Baby Steps

It’s easy to point out problems.  At least it is for me.  So, a few years back when I learned that the Susan G. Komen organization used very little of its large national budget on breast cancer research, I took many opportunities to point it out.

Those of us living with metastatic breast cancer (MBC) were enraged when we learned that a tiny fraction of Komen research dollars went toward research that might help people like us live longer.  We ranted.  We raved.  We were furious.

There are many social media posts and blogs about this topic.  This post takes a different slant.  Mine is about working towards a better outcome.  It’s about putting anger aside and making progress together.

When I attended the MBC Living Beyond Breast Cancer Symposium, a fabulous group of women took part in their Hear My Voice program, a seminar intended to help those with MBC make a difference.  One of the participants, Beth Caldwell, organized a Die-In with others at the conference and later co-founded MetUp, an MBC advocacy group.  Beth, in her blog “The Cult of the Perfect Motherhood” had much to say about Komen and how the organization had been failing in its mission to end breast cancer.  Many others living with MBC wrote similarly themed pieces, including me.

Image may contain: 4 people, including Sandra Spivey, people smiling

We felt like we were fighting for our lives while Komen was selling the breast cancer experience as pink ribbons and tu-tus.  It was all about the brave women (yes, the entire emphasis was on women, even though men get breast cancer too), who “fought valiantly for their lives” for a few months, then were able to put the disease behind them only to celebrate their victories each year at their local Race for the Cure.

When I agreed to speak at the local Race in 2016, I had to reconcile my distaste for the past actions of the organization with leveraging a platform to educate the community about metastatic breast cancer and support my MBC sisters and brothers.  At the Race wrap-up meeting, when everyone was congratulating themselves on a great event, I spoke up.  I pointed out that those living with MBC were upset with Komen and that’s why they stayed away from such events.  I blurted out that there was little for those living with and dying of metastatic breast cancer at the Race, and that it was unacceptable.  As the other meeting members eyes grew larger and larger, my friend and long-time Komen leader Sandy Finestone supported my views and said that the local affiliate and national Komen needed to do something about it.

She was right.

Since then, Komen has a new CEO, Paula Schneider, and a renewed dedication to slashing deaths from breast cancer by 50% by 2026.  The large ship, the USS Komen, is in the midst of changing its course.  It’s not a speedboat and isn’t able to make a sharp U-turn, but it is moving and changing.  For the better.

The Los Angeles Komen affiliate started making changes early on.  For the past six years, they have been hosting conferences to bring the local MBC community together and provide education, support and hope.  I wanted my local affiliate to do the same.

Two years ago, I attended an evening session sponsored by Komen Orange County held at the University of California Irvine.  UCI breast cancer researcher Devon Lawson, Ph.D., and others spoke.  I ended up participating in the conversation so much that Komen Executive Director Lisa Wolter suggested I speak at next year’s meeting.  And I did.

Since then, I’ve been tapped to act as Patient Advocate on UCI’s Breast Disease Oriented Team.  At the monthly meetings, I bring the patient perspective to topics the clinical and bench researchers discuss.  I don’t think they realized the level at which I participate in the discussion.  My association with the local Komen affiliate has made that possible.

In early 2018 OC Komen’s Director of Mission Programs, Ambrocia Lopez, asked me to help get a MBC conference off the ground in Orange County.  I enthusiastically agreed.  More about that in a future blog.

For this year’s race, I was interviewed by the Denise Dador, the health reporter at Los Angeles ABC 7 TV where I was able to talk about the importance of research and the plight of those living with metastatic breast cancer.  I was able to have my voice heard due to my work with the local Komen affiliate.

I believe that by me and others working with the Komen organization we will make important changes.  We will help set the stage for the metastatic breast cancer community and perhaps put breast cancer to bed for good.  So far, so good.