While Disease Rampages, Activists Pump Up Firepower

This article about breast cancer activism and activists features Barbara Brenner, Breast Cancer Action’s first executive director. It was written by Lisa M. Krieger and published in the San Francisco Examiner on November 3, 1996.  Barbara Brenner died in 2013. 

Barbara Brenner doesn’t wear a pink ribbon, the pretty new symbol of breast cancer. She wears a horizontal scar across her chest.

“They’re trying to turn breast cancer into a safe thing — ‘Just get a wig and get your makeup redone.’ It has become chic,” she says, angrily. “But your life is forever changed.”

“The fact is, half of us will die. And the sooner we tell the truth, the sooner we will end this epidemic,” she says.

It is no small irony to Brenner that at the same time politicians have discovered breast cancer, she had hers excised.

Last Thursday—the final day of Breast Cancer Awareness Month and a week before Mayor Brown’s Breast Cancer Summit — Brenner, 45, underwent a mastectomy for a tumor undetected by a mammogram.

She is a new breed of activist: angry, impatient, and impeccably educated. Like Andrea Martin of the Breast Cancer Fund and Fran Visco of the National Breast Cancer Coalition, Brenner — executive director of San Francisco-based Breast Cancer Action — is a lawyer and lifelong rabble-rouser, comfortable in the role of combatant.

Their influences were Vietnam and Stonewall and the Equal RIghts Amendment, not “Leave It to Beaver.” Not satisfied with hand holding and head patting, they want a larger investment in research — not just in the area of treatment, but the underlying cause of the disease and ultimately, prevention.

Their work has paid off handsomely: In the past six years, federal funding for breast cancer research has skyrocketed from $87.4 million to $501 million in 1996, activists collected a petition with 175,000 signatures; this year, they expect to deliver 2.6 million names to Washington, D.C., demanding a nationwide, coordinated strategy of research.

In California, they were instrumental in writing the legislation for a 2-cent cigarette tax of 1993, now generating millions of dollars for research.

Doctors have eradicated polio, smallpox, and other once-deadly diseases, but cancer continues to cut a destructive swath through modern America. When Preside Richard Nixon declared a “war on cancer” 25 years ago, some said the cure would be found within five years; nobody awaits a single cure for cancer anymore.

What is frightening is the fact that breast cancer—as well as other hormonally influenced cancers, like prostate cancer — seems to be increasing. One in eight women born today will develop breast cancer by age 85; in 1960, the risk was 1 in 14. Breast cancer now accounts for 32 percent of all newly diagnosed malignancies in the United States.

In California, it is estimated that there will be 18,865 new cases next year and 4,605 deaths. Of those whose cancer is localized, chances of five-year survival are 92 percent. The outcome for those with regional and distant spread of cancer is less glowing: 77 percent and 32 percent, respectively.

Part of the increase is because of increased screening and detection. But something else is going on. Researchers suspect agents in the environment, now or decades ago, that disrupt hormone regulation.

The causes of breast cancer remain a mystery. The known risk factors — certain genes, a family history, early menstruation, late menopause, or having a child late in life — all seem linked to long-term estrogen exposure, but are hardly avoidable. And the vast majority of women with breast cancer have no known risk factors at all.

Nor is there protection from the disease. Mammograms don’t prevent cancer; they only find it. And although they are the best diagnostic tool available, they are imperfect, missing 40 percent of tumors in younger women. Moreover, by the time a tumor shows up in a mammogram, it could have been growing for several years — much of that time having access to blood vessels that can carry stray cancer cells to vital organs. 

What activism has accomplished

The plodding pace of research has caught the attention of politicians such as Brown, who will host a regional summit at Yerba Buena Center next Saturday for several hundred researchers, activists, outreach workers and doctors to connect with each other and discuss the direction of future research.

The Breast Cancer Fund of San Francisco bankrolls new Bay Area-based science and funds the innovative Bay Area Breast Cancer Study Group, a coalition of local scientists and advocates that meets monthly to discuss risk factors.

And together with environmental activists, they have won a guarantee that a Chevron incinerator in Richmond will be closed next year, blocked construction of a new power plant in Bayview-Hunters Point, and created a ban on pesticides in San Francisco’s parks.

Time for hard questions

“Politics is in my blood,” said Brenner, who grew up in a tight knit Jewish neighborhood in the northwest corner of Baltimore. “A social conscience was an important part of my upbringing.”

She recalls, at age 10, hearing Martin Luther King speak at a civil rights march — and discovering, in awe, that people would walk down the middle of a street for something they believed in.

She was gassed at the White House in anti-war protests, supported the push for the Equal Rights Amendment, and joined the political fight against Anita Bryant’s anti-gay crusade.

From Smith College and then UC’s Boalt Law School, she joined the law practice of now-Superior Court Judge Donna Hitchens. She served on the board of directors of the American Civil Liberties Union and became partner at the public policy law firm of Remcho, Johansen, and Purcell.

Then came breast cancer. Only 1 centimeter in size, the tumor transformed her life. First there was surgery, followed by chemotherapy and radiation. Then, last October, she found another lump — and three days ago, again underwent surgery.

“It’s time to ask the hard questions,” she said, “not this polite ‘Can we please sit at the table?’ advocacy. We need much more urgency.”

Shirley Temple Black

Early activists tended to hide their scars behind padded bras. Many were women who had lived apolitical lives — but who became suddenly radicalized by their diagnosis. Among the first to speak out were Shirley Temple Black in 1972 and Betty Ford and Happy Rockefeller in 1974, followed by Nancy Reagan, Erma Bombeck, Gloria Steinem, Linda Ellerbee, and Olivia Newton-John.

They helped change the traditional doctor-patient relationship, confronting what they believed were paternalistic and condescending attitudes toward breast cancer, criticizing conventional treatments as “slash, poison. and burn.”

But much more was needed, they realized, than just collecting signatures and making polite phone calls.

On a warm June day in 1991, in a law office in downtown Washington, D.C., seven groups — the National Association of Breast Cancer Organizations, Y-Me, the Women’s Community Cancer Project, Can-Act, The Mautner Project, the Faulkner Breast Center, and the Greater Washington Coalition for Cancer Survivorship — joined forces to create a more organized advocacy. Dozens of others have since joined.

These newer, louder activists bring to the movement a lifelong tradition of activism — and with it, much higher expectations.

“We aren’t about just raising money,” says attorney and feminist Visco. “We are not ‘The Ladies Auxiliary’ of the National Institutes of Health. We want to say how it is spent.”

Women of the ‘60s 

“The women of the ‘60s are beginning to be diagnosed,” says Visco, 48, who as a college student worked with Vietnam War conscientious objectors. “We’re not used to keeping quiet. We don’t back off and say ‘Oh, gee.’”

Says Nancy Evans, 58, of Breast Cancer Action: ‘If I had to get breast cancer, I was in the right place at the right time … I didn’t take my diagnosis personally, I took it politically.”

Following in the footsteps of AIDS activists, they are making an organized challenge to biomedicine, teaching themselves the vocabulary of oncology and using it to change how their conditions are conceptualized, treated, and researched.

A “Fax and Phone Alert” network now connects women in all 50 states, who inundate Congress with tough-on-cancer messages at a moment’s notice.

They work to make an impact “on the inside,” gaining greater leverage in treatment controversies, representation on NIH and FDA advisory committees, institutional review boards at local hospitals and research centers, and the community advisory boards established by drug companies.

Angry that women are being blamed for their disease due to “bad genes” or delayed childbearing, they are pushing for more research into cancer causation.

It is an uphill battle. Unlike AIDS, caused by a known microbe, breast cancer has no single culprit to be targeted. And while AIDS caught the research community unprepared, cancer has a deeply entrenched system of research, reluctant to change. AIDS can be prevented; breast cancer can not.

FInally, AIDS hit a single well-organized community of patients, while breast cancer cuts across all strata: rich and poor, urban and rural, old and young.

But this same fact is what makes cancer so impossible to ignore, says Brenner.

“The truth is, it’s on the map now. There is entirely too much of it around to ignore,” said Brenner. “Now, the question is, what will we do about it?”

Bay Area toll

 In the Bay Area, breast cancer has in recent years claimed the lives of:

  • Connie Wofay, 53, a UC-San Francisco professor of medicine and co-director of the AIDS program at San Francisco General Hospital;
  • Judith Braude Balderston, 67, UC-Berkeley research economist;
  • Lacey Fosburgh, 51, a novelist and longtime San Francisco correspondent for the New York Times;
  • Odia Coates, 49, soul singer and wife of UC-Berkeley anthropologist Shelby Givens;
  • Evelyn R. Frank, 46, staff attorney with the Legal Aid Society;
  • Bonnie Chastain, 50, radio news director for station KOIT and the wife of Channel 5 TV news anchor Dave McElhatton;
  • Erna “Kitty” Sparer, 65, a member of the underground warfare of the Resistance in occupied Europe in World War II and a leading advocate for the elderly in this country;
  • Erica Sherover-Marcuse, 49, the widow of political philosopher Herbert Marcuse and the creator of pioneering anti-racism workshops.
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