Getting Tough About Breast Cancer

Activist Barbara Brenner isn't content with pink ribbons, breast cancer walks, and fundraising postage stamps. She's an in-your-face fighter against the disease.

Medically Reviewed by Craig H. Kliger, MD
From the WebMD Archives

Sept. 1, 2000 -- It's mid-morning on a sunny San Francisco day, and a small band of demonstrators gathers in front of a grocery store to stage a protest against genetically engineered food.

The scene is earnest but surreal: There's a guy dressed as a can of Campbell's "Experimental Vegetable Soup" and another wearing a Frankenstein mask, a reference to the so-called "frankenfoods" produced by biotechnology companies. Young women dressed in white biohazard suits pass out flyers while a homeless person sits on a garbage can and waits for the speeches to begin.

Standing to one side, Barbara Brenner, 48, smiles patiently. With her close-cropped hair, black leather jacket, and paper cup of coffee in her hand, she might be just another working woman on her way to the office. Yet when she takes the microphone, this petite woman unleashes a righteous anger that jolts the group awake.

"What do genetically engineered foods have to do with breast cancer?" Brenner asks, calling out over the din of nearby buses and cars. "The answer is, We don't know."

As the protesters listen, Brenner methodically ticks off a list of potential problems. Compared with organic soybeans, it turns out, genetically engineered soybeans contain 40% fewer isoflavones, she says -- plant-based estrogens that studies show may be protective against breast cancer.

"The burden of proving that genetically engineered foods are safe should fall squarely on the companies that are marketing these foods. It should not be up to consumers," Brenner says, her voice rising. "To allow these foods to be marketed makes us, once again, guinea pigs in a vast, uncontrolled experiment.

"On behalf of women with and at risk for breast cancer -- which is, after all, all women -- we say no! We will be guinea pigs no longer. The interests of the public's health must be put before profits!"

The speech is typical Brenner: Equal parts science and sound bites, fueled by passion as well as intellect. It's a call to action.

Challenging the Norm

Action is certainly Brenner's credo. The executive director of a small, San Francisco-based group fittingly called Breast Cancer Action (BCA), she is making a name for herself by taking on some of breast cancer's most sacred cows, including the National Cancer Institute ("we're very concerned that [it] gets too much money"), mammography ("it's not what it's cracked up to be"), and even the breast cancer stamp (the money it raises should fund research into environmental causes, Brenner says, not only treatments).

A passionate, intelligent woman, Brenner has a wit that can be biting. She calls Breast Cancer Awareness Month "Breast Cancer Industry Month," saying that it amounts to nothing more than an advertising blitz every October by drug companies. (She's proud to point out that BCA doesn't take corporate contributions.) Ask Brenner what makes her group different from other breast cancer groups, and she's likely to respond, "They get money. We give them hell."

A good example is Brenner's battle with Avon: Recently, she made headlines by criticizing the cosmetic giant's annual breast cancer walk, calling it a corporate "exercise-a-thon" that raises far less money than walkers are led to believe.

According to Brenner, 36 cents of every dollar raised by Avon's walk goes to overhead, including marketing and organizational costs. Palotta TeamWorks, the company Avon hired to stage the event, doesn't dispute Brenner's figures. But Brenner says Avon, a Fortune 500 company, could easily underwrite those administrative costs itself. She has also taken on the National Alliance of Breast Cancer Organizations (NABCO), which has traditionally taken a cut of the proceeds in exchange for helping Avon to distribute race funds to worthy community groups. Brenner criticized NABCO for channeling money to organizations that only encourage women to get cancer screening, instead of providing mammography themselves.

Brenner's broadside hit home: Recently, Avon announced that it would change its funding policy and donate money from the walk directly to five leading academic centers through its own foundation, eliminating NABCO's fee. NABCO executive director Amy Langner declined comment on Brenner's criticisms, except to say that changes in the Avon program were well underway by the time Brenner took aim.

Not Your Usual Breast Cancer Group

While Brenner's sharp attacks can cause consternation among her targets, she takes pride in posing a different point of view. Breast Cancer Action's motto, emblazoned on purple lapel pins, is "Cancer Sucks" -- an uncompromising expression of rage at a disease that strikes more often today than 20 years ago, despite remarkable advances in screening and treatment.

"We make people nervous. This is not the breast cancer organization for everyone," says Brenner. "Our name implies that we'll do more than hand out pink ribbons and hold a 5-K run."

Behind Brenner's in-your-face approach is a resume that would make a yuppie proud, including a law degree from the Boalt School of Law at the University of California at Berkeley and a prestigious clerkship for a federal judge. A self-styled progressive, she attended Smith College in Massachusetts, where she demonstrated against the Vietnam War. When she moved to San Francisco, she became part of the city's gay and lesbian rights movement and served two stints on the board of the American Civil Liberties Union.

In 1993, at the age of 41, however, she was diagnosed with stage 1 invasive ductal carcinoma of her left breast. She had a lumpectomy, chemotherapy, and radiation. Three years later, she had a recurrence in the same breast, necessitating a mastectomy.

Brenner, who remembers her mother taking her as a child to hear Martin Luther King speak at a civil rights rally in Baltimore, says it wasn't long before her disease crossed the line from personal to political. "A diagnosis of breast cancer is personally devastating, but it can be converted to something positive," says Brenner.

Too Radical?

Yet some criticize Brenner as too confrontational. "BCA has been very negative toward the National Cancer Institute [NCI] with regard to breast cancer research studies that we fund," said Susan Siebel, MD, director of the office of communications at the NCI and its nationwide liaison to breast cancer advocacy groups. "The tendency for them is to overlook or ignore what we're doing."

Siebel is still irked by a recent fundraising appeal sent out by BCA that claimed credit for forcing the NCI to release results from a series of studies last year on bone marrow transplants and high-dose chemotherapy earlier than planned.

Brenner says that the NCI tried to withhold the results for three months until they could be presented at a meeting of the American Society for Clinical Oncology in May, but that intervention by BCA -- including an appearance by Brenner on the NBC Nightly News -- forced the NCI to release the results in March, two months earlier. In this effort, BCA also used one of its favorite tools: the "zap." Activists clog up fax and phone lines and generally make life miserable for a high-ranking official, corporate executive, or other target whose number has "leaked" out. "We sent letters, we alerted our activists, we sent people the NCI director's phone line, and his address," says Brenner.

But Siebel, who works closely with NCI director Richard Klausner, says she's unaware that any "zap" occurred and adds that the NCI, along with other breast cancer organizations including NABCO, the Susan B. Komen Breast Cancer Foundation, and Y-Me, had already been working for weeks to publicize the study results on the Web by the time BCA spoke out.

"She's absolutely delightful as a person, and I really like her," says Siebel of Brenner, whom she knows personally. But the efforts by BCA, she insists, "did not play into the NCI's decisions by any means."

Activism at Work

Though she may face opposition and doubt over her techniques, Brenner continues her quest to do things a little differently. While the Susan B. Komen Foundation has its "Race for the Cure," BCA has the Audre Lorde Action Brigade, a feisty group that stages an annual "Cancer Industry Tour" that includes protests at companies like Bechtel, Pacific Gas and Electric, and Chevron, drawing attention to what BCA says are practices that may pollute the environment and could be causing higher cancer rates.

Founder Eleanor Pred consciously modeled BCA on Act-Up, another San Francisco-based group that has made confrontation synonymous with AIDS advocacy. And sometimes confrontation works: In 1997, Brenner and BCA successfully worked with Genentech to create a landmark "compassionate use" policy under which women with metastatic breast cancer could enter a lottery to receive Herceptin -- a genetically engineered breast cancer drug -- even if they had not been accepted into clinical trials.

Ultimately, however, Brenner is fighting for more than a new drug or another research study. A day after the frankenfoods rally, she's back on stage at BCA's 10-year anniversary fundraiser, held at a chic downtown art gallery. Fresh flowers are everywhere, and bartenders in bow ties pour white wine. "See," Brenner grins, greeting a visitor as a friend envelops her in a bear hug. "Even radicals can do elegance."

Yet the small talk doesn't last long. Addressing the crowd, Brenner remarks that it's customary at such events to observe a moment of silence for friends who have died.

"But those of you who know me know that I don't think silence accomplishes anything," she says. The audience begins to chuckle. "So I invite you to shout and clap and whistle and make as much noise as possible."

The room erupts: a cacophony of anger, sadness, and hope. Brenner looks around, and smiles.