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 DC 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 address them? And I'm still unclear if DC is actually a state! Yeah... a political Bozo - first class.
How did this happen? I am a breast cancer survivor - 14 years. 5 years ago I set a bold goal of raising $100K for Susan G Komen. The Komen Foundation is my super hero for the men and women in the breast cancer community, and those who have not yet received their invitation to join it by way of a diagnosis. Did you know Komen is the largest contributor in the WORLD to breast cancer issues next to the US government? They are. Their Bold Goal is to cut death from breast cancer in half by 2025, and to eventually end all dying from this disease.
To reach my own bold goal of $100K, I started a team - Hands Up For Hooters (gotta make it fun to get results I discovered) - walking and fundraising for Komen in their 3-Day Event. We trained and raised funds to be able to walk 20 miles a day for 3 days in a row November 2015 in San Diego. I overhsot my goal by a bit, and in our first year raised $148,000. In the ensuing 4 years, we have raised over $660,000 for the Komen Foundation. Yeah, I am stoked by that.
I am not sure why I was invited to the Komen Breast Cancer Advocacy Summit last week, 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.
Thursday our group of 250 (survivors, affiliates from many US cities, women living with metastatic breast cancer, Researchers, Doctors and other cancer advocates) marched to Capitol Hill. All of us from California (13 of us) met with Senator Diane Feinstein and Senator Kamala Harris's office. Then 2 of us met with my House Representative - Ami Bera - and her representative - Tom McClintock. Prearranged meetings were scheduled with their Health L.A.s (Legislative Aides) for 15 minutes each.
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 importantce to all of us and our families.
2. To 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. To co-sponsor a new Komen originated bill called ABCD - Advanced Breast Cancer Diagnosis - aiming to equalize the out-of-pocket cost of mammograms and diagnostics test. The average patient cost of a mammogram is $231. The average patient cost of an MRI used to further diagnose a suspect mammogram is over $1,000. How many women will forego the advanced diagnosis because they can't afford it? This bill will lessen the out-of-pocket costs.
4. We asked them to Co-Sponsor the Drug Parity Bill. Think about this. You have breast cancer. You need chemo. You go to the clinic for your IV infusion with a $25 copay - it is an office visit and that is what they cost. But let's say there is a newer, better drug for you that comes in pill form. Wow. Easy peasy. No babysitters. No doctors or technicians involved. No travel. You just pop the pill a home. That, 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 $3500 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.
So we asked that they support adjusting this medical benefits structure to treat pill and IV drugs with the same co-pay.
I crammed my head with factoids in preparation for these meetings, yet still felt wholey inadequate to speak to these issues. Then a bit of divine intervention arrived in the form of what else? My UBER DRIVER! "What are you in DC 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 Soduko 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 DC 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, 3 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 looses 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 NIH funding, and breast cancer issues, and each of the 4 aides I met with had their own breast cancer story. Their Mom. Their aunt. Their partner. I feel encouraged about their votes.
I'll be more prepared next year, now that I understand how this works. I will have my story down pat. And my goal will be to make they cry.