Era of Hope 2011 Consumer Vignette

Title: A Consumer’s Perspective

Investigator: Valeria Spinner-Banks, Wisconsin Breast Cancer Coalition

I’m a breast cancer survivor. I’m a 21-year breast cancer survivor the first time and 18 years the second time. And I’ve been an advocate; I’ve helped start a Breast Cancer Support Group for women of color in Milwaukee. I’m very interested in—in understanding why so many women of color are dying of this disease. I just lost a friend in January and I have been walking with another woman for the last 2 years, who is doing quite well. So it’s really important for me to network, to find out what other women of color are doing around the country and just to be involved and to—to figure out what we can do to get better treatment so that we can get a handle on this disease.

In 2000 I got involved with the DoD Breast Cancer Research Program. I was a little hesitant and a little afraid because you know you’re with all these scientists and doctors and I mean these—these people have been PhDs, you know so reading those proposals especially if you’re not familiar with the field, such as the first one I did had something to do with chemistry and I was like—chemistry? What do I know about chemistry? But the main question for me is—how will this help a person who has breast cancer?

When I read something that excites me, I feel that I can possibly change minds, make a difference. I am a person who is very aggressive so if there is something I really feel that I—I really want to hone in on, I will really press. And they—they respect that.

And last year when I read I had a—there was a proposal that I felt should have been looked at and they had taken it off. And I made them bring it back. And I had a discussion with them to the point that I really was in tears because I really thought that it was something that would really work. It was a passion for me. It was really a passion for me and that was the first time I had really been passionate about a research proposal that I had read.

I would really like to see the BCRP to focus more on minorities and breast cancer and what’s happening with them. Because so many women of color are dying from this disease with the triple negative, there has got to be a way that we can—that the scientists and the researchers, we can all work together to figure out why is this happening more to women of color than to any other women.

My message to the scientists—we’re ready to hold your feet to the fire. If after 5 years it’s not working start over; try something new because we cannot waste time on something that’s not going to work or something that has been done already. We need to start looking for more innovative ways to defeat this disease.