What Good Is Awareness If…

…the root causes of breast cancer remain unchanged?

…the information disseminated is inaccurate, incomplete, or decontextualized?

…the messages trivializemisrepresent, or marginalize the disease or the diagnosed?

…the campaign uses sexualized language and imagery to sell itself?

..the campaign intentionally or inadvertently supports products or services that contribute to the total cancer burden (i.e., pinkwashing)?

…the campaign shifts attention and funding toward programs that will not have an impact on the eradication of the disease, and detracts attention and funding from innovative measures and research that will?

…the campaigns, taken together, divert attention from other diseases that do not have the sexiness of the mainstreamed version of the pink ribbon campaign?

What GOOD is AWARENESS?? This is a crucial question for every organization that comprises the breast cancer movement, for every policy maker, organization, or program that allocates funding to cancer related projects, and for every individual who wants to see society’s efforts to deal with cancer result in better care, better treatment, reduced mortality, and reduced incidence.

What GOOD is AWARENESS?? To answer this question, we must consider what awareness can do, what it does do, and what it does not do.

What GOOD is AWARENESS?? To avoid this question because it is uncomfortable or inconvenient, boring or unpopular, is to disrespect the desire to act efficaciously toward the eradication of this disease, to waste the public’s good will, and to throw away billions of dollars that could be better spent.

What GOOD is AWARENESS?? To answer this question with vague platitudes and either/or thinking is to put at risk the lives of hundreds of thousands of people who will not be cured with boobies bracelets, awareness umbrellas, and shower cards.

What GOOD is AWARENESS?

REPEAT.

What GOOD is AWARENESS??

048-boobiesmakemesmile

 

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21 comments to What Good Is Awareness If…

  • Thank you Gayle – another great and on point post!

    Katie

  • Nancy

    A great post. A related question: I am already aware, so now what?

    I would suggest that awareness, once achieved, is no longer enough.

  • Exactly Nancy – we’re aware; NOW WHAT? None of these awareness campaigns take any responsibility for what happens to the women who do happen to get diagnosed as a result of their “awareness”. I found my cancer through BSE, probably because I was aware of something; my body, changes in my breast tissue, the idea of breast cancer etc. But that fact alone is not going to save my life, despite many of these campaign’s assertions that “awareness saves lives”. Why? Because I now have metastatic cancer so when I think about BSE being used as the cornerstone of some of these awareness campaigns, all I can think is BFD! There’s so much more to breast cancer than “awareness”. If only as much emphasis and MONEY was paid to breast cancer RESEARCH. Maybe then we could actually scientifically prove or disprove some of the so-called facts/risk factors that so many of these campaigns rely on in spreading their bogus messages. Maybe we would get better screening methods. Better treatments etc Maybe then we’d have no need to be “aware” of breast cancer because research really could make breast cancer a thing of the past. Another great post Gayle, and such a neat summary of why anymore “awareness” cannot be a good thing.

  • Cheryl

    This is what I’ve been preaching to my friends and family, and darn near anyone who will listen!! We can teach BSE until we are blue in the face but until significant research has been done to reach cures all we will have are just more women sitting in infusion chairs, or laying on the LINAC table.We need cures NOT more cute campaigns which seem to be glamorizing and sexualizing breast cancer. I have to refrain from mentioning to a patient of a different kind of cancer what I’ve had because I’ve been told over and over that I belong to the Pretty In Pink gang and that we seem to get all the advertising attention. I don’t know about them, but I don’t want any attention. I just want to live! Schools around here are banning the Boobie bracelets because the majority of kids aren’t wearing them for breast cancer awareness. They are wearing them to make the opposite sex aware they are available for the “feeling”.

  • Bill Noren

    Excellent article Gayle. Sadly, the word “awareness” has become a substitute for actual action. What’s worse, many people don’t even notice the difference.

  • Mary

    I am no longer alone, at last I am home!!! THANK YOU.

  • There are more of us than you might imagine, Mary. Thank you for being here!

  • Yes, Bill, that is my concern as well. The first step is to notice.

  • It’s all about marketing. The glamor and sexualization. The products. The fun. Cancer is not fun. Sometimes ‘surviving’ it is not even fun. Survivorship can mean living scan to scan, treatment to treatment, side effect to side effect, complication to complication, until there’s nothing left to do. It’s not sexy. It’s not fun.

  • Yes, now what? Exactly. Thank you for your comment.

  • Mary

    Gayle, I have been devouring your book. The Breast Cancer Coalition of Rochester put me on to it. I almost could have written it myself based on research I have done since first diagnosis in 2006. As I am Her2+ an oncologist tried to talk me into Herceptin based on the New England Journal of Medicine’s Sept. 05 edition. I don’t think she realized that the studies gave results based on relative as opposed to absolute statistics. As we tend to think in absolutes a 54% benefit for Herceptin sounds pretty good. All cancer patients should be required to take a statistics course. I could go on and on. Informed? consent is another bug a boo with me. I really am home, aren’t I? Thanks yet again!

  • Thanks, Mary. Yes, an understanding of ‘absolute versus relative’ statistics is crucial. I need to write about that here on the blog!

  • Mary

    What good is awareness if the “cure?” can be worse than the disease! Aaaannnnndddd how the heck did breast cancer become sexy? Isn’t that an oxymoron? Every treatment I have been exposed to has the express purpose of taking the “fe” out of the “fe”male.

  • Gayle, am a new breast cancer patient, and a new reader of your blog. I looked for your book at B&N but they said they don’t stock it, it has to be ordered, hope that will change. Just got a Kindle, so bought/downloaded it through them. Can’t wait to read it!

  • Thanks so much. It’s a bummer that B&N doesn’t carry it…Amazon has been the best way to get the book. Also, check with your public library and ask them to acquire it!

  • Mary

    I have the luxury of having a Nook. I had the book from B&N within 5 minutes of reading the review in the RBCC newsletter. Gayle’s “Pink Ribbon Blues” is right on. I wish it had been around when I was first diagnosed in 06. It would have saved me a lot of research!

  • Powerful, powerful, powerful.

    That’s all that I can say, and I agree 100 percent.

  • RW

    Just found this post. Yes, yes, yes! I remember the first “awareness” campaign with a ribbon–for AIDS. Human nature being what it is, the focus quickly moves away from the scary, icky patients, who are doomed anyway, and remind us of our own mortality, to the uninfected, who can still be saved by taking precautions. Then, once everyone becomes “aware” of how to prevent the disease, we would once again be free to blame those who caught it, since they “didn’t take care of themselves”.

    With breast cancer, it seems that most people believe that if you are vigilant enough, you can detect it early, get the tumor removed, and be carefree and cancer-free once more. They know that’s not really the case for everyone, but they just don’t want to think about it and any further implications, like the possibility of they themselves being diagnosed at stage IV.

    One thing that more awareness leads to is more women being treated with expensive drugs that may or may not extend their lives, while almost certainly decreasing the quality of their lives. Maybe this is too cynical, but it looks like this process:

    1. Increase detection.
    2. Increase treatment.
    3. Profit!

    A relative of mine just died of triple-negative BC, less than a year after diagnosis at stage IV with extensive mets to bone and liver. Maybe chemo extended her life by a few months, but it also cost her so much time spent getting the treatment itself, resting b/c treatment made her so tired (and she was one of the lucky few who got no other side effects), in the hospital when she developed a near-fatal infection, and resting trying to recover from the infection that weakened her so much. Quite possibly the infection and its treatment weakened her liver and quickened her death. I’ve seen it alleged that chemo, on average, barely improves life expectancy for people with BC. It’s great if you win that lottery, but what if you’re one of the losers? Well, you’re not around to complain about it afterwards or sue for wrongful treatment.

    Sorry if this is not appropriate here. I just need to vent these thoughts away from my family.

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

** MORE MEDIA LINKS **
** MORE RADIO INTERVIEWS **