This article originally appeared in the Financial Post. Below is an excerpt from the article.
By Nigel Rawson, September 4, 2025
This summer British Columbians debated whether their provincial government should continue to pay for an expensive medicine for 10-year-old Charleigh Pollock, who has a rare disorder called Batten disease. Though much has been written about the high sticker price of the drug Charleigh needs, less has been said about the lower prices paid by government drug plans or the possible savings to the health-care system if successful treatment means Charleigh needs less care.
Batten disease is in fact a group of inherited neurodegenerative disorders, mostly arising in childhood, triggered by genes that cause cells to collect waste instead of getting rid of it. This leads to childhood dementia, epileptic seizures, motor function decline and vision loss, ending in premature death. There is no cure but an enzyme replacement therapy, known as Brineura, can slow the disease’s progression in the version Charleigh has.
Canada’s Drug Agency (CDA) assessed the value of Brineura for government drug plans using data from pre-marketing experimental studies and the drug’s list price, which is $844,000 per year. CDA had concerns about Brineura’s efficacy and safety — it’s administered directly into the brain through an implanted reservoir — but recommended Brineura be “reimbursed with clinical criteria and/or conditions,” including, as is normal, criteria for stopping treatment.
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Nigel Rawson is a senior fellow with the Macdonald-Laurier Institute.
