My Secret Weekend with Susan G. Komen

I have an uneasy relationship with Susan G. Komen. In fact, ever since I was diagnosed with breast cancer, there’s been a big pink elephant in the room.

Summer of 2009: I’m between surgeries, down one breast and scarred from hip to hip. I’m having a tough time emotionally and the blanketing of the world with pink ribbons isn’t helping. (I’ll never forget wondering who thought it was a good idea to smack the pink ribbon on Mike’s Hard Lemonade.)

People who love and support me give me pink ribbon pins, bracelets and buttons. I don’t want to hurt their feelings, but the last thing I want is to take on the pink mantle. I cannot lose any more of myself to this disease. The thought of someone meeting me for the first time and immediately associating me with breast cancer just doesn’t sit well.

My aversion to Komen got worse when I discovered bloggers like Rachel Cheetham Moro, who died from metastatic breast cancer at age 42. Her exhaustive accounting of how Komen prioritizes awareness over life-saving research is seminal and sparked a movement in the metastatic community, which is rightfully up in arms.

Finally, the Planned Parenthood debacle, which saw Komen sacrifice its mission to serve underprivileged women to make a political statement about abortion, depressed fundraising and nearly toppled the brand.

And yet, this is the organization that brought attention to breast cancer at a time when people couldn’t say “breast” or refer to cancer as anything other than “The Big C.” This is the organization that mobilized millions to speak up, fundraise and come together to create a community and a movement.

This is the organization that has the heft to actually deliver on its founder’s promise to end breast cancer forever.

Hopeful Komen’s PR fiascoes have led it to a re-examine its priorities, I accepted its invitation to the first, all-expense paid blogger summit in Washington, DC, on May 9th and 10th. My goal was to listen. I hoped to hear an honest acknowledgement of past mistakes and a re-commitment to its mission. I also couldn’t miss an opportunity to meet the other invited bloggers, Amanda HudsonRene SkylerRenee RossSam SchuermanNicole McLeanMelissa PaskvanJanice Lynch Schuster and Barbara Jacoby. I wasn’t disappointed and spending the weekend with these women was an honor.

The first day of the summit, Komen scholar and research scientist Dr. Neil L. Spector spoke about his work in the field of translational research focusing on developing more effective and less toxic targeted therapies for the use in the treatment of established breast cancer and ideally as prevention strategies in high risk populations.

My ears perked up when Dr. Spector noted that 20 years ago, 40,000 women a year died from metastatic breast cancer and that number hasn’t budged since. He explained that his mission to serve those women and “not leave anyone behind” is personal.  Five years ago, Dr.’s Spector’s heart was so damaged due to undiagnosed Lyme disease that he had only 72 hours left to live without a heart transplant. Dr. Spector doesn’t have metastatic breast cancer, but facing death as a young husband and father fuels empathy and guides his work.

The second speaker brought most of the room to tears as she spoke of her passion to understand the mechanisms behind brain metastases as it relates to breast cancer. Komen scholar and researcher Dr. Priscilla Brastianos currently leads a multidisciplinary clinic at Massachusetts General Hospital to provide specialized care for patients with brain metastases. Her hope is to identify new therapeutic targets to treat this devastating complication of cancer, which killed her grandmother and, just three weeks earlier, had killed her mother.

We also heard from two local organizations serving the especially hard-hit and underserved populations of DC and surrounding areas. DC Pink Divas is a patient navigation, training and education program designed to combat the higher than national rates of breast cancer in areas of Washington, DC, and Maryland.

The second organization, Nueva Vida, supports and empowers Latino families affected by cancer, and advocates for and facilitates their timely access to state-of-the-art cancer care.

Last year, I volunteered as an independent grant review panel member for the North Jersey Komen affiliate, which awarded $766,000 in grants to fund 21 programs at 15 local community non-profits. The programs provided such vital services as transportation to care, education, counseling, and funding for wigs and prosthesis. It was moving to hear from the real people running these programs and see actual examples of where the 75% of funds raised by Komen affiliates goes in their local communities.

At the end of the first day, we met with the new CEO and President of Komen, Dr. Judith Salerno. On the job for only nine months, Dr. Salerno expressed a real desire to listen, which encouraged me to speak up for the metastatic community, which needs to be invited to the table and heard. We also discussed pink fatigue and pink washing and our hope that new management meant a new approach.

The next morning, I attended my first Komen Global Race for the Cure on the National Mall, which was ablaze in pink. Head-to-toe pink boas, feathers and funny hats aren’t my thing, but the Mall was awash in a stunning display of community. Fellow blogger Janice Lynch Schuster and I made the three mile walk together. It was a beautiful sight and a real pleasure to be a part of a parade of thousands connected by a cause.And this is how Komen reels you in. As noted by writer and breast cancer survivor Peggy Orenstein, Our Feel Good War on Breast Cancer glosses over the ugly (dying from metastatic cancer) and celebrates pink survivors, ribbons, products, overstating mammography’s benefits, and “awareness.”

To date, when it comes to “the Cure,” the numbers don’t even come close to supporting the rhetoric. For 2012, the last year for which financial reports are available, Komen raised $428,897,000, of which $69,146,000 was dedicated to research. That means only 16% of the funds raised went to research and, of that 16%, not all of it was devoted to research on metastatic illness.

This is my quandary and, as I confessed to Dr. Salerno, the reason I kept my trip to DC a secret. Although I was heartened by her willingness to listen, and the good work of Dr. Spector, Dr. Brastianos and the community-based grantee organizations inspired hope, until and unless the metastatic community receives its fair share of the pie, I’m just not comfortable supporting Komen.

But I want to be. I sincerely hope and pray that Komen’s new management team, led by Dr. Salerno, can turn the ship and right its course for the good of everyone stricken by this disease.

Survival > Existence,

Debbie

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