TORONTO — Canada has one of the highest incidences of inflammatory bowel disease (IBD) in the world, afflicting an estimated 233,000 people, with 28 being diagnosed each day.
IBD, which is a range of conditions including Crohn’s disease and ulcerative colitis, develops when parts of the body’s immune system begins attacking the gut. Symptoms can include diarrhea, cramping, weight loss, ulcers and intestinal scarring. Those who are afflicted have a lowered life expectancy, an increased risk of colon cancer and will likely require surgery at least once in their lifetime.
Though the incidence of IBD in Canada is as common as Type 1 diabetes and epilepsy, and more common than multiple sclerosis and Parkinson’s disease, it remains a stigmatized disease that is relatively unknown and misunderstood. IBD costs in Canada are estimated to be $2.8 billion per year, and the quality of life of someone with IBD is low across all groups when compared to the general population.
To raise both awareness and funding, the Crohn’s and Colitis Foundation of Canada (CCFC) was launched in 1974 by a group of parents whose children were suffering from IBD. Since then, the CCFC has become a world leader in IBD research funding.
On Nov. 1, to kick off Crohn’s and Colitis Awareness Month, CCFC launched a report intended to raise awareness of IBD in Canada, and to lead to new research opportunities and improved quality of life for Canadians living with IBD.
At a panel discussion held at Toronto’s Mount Sinai Hospital on Nov. 1, Mount Sinai president and CEO, Joseph Mapa, said that “digestive health is one of the key programs at Mount Sinai, and we employ some of the most talented people in the world. I am proud that the CCFC allows us to be part of the discussion and solution to IBD, so we can continue our important work.”
Dr. Kevin Glasgow, CEO of the CCFC, discussed some of the findings of the report, as well as the goals of the CCFC. “In CCFC’s perfect world, people would already be cured,” he said. “We are getting closer, but we’re not there yet. Until that day comes, we have an obligation to improve quality of life by reducing the impact of living with IBD.”
Glasgow talked about some of the challenges that a person suffering from IBD faces, including general lack of awareness of the disease, late diagnoses, poor access to IBD specialists and clinics, and lack of insurance coverage for expensive yet critical medications.
“Employment issues are very common, with 21,000 people with IBD unable to work every year, and over 40 per cent of people taking short-term leaves,” he said. “Even those in remission suffer from fear and anxiety in anticipation of a future relapse.”
Panellist Ruth Scully, a volunteer with CCFC, has two children with IBD. “As a mother, it is so difficult to watch my kids in pain. I wish I could take it all away from them,” she said.
Her son requires more than $40,000 worth of medications per year to manage his disease. She worries that soon he will not be covered by the family insurance policy and that paying for the drugs will be a burden for him for the rest of his life.
“My strategy to cope with the IBD in my family is to do anything I can to help. I volunteer, raise money and speak to other parents whose children have been diagnosed,” she said. “It’s a common disease, but people aren’t talking about it.”
Each year, the Scully family participates in the CCFC’s Gutsy Walk, to raise money for IBD research. Her children have raised more than $100,000 in pledges since they began participating. “I am more committed than ever to improving my children’s future,” Scully said. “We need to find a cure for IBD, but in the meantime we need to help people live with it.”
Dr. Hillary Steinhart, the head of the division of gastroenterology at Mount Sinai, spoke about what it’s like as a physician to see the impact of IBD. “I’ve been in this field for 21 years, and while treatments and surgeries have changed, the impact of IBD is still the same,” he said.
“I am proud to be part of this centre of excellence, where we’ve been able to harness the energy and talent of some brilliant people into one place. Our clinicians see over 4,700 patients each year, many who come from outside of Toronto and Ontario to find the help they need to manage their complex disease.”
Though there is still no cure, clinicians at Mount Sinai are leading cutting-edge research studies to discover the causes and treatments of IBD. “We’re getting closer,” Steinhart said. “With every advance in research, we are that much closer to a breakthrough.”