Consumer Involvement
Posted May 17, 2023
Jamil Rivers (Photo Provided)
Breast cancer is something that I have to think about every day, and this has catapulted me into advocacy. In 2012, my husband went through a colon cancer diagnosis, and then only 6 years later, I was diagnosed with metastatic breast cancer and metastatic de novo. It was very scary to know that while I felt absolutely fine, I had stage 4 metastatic disease. For me to live a long life, I know that research is needed to develop therapeutics that can extend my life. Progress has been made with other illnesses, allowing people to live longer, and I would love to see that same progress replicated in breast cancer. I want to be able to raise my children and be here for my family for as long as possible.
My passion for breast cancer advocacy led me to launch the Chrysalis Initiative in 2019, which is primarily focused on community advocacy and making sure that people of color and black women with breast cancer are receiving equitable care. My advocacy also includes several other roles, including serving as a policy advocate with Susan G. Komen, serving as the board president for Metavivor Research and Support, and serving on the board of Living Beyond Breast Cancer. Every lever of advocacy that I can pull, I want to make sure those are activated upon.
I first learned about the Department of Defense Breast Cancer Research Program (BCRP) going through the Living Beyond Breast Cancer young advocate program, and I was nominated to serve as a peer reviewer by Susan G. Komen. It is exciting to know that the BCRP wants to hear from those that are living with breast cancer, including our insight on proposed research projects. Involving patient advocates in the review process helps ensure that researchers consider the day-to-day needs, concerns, and challenges of people living with breast cancer. I am encouraged by the track record of therapies that have been developed with BCRP funding, and my participation in the process of reviewing proposed research makes me hopeful.
To the breast cancer community, I would like to say, “Get involved!” I never thought that I would be a person interested in reviewing research proposals, but I have found it to be fun and very meaningful. You never know how you could activate your advocacy, or the impact of that advocacy. I believe that personal experience from breast cancer patients truly influences research, and that the insight gained is impactful – which leads to better outcomes across the board.
The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of Defense position, policy, or decision.
Last updated Tuesday, May 16, 2023