Originally published on Pink-Link, July 9, 2013
A few weeks ago, I wrote a piece for The Huffington Post entitled “Strangled by Their Own Pink Ribbon” that went slightly viral in the breast cancer and health communities. It gave me pause because I’ve written blogs for HuffPo before that were read solely by me, my publicist and a few bored family members. So the response, particularly on Twitter, was quite unexpected and I’ve been thinking about the reaction ever since.
The crux of the piece was my rationale for finally abandoning The Susan G. Komen Foundation for the Cure after several years and many dollars of fervent support. Thematically, it apparently touched a good many people who felt the same way, or had similar feelings but hadn’t yet given those emotions sufficient air-time. I can understand why. It was very hard to “come clean” and not just a little scary to leave what had become the mother ship for breast cancer fighters. I can compare it to being in a co-dependent relationship that I had to break away from. Granted, I was a willing participant raising money, walking, and being a spokesperson for an entity that was giving me community, hope, and a sense of accomplishing something. The problem of course, was that my intention for raising all that money and rustling up all those supporters was to funnel monies toward the smart people working to find a cure. Once I was convinced that Komen was ill-equipped to meet that expectation, the relationship had to end.
That aside, my decision to jump ship brought me to an unfamiliar place with respect to charities and fundraising. What’s next?
If we’re talking about the mission of finding a cure for breast cancer, every person I know would call themselves a stakeholder in that effort. Every single one. So, what do we do? We give our money away to organizations that either through their brand marketing, personal associations or geography, speak to us, trusting that the good work they purport to do will get done. Or we participate in walks, runs and bike rides, utterly convinced we’re taking action that will result in breast cancer going away someday. This is all well and good, except we haven’t made a dent. In fact, if you added up every dollar we as a country have donated in the last ten years toward that mission, and then tried to make correlations to patient-friendly, actionable “breast cancer breakthroughs,” you would cry. Or howl, like I do, because it’s billions upon billions of dollars with a big zero in the cure column.
Interestingly, a recent TED Talk by Dan Pallotta called, “The Way We Think About Charity Is Dead Wrong” introduced the concept that perhaps we expect too much from non-profits who underpay their talent (compared to the corporate sector) and are vilified for over-spending administrative dollars. He asserts the opposite: that they should be investing big in areas such as acquiring talent, brand marketing and lobbying in order to reach larger fundraising and “endgame” goals downstream. He alleges that we stakeholders irrationally expect to give our money away, have it be used for one narrow or specific purpose, and not have anyone doing the hard work make a good salary. We also don’t want these organizations looking or sounding like real businesses although we expect them to be more effective and honest than the for-profit sector. He has a point. (Ironically, he was closely involved with brainstorming and sponsoring the Komen 3Day events and referenced them as a huge success, although he never used the Susan G. Komen name. He called them “a breast cancer charity.” He’s clearly not in the trust circle anymore, either.)
Dan’s talk was very compelling but felt incomplete to someone like me, sitting on my wallet and staring at my sneakers waiting to feel some sense of trust in an organization that truly understands how to be a charity but has the DNA of a business: transparency, urgency, accountability, clear goals, fearless execution, and honest leaders. In simpler terms: who gets my Breast Cancer Dollars now? I ask the question not to be obtuse, but because I was under the Komen banner for so long – I simply don’t know. I’ve only recently come into contact with some wonderful people here at Pink-Link, the New Hampshire Breast Cancer Coalition, and have been learning more about Stand Up to Cancer, and the National Breast Cancer Coalition with their impressive January 1, 2020 goal to eradicate the disease. I know there is good work being done out there. I’m just still a little uneasy about the whole “trust” thing.
Admittedly, I’m kind of desperate. I’m truly terrified that there might be someone, some brilliant someone, right on the cusp of a giant breakthrough – and they won’t have the funding they need to keep going, even though millions are being donated somewhere for that very purpose. Or that they work for an organization that isn’t on someone’s political radar. Or that those monies went elsewhere, unchecked. It keeps me awake at night.
At the time I finished my book, “Breast Left Unsaid,” I was still hopeful that I had outrun this disease. Just before I published I was diagnosed with a metastases and the term “charitable giving” took on a whole new meaning for me. So, at the risk of reducing a complex issue to a childish schoolyard taunt: prove to me you’re trying to save my life before you ask for my financial support; show me how you’ll avoid the mistakes Komen made before you expect my trust.