Earlier this month, Amgen participated in The Atlantic’s People v Cancer virtual event, where Christophe Bourdon, senior vice president and general manager of Amgen’s US Oncology Business, introduced Maimah Karmo, founder and CEO of the Tigerlily Foundation, for a discussion titled Battling Cancer in the Time of COVID.
Karmo is a 14-year survivor of breast cancer. She also created the Tigerlily Foundation to help other young women living with breast cancer, with a focus on Black women who are facing racial disparities in healthcare — disparities that have only grown deeper and wider during the COVID-19 pandemic.1,2 Her passion for helping others was influenced by her experiences growing up in war-torn Liberia, where she often accompanied her mother, a nurse, as she cared for patients. Under her leadership, the Tigerlily Foundation has launched the #InclusionPledge for Black Women, which Amgen supports.
We sat down with Karmo to learn more about how her experience coming to the U.S. as a refugee shaped her view of the healthcare system, the many ways that COVID-19 has exacerbated existing health disparities, and why she encourages everyone who works in healthcare to take the #InclusionPledge for Black Women.
What did you learn about advocating for your own health through your experience growing up in Liberia, and from your mother as a nurse?
I lived through multiple wars growing up, and it was common to see people who were sick or injured in the streets begging for money because they couldn’t get healthcare. My mom was a nurse, and I would often go with her throughout the hospital, as she took care of anyone who needed help. She also taught me the importance of self-breast exams when I was 13 years old, and that lesson probably saved my life. I found a lump when I was 31 and I had to self-advocate for six months to get the test that led to my breast cancer diagnosis because I had doctors telling me I was too young and not to worry about it.
How did your own breast cancer experience inspire you to take on racial disparities in health and cancer care?
Coming as a refugee from Africa, I had this impression of America as a melting pot where the colors all blend, and everyone is equal. I assumed that was the case with healthcare as well, but it wasn’t until I was diagnosed with breast cancer that I really began to experience the healthcare system and see firsthand the inequities that women of color experience. I was educated and had enough experience around doctors and nurses to and insist that I got the care I needed to survive, but that’s often not the case for Black women who are of lower income, have geographic, literacy, trust or psychological barriers, or financial barriers, which back them into the corner of choosing between seeing the doctor and taking care of their family. Now I’m committed to eliminating these barriers faced by young Black women because they're the ones facing the highest disparities.3
In what ways has COVID-19 exacerbated those disparities?
Anyone who faced barriers before COVID-19 is facing even greater barriers now due to COVID-19.1,2 Something as simple as public health guidelines to wear masks and use hand sanitizer can create barriers because they represent added costs that many people can’t afford. The shift to telemedicine is another way COVID-19 is creating barriers because people who don’t have Internet access or a smartphone don’t have equal access. There are also barriers caused by reduced access to public transportation, layoffs and lost income, children doing remote schooling, and the enhanced inability to have support in the home, as well as safety issues around COVID-19, all of which make it harder to actually get to their doctors for treatments or checkups.
You’ve said that the patient experiences of Black women are often overlooked, even in conversations about racial disparities among people in the healthcare industry. How can the medical community do a better job of engaging diverse voices?
Around 2010, I was one of the people who worked with Debbie Wasserman Shultz on the Breast Cancer EARLY Act to help young women with breast cancer. I would frequently find myself in the room with other members of the Advisory Committee of Breast Cancer in Young Women, surrounded by doctors and leaders in public health, who would talk about healthcare access and inequality while also dismissing my comments or talking around me. They assumed that the titles before or after their names, terminology, statistics and years of experience gave them more importance than a Black patient advocate. Often the people we consider to be experts talk and think at such a high level that they don’t see the problems that people on the ground are facing. I want to ensure that people like these realize that titles, time and terminology may inhibit their ability to see and understand why the experiences of Black women are different, and why these differences create barriers that cause us to die at higher rates.
What is the #InclusionPledge, and how can taking it serve as a starting point for addressing these disparities?
The Tigerlily Foundation #InclusionPledge is a call to action for anyone whose work impacts the health or lives of Black women. To end health disparities, we must see change in those people and systems that show inherent disregard for life, which cannot go unaddressed. Change must occur by holding accountable those who, either by action or inaction, contribute to the loss of life for people of color.
The #InclusionPledge provides a transparent and tangible framework across stakeholder sectors, which will identify and track equity actions, holding all involved accountable. This will result in measurable and improved equity and outcomes for Black women. The pledge holds people and organizations accountable to looking within, and to examine how biases may exclude the experience of others.
It’s also a commitment to take steps to learn about and incorporate Black women’s experiences as patients and partners. For example, if you have clinical trials going on and you can’t find Black participants, partner with advocacy leaders and organizations, like Tigerlily Foundation, to find Black patients, co-create solutions, or to examine clinical trial criteria to make sure it’s not exclusionary.
In order to make change, we must put patients first, we must listen and we must understand our own implicit or explicit biases, and how they impact the systems that were built to exclude others, which lead to loss of life. The Tigerlily Foundation #InclusionPledge is a framework and a call to action for specific, tangible and measurable change, and that is engaging grassroots to global organizations – with a mission to end disparities in our lifetime.
- Yaya S, et al. BMJ Glob Health. 2020; 5(6): e002913.
- National Cancer Institute. Cancer Disparities. Available at https://www.cancer.gov/about-cancer/understanding/disparities. Accessed October 28, 2020.
- Williams D. Am J Public Health. 2002 April; 92(4): 588–597.