LISTEN: Black communities in Georgia have disproportionately high fatality rates from certain diseases. But less than 5% of participants in clinical trials for treating chronic diseases and cancers are Black. A national initiative is seeking to change that. GPB’s Ellen Eldridge has more.
Maimah Karmo found a tumor while conducting a breast exam when she was 31.
"Thanks to my mom, who was a nurse who taught me previous exams at 13, I knew my body enough to know that the lump wasn't there before and that it was important that I got it, you know, examined, Karmo said.
Despite immediately asking for an exam and mammography, health care professionals turned her away.
"The radiologist kind of like blew me off," Karmo said. "You're too young."
Karmo said she was told the lump was a cyst, not a tumor, and she should come back when she's older.
The lump, which started about the size of a pea, continued to grow.
When Karmo returned to the doctor, the lump wouldn't aspirate, meaning there was no fluid to draw out of a cyst.
She pushed for a biopsy.
"The lump wasn't aspirating, so it made sense that it was a tumor," Karmo said.
Despite her continued efforts, Karmo was dismissed for months and her appointments were delayed.
"When I finally got the biopsy, the doctor called me the next day and told me that it was, in fact, breast cancer."
Roughly nine months after feeling a pea-sized lump in her breast, Karmo was diagnosed with Stage 3 triple negative breast cancer.
"This is the most aggressive subtype of breast cancer and, until three years ago, had no targeted treatment in any setting," Karmo said. "If I waited, I would be dead today."
Socioeconomic factors like a lack of access to information and preventative care, being uninsured or under insured, and not having available services contribute to women of color discovering their breast cancer at a later stage, but Karmo took all the right steps.
"I lived in a community that had hospitals; I had access," Karmo said. "I had all the things, and I acted as my own self advocate," "I found a lump and despite all the things I did, I could still die because there was no treatment for women who look like me, which means women who are younger and/or of color."
She started The Tigerlily Foundation to support Black women with breast cancer, raise awareness about clinical trials, and encourage conversations about and participation in clinical trials.
"We just finished doing a national tour, going to cities and having conversations with people in community centers at their shows, at beauty events, talking about clinical trials," Karmo said. "Making it a part of the conversation and not something scary."
Changing the narrative around clinical trials needs to change to a way that's empowering: that's the idea behind the My Living Legacy campaign.
Sharing her experience with friends and family helped raise awareness of the need for better treatment among their community, and family gatherings during the holidays are the perfect time to discuss health care and the importance of representation in clinical trials.
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Breast cancer is the second leading cause of cancer deaths among Georgia women, and Black women in the greater Atlanta area are 30% more likely than white women to have breast cancer diagnosed at a later stage. They are also 45% more likely to die of breast cancer.
Mutation of the BRCA1 gene leads to triple negative breast cancer, which is deadly in Black women, said Dr. Veena Rao, professor of obstetrics and gynecology at Morehouse School of Medicine. She has been studying the gene since its discovery in 1994.
"It's all early detection," Rao said. "And if you have a family history, then you can get tested early to see whether that particular mutation is there in the family."
Karmo said an early diagnosis isn't as helpful without treatment, which is why she advocates for clinical trials that include women of color.
"You can't survive cancer if you have no drugs to treat that person's body," Karmo said. "Black people are dying at much higher rates than white people. And that's the fact."
Out of the more than 32,000 people who participated in drug trials in 2020, 75% were white, 11% were Hispanic, 8% were Black, and 6% were Asian, according to the Food and Drug Administration.
While there is a real history of abuse against people of color in clinical trials, representation is paramount to finding effective treatments and cure. A study published in the Journal of Health Care for the Poor and Underserved found the primary barrier to participation of Black people in medical research is mistrust, which stems from historical events including the Tuskegee syphilis study and is reinforced by health system issues and discriminatory events that continue.
Karmo said that shouldn't scare people away.
"We have a choice to make. We can either just sit back and let the past define our future, or we get involved in policy change to protect people who are going to trials," Karmo said. "We address Black people's needs. We make sure they're protected and they feel safe."
