Some say breast cancer ‘industry’ has become too much of a good thing

Editor’s Note: This article was originally published Sept. 30, 2004.

In the coming days, Philadelphia’s LOVE Park fountain and the Center City skyline will turn pink.

New York's Times Square will display a 70-foot-tall ribbon made of pink Post-it notes.

Honolulu will have contests featuring giant sculptured-fiberglass geckos, one sporting a pink lei.

And from sea to shining sea, Americans will buy things — M&Ms, bras, toilet paper, cars, you name it — knowing that a portion of the proceeds will go to "cure," "kiss goodbye," "target," or otherwise conquer breast cancer.

But behind the festive fund-raising events and confident rhetoric that mark October as Breast Cancer Awareness Month, the fight against breast cancer is increasingly contentious and splintered. With at least 1,000 registered nonprofit breast-cancer organizations in the United States, there is competition — even occasional legal battles — for trademarks, sponsors, alliances, and the clout to shape political and research agendas. Some groups feel the breast-cancer movement has become too popular — a cuddly, commercialized, cash-laden crusade that is nowhere close to solving the mysteries of the deadly disease.

This week, one such group is launching a chain e-mail campaign urging Americans to "think before you pink" during what it calls "Breast Cancer Industry" month.

The e-mail, signed by feminist author and breast cancer survivor Barbara Ehrenreich, is the work of San Francisco-based Breast Cancer Action, a group calling for better coordination in funding research.

"No one knows how much money is being raised every year. No one knows how much money is being spent every year. No one knows where the money is going," Ehrenreich declares in the e-mail.

The group is not alleging anything nefarious, but rather pointing out that breast-cancer research has become a sprawling, probably wasteful, multibillion-dollar endeavor involving at least 30 federal agencies and scores of nonprofit foundations, pharmaceutical and biotech companies. It's so vast that no one has compiled even the knowable pieces of the puzzle — government and nonprofit contributions to research.

The naysaying does not sit well with the Dallas-based Susan G. Komen Breast Cancer Foundation, creator of the ubiquitous Race for the Cure and a behemoth in breast cancer philanthropy. Founder Nancy Brinker said she has no time for activists' "whining and kvetching. "

"I've been at this almost longer than anybody in the movement," said Brinker, a breast-cancer survivor whose 22-year-old foundation is named for her sister, who did not survive. "Have we come a long way? Yes. Have we gotten where we need to go? No. But it doesn't help to take whacks at one another and stick your tongue out."

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The American breast-cancer movement has indeed come a long way since the late 1970s, when women who had their breasts cut off were not supposed to talk about it.

Thanks to earlier detection and better treatments, death rates have been falling for 15 years, even as the disease has become frighteningly, steadily more common. This year, it will strike about 216,000 women and kill 40,000, the American Cancer Society estimates.

While scientists debate whether mammography actually saves lives, as most breast cancer organizations preach, national health statistics are telling: In the United States, where the movement has ensured that even poor women have ready access to screening, diagnosis and treatment, about 86 percent of patients live at least five years; in Britain, where the national health-care system makes access more difficult, the comparable figure is about 76 percent — and that is dramatically improved since Britain set up regular screening in 1988.

The U.S. movement also can boast breakthroughs, however few and far between. Komen, for example, helped fund the discovery of BRCA1, the inherited breast-ovarian cancer gene. The National Breast Cancer Coalition, led by Philadelphia lawyer Fran Visco, aided the development of Herceptin, the gene-targeting breast-cancer drug.

Still, the movement's inroads have been more cultural than medical or scientific.

Breast Cancer Action and like-minded wave-makers warn against a new enemy — complacency.

"We need to reclaim the research agenda," asserts breast cancer survivor Barbara Brenner, Action's executive director.

Action's idea is to choose several research centers around the country, give them "all the money now devoted to breast cancer research," then focus them on practical questions that activists help define, such as which breast cancers become lethal — rather than on hypotheses that "well-meaning scientists pose. "

This, other activists say, is a bit naive, given the freewheeling nature of science and capitalism.

Besides, money may not be the answer. Over the last 12 years, the National Breast Cancer Coalition — which represents 600 groups, including Breast Cancer Action — has increased federal research funding by more than $1.7 billion and involved activists in spending decisions.

"I thought if we paid attention to this and if we got the scientists more money, we would have the answer by now," said Visco. "You learn fairly quickly how complex the disease is."

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Beyond disagreement over how to push the science, activists and survivors are torn about breast cancer’s emergence as a fashionable corporate darling. The roster of companies supporting the cause reads like a page from Standard & Poor’s. A-list celebrities and designers — Nicole Kidman, Susan Sarandon, Courteney Cox, Lilly Pulitzer, Ralph Lauren, to name very few — gladly lend their glitz to fund-raising.

"Ten, 12 years ago, you couldn't get a company to be involved," said Debra Schatz, 57, of New York, a 17-year breast-cancer survivor and founder of pinkribbonjewelry.com. "Now, everybody is involved. I think it's great. If it seems like it's a little obnoxious, too bad. I know it's a marketing strategy for all these companies. But to me, it's OK. "

Breast Cancer Action doesn't think so.

Like the National Breast Cancer Coalition, Action accepts limited funding from select companies, lest it lose credibility. It urges consumers to be just as discriminating and "think" before buying pink-ribbon products: Does the company gain far more than it gives to the cause? Does the company make things that may be environmentally linked to breast-cancer risk?

"In many cases, the money raised by these campaigns goes to organizations — such as the Susan G. Komen Breast Cancer Foundation — that support research that does little to bring us closer to truly preventing the disease," Breast Cancer Action says — without offering proof.

Action also takes swipes at Avon's "Kiss Cancer Goodbye" lipstick campaign, Yoplait's "Save Lids to Save Lives," Eureka vacuum's "Clean for the Cure," BMW's Ultimate Drive for the Cure, and many others.

"They're entitled to an opinion," said Komen's Brinker, whose organization has given $600 million to breast-cancer education, detection, treatment and research. "We have such a sense of duty and responsibility to the public. We don't focus on what others do. We only focus on what we do and work as hard as we can. "

Well, not always. When the American Cancer Society created a fund-raising event called "Cars for the Cure," Komen took legal action, contending that its stable of "for the cure" events gave it the rights to those three words. The U.S. Patent and Trademark Office disagreed.

In 2000, Komen had a tiff with Philadelphia’s respected Breast Health Institute, which had for many years run the local Race for the Cure. Komen announced that it was creating its own Philadelphia affiliate, which would be headed — to the institute’s surprise — by the institute’s executive director. Lawsuits ensued.

Eventually, Komen and the institute smoothed things over and the institute launched its own local race — for prostate cancer.

As the breast-cancer movement struggles to keep moving forward, there are signs that fatigue may be setting in.

In June, the 18-year-old National Alliance of Breast Cancer Organizations shut down. Its leader, breast-cancer survivor Amy Langer, cited "evaporating ties to corporate donors, competition for individual donors, and a nearly $9 million drop in revenue. "

American Express this year let its five-year "Charge for the Cure" campaign expire after its market research showed customers were interested in causes that affect children, spokesman Nancy Muller said.

Even Komen's newest venture, a three-day race in 10 cities, looks as if it will raise less than half of the projected $50 million, said Howard Sitron, the Jenkintown executive in charge of producing the event. It bumped up against the Avon Foundation's new breast-cancer fund-raising event: a two-day marathon in some of the same cities.