bennington chapter of the Breast Cancer Action Group of Vermont in 1992. The chapter became a separate organization in 1993, and in 2001, Breast Cancer Network changed its name to Vermont Cancer Network. Barr represented the Breast Cancer Network on the board of the NBCC and was also one of its founders and original directors. She played an active role in the organization's goal of obtaining increased government funding for breast cancer research. Through her positions in these organizations, she was a member of the National Cancer Institute's informed consent working group that established national standards for participants in cancer clinical trials and she served on the National Institutes of Health Secretary's advisory committee on genetic testing.

Annette Drummond was born in 1927. For most of her life, Drummond was a middle school science teacher in Baltimore, Maryland and taught at Woodbourne Junior High School in Baltimore (1957-1968), and later at both Cockeysville Junior High School and Ridgeley Middle School (1970-1981). She also taught in the computer literacy project at Catonsville Community College (1984-1985). Until her death of breast cancer in 2001, Drummond was an advocate for breast cancer patients. She served as the treasurer at Arm-in-Arm and was the grassroots coordinator for NBCC in Maryland.

Mary Jo Kahn was a founding member and the first president of the Virginia Breast Cancer Foundation, an advocacy and support organization. Kahn, who was diagnosed with breast cancer in 1989, started the Foundation with other activists who met in a breast cancer support group in 1991. The Foundation was involved with the working group that later became the board of directors of the NBCC. It was also the first chair of the grassroots taskforce for NBCC where its members played a central role in organizing NBCC's first campaign, in October 1991. Do the Write Thing was a letter writing campaign to Congress and President George H.W. Bush, asking for increased breast cancer research funding. This campaign collected signatures and letters from individuals in each state, the target number of signatures being the number of new cases of breast cancer diagnosed each year in that state.

Frances Visco served as the first elected President of NBCC, which has two organizational arms: NBCC, whose purpose is to lobby Congress and the states for improved public policies relating to the eradication of breast cancer and the National Breast Cancer Coalition Fund (NBCCF), which supports the educational efforts of NBCC.

After the success of NBCC's Do the Write Thing campaign, the organization launched a new campaign in 1993 to collect 2.6 million signatures representing women living with breast cancer in the United States.

In the early 1990s, Dickersin co-chaired the NBCC Research Task Force with Dr. Susan Love, a nationally known breast surgeon and author. Since they would be asking Congress to appropriate more money for breast cancer research, their first tasks were to estimate what was being spent at the time and how much more was needed. They hosted a series of hearings, at which breast cancer researchers were invited to submit abstracts telling them about the research they recommended and how much it would cost. The meeting led them to estimate that $300 million more would be needed for the coming year in research. The NBCC turned to the Department of Defense and the Army to be the prospective hosts for the $300 million more campaign. The Army, after consulting with the Institute of Medicine to obtain a roadmap, launched its breast cancer research program in 1993. Dickersin served on the Institute of Medicine panel to advise the Department of Defense. The Department of Defense then set up a two-stage peer review system. They named the second tier peer review the Breast Cancer Research Program Integration Panel. Dickersin served on the integration panel from 1993 to 1996.

NBCC initiated other significant programs during the 1990s. Starting in 1993, the NBCC hosted an annual spring conference in Washington, D.C., to educate breast cancer advocates about advocacy. This conference was also offered twice in Brussels, Belgium, for an international group of attendees. In 1994, the NBCC embarked on a signature campaign to enact the Department of Health and Human Services' Secretary's National Action Plan on Breast Cancer (NAPBC), in which Dickersin was involved. Project LEAD developed around 1994, when Dickersin suggested that the NBCC board members educate themselves about science so they could share responsibility with her for responding to science questions from Congress and others and the Board engaged in two day sof "teach-ins" about basic science and epidemiology/biostatistics. The Project LEAD course, launched by the Board so that its membership could benefit from a similar experience, served to train consumer advocates about science in general so that they could play a role in decision making. Dickersin developed a preliminary course syllabus and materials, and the draft course was presented to prospective faculty at a Train the Trainers event held in Columbia, Maryland, in 1995. The first LEAD course workshop was held in Los Angeles, July 1995.

In 1995, the biotechnology firm Genentech asked NBCC to help them recruit individuals for the first trial of Herceptin, a chemotherapy drug that is used for adjuvant and metastatic breast cancer treatment. NBCC asked that, in exchange for alerting consumers to the need for patients in the trial, consumers should be added to the trials' scientific committees. Frances Visco was appointed to the steering committee and Dickersin was appointed to the data monitoring committee. In 1996, the NBCC Fund held the first annual think tank on breast cancer called the Aspen Project in Aspen, Colorado. The meeting brought together a diverse group of visionaries, which included researchers, clinicians, journalists, philanthropists, industry representatives, social scientists and consumers. At this meeting, participants discussed issues relating to research, public policy, access to care, and barriers to eradicating the disease.