The ever-widening rift in the breast cancer community troubles me. On one end of the divide are women, some of whom are living with or have already survived a bout with cancer, and who live with the fear that it will reappear as a deadly metastatic diagnosis. With them stand millions of women who know it could be them, and want nothing more than to do right by today’s survivors, and protect themselves and loved ones from ever facing breast cancer.
At the other end of the spectrum are the movers and shakers of the breast cancer world…the organizations and people who use this disease to either turn a profit or control the pink-ribbon funds raised based on their own agendas. More than more, they seem to seek to drown out the voices of survivors and, with smoke-and-mirror tactics, manipulate emotions to increase sales.
I feel comfortable speaking for all women who have been diagnosed with breast cancer when I say that we would universally prefer a world in which cancer ceased to exist. We have faced this disease head-on and we know exactly what it can do. We do not ever want to see our mothers, sisters, daughters, fathers, brothers, sons, friends or loved ones…nor yours…walk this path. We want breast cancer eradicated more than you can fathom.
We also know the fear that others have of a future diagnosis. Most of us have lived that as well. We know that it is hard for women without breast cancer to hear that they can’t be kept safe; that there are only limited actions to take, and no vaccines or scans that prevent this disease. We know the frustration when study after study shows that mammograms are simply inadequate, or that early detection does not, in fact, save lives. We know that, as a result, we have left each and every woman hanging off a precipice. And we know that facing that danger is often so overwhelming that we have nourished a collective, yet false, belief that what we really need is awareness.
The problem is this…awareness and education alone cannot prevent future cancers, nor save our lives. The ONLY thing that can is scientific research. So we watch as billions of dollars are spent on efforts to reinforce this false sense of security, even while our lives hang in the balance, and we can’t help but grow angry.
All the more so this is true for those of us living with metastatic disease. While roughly 20-30% of breast cancer will eventually become metastatic and account for 90% of breast cancer deaths, only 3% of the research funding are invested in this area of research. That is 3% of just the research dollars – imagine what a minute fraction that is of ALL breast cancer funds. While I trust that it is not intended, the message is striking: you are dying, and so we have already given up on you.
Despite having been abandoned by the fund-raising machines that use our disease to make money rather than save lives, we are the ones stepping up for clinical trials, we are the ones trying to get the right messages out there, and we are the ones whose voices so often seem to go unheard.
When we seem to come out frustrated and angry, guns seemingly drawn, it is because this matter is urgent. Life-or-death urgent. We simply will not survive if this disease isn’t cured soon, and we need policy and decision makers to hear us. We need everyone to stop seeing pink-ribbon sales as the panacea.
As survivors we don’t argue whether people need to be educated and aware…of course they do. We argue because we do not think that the lion’s share of the limited breast cancer funding should continue to be diverted away from research in an effort to delude ourselves into thinking that we can be kept safe. With rising incidence rates and near-static mortality rates, where exactly do we think our billions of dollars in “education” funding has gotten us? We must stop perpetuating a false sense of security; awareness and education has failed to cure breast cancer because is cannot cure breast cancer.
It is quite a divide that stands between us…one of education vs. cure and profit vs. lives. Those who favor education and awareness have consistently failed to draw a straight line from their efforts to a cure. Until they do, they should not expect those of us who are dying while they educate others to quietly watch the pilfering of funds for anything short of a cure.