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Posted on Sun, Oct 7, 2012 : 6 a.m.

Breast cancer awareness: the problem with pink

By Betsy de Parry

2 more stickers 001.jpg

In honor of his father Brock, Adam Bowles designed a pink ribbon with blue. Brock’s wife Kriss put the design on stickers and hands them out wherever she goes.

Kriss Marcacci-Bowles

Pinktober is upon us: Breast Cancer Awareness Month. Oh, I'm aware. Just in the last year, the disease claimed two of my friends. Another is battling a frightening recurrence. But I'm no more or less worried about her than I am about my friend who's in treatment for lung cancer. Or the people I know who have lymphoma and colon cancer and prostate cancer and... well, the list goes on.

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?

Betsy de Parry is the author of Adventures In Cancer Land. Find her on Facebook or email her.


Robert P.

Thu, Jan 10, 2013 : 9:38 a.m.

Sorry if this is a long post, but many questions to be addressed. As far as what type of cancer gets the attention AND money for research goes, I think with the increase in the RATE of incidence of very nearly every disease known to man that it is time to listen to common sense and admit that when science rules out every man-made everything as the cause for any disease that science is wrong and accept the fact that we ARE causing it. (examples: aluminum doesn't cause Alzheimer's & vaccines doesn't cause autism etc etc etc) Let's face the fact that even if we can't pinpoint what chemicals are causing what doesn't mean that man-made synthetic chemicals aren't causing the increases) I watched a medical researcher on the TED website go on about how him and his team have identified that our bodies contain 30,000-50,000 chemicals that our great-grandparents were never exposed to. All of these new chemicals are oil based synthetics, not to mention that thanks to coal fired power plants and nuclear testing every square inch of this planet is now coated with radioactive uranium(and a couple others). No one in their right mind can honestly say these things don't have serious heath consequences. Science is designed to test 1 variance at a time, it can't test the thousands of things we now have in us. Working from the safe assumption that humans are the main cause of cancer(check out the history of cancer, before the widespread use of coal for heating in the 1700's, cancer was very rare) it matters less(never said matters none) what cancer we research as long as we are researching. The finding in one will help guide us in others. The real problem comes from the fact that as I mentioned science can NOT test for cause and affect with the number of chemicals we have been exposed to, so probably the best we can do is to find more chemicals/therapies to combat the problem. It means while we can probably cure it, we can never prevent it due to too many chemical combinations..

Robert P.

Thu, Jan 10, 2013 : 9:05 a.m.

I can answer a few of those questions, the answers are quite simple really. The reason why female breast cancer gets so much attention compared to other types really boils down to the fact that for one reason or another women associate their breasts with their "womanly'ness", to such a degree in fact that if they are threatened with losing them most go all to pieces mentally.(and men love them too). Men have much the same problem if they are diagnosed with testicular cancer. The difference is that when men get either breast or testicular cancer the removal of the affected parts isn't readily visible. It is actually a sad commentary on the mental strength of humans(both sexes) that we identify not only our sexual selves, but our very self worth on whether we have this or that bit of tissue removed or not. We, as a species will be much better off when we realize that we are so much more and that outward appearances do NOT make us men, women, or human. The fact that the annual death rate has stayed about 40,000 for the last 20 years is an amazing testament of the progress we have made in curing the disease. Not only do we have a lot more people than 20 years ago, but the RATES of almost every disease is increasing faster and faster. So the fact that we have managed to keep the deaths to the same number is amazing. we have a LOT more people getting breast cancer than 20 years ago but no more deaths. Look at it this way, would it be better to have 100Mil people with 100k getting breast cancer and 10k dieing or would it be better to have 200Mil people with 350K getting breast cancer and 10K. From a survival standpoint the 2nd example is so much better than the 1st. That is where we find ourselves today. So let's not knock the fact that the same number die because if we hadn't made great strides in the treatment then in my example 35k would have died from cancer.(numbers are purely made up to show context). But a similar type of increase would have resulted.

Rork Kuick

Tue, Oct 9, 2012 : 3:34 p.m.

Some good points (as usual) however: There might be less disparity in outcomes if we had more universal health coverage. So one thing we can do is vote with that in mind. I'd like single payer if I had a choice, but Romneycare is better than nothing. There could be more research if we increase the NCI budget. I like that method. (Disclaim: I am partly funded by NCI to do cancer research). Finer points: The number of deaths not diminishing doesn't mean there's been no advance. There are more people now than 20 years ago, and they are dying of other causes less, so they have more chance to develop cancers. One way to help reduce metastatic disease is by killing tumors before they become metastatic. Also, any research on new treatments for any cancer might not say "metastatic" in the title, but would hopefully be useful for both primary tumors and mets. Mets can have greater genetic diversity though, and you have to kill them all. That's hard. Another point worth making is that breast cancer research and similar research on other very common cancers does lead to spin-offs in fighting less common cancers. For example Trastuzumab (Herceptin, it is anti-ERBB2) is being tried in other cancers that have over-expressed ERBB2. Adrenal cancer is never going to get the kind of money breast research gets, cause almost nobody gets it, but especially from pharmaceutical companies who know there's no profit in it.


Tue, Oct 9, 2012 : 4:36 a.m.

I am a patient-member of METAvivor. We have NO paid staff. Unless otherwise noted, 100% of funds donated go directly to our research grants which are grants geared specially to metastatic breast cancer. Watch for our latest grant award announcement sometime this month. Also, go to MBCaware to spread the word! Thank you SOOOOO much. Kayce


Mon, Oct 8, 2012 : 12:31 a.m.

This is a great article. Thank you! If anyone is interested in donating directly to metastatic breast cancer research, they can do so at

Debi Walsh

Sun, Oct 7, 2012 : 9 p.m.

Great article! I am a lung cancer survivor and just a week into October I am being overwhelmed by pink things. A new trend appearing this year seems to be to be 'in your face' preferential treatment for breast cancer survivors -- including 11 parking lots in Columbus Ohio with 8-10 parking spaces each with signs that read 'Reserved for Breast Cancer Survivors'. Survivors/patients of all other cancers have to park their car wherever and walk by one of these up front, mostly empty, 'reserved' parking spaces. Also, JCPenneys salon nationwide is giving free haircuts to breast cancer survivors. Although I am constantly saying that my distaste of pink is certainly NEVER directed toward breast cancer survivors, I refuse to be quiet and watch as other cancer survivors are made to feel less deserving, or less important. Enough is honestly enough.

Jim Rohrkemper

Sun, Oct 7, 2012 : 4:37 p.m.

I am a male breast cancer Stage IV Metastatic patient. I really wonder about the Komen foundation. I was diagnosed a little over 3 years ago, Soon thereafter my sister also was diagnosed with breast cancer, hers was found early so now she can call herself a survivor. She lives out in Bremerton WA and she has even done the couple day walk. She told me that she even wore blue just for me. She said out there they do mention Males getting the disease. I try to spread the word also as much as I can. I have had some handout things made that I pass out locally. I do agree with your article also.

Sali Gray

Sun, Oct 7, 2012 : 3:24 p.m.

Thought provoking article. I use the colour pink, in the UK, to raise awareness of (and funds for) a small charity which gives 'real hair' wigs to children. I organise an annual Pink Car Rally. The charity employs just 3 part-time staff and I volunteer my services, but it is hugely frustating when so many organisations are focussed on helping the big charities who, in turn, can afford to pay teams of fundraisiers. They don't seem to want to help the little charities and yet their help would make such a HUGE difference. I often wonder how the money raised by these large charities compares with the money spent in raising it. I cannot get national media coverage to help me find more pink cars to join the rally, unless I find a 'big' celebrity, or put a 'poorly child' in front of a camera. The story is told on YouTube, through the 'Pink Car Rally Poem'. Perhaps the time HAS come for people to ask how much of their donation will actually go to the charity and what it will be spent on. Many people now do this with Christmas Cards, after finding out that just a few pennies from some 'charity cards' sold in shops find their way back to the charity. It is up to us, the people who have worked hard to earn our money, to find out how the charity will be spending it.

Kriss Bowles

Sun, Oct 7, 2012 : 1:25 p.m.

Thank you Betsy for a wonderful article that I will post and spread to as many people as I can.. For me, it is so important to spread the word about male breast cancer because of Brock. Breast cancer is breast cancer no matter whether it is a male or female, both should have the chance to survive... My thoughts and prayers are with ALL cancer patients and their families, not just breast cancer..


Sun, Oct 7, 2012 : 12:57 p.m.

"the results of the pink frenzy are dismal." Like most projects to show you care, they show you are willing to buy the sticker but when it comes to putting the "Pedal to the Metal" nobody really cares! So, lets skip this "Pink" "Green" "Blue" etc symbolism and just try to solve the problem.


Sun, Oct 7, 2012 : 12:43 p.m.

This is an excellent article. I too have become bothered over the years by the profiteering off breast cancer. I suspect at this point more cash is being shoved into pockets than is going to actual research. Can anybody do a study proving that?

Nile Jordan

Mon, Oct 8, 2012 : 5:25 a.m.

A CPA with metastatic breast cancer did a breakdowns of the Komen annual budgets (public because they are a 501(c)(3)) from 2004 to 2009. We have additional data now for 2010 and 2011, as well. Except for a small increase the year Nancy Brinker took off to be Bush's chief of protocol (a concierge for visiting dignitaries), funding for research has been on a downward trajectory from a high of 27% of revenue in 2004 to the 2011's low of 18%. However, the organization spent 36-39% on administrative, fundraising and money management costs.