Little did Ellen Duffy know when she joined Beyond Pink TEAM, because her mother was a breast cancer survivor, that she would be diagnosed with the same disease a few years later. Ellen was diagnosed with breast cancer and before she completed her initial treatment, it was discovered the breast cancer had spread to her bones. With metastatic breast cancer, Ellen was unable to work at either of her two jobs: as a nurse for Covenant Hospital or as an assistant at a fitness center. After one year both of her employers let her go which left her with no job and no health insurance. While she applied for Social Security disability, she still had to wait more than 2 years to become eligible for Medicare [health care] and did not live long enough to receive it. Ellen was single, never married, and lived her final year extremely sick and in constant fear of losing her home because she could not pay her bills.
A diagnosis of metastatic breast cancer can be very frightening because it is considered incurable. Metastatic breast cancer occurs when breast cancer cells travel from the breast to another part of the body such as the bones, liver, lungs, or brain. Metastatic breast cancer is also referred to as Stage IV breast cancer. We still do not understand why some cancers become metastatic, especially those that are diagnosed years after the first breast cancer. In the past, doctors believed that cancer progressed in a linear manner and that women with positive lymph nodes were more likely to become metastatic. Now researchers are focusing more on genetics and the microbiology of breast cancer. They are trying to learn why some cancers behave more aggressively, what causes cancer cells to grow in different parts of the body, and what treatments can be developed to stop that process. About 6% of women are initially diagnosed at Stage IV. They may already have symptoms such as pain or shortness of breath that cause the doctors to suspect metastatic cancer. Or the metastasis may be discovered during a CT or PET scan as part of the initial workup for breast cancer. Most women who become metastatic are diagnosed later, anytime from several months to years after they were initially treated for early stage cancer.
SHARE NYC:  https://www.sharecancersupport.org/metastatic-breast-cancer/aboutmetastatic-cancer/
The Metastatic Breast Cancer Access to Care Act (S. 1374/H.R. 2178)
The above law would improve the lives of people, like BPT’s Ellen Duffy, living with metastatic breast cancer. We need your help in lending your voice to this nationwide effort. Currently, individuals under age 65 with metastatic breast cancer who qualify for Social Security Disability Insurance (SSDI) benefits must wait 5 months before receiving SSDI benefits and after that an additional 24 MONTHS (2 YEARS) before being eligible for Medicare (health insurance).
**Currently the National Breast Cancer Coalition (NBCC) is asking Congress to enact a bill, S.1374/H.R. 2178, so individuals with metastatic breast cancer have access to the care for which they are entitled and deserve. One of NBCC’s most important priorities is passage of our bipartisan Metastatic Breast Cancer Access to Care Act to eliminate waiting periods for social security disability insurance benefits (SSDI) and Medicare coverage for eligible individuals with metastatic breast cancer.
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Concrete Things You Can Do
It’s now easier than ever to take action through the National Breast Cancer Coalition Advocacy Action Center: https://www.stopbreastcancer.org/action-center/action-network Success depends on the voices of breast cancer survivors, and other advocates and stakeholders across all 50 states. Time is running out for legislative action in this Congress. We need you to act today to urge your members of Congress to cosponsor this legislation and get a vote as soon as possible. An additional way you can help is to Vote Breast Cancer!
**Individuals diagnosed with metastatic breast cancer automatically qualify for disability benefits from the Social Security Administration (SSA) if they apply and meet the SSA’s technical qualification rules.
To earn Social Security Disability Insurance (SSDI) benefits, the individual

1. must have been employed within the last ten years, and
2. currently be unable to work due to their disability.

Once an individual is approved for SSDI, there is a five-month waiting period to begin receiving benefits. Following approval of SSDI, individuals with metastatic breast cancer are eligible for Medicare coverage based on their disability, regardless of their age. However, there is a 24-month waiting period for Medicare coverage (health insurance) once eligible. Based on the limited life expectancy of individuals with metastatic breast cancer, an average of 3 years, Beyond Pink TEAM (BPT) and the National Breast Cancer Coalition (NBCC) believe both the 5-month and 24- month waiting periods should be waived. By law, the 24-month waiting period for Medicare is waived for individuals with ALS (Lou Gehrig’s disease) and End Stage Renal Disease (ESRD). Legislation has been introduced which would allow patients with ALS who qualify for SSDI to immediately be eligible for SSDI (thus waiving the five-month waiting period). NBCC believes both SSDI and Medicare coverage should also apply to metastatic breast cancer patients who qualify.
 
Local Women Struggling
“L” - “I’m 38 years old, a wife, and a mother of 4 young children, 6 and under, living my life with stage 4 metastatic breast cancer.”
“My name is Danielle and I have stage 4 breast cancer with Mets (metastasis) to my bones and my brain. I’m 38 years old and a mom of 3 children, ages 8,6,and 3. There have been many challenges during this journey, but the most important thing is my kids and trying to keep their lives as normal as possible for as long as possible.”

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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