The Komen aftermath: Where Do I go from Here?

Over the past few days , many of us have wallowed in the sh*tstorm that rose up around the Susan G. Komen organization's decision to prohibit Planned Parenthood to apply for future grants and SGK’s uncharacteristic ineptitude in dealing with the uproar that followed. I’ve attempted to figure out exactly what happened and why, how it matters to me, and why I felt so angry and betrayed by an organization to which I’ve given time, energy and money over the past 8 years. So this is what I’ve figured out.

1. The Susan G. Komen organization has the right to decide who and what will get funding based on whatever criteria they choose.

I know, that seems like such an obvious statement. It’s just that I never thought that they would choose to start down a path which is a clear departure from previous policy without being up front about it. I don’t expect them to ask permission, but I do expect them to be honest. They were not. I don’t buy the spin that this isn’t a decision to follow and align themselves more closely with the more conservative right-to-life political and religious groups that have been pressing their agendas for some years now. Besides the Planned Parenthood “change of heart”, SGK (also quietly) has decided to no longer fund any research using embryonic stem cells regardless of its research potential. One has to wonder what other “course corrections” they are considering?

Again, they have the legal right to make these changes to how they spend their funds. But I believe they have the moral and ethical responsibility to tell us, so that we can decide if there is another deserving organization to which we’d prefer to align with.

2. You can’t have your cake and eat it too.

I believe the reason that SGK wasn’t upfront and public about these decisions is because they knew that there would be some long time supporters who would not like the decisions and the trajectory the organization now seems to be on. In other words, they’d like to keep us in the dark so we’d still give of our time and money. Or perhaps they naively believed it wouldn’t matter to some of us because the SGK organization is so spectacularly wonderful that we wouldn’t care. But I don’t think they are that naïve.

The only other explanation would be that they acted hastily with arrogance and little forethought, were not given (or did not follow) good PR/Marketing advice, and underestimated the power of media and social media. Given the sophistication of the SGK organization this also seems implausible to me. (and if it’s true this is worrisome on an entirely different level)

3. Trust, once lost, is hard to win back.

Unfortunately, I believe we were lied to, at the least by omission and silence. And I believe that when “caught” the organization including Nancy Brinker attempted to “spin” the problem instead of talking honestly and in detail as to what was actually going on. So now of course I have to ask myself what other half truths am I listening to? I can’t help it. That’s the way lies work: you lie, it’s hard to believe you the next time.

4. Breast Cancer isn’t the only fish in the pond.

I originally got involved with SGK to honor and celebrate the survival of my mother from breast cancer. I do not regret one single moment or dollar I spent involved in five 3-Day walks. I’ve met hundreds of people who enriched my life. I’ve danced and hugged women (and men) of all shapes, sizes, backgrounds who all carried different histories and reasons for being at a 3Day. I’ve put my arms around women and cried…and laughed. And I know that working as support crew I’ve given back to walkers and survivors as they made their own journeys.

But life moves on. My mother who so valiantly conquered breast cancer eventually succumbed to congestive heart failure and Alzheimer’s after a two year battle where dignity and laughter were hard to come by. She suffered from diabetes and ultimately had a stroke that took her life. Suncoast Hospice was a godsend in her last stages of life giving her kindness and easing her (and my) fears of the final steps of her life’s journey. My sister-in-law died before the age of 60 due to complications diabetes and congestive heart failure.
In other words there are other diseases to be conquered, other needs to be met.

5. So where do I go from here?

Perhaps I should be thankful in some way to the revelation of SGK’s astonishing lapse in honesty. It has caused me to look in greater detail at the makeup of their board and other decisions they’ve recently made. I believe that SGK is going down a path they have every right to choose, but I will choose not to follow. I believe that their future choices regarding grant funding will use as a litmus test whether the group or method of research is something that the conservative pro-life groups will support or not. I believe this could ultimately hurt the provision of health care services and perhaps retard the advancement of research in the treatment of the disease. If you are REALLY serious at helping women and finding better treatment and yes, a “cure”, these issues should be left at the doorstep. But I don’t believe they will be.

And I don't believe if I refuse to give SGK my money that I'm "hurting" the breast cancer cause.  They are NOT the only organization dedicated to assisting women battle and survive breast cancer.  They are not the only organziation funding breast cancer research.  They are not even the only organization organzing walks and races in the name of breast cancer.
So I am turning my immediate attention to finding other organizations related to hospice, breast cancer, and women’s heart issues. I’d love to hear from anyone regarding organizations that they believe are worthy of my time and energy. Just don’t try to sell me on Susan G. Komen.