Health sa国际传媒 has released a paper called Building A National Strategy for Drugs for Rare Diseases. It is allegedly based on 鈥渨hat we heard from Canadians.鈥�
It is, in fact, nothing of the kind. It is a summary of virtual townhall 颅meetings, online questionnaires and written 颅submissions, over-weighted with 颅family 颅representatives, non-profit 颅organizations, disease groups and stakeholders 颅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).
鈥淥ver 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 sa国际传媒 cost more than $200,000 per year; in 2017 it was 55 per cent, in 2018, 82 per cent.鈥�
So yes, Houston, we have a problem.
But note, it is Health sa国际传媒 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 颅leading question: 鈥淲hy do we need a strategy on high-cost drugs for rare diseases?鈥� Note that an affirmative answer is compelled. This cake is already baked.
Then comes a multi-choice question: 鈥淲hich of the [following] options, or 颅combination of options, would be the most effective for improving access and 颅improving consistency?
鈥淎 single framework for decision-making on high-cost drugs.
鈥淎 transparent co-ordinating body.
鈥淧atient and clinician engagement.
鈥淐o-ordinated support for research on rare diseases in sa国际传媒.鈥�
If I may quote Oscar Wilde out of context: 鈥淥ne must have a heart of stone to read [these options] without laughing.鈥�
Who could possibly disagree with any of them? But that, of course, is the intent of this exercise in flummery.
We鈥檙e then treated to a summary of what the various respondents supposedly told Health sa国际传媒. Eight of them are quoted in the paper, six of whom are patients or 颅advocacy groups. Guess which side they鈥檙e on.
Nowhere are we told what the people who will actually pay for this 鈥� 颅taxpayers, 颅business groups, provincial finance 颅ministries 鈥� had to say.
And the conclusion? 鈥淧eople 颅overwhelmingly felt that 鈥� a national approach was the most important element for a strategy and should be guided by key principles and values such as patient-颅centredness, transparency, accountability, and flexibility.鈥�
I鈥檓 sure they did, given they were offered no alternatives.
And affordability? The key obstacle to a 鈥渘ational strategy鈥� is that there are vast 颅differences in what the various provinces can afford.
In particular, none of the Atlantic 颅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 颅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鈥檛 afford, in advance of an expected election nobody wants.
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