Canada has one of the highest incidence rates of inflammatory bowel disease in the world.
“We don’t know why, but Canada is one of the hotspots,” said Dr Mark Silverberg, gastroenterologist at Mount Sinai Hospital and the University of Toronto, during a webinar hosted by Benefits Canada and sponsored by Takeda Canada in November.
IBD is a lifelong chronic disease with no cure. The onset is typically age 16 to 30 and can cause intestinal inflammation, bleeding ulcers, anemia, weight loss and increased cancer risk. “If not treated adequately, it’s progressive and causes significant complications in a large percentage of patients,” said Silverberg.
IBD is an umbrella term for Crohn’s disease and ulcerative colitis. With Crohn’s disease, inflammation can occur in any portion of the gastrointestinal tract from the mouth to anus and can cause fistulas to develop, which can “connect organs that shouldn’t be connected — small bowel stuck to large bowel, small bowel stuck to the bladder or to the skin,” he said, noting this can make people quite ill and affect nutritional absorption.
Ulcerative colitis primarily affects the large intestine and can be characterized by 15 to 20 urgent and bloody bowel movements per day. Some patients may have incontinence and have accidents before they can get to a toilet, which can, not surprisingly, lead to significant issues with work performance and mental health.
Indeed, IBD is associated with a high workplace absenteeism rate and significantly reduced productivity, which are estimated to represent losses of more than a billion dollars in Canada.
Patients can have an aggressive disease course with frequent relapses and, conversely, some patients’ remissions can last much longer. IBD can be unpredictable, said Silverberg. “Unfortunately, we have very poor understanding of what leads to these flares and that triggers that lead to sudden recurrence after periods of remission.”
Silverberg has seen patients in his practice that started on early biologic therapy who have remained in remission, whereas other patients must cycle through multiple therapies until they find one that’s effective for them. Unfortunately, “we have very little idea why those types of things happen,” he said.
IBD is complex and very difficult for experts to get a handle on. It’s heterogeneous and many pathways lead to intestinal inflammation. Due to the excellent research that’s gone on in this field, according to Silverberg, there are better therapies to control the disease. “Each of these therapies is quite unique and target a specific area of the inflammatory cascade.”
Biologics have been revolutionary for people with IBD, he said, referencing a study that showed treatment with biologics leads to a significant reduction in the rate of hospitalization and surgeries.
However, there’s no one-size-fits-all way to treat IBD patients. Each medication works very differently, said Silverberg, noting it’s a trial-and-error process. “And we don’t have a good way to know which drug to give to a particular patient. “
Anti tumor necrosis factor biologic drugs are extremely effective, he added, however they’re immunogenic, where the body sees them as foreign proteins and patients can develop antibodies that lead to loss of response to the medication. He reported that about a third to half of patients loose response to these drugs in the first year alone.
Some newer drugs are much less immunogenic, just as effective and safer, noted Silverberg, which is why they’re being sequenced more as a first line option. “If we can get a patient onto these drugs earlier in the course of the disease, they are generally more tolerable, which allows them to continue to take the drug and stay well longer.”
Silverberg recommended IBD patients have access to a range of medications because each works differently. He also suggested approval processes are optimized to allow patients to access treatment quickly, which can lead to improved outcomes.
When payers require patients to try treatments in a certain sequence or use only preferred drugs, months may go by where patients are on less effective therapies with greater side-effects, he said. And in the end, they may need to switch therapies anyway with negative repercussions in lost time.
Silverberg expressed concern that those who set coverage criteria may have very little experience and knowledge around the suffering of IBD patients and base their decisions on cost alone. “That’s just not an acceptable way to manage Crohn’s and colitis. If you don’t get it right at the beginning, these patients may suffer for the rest of their life.”
Plan sponsors can accommodate members with IBD by ensuring they have adequate toilet access, whether it be moving them close to a bathroom or allowing them to easily leave their work area to get to one. They can also allow modified work hours or flexibility for time off for medical appointments and consider adapting roles that can be challenging, such as being on the road or shift work.