Beverly Canin

Speaking Truth to Power

Beverly Canin found her voice as a consumer advocate after a diagnosis of early stage lobular breast cancer. Then 66, retired and recently widowed, she was concerned about the possible side effects of chemotherapy but her medical oncologist didn’t want to listen. “You have to have chemo, she said,” Canin recalls. But Canin was proactive and had done her homework. “You don’t tell me I have to do anything. I know I have choices.”

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She also found a cancer support center at a hospital in upstate Kingston, NY, near her home. “I found women there like me,” she says, “questioning standards of care, not getting information, told they were crazy.” The women were forming a nonprofit, Breast Cancer Options (BCO), to provide unbiased education and support to patients. She joined, helping to write grants and ultimately serving as board president.

Since then, this 84-year old African-American woman’s remarkable activism and drive to speak truth to power have spanned everything from counseling newly diagnosed breast cancer patients, to membership in the Cancer and Aging Research Group (CARG), presenting at scientific meetings, co-authoring peer reviewed articles, serving as a co-investigator on clinical studies, chairing patient advisory committees, reviewing grant proposals for breast cancer research programs, and calling out cancer-related hypocrisy by corporations.

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“There is need for voices, patient voices, advocates, to keep people honest,” she explains.

Keeping people honest has sometimes meant challenging sponsors and allies. Soon after her treatment, Canin participated in a cancer walk sponsored by the Avon Foundation, a leading corporate supporter of breast cancer research and services. But when she learned that Avon’s financial commitment to underserved women was less than expected, she took action, joining the Follow the Money initiative of Breast Cancer Action. “We really put it to Avon to be transparent about the money raised, to keep it in the communities where it was raised, and to get carcinogens out of Avon products,” she says.

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She is also outspoken about the design of clinical trials, which she believes should be more patient-centered in how they are run and the outcomes they seek. “If you are designing a research project and patients have to travel half a day to participate in the trial, they won’t come. Simple example, but it happens,” she says. “In the end, many patients really care about quality of life, not length of life, and researchers are starting to understand that. Particularly, older patients want to be comfortable.”