In the fall of 2016, the Patented Medicine Prices Review Board (PMPRB) requested input from stakeholders and interested members of the public on the PMPRB Guidelines, to ensure they remain a relevant and effective tool for protecting consumers from high drug prices in a dynamic and evolving pharmaceutical market. In response, the Canadian Association of PNH Patients (PNHCA) provided a submission and it was included in the PMPRB Guidelines Modernization Discussion Paper, which is now available on the PMRPB website. PMPRB received 66 submissions representing more than 500 different organizations, including patient groups, provincial health authorities, academics, private insurers, patentees, health professionals, employers, unions, and advocacy groups.
As a next phase in this consultation process, Health Canada asked for input from stakeholders and interested members of the public on proposed amendments to the Patented Medicines Regulations, which work to regulate the prices of patented medicines in Canada to ensure the prices are not excessive. In response, PNHCA provided a submission and it can be read by clicking here.
PNHCA looks forward to continuing to participate in this process and bringing the rare disease patient voice to the discussion, with the ultimate objective of ensuring that all innovative treatments for PNH that are proven to be safe and effective are accessible to any Canadians who can benefit from them.