Health on the Hill: Komen Advocacy Summit Recap by Melissa Melson

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Day One

My Advocacy Summit experience was a whirlwind but it was completely worth it. After two cancelled and rebooked flights due to the upcoming storm, I finally got one at 6:00 AM from Detroit to D.C. I got there and went over the slides, facts and the current political climate while waiting to check in. The bright pink signs guided my way and I was greeted with warm smiles and a booklet to explain everything I would need to know. It was a big task we set out to accomplish. We were there to stand up and speak up for the cause and for so many with breast cancer.

We were grouped by states to allow us to meet others. And to my excitement, I was paired with people who had done this before and helped us newbies with what to expect and how to prepare. The meeting after registration got us up to speed on the relevant things happening on Capitol Hill regarding budget talks and the Oral Parity bill we would also be discussing.

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We discussed our three “asks” or main topics to discuss when attending our meetings on the Hill and it also helped us prepare for potential curveballs, too. We wanted policymakers to understand the asks, connect, and remember us and the important reasons we came.

Our first ask was an increase in funding to the NBCCEDP (National Breast and Cervical Cancer Early Detection Program). Our second ask was to the NIH (National Institutes of Health), which houses the National Cancer Institute, to increase funding for biomedical research. The third ask was to thank those who cosponsored HR1409, the Cancer Drug Coverage Parity Act, and to get the other House members to cosponsor if they hadn’t already. Of the 50 states, 43 have passed this on the state level. Michigan is not one of the 43, but it is one of the five that have it on the table this year. This made our visit very important. The Oral Parity bill instructs insurers to treat oral medications at the same level as IV medications to treat cancer. Pharmacy bills can be thousands of dollars without this coverage. I work with a therapist who has Metastatic Breast Cancer and takes an oral chemotherapy. She said it would be thousands every month and she would not be able be able to afford it if she hadn’t found financial assistance. Unfortunately, she knows many who are not as lucky in the state of Michigan.

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After a great dinner, we heard from Komen’s new CEO, Paula Schneider, about her own diagnosis, her family history and how all that passion and personal connection brought her to us. She reminded us of the disparity where women of color have a 40% less chance of survival, which is completely unacceptable. I work and live in a county with a high percentage of women of color. This matters to me and it was good to hear this reminder before I left to go to bed. The next speaker was Komen founder and ambassador, Nancy Brinker. Hearing from her made the end of this day even better. She reminded us of the promise she made her sister and showed us all the countries that Komen helps. She reminded us of how much we need to make positive changes in the world. We may be meeting within our own states but our impact could have positive global implications. I would say this was my most impactful moment of the whole weekend. It reminded me of how much work we still had to do and it showed me just how many lives we can help change with everything we do.

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Day Two

The day on the Hill was long, but amazing! We grabbed our breakfast and did some more prep for the day and hopped on the buses to the Hill. For Michigan, we split into two groups depending on the areas we service and tackled our busy schedule.

Our first stop was Representative Levin, who supports the Oral Parity bill. Our next stop was Representative David Trott. We found out that we had his support on all our asks and thanked him for already being a cosponsor of the Oral Parity bill. Next, we met with the staff member for Representative Brenda Lawrence, Annika, and we thanked her for her support and for cosponsoring, as well as her support of the Detroit Race for the Cure® in recent years.

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While waiting for our next meeting with the staff member for Representative Paul Mitchell, Rep. Mitchell himself coincidentally came out of a meeting nearby. We got to talk and hear his personal stories and connections to cancer. It was clear why we had his support for funding and why he cosponsored the Oral Parity bill. His nephew just passed at 35 of cancer that had metastasized. His wife benefited from advance screenings and her mother had breast cancer. He saw the reason for our asks and their importance in his own life.

We dropped off information for Representative Debbie Dingell (a longtime supporter of Komen and women’s health programs), and we took off for our two meetings with Senators. We joined the other half of the Michigan team for the meetings with Senators Gary Peters and Debbie Stabenow. We shared our asks and folders with information. We then asked that when the time comes that the Oral Parity bill comes to the Senate, to remember us, our stories, and the information we shared, and help it pass. It was an amazing end to the day with an opportunity that was unlike anything I could have ever imagined.

As a co-survivor, I often feel helpless. I can’t bring back the friend that died at 33. I cannot make sure my mom’s cancer doesn’t come back. I cannot take the Triple Negative Stage 3B cancer away from my 45-year-old stepmother, nor the cancer away from my friend who was just diagnosed at 34. The 3-Day walk, the Race for the Cure and this Advocacy Summit helped me feel like I was helping in my own ways.

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Day Three

We ended our three-day adventure recapping our day on the Hill, had discussions about the state of Medicaid and insurance issues and we got to hear from a few speakers, including former Colorado Legislator Dianne Primavera, who now leads Komen Colorado. She told us about the hard work she did for cancer bills, and helped us learn how to get our Representatives’ attention. She really wanted us to know that anyone can stand up for a cause. Doing our homework, having passion, and even a little food can help get you a chance to talk to our elected officials.

We ended the day hearing from a Metastatic Breast Cancer thriver, Vicki Summers*. She was diagnosed at 34, and at 38 she found out she had Metastatic Breast Cancer. The estimated survival rate is 24 to 36 months, but she has fought for 8 years. She sees the need for new treatments, immunotherapy advances, and more research. The things she did try have given her more time with her daughter, who was only three years old when she was diagnosed. She is now 12, and Vicki* wants to see her daughter grow up, she wants other women and men to see their families live and grow too. There was not a dry eye in the whole room. I don’t think it’s a real Komen event without a good cry. Her story reminded us of the personal side to the “asks” and put another face to my list of people I fight for. Her story reminded me of why we had all come together and how much further we need to go. I am so grateful for this opportunity to continue to fight for advances and improvements. To help not just those I know personally affected by breast cancer, but all women and men everywhere.

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*Our friend Vicki Sumner, who inspired us all last month in D.C. with her metastatic breast cancer journey and urgent call for more research funding, passed away this week. She was a devoted wife and mother, and a passionate advocate. Her passing is a tragic reminder of the importance of our work together.

Our thoughts and prayers are with her family. Vicki, along with all those we have lost to this terrible disease, remain the inspiration for our work.

An Update from Chrissy Mathews at Komen

Both at the Komen Impact Forums and here on the blog, I promised regular updates on the 3-Day program and our work at Komen. Here’s what’s new:

IMPACT FORUMS

We finished up our first ever Komen 3-Day Impact Forums in February. Over the course of four weeks we visited our seven 3-Day cities as well as three former cities (Washington, D.C., Tampa and Phoenix). The forums were hosted by me, other leaders within Komen and our local Affiliates when available. Overall, feedback was very positive. The consistent requests we heard from you across all cities were:

  • More time for Q&A with Komen
  • More information to help your fundraising efforts
  • Regular updates and stories on those served by Komen’s mission

As a result, some of the efforts you will see coming to your inbox over the next few months are:

  • More infographics—These will be focused on local fundraising impact and insights to aid your fundraising efforts. We want to give you hard data on what your donations can fund, for example: $2,300 can provide…, etc.
  • Komen’s annual report—Komen’s fiscal year ends March 31. We are currently finishing up our annual report which we will share with you along with a few quick takeaways to help you better understand where your dollars are going and what progress we have made.
  • Fundraising App—we have started developing a fundraising app for the 3-Day. This app will sync in real time with your 3-Day Participant Center making it easier to fundraise, recruit team members, send thank you notes, update your personal or team page, HALLELUJAH! You’ll be able to easily use your mobile phone to send emails, texts and more to boost your fundraising or build your team.
  • Regular mission updates and insights—We are working closely with our Mission team at the Komen national office to gather regular updates on mission projects (e.g., “the boob spa,” targeted therapies and metastatic research projects as we mentioned at the Impact Forums). These will also include personal commentary and stories from some of our researchers, grantees and staff. Our goal is to make this a monthly communication. More to come…

ADVISORY COUNCIL

Great news! We have formed our first ever Komen 3-Day Participant Advisory Council. The purpose of this group is to provide a collective “voice” of our 3-Day community to provide feedback and insights as we develop plans to enhance on-event experience, participant support, etc. An invitation to apply for the council was sent to everyone who attended an Impact Forum. From there, we reviewed all applications and chose 1–2 people from each 3-Day city. We purposely looked for participants with varying experiences with the 3-Day (walker, crew, new, veteran, big teams, individual participant, etc.) to ensure we had as many perspectives at the table as possible. This council will be hugely instrumental for us to ensure we are addressing your needs, prioritizing appropriately, making the right changes and communicating as effectively as possible for you. Council members will also be a great resource for you to share your insights and needs, knowing those will be brought to the strategy discussions each month.

So, without further ado, I’d like to introduce our 2016 Participant Advisory Council Members:

  • Anthony Anderson, Arizona 3-Day Crew, 10-year participantAnthonyA
  • Gary Bertolini, Michigan 3-Day Crew, Team Ropa Sucia, 8-year participantGary Bertolini
  • Maureen Budach, Twin Cities 3-Day Walker, Team Mickey’s Hope, 10+-year participant
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  • Kerry Calaiaro, Philadelphia 3-Day Walker, Team Best Bosom Buddies, 1-year participantKerry Calaiaro
  • Sylvia Campbell, Tampa Bay 3-Day Walker, Team 211, 10-year participantSylvia Campbell
  • Dottie Cornelius, Seattle 3-Day Walker, Team Island Girls, 7-year participantDottie Cornelius
  • Beth Heyer, Atlanta 3-Day Walker, Team Tits & Giggles, 1-year participant
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  • Melissa Loder, Dallas/Fort Worth 3-Day Walker/Crew, Team Independent, 10+-year participantMelissa Loder
  • Marianne Masterson, San Diego 3-Day Walker, Team STRIDE, 7-year participantMarianne Masterson
  • Charles McCollum, Atlanta 3-Day Crew, Team Badges for Boobies, 5-year participantCharles McCollum
  • Tina McDonough, Seattle 3-Day Walker, Team Valley Girls & Guys, 15-year participantTina McDonough
  • Beth Northman, Michigan 3-Day Walker, Team BC Babes, 10+-year participantBeth Northman
  • Rainy Reinbold, San Diego 3-Day Crew, 10+-year participantLaurie Reinbold
  • Thomas Riggs, Dallas/Fort Worth 3-Day Walker, Team Presbytittyans, 3-year participantThomas Riggs
  • Kim Williams, Twin Cities 3-Day Crew, Team Kindred Spirits, 8-year participantKim Williams
  • Carol Zimmer, Philadelphia 3-Day Walker, Team Girls Gone Walking, 9-year participantCarolZimmer

 

As an example of one the things the council will be involved in: Last week we had the opportunity to visit Seattle to reevaluate routes for this year’s walk. Tina and Dottie were kind enough to join us and share key insights and feedback for each section of the routes on Days 1, 2 and 3. Their insights from a participant perspective were exactly what we needed. We are all very excited about changes to come— we will keep you all informed!

2016 REGISTRATION RESULTS TO DATE

As you know, we launched with two targeted growth strategies for the 3-Day this year: our Reunion for former participants and the Bring Your Besties travel program for new walkers. Both provide a free plane ticket for eligible registrants, as long as the participants meet their $2,300 fundraising requirement.

  • Overall, we have slightly more participants registered than we did at this time last year. However, we are not done. We need to register another 3,000 people between now and May in order to improve on 2015.
    • The Bring your Besties travel offer closes on March 24, so please keep asking your friends and family to register. We want to introduce as many new walkers to the 3-Day as we can. So far, we are bringing more new walkers to the 3-Day than we have in more than three years, so let’s keep going!
  • We still have work to do. I encourage you to continue recruiting and building your teams. If you’ve recruited 1 person that’s AWESOME… now try to get 3-4 people. J My team is growing… Komen staff at the national office and affiliate offices are growing teams too!

At the Impact Forum (and here on the blog), I made the commitment to add a 3-Day city in 2017 if we significantly raise participation in all 3-Day cities. As we stand today, we still have a lot of work to do these next two months, bringing in even more walkers, if we want to add a city next year.

I will have another update for you in the upcoming weeks. Thank you for all you are doing. Together we are making great progress! Let’s keep it up!

Sincerely,

Chrissy