Crohn's disease, one of the two most common types of inflammatory bowel disease (IBD), is on the rise in people of color, yet it's often overlooked – and underreported – among minority communities.
The disease, which shows up in the form of inflammation flare-ups in the digestive tract, isn't historically associated with people of color. That can cause doctors to spot it less or downplay it when you start showing signs of Crohn's. This can affect how quickly and accurately a doctor diagnoses you and whether you get timely and good treatment.
To help you understand why there are racial inequalities in Crohn's disease diagnosis and care, take a look at some of the reasons people of color have different experiences with the disease and what you can do to make sure you get accurate testing and treatment that meets your needs.
How Might Race Affect Crohn's Disease Diagnosis and Treatment?
Many things can have an impact on how you're able to spot and manage Crohn's disease, depending on your race or ethnicity, which can then lead to different outcomes.
Census reports show people of color are – on average – more likely to have lower incomes than white households or live in poverty. That can affect their Crohn's experience. These socioeconomic inequalities can alter your ability to afford health care, travel to appointments, and more.
Hospitalizations. Black people with Crohn's are more likely to go to the hospital for a disease-related reason compared to white people. But that likelihood changes depending on your income. The more money you make, the less likely you'll end up in the hospital for something Crohn's related – and vice versa. One possible reason for this is that a higher income may allow you to use health care more, so you don’t end up in the hospital.
When it comes to outcomes, people with the disease who have a below-average median income have an almost 30% higher chance of in-hospital death.
Surgery. People of color with lower incomes who wind up in the hospital for IBD-related issues are usually less likely to get surgical care, too. Whether surgery is not recommended, the patient doesn’t want it, or they’re not offered it, we don't quite know. The reasons are unclear.
Regular care. Money can keep you from getting the routine care that Crohn's disease demands. Studies show Black people, in particular, are more likely to face financial burdens like trouble affording health care and trips to their doctor's office, which can affect treatment. They are also less likely to see a specialist regularly and have a higher chance of delaying appointments because of financial concerns.
Access to good care
Because Crohn's disease flares up and calms down in waves, access to doctors, appropriate treatments, and regular follow-ups are essential to getting it under control. But there are some barriers minority groups face that can cause inequalities when they need to test for and treat Crohn's.
Health insurance. This can be related to income too, since health insurance affordability is another barrier to care. White and Asian patients with IBD are more likely to have private insurance than Black and Hispanic patients, who are more likely to have coverage with Medicaid or are uninsured.
Insurance is directly linked to your ability to afford and get the care you need, so people without coverage are seven times more likely to pass up treatment. Since Crohn's is a disease that needs regular follow-ups, labs, procedures, and more, access to health insurance is crucial. Not having it can lead to worse outcomes.
Health insurance and race can also play a role in a proper diagnosis. One study found that Black or publicly insured people who showed possible IBD symptoms were less likely to get appropriate tests for a diagnosis, compared with those who were white or privately insured.
Access to medication. People of color are less likely to use medication for IBD. But we don't know whether it's because health care providers offer medication to minorities less often, people of color don't accept medicine as frequently, or if there's a problem with access to the medicine.
Timely diagnoses. Because Crohn’s disease symptoms vary and can be unclear at first, a diagnosis can often be delayed 5-9 months. And people of color may face additional barriers. Black children and young adults, for instance, tend to get diagnosed with IBD later in life. People of color also encounter problems or end up with a more advanced disease, which could be evidence of a delayed diagnosis.
Late diagnoses can be caused by several factors, including:
- Limited access to doctors
- Lack of knowledge about the disease
- Certain perceptions and attitudes about IBD like Crohn's
- Traditional belief that IBD primarily affects white people
- The possibility that IBD symptoms may be different for minorities
Treatment works better when you follow your doctor's suggestions. But how much you know about Crohn's can also impact how strictly you follow the plan. And that affects the outcome of your treatment.
If you know less about the disease, you may be more likely to see IBD as an intrusion in your life. And that might make you less likely to stick to a treatment plan. Some small studies suggest Black and Hispanic people may have less knowledge about the disease.
How to Avoid a Missed Crohn's Disease Diagnosis
The right diagnosis at the right time can make all the difference to your health and management of Crohn's disease. It can even affect your odds of surgery down the road. Given that there is no single test to confirm the disease, and its symptoms are similar to those of other conditions, it can be easy for doctors to overlook it.
To keep a missed diagnosis from happening, here are some things to watch for:
- Your doctor downplays your symptoms
- A language barrier between you and your doctor
- Short discussions with your health care providers
- Lack of testing
- Lack of communication from your doctor, such as telling you about test results
- Unreasonable delays at the doctor's office
- Differences in diagnostic tests covered by your insurance and potential out-of-pocket costs
Tips for Getting the Right Crohn's Treatment for You
Crohn's disease feels different for everyone, and there are many ways to treat it. The good news is there are plenty of things you can do to make an informed and confident decision about your care.
While your doctor will likely consider factors like your medical history, how bad your symptoms are, and whether they've gotten better or worse over time, you play an important role in treatment choices, too. Communication with your doctor is key here. They're the medical experts, but only you know how you feel. To come to a decision that combines your insight and your doctor's, try these communication techniques:
- Make a list of questions or thoughts about your treatment and take them to appointments.
- Be open about your symptoms.
- Take a close friend or family member with you to the doctor if you need help communicating or voicing your needs.
- Let your doctor know what's most important to you in your treatment journey, including your goals and preferences for care.
- Ask about each treatment's pros and cons.