On Being an Advocate

I’ve been meaning to write this post for a while, and somehow I have a hard time finding the words.  Perhaps it’s because I’m just beginning my journey as an advocate, learning what it means.  So I did what anyone in my position would do, I googled it.  Defining an advocate as one who supports or promotes the interests of another seems to make the most sense.  So specifically, I want to support the interests of breast cancer patients– I want them to understand their disease, their treatment options, and the ways their life will be different during and after their treatment.  But I also want to support the interest of breast cancer researchers.  Good research, after all, will ultimately be of benefit to the patients.

The best way that I can see to support patients is on an individual basis.  This blog has allowed me to reach out to newly diagnosed women, and I am glad to meet and chat with them one on one.  I try to reach out to friends of friends, and I’m hoping that in the future I can be a part of an organization that encourages this kind of mentoring on a more formal basis.  Supporting research is another animal entirely.  I am so grateful that I was able to become part of the Georgetown Lombardi Breast Cancer Patient Advocacy Committee.  It gives me a way to support research in a way that is completely natural to me.  Though I’ve only been to a few meetings, it seems that one of the bigger roles we play is to interact with researchers, helping them put the finishing touches on grant reviews.  Some funding mechanisms now include “consumers” (breast cancer survivors) on their review panels, and we help the researchers present their research in a way that will be easy to understand and attractive to those reviewers.  Having written a grant myself and participated in the grant writing process in my labs in graduate school, I realize that by the time we see the grants, the scientists are not likely to change their science. Our role is not to question their science, but to help them put their research into a bigger picture, to remember that their ultimate goal is not a great score by the review panel, but to make a difference for the breast cancer patient.  Sometimes, as a scientist, it can be hard to step away from the familiar, technical language.  I look forward to being able to help the scientists whose grants we review boil their science down, making it relevant and exciting to a breast cancer survivor who doesn’t eat, sleep, and breathe science.  I’m also looking forward to being able to serve as a consumer on a review panel, something I’ll hopefully have the opportunity to do within the next year or so.

I feel so fortunate to be part of this group at Georgetown, as I imagine it is one of the first of its kind.  It was started by a researcher there who had interacted with some advocates at a conference and felt they could lend an important perspective to the scientific process.  Most breast cancer advocates, however, do not review grants. They advocate for legislation.  In conjunction with large national organizations, they lobby their congresspeople for the funding necessary to give all these grants.  The National Breast Cancer Coalition has a very strong advocacy program, educating many of its advocates through a week long scientific crash course before sending them out on annual Lobby Days to speak to congresspeople or their staffers.  I am looking forward to meeting their Executive Director for Advocacy Training this fall when she speaks to our group at Georgetown.  Having figured out a little about what being an advocate looks like, I’m looking forward to figuring out what being an advocate looks like for me.