What is the Canadian healthcare system like for NMOSD patients?

“It’s like heaven and hell at the same time.” That’s my response whenever I meet another neuromyelitis optica spectrum disorder (NMOSD) patient who asks me about our Canadian healthcare system.

Don’t get me wrong: I’m an incredibly proud Canadian. There are wonderful aspects to our “Great North,” including our poutine, accents, ability to stay a (mostly) unified country and do the right thing, and even our socialist healthcare system. I know I’ll never have to decide between treating a major NMOSD attack or losing my home. I don’t deal with the threat of having a huge hospital bill suddenly slapped across my face at my most vulnerable moment.

But in our plans, medical need can become subjective — and there’s nothing fair about that.

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In Canada, the federal government has decided what basic healthcare needs will be covered. In an emergency, for instance, your life will be saved, even if you’re a visitor. If you Americans are ever bleeding out and can cross the border quickly, you’ll save hundreds of thousands of dollars.

Yet each province then decides what they’ll contribute toward our healthcare. Each province decides what prescription medication they’ll cover and which ones they won’t. When a drug can be applied to various ailments, each province applies restrictions on it; even if the medication is covered, it might not be for your condition.

If you’re fortunate enough, like me, you supplement what our government covers with private insurance, which companies usually make available if you’re a full-time employee. My husband has a decent family benefits plan he pays into through a deduction from every paycheck. Companies can decide if the organization will fully cover their employee plan or if workers must pay a deductible for every service.

My biggest gripe against every benefits plan I’ve ever seen is that their coverage for mental health support is topped off by a maximum allowed cost; most plans cap psychology at $500/year, which usually covers about one and a half visits. That’s not enough time to deal with any underlying challenge.

These supplemental benefits plans also have a say in treatment. They’ll always insist on the generic brand of medication unless your doctor specifies that you need the name brand. While the composition of generics is close to that of brand names, they aren’t always exact. I’m one of those patients who is sensitive to medication, so the slight difference in drug composition can be enough to cause havoc with my system.

The reality of the Canadian healthcare system is this: Lawmakers, insurance companies, and company CEOs are not physicians. Instead of listening to the recommendations of clinicians, our healthcare system tends to focus on costs purely driven by supply and demand.

For NMOSD patients like me, that means that I might not have access to life-saving medication. If it weren’t for Roche’s patient program COMPASS, which sponsors my coverage, I wouldn’t be on Enspryng (satralizumab-mwge).

In sum, what’s happened in Canada is a tiered healthcare system, with some patients having work-sponsored private insurance coverage and others relying purely on our shared healthcare system. Not all patients are able to work or have a spouse who’s put them on their private benefits plan.

The Canadian healthcare system is a nice idea until you’re diagnosed with a rare autoimmune disease like mine, which has special requirements. That’s why we need advocates to speak up for patients already managing too much with their condition.

In Canada, we aren’t perfect, but as a proud Canadian and a patient advocate, I’m still hoping (and asking) for change. And because other Canadians continue to listen, I have hope that change is possible.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).