Five years ago this month I wrote a piece entitled “Who Will be the Next Susan Goodman Komen? Or Nancy Goodman Brinker?” In that post, in part, I wrote “Speaking for myself I think it stems from the amount of funding put towards “breast cancer centers” that have cropped up in nearly every hospital in some capacity. There may be a “oncology department” that sees cancer patients and then there is a “breast cancer center”. So folks with leukemia, lymphoma or colon, lung or prostate cancer go to one area of the hospital while breast cancer patients go to another. Often times the waiting areas and exam rooms are modern, tranquil, well-appointed, even luxurious while the “other” waiting areas and clinical areas are reminiscent of typical clinic or physician office settings with older furniture, no overhead music, fountains, espresso machines or concierge services at check-in. A recent Facebook post I caught tripped me to thinking about this again.”
Now 5 years later there seems to be another movement, particularly within the metastatic breast cancer community. And again, 5 years later, several Facebook posts tripped me into thinking about this again. Specifically, an organization named METUP (http://www.metup.org).
According to their website (last accessed as of this writing), “METUP is a diverse, non-partisan group committed to direct action for a viable cure for breast cancer. We protest and demonstrate; we meet with government and health officials and researchers; we support research into metastatic disease; and we speak out against the sexualizing of breast cancer. We are convinced that the deaths of women and men from metastatic breast cancer are a paramount issue, and we pledge ourselves to oppose all who deny the reality of the 522,000 people who will die from metastatic breast cancer globally every year while waiting for a cure to be found.” There is an entire burgeoning community of voices that want to make their stories heard among many who are comfortable speaking about Stage IV breast cancer that can be found at http://metup.org/index.php/our-community/.
One of the organization’s co-founders is Beth Caldwell, a mother of two who has been very vocal in this space and blogs at The Cult of Perfect Motherhood. A recent update on Beth’s Facebook page included “I’m dying because we are wasting money on pointless breast cancer awareness campaigns instead of funding breast cancer research. PINK IS NOT A CURE. RESEARCH IS.”
The organization’s Twitter page has many associated hashtags such as #IAmSusan #PinkIsNotACure #PinktoBlack #diein #DyingForACure #1430EveryDay in reference to the number of women and men worldwide who pass each day from metastatic breast cancer.
As you can see from METUP’s logos’ even the pink ribbons we have all become very familiar with are black and tattered.
How did we as a society get here? Was I so wrong 5 years initially suggesting dedicated breast cancer centers were, after all, really missing the mark? Did I, and have I continued to think that Pink was A Cure? That Thinking Pink and wearing Pink Ribbons on my lab coat was meaningful?
Have we put billions perhaps into awareness for early stage detection and treatment and only a small fraction of that into high stage therapies and management while sexualizing and exploiting the disease itself?
While I have never shaved my head, it wouldn’t be much of a stretch to do so with what little remains, I have supported those who have on this forum and elsewhere. But has it made a difference? Have we made a dent in median survival for patients with metastatic breast cancer? The data over the past 20 years would suggest we have not. Perhaps, more importantly, metastatic breast cancer is on the rise among women under 40, and has been for the last 30 years.
According to METUP.org, a 2014 A 2014 study by the Metastatic Breast Cancer Alliance found that only about 7% of all breast cancer research funding goes towards researching metastatic disease.
So, here we are, another October, another National Breast Cancer Awareness Month and another National Metastatic Breast Cancer Day (October 13) passed and pink pumpkins and big tough football players wearing pink shoes and pink gloves; even the vaulted NFL shield is back dropped by a pink ribbon now and only about 7% of all funding raised from all this goes where it may be needed most.
Where does this leave us today until Mother’s Day comes around again and baseball players bring out the pink bats and pink cleats? And next October?
Perhaps the collective lesson learned is awareness is not equal to action, the action being active research where it is needed most, to improve overall survival and quality of life rather than supporting bra-free days or pink ribbons for your mailbox or shaving your head.
As a pathologist, our ability to diagnose high grade disease seems out of proportion to our ability to treat high grade disease. The number of people afflicted and the number of deaths daily considering all of the advocacy efforts seems out of proportion to the amount of awareness we have about screening and early detection.
We all need to think about where are these resources are going rather than just thinking pink is the answer.