Thread by @aishuarjun

Let's go! @quidditch424 #NSGC20

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

Erika highlights the Endometrial Cancer Action Network for African-Americans @ECANAwomen as an ex. of a patient/medical provider partnership. They bring together patients & researchers & providing basic education & medical literacy that a patient needs during a cancer dx. #NSGC20

Without increased genetic testing in minority populations we will see more disparities particularly with those associated w/ breast cancer. #NSGC20

Q&A time with @quidditch424 & @altovisee! Submit your questions in the chat! #NSGC20

Q: What does a collaboration to increase access to genetic testing look like? A: Getting everyone into the room to have conversations about challenges. Patients, researchers, providers, etc... Black patients have to build up the trust to go through genetic testing. #NSGC20

Receiving a VUS may make some Black patients feel betrayed by the results so how do we address that? I worry that no one is thinking about how you get genetic testing to Black patients. -ES #NSGC20

I worry that in 20 years cancer is something that's not going to impact White people and it's going to disproportionately impact minorities unless we do the work now. -ES #NSGC20

How do we improve visible & invisible diversity within the profession? Build up the pipeline. Meeting people where they are. Going to HBCUs. Writing op-ed pieces in outlets that are relevant. #NSGC20

Too often people come to miniorties and ask for advice but they aren't listening. Waaah the audio cut out???? #NSGC20

I can't believe the audio cut out just as Erika made the point that people weren't listening. #NSGC20

I can't believe the session is already over. Thank you so much @quidditch424 & @altovisee! I wish we could have continued that discussion for a lot longer. #NSGC20