by Christine Carpenter

During and following my treatment for breast cancer I became aware of what really mattered and I discovered an intriguing combination of fragility and inner strength. I was fragile because I realized what I had lost and feared the obstacles that lay ahead. My strength came from determining to do everything possible to make the most out of whatever time I had left. I also started to consider how many women were going through the same thing I was going through and thought of all the women who will go through this - but don't even know it yet. And I thought about my own daughter, and realized that I must channel my fear, anger, and new-found strength into doing what really mattered: ending deaths from this disease.

I joined Beyond Pink TEAM and the National Breast Cancer Coalition (NBCC). Because NBCC is smart, bold, evidence-based, passionate, and systems-oriented in their mission to end breast cancer, they ignited the breast cancer conversations I wanted to have!

Knowing very little about advocacy, influencing Congress, passing legislation, or creating grassroots networks, I began attending NBCC’s annual Leadership Summits and Lobby Day, which take place in Washington, DC in early May.

It wasn’t long before NBCC asked Beyond Pink TEAM to do something that really mattered and helped save the lives of many diagnosed with breast cancer. In 1998, 7 members of Beyond Pink TEAM, met with Iowa U.S. Senator Chuck Grassley in his local office, and we asked him to provide leadership to help pass the Breast and Cervical Cancer Treatment Act. Senator Grassley said “yes” and became its champion. It was signed into law in January 2001. Individuals are now Medicaid eligible to receive treatment for breast and cervical cancer even when they don’t qualify for a standard Medicaid program, thanks to the efforts of the Beyond Pink TEAM, the National Breast Cancer Coalition, and advocates across the U.S. So Beyond Pink TEAM advocates have made a huge difference in access to care.
Over time, Beyond Pink TEAM members have continued to develop relationships with the members of the Iowa Congressional delegation, and we are proud that most of them have a 100% voting record on National Breast Cancer Coalition priorities.

Why is Advocacy so Important?
You ask why is Advocacy important? It is important because breast cancer is a political issue. Policy makers determine almost every aspect of breast cancer, such as funding for breast cancer research, access to quality care, and regulations affecting health care systems. That is why advocacy is so important to ending breast cancer.

My take is that the optimal approach to ending the breast cancer epidemic is problem-solving research. But just throwing money at the current system is taking too long. Much research is based on what will get published or funded, not about solving big overarching problems. So a large-scale impact requires us, patients/caregivers/those touched by breast cancer to be Advocates, because our only agenda is to end breast cancer. At NBCC it is not about “my” breast cancer. It is about ending breast cancer for all. As Advocates we have no conflict of interest. The newest drug, the latest early detection device, a particular lab are not my bread and butter. Advocates provide an outside perspective. At NBCC the Advocates’ role is to:
⬧ Challenge: by asking the hard questions
⬧ Question: everything
⬧ Collaborate: on meaningful issues
⬧ Explain: the advocate perspective
⬧ Report: to our constituencies; and
⬧ Oversight: to call it “like it is”

So I hope you will join me. You can start small by joining the Beyond Pink TEAM and the National Breast Cancer Coalition. Start reading Beyond Pink TEAM and NBCC newsletters, explore our websites, and join the Iowa Breast Cancer Deadline 2020 Advocacy Network Facebook Group so, from the comfort of your own home, you can email and/or call Iowa’s Senators Grassley and Ernst and Iowa’s Representatives Finkenauer, Loebsack, Axne, and King. Then, if you want to do more, join the Beyond Pink TEAM Advocates currently working to influence the next president of the United States.

NBCC has made informing and influencing the presidential candidates on breast cancer policy a high priority in every presidential campaign since inception. That effort continues for the 2020 election. Beyond Pink TEAM advocates are speaking with the Presidential Candidates as they come to the area. We ask them to show their support for ending breast cancer by signing the NBCC Policy Platform that addresses three important issues:
* Research: The federal government must:-
Appropriate sufficient funds annually to support meaningful breast cancer research and develop policies that guarantee transparency, oversight and accountability.
Appropriate $150 million for FY 2020 and again in 2021 for the DOD peer-reviewed Breast Cancer Research Program.
* Access: Health care is a basic human right. The federal government must guarantee that all individuals have access to patient centered, evidence based, high quality and affordable health care.
* Influence: The federal government must ensure that trained and educated advocates have a seat at all tables where breast cancer research, health care and policy decisions are made and implemented.
I recognize that everyone reading this leads busy lives, with what I am sure is an already jam-packed schedule of work, family, church or volunteering commitments—let alone trying to squeeze in a little time for yourself! The thought of one more commitment—or one more meeting—might seem intimidating. Yet your health, and the health of all of our daughters and granddaughters, is at risk. We must do what we can with the time that we have to End. This. Disease.
I challenge you to take a bigger role in this movement: take action. Little or big, everyone can take action.
⬧ Join the Iowa Breast Cancer Deadline 2020 Action Network Facebook Group and the National Breast Cancer Coalition’s National Action Network.
⬧ Send an email, post on social media or make a call when an advocacy alert is issued.
⬧ Schedule a meeting with our senators or Representatives.
⬧ Gather your friends to attend an NBCC Leadership Summit in Washington, D.C.

Now is the time to become an advocate to end breast cancer.
I began telling you about my breast cancer diagnosis, my fear, my anger, and my need as a mom to end this disease. That was 26 years ago, and I am thrilled I’ve lived to see our daughter graduate from high school and go on to become a physical therapist, marry, and have two of the cutest grandchildren.
My grandchildren provide me with even more motivation. I want to end this disease so my grandchildren can grow up with a dad AND their mother because every child deserves a mother. Will you join me?

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In 1991, the National Breast Cancer Coalition (NBCC) was formed with one mission – an end to breast cancer. NBCC has accomplished much over its twenty plus years – bringing about unprecedented research funding to the worldwide scientific community, forging new collaborations to design research and set priorities, expanding access to information and care to underserved women and launching unparalleled training programs to prepare advocates around the globe to work side by side with scientists, policy makers and health care providers. Yet breast cancer continues to take lives.

To renew the sense of urgency to its mission and to refocus global efforts on ending breast cancer and saving lives, the NBCC has set a deadline – End breast cancer by January 1, 2020,

Breast Cancer Deadline 2020®.
NBCC has a strategic plan of action to achieve the deadline. The plan focuses on primary prevention, stopping women from getting breast cancer and understanding and preventing metastasis (the spread of cancer), which is responsible for 90% of breast cancer deaths. This means by January 1, 2020, we must understand how to prevent people from getting breast cancer in the first place and how to prevent them from dying from the disease.

RESEARCH – Facilitate collaboration in all areas and minimize unnecessary competition.

First Pilot Artemis Project® 
The topic chosen was a 5-year development plan for a breast cancer preventive vaccine, because of the potential impact on breast cancer and the progress made in the field of immunology. A research plan is in place, teams have been identified and the plan is being implemented. This vaccine project will serve as a model for other catalytic projects.

Future catalytic projects - Plans include the role of viruses in the initiation, development or spread of breast cancer; the role of inflammation in breast cancer; targeting the immune system to prevent breast cancer development  or metastasis; the role of lifestyle and other external exposures in initiation and progression of breast cancer; and identifying the windows when women are most vulnerable to breast cancer development and metastasis.

Refine existing research infrastructure – form a collaboration to identify problems that impede progress within the research infrastructure and design solutions to move the existing systems to focus on making progress toward the Breast Cancer Deadline 2020®.

CHANGING THE CONVERSATION – Focus on research to prevent breast cancer. Breast Cancer Awareness Month has come and gone. Press coverage included articles about local runs, survivor stories and reminders to get mammograms, but there was a noticeable focus on research to end breast cancer. Congresswoman Shelly Capito delivered a speech from the floor of the House of Representatives imploring her colleagues to support the Accelerating the End of Breast Cancer Act.

Locally, Beyond Pink TEAM advocates talked about Breast Cancer Deadline 2020® on radio. And in social media, #BCD2020 is a trending topic on Twitter.

To learn more about Breast Cancer Deadline 2020®, the Artemis Project, or the National Breast Cancer Coalition check out; breastcancerdeadline2020.org

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