Komen Advocacy Summit: What is your story? Will you come share it with Congress?

Guest Blog Post By Sally Dunbar, 3-Day Walker

Hands Up For Hooters, Team Captain

I am a breast cancer warrior. I am also a Political Bozo. Which makes it a bit ironic that I was invited to travel to Washington, D.C. last week to advocate to Congress for breast cancer. Truth be told, I had to look up who my house representatives are. How do you refer to them face to face? And I’m still unclear if D.C. is actually a state! Yeah… a political Bozo — first class.

I wasn’t sure what I could offer the Advocacy Summit last week, or why I got the emailed invitation, but how could I say NO? (For the record, I paid my own way — they do not waste money flying bozos around the country!) I figured I would learn something. I could see our nation’s Capitol. And hey — I could probably recruit for my team! So I went. By way of background, I am team captain of Hands Up For Hooters — a huge Komen 3-Day team that primarily walks in San Diego. This year we also have walkers in Boston, Philadelphia, Seattle and Dallas/Fort Worth. In the past four years, we have raised $660,000 for Komen.

I arrived at the Hyatt on Capitol Hill in D.C. for our first day-long training session on Wednesday, May 1st. There were more than 250 men and women in attendance, including Komen staff, as well as CEO Paula Schneider, and Victoria Wolodzko, Senior Vice President of Komen’s Mission. Throughout the three days, I met many Komen Affiliates from all over the US. I met Komen Advocates Scholars, and Research Scholars. (I didn’t even know what those were before.) I met many women living with metastatic breast cancer who were very moving to hear as well as survivor advocates. I also met many African American women who were specifically invited to help give voice to the black community about breast cancer through Komen’s Speak Truth to Power conference. Oddly, I only met two or three other 3-Dayers. I hear there were 10 registered, but I didn’t meet them. Also, oddly, I met many people who did not know what the 3-Day was! How could that be? Clearly, we need a louder voice!

Thursday our group of more than 250 marched to Capitol Hill. All 13 of us from California met with Senator Dianne Feinstein and Senator Kamala Harris’s office. Then two of us met with my House Representative, Ami Bera, and another group member’s representative, Tom McClintock. Komen had pre-arranged meetings scheduled for us with their Health Legislative Aides for 15 minutes each.

During our meeting on the Hill, we had 4 main “Asks” to request their support of:

  1. To increase research funding to the National Institute of Health (NIH), which includes the National Cancer Institute, from $39B, to $41.5B, despite the president’s proposed budget of a $4.6B decrease. Interestingly 80% of our voters support more money for NIH for Bio Tech research, even if it means raising taxes, because they understand the importance to all of us and our families. This “ask” struck me in that we were advocating for funding ALL health issues, not just breast cancer.
  2. Maintain funding for Early Breast and Cervical Cancer Early Detection (B-CEP) at $275M. This helps low income and under- or un-insured women get early screening and diagnostics before they advance to higher stage cancers.
  3. Co-sponsor a new Komen led bill recently introduced by Representative Debbie Dingell (D-MI), called the Access to Breast Cancer Diagnosis Act, aiming to eliminate the disparity between the out-of-pocket cost of diagnostic imaging and tests. The average patient cost of a mammogram is $231. The average patient cost of an MRI used to further diagnose a suspect mammogram is more than $1,000. How many women will forego the advanced diagnosis because they can’t afford it? This bill will lessen patient out-of-pocket costs, leading to more early diagnosis and more lives saved.
  4. Sign on to the Cancer Drug Parity Act (H.R.1730/S.741) as a co-sponsor. Think about this. You have breast cancer. You need chemo. You go to the clinic for your IV infusion with a $25 copay as this is an office visit and what your treatment will cost. But let’s say there is a newer, better drug for you that comes in pill form. Wow. Easy peasy. No driving to the infusion center. No babysitters. No doctors or technicians involved. No travel. No time off work. You just pop the pill a home. This, however, is paid for under your prescription coverage, which for most of us is a 20% co-pay. My partner on the hill has stage 4 metastatic breast cancer. Her treatment caused peripheral neuropathy which numbed her hands, and ended her career as an OB-GYN. So she has no job. Her current drug co-pay is $120 per month. But when that drug quits working for her, the next step is a drug costing $13,000 a month. Her co-pay will be $3,500 each month. She has a daughter in college and she said if she has to choose between her daughter’s tuition, and one month’s co-pay — well, she is a Mom. She knows what she would choose.

We asked our representatives to support eliminating the disparity between IV and oral chemotherapy treatments, so patients like Kelly don’t have to make these types of decisions.

Honestly, I crammed my head with factoids in preparation for these meetings, yet still felt totally inadequate to speak to these issues. Then a bit of divine intervention arrived in the form of what else? My UBER DRIVER from the airport! “What are you in D.C. for?” she asked. I told her. “Really? I have spent my career conducting advocacy fly-ins for decades. I teach people how to advocate. I am currently a professor of humanities, getting my PHD in… blah blah.” Honestly, I didn’t even understand what her PHD was in. But it was a PHfrikkenD! I asked the obvious — “Whachadoin driving for UBER, Doc?” She replied, “I have to fund my research”.

She gave me two invaluable tips for advocating. “First, don’t wear metal to the Capitol — it sets off the metal detectors.” Check. “Second, forget all the factoids Komen gives you. Just tell your story. And make them cry. THAT is what they will remember.”

So that is what I did. I let my partner explain the details about our asks, as the aides dutifully wrote notes (or maybe finished their morning’s Sudoku puzzle — it was hard to tell). Then I told my story.

“I want to tell you why I paid my own way to come to D.C. from Sacramento to talk to you. 14 years ago I was diagnosed with breast cancer. It scared the begeezus out of me. The doctor didn’t pull my treatment plan out of his hat. It was research from the gazillions of women before me that told my doctors what treatment I should have. And it worked. I am here today. But I learned there was more work to be done because too many men and women are still dying. I started walking and fundraising for Komen, because they were working to end death from breast cancer. I formed my team — Hands Up For Hooters — to walk 20 miles a day, three days in a row in the 3-Day event. To date I have had over 300 men and women join my team and we have raised $660,000 for Komen. We are the hiking boots on the ground in the war on breast cancer, so to speak. I do this so that if I get a recurrence, the research will be there to let my docs know what to do. I also walk for my little grandson. This is something I can do today — advocate for his future — so he never loses his wife, or his second grandmother — ME — to breast cancer. THAT is why I am here.”

Was I effective? Well, I didn’t get them to cry. But I did find out that on both sides of the isle there is broad support for research funding and breast cancer issues, and each of the four aides I met with had their own breast cancer story. Their Mom. Their aunt. Their partner. I feel encouraged about their votes.

After our meetings we delivered a dozen information packets to the House and Senate offices who had no constituents attend the summit. It dawned on me that we would have been so much more powerful had we had summit attendees from EVERY nook and cranny in the US — if EVERY house representative got a visit and every state senator heard our story. But some states had no one. Even my state, California, only had 13 of us from the entire state, yet we have 53 house representatives. We missed most of them!

That is where you come in, Mr. and Ms. 3-Day Walker! Consider coming next year. You are invited. Especially if you are from some podunk, off the beaten track location with a lonely representative who doesn’t get many visitors! They want to hear from you. From US. One thing I kept hearing is how much more impactful a volunteer constituent’s voice is over a paid lobbyist. They value us. They listen. Komen almost doubled the size of the Summit this year, to 250. Their goal is to double again for next year — to 500. We 3-Dayers can do it. And think about it. We have spent tons of time advocating for Komen each time we ask for a donation. We are experienced! We know how to make the ask!!!

I will be there next year. And I will come more prepared. I plan to gather stories from my team, and from my own experiences — stories that support the asks that Komen will decide upon. I hope you are there with me. You won’t regret it.