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

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2018 Komen Advocacy Summit

Washington D.C.

Wednesday, March 21, 2018

Day One of the Summit

Expecting cherry blossoms and spring in D.C., I was dismayed when Nor’easter Toby was predicted to dump 10 to 12 inches of snow on DC on Tuesday and Wednesday of Summit week. My alarm went off at 5:00 am Wednesday and I anxiously looked at my phone for flight updates – it was scheduled ON TIME! I can’t describe how excited I was that I was going to get to DC in time for the Advocacy Summit activities that afternoon.

While most participants worked for a Komen Affiliate or Komen HQ, my nametag read “Komen 3-Day Champion”. I was a bit startled, but decided I could live with being a champion for our 3-Day fight!

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Watching others enter the registration area, there were lots of squeals and hugs. I felt a little like the in-law who hasn’t met the extended family yet. Thankfully the Komen family is an easy family to find your place. The meeting started promptly with a welcome and a launch into the current relevant political landscape on the Hill. Our task became clear – we were going to focus on three key issues and have a specific request for legislators on each issue:

  1. For Fiscal Years 2018 and 2019 (FY18 and FY19), increase the appropriation for the National Breast and Cervical Early Detection Program to the authorized $275 million amount. This program is in place to assist low income, uninsured and underinsured women in accessing breast and cervical cancer screening. It is a state-federal partnership and was established in 1990. This program is a complement to Komen’s screening and diagnostic grants and is critical to make sure all women can receive the early detection they deserve.
  2. For FY18 and FY19, increase NIH funding for biomedical research by $2 billion per year. The National Cancer Institute (NCI) is housed within the National Institutes of Health (NIH). While recent years have seen increased funding for NIH, it is still behind biomedical inflation and much more money is needed to continue to keep up with current domestic and international research for cancer.
  3. For House Members, become a cosponsor of H.R.1409, the Cancer Drug Coverage Parity Act and for Senators, be aware of this House Bill and ready to vote yes when it hopefully makes it to the Senate. This bill would simply make insurers in every state and territory to treat oral medications for cancer covered under pharmacy benefits at the same benefit level as IV medications covered under medical benefits. This is already a state law in 43 states, including Texas, but is not a federal law.

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The meeting then covered the importance of having our voices heard on the Hill! This was particularly helpful because they explained how little time we might have with a legislator and that we may just meet with their staff and it may be in an office, or a hallway, or the waiting room as space is limited. Knowing this made it clear that it was not a personal insult, but rather they wanted to hear from as many constituents as possible so they fit people where they could find space!

After dinner we were all excited to hear Paula Schneider, Komen’s new CEO, talk to us about her life, her cancer journey and why she is so passionate to take the lead with Komen. During her personal and moving talk, she had us all hold up a hand if we were survivors, co-survivors or knew someone with breast cancer. You can imagine the entire room had their hands in the air!

Paula also spoke of the hidden costs of breast cancer; she reiterated that women of color in the U.S. are 40% more likely to die of their breast cancer than white women, and that more research focus must go toward metastatic disease (both parts of Komen’s Bold Goal of reducing death from breast cancer 50% in the U.S. by 2026).

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Next to the stage came the one and only, Nancy Brinker! As you can imagine, we all felt as if we were in the presence of a rock star! She was as passionate, beautiful, gracious and well-spoken as you would expect. She took us back to the beginning when the word “breast” could not be spoken in public to where we are today. She reviewed her promise to her sister Suzy and the growth of the Susan G. Komen organization and the new international focus she has taken. Nancy quoted Marie Curie, “I never see what has been done, I only see what needs to be done” as her inspiration for moving forward to focus on disparities in breast health and all the programs she is involved in around the world.

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Thursday, March 22, 2018

Day 2 and Hill Day

I woke up early, excited and a bit nervous about the day and the task ahead. It was exciting to learn at breakfast that the House had passed their version of the FY18 budget late the night before! The good news was our first ask to increase funding for the NBCCEDP had received a $9 million increase for FY18, bringing it to $197 million. Now we had to adjust our ask to a thank you for the increase this year but please keep it going for FY19 and get to the $275 million goal. The BIG news was about the NIH funding! Rather than the $2 billion increase for NIH we had hoped for, the House had passed a $3 billion dollar increase for NIH! So, a HUGE thank you for FY18 was added to our ask, along with a request to keep the increase going for FY19. It is safe to say that as a group we were a big bunch of happy campers that morning!

Because the first visit of the day was to a Senator, the entire sharply dressed group from Texas was assigned this meeting. Ready for battle, we were greeted by Senator Cornyn’s staffer in charge of health issues and he ushered our large group into a side hallway as we were overflowing the Senator’s office. Knowing we would not be granted much time, we quickly introduced ourselves and launched into Komen’s Bold Goal and discussed the three issues and “asks.” The survivors of the group (including me) all contributed personal narratives to the legislative issues. We took a great Texan group photo with the staffer in front of Senator Cornyn’s office. This large meeting was a profound beginning to our time on the Hill.

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After this meeting, we split up to start the small group meetings – we had a lot of House offices to cover that day! I was lucky to be partnered with Eliza May, the VP of Mission Services and Community Outreach from the Komen Austin Affiliate. This was her sixth time to advocate at the national level, and had previously worked in both state and federal government in several capacities prior to coming to Komen. I’d say I hit the jackpot! Eliza and I had four more scheduled meetings and another nine representatives who were not officially scheduled but we wanted to at least go by and drop off an information packet.

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Eliza and I felt like we made the perfect team. It is unusual to meet someone and work seamlessly from the beginning, but we did! Not only did we do some serious discussing of the issues with our legislator’s staff, we even got an impromptu meeting with a staff member of Representative Henry Cuellar because Eliza grew up a block away from Representative Cuellar and asked his staff to leave him a note.

We walked over 14,000 steps (Fitbit certified) while on the Hill and made a total of 14 visits to legislators’ offices. Along the way we had some fun and cracked each other up; half from exhaustion and jubilation, and half simply because we had some funny adventures! To say we were proud would be an understatement, and to say we were exhausted would also be an understatement!

Despite our exhaustion, Eliza and I made use of the Senate Gallery passes we had been given by Senator Cornyn’s office. It was quite impressive, although there were many, many empty chairs given the impending government shut down. Somehow, they did still manage to get the $1.3 trillion budget in front of the President by Thursday where he signed it into law!

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After a brief stop at the Komen reception we joined Ginny Kirklin, Houston Affiliate advocate, for some tapas. I hate to admit it, but we ate enough tapas for a family of 8! We concluded that it was also well earned and no guilt was allowed! A solid night’s sleep followed.

Friday March 23, 2018

Day Three and Final Day of the Summit

After sleeping the dreamless sleep of the righteous (ok, maybe the dreamless sleep of the overfull stomach), I woke up with an Advocacy Hangover (stole this term from someone else but it was very fitting). We began with a breakfast where we all compared notes and stories from the previous day. It seemed that everyone had a hugely successful day on the Hill.

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Our final program was about the state of Medicaid in the states. A panel representing government, insurance and medical economic research discussed Medicaid and Medicaid expansion considering the ACA, and States’ right to waivers. Without going into details, it was a wonderful presentation that educated us all and confirmed that Medicaid and Medicaid waivers are a very complex issue between states and the federal government. Some interesting statistics about Medicaid that I didn’t realize:

  • 1 in 5 Americans is covered by Medicaid
  • 25% of the state budget in most states goes toward Medicaid
  • 50% of all births in the U.S. are covered by Medicaid
  • Medicaid is the single largest provider of long-term care in the U.S.

The take-home message from this panel is this – states are trying to improve their health care system while being good stewards of taxpayer money in a crazy political system.

Our final speaker was Vicki Sumner *, a 44-year-old, 8-year Met thriver who spoke of her difficult journey with metastatic breast cancer. The median survival rate after a metastatic diagnosis is 24 to 36 months. She has far surpassed those months but she now faces her 12-year-old daughter who is asking the hard questions. She wants to be able to give her better answers. She made a strong appeal for new chemotherapies, targeted therapies and immunotherapies. Increased funding for metastatic disease is CRITICAL if we are to achieve the Bold Goal.

As she concluded, there was not a dry eye in the room. THIS is the reason we were in Washington D.C. and why we must all continue to walk, to bring new walkers to the 3-Day, to raise money and awareness and we must all be advocates with our legislators. They can make a substantial difference and we need their collaboration. We can be heard but only when we raise our voices as one.

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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. 

Black History Month Highlight: Margie W., Atlanta 3-Day Walker

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Meet “Miss Pink” – Margie W., who represents the 3-Day all year long; not just in her pink wardrobe, but in her sparkling enthusiasm. She has participated in fourteen 3-Day events since 2005, raised more than $32,000 (not including all the donations she has made to teammates over the years), and promotes the 3-Day spirit in every step of her life, not just those she takes on her yearly 60-mile journey.

Margie told us her story, her goal, and why it’s so important for the African American community to participate in the 3-Day. As we celebrate Black History Month, we also celebrate Margie and her vital message.

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Because she lost her favorite cousin to breast cancer, and because her sister is now a more than twenty-year survivor of the disease, Margie encourages everyone she knows to be on the lookout for early signs of breast cancer, to get their mammograms, and work to make every difference that they can.

“As an African American woman, it is so important to me to walk.”

And walk she does! When the 3-Day came to Atlanta in 2005, Margie says she was “over the rainbow” about making that sixty-mile journey. She has walked in other breast cancer walks, and has walked the 3-Day in other cities, but she keeps coming back to the 3-Day.

“When I started, I told myself I was only going to walk three years and I was going to be out of there. But I became addicted! I keep telling my donors it’s going to be my last year, but then every year, I call them again and say, “I lied. I’m walking again!”

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At almost 67 years old, she has been walking through knee pain for the last few years, but is going through treatment to try and walk this year if she can. But no matter what, she will crew. And she’s already begun fundraising!

“I already have $600 in my book. I am always raising money! That way, I can be there no matter what!”

For people who need help hitting their fundraising goals, Margie has plenty of ideas, but her #1 tip is simple: Just ask.

“ASK. ASK. ASK. I keep donation letters at work, in my car, in my purse. Anytime someone tells me I look pretty in my pink, I ask them! I’m always ready. I take whatever they give me. I could be in line at the grocery store, and if someone says something about all my pink, I tell them about the 3-Day.

I also used the 3-Day app last year. I sent out no letters, but I used the app and I was amazed! My thing is, you cannot just sign up, and throw fundraising on the back burner. You have not because you ask not. Ask!”

Her team, Tutu’s for Tatas, has also used fashion shows and a “Breast Cancer Mustang” event to help raise money. They were one of the first teams in 3-Day history to hit the million-dollar mark, and that’s thanks to dedicated fundraisers like Margie.

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She always donates to her teammates and fellow walkers who are struggling to meet their goals, and accepts any donation, no matter how small. That includes donations that are less than a dollar!

“The smallest donation I ever had was 37 cents. I was on a 12-mile training walk, and I stopped to use the bathroom. A little girl named Megan stopped and talked to me, and I told her I was walking for breast cancer. And she gave me thirty-seven cents, so I wrote a check for that thirty-seven cents and sent it in.”

To her, every cent, and every step makes a difference. Because she knows that all that work goes to helping people in need.

“It’s about seeing the symptoms, getting your mammograms. [..] There is a lot of help here! There are so many charities and help. That’s why people like me walk so hard and work and fundraise!”

She says that, “by the grace of god, I’m not a survivor, but I am a supporter” and she wants to support Komen’s Bold Goal as long as she can.

So, if you see her in Atlanta this year, give Miss Pink a big hug, and thank her for all her hard work.

 

 

 

 

 

 

 

 

Atlanta 3-Day – 2016 Route Update!

Last year on the 3-Day® blog, we shared some detailed “Insider’s Peek at the Route” posts with you. We pulled the curtain back on the overall process of planning and executing a 60-mile route, and then got even more in-depth with each individual 3-Day walk’s route.

This year, we don’t need to dive quite so deep, since most of what we shared last year still applies. But we definitely wanted to keep you looped-in with the updates and changes that have been made to the 3-Day routes for 2016. We’re also bringing in members of the 3-Day Advisory Council to share their thoughts about the 2016 changes. These participants stand as the “voice” of the 3-Day community and their input has been instrumental in strengthening the communication and camaraderie between Komen and the 3-Day family, so we’re thrilled to have their insight here on our route updates.

We’ve previously shared route updates for Michigan, Twin Cities and Seattle, and today, Atlanta is front and center!

Need a refresher about what the Atlanta 3-Day route was like last year? Read our 2015 “Insider’s Peek” post here.

New for 2016 – Meredith, the Event Planning Manager for the Atlanta 3-Day told me that the 2016 event doesn’t have too many major differences from last year. Day 1 starts in Stone Mountain again, and should look pretty familiar except for a few changes on the last two miles before camp. On Saturday morning, the first half of Day 2’s route will be a reverse of Day 2 from last year; in other words, the morning route out of camp up to lunch will be the same route that brought walkers from lunch to camp on Day 2 last year (of course, there will be other pit stops in between). Meanwhile, the entire second half of Day 2’s route this year, from lunch back to camp, is brand new. With regard to Sunday’s course, Meredith shared, “You’ll also see some changes on Day 3: Atlanta Pride is happening the same weekend as the Atlanta 3-Day, so on Sunday, we’ll have to go around Piedmont Park, rather than through it as we have in the past. You’ll also see a few changes to middle miles of Day’s 3 route.” The Closing Ceremony will be at Turner Field again. Meredith pointed out a couple of highlights that walkers can look forward to in Atlanta this year: “Get your cameras ready for a photo op on the Jackson St. bridge, made famous by The Walking Dead. And Atlanta’s new Beltline Trail will play a starring role in our Day 2 and Day 3 routes this year.” She also added, “And yes, Atlanta never disappoints in the hills department and some of the city sidewalks are a little rough around the edges, but hopefully our Atlanta walkers have been preparing for that!”

In Their Words – Here’s what Charles, Beth and Sylvia, three of our 3-Day Advisory Council members, had to say about the 2016 Atlanta updates:

Charles (5-year Atlanta 3-Day crew member) – The Atlanta 3-Day will mark Charles’s sixth year as a crew member and his fifth year as the captain of the Traffic Control crew team. Since he hasn’t walked in the 3-Day before and spends most of his crew time in camp, Charles didn’t have much feedback about the changes to this year’s Atlanta route. But he did say, “I think the route is good! My wife (this is her 6th year as a walker) is disappointed about not going through Piedmont Park, but she is looking forward to the Belt Line trails.” Charles and his wife Renee participate in the 3-Day in honor of Renee’s mother, who is a breast cancer survivor.

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Charlie, on right

Beth (2x Atlanta walker) – Beth, a breast cancer survivor herself, is excited to be returning to the Atlanta 3-Day after completing her first walk last year in Atlanta. Beth shared, “I am going to miss walking through Piedmont Park, but think the Beltline will be a great addition.” One other thing Beth enjoys about walking in Atlanta in October is the excitement of fall and the upcoming holidays. “I love walking through the areas that always have their homes decorated for Halloween.”

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Sylvia (11-year 3-Day walker) – Sylvia, who lives in Florida, will be walking in Atlanta this year for the second time. “I love the parks, and the beautiful trees and old homes. I love Stone Mountain, and the wildness of it.” Asked what she thinks about the route updates, she said, “The changes are truly going to help. I can’t wait to see the new routes, as I went to college here and it is a trip back in time for me.” Having such a long history with the 3-Day, Sylvia had some other thoughts to share “It is truly the journey that brings you to the awareness of why each of us are here. We have our own personal reasons for wanting to travel this path…but each of us, in our hearts, shares a passion for doing something, somehow, to make a difference, to change a life…to find a cure. Each of us, as we walk these miles, travel not only the journey of the road, but also the journey of our hearts. Each of us become one of a family that is united across all boundaries, to do what we can to truly make a difference, and we know that each step does make a difference.” Beautifully said, Sylvia.

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Keep an eye on the 3-Day blog in the coming weeks when we’ll continue sharing updates about the remaining 2016 3-Day routes.