I was a conservation biologist when I received a metastatic breast cancer (MBC) diagnosis at the age of 34 in April 2015. I was fortunate enough to have a complete response to my treatments and with this "bonus" time, decided to leave my professional career to become a full-time patient advocate. Because of my science background, I was instantly drawn to research advocacy and attended my first breast cancer conference, the San Antonio Breast Cancer Symposium (SABCS), in 2017. I met several other patient advocates at SABCS who encouraged me to apply to various advocacy trainings as well as to become a consumer reviewer for the Breast Cancer Research Program (BCRP) at the Department of Defense (DOD). After becoming a graduate of the National Breast Cancer Coalition’s Project LEAD® Institute, the Alamo Breast Cancer Foundation’s advocacy training, and the Scientist↔Survivor program at the American Association for Cancer Research® annual meeting, I felt confident enough to serve as a consumer reviewer.
Although I had prepared extensively, I was still very nervous walking in to my first consumer reviewer meeting (pre-COVID days of course!). But I quicky realized how valuable my perspective was and how much influence I had as a patient to change minds. I distinctly recall discussing a grant for which I had given an outstanding review, but the scientists had not. After I explained how the cohort of patients this research could help was in desperate need of treatment options, they thoughtfully listened and changed their scores to reflect my input. I had researchers approaching me after the meeting to ask what I thought were research priorities for MBC – it was incredibly gratifying and helped me see the value patients bring to research.
My DOD experience inspired me to spearhead several initiatives that bring scientists and advocates together including GRASP - Guiding Researchers & Advocates to Scientific Partnerships, which will be featured as the official patient advocacy program at SABCS20. GRASP is a patient-led program that connects and empowers patients, clinicians and researchers to exchange ideas and learn from each other through scientific poster walkthroughs. Much like the BCRP, we feel that when patient advocates can inform and influence the research process, we will help drive more meaningful and fundable research that improves survival outcomes for breast cancer patients.
Another project inspired by my DOD experience is the MBC Alliance-sponsored Breast Cancer Brain Metastasis (BCBM) Initiative: Marina Kaplan Project which aims to address the unmet research needs of breast cancer patients living with central nervous system (CNS) metastasis. After losing two dear friends to BCBM, I wanted to bring together the key stakeholders - BCBM patients, scientific experts, and industry partners, to find solutions that will address the gaps in BCBM research. What started with just myself has grown to include 13 members - half of which are patients living with CNS metastases - and a multidisciplinary scientific advisory board with 17 of the world’s leading experts in CNS metastasis research. Together we have drafted guidelines for evaluating cancer drugs in breast cancer patients with CNS metastasis.
I continue to serve in an advisory role across multiple healthcare sectors and I am grateful to the DOD BCRP for showing me my value as a patient advocate. My advocacy work sustains me through the many losses I’ve experienced in the MBC community, and gives me hope that together we can advance more scientific breakthroughs and make faster progress to ending cancer.
Last updated Thursday, May 26, 2022