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Diseases Chasing Money and Power: Breast Cancer and Aids Activism Challenging Authority

Published online by Cambridge University Press:  14 October 2011

Amy Sue Bix
Amy Sue Bix
Affiliation:
Iowa State University
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Extract

Through the 1980s and early 1990s, the course of American health research was increasingly shaped by politically-aggressive activism for two particular diseases, breast cancer and AIDS (Acquired Immunodeficiency Syndrome). Even as national stakes rose, both in dollars spent and growing demands on the medical system, breast cancer and AIDS advocates made government policy-making for research ever more public and controversial. Through skillful cultivation of political strength, interest groups transformed individual health problems into collective demands, winning notable policy influence in federal agencies such as the National Institutes of Health (NIH) and Food and Drug Administration (FDA). Activists directly challenged fundamental principles of both government and medical systems, fighting to affect distribution of research funds and questioning well-established scientific methods and professional values. In the contest for decision-making power, those players achieved remarkable success in influencing and infiltrating (some critics said, undermining) both the politics and science of medical research. Between 1990 and 1995, federal appropriations for breast cancer study rose from $90 million to $465 million, while in that same period, NIH AIDS research rose from $743.53 million to $1,338 billion.

Type
Articles
Information
Journal of Policy History , Volume 9 , Special Issue 1: Health Care Policy in Contemporary America , January 1997 , pp. 5 - 32
Copyright
Copyright © The Pennsylvania State University, University Park, PA. 1997

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References

Notes

1. Figures from the National Cancer Institute and the American Foundation for AIDS Research.

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34. In 1994, over 182,000 American women faced diagnosis of breast cancer, while about 46,000 die from breast cancer per year. The figure “one in nine” was used most commonly in popular discussions, though some breast cancer observers talked about “one in eight” or “one in ten.”

35. February, 1996 fundraising letter from the National Breast Cancer Coalition.

36. Complicating the efforts to establish the importance of regular mammograms firmly in women's minds, however, medical organizations and doctors disagreed about the best age to start testing. Wallis, Claudia, “A Puzzling Plague,” Time, January 14, 1991: 48–52.Google Scholar

37. Hilts, Philip J., “U.S. Breast Cancer Deaths Fell Nearly 5 Percent in Three Years,” New York Times, January 13, 1995: A17Google Scholar. Screening also complicated scientific questions, since new microscopic and molecular diagnostic techniques permitted researchers to find tiny cancer cell clusters, which some researchers suggested might carry a different meaning than full cancer, proving fundamentally harmless. Autopsies done on females age forty to fifty detected tiny breast tumors in 39 percent, “so quiescent [that]… had they been detected while the woman was alive, they would have been labeled as breast cancer” though not fitting the popular image of cancer as a rapidly spreading mass. Researchers expressed concern that as ability to detect smaller tumors increased, practitioners would face the challenge of deciding how aggressively to treat spots which might or might not turn deadly. Kolata, Gina, “New Ability to Find Earliest Cancers: A Mixed Blessing,” New York Times, November 8, 1994: B5, B8.Google Scholar

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