If you have watched the film Pink Ribbons Inc you will be aware of the story of Charlotte Haley who designed the first breast cancer awareness ribbon, which was a salmon or peach pink shade. When she was contacted by Evelyn Lauder of Estee Lauder who wanted to use it she realised that it had more to do with their profit margin than raising breast cancer awareness so she said NO. They then changed the shade of pink and used it anyway.
Since then the Breast Cancer Awareness Ribbon has been used to raise billions and has become, for some of us, the symbol of the exploitation of a disease which kills about 450,000 people globally every year. Where has the money gone? What has the money achieved in the actual ‘battle’ against breast cancer? Why does over 95% of the research funding go to early stage breast cancer research, and only 5% to Metastatic Breast Cancer which is the form of cancer which kills. It is the ultimate symbol of cause marketing to make money. Quite what has been achieved? Answers on a postcard …
December 29, 1922 – February 2, 2014 Charlotte M. Haley, the original creator of the breast cancer awareness ribbon, died February 2nd in Simi Valley, Ca. Charlotte became well known through a documentary titled, Pink Ribbon, Inc., which highlighted the profit motive behind the use of the breast cancer ribbon campaigns, that she started in 1991. Charlotte and her late husband Robert G. Haley were both active participants at the First Presbyterian Church, community theatre, Goodwill, PEO/BIL. She is survived by her three children Leslie, Nancy and Robert, 5 grandchildren, 2 great grandchildren, and her sister Iris. A memorial will be held at Trinity Lutheran Church, Simi Valley, CA. on 15 March, 2014. http://www.firstrunfeatures.com/pinkribbonsinc/ .
Published in the Los Angeles Times from Mar. 14 to Mar. 15, 2014
– See more at: http://www.legacy.com/obituaries/latimes/obituary.aspx?n=Charlotte-Haley&pid=170154738#sthash.KGGeDA4g.dpuf
Keep on keeping on and tweet away.
As a result of social media pressure, Kohl’s has finally reached out to METAvivor. As they open a dialog we must continue to apply the pressure. Continue tweeting because all of your tweets have an extensive reach. Every tweet brings both pressure to Kohls and Komen, andeducates. Keep up the great work and continue to help METAvivor.
The Pink Ribbon has steamrollered over breast cancer, and while its message might be reassuring and safe it is not the real message. The real message of breast cancer awareness is that Metastatic Breast Cancer still kills about 450,000 people globally each year. The real message is that even if the cancer is caught at an early stage about 30% of these people will have their cancer spread to other parts of the body, and when this happens modern medicine will not be able to cure them. A bit more sobering, and a bit more stark isn’t it. It is not reflected in the up beat message of the Pink Ribbon and that is why it is all but ignored.
The Pink Ribbon is not only synonymous with breast cancer, it is also synonymous with glamour and celebrity; with cosmetic companies and their pursuit of the perfect image. How can you be perfect when your body has been mutilated by the surgeon’s knife, poisoned by chemo and irradiated? Who do you associate with breast cancer? Liz Hurley, Katie Holmes or Angelina Jolie? Or someone less starry? At least Angelina Jolie tried to start some sort of awareness about the risks of breast cancer, but it was made to sound as though this genetic fault is the main cause of breast cancer. This is awareness and prevention at its most public and most glamorous; a real life ‘A List’, red carpet walking, partner of Brad Pitt, celebrity has spoken and the world has listened. The problem is that breast cancer is not that simple, and it sure as heck isn’t that glamorous. It also is not all about a lump, or a naughty gene; it is about the words ‘you have cancer and it can’t be cured’. It is also about being able to have that kind of screening and surgery at Jolie’s age, and about being able to afford the treatment in many countries.
Can’t be cured? But what happened to all that money that has been donated to find a cure, to raise awareness, and isn’t raising awareness the same as a cure? You mean actual people still die from breast cancer? Real, actual, people, die?
When Elizabeth Edwards died of breast cancer a few years ago the main focus of the coverage that I was aware of (I live in the UK so no one really knows her here) was that her husband had ratted on her, and should she forgive him. The fact that she died was secondary to her husband being unfaithful and cheated on her. It was about rescuing his political career and image as much as about the cause of her death. Why do we instantly become brave martyrs the instant we have a diagnosis of Metastatic Breast Cancer? I am sure as hell not brave and to me a martyr is someone who dies for a recognised cause. I don’t see that Metastatic, Inflammatory or Male breast cancer is yet recognised properly, or at least not by the powers that be. At the moment we are voices crying in the wilderness. They don’t see us as a challenge to their authority because they rarely even think about us at all. They do that because we don’t have a loud enough voice. And because our voices keep dying. Worst of all there are new voices that follow us and have to start at the beginning again, when they have enough to deal with already.
Advocacy is worth the effort because no one is coming forward to represent us. We have to do as much as we can until the Pink Ribbon tells the real story of breast cancer, and not just the easy slick public relations inspired message. It isn’t easy, but every time I try and do some advocacy I feel as though it is another drop in the ocean of reality and that eventually we will taken our place at the centre of the real conversation; the conversation about less toxic treatment, support and inclusion of Metastatic, Inflammatory and Male breast cancer.
This is a piece I wrote In Memoriam on Inspire about my cyber friend. Missing her already.
Shelli, aka TiaraGurl died on 13 or 14 February 2014 (It is difficult to really tell with the time difference, I am in the UK). A wonderful and feisty woman who was blessed with a beautiful singing voice, Shelli was very active on facebook until recently and had a wide circle of friends who responded to her no matter what time of day it was. She was 49 years old and had a grown son, Brad, who was with her when she passed.
Shelli was first dx with Metastatic Breast Cancer in 2009 and she joined Inspire in January 2010. It had been a few months since she posted and in December 2013 she had WBR to try to deal with brain mets. She had extensive bone mets, and on 13 February 2013 she had a rod inserted into a femur, but even the pain didn’t cause her to lose her sense of humour. Evidently she used to exchange text messages in church with a friend who tried so hard not to laugh that she almost passed out. She also wore her tiara to church in her platinum blond hair (or red, or …) and I wonder if she ever wore it when she sang in the choir. I would rather like to think that she did.
Shelli is survived by her son Brad, mother Willa, three sisters, Bethanee, Karri and Kendra, and two brothers Ray and Boyd. I hope I got their names right.
She had a blog called The Dirty Pink Underbelly http://dirtypinkunderbelly.blogspot.co.uk/2013/09/bracing.html and a facebook page of the same name https://www.facebook.com/pages/The-Dirty-Pink-Underbelly/229996733712704 and the focus of her writing was the fact that Metastatic Breast Cancer isn’t PINK and it isn’t pretty and more should be known and understood about our journey. She disliked the Pink Ribbon and thought that we should have something else to represent us … see her blog.
We never met, but she became very special to me as we shared our journey. Eventually she found the strength to embrace that journey with humour and determination whilst railing against her fate and worrying what Brad would do. She gave the alligator a run for its money and got in a few good punches. Shelli make sure your tiara is well fixed in place and have fun with those wings!