More than two million Europeans and 1.5 million people in North America have IBD. The United States has the most cases, with an estimated 1.3 percent of the population suffering from either Crohn’s disease or ulcerative colitis, according to the Centers for Disease Control and Prevention (CDC). While the vast majority of people with IBD are non-Hispanic whites, the CDC also noticed that, among Medicare recipients, non-Hispanic elderly Black adults have shown the sharpest increase in diagnoses. And yet, a new study published in July 2022 in the journal Inflammatory Bowel Disease found that Black and Hispanic patients in the United States are far less likely than white patients to receive a diagnosis of Crohn’s disease or ulcerative colitis. “The best we can do right now is look at the numbers and wonder are minority populations really so much less likely to develop IBD or is this reflective of issues of unequal access to care or underdiagnosis,” says Edward Barnes, MD, MPH, lead author of the study and a gastroenterologist at the University of North Carolina School of Medicine in Chapel Hill, North Carolina. To complete the study, the research team looked at over 39 million health records from 337 healthcare centers around the country over a six-year span. “The data set we chose is informative because it’s one of the few that collects data on race,” says Dr. Barnes. “But this data also means that somebody went to a healthcare center seeking help for what ails them. And, because of systemic issues of insurance coverage, proximity to a healthcare facility, or a reluctance to seek care, we may not have a fully accurate epidemiological picture of IBD.” A study published in March 2022 in Therapeutic Advances in Gastroenterology tried to pinpoint the social barriers that often lead to poor outcomes in IBD, and disproportionately affect Black and Hispanic patients. The study found that more than one-third of the study participants faced financial strains associated with the cost of doctor visits and medicines to control IBD flares. Black and Hispanic patients also reported significantly higher food insecurity compared with white patients. Black and Hispanic patients also tended to suffer from more depression, stress, and social isolation due to their IBD. The researchers noted that interventions that reduce social barriers and address mental health issues may lower the disparities in outcomes across races. Barnes and others have also pointed out that the understanding of who is affected by IBD needs to change in line with the growing ethnic diversity of the United States. Barnes pointed out that because of issues of access, Black Americans are much less likely to see a gastrointestinal specialist or be prescribed biologics that require a trip to an infusion center. A paper published in 2018 in Inflammatory Bowel Disease that Barnes contributed to shows that even though Asians are more likely to have an aggressive type of IBD that leads to colorectal cancer, they are less likely to receive biologic therapy. Older research showed the same treatment disparities for black patients. “One of the consistent things I see in my Black patients with IBD is that by the time they are seeing me, they are in a severe stage of disease and may need surgery or an intensive pharmaceutical intervention,” says Nneoma Okoronkow, MD, a gastroenterologist at HVA Medical Group in Fairlawn, New Jersey. “Far too often I see patients who let their symptoms go because of a deep-seated mistrust of doctors and the pharmaceutical industry.” Dr. Okoronkow went on to explain that her patients will travel more than an hour to see her, because she too is a Black woman. “Their face will just light up when I walk into the room,” she says. “And then they tell me how their symptoms have been overlooked by other doctors.” They also relish the opportunity to open up to another woman of color, she notes. Before her patients leave, Okoronkow makes sure they know they have a permanent condition that will never be cured and will require life-long management. Additionally, diet is interwoven with culture, and different foods may trigger IBD flares. So it’s important for patients to open up to their doctor about their diet. “I’ve noticed that when patients of color see a provider of color, they’re much more willing to talk about the foods they eat regularly that are also staples of their culture,” says Sowmya Sharma, MD, a gastroenterologist and IBD fellow at The Johns Hopkins Hospital in Baltimore. “In an inflammatory condition, opening up about diet is extremely important, so patients need a doctor who understands their culture and their foods and can steer them towards alternatives that will not trigger flares.” Dr. Sharma notes that recurring and untreated IBD can lead to malnutrition, malabsorption, and even cancer, which can be fatal for patients. “While the trajectory is improving, it’s still more common for racial minorities to ignore symptoms.”
Not Enough Representation in Clinical Trials
Another factor contributing to the underdiagnosis of racial minorities with IBD is traced back to the fact that few minorities are recruited for clinical studies in IBD. In fact, a study published in September 2021 in Gastroenterology, looked at the inclusion of racial and ethnic minorities in clinical trials for IBD. Researchers found that nearly 40 percent of the studies did not report race, while another 23 percent only reported white participants without mention of other races. It also noted that the percentage of Black and Hispanic participation was very low across all the clinical trials, especially when juxtaposed with the increased incidence of IBD in those populations across the same time frame. “While it is true that minority individuals may be underdiagnosed, the reasons for underrepresentation in clinical trials have to do with both the misperception that IBD only affected people of European descent, shifts in epidemiology in the modern era, and more recently, the very real challenge of finding centers that are able to recruit patients into these trials,” says David Rubin, MD, lead author of the paper and a gastroenterologist at the University of Chicago Medicine. Dr. Rubin and his colleagues stress that recruiting minorities into IBD studies is important because different genetic makeups may have different inflammatory pathways that affect the safety and efficacy of medicines. They also note that the lack of minority participation in clinical trials undermines the doctor-patient relationship since it becomes difficult to engage minority patients in treatments that have not been tested in their demographic. “I believe that there is much more we need to do to address this problem,” says Rubin, who noted that the University of Chicago where he works has launched “a new cultural competency intervention to train our colleagues to address some of these challenges, not only in clinical trials, but also in clinical practice.” Barnes echoed the need for improving minority representation in clinical trials, adding that significantly more research is needed, and accurately identifying the prevalence of IBD in nonwhite communities and its impact on individuals who miss work or feel too sick to engage in daily activities is a first step to addressing the problem. “We hope that a diverse set of experts find this work interesting enough to launch more targeted studies,” he says. “How we get health equity in IBD is a very tricky issue and we’re just starting to see how big an issue it is. We hope this study and others like it start to move the needle forward so we can truly understand and address IBD in minority communities.”
