New PMPRB guidelines can’t fix flaws in regulations that will stall new treatments for Canadian patients

TORONTO, October 23, 2020 – The Canadian Organization for Rare Disorders (CORD) is carefully reviewing the new changes to the guidelines of the Patented Medicine Prices Review Board (PMPRB) that were released today. However, we remain very concerned because the guidelines do not address the flaws in the new regulations themselves.

The test for whether these guidelines are good for patients, and particularly those with rare diseases, is whether and to what extent the regulations and guidelines inhibit companies from bringing new medicines to Canada. We haven’t seen much in the updated guidelines to alleviate that concern; however, this is perhaps a better question to be put to medicine developers.

One point of issue for rare disorders is the decision to cut by one-third the Pharmacoeconomic Value Threshold for Category IV drugs – from $150,000 per quality-adjusted life-year (QALY) to $100,000/QALY. This will capture a lot of rare disease medicines in this wide net and could hurt patients.

CORD remains concerned that Health Canada and the PMPRB have felt they need to relax their regulations to permit quick approval of and access to COVID-19 treatments and vaccines, but not do the same for rare diseases. This is a clear admission that the rules block speedy access to medicines. It’s good to speed it up for COVID-19 but what about all the other treatments that Canadians desperately need now and in the future?

About Canadian Organization for Rare Disorders (CORD)
CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. For more information, visit

CORD has been at the forefront in raising awareness regarding the PMPRB changes and the impact on patients and invite all Canadians to engage and learn more about this issue at and by following @fight_4_lives #FightForOurLives and #Canada4Rare


For further information:
Durhane Wong-Rieger, Canadian Organization for Rare Disorders
(647) 801-5176,

For interviews and media enquiries: Don Sancton, Senior Associate, 3Sixty Public Affairs
(514) 206-1191,