The premier called for a review and changes after his government came under heavy criticism for its handling of an expensive drug treatment of a 10-year-old girl from Vancouver Island who suffers from a rare neurodegenerative condition
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There have been no fixes to the process involved in funding and treating rare diseases with expensive drugs more than a year after B.C. Premier David Eby said it was obvious the system wasn’t working.
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In July 2025, Eby called for a review and changes after his government came under heavy criticism for its handling of an expensive drug treatment of a 10-year-old girl from Vancouver Island who suffers from a rare neurodegenerative condition called Batten disease for which there is no cure.
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Initially, the B.C. government backed the decision of an expert committee that recommended a more than $800,000-a-year treatment be discontinued for Charleigh Pollack. But under increasing public outcry, the government reversed course, citing experts in the U.S. who urged the province to continue funding the drug Brineura.
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Sunrise
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Sandra Sirrs, a rare disease physician at the University of B.C. and one of the 10 expert committee members who quit following the government’s reversal, said it’s disappointing the Eby government has failed to address the issue, but it’s not surprising given they listened to U.S. experts, none of whom had assessed the patient.
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Sirrs also noted the B.C. government had done nothing following a 2021 report that had already recommended changes to improve the expensive drugs for rare diseases system that included better transparency, clearer communication and stronger decision-making.
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She said since the B.C. government’s reversal last year there have been other parents trying to get funding for their children.
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“Patients will continue to litigate their case in the media as long as the government does not take any steps to clearly define how decisions will be made about funding high-cost therapies,” said Sirrs.
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In response to Postmedia questions, the B.C. Ministry of Health said it expected the review will be completed this year but did not provide a specific date.
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“Results of the review, including any changes, will be publicly released once the review is complete,” said the ministry in an email sent by public affairs officer Kelvin So.
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The B.C. Conservatives have raised questions this year in the B.C. Legislature on the length of time the review is taking, and called for the B.C. government to release the 2021 review.
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That review, which was never made public but was leaked last year to Postmedia, noted there was “urgency” to making changes because spending on expensive rare-disease drugs was expected to grow significantly, to an estimated $600 million annually by the end of the decade.
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But few of the recommendations from that review had been implemented, according to those familiar with the report.
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Brennan Day, the B.C. Conservatives critic for rural and senior’s health, said the province has not released the review as they had asked, denied a request to provide it under freedom of information, and has not provided a public status of the recommendations.
