Maimah Karmo was barely in her thirties when she found a lump in her breast. Her doctor dismissed her as too young and too healthy to have breast cancer. But Karmo knew her body—and she persisted until she was given a biopsy that revealed TNBC.
Black women know they need to advocate for themselves when it comes to many issues, especially health, Karmo says, and that it's often the difference between life and death.
That's why the foundation she leads has joined with other breast cancer charities and Merck & Co. to develop a web docuseries spotlighting the challenges of triple-negative breast cancer, an aggressive form of the disease that disproportionally affects younger Black women.
“If I had not pushed for that biopsy, I would not be talking to you today,” said Karmo, founder and CEO of The Tigerlily Foundation.
Merck’s Keytruda is currently the only immuno-oncology drug approved for TNBC after Roche’s Tecentriq lost the indication in late August. The disease is also commonly treated with chemotherapy, and other drugs—such as AstraZeneca's PARP inhibitor, Lynparza—are used in women with certain genetic mutations, the American Cancer Society says.
In July, Merck said using Keytruda both before and after tumor-removal surgery reduced the risk of disease worsening, cancer returning or death by 37% in patients with early-stage, nonmetastatic TNBC.
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The web series, called "Uncovering TNBC," sees Yvonne Orji, an Emmy-nominated Nigerian-American best known for her role HBO’s “Insecure,” profile and chat with three women living with TNBC. The daughter of a nurse, Orji has a master’s degree in public health and she experienced her own breast cancer health scare years ago.
In three episodes on the Uncovering TNBC campaign's website, patients Sharon, Tiah and Damesha share their resilience in the face of the disease and discuss the health disparities they face as Black women and how their experiences inspired them to advocate for other women.
“The ultimate goal is to increase education, awareness and action around triple-negative breast cancer, to help people know that what's available for treatments," Karmo said, and "that we have to keep investing more time and research dollars in this disease to have multiple interventions for populations of color that are most affected.”
The project aims to arm women, especially Black women, with the tools and confidence to challenge doctors who tell them there’s nothing wrong. And it's designed to help them know where to look for help and information about TNBC when they need it. This subset of breast cancer affects non-Hispanic Black women twice as much as non-Hispanic white women, and Black women diagnosed with TNBC are more likely to die.
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“We are working to address these barriers through community-level listening, creative storytelling that represents the diversity of TNBC patient experiences and new educational materials," said Cristal Downing, Merck’s chief communications and public affairs officer. "It is our hope that we can drive awareness, open dialogue, and action among women, their loved ones, healthcare professionals and the broader TNBC community through the 'Uncovering TNBC' campaign.”
Merck and the avocacy groups are promoting the campaign on social media, as is Orji.
Merck is not the only pharma working to fight against health disparities in breast cancer. Eli Lilly partnered with U.S. Olympian and American high jump record-holder Chaunté Lowe and Susan G. Komen in a new multi-year collaboration to fight health inequality in breast cancer.
These disparities have always been around, so why now? In addition to October being breast cancer awareness month, most agree that the past two years of COVID-19 and the witnessing of George Floyd’s murder has brought more understanding from outside the community to the issues that Black and brown people face—especially when it comes to healthcare.