Panelists Put Breast Cancer Funding Into Political Focus Cynthia Salter -------------------------- Special to The Gazette Breast cancer survivors have achieved an unprecedented influence in decision making about scientific research and federal funding over the past 10 years. Through focused grassroots activism and continued lobbying in Washington, D.C., advocates have placed breast cancer high on the public agenda and set an example for other advocacy groups attempting to draw attention and funding to their causes. Much work remains to be done, however, to spread the benefits of this advocacy to minority and low-education women. Questions about the interplay among grassroots advocacy, politics and science were raised and discussed last Tuesday at a symposium sponsored by the Institute for Women's Health Research and Policy at the School of Hygiene and Public Health. The institute is a group of faculty from various School of Public Health departments whose mission is to improve the health of women by conducting scholarly research on women's health, communicating research results to the scientific and public health community and to the general public, and applying research results to health services delivery and public policy. Connie Nathanson, professor in the Department of Population Dynamics, was the moderator. Three speakers, with roots in various federal government agencies, described the history and current realities of breast cancer, which strikes roughly 182,000 women in the United States and kills 46,000. Suzanne G. Haynes, assistant director for science with the Office on Women's Health at the U.S. Department of Health and Human Services, outlined the history of the National Action Plan on Breast Cancer formed in 1993 after petitions containing 2.6 million signatures were presented to newly elected President Bill Clinton. Because the NAPBC, which received $10 million in federal funding to finance breast cancer research, wanted to encourage public-private collaboration, grant applicants were required to work with advocacy and consumer groups. Each group reviewing applications included two breast cancer survivors. "That was a unique idea," Haynes said, "to have the breast cancer advocates, along with the scientists, decide who got funded. And they were terrific. They brought in aspects of the study that the researchers hadn't thought of." The NAPBC funded 99 of the 600 grant applications it received, the majority in disease etiology, but also many in information dissemination and consumer involvement and advocacy. But bringing research scientists and breast cancer survivors together was not always easy. "I guess if there was anyone there at the National Cancer Institute supportive of advocates, it's me," Haynes said. "But it's tough to work with advocacy groups; it's a tough interplay. Advocates need to be angry, fighting for something they believe in. So here always is a built-in tension. But it's still good science," she emphasized. Larry Kessler, director of the Office of Surveillance and Biometrics at the Center for Devices and Radiological Health at the U.S. Food and Drug Administration, which is focused on breast cancer screening and mammogram use, pointed out that such response is new for many scientists. "I don't think that scientists have been made to listen to their constituents before," he said. "But that circle is valuable. There must be tension for it to succeed. But if there's communication, it will be productive." Kathleen Muzdakis, senior legislative assistant for Congresswoman Louise Slaughter, described the battle fought by the Congressional Caucus on Women's Issues to ensure that federally funded health research broaden its male focus to include women's health issues, cautioned that even the success of advocacy itself can become a political tool. "Breast cancer advocacy presents a striking example of how to cut through to focus on one issue," she said. "But it can be used by many different sides for reasons that are not always for advancing women's health. Breast cancer is now a non-controversial issue used by some men politicians to appear to be pro-woman, without supporting women on other issues."
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