Gut instincts

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This article was published 28/01/2019 (1523 days ago), so information in it may no longer be current.

When it comes to making big decisions in her life, Darrah Horobetz often listens to her gut.

It’s not that the 24-year-old restaurant manager puts a lot of stock in her intuition. Rather, any choice she makes these days is literally based on visceral considerations.

“It’s not something I let pull me down and stop me from doing what I want to do,” says Horobetz, who as well as being president of the Manitoba chapter of Crohn’s and Colitis Canada, chairs its local awareness and fundraising campaign, the Gutsy Walk.

“I have six million different ideas in my head that I want to do with my life, but whenever I nail something down — like going to school away or travelling — I have to think about what happens if I get sick or whether I can get travel insurance.”

Thanks to advances in treatment, patients with inflammatory bowel disease (IBD), such as Horobetz, can still lead a relatively normal life.

The effect of Crohn’s isn’t easy to ignore, though

“I have symptoms every day,” says Horobetz, adding she takes Humira, a costly medication that treats a variety of autoimmune diseases, including rheumatoid arthritis.

Like the other 270,000-plus Canadians who have IBD, the effects of the disease — even when under control — go beyond pain and diarrhea.

As a recent report found, these diseases of the digestive tract are lifelong afflictions that don’t just take a physical toll on the afflicted. There are economic and social costs, too.

“This is very different from other chronic diseases like heart, lung and kidney diseases, which generally affect people later in their lives,” says Dr. Laura Targownik, a gastroenterologist at Health Sciences Centre. With IBD, individuals are often diagnosed in adolescence and early adulthood.

“So it affects them during their prime years of productivity,” she adds. “These are the years people are going to school, building their careers and starting their families.”

A professor at the University of Manitoba, Targownik is a co-author of the recent study titled 2018 Impact of Inflammatory Bowel Disease in Canada.

The most comprehensive national survey of its kind on IBD, it looked beyond the effect on the health of Canadians who have the disease, including delineating the rising cost of medications, particularly for the newest and most effective. Drug costs are burdensome for individuals such as Horobetz, whose medication costs more than $3,200 every two months, though the Manitoba pharmacare program covers all but $925 annually.

“It’s still not easy because I have to come up with the deductible all at once,” adds Horobetz, who has no additional medical insurance coverage.

Generally, individuals with IBD have higher health-care costs than healthy Canadians, the study also notes.

Those expenses increase with age. Medications and other health-care needs for seniors with IBD cost about 80 per cent more than those without the illness.

As Targownik points out, individuals from age 65 to 79 who have IBD often require more visits to the doctor, more medication and are more likely to be hospitalized.

Those costs are rising because more people in Canada are diagnosed with IBD every year. In little more than a decade, the study predicts the number of people with IBD could rise by almost 50 per cent.

One of the report’s other authors, Calgary gastroenterologist Dr. Gilaad Kaplan, says about 0.7 per cent of the population has ulcerative colitis or Crohn’s disease.

“As we keep adding new cases of IBD, our forecasting models show its prevalence rising to 1 per cent of the population by 2030 — that’s roughly 400,000 Canadians.”

The increase doesn’t just mean more people will be battling the chronic, sometimes debilitating disease.

“It is also going to be a huge stressor to our health-care system,” he says. “Even today we’re struggling to care for our patients.”

In part, the rising number is the result of better care. People with the illness who might have faced shortened life expectancy decades ago can now expect to live as long as anyone else.

This means more Canadians live with disease as new cases are diagnosed.

“And as they age, they’re not only dealing with longer duration of disease, but they’re starting to develop illnesses related to aging,” Kaplan says.

“That can make caring for people much more difficult” especially because IBD medications work by suppressing the immune system, leaving individuals more susceptible to infection.

IBD patients take medication for life. While the latest treatments are more effective and have fewer side-effects, they come with higher costs. Convincing the powers that be to cover them can be challenging, Targownik says.

“Right now, if you want to start a patient on some the newer drugs, you generally have to ask for permission from the government or from a private insurer first,” she says.

“That can prevent the timely use of medications in patients who need them the most.”

The costs associated with the illness go beyond drugs and other health care.

“If you’re a young adult and unable to complete your degree because you get sick, that not only affects your education, but potentially the next 40 years of earnings,” she says. “There is a multiplier effect.”

Having just finished her undergraduate degree, Horobetz is optimistic about her future. Yet she harbours no illusions about the challenges ahead.

“It’s a take-it-one-day-at-a-time kind of thing,” says Horobetz, who was diagnosed at age 13.

Then again, she’s not about to let the disease stop her from pursuing her goals.

“I decided years ago that Crohn’s may be part of who I am, but that doesn’t mean it defines who I am.”

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