According to the nonprofit organization breastcancer.org, about 1 in 8 women will develop breast cancer over the course of her lifetime. This year, around 276,480 new cases of breast cancer will be diagnosed, and 42,170 women will die from it. Though white women and women of color get breast cancer at about the same rate, it’s often detected later for the latter, with 40% more breast cancer death among women of color.
For Maimah Karmo, these numbers aren’t merely statistics. As founder and president of the Northern Virginia-based Tigerlily Foundation, Karmo leads the charge nationally on combating the disparities of age, stage and color in breast cancer. Her foundation educates, empowers, supports and advocates for young women aged 15 to 45 before, during and after breast cancer. She’s also a survivor herself.
We talked with Karmo to learn more about the obstacles in equal breast cancer care for all women, what the Tigerlily Foundation is doing to fight these disparities, and how her own experience impacts her mission. Below are highlights from our conversation.
What are some of the disparities in breast cancer care for women of color?
Black women face unique stressors including economic challenges, lack of health information, poor patient/provider communication, fearful perceptions of treatment and distrust of the health care system. Black women are 40% more likely to die from breast cancer than white women, and are more likely to get triple-negative breast cancer, which is often aggressive and recurs after treatment. Due to a legacy of exploitation of people of color in the clinical trial, scientific and research settings, African American women have a mistrust of the scientific and health care system and providers; they also have a lower enrollment in clinical trials, which makes it more difficult to design treatments for this population. Black younger women have more barriers to care including financial, geographical, literacy, socioeconomic and historical trauma. Finally, the best cancer centers and doctors are not located where the people facing disparities are.
How is the pandemic impacting both breast cancer and fundraising for awareness this year?
We are doing everything we can at Tigerlily Foundation to provide education and tools of empowerment for patients. Through our “Funds for Families”, we have been able to help women who are struggling to get to their screening and treatment programs and support their family. Our Pure Care Initiative, which we launched at the end of March when COVID-19 hit our country, provides 12 virtual classes to keep you on track with a healthy, fit lifestyle. Our Disparities Alliance is an MBC ANGEL cohort to train black women living in the cities with the highest death rates from breast cancer to host “Know More Disparities” and “Pull up a Seat” bi-directional conversations with health care providers and patients, engaging patients as equal partners. The #InclusionPledge provides a tangible framework to ensure that every system that affects the lifestyle and lifespan of Black women is held accountable to change in ways to end barriers.
What are some of the needs of younger breast cancer patients and survivors versus older ones?
An estimated 12,150 cases of breast cancer are in women under 40, and 26,393 are women under 45. Every year more than 1,000 women under age 40 die from breast cancer, and nearly 80% of young women diagnosed with breast cancer find the abnormality themselves. It is our responsibility to provide education, resources, access and empowerment for young women to be their own best advocate about their health. When you are diagnosed with this disease, you really feel alone; we do everything in our power to change that narrative for young women.
What inspires and motivates you, and how does your own experience influence the work you are doing?
I believe that service is the rent we pay for living. And because I’m alive, it’s my responsibility to ensure that others have the right to live.
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