Sharon Batt

When political activist, Greek scholar and former nurse Janet Collins announced ten years ago that she was going to hold a World Conference on Breast Cancer in Kingston, I was among those who wondered — mere weeks before the conference — if she could pull it off. I happily ate my words. For a steamy five days in July 1997, about 1000 delegates descended on the Queen's University campus for one of the most extraordinary breast cancer meetings I've ever attended. The conference was truly international: women from Japan, Africa, Australia, Southeast Asia, Europe and the Philippines exchanged experiences with their North American counterparts, although much of the media buzz focused on the impressive roster of American stars, including Bella Abzug, Matuschka, Sandra Steingraber and Dr. Susan Love. Janet had a clear vision: to change the world.

The conference focused on the unmet needs of women with breast cancer, wherever they lived, and on the environmental links to cancer; it set an international agenda for policy change. Scientists were invited (and some came), but this was never intended to be a scientific meeting. Instead, Janet orchestrated a crazy sort of anarchy where "all voices were heard." At one plenary, a physician tore a strip off an alternative medicine practitioner from Mexico; at another, an angry Bella Abzug challenged genetics researcher Steven Narod from the floor on the question of prophylactic mastectomies for women who tested positive for BRCA 1 or 2. A California woman I met some years later aptly termed it the Woodstock of Breast Cancer. "And I missed it!" she lamented.

Fast forward to Halifax, June 2005: two more international conferences have been held, in Ottawa and Victoria. In Halifax, Janet Collins is no-where to be seen (the conference has undergone several leadership changes), the late Bella Abzug's environmental group, the Women's Environmental Development Organization/ WEDO, is no longer a partner, hotels and conference centres have replaced the university campus as a venue, and the cafeteria food has given way to much fancier fare. Novartis, Astra-Zeneca, Ortho Biotech and Roche Laboratories are among the sponsors (Janet turned pharma funding away). Has the conference gone main-stream?

That's a tricky question. The Fourth World Conference was still very much a conference for women, organized by women. It was still impressively international, but it was smaller and the audacious pizzazz was gone. Environmental concerns had a place (including one plenary presentation, by epidemiologist Kristan Aronson of Queen's University) but this was contained and disconnected from any agenda for policy change. Dr. Annie Sasco of the World Health Organization, whose world overviews of breast cancer have kicked off previous conferences, was absent, although she had been listed in the preliminary program. A strong Aboriginal theme shed a welcome light on how native women experience breast cancer (including a wonderful plenary by Cherokee healer Linda Burhansstipanov), but this too had no momentum towards policy change. Whereas the Kingston conference culminated in a formal "hearing" in a church, at which environmental activists challenged high-ranking policy makers from the UN and various countries to eliminate environmental carcinogens, the Halifax conference devoted the last day to a hodge-podge of advocacy workshops, ranging from pharma-ceutical giant AstraZeneca's "breast health awareness" program about screening and healthy lifestyle choices, to California activist Nancy Evans' fine "state of the evidence" talk on the connection between the environment and breast cancer. The conference made no effort to build consensus for action, or to directly engage policy-makers. A keynote address by environmentalist Elizabeth May, listed on the early program, didn't happen. Invited in the fall 2004 to deliver the wrap-up plenary, the Sierra Club dynamo was "disinvited" several months before the conference.

Like the breast cancer movement, the World Conference seems to have traded a passionate vision of international change for a marketplace concept. Its menu of talks and workshops served up a little something for everyone. I wasn't alone in my hunger for more substance. Some attendees proposed moving the conference out of Canada, perhaps to an African country, or to the Philippines, where the indefatigable Danny Meneses is eager to host a 5th World Conference. Another suggestion (not necessarily incompatible with the first) was to split the vision in two, severing the bloated emotional support portion of the conference from its withering policy and political advocacy arm. Any major shift in direction carries risks; but the courage to take risks is what put this conference on the map in the first place.