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Komen reality not in Dallas

BY KATHY LATOUR | AUGUST 9, 2012

While it appears that the big news about Susan G. Komen for the Cure is coming from Dallas, it's not. The big news is coming from the organization's 119 affiliates, and right now I can envision the small groups of women and men who run these local affiliates sitting with head in hands as they think about what programs will lose funding from the trickle down of the national foundation's debacle.

Yes, the Komen foundation is a mess right now with its leadership dropping like flies. With the newest announcement that Nancy Brinker is leaving (which should have happened months ago), I hope they can find another Susan Braun, the woman who led them for 9 years to a position of integrity in the foundation world.

But forget all that for a minute. The bigger story here is with the group's affiliates, which are found in cities small and large around the country. In many cases, the funds raised from these affiliates provide the only breast health education and screening available in the area. Funds from local affiliates have bought mammography machines for hospitals or funded programs to bring mammography to rural or underserved women of all kinds. It has funded treatment for women who could not have received it.

In the early '90s I was part of a nonproft called The Bridge, which brought together doctors and advocates to help provide timely treatment for uninsured women. We would never have gotten off the ground if the Dallas affiliate of Komen had not funded us, and when they did, it was a stamp of approval for other organizations who knew that the affiliate researched any group it funded.

Remember that 75% of the funds raised by affiliates stay local for programs in the community of the affiliate. Those funds mean the difference between life and death for many women.

I have spoken at events for many of these affiliates, and I can tell you that these are the hardest working women and men in breast cancer today. They work full time jobs and work another full time job fundraising to support programs for the needs of women in their area. They are driven by their own experience or that of a loved one. They are not driven by politics but by the need to make a difference.

Instead of all the negative about Komen national, let's hear from those of you working in the affiliates. Tell us what you are doing in your community. Tell us how a Komen affiliate has made a difference to you or your program.

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COMMENTS

Diagnosed with an aggressive breast cancer in November 2010, at age 30 and days after learning I was pregnant, my treatment plan required a mastectomy and chemotherapy immediately. While in recovery from my surgery, I was terminated from my job at DFW International Airport. Fortunately, my cancer center was able to provide my treatment in part due to local Komen grant funding. Another local organization was able to provide social services to assist me with cancer-related prescriptions and help with COBRA payments through Komen grant funding. As a 1-year survivor, new mom and now Komen volunteer, I can't even begin to express my gratitude toward Komen Greater Fort Worth Affiliate staff, volunteers and supporters. Their dedication to the mission helped save my life. I truly hope the national foundation can regain its integrity and get back to focusing on saving lives. It's a shame that the hard work and wonderful efforts of the local affiliates is being overshadowed by the recent controversies. My heart and my support remains with the Komen Greater Fort Worth Affiliate and their work in my local community.
Roxanne Martinez, Fort Worth, TX
www.team-roxy.com
- Posted by Roxanne Martinez 8/9/12 5:01 PM

Kathy, you know how much I respect the work that you do, and I truly do appreciate your opinion that Nancy Brinker's departure was long overdue. If she never again steps in front of a microphone and speaks of 5-year survival rates, this debacle will have been worth it.

I'm concerned, however, that the work of the local affiliates is heavily focused on a flawed screening mechanism that results in far too many women (and men) being over-treated for BCA that never would have killed them. My hope is that Komen's focus will soon turn to prevention and to science behind improved screening and treatment that will TRULY benefit those who are afflicted with breast cancer. We're spending far too much money creating "awareness" and not nearly enough finding a cure.

Should things change, I and Team THRIVR will once again join the ranks of those supporting SGK's mission. We love fighting breast cancer, but we hate fighting Komen's PR mess.
- Posted by Greg Hoffmann 8/9/12 6:46 PM

You bring up a valid point about the affiliates, but unfortunately, I contacted my local affiliate several times when I was diagnosed 3 years ago. I was unemployed and weeks away from exhausting my COBRA benefits and didn't even get the courtesy of a return phone call. I called them subsequently when I needed guidance on employment issues, and again, radio silence.

While I won't condemn all affiliates, I can tell you that my experience isn't an isolated one. I have met numerous women in the BC community who were treated similarly. If Komen wasn't helping us, who exactly are they helping?

There is also a huge disconnect between 'awareness' and 'detection' and 'prevention' and 'action'. Mammograms are diagnostic tools and don't prevent breast cancer ... but perhaps being more judicious about allowing products that are known risk factors for BC, such as alcohol and fast food (i.e. Mike's Hard Lemonade and KFC)to market their products with a pink ribbon.

Komen has no one but themselves to blame -- and the fact that nearly 24 hours later, they still are not 'in front' of this story on their own Facebook page or on Twitter demonstrates that things HAVE NOT changed there. They are still using the same tired playbook and allowing their detractors to speak for them.

Notice, I'm not even touching the third rail of the Planned Parenthood debacle.

Komen cannot possibly effect change with Brinker still on board. Period. She is tainted and it seems the strategy is to send Miss Nancy on boondoggles across the globe spreading Komen's gospel, out of the harsh glare of the U.S. media -- on Komen's dime, no less.

Was this change or simply pink window dressing?
- Posted by Beth 8/9/12 10:16 PM

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