A frank discussion of health equity kicks off #SABCS20.
Maimah Karmo’s journey to sponsoring and presenting one of the opening Special Sessions at the 43rd annual San Antonio Breast Cancer Symposium started more than 14 years ago.
Karmo, a Black, first-generation immigrant, single mother, had to fight for six months to get a biopsy confirming malignant cancer in her breast at age 31.
“A breast surgeon told me the mammogram was negative, that I was too young to have breast cancer, and to come back in six months to a year or when I was 40,” Karmo said. “If I’d taken her advice, I would most likely be metastatic or dead today.”
Instead, Karmo, the founder and CEO of the Tigerlily Foundation, is cancer-free and fighting daily to ensure other Black and brown women aren’t dismissed by doctors and health care workers like she was.
“It was shocking to me that I got dismissed by a doctor who thought because she was a doctor and I was a young, Black woman that didn't know as much as she did, so she could make decisions for me that literally were going to change my outcome and could have ended my life,” Karmo said. “I began to question the healthcare community because she treated me almost like I wasn’t human, deserving of personalized attention, compassion, care, deserving of respect and to be heard, and there were things that were wrong with that.
Tuesday morning, she and Dr. Charles Perou, the Distinguished Professor of Molecular Oncology at the UNC Lineberger Comprehensive Care Center, will welcome attendees to “Setting the Stage for Health Equity, Collaboration and Partnership.” It is sponsored by Tigerlily and the American Association for Cancer Research (AACR).
As part of this special session, there will be poster presentations on socio-economic access, personalized medicine for the underserved, and policy changes to end disparities. There will also be panel discussions around the presentations.
“Last year we brought Black patients to San Antonio from cities that had the highest mortality rates for Black women and had powerful conversations. It was the first time that this number of Black patients from communities facing disparities had attended the conference at one time; and sharing their perspectives as experts, not just sitting in the back of the room,” Karmo said. “I think that was one of the first times people really got to see how ignoring patient populations of color, really position them to not win the fight we’re all trying to win right now, which is one to end disparities for people who are Black and brown living with the highest barriers to care.”
At that event, Tigerlily Foundation also launched the #InclusionPledge. The idea came about when advocates Julia Maués and Christine Hodgson, two white women, promised to use their white privilege to urge others to give more Black women a seat at the table, by committing to only participate in advocacy initiatives – panels, advisory boards, planning committees, programs — that include the experience of Black women. The three friends, Karmo, Maues and Hodgdon, brainstormed about the urgency of ensuring anti-racism, and Karmo decided to expand the pledge — making it a tangible framework to ensure specific, measurable action to eradicate barriers, and she took the pledge worldwide.
Karmos says the pledge is a rallying cry and call to action, as Tigerlily Foundation encourages pharmaceutical companies, clinical research organizations, clinicians, healthcare systems, healthcare payor systems and physician organizations and groups to stand up and join those efforts with their own specific actions to end disparities. She said, “It’s vital they commit to health equity by joining Tigerlily Foundation’s #InclusionPledge for Black women.”
Karmo says she’s thrilled the conversation has moved from off-site hotel of last year to the main stage of #SABCS20. It is now incumbent upon those attending to act on what they learn and hear to as Karmo says, “use their privilege for power”.
“If I, as an immigrant, Black, woman, patient, single parent can bring this to the forefront of a global conference and a worldwide audience,” Karmo said, “imagine what can happen if every attendee did one thing and used their privilege to amplify the message, commit toward ending barriers, and examines how their biases and lack of action are impacting the very lives they work to save.”