health: Breast cancer awareness: the problem with pink

The problem isn't awareness. It's that what started in 1985 as a campaign to educate women about breast cancer has become a gold mine for pink profiteers, a huge revenue-generating machine for companies that sell the proverbial tin cup of pink products to raise awareness of their own image.

Yep, marketers have slapped pink on everything imaginable. NASCAR drivers proudly race pink cars, and the NFL, despite its — shall I say complicated — history with women, gets on its pink in the name of saving breasts.

Yet the number of annual deaths from breast cancer has hovered around 40,000 for more than 20 years. If results are measured by the only outcome that really matters — fewer deaths — the results of the pink frenzy are dismal.

But let's face it. Breasts are symbols of femininity and motherhood. They're sexy. And sex sells, even if it means turning a deadly disease into a glorified marketing tool. Or a snappy little slogan like "Save the Ta-Ta's," which was on a bumper sticker on the car in front of me yesterday.

Anyone who's read my posts for any length of time knows that I'm a non-Hodgkin lymphoma survivor, so this might sound like sour grapes. On the contrary, but more about that in a minute. My point is that I've pitched stories to the national media about various blood cancer issues, only to be told by — not one — but by several reporters, "If this were about breast cancer, there would be a story. Lymphoma's just not sexy."

Trust me. No cancer is sexy, least of all to the women who actually lose their breasts.

And yet, the exploitation of breast cancer continues. Who knows the number of items available in pink? Not me.

But I do know the American Cancer Society's estimated number of men (yes, men!) and women who will be diagnosed with breast cancer this year: 226,870. And the estimated number of men and women who will die: 39,510.

If there's any good news, survival rates are up, thanks to earlier detection and better treatments. For localized breast cancers, which account for 60 percent of breast cancer diagnoses, the five-year relative survival rate is 99 percent for all white men and women. (The other 1 percent didn't necessarily succumb to breast cancer.) It drops, however, to 93 percent for African Americans. (Relative survival measures survival of cancer patients to the general population.)

Here's the bad news and why the number of deaths has remained about the same for so long. About 30 percent of people diagnosed with early-stage breast cancer develop metastatic disease, i.e., the disease migrates from the breast into other areas of the body. When that happens, the five-year relative survival rate drops to 25 percent for Caucasians and to 15 percent for African Americans.

Says Dr. Max Wicha, director of the University of Michigan Comprehensive Cancer Center and a breast cancer specialist, "Despite considerable progress we have made in fighting breast cancer, unfortunately, metastatic breast cancer is still not curable and accounts for virtually all of the deaths from this disease."

Dr. Wicha has been working hard to change that. His research aimed at attacking breast cancer stem cells offers hope to improve the outlook for metastatic disease. (Read my article about that here.)

But shockingly, funding for metastatic disease research is puny. The National Institutes of Health has, for the last several years, allocated about twice as much to the study of breast cancer than it has allocated to any other type of cancer, yet metastasis gets less than 5 percent of the research budget, according to metastasis expert Danny Welch, Ph.D.

If cure is the goal, why isn't more allocated to understanding and finding ways to stop the real killer? The number of deaths could be drastically reduced if research funding for metastatic disease were equal to the need, says Kelly Lange, vice president and program grants coordinator for METAvivor.

And there's something else. At every stage of diagnosis, African Americans have lower survival rates than Caucasians. The American Cancer Society says that the reasons are complex but can generally be attributed to socioeconomic factors and less access to care among African Americans.

So once again, I ask: if cure is the goal, then — in addition to funding research initiatives that could turn the tide — shouldn't we also be figuring out how to test and treat those who are left behind simply because they don't have the money for or access to the care they need?

The richest and most powerful breast cancer organization, Susan G. Komen For The Cure, stumbled on that front when, earlier this year, it dove headlong into politics and announced that it would no longer fund Planned Parenthood, the only organization to which many women can turn for care but which also provides abortions.

Never mind that Planned Parenthood spent every penny of Komen's money on breast cancer care, screenings and referrals, not a penny on abortions. Nonetheless, in favor of political ideology, Komen was willing to abandon the very women who depend on Planned Parenthood for breast cancer screenings and care.

Its decision set off a firestorm and the organization went into damage control. Within days, Komen reversed its decision, but its reputation remains tarnished. I hope they learned that politics and cancer should never mix.

It wasn't the first time that Komen's motives have been questioned. In 2007, the organization changed its name to include "For The Cure," which it trademarked.

It has since spent an untold amount on legal fees to warn more than 100 small charities, mostly started by survivors who were holding infinitesimally small events compared to Komen's, to remove the words "for the cure" from their fundraising activities. Among the offenders were "Kites for the Cure" and "Cupcakes for a Cure." It's not hard to see why some view Komen as a nonprofit bully.

I understand trademarks, but no one has an exclusive claim to wanting a cure. It's what we all want.

All this controversy distracts, but maybe it can finally re-focus awareness on what's really needed to cure breast cancer — and it's not more pink products or strong-arming little charities. It's critical thinking about how breast cancer can be cured. It's funding initiatives that can make a difference.

Think about it. How much money does the NFL spend on its pink paraphernalia? How much money does NASCAR spend to paint cars pink? How much money do companies spend to manufacture all those pink products? Millions.

If all that money were directly contributed to a researcher who is working on finding a cure or to a man or a woman in need, wouldn't that make a much bigger difference than grown men and companies awashing themselves, their cars and their products in pink? Isn't it time to change the conversation from pink products to productive pursuits?

I get it. Breast cancer is such a popular cause that it's almost un-American not to support pink, but that also makes it difficult to ask the hard questions. When we do, says Gayle Sulik, author of Pink Ribbon Blues, "Well, then, you must hate women. That mentality makes it really hard to say 'What's working? What's not working?' "

And those are the very questions that need to be asked and answered if we really want to cure breast cancer. Or any other cancer.

And that leads me out on the proverbial limb, but I'll go there and say it: Pinktober can feel awfully lonely for those of us who don't merit the pink ribbon. And yet we're the vast majority of people who've been impacted by cancer.

In real numbers, deaths from breast cancer this year account for 7 percent of all cancer deaths. Every one is devastating to a family, but 93 percent of deaths are caused by another type. Do those families cry any less?

And of the 1,638,910 people who hear "You have cancer" this year, 14 percent hear "You have breast cancer." I'd be willing to bet that the other 86 percent are no less frightened.

Has it ever occurred to marketers, to companies, to the NFL, to NASCAR (and yes, to Komen) that those who experience a different type of cancer might feel — dare I say it? — slighted by the disproportionate share of attention lavished on one type of cancer, as if our lives are somehow less important?

If we've learned anything about awareness campaigns, it's that they work, but there's a tipping point at which campaigns — and organizations — can lose their focus and effectiveness. In the case of breast cancer, somewhere along the line pink morphed from being the symbol of a deadly disease to a brand and a cause that is distracting from the real problem and leaving too many feeling like outcasts. And it's not just people who don't have breast cancer who feel that way.

How do you think men who have breast cancer feel? Kriss Marcacci-Bowles knows. Her husband, Brock Bowles, was diagnosed with breast cancer two days before Christmas in 2001. In January 2002, he had a radical mastectomy. Chemotherapy and radiation followed, but the cancer spread — to his ribs, spine, lungs, hips and head. Brock died on Sept. 16, 2004.

Kriss has since tried hard to raise awareness that men can get breast cancer, too. She says she's repeatedly contacted all the breast cancer organizations, including Komen, asking them to include men, but no one's been interested, and she's frustrated that breast cancer remains so stereotypically female. Why, she asks, should men be humiliated and embarrassed by getting a woman's disease?

Undaunted, Kriss continues her mission to raise awareness of male breast cancer. She keeps up a Facebook page, Blue Ribbon -— Male Breast Cancer. And wherever she goes, she hands out stickers with a ribbon that Brock's son Adam designed for his father.

In my humble opinion, that ribbon should become the official ribbon of breast cancer. At least it would finally represent everyone with the disease.

And how about the women whose disease has metastasized? "Those of us with metastatic breast cancer really do feel like the elephant in the pink room in October. We are avoided at best, and shunned at worst, by mainstream survivor groups," says Kelly Lange, herself a survivor of metastatic disease.

It's not the first time I've heard that, but as someone who has had cancer, it's impossible for me to understand why a subset of breast cancer patients is made to feel abandoned by those who share the same disease or advocate for its cause.

The voices of people living with metastatic breast cancer are finally beginning to be heard, thanks to patient-founded and patient-driven organizations like the Metastatic Breast Cancer Network and METAvivor, Kelly's organization, which launched "The Elephant In The Pink Room" campaign. I encourage you to check it out.

Even Pinktober finally has a single day — Oct. 13 - designated as National Metastatic Breast Cancer Awareness Day. At least it's a start to shining a light on the harsh reality of breast cancer, but, says Kelly, "We deserve more than one day of recognition in Pinktober."

As someone who has learned more about cancer than I ever wanted to know, I understand the importance of raising awareness and funds, and I'm very grateful to everyone who helps, but I'm also keenly aware that the efforts need to count for more than raising corporate image. They need to lead to improved outcomes.

And in the case of breast cancer, I repeat, the number of deaths has not diminished. That's why there's no time for complacency. And that's where, I'm afraid, commercialization has led.

We can't be lulled into thinking that we've done our part simply because we've bought pink products and some of the proceeds supposedly go to breast cancer. Often, they don't.

If we really want to make a difference, we'd be better off making a direct donation to reputable organizations which actually do research, fund research or help men and women in need. How about we all challenge organizations — including the NFL and NASCAR — to do just that?

And this October, how about we listen — really listen — to the voices of men and women like Brock and Kelly? Isn't it about time?