No fixes yet for costly rare disease drug program, one year after David Eby called for changes
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.
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.
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.
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.
She said since the B.C. government’s reversal last year there have been other parents trying to get funding for their children.
“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.
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.
- Exclusive: Leaked report shows B.C. review four years ago urged changes to expensive rare-disease drug system
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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.
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.
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.
But few of the recommendations from that review had been implemented, according to those familiar with the report.
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.
“Even saying (the current review) is going to be done this year is pretty cold comfort,” said Day, the MLA for Courtenay-Comox on Vancouver Island.
He said his office had seen at least 15 cases involving expensive drugs since the controversy, including concerns over drugs that are in the approval process federally, or people who are on drugs now as part of a test and they’ve been discontinued.
Day noted it’s a huge issue for the province because of the increasing rate of drug development.
The Health Ministry had said earlier that the “majority” of the 2021 report’s recommendations have been implemented or “are part of ongoing work.”
However, officials pointed to only two that have been completed out of more than 300 recommendations: an expensive-drug-for-rare-disease web page it said supports transparency; and the establishment of an appeal process.
Joel Lexchin, a professor emeritus at York University with an expertise in pharmaceutical policy, said Wednesday any policy B.C. comes up with has to be evidence-based, including in how they are going to determine the therapeutic value of these drugs, and how they are going to determine who qualifies for public funding for these drugs.
“Not all people with an orphan (rare) condition will necessarily qualify for therapeutically important drugs,” noted Lexchin, who was also an emergency physician and wrote the 2016 book Private Profits versus Public Policy: The Pharmaceutical Industry and the Canadian State.
Lexchin said that decisions about both the therapeutic value of expensive drugs for rare diseases and who qualifies for public funding need to be made by people such as clinicians, patients and others who are independent of both the government and the pharmaceutical industry.
The B.C. government has said its internal review is exploring ways to improve the process for expensive drugs for rare diseases so that it works better for everyone involved — patients, families, experts, advisers and decision-makers.
The ministry said its goal is to have a system that is more transparent and responsive, where patients and families feel supported and understand the process, and where committee members have the tools and resources they need.
Provincial officials have said they also recognize the clear need to strengthen public understanding of how this process for expensive drugs for rare diseases works.
When the B.C. government reversed course and reinstated treatment for the 10-year-old girl, 10 members of the 58-member provincial advisory committee quit. None of those has returned and they haven’t been replaced, according to the province.
The impacted subcommittees and head committee have enough members to constitute a quorum, and in the interim, the drug approval process has continued as before, said ministry officials.
Postmedia’s reporting had revealed that almost all of the U.S. research experts the B.C. government leaned on to make a decision to reinstate a $800,000-a-year drug treatment for a 10-year-girl have, or had, relationships with the pharmaceutical company that manufactures the drug or foundations that advocate for treatment.
