• Alysa Salzberg

Why representation is important in the breast cancer community - and healthcare in general

These days, the term “representation” can often seem like a buzzword. But it goes much deeper than that. A profile on the website Healthline shows just how important representation can be for patients - in this case, patients with breast cancer.

The article asks us to imagine being diagnosed with breast cancer. You’d feel afraid and also want to know what to expect. But what if you did an online search for “bilateral mastectomy” and only found photos of people with skin different from your own? By and large, this is the case for African American breast cancer patients.

Not seeing what such an intervention would look like on a body similar to their own can affect patients in a number of ways. One that many of us might not expect is diminishing a patient’s trust in their doctor. As breast cancer survivor Jasmine Souers explains,

“[N]ot being able to find images of women who look like me made me question the recommendations from my doctor. I wondered whether I was being asked to do something other Black women weren’t.”

Sadly, Souers isn’t the exception. Mistrust of doctors is a common issue for African American patients. A recent poll found that 7 out of 10 African Americans believe patients can be treated unfairly because of their race. 25% of Black women report being treated unfairly by medical professionals.

Representation is important for patients who are looking for a community and for specific advice and images related to their personal experience and appearance. But it also has an impact on medical research. The Healthline article points out that while Black women are nearly 40% more likely to die from breast cancer than non-Hispanic white women, they make up only about 6% of participants in clinical trials.

The situation seems bleak, but fortunately, there are people working to improve it. These include Souers and her fellow breast cancer survivor Marissa Thomas. In 2019, the friends founded For the Breast of Us, an organization and website that builds community and gives patients information as well as support.

While the site was inspired by a lack of representation of African American women in breast cancer images, research, and community, it has expanded to include all women of color.

The site’s main page features a burst of positivity, with images of smiling women of different sizes and racial and ethnic backgrounds showing their mastectomy results. There are also informative articles on things like recovery, medical research, and health and fertility issues specific to breast cancer patients and survivors, as well as personal essays on a variety of topics.

Luckily, Souers and Thomas aren’t the only ones promoting patient representation and offering resources specific to their community. In the medical field in general, patient representation and health equity are being studied and encouraged. In 2020, the US government even launched The Healthy People initiative, which works towards giving all Americans equality in their healthcare experience.

The issues behind patient representation and health equity are far from resolved, of course, but at least there’s progress. And thanks to organizations like For the Breast of Us, breast cancer patients of color have a way to find resources specifically for them - not to mention a community to remind them that they’re not alone in their fight.




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