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What's at stake here? Black women are less likely to participate in genetic risk assessment & counseling. Less likely than white women to know about risk reducing therapies. #NSGC20
Black women also have less knowledge about risk factors for breast cancer & perceive themselves to be at lower risk for developing it. All of this contributes to the fact that Black women in the US are 40% more likely to die from breast cancer than white women. #NSGC20
Erika also shares her personal story of discovering that she is a carrier of a BRCA mutation. #NSGC20
Erika brings up the question of whether she would have even known that she was a carrier if she hadn't gone to a college at UNC & her mom sought care for breast cancer at UNC bc she grew up in a small town where there was limited access to genetic counseling. #NSGC20
Erika shares the privileges that she had in accessing testing: access to academic medical center, access to GCs, insurance, job w/ flexible schedule and high medical literacy due to her social network. #NSGC20
And highlights that all of these privileges had to come together for her to access the care that she received. And that's not always the case for everyone. #NSGC20
Erika highlights some of the challenges & barriers in DEI in genetic counseling & testing: lack of awareness about what genetic counseling & testing is, why it's of benefit & protections associated w/ genetic testing. #NSGC20
A solution Erika offers is to target outreach to orgs that have credibility in the Black community such as churches, historically Black sororities and fraternities, Black publications such as Essence, ZORA, Refinery 29 Unbothered. #NSGC20
"You have to meet people where they are to get them this information." - Erika #NSGC20
Another challenge: there is a lack of Black women and other minorities in BRCA/hereditary cancer awareness. When Erika first learned she was a carrier she spent a lot of time looking for resources or support that was aimed at Black women and there really wasn't anything. #NSGC20
We know that undergoing genetic counseling and testing requires people to understand that there is something relevant to them but that's not going to happen if there aren't any stories or experiences of people that look like them. #NSGC20
Another challenge that Erika brings up is the lack of education among primary care physicians. And that due to existing disparities, Black women are more likely to discuss risk for breast & ovarian cancer w/ a PCP or OBGYN vs specialist. #NSGC20
And that lack women are less likely to be referred for genetic counseling even when they meet the criteria. #NSGC20
And that there is a perception that BRCA only impacts Ashkenazi Jewish women. <- This also extends to other genetic testing as well. #NSGC20
Some solutions that Erika suggests include: targeted education/training for PCPs and OB/GYNs on "red flags" for referral to genetic counseling. <- This is also why we as a GC profession need to step up & educate other HCPs. #NSGC20
Should we consider amendments to NCCN criteria because the criteria doesn't do a great job of identifying high risk Black women at the moment. #NSGC20
Erika recommends a soon to be published article in the Journal of Clinical Breast cancer (someone double check me) with more information about breast cancer in Black women. #NSGC20
Call to Action: How Can We Work Together? We can't do advocacy work alone. #NSGC20
