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vancouver—for the one in 12 canadians living with a rare disease, there are often few medication options, sold at astronomical costs by drug providers. if patients are lucky enough to get funding, the high cost of these “orphan drugs” become a burden on canada’s public health-care system and insurance providers.
but is there a better way to get these medications to patients? ubc-based journalists, alongside medical policy researchers, have been exploring that question and are now sharing those findings with the public.
peter klein, head of the global reporting centre, has been grappling with the issue for the past six years. he is one of the leads of million dollar med$, a journalism project looking into the issue of the high costs of orphan drugs and the often unregulated policies surrounding their funding and development.
“in a country that’s a pioneer of universal health care, and it’s such a signature part of our identity in canada, if you have a rare disease you might get coverage and in another province you wouldn’t,” klein said.
he hopes to start a conversation with canadians about the issue. the global reporting centre, in partnership with the cihr new emerging team for rare diseases, hosted a town hall tuesday night featuring patients, researchers and doctors who will weigh in on the topic.
klein said that funding for these expensive drugs, which can reach into the millions, is life-saving but it can also be a burden on the health-care system. as a result, it’s critical to find equitable policies.
vancouver’s purcell family, featured in a short video documentary for million dollar med$, has felt those impacts keenly. trey purcell was two years old when he was diagnosed with hunter’s syndrome, and his medication — which costs around $3,000 per vial, needing five vials per week — is one of the most costly in the world.
his mother deb purcell said in an interview with starmetro that while she feels extremely lucky to have the medication funded by the province, it should be that way for everyone.
unless her son is eligible for gene replacement therapy, purcell said, trey will be on the medications for the rest of his life and needs the funding provided by the province to continue. without it, his condition will deteriorate and he will not live as long. she’s seen kids with hunter’s suffer this way when they go without medication.
but with the drugs, he’s playing sports and going to school.
“it’s not a typical life, but ... he’s got a good quality of life,” she said.
dr. larry lynd, principal investigator with the canadian institutes of health research’s team on rare diseases, said canada has no policies on how “orphan drugs” are funded or even defined.
“we don’t have canadian law or legislation that says what an orphan drug is,” said lynd, also a professor at ubc’s school of population and public health.
a common definition used in other countries is a disease with a prevalence of less than one in 2,000.
lynd said the need for such policies is becoming more urgent, as he has seen an increase in the number of expensive orphan drugs on the market.
“six to seven years ago there was a limited number of treatments, and it was much easier for government and public payers because the budget impacts were low,” he said. “but there’s been a significant number of new drugs receiving orphan drug designation ... that have price tags that are more than $250,000 per year for patients, or even $1 million.
he said the next steps are finding out which strategies for funding orphan drugs work best within the health-care system. with current discussions taking place around a national pharmacare strategy, there are new options, he said.
“i think there’s an opportunity for drugs for rare diseases to develop a centralized national strategy to get equitable access for patients,” he said.
but a key part of the project is sparking a conversation among canadians about what they value most — which he hoped to begin tuesday night.

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