​by Christine Carpenter and Lori Seawel

Did you know Iowa has played an integral role in breast cancer research that is saving lives right here in the Cedar Valley? Some of our own Beyond Pink TEAM members credit the Breast Cancer Research Program as the reason why they are alive today. And they have retired Iowa Senator Tom Harkin to thank.

Fran Visco, President of the National Breast Cancer Coalition, explained in a 2014 interview with the Philadelphia Inquirer (October 18), “You know, there are many runs and races and dinners that raise money for breast cancer research - and they're all important. But real money, year in and out, comes from federal appropriations. So, we said that's what we're going to focus our efforts on. We were successful [winning some $300 million in their first congressional appropriation], but Sen. Tom Harkin, who was then the chair of the Appropriations Committee, said to me, ‘I can't do all of it in the domestic budget.’ So, we got $210 million in the defense budget.”

As a result, the Breast Cancer Research Program (BCRP) was created in 1992 as the first program under the umbrella of the Congressionally Directed Medical Research Programs (CDMRP). You may ask how breast cancer research is relevant to military health. The December 2020 BCRP Report explains, “Female active-duty Service members have a 20%-40% higher incidence rate of breast cancer than the public. The incidence rate of breast cancer for active-duty women is seven times higher than the average incidence rate of fifteen other cancer types across all Service members. The outcomes of BCRP-funded research will ultimately benefit military Service members, Veterans, military beneficiaries, and the general public.”

The BCRP, a unique partnership among the public, Congress, and the military, has become a model program. The CDMRP has grown to encompass more than thirty-five similar targeted programs. Funds for the CDMRP are added to the Department of Defense (DoD) budget each year. Support for the Breast Cancer Research Program is allocated from those funds via specific guidance from Congress. Foundational to the program is the involvement of breast cancer survivors, alongside scientists, to decide how the money gets spent.

​The BCRP has awarded $3 billion in grants since 1992 to highly innovative research. In fact, the breakthrough drug, Herceptin, was discovered through the Breast Cancer Research Program. Herceptin is used for the treatment of HER2+ early-stage and metastatic breast cancers.

Beyond Pink TEAM advocates Jill Hansen, Jacque Bakker, and Kristin Teig Torres attribute the BCRP’s initial research funding to develop Herceptin for saving their lives. Jill Hansen notes, “Herceptin was and still is a game changer [for me and] for so many women and men that has allowed us to survive and thrive past this horrible disease that continues to take the lives of our mothers, daughters, friends and other family members that we cherish.”

“In 2009 I [Jacque Bakker] was told by my oncologist that I had HER2+ breast cancer, a type of breast cancer with a deadly prognosis. Then I was told that I would be given a targeted therapy called Herceptin, a drug improving and prolonging the lives of men and women with HER2+ breast cancer. I remember feeling like I could breathe after hearing this.”

Kristin Teig Torres, a 10+ year survivor of HER2+ breast cancer, realized “breast cancer continues to take far too many lives. The large numbers are intolerable. Breast cancer is a political issue that remains an urgent health crisis. It will take action to prevent breast cancer and prevent death from breast cancer.”

All three are thankful for retired Senator Tom Harkin’s work to create the BCRP and have joined Beyond Pink TEAM and the National Breast Cancer Coalition to advocate to keep this program funded. All Beyond Pink TEAM advocates lead busy lives with already jam-packed schedules of work, family, church, and volunteering commitments. The thought of one more commitment – or one more meeting – is intimidating for us. Yet they realized their health, and the health of their daughters and granddaughters, is at risk. So, they do what they can with the time that they to End. This. Disease.

​Will you join them?


Citations for interview referenced in second paragraph and the BCRP report/program booklet referenced in the third paragraph:
The Interview: Fran Visco. (2014, October 18). Retrieved March 25, 2021:   https://www.inquirer.com/philly/news/20141019_The_Interview__Fran_Visco.html
Breast Cancer Research Program (Publication). (2020, December). Retrieved March 25, 2021, from Department of Defense – Congressionally Directed Medical Research Program.

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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