Komen is nothing more than a glorified event planner, hosting races and events, raising lots of money. Good times! Despite its slogan, “For the cure,” very little of that money is allocated toward research.
Beth Caldwell, who writes the Cult of Perfect Motherhood blog, just came back from the San Antonio Breast Cancer Symposium where she met with a representative from Komen to discuss this very issue. She posted this on Facebook:
This week, Kelly Shanahan and I had a conversation with Powell Brown, a member of the scientific advisory board for Komen. We explained to him that the metastatic community is largely dissatisfied with the small percentage of funding that Komen spends on research, since research is the only thing that will save our lives. I told him that they need to change their split between the national and the locals so that more money is available for research. His response was that he doesn’t believe Komen will change that ratio, and that Komen would not begin funding more research until the metastatic community gets behind Komen. He said that if we want Komen to spend more on research, we should participate in their fundraising efforts. He said that more fundraising would mean more money available for research. I told him there was no way that our community could get behind an organization that chooses to spend its money on things other than saving our lives, especially given that there are other organizations that spend a much larger proportion of their funding on research, including BCRF, which now outstrips Komen in dollars spent annually on research. His response was that if that’s how we feel, we should just support BCRF instead. And he walked away.
This is what a national leader for Komen feels about the metastatic patient. We are disposable because we don’t fundraise for them. Do not let them fool you into believing they care about us. Our lives don’t matter to them. And that’s why Komen is irrelevant to us. We must and will save our own lives.
[Reprinted with permission.]
Are you as outraged as I am? This is not an isolated incident. Komen sees metastatic patients as a nuisance. A bunch of loud-mouthed complainers who don’t pull their weight. Like problem step-children with too much attitude. Much better to cater to happy survivors who look pretty and run races.
How did Komen stray from its original mission of fighting for a cure in honor of its namesake? If Komen had any heart and truly wanted to fund a cure, it would have the backing of the metastatic community. Like any corporation, it has to win its donor’s time and money by the way it chooses to allocate funds. It doesn’t work the other way around. Not to mention that many Stage 4 patients are too ill to raise funds and run races. It’s all they can do to raise and run their own families.
I am not metastatic. I have been in the NED zone for five years after being diagnosed at Stage IIB, but I too am a big-mouthed complainer. Frankly, I’m appalled because I care about those who have been diagnosed with a disease that will ultimately prove fatal. It’s highly disturbing when I see the increase in young women with metastatic breast cancer. I want to cry and scream every time I see “another one bite the dust” and leave small children behind to grow up without a mother. It’s the 21st Century’s consumption. Something is terribly wrong and I wish to God that somebody would figure out why and fix it.
It is estimated that 30% of those in remission after early-stage cancer will go on to be metastatic. That includes a portion of those with jubilant smiles who run victory races. We have not won the war on cancer. Not in the slightest. We so desperately need more dollars allocated toward research, not more awareness marketing that brings in more money for awareness marketing that brings in more money.
Personally, I’ve never been a party animal and don’t feel a need to participate in survivor fests. I would rather celebrate that I’m still here and make my life matter by advocating for research toward a cure. I wouldn’t give a dime to Komen let alone run its races. It’s nothing more than a big celebratory party where you have to pay for your own dinner.
In my opinion, the best use of your donated money falls into two categories: 1) organizations that help people pay for cancer treatment they cannot afford; and 2) those that raise money for research toward a cure. The first helps people in the present; the other looks out for the future of us all. Of course, any non-profit organization needs to be researched to ensure it’s worthy of your hard-earned money. All non-profits have administrative expenses and salaries to pay. That’s reasonable and their staff shouldn’t live like paupers, but their executive officers don’t need salaries over a half-million dollars a year either. Not to mention names.
Awareness isn’t a bad thing. Many of us cringe at the word because we’re over-saturated by Pink, but we can jump on that bandwagon too. Komen is a name people know and it never occurs to some to give elsewhere. It’s up to us to steer them in another direction. Create awareness. If we all do our part to educate others about alternative organizations that spend our money far more responsibly, together we can make a difference. For the cure!