(Breast Cancer Action)

So Much To be Done: The Writings of Breast Cancer Activist Barbara Brenner

When Barbara Brenner was diagnosed with breast cancer in 1993, friends recommended that she read Audre Lorde’s The Cancer Journals. That book, together with Lorde’s A Burst of Light, inspired her to become a breast cancer activist. Three years after her death from Amyotrophic Lateral Sclerosis (ALS) in 2013, So Much To Be Done. The Writings of Breast Cancer Activist Barbara Brenner has been published by University of Minnesota Press. The book collects the columns and blog posts of this extraordinary woman, offering an invaluable insight into her political and personal itinerary as the most remarkable figure in the history of the political breast cancer movement.

(@dmkasprzak/Twitter)
(@dmkasprzak/Twitter)

Born in Baltimore in 1951, Brenner graduated from Smith College. She enrolled at Georgetown to study law after Smith, but she left Georgetown to go to Princeton, where she met her life partner, Suzanne Lampert. She then dropped out of Princeton too, and moved with Lampert to Los Angeles in 1976, and later to San Francisco. In California, Barbara went back to study law at U.C. Berkeley and became a civil rights attorney. She was also a board member of the American Civil Liberties Union (ACLU) at a local and a national level. Then, in 1993, at age 41, breast cancer changed her life forever. She underwent a lumpectomy, followed by chemotherapy and radiotherapy (and when her cancer recurred in 1996, she had a mastectomy). While still in treatment, in early 1994, she sent a letter on breast cancer research to the San Francisco Chronicle. Nancy Evans, then president of Breast Cancer Action (BCAction) — a small grassroots San Francisco-based organization founded in 1990 by women living with the disease — was impressed by the letter and convinced Brenner to get involved. A year later, she became President and subsequently Executive Director of BCAction. Under her leadership, the organization acquired increasing prominence, establishing itself as the watchdog of the breast cancer movement.

A visionary and witty writer, Brenner wrote a regular column, “From the Executive Director,” published in every issue of BCAction’s newsletter, The Source, over the course of fifteen years. She routinely offered sharp and accessible analysis of the multifarious aspects of breast cancer. Even today, topics such as the organization of research funding are still incredibly topical. Brenner denounced the lack of coordination for breast cancer research both in the public and the private sector: “I doubt anyone in the federal government or anywhere else would claim with a straight face that we have a coordinated strategy for finding a cure for, or understanding the causes of, breast cancer” she wrote in 1998. The involvement of those affected by the disease in this particular realm was crucial, in her view, to stop the epidemic. As Rachel Morello-Frosh, professor of Environmental Science, Policy and Management at University of California, Berkeley, notes in her introduction to the volume, Brenner’s contribution to the democratization of the scientific enterprise was invaluable.

These efforts went hand-in-hand with those of making the cancer establishment accountable for the misleading information on the disease provided to the public, including the widely-held assumption that mammography screening was a surefire method to save women’s lives. She also deplored the ongoing commercial exploitation of breast cancer. In 2002, BCAction launched the project Think Before You Pink, exposing for the first time the phenomenon of “pinkwashing.” Pinkwashers are companies, Brenner explained, “claim[ing] to care about women’s lives by making a commitment to breast cancer but whose products are linked to the disease.”

Brenner did not fear to tell unpleasant truths. Statements like “at this moment any expectation or confidence that breast cancer, once treated, will never recur is a […] false hope,” although shocking, still perfectly describe the reality that those diagnosed with breast cancer routinely face. She stated unequivocally that, “as long as people will pretend that there is a cure for breast cancer, women will continue to die from neglect of this disease.”

Brenner also demanded that the pharmaceutical industry be held accountable for treatments they advertised as “breakthroughs.” In 1998, BCAction became the first breast cancer organization to refuse funding from companies making profits from or contributing to the epidemic. This decision — as Brenner spelled out — put the organization “in a unique position to articulate a clear standard for approval of new breast cancer drugs.” Brenner never abdicated from such a role, even at the cost of her own popularity. For example, for many years BCAction opposed the approval of Avastin for metastatic breast cancer by the FDA — eventually revoked in 2010 — because the drug did not improve overall survival or quality of life and caused serious side effects. “Activists” — she pointed out in 2011 — “want to make the world better for people. They are committed, though, and they are not afraid to speak their minds. […] Being an activist is not for the faint of heart.”

Even after she was diagnosed with ALS and had to retire a year earlier than planned from her job at BCAction, Brenner continued to make her voice heard. In March 2011, she started a blog, Healthy Barbs. She also shared more personal notes, sometimes co-written with her partner, on the website Caring Bridge.

Facing a terminal illness did not weaken her indomitable spirit. She kept asking tough questions and resisted the limitations posed by ALS on her day-to-day life with pragmatism and creativity. She preserved her mobility, thanks to a motorized wheelchair, and began using a voice amplifier and, later, text-to-speech software to help with her progressive loss of speech. Reflecting on these life changes, she wrote, “Barring a medical miracle or a tornado hitting our house, ALS will get me one day. But, until that day comes, I will work to manage what I can. Using aids […] enables me to continue to function at the level my energy permits. I have a lot to live for, and a lot to do. Surrender is not an option for me.” She announced her imminent death on her blog on May 7th, 2013, predicting that “some ambitious person might turn it into a book” and died three days later.

Barbara Brenner was an incredibly skilled political agitator and organizer whose legacy will influence generations to come. She has changed forever the landscape of the breast cancer movement and of health activism. Her writings are essential reading for anyone interested in these issues. Furthermore, they will present an effective toolkit for those working to resist the dominant discourse on patienthood in pursuit of social and medical justice.

Barbara Sjoholm, ed. So Much To Be Done. The Writings of Breast Cancer Activist Barbara Brenner. Minneapolis: University of Minnesota Press, 2016.

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