FOR IMMEDIATE RELEASE
ST. ALBERT, AB (May 28, 2020) – Conservative Member of Parliament Michael Cooper (St. Albert-Edmonton) today joins with Alberta Cystic Fibrosis advocates, to call on Health Minister Patty Hajdu to delay implementation of changes to the Patented Medicines Prices Review Board (PMPRB) regulations that puts the lives of Canadians with rare diseases at risk. The changes will significantly reduce access to new, life-saving therapies, especially in the case of rare disorders. Cooper is joined in his call by the Alberta and Northwest Territories Volunteer Advocate for Cystic Fibrosis Canada, Sandy Stevens, of Edmonton who is the mother of a daughter with Cystic Fibrosis, and Regional Volunteer Advocate Sharon Stepaniuk of St. Albert, who is mother of two young children with Cystic Fibrosis. The regulatory changes effective July 1, 2020 are purportedly aimed at reducing drug costs.
MP Cooper made the following statement:
“The regulatory changes to the PMPRB will profoundly impact the accessibility of new medicines for Canadian patients. The imposition of price reductions as high as 90 percent will make Canada an OECD outlier, and a significantly less attractive market to launch new therapies. Canadians with rare diseases such as cystic fibrosis will be the most negatively affected. For example, these changes have contributed to delaying and potentially making the game-changing drug Trikafta, which can treat up to 90 percent of Cystic Fibrosis patients, unavailable in Canada. The Minister has been repeatedly warned by the rare disease community about the devastating impact these changes will have on access to life-saving therapies. It is time that the Minister listened and put a halt to these ill-considered changes.”
Advocate Sandy Stevens made the following statement:
“Changes to the PMPRB coming into force on July 1st will be disastrous for rare diseases such as Cystic Fibrosis. This concerns me as it will prevent not only my daughter from receiving the life-saving medication Trikafta but the 4,000 other Canadians living with Cystic Fibrosis as well. Cystic Fibrosis patients may be among the first to feel the impact of these proposed changes, but they won’t be the last. Instead of building roadblocks we need a system that works. The philosophy of seeking the cheapest option has to change. It doesn’t work with rare diseases. It is frustrating to see medication that Canadian patients desperately need being used in the U.S. with amazing results while we just watch. Canadians expect better and we deserve better.”
Advocate Sharon Stepaniuk made the following statement:
“Canada already has a very onerous and lengthy process for drugs to get to market and for patients to be able to access them. Adding more steps and regulations to this process will make Canada’s already small market even less desirable and I fear we will not be able to access the most effective medications for my children to treat their progressive, fatal disease.”