© 2002 by Oxford University Press
Journal of the National Cancer Institute, Vol. 94, No. 18, 1349,
September 18, 2002
© 2002 Oxford University Press
NEWS |
After Long Island Study, Advocates Look for a Stronger Voice
Barbara Balaban says that if she had known in the early 1990s what she knows now, she and other activists might never have pressed Congress to conduct a case–control study to find the environmental roots of breast cancer on Long Island.
"A prospective cohort study is the way to go, and if we had done that, we would now be halfway through it," said this prominent early activist, the former president of the Long Island Breast Cancer Network, an umbrella organization of breast cancer citizens groups in that area.
"Activists were not educated early enough to understand the difference between these types of studies," Balaban said. "Now I know how tremendously valuable a prospective study is."
But she also argues that after Congress passed the legislation mandating the Long Island Breast Cancer Study Project, activists were kept out of the loop in deciding what kind of case–control study to do. The lesson activists learned during this long study, they say, is that they must stay on top of the research, and they also need to help direct it. With that in mind, Balaban and others are looking again to Congress to ensure that the link between the environment and breast cancer will stay a top research priority.
They are specifically backing the Senate Breast Cancer and Environmental Research Act, which would make grants for multi-institutional, multidisciplinary research centers to study the potential links between the environment and breast cancer.
The bill, which was introduced in May 2001, authorizes $30 million per year for 5 years and would be administered by the National Institute of Environmental Health Sciences. Eight multi-institutional, multi-disciplinary research centers would be established to study environmental factors that may be related to the development of breast cancer. These centers, in turn, would award grants based on a competitive, peer-reviewed process that involves consumer advocates. "If we have learned anything, it is that research has to be interagency and multidisciplinary," said Balaban. "An NCI epidemiology study is not enough."
According to the National Breast Cancer Coalition, a grassroots organization composed of 600 member organizations and more than 70,000 individuals who support the legislation, one of the goals of the bill is to "expand the influence of breast cancer advocates in all aspects of the breast cancer decision making process."
To Marilie Gammon, Ph.D., that objective has already been met. Gammon, of the University of North Carolina at Chapel Hill, met personally and often with nearly 100 different representatives of grassroots organizations on Long Island during the course of the research, and on August 5, the day before a public press conference was held to explain the results, she presided over a four-hour meeting with advocates and politicians to try to put the research into context. "That’s unusual," she said.
"Breast cancer research is now inherently tied to breast cancer activism," said Barron Lerner, M.D., author of The Breast Cancer Wars and an associate professor of sociomedical science at Columbia University. Breast cancer activists have effectively learned from AIDS activists that a lot of noise can translate into research dollars, and now more is spent on breast cancer research relative to many other cancers, he said. But the crunch comes when science cannot prove the long-sought connection between cancer and exogenous toxins, he said.
"Studies that attempt to identify carcinogenic substances are notoriously difficult to do," he said. "Activists and researchers may need to acknowledge that a link between breast cancer and environmental toxins, if it exists, may be impossible to prove."
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