Location: Manhattan, NY
Erika Stallings has done a lot of thinking about race and medicine. She has researched inherent bias and written about how the American healthcare system is failing black women. Her voice and her advocacy have the added weight of someone with authority on the issue because Erika has lived it. She is a black woman who carries the BRCA-2 mutation, has had a double mastectomy, and is now doing all she can to make sure other women of color have access to the same information and medical interventions that saved her life.
Erika’s mother was diagnosed with breast cancer in 1993 at the age of 28. In 2007, when Erika was a senior at the University of North Carolina – Chapel Hill, her mother’s breast cancer returned. This time, her mother left their small North Carolina town and opted to get treated at UNC, staying with Erika for appointments and procedures. Her UNC medical team did genetic testing and learned that she carried the BRCA-2 mutation, thus explaining her cancer at such a young age and her recurrence. Erika’s mother encouraged her daughter to get tested as well, but Erika wasn’t ready. She was about to start law school at Georgetown University Law Center in Washington, DC and getting tested was not part of her agenda. “I knew if I learned I was positive, I would want to have surgery,” Erika says. “And I was not at a point in my life where I could do that.”
So she waited. She finished law school, pursued a fellowship (that the New York law firm that had hired her funded since the recession had hit and they needed to hold off on her associate position for a year) and then started work as a lawyer. After a few years of getting settled in her job and amassing enough disability leave and savings to absorb any unforeseen medical bills, Erika decided it was time to get tested. She learned in 2014 that she was positive for the BRCA-2 mutation. Her NYU medical team told her that her mutation, coupled with her mother’s medical history, indicated she should have the mastectomy sooner rather than later. Erika was 29 years old; her mother’s cancer had first blindsided her at age 28. Erika underwent a double mastectomy in December 2014.
When Erika turned to the resources and guides she could find online and in medical publications about her mutation and her surgery, she was dismayed to find that her experience as a black woman was largely absent. “I didn’t see diversity in any of it,” she says. She realized that she could help fill that void. “If I am not seeing it, maybe I should write about it,” she remembers thinking. She wrote an article for Jezebel, a women’s online media site, What No One Tells You About Your BRCA Mutation.
Her article led to more advocacy and leadership. She started a blog and explored how race interacts with health. Last year she wrote an article for O Magazine about racial disparities in U.S. healthcare. She was also asked to serve as one of the founding co-chairs of the Young Leadership Council for the Basser Center at the University of Pennsylvania that is solely devoted to research on cancers caused by BRCA. Erika and her co-chair help host fundraising events to raise money for BRCA research. At the end of each year, they donate the money they have raised to a young researcher. The first recipient was someone researching breast cancer and the last two recipients have focused on pancreatic cancer research.
Erica is not just writing about racial disparity; she is trying to combat it in other ways as well. She has partnered with the Association of Black Women Attorneys to sponsor panels aimed at black women to talk about cancer genetics. She shares her own experience and writes and talks about it to “do the education that will raise awareness among the population,” she says. She is also trying to sound the alarm about how underrepresented minorities are in clinical trials. In the United States, black women have a higher mortality rate from breast cancer than white women do (a statistic that holds up across most cancers). Black women are more likely to be diagnosed at an advanced stage for endometrial cancer and they are three or four times more likely to die in childbirth than white women. Erika is encouraged by some of the changes she has seen and some of the ways medical schools and hospitals are trying to address the problem. There are now initiatives in place to do implicit bias training at medical schools. At NYU, donors have funded patient navigators who go out into minority neighborhoods and help them get the treatment they need at an academic center that has better resources to help them.
For Erika, her advocacy has given her the sense that everything happened for a reason.
“This is why this happened,” she says. “I am meant to be this voice.” She has often heard from people who have read her articles or whom she meets at events who tell her she was the reason they sought treatment or became aware of how to advocate for themselves. “I didn’t find my people until after I was treated,” Erika says. “To be able to be that resource at the start of people’s journeys, that is really meaningful.”
To read some of Erika’s writing and advocacy: