Adrian Bulfon was diagnosed with inflammatory bowel disease when he was 16. Since then, he’s figured out where he can go, what he can do and what he can eat, though now he eats pretty much whatever he wants, knowing that most foods will bother him. And just as the disease was a part of him, it was closely identified with the developed world of which Canada, Bulfon’s country, is a part. But not anymore.
IBD, a general term for diseases causing chronic inflammation of the digestive tract, has largely been isolated to North America and Western Europe since it was first formally discovered in 1932. Though the severity of Bulfon’s case is rare, IBD affects about a half-percent of Canada’s population. The rate in the U.S. is even higher; 1.3 percent of adults were diagnosed with IBD in 2015, according to the Centers for Disease Control and Prevention. But now, as countries across Asia, South America and Africa industrialize and become more urban, they are also starting to see IBD emerge as an increasingly common chronic and burdensome disease.
We’re now starting to see this disease in countries where a generation ago it was almost unheard of.
Gilaad Kaplan, researcher
These countries are now grappling with the growing cost that IBD has on health systems and societies. China, for example, has seen a significant increase in hospitalization costs for IBD treatment over the past decade, according to a 2013 article published in the journal Gastroenterology Research and Practice. Another study found that IBD frequently “causes disability for prolonged periods and contributes to early retirement” in Brazil. The correlation between what researchers call “Westernization” and the emergence of IBD is clear, but no one knows what specifically causes it.
“We’re now starting to see this disease in countries where a generation ago it was almost unheard of,” says Gilaad Kaplan, a gastroenterologist and epidemiologist at the University of Calgary, who co-authored a paper reviewing existing research on ulcerative colitis and Crohn’s disease, the two specific diagnoses within the IBD umbrella, to understand how IBD cases were changing. “And those countries are going to have similar challenges as North America.”
To tackle these challenges, developing countries will have to build their medical infrastructure and increase recognition among the medical community to diagnose, monitor and treat IBD cases, says Kaplan. However, this could be difficult in areas where health care access is limited, he cautions. The global gastroenterological community also can help prepare doctors and patients to deal with the complexities that come with IBD, says Corey Siegel, director of the Inflammatory Bowel Disease Center at the Dartmouth-Hitchcock Medical Center.
“We need to focus on both professional education for how to give effective and efficient care, but also patient education so that patients can be engaged and empowered to be part of their care, ask the right questions and know what to expect,” says Siegel.
There are some clues available as to why IBD is becoming more common in certain places, says Kaplan. In addition to genetic predisposition, early childhood exposures seem particularly important. For example, someone is less likely to eventually develop IBD if they were breast-fed, not exposed to antibiotics early on or grew up in a less-sterile environment, such as on a farm. So, as countries industrialize, residents are exposed to different microbes, which could influence a person’s risk of developing IBD. “We’ll probably see this disease develop based on environmental factors linked to Westernized societies that probably affect … the intestinal microbiome,” he says.
But the burden the disease thrusts on individuals and societies is far clearer than the environmental triggers that make some more vulnerable than others. The extent of IBD’s potential economic impact can be seen in the resources Western countries currently dedicate to its treatment. The disease costs Canada an estimated $ 2.21 billion annually, split between expensive treatments and social costs such as lost work hours. Biologics, which are drugs that are used to put those with IBD into remission, can cost $ 30,000 to $ 40,000 a year per person, Kaplan says. Across the Atlantic, Europe spends between $ 5.36 billion and $ 6.52 billion every year on IBD health care.
And for patients like Bulfon, the disease is fundamentally life-altering. Because of his IBD, Bulfon gave up sports and much of his social life. He has trouble going shopping and driving two hours to his parents’ house. “It’s been eight years since I lived any kind of semblance of a normal life,” says Bulfon. “When you only have a few seconds up to a minute to get to a washroom before becoming incontinent, [limited or no access to usable public restrooms] is a huge barrier to being able to participate in society,” he says.
Because the price tag that comes with IBD is so steep, and because a cure seems so far away, Kaplan says he believes prevention is what researchers should prioritize. “What are the fundamental causes of the disease? Knowing these can help create population-based recommendations for how to prevent or lower the risk of getting IBD,” he says.
Bulfon, meanwhile, is in his third year of medical school. He’s studying to be a gastroenterologist, and he helps run Facebook support groups for people with IBD.
“Beyond having the disease and wanting it cured so I don’t have to be stuck in my home all day every day, having this also lets me recognize that there are people who have suffered a lot more than I have,” says Bulfon. “We’re now recognizing how much of a burden on society IBD is.”