Tag Archive for: Guest Post

“Where you live shouldn’t determine whether you live” – A Letter to Sen. Murkowski from the CEO of Triage Cancer

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Dear Senator Lisa Murkowski, I am a cancer rights attorney who has spent the better part of two decades educating and helping people diagnosed with cancer navigate the health care system. While there are valid complaints about the increasing cost of the individual plans being sold in some state marketplaces, the ACA was game changing for the cancer community. It prohibited insurance companies from denying coverage or imposing exclusion […]

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Open Letter to Congress: I Am Alive Because of the ACA (Guest Post)

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By Rob DeLorenzo, Cancer Survivor – I am alive because of The Affordable Care Act (ACA). Having affordable and decent medical insurance allowed me to receive treatment for cancer which saved my life. But now you, our elected representatives in Congress, are voting to repeal the ACA and allow insurers to reinstate the pre-existing conditions exclusion, essentially voting for me and millions of others to lose […]

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Kirby Lewis: My NCCS CPAT Symposium and Hill Day Experience

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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. CPAT members hailed from all over the country, with all types of cancer. In total, approximately 65 people […]

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NCCS CPAT Member Jen Campisano’s Powerful Op-Ed Highlights Senate’s Secretive Health Care Repeal Process

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I have written before about being misdiagnosed with metastatic breast cancer, about the nearly five years I spent wondering whether I’d get to see my little boy grow up. Last year, my diagnosis was changed to early-stage breast cancer and an autoimmune disease that mimics cancer on scans. I appear to be in remission from both. I don’t know why I got a get-out-of-jail-free card. I’m not sure why I survived when so many of my friends will not. […]

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Mommy, Where’s Your Hair? (And Other Questions I Faced as a Parent with Cancer)

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It’s one thing to have cancer, and quite another to have children witness it. At age 37, I was diagnosed with Stage IV inflammatory breast cancer; I had a large tumor in my left breast, and the cancer had spread to lymph nodes and a rib. And I had a 14-month-old son and a 4-year-old daughter. Parenting with cancer is sadly not an uncommon phenomenon; […]

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Ask Your Oncologist About Clinical Drug Trials

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If you had asked me in December 2012 if I would ever participate in a clinical drug trial, my answer would have been a resounding, “No.” The very word “trial” scared me off; I didn’t want to be a guinea pig, a test subject. I wanted proven medicine.

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Research Priorities for the Growing Population of Childhood Cancer Survivors

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In the aftermath of this year’s historic Presidential election, one fact remains unchanged: cancer continues to be a devastating array of diseases that has touched or will touch the lives of virtually every American. As a 25-year survivor of childhood cancer, I want to insure that the health challenges faced by patients like me are emphasized as research priorities for the coming years are established.

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Guest Post: Mesothelioma Awareness and the Danger of Asbestos Exposure

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Ten years ago, I was just another woman, wife, and mom-to-be. I was anxiously and happily awaiting the birth of my daughter when I began experiencing symptoms that seemed over the top for pregnancy. Just 3 ½ months after she was born, I found out the truth—that cancer had been growing inside my body for decades, and I had no idea.

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Highlights from the 2016 CPAT Symposium and Hill Day

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In June, over 50 patient advocates gathered in Washington, D.C. to take part in the NCCS 2016 Cancer Policy & Advocacy Team (CPAT) Symposium and Hill Day. Days One and Two Attendees heard and participated in a number of informational presentations, including “Current Issues in Cancer Care: The Economics of the Cancer Care System,” “Communications […]

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Guest Post: For the Love of a Friend

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My dear friend Avery[1], a woman I’ve known since we were 10 years old (in 5th grade together) was diagnosed with inflammatory breast cancer (IBC) in 2006. Having observed my mother’s battle with breast cancer in the 1980s, I considered myself a veteran of the struggle. Times change. Diseases evolve. The intervening years—from the 80s […]

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