What does one do when the federal government uses a government commissioned report (a.k.a. the Dodge Report by Dr. David Dodge and Dr. Ake Blomqvist) to justify its proposed PMPRB regulatory changes BUT refuses to make the report publicly available. Importantly, what does one do when this secret report is misrepresented?
CORD feels compelled to post the full report so that our entire community can review it for themselves. Although the government is heavily relying on this report as a reason to move forward on the reform, it never publicly released the report, which shows again the total lack of transparency that has plagued the entire consultation process to date.
While the government insists that this report supports the reform, this is a simplistic assessment solely guided by its desire to move forward and finalize regulations that will simply block patient access to medicines. What the government conveniently fails to mention time and time again is that the report raises several concerns with the reform, including the following major problems:
• There has been a lack of meaningful stakeholder engagement
• The government’s the Cost-Benefit Analysis needs to be re-done
• Economic factors have not been used by regulators to determine maximum prices for the sale of all medicines in a jurisdiction – they have only been tied to reimbursement systems
• Most concerning of all, that Health Canada and the PMPRB have failed to consider the negative impacts of the reforms on patient access to needed medicines
The report shows there has been a lack of transparency and insufficient engagement and information shared with stakeholders on the draft regulations – a couple of excerpts are telling: “most of the quantitative estimates in the CBA were provided without much explanation of the methodology used. In order to make our assessment we have had to rely on a number of working documents, including decks and computer files, which were not originally made publicly available.”) and “going forward, an open and transparent consultation process in this respect could be very helpful in reducing stakeholder uncertainty.”
By publicly releasing the Dodge report, CORD wants patients to see for themselves how the government has cherry-picked what it wanted from the reform to justify ramming through a pre-determined solution. The government has ignored all the major failings flagged by the report, and there has been no open and transparent consultation process since the report was completed in 2018. The government is not even listening to its own hired experts on the need to be more transparent and meaningfully engage patients!
What matters is that patients are now more informed and engaged than ever, and we will not stand for this sham consultation.
We are asking once again for all patients and communities and people who care to visit and sign the letter at www.listentopatients.ca, calling on the federal government to refrain from finalizing the PMPRB regulations.
Sincerely,
Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare Disorders
151 Bloor Street West, Suite 600
Toronto, Ontario M5S 1S4
p: 416-969-7435
m: 647-801-5176
www.raredisorders.ca
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