The incidence of inflammatory bowel disease (IBD) has risen significantly in recent decades, and some racial and ethnic minority groups have borne the brunt of that increase. Between 1970 and 2010, the incidence of IBD rose by 39% among white Americans. However, during that same period, the incidence of IBD among non-white Americans jumped by 134%. That’s according to a 2019 population-based cohort study in Therapeutic Advances in Gastroenterology.
There are multiple causes of ulcerative colitis and Crohn’s disease, the two primary medical conditions that comprise IBD. Genetic vulnerabilities, antibiotic overuse, lifestyle factors (such as stress), and environmental exposures (everything from food additives to air pollution) have all been linked to increases in IBD prevalence. It’s not clear why rates of IBD have risen more steeply among some groups than others. But researchers have found that some people face greater barriers to care and treatment—barriers that lead to a heightened risk for serious complications and poorer long-term outcomes.
“The patients who are most likely to face disparities are those who are racial and ethnic minorities, and those with low socioeconomic status or who face inequities in the social determinants of health,” says Dr. Adjoa Anyane-Yeboa, a gastroenterologist at Massachusetts General Hospital and an instructor of medicine at Harvard Medical School. One example of these disparities is a lack of access to appropriate specialist care. “Black patients with IBD are less likely to be under the regular care of a gastroenterologist or IBD specialist,” she says. Researchers have found the same is often true of people who live in rural settings. Delayed diagnoses, doctor-patient miscommunications, and a lack of access to the newest and best drug therapies are among the other challenges that threaten some of these underserved patient populations. And these challenges lead to real harm. Anyane-Yeboa notes an increase in outpatient physician visits, more hospitalizations, a higher risk of severe disease, and greater mortality as a few evidence-backed examples.
Fixing these care imbalances is a challenge, and meaningful solutions will have to address a wide range of social and systemic inequities. “Oftentimes, when we look at solutions to disparities in care, we look downstream at the outcomes,” Anyane-Yeboa says. “But if we really want to make an impact, we need to look upstream at the factors that underlie the disparities.” She says solutions must target not only patients, but also providers, the healthcare system, social and cultural inequities, and “the larger IBD ecosystem,” including pharmaceutical and insurance companies.
Here are some of the solutions that can help fill existing care gaps and ensure that underserved patient populations are better cared for in the future.
Better utilization of virtual care and telemedicine technologies
In many ways, modern health care is nimble and able to quickly adopt and implement new approaches to medicine. But when it comes to the ways providers and patients interact, change can be slow. The technologies needed for mobile and telemedicine have been around for at least a decade, but it has taken a significant catalyst—the COVID-19 pandemic—to push forward adoption of virtual IBD care.
“I’ve always been a big proponent of implementing virtual care, and I do think it can help improve some of the access problems we see,” says Dr. Raymond Cross, professor of medicine and director of the Inflammatory Bowel Disease Program at the University of Maryland School of Medicine.
People with IBD, particularly those with severe or intractable disease, may need to meet with their care team on a regular basis. Even for those who live close to their provider, this can be burdensome. However, for those who have to travel long distances for care, or for those who can’t easily take time off from their jobs or domestic responsibilities, the costs and challenges of regular office or clinic visits may cause them to miss or delay critical provider interactions. The option to hop on a video call instead of traveling to a medical office could solve a lot of problems for these patients. So could live chats with a doctor, a dietitian, or some other member of a person’s care team in situations where they need advice or aren’t sure how to handle their symptoms.
“Individuals in rural environments want more access to virtual care options,” says Noelle Rohatinsky, an IBD researcher and associate professor at the University of Saskatchewan. She says most medical providers are also in favor of adopting telemedicine alternatives—with some exceptions. “When patients are stable and just need routine follow-up or a prescription refill, [providers] see virtual care as quite helpful for those types of interactions,” she says. “But if it’s a first appointment or a new diagnosis, or a person’s illness is severe, they may benefit from an in-person assessment.” Likewise, if a patient is on an infusion therapy or some other treatment that requires in-person administration or monitoring, telehealth isn’t an option.
Rohatinsky says that both providers and patients seem to favor a “hybrid model” that combines in-person visits with virtual care. Cross likewise endorses this approach. “One thing I learned during the pandemic is that if I had to do exclusively virtual visits day after day, I would have significant burnout,” he says. In-person meetings can also help create a stronger provider-patient connection, he says. Plus, they can facilitate follow-up diagnostic tests and multidisciplinary care that may include meeting with a dietitian or other people besides the patient’s GI doctor.
Finally, Cross points out that some individuals in low-income or rural households may not have the kind of broadband internet access needed to facilitate high-quality video calls. “I think virtual care allows us to go further and extend our reach and access,” he says. “But I don’t think it solves all our issues.”
Other experts agree that virtual care isn’t a panacea. “We need GI providers to meet patients where they are and consider new models of care where we see patients in community settings, rather than waiting for them to come to us,” Anyane-Yeboa says.
Expanding provider diversity
Several years ago, Cross helped oversee a research study that had Black and white health counselors talk with people of different races about skin cancer. Even though the counselors spoke exactly the same words—they were all following a single script—some listeners’ willingness to take preventative measures or to see a dermatologist went up if the counselor’s skin color resembled their own. Cross says that study was instructive and contains lessons for IBD researchers and providers. “I think we haven’t spent enough time trying to understand how doctor-patient communication affects patient outcomes,” he says. “I think we need more providers and specialists that look like the patients they’re serving or that can speak more than one language and communicate more effectively.”
Anyane-Yeboa makes a similar point. “It is critical that we diversify our provider workforce overall, and more specifically in gastroenterology,” she says. Not only could a more diverse provider network help reduce miscommunications, but it could also help address some race-based inequities in the ways people from minority groups are treated once they seek care. For example, researchers have found that when patients from minority groups present with iron deficiency anemia and diarrhea—two primary symptoms of IBD—they may be less likely than white patients to undergo the kind of comprehensive GI workup that could identify IBD. This could lead to a delay in diagnosis and harder-to-manage disease, she says.
Along with greater diversity among providers, experts say the wider adoption of multidisciplinary IBD care teams could solve a lot of problems. “Integrated care that involves an IBD gastroenterologist leading, but also IBD nurse practitioners or specialists, a dietitian, a psychologist or mental health counselor, and a social worker could help coordinate care,” says Juan-Nicolás Peña-Sánchez, an IBD researcher and associate professor of community health and epidemiology at the University of Saskatchewan. People living with IBD have to navigate a minefield of hardships, including the financial and psychological strain associated with their condition. Ensuring that people who can help them do this are not only available but also working in concert is an important advancement. While this is now commonplace in many major medical centers, people who don’t live in big cities may struggle to find this kind of care, he adds.
Making care affordable for everyone
The number of treatment options available to people with IBD has exploded in recent years. Some of the most effective new treatments, including biologics and small molecule immunosuppressants, have been gamechangers for many patients with hard-to-control or severe disease. But the best new therapies tend to come with hefty price tags, making them unaffordable for many patients.
“Some of these drugs cost $100,000 a year, and insurance or Medicare may only cover 80% of that,” Cross says. “That’s not going to be accessible for a lot of people.”
Even outside of the expense of new drug therapies, living with IBD can be financially costly. Many people with IBD have to miss work, frequently visit clinics or hospital emergency departments, or undergo GI surgery—all of which increase the financial burden of the disease. The psychological toll of living with a gut disease can also add to its expense. One 2019 analysis led by the Crohn’s and Colitis Foundation found that living with IBD costs the average patient $23,000 per year, and even that figure was likely to be “a substantial underestimate,” the authors of the analysis concluded.
The problem of out-of-control medical expenses spans the entire U.S. health care system, and there are no simple fixes. However, improvements are possible. Broadening insurance and disability coverage to more people with IBD is one example. According to a 2020 study in Inflammatory Bowel Disease, many patients with IBD may be eligible for disability pay without realizing it, and patient advocates can help them access these and other resources. Also, relying more heavily on “biosimilars”—affordable drugs that mimic the effects of pricier treatments—could help bring costs down.
A lot of work to be done
The remedies mentioned here are a start, but a lot more must be done to help underserved patient groups within the IBD community.
“At the provider level we need to speak out when we see discrimination in action, understand and consciously counteract our own biases, engage in shared decision making with our patients, and ensure that we are providing competent and linguistically appropriate care for our patients,” Anyane-Yeboa says. “At the industry level and policy level we need more funding for research in health equity, diverse grant review committees, a concerted effort to build trust in minority communities, and enhanced efforts to recruit diverse populations in clinical trials.”
“These are just a few examples and early steps of things that can be done to achieve equity in IBD,” she adds. “It’s not just the job of some of us to address inequities in IBD, but rather the responsibility of all of us.”