Chatting with BRCA Advocate, Co-Founder of the Black&BRCA Project & Writer, Erika Stallings

Erika Stallings is making waves in the Black breast cancer community, sharing her experience as a BRCA2 carrier and extensive knowledge around racial health disparities impacting Black women. Her words have been published in The New York Times, O Magazine, The Cut and more, and in efforts to increase Black awareness of hereditary cancer, Erika co-founded the Black&BRCA project at the Basser Center for BRCA. By increasing genetic counseling and testing in the Black community and instigating conversations about family health history and systemic racism in our healthcare system, she’s making a huge difference in many women’s futures. To hear how breast cancer has touched Erika’s life, and her mother’s, and how those experiences ultimately changed her path from attorney to BRCA advocate, read our latest Everviolet Chats below.

How did you find out that you were a carrier of the genetic mutation BRCA2?

My BRCA story really starts with my mother who was first diagnosed with breast cancer in 1993 when she was only 28 years old. After being in remission for fourteen years, she was diagnosed with breast cancer a second time during my senior year of college. My mom decided to undergo treatment at UNC-Chapel Hill’s Lineberger Cancer Center (where I was attending college) and that’s when her oncologist recommended that she undergo genetic testing. We learned in 2007 that she carries a BRCA2 mutation. In 2014, I decided to undergo testing to figure out whether I had inherited her mutation and my testing results came back positive for a mutation in July 2014.

What was your experience with the screening process? And what actions did you take once you found out you were BRCA2 positive?

I often joke with people that my experience with genetic testing was that of an upper middle class white woman. I got a referral to one of the best breast cancer oncologists in New York City through my network, I had great health insurance and I had a job with a flexible schedule so I could go to medical appointments when I needed. I underwent testing in June 2014 at NYU Langone. I had my mother’s medical files so during the appointment we discussed my family history of cancer. After I got the test results, due to my family history, it was recommended that I undergo a risk reducing mastectomy as soon as possible. I had a prophylactic double mastectomy in December 2014. I also currently undergo screenings twice a year to manage the risk of developing ovarian cancer.

We know breast cancer impacts Black women and men differently. What are some of the most important disparities that you feel we all should keep in mind?

There are disparities at every part of the cancer journey (i.e. stage of diagnosis, age of diagnosis, mortality rates). I think the most important one may be the fact that according to the CDC, breast cancer is more likely to be diagnosed at an earlier stage among white women than Black women. We know that when cancer is diagnosed later, it’s harder to treat. That’s why I’m such a big advocate for increased genetic counseling and testing in the Black community. If you can identify the individuals who are at higher risk they can either take risk reducing measures or engage in increased surveillance which increases the odds of catching cancer earlier when it’s more treatable.

What are some common myths concerning cancer and genetics for Black men and women?

I think a huge misconception is that Black individuals are not at risk for carrying BRCA1 and BRCA2 mutations or other hereditary mutations. This misconception means that Black patients may not get the referral from their primary care provider to see a genetic counselor or they may fail to discuss genetic counseling and testing when it may be warranted.

The reality is that Black women may actually be more likely than white women to carry BRCA1 and BRCA2 mutations. A recent study actually showed that Black women have a level of BRCA1 and BRCA2 mutations that is close to the level of mutations seen in the Ashkenazi Jewish population (which is 1 in 400).

I also think providers may assume that Black patients are not interested in genetic counseling and testing. However the research shows that Black patients are actually eager to engage in testing when the benefits are explained to them.

How did your project, Black&BRCA, with the Basser Center come about? What do you hope to accomplish?

I’ve been very fortunate to work with the Basser Center for BRCA as the co-chair of the Young Leadership Council which raises money to support young research investigators. In 2018, the Basser Center launched LATINX&BRCA an educational initiative aimed at the Latino community. In 2019, they approached me to see if I would be interested in working on a similar initiative aimed at the Black community.

I have a lot of ambitious goals for the Black&BRCA initiative but the first is to increase awareness of genetic counseling and testing in the Black community through webinars, blogs, and partnerships. Patients have to believe that genetic counseling and testing is relevant to them before they’re willing to undergo it so I think the awareness piece is the first step. I also just want Black individuals carrying BRCA1 and BRCA2 mutations to have a place that can be a resource. There is a lack of diversity in BRCA awareness campaigns. I remember getting my diagnosis and not seeing any stories online from women who looked like me.

What recommendations or suggestions do you have to potentially make screening, prevention and access to care more available to patients of color?

At a baseline level, expanded access to insurance coverage would go a long way in addressing overall health disparities. In states that expanded access to Medicaid under the Affordable Care Act, there’s data showing improved health outcomes for Black and other minority individuals.

I also think healthcare providers have to rethink the way they label patients. I often hear people say “the patient wasn’t compliant with the recommended treatment” without asking what challenges the patient might have. Do they have a job where they can take time off when needed? Do they have transportation challenges? Asking these questions versus assuming a patient is just not compliant would aid in addressing disparities.

What steps can Black men and women take to stay on top of their increased risk of breast/hereditary cancer?

Start by having conversations about family health history. The Basser Center has a downloadable guide that you can use to collect family health history. Even if you don’t carry a hereditary cancer mutation, if you have a family history of breast cancer you may need to start mammograms or other preventative screenings before the age of 40.

Also don’t be afraid to ask for a referral or get a second opinion if you feel like your healthcare provider is ignoring your concerns.

According to the U.S. Centers for Disease Control and Prevention, Black women are less likely to develop breast cancer, but 40% are more likely to die from it. Why is that the case?

Racism. What I mean by that is that there are a lot of factors that come together to disadvantage Black women when it comes to accessing equitable cancer care and although some of it is linked to socioeconomic status and insurance coverage (or lack thereof) it’s important to remember that class does not fully insulate Black women from health disparities.

Black women are more likely to live in segregated neighborhoods which have lower quality hospitals. Black women are also more likely to be diagnosed with triple negative breast cancer which is a more aggressive form of breast cancer. After a diagnosis, even when controlling for insurance status and socioeconomic status, Black women experience delays in accessing treatment and prolonged treatment. Black women are also underrepresented in clinical trials relating to breast cancer. All of these factors contribute to the current disparities we see.

In what ways do you hope to see the American healthcare system change for the Black community?

I think we often hear about the distrust that Black patients have when it comes to the medical system and I don’t think we talk about the fact that the lack of trust is due to the way the healthcare system has treated Black patients (see e.g. Henrietta Lacks, the Tuskegee experiment, the current maternal mortality crisis disproportionately impacting Black mothers). I want more medical providers and institutions to spend time thinking about ways to rebuild that trust with Black patients and Black communities.

We also need to increase the number of minority healthcare providers. There are numerous studies showing improved outcomes for minority patients when they receive service from a provider of the same racial background/ethnicity.

Looking back, how has your experience with BRCA2 and the Black&BRCA changed you?

Before my BRCA diagnosis, I never envisioned myself being a writer or a public speaker. I was solely focused on succeeding in my career as a corporate attorney. Over the past six years, I’ve really found a voice as an advocate and I hope to someday be in a position to work full-time on figuring out how to expand access to genetic counseling and testing to underserved communities.

Originally published at https://everviolet.com on December 16, 2020.