Health Canada has released a paper called Building A National Strategy for Drugs for Rare Diseases. It is allegedly based on “what we heard from Canadians.”
It is, in fact, nothing of the kind. It is a summary of virtual townhall meetings, online questionnaires and written submissions, over-weighted with family representatives, non-profit organizations, disease groups and stakeholders representing the pharmaceutical industry.
The paper begins with what should be a sobering fact (though sobriety has nothing to do with this piece of political chicanery).
“Over the past five years, the number of high-cost drugs on the market that cost more than $200,000 per year has been increasing: In 2016, 36 per cent of high-cost drugs approved in Canada cost more than $200,000 per year; in 2017 it was 55 per cent, in 2018, 82 per cent.”
So yes, Houston, we have a problem.
But note, it is Health Canada that licensed these drugs, often on the flimsiest proof of efficacy. This is a clear case of first creating a problem, then setting out to solve it.
When you go through the paper line by line, it becomes apparent this is nothing but a push poll.
First, participants were asked the leading question: “Why do we need a strategy on high-cost drugs for rare diseases?” Note that an affirmative answer is compelled. This cake is already baked.
Then comes a multi-choice question: “Which of the [following] options, or combination of options, would be the most effective for improving access and improving consistency?
“A single framework for decision-making on high-cost drugs.
“A transparent co-ordinating body.
“Patient and clinician engagement.
“Co-ordinated support for research on rare diseases in Canada.”
If I may quote Oscar Wilde out of context: “One must have a heart of stone to read [these options] without laughing.”
Who could possibly disagree with any of them? But that, of course, is the intent of this exercise in flummery.
We’re then treated to a summary of what the various respondents supposedly told Health Canada. Eight of them are quoted in the paper, six of whom are patients or advocacy groups. Guess which side they’re on.
Nowhere are we told what the people who will actually pay for this — taxpayers, business groups, provincial finance ministries — had to say.
And the conclusion? “People overwhelmingly felt that … a national approach was the most important element for a strategy and should be guided by key principles and values such as patient-centredness, transparency, accountability, and flexibility.”
I’m sure they did, given they were offered no alternatives.
And affordability? The key obstacle to a “national strategy” is that there are vast differences in what the various provinces can afford.
In particular, none of the Atlantic provinces possess the revenue base required to keep up with the rest of the country.
There is a further hurdle that goes unmentioned. Are the provinces on side?
For they are the delivery agencies that will have to carry the burden if a national strategy goes ahead. Ottawa has no constitutional authority to override or refocus provincial drug plans. But on this essential matter, not a word.
What this entire exercise amounts to is an effort by the federal government to gin up public support for a scheme we can’t afford, in advance of an expected election nobody wants.
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