Ulcerative colitis (UC) causes inflammation in the lining of your colon, or large intestine. It's one type of inflammatory bowel disease (IBD). Crohn's disease is another type. More than 3 million Americans have IBD.
In the past, people thought UC mainly affected white people.
But between 1970 and 2010, cases of IBD went up 39 percent in white people, while it increased 134 percent among people of color.
Today, almost 1 in 3 people with IBD are Black. They face more severe disease, more hospital stays, and a higher risk of death than people of other races. Rates of IBD have also gone up among Hispanic and Asian people. They also have worse outcomes than white people with the disease do.
In the past, it was hard to know how UC affected people of different races because very few studies included people of color. That's changing. Scientists are starting to learn more about racial disparities in UC. They've discovered that race plays a big role in UC diagnosis, treatment, and outcomes.
How UC Looks in People of Different Races
The specific location of your UC inflammation affects the kind of symptoms you have and the treatment you need. Black people are more likely to have inflammation in their rectum (proctitis) or on the left side of their large intestine (left-sided colitis). People who are of Asian heritage have fewer inflamed areas in their intestines than people of other races do.
IBD doesn't affect just the GI tract. It also can cause inflammation and complications in other parts of the body. Those complications differ by race, too. For example, Black people are more likely than people of other races to have inflammation in their joints and eyes. Hispanic people have more problems with their skin.
Because of the long-held belief that UC mainly affects white people, doctors sometimes don't recognize it in patients of color. In one study, Black people were less likely than white people to get the right tests when they came to their doctor with IBD symptoms such as chronic diarrhea or anemia.
When doctors miss symptoms of UC in people of color, it leads to delays in diagnosis and treatment. That may be one reason statistics show Black people get diagnosed at an older age than people of other races.
When UC isn't diagnosed early, it can progress and lead to complications such as:
- Strictures, areas of narrowing and scarring in the intestines
- Fistulas, abnormal tunnels that form between the intestines and other organs
- Abscesses, areas of infection
- Colorectal cancer
UC Medicine and Race
Treatment for UC usually involves medication, surgery, or a combination of both. Medicines called immunomodulators and biologics work on the immune system to slow the disease and sometimes put it into remission. Corticosteroids stop flares by dialing down the immune system.
People of different races may not get the same medicines for UC. In some studies, doctors were less likely to prescribe immunomodulators and biologics for Black, Hispanic, and Asian people. Doctors also prescribed steroids less often for Black people than they did for white people. Other studies didn't show any differences in medicine prescribing.
Up to 25% of people with UC need treatment in a hospital at some point. Typically this is because they have a severe flare that their medication isn’t able to control.
More than twice as many Black people have to go to the hospital because of IBD than white or Hispanic people. Hospital stays are also rising among Asian people.
Differences in Surgery Outcomes
Most people can manage UC symptoms with medication and diet. But those with more severe symptoms may need surgery to remove their colon (colectomy) or their colon and rectum (proctocolectomy).
Black and Hispanic people with IBD seem to have worse outcomes after surgery than white people do. They need to stay in the hospital longer after surgery, have more complications, and are more likely to return to the hospital later because of post-surgery problems.
A program called Enhanced Recovery After Surgery (ERAS) is helping to improve surgery outcomes for people of all races. ERAS streamlines the process before, during, and after surgery to reduce complications. Research shows that this program equalizes surgical outcomes for people of all races.
What Causes Racial Disparities in UC?
There are a few possible reasons for the disparities in UC outcomes between white people and people of color.
Lack of access to care. UC is a chronic disease that requires long-term treatment to manage symptoms and prevent complications. Having access to a gastroenterologist — a specialist who treats UC — and going for regular follow-up visits is key to having a good outcome.
Studies show Black people are much less likely to see a gastroenterologist or other IBD specialist than white people. Instead, they often get treated in the emergency room after they've already developed complications.
Delayed diagnosis. A lack of access to specialists and assumptions in the medical community that UC is a white person's disease could slow the process of getting a diagnosis for people of color. That may be why they often have disease that’s progressed or have already developed complications by the time they see a doctor.
No insurance coverage. IBD treatments are effective but expensive. Managing UC can cost around $23,000 a year. Insurance coverage can make the difference between affording treatment and going without. That's especially true for people of low income, and Black Americans with IBD typically earn less money than the national average.
The type of insurance you have could also affect your likelihood of having an IBD surgery you need. White and Asian people with IBD are more likely to have private health insurance, while Blacks and Hispanics more often have Medicaid or no health insurance. Research shows that people who have Medicaid or Medicare are less likely to have surgery than those with private insurance.
Outcomes also differ by type of insurance. People with Medicaid are three times more likely to die after UC surgery than those with private insurance. This may be because of longer wait times for surgery.
Problems sticking to an IBD diet. Watching what you eat is an important part of managing UC. Certain foods like raw vegetables, fruits with skin, dairy, and sugar can make flares worse. Eating meals together as a family is a big part of certain cultures. Feeling pressured to eat the same way as the rest of your family could be a barrier to following the recommended IBD diet.
Stopping treatment. Medication is important to managing IBD. Going off IBD medication could lead to worse symptoms and complications. Some studies have shown that Black people cut their treatment short more often than white people do. Other studies found that people of all races were equally good about taking their medication.