Breast Cancer Activists

The Washington-based National Breast Cancer Coalition and the San Francisco-based Breast Cancer Action (by the mid 1990s the most influential advocacy groups involved in breast cancer politics at the national level) cautioned against the widespread availability of the new technology. They worried that the risk information generated by BRCA testing would provide ambiguous results, because of the risk, rather than certainty, of future disease incidence and the paucity of medical management options available. Therefore, both suggested that testing be offered in a highly regulated manner and only in conjunction with extensive clinical care. In fact, the

NBCC went so far as to say that testing should only be provided through research protocols.

Representatives of these patient advocacy groups began to express such opinions almost as soon as the BRCA gene discoveries were announced. In a front-page New York Times article announcing the BRCA gene discovery, Nancy Evans, president of BCA, noted: "It's a very mixed blessing to have this knowledge . . . it's the first step in a long journey, and the journey is probably across a minefield."1 Five days later, Fran Visco, president of the NBCC, worried: "Women will have to be very careful. . . . You're talking about giving them a test telling them they have an 85 percent chance of getting a disease that we don't know how to prevent, and for which there is no known cure."2 Both women, and the groups they represented, urged the public to see the gene discoveries as simply another step in an ongoing research process rather than a solution to the breast cancer problem.

The opinions of these groups were particularly important. Following in the footsteps of the women's health movement of the 1970s and the AIDS movement of the 1980s, breast cancer activists had risen to prominence in the early 1990s by demanding greater influence over US government policies related to research and treatment for the disease. By the mid 1990s, breast cancer activists increasingly assumed expert and advisory roles in the media and on government advisory committees, weighing in on each new advance in treatment, health-care controversy, and proposed change in research funding. One member of the NBCC observed: "I think for the Coalition, I just think that we have a much more reasoned, analytic way of looking at problems. And I think we have, I know we have the respect of many people on the Hill, when they have a breast cancer issue, they call the Coalition to see what we have to say."3 The development of genetic testing for breast and ovarian cancer was no exception, and breast cancer activists quickly supplemented their initial reactions in the media with policy statements that described their visions of the new technology.

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