Two weeks ago, I attended my second, all-expense paid trip to Washington, DC, to attend the Annual Susan G. Komen Blogger Summit. I’ve been mulling over what I want to say about the experience and settled on the following:
- The pinkification of breast cancer is still a major issue for Komen;
- Komen still has a long way to go when it comes to reaching out to the metastatic breast cancer community, but a dialogue is hopefully starting; and
- I sincerely appreciate Komen’s attempts to meet the challenge of disparity within the breast cancer community.
On the second day of the summit, I walked the three mile Komen Global Race for the Cure at the National Mall. Of course, pink was ablaze everywhere. Although the ribbon (and its many pink mutations) has never been my thing, it was amazing to see thousands coming together like sports fans decked out in the team color.
If identifying with a team helps another patient/survivor/caregiver feel supported and part of something bigger than herself, I’m all for it.
That being said, Komen’s latest blunder, acceptance of $100,000 from a company which proceeded to paint their fracking drills pink in “support” of breast cancer, most definitely came up during the summit. Marketing officer Norm Bowling admitted that the partnership with Baker Hughes, Inc., was a mistake and assured us Komen now has guidelines in place to make sure that future partnerships mesh with Komen’s mission.
As to the mission, it was presented in three parts:
- closing disparities in the health care system for underserved communities;
- funding and encouraging the work of young researchers; and
- advancing research in the area of metastatic breast cancer.
It’s about time the disparity issue got the attention it deserves. A few years ago, I volunteered as a grant reviewer for a local Komen chapter. Before that, I had no idea Komen made grants to agencies working with underserved populations to provide basic needs, such as child care, transportation, wigs and prothesis, education sessions, free mammograms, and navigation services.
Teena Francois-Blue, of the Chicago Breast Cancer Task Force (a Komen grantee), spoke at the summit and shared a picture of a mammography center in Chicago with an open sewer in the middle of the floor! The sad truth is that these communities don’t have the same access to quality healthcare that many of us take for granted. It’s also true that minority women are less likely to be diagnosed early and more likely to die of breast cancer.
Many of us have said that Komen should spend less on “awareness” and more on research because we’re aware enough. What I haven’t been aware of until recently are the very real disparities of care between the haves and the have-nots in our communities.
I was beyond thrilled to see metastatic breast cancer research equally included in Komen’s mission statement. That development and the inclusion of two stage IV bloggers at the summit shows real progress. I learned a lot about their concerns (their voices were sorely missed last year) and I’m hopeful the dialogue they started will continue and expand.
Continuing with the focus on metastatic breast cancer research, we also heard from Dr.Daniel G. Stover, a Komen grant recipient conducting research in the area of triple negative breast cancer. He was joined by Komen scholar Dr. Antonio Wolff of the Translational Breast Cancer Research Consortium, a collaborative group founded to conduct innovative and high-impact clinical trials for breast cancer.
At dinner the night before the race, we met with founder Nancy Brinker and Dr. Judy Salerno, Komen’s CEO and President, who both spoke about their commitment to the metastatic community. Singer Matt Goss made a special appearance at the race and performed his song “Strong,” inspired by his mother’s strength as she battled and eventually succumbed to breast cancer. One of my fellow bloggers made a video of his performance, which you can see here.
Last year, I returned from the first Blogger Summit hopeful that Komen’s new management team, headed by Dr. Salerno, would turn it in a new direction. I’m glad to report that I am seeing progress. Komen is a big tent, with the resources and heft to represent many different interests. I’m hopeful that its mission statement will continue to take it in a direction that satisfies the needs of all those afflicted by breast cancer.
Survival > Existence,