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‘Hear My Voice’ Goes to Washington

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Living Beyond Breast Cancer’s Hear My Voice Outreach Volunteer Program provides the tools and training to help people living with metastatic breast cancer make a difference in their physical and digital communities. Hear My Voice volunteer William “Kirby” Lewis, 57, from Inwood, West Virginia, was diagnosed with stage II breast cancer in 2012 and stage IV breast cancer in 2016.

From June 25-27 he was in Washington D.C. to learn about political advocacy and to talk to his elected representatives about keeping health care affordable and accessible for people like him. Here, he talks about his experience on Capitol Hill.

This article, with the headline Kirby Lewis: My NCCS CPAT Symposium and Hill Day Experience, was originally published by the National Coalition for Cancer Survivorship and is republished here with permission.

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Through my association with Living Beyond Breast Cancer, I was invited to attend a workshop Symposium with the National Coalition for Cancer Survivorship. The CPAT Symposium was held just steps away from Capitol Hill at the Washington Court Hotel. It was a great, incredibly informative, and intensive 2-day training session.

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Our members hailed from all over the country, with all types of cancer. In total, approximately 65 people prepared for our goal: to meet with our individual Congressional Representatives from our respective states with the purpose to STOP the proposed new health care bill, the Better Care Reconciliation Act (BCRA). The reasons varied for each participant, but the major issues voiced were the BCRA’s elimination or decreased coverage of Medicaid, compounded by the aspect that it would not adequately protect against pre-existing conditions—two factors that affect many of us with cancer.

While you might still be employed, or covered under your spouse’s insurance, things have a way of changing. In this day and age, companies are not as loyal to their employees as was the case years ago. What would happen if the company was bought out? Again, job stability is not what it used to be. So what happens if your spouse loses their job, and you have cancer or another pre-existing condition? Under this new bill, you may not be protected. It was a necessary step to approach Congress and plead with them on a case-by-case basis.

I met with three of our state’s elected officials’ staff. It was not what I would’ve preferred, as NOTHING beats a face-to-face meeting, but you take what you can get. All three, my Representative and our two Senators, all recognized the need and, according to their staffers, were willing to work to protect Medicaid and the health care for the best interests of our state.

I left the Capitol, tired, relieved, and once again feeling blessed that somehow something I said during these meetings might resonate and make a difference. It is good to do advocacy work…and it is great to be part of the process that makes America the best country in the world.

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Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer. To fulfill its mission of providing trusted information and a community of support to those impacted by the disease, Living Beyond Breast Cancer offers on-demand emotional, practical, and evidence-based content. For over 30 years, the organization has remained committed to creating a culture of acceptance — where sharing the diversity of the lived experience of breast cancer fosters self-advocacy and hope. For more information, learn more about our programs and services.