I love to celebrate. My friends know that PETscans and champagne go hand and hand. However, I feel the breast cancer movement has become too much of a celebration… to the point that it masks the reality. The general public thinks breast cancer is something to be celebrated. That we are winning this “battle.” We forget people are dying. 111 EVERY Day. This is not something to celebrate.
When we hyper focus on celebrating survivors and beating cancer we unintentionally alienate those who aren’t “winning.” Infact, the focus on survivorship and beating cancer has become such a prominent symbol for breast cancer that those dying of breast cancer feel alienated and forgotten. They feel so strongly that the breast cancer movement doesn’t represent them that they created their own ribbon. It is teal and blue with a small bit of pinkin the center. I find it incredibly disappointing that the people suffering the most, enduring heart wrenching devastation and painful treatments as they face death feel isolated from the very movement that set out to help them. They shouldn’t feel forgotten – they should be at the heart of the movement – represented by the most brilliant, deepest pink of all.
I have avision that in addition to celebrating all the people who beat cancer there will be a colossal shift to rallying around those dying. I liken it to the AIDS movement in the 1980s. During the early epidemic, 40,000 men were dying every year—people marched, made noise, and got the drugs to keep them alive. The community rallied around the dying demanding more money for research to help them, demanded people see the heart wrenching pain of the disease. They didn’t just rally around the healthy people and show pictures of smiling people who beat AIDS… they focused on the weakest and the sickest and demanded research to help them.
It is estimated that in the US, only 2-3% of all funding for breast cancer research is dedicated to metastatic breast cancer(1), even though 30% of breast cancer cases become metastatic. This is not enough research aimed at finding new treatments and enhancing quality of life for people like me, living with metastatic breast cancer. That’s why I helped found an organization called Twisted Pink whose sole purpose is to fund metastatic breast cancer research and why my organization, Hope Scarves, now donates a portion of every dollar we raise to metastatic breast cancer research. I challenge other cancerorganizations to broaden their efforts to support research as well.
I dream of a day when the breast cancer movement widens the spotlight beyond celebrating survivors to shine light on those for whom the fight is never ending. That all the survivors will turn inward toward those facing metastatic breast cancer and lift them up and demand more research and support. I dream that when you think of pink you don’t think about celebrations alone, but rather a deep,vibrant pink force for change that will lead to better treatment options and improved quality of life for those with advanced disease.
I dream of a day when women no longer die of this disease… and that I live to see it.
It’s a big pink mountain, but I love a good climb!
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1 EuropeanCancer Journal, www.ejcancer.info/article/S0959-8049(10)00166-8/abstract