Black Patients Can Have IBD Too

When Shawn Bethea, a Black woman from North Carolina, was a teenager, she visited the emergency room multiple times with excruciating abdominal pain, no appetite, and complaints of exhaustion — all warning signs of inflammatory bowel disease (IBD).

Every doctor was dismissive of her pain. One physician even said the cause was “growing pains.” Shawn was in tremendous agony during this time, both physically and mentally. Only after her symptoms got progressively worse — including an episode of severe blood loss — was she finally diagnosed with ulcerative colitis, a form of IBD.

Sadly, Shawn’s experience is not uncommon.

IBD can be difficult to diagnose, as there are no simple tests and other diseases often need to be ruled out first. But it can be particularly difficult for Black patients. Many doctors incorrectly assume that IBD doesn’t affect patients of color and misdiagnose them with conditions like irritable bowel syndrome, leading to further delays in diagnosis and causing unnecessary suffering and disease progression for patients like Shawn. In fact, Black patients presenting with textbook IBD symptoms, like iron deficiency and chronic diarrhea, were 91% less likely to get an appropriate workup for IBD.

Beyond getting to an accurate diagnosis faster, physicians also need to take proactive steps to improve the disparities in the quality of care, as well as the outcomes, that Black IBD patients experience.

The first step is to acknowledge and eliminate the prevailing bias among many physicians that IBD is exclusively a white disease. This is in part due to minimal data about the extent of IBD in patients of color; the Crohn’s & Colitis Foundation and the CDC are working to change that. We do know without a doubt that this disease does not discriminate based on racial or ethnic background, and doctors should know this too.

We hear countless stories like Shawn’s. All too often, Black patients are met with skepticism when describing symptoms to emergency room doctors or primary care physicians. It can take multiple visits before a doctor even acknowledges the possibility of IBD. In that time, patients could face increasingly worse symptoms and greater disease progression. Research proves it: across multiple studies, IBD patients of color present with complications or more advanced disease, potentially pointing to delays in diagnosis as a factor.

Bias can play out in other ways as well. Too often we hear from Black patients that they encounter skepticism beyond the question of whether they might have IBD. For instance, there are countless stories of doctors assuming Black patients are feigning symptoms to obtain pain medication or notions that Black patients have a higher tolerance for pain. These dangerous and often racist assumptions contribute to the barriers that Black patients face to receiving an accurate diagnosis and the care they desperately need. This is part of the larger challenge of systemic racism in healthcare, where we often see unconscious biases and other structural factors underlying major disparities in treatment and outcomes for Black patients across diseases and conditions.

At the same time, the pernicious influence of systemic racism exists beyond hospital walls and plays a huge role in patient health. Black IBD patients can face greater obstacles in receiving quality care simply because of inequities in socioeconomic factors.

Black patients are more likely to have an income below the national median than patients of other races, and a study found that IBD patients of a lower socioeconomic status had higher rates of hospitalizations for IBD, ICU admission, use of high-dose corticosteroids, and death. Income level — a factor completely separate from the medical setting — can literally be life-or-death for some patients.

Another study found that 70% of Black IBD patients lacked adequate social support, meaning they didn’t have people in their neighborhood they can trust or rely on, compared with 47% of white patients. Patients who lacked social support faced a higher risk of financial hardship due to medical bills, financial distress, and lack of affordable healthcare, creating further obstacles to receiving quality care. Similarly, Black IBD patients were more likely to report concerns about the cost of care compared with white patients.

Doctors must be cognizant of these factors and invest the time and attention to ensure that patients who are facing financial or other hardships have the support and resources that they need to get treated and feel better.

Every physician, from primary care providers to ER providers to GI doctors, must actively work against the misleading trap of prior misdiagnoses or their own biases, and really listen to patients who are experiencing IBD symptoms, regardless of their race. They also need to consider how social factors and racism can impact the health of Black patients and connect people to additional resources when needed. This is true not only for IBD patients, but for all Black patients with chronic illnesses.

Doctors can and should be able to ask the right questions and provide quality, comprehensive care to IBD patients of all races — but broader change is also critically important. At the systemic level, education and training specifically focused on the link between inequities and health can help physicians get to the root of factors that affect IBD patients’ outcomes. Without real investment in change, we will continue to see these staggering, yet preventable, disparities in health outcomes for Black IBD patients.

Adjoa Anyane-Yeboa, MD, MPH, is a gastroenterologist at Massachusetts General Hospital.

Michael Osso is President and CEO of the Crohn’s & Colitis Foundation.