Cases of inflammatory bowel disease (IBD), which includes Crohn’s disease, almost doubled worldwide from 1990 to 2017. About 1.6 million Americans have IBD. It was once thought to hit mainly white people in places like Europe and North America. But the rates of Crohn’s disease are increasing among other people, too.
Information about how – and whether – Crohn’s disease impacts people of color differently is sparse. But doctors and researchers are getting better at understanding how imbalances across the health care system affect people of color generally, and more specifically in diseases such as Crohn’s. Misunderstanding among doctors and patients about who gets Crohn’s, as well as a lack of access to specialists and effective care, can mean people of color are sicker before they receive a Crohn’s diagnosis or treatment.
How Crohn’s May Affect People of Color Differently
Crohn’s disease is a complex disorder. While its exact cause is still unknown, researchers believe your genes, immune system, and environment all play a role.
Studies have shown that the rates of Crohn’s and IBD increase when people move to countries where the disease is more common. Finding out why may lead to greater understanding about how your environment contributes to IBD.
Symptoms of Crohn’s can appear anywhere along the digestive tract. They can also show up outside the GI tract, affecting the skin, eyes, joints, kidneys, bones, and sometimes the liver. Data suggests that the areas of the GI tract impacted by Crohn’s and a person’s symptoms can differ among racial and ethnic groups.
For example, Crohn’s inflammation appears more extensively throughout the intestines for Asian, Black, and Latino people than for white people. They also were more likely to report symptoms of Crohn’s outside the intestine, including joint pain. Latino people were more likely to have Crohn’s-related red, tender nodules under the skin called erythema nodosum. Black people were more likely to have eye complications such as irritation or swelling.
Factors That Affect Patient Outcomes
People of Asian descent were the least likely to have a relative who has Crohn’s. Latinos and Blacks reported a family history of the disease closer to 20%. Without knowing someone with Crohn’s disease, people may not be aware of it or how it’s treated. This lack of awareness may mean that people dismiss their symptoms or think something else is causing them.
Black and Latino people were more likely to say their Crohn’s symptoms were because of factors like smoking (although smoking is a risk factor for Crohn’s disease), infections, stress, or allergies, according to one study. They were less likely than white people to talk with friends and family members or look for more information about the condition. Knowing more about Crohn’s may help improve patient trust in their care and their feelings about the disease.
Barriers to Equitable Treatment
Studies have shown that patients of color tend to be diagnosed at later ages than white patients. Even when these people show symptoms of Crohn’s disease, doctors were less likely to order tests to see whether they have it, particularly if the patients were Black or had public health insurance.
Seeking care at a later stage of the disease can lead to worse health outcomes such as:
- Strictures (bowel scarring) and fistulas (links between organs that shouldn’t be there)
- Infection
- Surgery
- Bowel cancer
- More trips to the emergency department
- Higher rates of hospitalization
The lower the patient’s income, the more likely they are to endure more serious disease, longer hospital stays, and even death, although Crohn’s is not typically fatal.
Studies also showed that Black peoplewith Crohn’s were less likely to be prescribed medicines used to treat intense disease or symptoms such as strictures, even though they had higher rates of these complications. Latino, Black, Asian peoplewere all less likely to receive biologic drugs to treat their Crohn’s than white people who have Crohn's.
Creating Equitable Care for Better Outcomes
Health equity means consistent standards of treatment no matter race or ethnicity, and removing barriers to care. The chronic (long-term) nature of Crohn’s disease means patients need to have access to quality care throughout their illness. Outside of bias and misunderstanding in the health care system, certain social factors may get in the way of treatment for people of color, including:
- Lack of access to quality care and health insurance. Underinsured and uninsured people may have less access to specialists and end up going to the emergency room as their symptoms get worse.
- Food costs, unhealthy food options, and a lack of good grocery stores where they live.
- Language barriers to accessing care and treatment.
- Difficulties in staying consistent in medication use either because of cost or because patients stop taking meds when they feel better.
- Cultural stigmas around GI symptoms and diseases.
- Wider issues of financial stability, safety, education, racism, and discrimination outside the health care setting.
How You Can Help Yourself
Increased attention to the barriers that prevent better access to health care and treatment for people of color brings hope. In the meantime, patients of color with Crohn’s can help themselves by:
- Learning more about the disease and the many ways it may affect you.
- Asking questions of your treatment team about the ways Crohn’s affects you.
- Enrolling in clinical trials, despite the historical and well-founded mistrust of medical research of some minority groups, so that researchers can better understand how and why Crohn’s may affect people of color differently.
- Finding support, either online or through your family and friends.
When doctors focus on obstacles people have to treatment, such as the lack of a nearby drugstore, it can make a big difference. Even when patients of color had greater disease complications at the start of their Crohn’s treatment, they ultimately fared just as well when they had the same access to treatment and care.
Show Sources
Photo Credit: Cavan Images / Getty Images
SOURCES:
BMC Gastroenterology: “Experiences of Ethnic Minority Patients Who Are Living with a Primary Chronic Bowel Condition: A Systematic Scoping Review with Narrative Synthesis.”
Crohn’s and Colitis Foundation: “Diversity and Inclusion,” “The Facts about Inflammatory Bowel Diseases,” “Living with Crohn’s Disease,” “Pragmatic Clinical Research.”
Gastroenterology: “Effects of Race and Ethnicity on Diagnosis and Management of Inflammatory Bowel Diseases.”
Harvard Health Publishing: “Is IBD an Underrecognized Health Problem in Minority Groups?”
Therapeutic Advances in Gastroenterology: “Social Barriers Influence Inflammatory Bowel Disease (IBD) Outcomes and Disproportionally Affect Hispanics and Non-Hispanic Blacks with IBD.”
U.S. Department of Health and Human Services, Healthy People 2030: “Social Determinants of Health.”
