Skip to main content

Under the new government reforms, Patented Medicine Prices Review Board’s (PMPRB) will have the ability to consider the cost-effectiveness of medications.

Patrick Sison/The Canadian Press

Canada’s patented drug price regulator, set to gain new powers next year, may be “more forgiving” in setting price caps for drugs that treat rare diseases, the agency’s executive director told Reuters, as some advocates warned the country’s pricing reforms would hurt patients.

The Canadian government announced final regulations meant to cut drug spending on Friday. The reforms expand the Patented Medicine Prices Review Board’s (PMPRB) powers, and among other things give it the ability to consider the cost-effectiveness of medications.

Doug Clark, executive director of the PMPRB, noted that improving access to rare disease drugs was part of the most recent federal budget.

Story continues below advertisement

“We’ve signalled for some time that we’re going to be a bit more forgiving in the ceilings that we apply to these drugs, because we want to be consistent with the government’s broader commitment to trying to facilitate access,” he said in an interview on Friday, referring back to technical documents provided to some advisory committees.

While rare disease drugs face small markets by definition, high prices and policies that speed their approval have created a profitable niche for some drugmakers. That trend may accelerate with the introduction of gene therapies like Novartis’s new Zolgensma, which at $2.125-million for a one-time treatment is the world’s most expensive drug.

Clark’s assurance was little comfort to Durhane Wong-Rieger, president of the Canadian Organization for Rare Disorders (CORD), who fears lower price caps would stop drugmakers from selling treatments for rare conditions in Canada.

“The overall budget impact of these drugs, even if we brought them all in, would not even reach 1 per cent,” she said, referring to provincial drug programs that often cover the most expensive treatments. “Why are we disproportionately disadvantaging patients for very little net gain?”

PRICEY MARKET

Canada’s patented drug prices are among the highest in the world, and the federal government has said many countries with lower prices have similar or better access to drugs.

Much depends on how the PMPRB uses its new powers, which will be laid out in guidelines that are still being drafted. Clark did not go into much detail, citing that process.

The government’s regulatory impact assessment assumed the PMPRB would judge drugs against cost per quality-adjusted life year benchmarks of between $35,000 a year and $150,000 a year, with the high end for rare diseases. Final thresholds will likely be laid out in the guidelines.

Story continues below advertisement

“That’s not going to work,” Wong-Rieger said of the $150,000 benchmark. “It’s not enough.”

Under Clark, the PMPRB has formally challenged the price of two rare disease drugs: Alexion Pharmaceutical Inc’s Soliris and Horizon Therapeutics’ Procysbi.

Erin Little, whose daughter has a disease called cystinosis, runs a small cystinosis research foundation called Liv-A-Little. Procysbi is one treatment for cystinosis, and regulators have said it costs up to $325,000 per year in Canada.

Little is critical of groups like CORD, which receive funding from drugmakers and often take similar policy positions. On PMPRB reforms especially, patient groups have been closely aligned with drugmakers, like the industry lobby group Innovative Medicines Canada, arguing lower prices could delay drug launches.

Wong-Rieger said pharmaceutical company funding has no influence over her positions.

For her part, Little said PMPRB reforms look like a move in the right direction.

Story continues below advertisement

“I am somebody who believes that our pharmaceutical companies need to be questioned as to why their prices are so high,” she said. “The pharmaceutical companies are always 10 steps ahead of us, and they know what they can get away with, and that is the problem.”

Your time is valuable. Have the Top Business Headlines newsletter conveniently delivered to your inbox in the morning or evening. Sign up today.

Report an error
Due to technical reasons, we have temporarily removed commenting from our articles. We hope to have this fixed soon. Thank you for your patience. If you are looking to give feedback on our new site, please send it along to feedback@globeandmail.com. If you want to write a letter to the editor, please forward to letters@globeandmail.com.

Welcome to The Globe and Mail’s comment community. This is a space where subscribers can engage with each other and Globe staff. Non-subscribers can read and sort comments but will not be able to engage with them in any way. Click here to subscribe.

If you would like to write a letter to the editor, please forward it to letters@globeandmail.com. Readers can also interact with The Globe on Facebook and Twitter .

Welcome to The Globe and Mail’s comment community. This is a space where subscribers can engage with each other and Globe staff. Non-subscribers can read and sort comments but will not be able to engage with them in any way. Click here to subscribe.

If you would like to write a letter to the editor, please forward it to letters@globeandmail.com. Readers can also interact with The Globe on Facebook and Twitter .

Welcome to The Globe and Mail’s comment community. This is a space where subscribers can engage with each other and Globe staff.

We aim to create a safe and valuable space for discussion and debate. That means:

  • Treat others as you wish to be treated
  • Criticize ideas, not people
  • Stay on topic
  • Avoid the use of toxic and offensive language
  • Flag bad behaviour

Comments that violate our community guidelines will be removed.

Read our community guidelines here

Discussion loading ...

Cannabis pro newsletter