An African immigrant’s journey through breast cancer is transforming the healthcare landscape.

October 25, 2021 | 5 minute read
Margaret Lindquist
Writer and content strategist
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At the age of 31, Maimah Karmo felt a lump in her breast. A breast surgeon told her that it was probably nothing, that the recommended screening age was 40 or later, and to come back in six months if it was still there. But that advice didn’t sit well with Karmo, who had immigrated from Liberia as a teenager and had worked her way up to a successful career working as a proposal manager. She was persistent, and finally received a mammogram and biopsy. The news was bad. She had invasive, stage II, triple negative breast cancer.

Maimah Karmo, Tigerlily foundationThe painful treatments, stress about her job and medical bills, and her worries about parenting her young daughter all began to add up. One night, at her lowest, she asked God to give her a message. She woke up the next morning determined to keep fighting, and to fight for other women in the same situation. “I thought, how can I do something that's going to make a difference in people's lives?,” says Karmo. “Even if just one person hears my story, one mom talks to her daughter about breast cancer early, or one doctor doesn't dismiss her patient.”

Out of that experience came the Tigerlily Foundation, a non-profit organization that fights for equity and justice in breast cancer treatment, and works directly with cancer patients, particularly women of color, to provide comfort and a sense of community.

Troubling statistics

One in eight women in the US will develop breast cancer in their lifetime. One in 38 will die from it. Although Black women and white women are diagnosed with breast cancer at about the same rates, Black women are 40% more likely to die from it, according to the Center for Disease Control and Prevention. Rates of the most aggressive forms of the disease—triple negative cancer and metastatic breast cancer, are also higher in Black women.

It’s the political side of Tigerlily that is working to change those prognoses. Karmo worked with Congresswomen Deborah Wasserman Schultz on the EARLY Act, which funds breast cancer awareness, education, and grant programs for young women. Karmo also works with pharmaceutical companies to build trust in clinical trials and ensure inclusivity. One of Karmo’s flagship programs works to force multiply and increase representation of Black women through its ANGEL Advocacy Program, which educates Black women who live in the 20 cities with the highest mortality rates to eliminate barriers and build bridges in healthcare.

TigerLily Foundation“Tigerlily is teaching pharmaceutical companies and clinical investigators that different communities absorb and understand information in different ways,” says Katherine Vandebelt, Oracle’s global head of clinical innovation. “You have to tap into the forums and community-based activities that are trusted.” For example, some people may be easier to reach through workplace programs, others through church- or health club-based programs.

Karmo has a few pieces of advice for young women, regardless of whether they’re dealing with a serious health diagnosis.

  • Develop a good relationship with your primary care physician. “My mother told me that it was important that my doctor should know me and I should know her and it shouldn't be in that once a year type of thing,” says Karmo. Because of the relationship Karmo had built with her doctor, she wasn’t dismissed by her OB-GYN when she came to her with concerns about the lump she’d discovered and her doctor advocated for her at a time when women rarely received mammograms if they were under 45.
  • Be persistent. After receiving a false negative on her mammogram, Karmo’s oncologist dismissed her concerns. But Karmo knew that something was wrong. “I had to persist until I got a biopsy,” says Karmo. “I scheduled it and the day after the biopsy, the doctor called me and said, ‘You have breast cancer.’” Over the course of her treatment Karmo gave herself a “master class” in navigating the healthcare system around cancer and she began to dream of a world where healthcare professionals talked to patients differently, talked to them about clinical trials when they're diagnosed, made sure that patients knew what their options were and how to overcome barriers. “I wanted to make sure that we were educating patients but also educating doctors. Healthcare providers need to remember why they got into healthcare.”
  • Practice self-care. “You need to know how to honor yourself, when to say that this hurts, something feels wrong, and I need help,” says Karmo. Cancer patients need more than medical treatment to make it through the grueling experience. In many cases, especially in underserved communities, patients need support with childcare, transportation, and financial burdens. And even in communities that are not underserved, biases still exist that must be addressed. The Tigerlily Foundation is working on public policy initiatives to help fill those gaps. Another aspect to self-care is knowing when it’s time to change doctors. “There are times when you have say to your doctor, ‘You’re not treating me right,’” says Karmo. “And then you can choose to train them, or hire, or fire, but you need a healthcare team that will love and care for you, and fight for you.”

#InclusionPledge for Black Women

One of the most significant actions that Karmo has taken recently is the introduction of the Inclusion Pledge. More than 12,000 people from more than 100 companies have signed on, including Oracle, Pfizer, Merck, Eli Lilly, Amgen, Seattle Genetics, Sanofi, Daiichi Sankyo, healthcare organizations and other stakeholders in the healthcare community. Anyone can sign the pledge, a transparent framework that identifies and tracks equity actions, holding organizations accountable to taking specific, measurable actions that will result in dismantling systemic barriers, and co-creating solutions that will result in health equity for Black women and ending disparities in our lifetime.. “People think I'm fearless,” says Karmo. “I'm not. I just move into what scares me because if I don't move into the illusion of what scares me, I can't eradicate it.”

Margaret Lindquist

Writer and content strategist

Margaret Lindquist is a senior director and writer at Oracle.

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