Karen Heller: Breast cancer causes so easily derailed

Time again for the Susan G. Komen Race for the Cure®, the annual Mother's Day run for the pretty cancer, the shopping cancer, the insistently Barbie pink cancer.

Komen was the eminence rose in the bustling breast cancer business until the behemoth got into a major kerfuffle in February when headquarters cut off funding to Planned Parenthood, which was eventually reinstated.

This year marks the 20th anniversary of Komen's pink ribbon campaign, but the charity still finds itself tied in a rather ugly knot.

Registration for Sunday's race dropped across the country, down 22 percent in Philadelphia. The Komen brand's once impeccable ranking plummeted precipitously, according to a Harris Poll. Joe and Jill Biden withdrew from their annual hosting of a kickoff-weekend barbecue.

"We hope people continue to support Komen for the right reasons," said Leslie Aun, one of six top Komen executives who have resigned since February, her last day being Friday. "It is not about politics - it is about breast cancer. To politicize breast cancer is wrong."

Right. The breast cancer world has long been politicized, and litigious, especially since Komen took the lead, branding itself through trademarks and preventing other charities from using ribbons. The group's obstructions have been dubbed "lawsuits for the Cure®."

That's because there's serious money, and the cancer is as public, fashionable, obsessed about, even fetishized, as breasts themselves. Lung cancer is the leading cause of cancer death among women, while heart disease is the leading killer overall. Yet there are an estimated 1,400 breast cancer charities, far more than for any other illness, the top 20 charities annually raising a cumulative $1.7 billion. "Breast cancer makes a particularly alluring target," Marie Claire's Lea Goldman wrote in "The Big Business of Breast Cancer," noting that "we give to breast cancer forcefully, eagerly, superstitiously . . . a disease dreaded so profoundly that not supporting the cause feels like tempting fate."

Yet, what do all these charities do? The largest funder of breast cancer research is the federal government, $763 million spent by the National Institutes of Health, with an additional $150 million, improbably enough, from the Department of Defense. There's been progress, especially with the 1998 introduction of Herceptin, but science can prove slow.

"Pink is not good enough. Awareness is not good enough. Throwing money at the problem is not good enough," argues breast cancer research advocate Gayle Sulik, author of Pink Ribbon Blues. "I would argue there probably is enough money out there. It's just how that money is being spent. Do we really need boobies bracelets?"

Last year, Komen spent more than a third of its budget on "education." How much more aware and educated do we need to be about cancer? Sulik argues we're throwing a lot of money at the disease, but not necessarily in the right places.

"We need more money for metastatic breast cancer research," Sulik argues, while big pharma focuses on "me-too drugs" that duplicate products already on the market. "We're not investing enough in causation and the environment, looking at how healthy women develop breast cancer."

Dr. Susan Love's Army of Women has been at the forefront of recruiting a million women to participate directly in breast cancer research - "after all, mice and rats don't get breast cancer," she says - while encouraging scientific studies in preventive measures. And, as with all illnesses, there's a need for direct financial support and services for breast cancer patients coping with their disease.

Too many people have been too girlie when it comes to breast cancer charities, shopping and bonding as though pinking the disease were a medical slumber party. They've been big boobs. Charities, some as skilled at marketing as any corporation, attract people at their most vulnerable. Breast Cancer Action, an advocacy group, launched the "Think Before You Pink" campaign to increase transparency of pink ribbon promotions.

But that was started 10 years ago. What it really took was Komen's own missteps with Planned Parenthood, wrongly and openly politicizing breast cancer, to make people stop and think before they run.

at 215-854-2586 or kheller@phillynews.com.

For information on breast

cancer charities: http:// gaylesulik.com/tools-for-action/