On a recent episode of The Scope With Dr. K, Melodie Narain-Blackwell, a Black and Indian patient-turned-advocate, shares her harrowing, decades-long journey to diagnosis with inflammatory bowel disease (IBD) — and what she’s doing to make sure other patients of color have a better experience.

Episode Takeaways:

• Narain-Blackwell’s struggle to get a diagnosis — despite access to top medical providers — challenges common perceptions of “barriers to access” in healthcare.
• Narain-Blackwell discovered a whole community of patients who faced similar challenges — highlighting a widespread need to address racial bias in GI care and advocate for change.
• Narain-Blackwell says the best way to help is to learn more about patient communities of color and the challenges they face. Find out more at COCCI.org.

 

“I absolutely believe bias and stigma were part of the trajectory in the delay of my diagnosis,” says Narain-Blackwell. “I looked like the symptoms and the disease. The only thing that didn’t look like [the disease] was my ethnicity.”

The delay in Narain-Blackwell’s diagnosis wasn’t due to the typical barriers to care. She had health insurance, reliable transportation, and access to some of the top healthcare providers in the Washington, D.C., area. She ate healthy foods and regularly went to the doctor. Still she struggled to access the care she needed because she was overlooked by not one, but many healthcare providers.

When Narain-Blackwell shared her story on social media, the floodgates opened — and she began to realize just how widespread racial bias is in IBD care. In response, she created a Facebook group called Color of Crohn’s and Chronic Illness (COCCI) as a space for people of color with digestive diseases. As she began hearing more patient stories, she realized the gaps in GI care extended beyond the exam room and patient education materials to clinical trials and research.

The more Narain-Blackwell learned, the more she wanted to push for structural change. She converted COCCI into a nonprofit patient advocacy organization dedicated to improving health equity for patients of color with IBD and other chronic gut health conditions.  She says, “Having this space to not only have these challenging conversations but to actually have the ability to find resolution — what’s better than that?”