Rare Disease Drug Developer Group Blasts New Canadian Price Controls

Rare Daily Staff

Canadian Forum for Rare Disease Innovators (RAREi), an informal network of global biopharmaceutical companies focused on rare disease health policy in Canada, blasted new price controls from the Canadian Patented Medicine Prices Review Board saying rare disease patients will be worse off because of them.

Last week the review board, Canada’s drug price watchdog, released the final version of guidelines, the culmination of five years of work. The guidelines are intended to strengthen and modernize the pricing framework for patented medicines in Canada.

The new guidelines, which take effect January 1, provide what the board called a “risk-based” approach to regulating ceiling prices for patented pharmaceuticals by focusing on products that “pose a greater risk of excessive pricing because of their high cost or market size.”

“These changes run directly counter to the federal government throne speech commitment to pursue a national rare disease strategy,” said Bob McLay, chair of the RAREi. “They have a disproportionate impact on the most vulnerable people in society.”

The organization said that the PMPRB’s new pricing regime relies on new economic factors that disadvantage treatments designed for small patient populations, who often have life threatening illnesses. New regulated price reductions are uncertain and unsustainable for innovators, who already face challenges bringing new rare disease treatments to Canada.

“Developing treatments for rare disorders is already an extremely risky and costly endeavor and these price controls create a massive barrier to entry in Canada,” said McLay.

RAREi calls on the federal government to revisit its new price controls and to arrive at a long-term, certain and sustainable approach for price regulation in Canada. There is a way to achieve the government’s objectives without undermining a vital and vibrant industry sector that is committed to meeting the needs of rare disease patients in Canada.

Photo: Bob McLay, chair of the RAREi