What do you think of breast cancer awareness groups? Well managed? Or in need of introspection? Add your comment below.
All this month, the market has been saturated with pink-ribbon products sold in the name of breast cancer awareness, some with dubious ties to good health. How about some pink-certified wine? Or how about a Smith & Wesson handgun with a pink grip and engraved ribbon insignia?
Billions of dollars are raised each year to fight this deadly form of cancer, but many patient advocates and past supporters fear the crusade has been hijacked by Madison Avenue. Companies selling products that contribute to obesity, a risk factor for cancer, are cashing in on the pink craze. Consumer activists point to more corporate sponsorships, branding partnerships, fundraising events and a greater number of nonprofits oriented to breast cancer, some of whom contribute little or nothing to research.
Gayle Sulik, medical sociologist and author of "Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health," complains that far too much of the money raised by the largest awareness group, Susan G. Komen for the Cure, goes to administration and marketing, instead of research.
She notes that as the group's revenues doubled between 2004 and 2010, its allocation to research fell. (Sulik says the percentage of funds devoted to research fell from 23 percent to 16 percent during that period. Komen officials say the drop was from 29 percent to 21 percent.) By contrast, says Sulik, the Breast Cancer Research Foundation allocates 88 percent of its revenues to research.
Ann Maechtlen, formerly of Redding, is one who has lost faith in the bigger organizations. Years before she was diagnosed with breast cancer, she joined in walkathons like the American Cancer Society's Relay for Life to honor cancer survivors. "It was a great thing, especially in the days when people couldn't even talk about the disease," Maechtlen says.
Now, she avoids the parade of pink walkers and product promotions. She feels they trumpet a superficial notion of "awareness," even if some groups do good things with the money raised and promote great solidarity among survivors and families.
"It tugs at your heartstrings, but I can't get behind it anymore," she says. "For the most part, everyone is perpetuating the Big Business of cancer."
Thirty years since the disease came out of the closet, American cities are filled with thousands upon thousands of pink-clad runners. The Komen group, named for a woman who died of the disease, mobilized 1.7 million walkers in races around the world this year.
Avon's walks brought out tens of thousands more. From coast to coast, buildings were illuminated in pink lights, from football stadiums to Atlantic City casinos to the White House.
But is all the glitz and commercialization masking some hard realities?
As Sulik writes, "Breast cancer is not pink, and it's not pretty." These feel-good pinkathons, she suggests, may be distracting our society from more serious issues, such as assessing our progress in researching its causes and prevention, or trying to prevent the disease in the first place by minimizing exposure to carcinogens.
In spite of all the attention it has received, breast cancer remains the most common invasive cancer and leading cause of cancer death in women worldwide. Some 2.6 million U.S. women now live with the disease. According to the National Cancer Institute, there will be 230,480 new cases of invasive breast cancer in women and 2,140 in men in 2011; some 39,520 women and 450 men are expected to die from the disease.
One nagging issue is over-reliance on early detection through mammography. When the U.S. Preventive Services Task Force in 2009 challenged the accepted standard of women getting an annual mammogram beginning at age 40, and suggested that women 50 to 74 get a biennial exam instead, it sent shock waves through the medical community.
The task force found that the tests could cause unnecessary further tests and surgeries, cause anxiety, and subject women to unnecessary radiation.
People hoped mammography would do for breast cancer what the Pap smear did for cervical cancer.
"Unfortunately, it didn't," Sulik said in an interview.
Yet many of the big pharmaceutical and medical corporations have a huge financial interest in mammography, even directly financing these awareness campaigns, she notes.
Meanwhile, charges of "pink washing" abound.
Breast Cancer Action, based in San Francisco, has campaigned for 10 years against groups that claim to "care about breast cancer" yet promote products "linked to the disease."
This year, Breast Cancer Action independently tested Komen's Promise Me perfume. It said the fragrance contained "a synthetic musk that works as a hormone disruptor, and toluene, a potent neurotoxicant."
Hidden behind all the goodwill is an estimated $6 billion-a-year cancer fundraising bonanza for all cancer causes that makes it difficult for donors to know where their charitable donations are going or if their pink purchases are making a difference.
On Friday, California Attorney General Kamala Harris issued an advisory on how Californians can avoid scams by "sound-alike" breast cancer charities. (You can find it at http://oag.ca.gov).
Breast cancer groups have proliferated to the point that Guidestar, the tracker of larger nonprofit organizations, lists more than 1,500 groups nationwide working on the disease.
At the same time, cause-related marketing of breast cancer, in which products are sold with pink ribbons or other tie-ins, has grown tenfold, according to a 2009 study in the Journal of the American College of Radiology.
"People feel good about buying a product or a service that supports breast cancer," says Leslie Aun, a spokeswoman for Komen. "They want to support our movement."
For survivors of breast cancer and their families, it can be very healing to contribute to group activities. After nine grueling months of chemotherapy, Maechtlen joined an organized hike to the summit of Mount Shasta, up 14,179 feet, which raised about $13,000 for the Breast Cancer Fund, a charity she believes in because of its focus on prevention and environmental-factor research.
That's a small amount compared to some of the larger groups, like Komen, which raises tens of millions a year on its races alone. In the Sacramento Valley, 20,000 runners showed up this year, says Lori Anderson with the Komen affiliate based in El Dorado Hills, whose Gala for the Cure raised $96,416.
Breast cancer is among the most popular causes, says Daniel Borochoff of the Chicago-based American Institute of Philanthropy. "The breast is a beautiful part of a woman's body," he said, "making it easier to fundraise for" than some less attractive-sounding but more severe cancers, such as colorectal.
Its easier marketability has attracted scam artists.
"The breast cancer nonprofit world is a minefield of deceptive practices," says Borochoff.
Some have names disguised to sound like bigger, more trusted groups; others have engaged telemarketers to raise funds fraudulently, lie about funds dedicated to treating or transporting cancer patients and/or otherwise find ways to launder cash.
Even with larger, respected groups, it's important to follow the money.
AIP's Charity Watch guide, for example, rates the Avon Foundation for Women with a C-minus for spending too much on fundraising, and critiques its blurring the line between its advocacy of breast cancer and its cosmetic products.
Likewise, it blasted the American Cancer Society for putting too little of its solicited contributions ($848 million in 2005, more than any other cancer charity) into its research and assistance programs.
Half of the cancer charities rated by AIP got a D or F grade, and only 37 percent an A or B. "It is sad that cancer charities, one of the most serious and popular giving categories, perform so poorly," AIP wrote.
Two of the top holders of "highest compensation packages" are cancer charities: the American Cancer Society and Memorial Sloan-Kettering Cancer Center, which pays its CEO more than $3 million.
Although Komen has some 200 corporate partnerships with companies such as Ford (with its Warriors in Pink campaign) and American Airlines (which pinked its planes), the organization turns down sponsors from the alcohol and cigarette industries.
"I feel pretty good about the investments we make," Aun says of Komen, which is proud of the $685 million it has raised for breast cancer research over the years.
But could much of this money be put to better use?
"Millions of dollars are being spent on awareness, but have you ever heard of anyone who's not aware of breast cancer, or the need for breast exams?" asks Laurie Styron, AIP's analyst.
In the wash of pink, she and others wonder if foundations and charities are losing sight of what they're trying to accomplish and what their donors desire such as finding cures, ways to support patients, and a real end to this disease.
© Copyright The Sacramento Bee. All rights reserved.
Francesca Lyman, the author of two books, is a Seattle-based freelance journalist who writes regularly for The Bee.
Read more articles by Francesca Lyman


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