Coalition lor a cause

US activists demand a say in the government's modus operandi in using funds for breast cancer research

Published: Friday 15 December 1995

A GROUP of 270 fiery advocates forming the National Breast Cancer Coalition, has been persistently and successfully lobbying with the government to increase federal funds on cancer research. Fran Visco, a breast cancer survivor in the us leads this Coalition. The government was spending around us $90 million on breast cancer research in 1991, when the Coalition came into being, Now it doles out us $475 million. The latest stand taken by Visco and her fellow activists is that they should also play a role in deciding how these funds should be spent. "What we are trying to form is a group of advocates who can work side by side with scientists in charting the course of breast cancer research," declares Visco.

Supported by Kay Dickersin, a biologist from the University of Maryland, Visco has formulated the project LEAD (Leadership Education and Advocacy Development) which comprises workshops. Visco is confident that her trainees would soon be ready to join local boards which review research on patients, plan committees, and peerreview study sections of the National Institute of Health.

Richard Klausner, director, National Cancer institute, idmits that his parteys with the Coalition have been "tremendously productive". But he is still sceptical about a blanket policy prescribing advocates' involvement in peer-rcview and other decision-making processes.

"It does not necessarily make sense to assign an advocate for every disease to every study section that may match his or her area of interest. Science does not neatly divide up that way," he counters. Sydney Salmon, director, Arizona Cancer Centre in Tucson, agrees. "The most interesting and innovative ideas that have revolutionised biomedical research, have by and large come from scientists," he argues, "and not from bureaucrats - be they from governmerit or advocate groups."

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