By: Maimah Karmo
Women of color with breast cancer tend to experience higher rates of death compared with Caucasian women who have the disease, and this in part due to women of color not having a meaningful presence in clinical trials or at major conferences where clinical data is presented, according to Maimah Karmo.
Karmo is a breast cancer survivor and founder and CEO of the Tigerlily Foundation, a national organization that provides education, awareness, advocacy and hands-on support to young women (ages 15-45) before, during and after breast cancer.
Through the Tigerlily Foundation, Karmo brought 20 women with breast cancer from 20 different cities to experience the 2019 San Antonio Breast Cancer Symposium (SABCS) in a way they never had before. This allowed the women to advocate for themselves and the underserved patients they represented by interacting with scientists who run clinical research studies and participating in panel discussions.
At SABCS, Karmo and the Tigerlily Foundation hosted their own panel that included women of color with breast cancer, young women with breast cancer and women with metastatic breast cancer who often face treatment disparities that are not properly vocalized. Karmo also sat down with CURE to discuss the importance of this panel and why it’s a must for marginalized patients with breast cancer to attend and be involved in major conferences such as SABCS.
Tigerlily realized the importance of engaging women who were facing disparities across the board — disparities of youth, of age. Women who are younger have more aggressive breast cancers and higher mortality rates. Women in the metastatic breast cancer space (are also) often overlooked, and women of color tend to have a 40% higher death rate than women who are Caucasian.
We felt we had an opportunity to really bring women of color to the table. They often feel like they’re overlooked. They don’t have a voice or a seat at the table, so, we built one for them here this week. We find that women of color are not engaging in clinical trials as much as they should be. If they’re not getting involved in trials, we can’t create treatments that target that demographic.
Some women that came to the conference never met a scientist before in real life. They hadn’t been aware of the power they had to be advocates, and so we looked at how to reach women who were underserved. We found that there are certain cities in this country that have women who are African American who have a higher diagnosis rate and death rate.
So, we were careful in selecting women who were underserved, because we want them to go back to their communities and educate them about the risk factors, the importance of engaging clinical trials and the importance of advocacy.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.