Does Canada’s universal health care system ensure that people suffering with rare diseases receive consistent care, regardless of the city or province that they live in?
There is a lack of portability of health coverage in Canada. A patient receiving a specific treatment in one province may not be entitled to that treatment if they move to another.
As with many of the big political questions, the debate always comes back to one thing: money.
A question of money
As with many of the big political questions, the debate always comes back to one thing: money—and how different provinces decide to spend their tax dollars. “Some provinces are willing to spend money on expensive drugs and others aren’t,” explained Dr. D Wayne Taylor, Associate Professor at McMaster University and Executive Director of the Cameron Institute. “For the provinces, it’s pure political will, or alternatively, lack thereof.”
Dr. Taylor believes that provincial governments have been given an easy way out when it comes to funding drugs for rare diseases.
“There’s an arbitrary figure that the people advising ministries of health have devised – saying that it’s in the public interest to only spend up to $50,000 a year to improve quality of life for one person,” he said. “But, usually the drugs for the rarest diseases cost more than that. It’s an arbitrary criterion, which governments use to say that they can’t fund treatment.”
Most rare diseases are genetic and debilitating, so ensuring that a patient gets the right drugs is truly a case of life and death. If a person with a rare disease is living in a province where drugs are not offered, and they can’t afford a private drug plan, they are likely to suffer pain, debilitation and eventually a premature death.
“Supposedly we have freedom of movement in this country, yet we don’t have universal health coverage in terms of drugs for life threatening rare diseases,” explained Dr. Taylor. “It’s not only inconsistent, although that’s a word that I would stress, it’s also not in keeping with the very foundations that our Medicare system was based on.”
Years after the Romanow commission and there is still no catastrophic drug program in Canada. Provinces work individually and, sometimes, on a case-by-case basis when treating rare diseases. Current methods are penalizing the very people in society who are in most need of care, sensitivity and a practical approach to their medical needs.
“Every province will pay for amoxicillin if you have a bacterial condition, but no one is going to go broke if they have to pay $10 for that,” said Dr. Taylor. “Yet certain provinces are not covering the lifesaving stuff, which is what Medicare is supposed to be all about.”
“There’s an arbitrary figure that the people advising ministries of health have devised – saying that it’s in the public interest to only spend up to $50,000 a year to improve quality of life for one person. But, usually the drugs for the rarest diseases cost more than that.”
Collaboration needed to make a change
The private insurance industry has taken a step in the right direction and set an example that the provinces should follow. All of the private insurers pool their risk for supplying drugs for rare diseases at a national level to ensure that they can continue to afford providing insurance.
“Why can’t the provinces and territories pool their risk and spread the cost across the country?” said Dr. Taylor. “The provinces meet twice a year to talk about health issues, so there’s nothing stopping them from having that conversation.”
There is a problem with the current system and it’s in dire need of change. A truly universal health system wouldn’t be witnessing such lack of portability, yet it’s an issue, it seems, that is dictated by provincial governments and provincial budgets.
“In terms of national health care, not a massive amount of money is needed: we’re talking millions from a budget of billions,” said Dr. Taylor. “With 12 percent of the population suffering with a rare disease it’s not a small problem, and it’s only going to grow.”
Dr. D. Wayne Taylor – Executive Director, The Cameron Institute