“Where you live shouldn’t determine whether you live” – A Letter to Sen. Murkowski from the CEO of Triage Cancer
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, ...
Open Letter to Congress: I Am Alive Because of the ACA (Guest Post)
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 ...
Kirby Lewis: My NCCS CPAT Symposium and Hill Day Experience
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 ...
NCCS CPAT Member Jen Campisano’s Powerful Op-Ed Highlights Senate’s Secretive Health Care Repeal Process
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 ...
Mommy, Where’s Your Hair? (And Other Questions I Faced as a Parent with Cancer)
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 ...
Ask Your Oncologist About Clinical Drug Trials
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 ...
Research Priorities for the Growing Population of Childhood Cancer Survivors
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 ...
Guest Post: Mesothelioma Awareness and the Danger of Asbestos Exposure
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 ...
Highlights from the 2016 CPAT Symposium and Hill Day
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 ...
Guest Post: For the Love of a Friend
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 ...
