Let’s Talk BRCA and The Angelina Effect

By Yassmina McDonald | January 10, 2019

The rate of BRCA testing increased after Angelina Jolie’s article in Time Magazine in 2013, which some labeled the Angelina Effect; however, the disparity among those who should be tested and the groups who are tested needs to be addressed.

For many of us, our first introduction to the acronym BRCA occurred in 2013 when Angelina Jolie announced that she is a BRCA carrier, and chose to undergo a preventative double mastectomy, surgical removal of both breasts (Jolie, 2013). This encouraged some of us to start conversing with family, friends, and medical providers about BRCA. These conversations made us realize our lack of information and resources to comprehensive medical health care as compared to a wealthy woman such as Angelina.

Jolie was called a feminist hero for bravely writing about her health, educating women from her own experiences, decreasing the stigma of mastectomy threatening womanhood, and blurring the lines between our perception of healthy and ill. Even today in 2019 some patients only recognize what BRCA is after referencing it as “the Angelina Jolie Gene.” While Jolie’s article started a nationwide conversation around BRCA and is believed to have led to an increase in BRCA testing, I think the article missed an opportunity to address health, race and socioeconomic disparities in women who have access to comprehensive testing, diagnosis, and treatment. Breast cancer outcome disparities between African American women and white American women can be attributed to socioeconomic disadvantages that are more prevalent in the African American community. A recent study by Jones & al states that black women have a higher incidence of early-age onset breast cancer before age 50 and have a higher mortality rate from breast cancer compared to White women (Jones & al. 2017). Now—Let’s talk about BRCA.

What is BRCA?

BRCA stands for Breast Cancer susceptibility gene; it is a genetic mutation that increases one’s risk for breast and ovarian cancer. BRCA1 and BRCA2 are two different genes that have been found to impact a person’s chances of developing breast cancer. Every human has both the BRCA1 and BRCA2 genes. They are known as tumor suppressor genes because they help to prevent breast cancer. However, in some people one of the genes becomes altered or broken and does not work properly: This is called a gene mutation. A gene mutation is a permanent alteration in the DNA sequence that makes up a gene, such that the sequence differs from what is found in most people.

What is the risk of developing breast cancer?

The risk of developing cancer is multifactorial such as current age, personal cancer history, family history of cancer, environmental exposure, and other factors. While these genetic mutations are associated with a higher risk of breast and ovarian cancer, they do not necessarily lead to a likelihood of a diagnosis. Research published recently provides approximate increased risk by age in comparison to the general population. BRCA1 mutation carriers have a 55–65% risk and BRCA2 carriers have a 45% risk of developing breast cancer by age 70 (Jones & al. 2017). This is also illustrated in the table below (Estimated Risks for Cancer with BRCA Mutations, 2018).

It is recommended that providers refer women who have a family history of breast or ovarian cancer to genetic counselors for BRCA testing. Although rates of BRCA testing have increased overall, black women are sent to genetic counselors and screened for BRCA less often than their white counterparts (Kmietowicz, 2016; Armstrong 2005 ). The screening and mortality disparities provoke the questions: who do medical providers actively view as at risk and which women see themselves as at risk for breast and ovarian cancer?

Knowing your BRCA status is just the first step in understanding your risk. For BRCA1/BRCA 2 mutation carriers, national guidelines recommend the following:

Removal of both fallopian tubes and ovaries (also known as risk-reducing bilateral salpingo-oophorectomy) between ages 35-40 (or after one does not desire childbearing).
Hormonal/surgical forms of risk reduction such as bilateral mastectomy are also recommended (Prevalence of BRCA1 and BRCA2 Mutations and Associated Cancer Risks, 2018).

My Ask for Providers and Sisters

Illustration by Rebekka Dunlap; Courtesy of Oprah.com

Without appropriate BRCA testing and information, we omit women’s right to understand their risk for breast/ovarian cancer and how to manage it. Thus, I write to providers and patients from the intersection of being a black woman and a Nurse Practitioner. I am more conscious than most about improving health disparities as race is something I think about on a daily basis.

For me, race is more than an important research topic or category on a database, it is central to my identity and lived experiences. Improving the screening disparity is multimodal; I urge my fellow providers to expand their lens and recognize medical responsibilities to uphold screening guidelines and provide quality care for patients.

“Caring for myself is not self-indulgence it is self-preservation and that is an act of political warfare." - Audre Lourde

For My Sisters

Self-preservation as an act of political warfare may initially sound radical, but after thinking about this deeply, it makes perfect sense, especially amidst the current political climate. Audre Lorde directed this statement towards people at the margins, whom our political systems often work against-remember there is a difference in not caring and actively working against groups of people. The act of caring for yourself and thriving is an act of political warfare when your political systems want to see you defeated.

To my black sisters who often don’t have advocates or champions such as Angelina Jolie, let’s continue the conversation to educate and acquire the language needed to advocate for ourselves and equitable reproductive health care.

Sources: Let’s Talk BRCA Blog Sources

Posted in Young Advisory Leadership Council