Patients get a voice at DoD Breast Cancer Research Program
I am a "consumer reviewer" for the Department of Defense's Breast Cancer Research Program (BCRP), which means once a year I review a number of grants together with scientists, oncologists, pathologists, surgeons, etc. My specialty? Living with breast cancer and being connected to people living with breast cancer. My role is to evaluate the impact of grants. How impactful can a study be? How reasonable are the expectations of patients in that study? How does it affect people's quality of live? Patients want more than just to prolonged lives. We want to live well.
Here's the testimony I wrote for the DoD BCRP website:
My story with breast cancer can be seen as tragic. But instead, I want people to see it as hopeful and inspiring. I was diagnosed with breast cancer in 2013 while pregnant. To my surprise, chemotherapy during the pregnancy is the standard of care. I delivered a healthy baby boy with a head full of hair while I had no hair at all. After he was born, I underwent tests that couldn’t be done while I was pregnant, and we discovered the cancer had already spread to my brain, liver, and bones. After trying different drugs and finding the right one for me, the cancer started to respond to the therapy. There were (and still are) many setbacks: Most drugs don’t penetrate the brain, many drugs harm the heart, the side effects can be debilitating, and my illness has taken a huge emotional toll on me and my loved ones. But I’m still a dynamic, smart, loving 35-year-old woman. And at every moment since my diagnosis, I was still LIVING. Cancer is part of my life, but it doesn’t define me.
My new reality of living with this disease has opened my eyes to the inequities in breast cancer. Did you know that the share of the money obtained in pink campaigns that goes to research on metastatic breast cancer is negligible compared to the amounts allocated elsewhere? Or that breast cancer mortality is 40 percent higher for African American women? Metastatic breast cancer is the only breast cancer that kills, and research is the only effort that truly helps patients do what we want to do – LIVE! That is not pink!
That’s why I applied to be a consumer reviewer with the Department of Defense Breast Cancer Research Program. This program has played an important funding role for some of the most meaningful breast cancer discoveries in history. And I have got to be part of that and have a say about what should be coming next. It was one of the most rewarding experiences in my advocacy career. Following the review, one researcher wrote to me, “Regardless of whether we meet again, I want you to know I have been moved by your profound fighting spirit, and it is making me redouble my efforts within my research.” My goal is to make an impact while I am here in the lives of others dealing with this disease. And I have started to do just that.