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. 

April Fundraising Challenge: Raise Funds to Benefit the Susan G. Komen Treatment Assistance Program

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Throughout the rest of April, we will be running a fundraising challenge to support the Komen Treatment Assistance Program. All dollars raised through the 3-Day from today through the end of the month will provide financial assistance, education and support services to low-income, underinsured or uninsured people undergoing breast cancer treatment as part of the Komen Treatment Assistance Program.

So, we’re challenging YOU to boost your fundraising efforts and help us reach our goal of $500,000 for the Komen Treatment Assistance Program so that we can help more women and men facing breast cancer. Please share the great work we can do through this program with as many donors as possible, and encourage them to help our cause.

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Not only will you be reaching your 3-Day fundraising goals, you will be continuing to help people in need.

You already know using tools like email and social media help you earn donations — now, here are a few suggestions on how to fundraise even more. They are simple and effective steps that will make a big difference!

  1. Share as often as possible on all your social media platforms, and be sure to include a link to your fundraising page.
  2. Email your network a minimum of twice, especially remembering to email them in the final days of the challenge so they don’t forget.
  3. As people donate, tag them and thank them on social media, like this: “[Insert Name] just donated on my behalf to the Susan G. Komen Treatment Assistance Program, which helps eligible breast cancer patients who have limited financial resources get the treatment they need. She is providing support to those who need it most. Won’t you join her and donate to the 3-Day today? [link to your personal page].”

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If you need help crafting your posts, here are some ideas for Facebook:

Example #1

From April 16 – 30, all the funds I raise for the Susan G. Komen 3-Day will go directly to Komen’s Treatment Assistance Program, which helps eligible breast cancer patients who have limited financial resources get the treatment they need. I’ve challenged myself to raise $500 this week to contribute to an overall goal of $500,000 for the Treatment Assistance Program. Can you help us reach this goal? Donate now!

Example #2

Today I’ve challenged myself to get 10 donations for @The3Day, to help fund Komen’s Treatment Assistance Program as part of a goal to raise $500,000. So far, I have 3 donations (thank you [tag] [Insert Name], [Insert Name], and [Insert Name]!); can you help me get 7 more before the end of the day? Make your donation now! Or if you’ve already donated, please share this request!

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Or, you can use one of these ideas for Twitter:

Example #1:

Today’s Challenge: 10 donations to fund Komen’s Treatment Assistance Program! Donate today: [personal page web address] #The3Day

Example #2:

Support me with a donation: [personal page web address]. All funds raised April 16-30 benefit Komen’s Treatment Assistance Program #The3Day

Example #3:

Donations now through 4/30 to @The3Day benefits @SusanGKomen and their lifesaving Treatment Assistance Program. Support my 60-mile journey: [personal page web address] #The3Day

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We are so excited for this first-ever fundraising challenge and look forward to the possibility of expanding this across multiple 3-Day funded programs in the future!

Good luck and get ready to fundraise! As always, if you need any fundraising support or advice, reach out to our 3-Day Social Media team or your local coaches. We are always here to help!

Sidewalks to Science: Getting to know Dr. Carmen Bergom, M.D., Ph.D. at Medical College of Wisconsin

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Dedicating her life to finding a cure for breast cancer, Dr. Carmen Bergom is driven to help Komen meet our Bold Goal of reducing the current number of breast cancer deaths by 50% by 2026. As a radiation oncology physician, she works closely with patients and patient advocates that inspire her to improve breast cancer outcomes through research and clinical care.

In this month’s Sidewalks to Science blog, we will get to know Dr. Bergom a little better.

When I’m not in the lab I…

  • Love to spend time with my husband and three wonderful daughters, ages 5 to 13
  • Enjoy spending time on the lake with my family
  • Love to ski

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What I do… study the tumor cell microenvironment to potentially enhance treatment options

My team studies the environment around the breast cancer tumor cell that influences growth, spread and treatment response. Better understanding these environmental factors could lead to improved targeted treatment options for patients.

Breast cancer is… personal to me, my friends and family

I have a family history of the disease and have witnessed too many loved ones be directly impacted by breast cancer. These experiences led me to become a radiation oncology physician scientist, specifically treating breast cancer patients as well as leading a breast cancer research lab.

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Working with patients… has helped shape my current research program

In my interactions with patients, I would see people who had the same stage, tumor markers and other predictive features, and then have vastly different outcomes from treatments. That’s what made me focus my work on recognizing these non-tumor differentiators, and this research that could lead to more personalized and effective treatments.

People with breast cancer should… ask for help when they need it

Friends, family, support groups and organizations like Komen are always there to help breast cancer patients in need. Using resources to assist with cancer-related challenges may reduce stress and anxiety in some patients, helping to ease an already challenging time.

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Komen is… helping the community

I have a special affinity for organizations like Komen that battle breast cancer on all fronts — advocacy, research, and community — all improving patient outcomes. In addition to participating in the Race for the Cure and local Affiliate fundraisers, I have also had the privilege of giving laboratory tours to patient advocates, helping them see our research at work.

“Like everyone touched by breast cancer, I believe improved outcomes for breast cancer patients cannot be achieved soon enough!”