Four Questions with Maimah Karmo: Ensuring Better Representation for Women Affected by Breast Cancer

Stories@Gilead - December 08, 2020

Maimah Karmo believes she’s alive today because she had the courage to advocate for herself and her health. Now, the breast cancer survivor and founder of Tigerlily Foundation provides education, awareness, advocacy and support to other women affected by the disease. The organization has been a longtime partner of Immunomedics and is now a Gilead partner following the recently completed acquisition.

“We are trying to drive actionable change in terms of ensuring better representation and solutions of issues facing young women and women of color in the healthcare community,” says Maimah.

As the breast cancer community comes together for the virtual San Antonio Breast Cancer Symposium (SABCS), we connected with Maimah to talk about Tigerlily Foundation’s work and what the organization plans to share as the headliner of the symposium. 

Q: Why did you find it essential to start Tigerlily Foundation?
Tigerlily Foundation was born from a need to address and break down the disparities and racial biases that exist when it comes to diagnosing and treating breast cancer in women of color, especially Black women.

I experienced these barriers in healthcare when I found a lump in my breast. I saw a surgeon who dismissed me because I was a young person and a person of color. I was told that I was fine and didn’t need further testing, and an option was to come back when I was 40. I had to push relentlessly for six months to get a biopsy. At 32 years old, I ended up being diagnosed with triple negative breast cancer, a very aggressive form of breast cancer. If I hadn’t advocated for myself, I believe that I would not be with you today.

Q: What are the main focuses of the organization’s advocacy work?
Through our programs, we seek to educate, advocate for and empower women of all backgrounds, including people with a heightened risk for breast cancer, people facing health disparities and those with less access to healthcare.

Our programming fits into different categories, which align with our mission to support young women before, during and after breast cancer. It’s important for us to focus on providing newly diagnosed women with resources and education to help them through their journey. We also work to empower women to be new, stronger versions of themselves by the time treatment ends, and we provide survivors with peer-to-peer support, psycho-social support and financial assistance, if needed. Our vision is to end disparities of age, stage of breast cancer and color.

Q: Tell us about Tigerlily Foundation’s plans at the San Antonio Breast Cancer Symposium (SABCS).
We are collaborating with the American Association of Cancer Research (AACR) to open the SABCS, which is a big deal. It’s the first time the conference is headlining with a Black, female, first-generation and patient-led organization, and a discussion on health equity. I’ll be co-hosting a conversation focused on healthcare equity and partnerships. We’ll dive into socio-economic access issues, personalized solutions for underserved populations and policy changes to end disparities in healthcare.

You can’t create science without the people who will be receiving the treatments and whose very existence will be impacted by them. Having Black partners and working directly with scientists to collaborate is critical to innovation, diversity of thought and approach to creating meaningful, measurable and accountable change.

Q: What are the next strategic solutions for breaking barriers in the healthcare system?
Young women and women of color need to be part of the solution to better healthcare access, and our advocacy work is a key element of trying to make this happen. For example, we know that Black women have lower enrollment in clinical trials, which makes it more difficult to design treatments for this population. I myself exemplify this – in the 14 years since my diagnosis, I’ve not once been asked to participate in a breast cancer clinical trial. We have to change this.

The challenge has been that if you don’t “fit” in the healthcare system, you don’t get equal support, a tailored solution or access – as a patient, community or an organization of color. This has to stop. We must examine biases, have tough conversations, break down these barriers and create solutions. I want to see equitable healthcare treatment for everyone in my lifetime. It is possible.