B.C.’s Ministry of Health confirmed Friday that the drug coverage for a 10-year-old girl on Vancouver Island who has a rare disease will remain cut off.
The reaffirming of the Ministry’s decision comes after Health Minister Josie Osborne met with Charleigh Pollock’s parents and Batten disease patient advocates last week.
In June, the Ministry of Health explained that it was discontinuing its coverage of Brineura, one of the only treatment methods for Ceroid Lipofuscinosis Type 2 (CLN2), otherwise known as Batten disease. While it is not a life-saving drug, it aims to slow the progression of the disease.
At the time, Charleigh’s mother, Jori Fales, and Batten disease and family advocate Lori Brown shared that the government’s claims that Charleigh was no longer getting any benefit from taking Brineura were not true.
In an update to the ministry’s decision on Friday, Osborne explained that “all of the relevant evidence provided by the patient advocates was already considered by the EDRD expert committees in February 2025, when Charleigh’s physician appealed the decision to discontinue treatment and had the opportunity to provide additional information and meet with them to discuss the case.”
Fales and Brown had also stated that the Ministry’s decision was based on outdated information that did not consider research from the drug manufacturer and two disease experts. They also shared that the scoring system to determine a patient’s suitability for drug treatment is outdated.
“The Ministry can confirm that the CDA reviewed and evaluated eight separate publications by these two experts. The Ministry also confirms that Biomarin Pharmaceutical, the manufacturer of Brineura, also submitted detailed information to the CDA, including unpublished studies, clinician statements, and materials from these same experts,” she added.
“The EDRD expert committees have not revised their recommendation to discontinue coverage given that there is no clinical evidence it would provide further benefits for Charleigh,” Osborne stated.
According to the Ministry, the United Kingdom also announced its intention to discontinue coverage for Brineura for Batten disease patients, due to what it says is “the limited evidence for its long-term effectiveness.”
“B.C.’s EDRD expert committees are often faced with the difficult responsibility of denying or ending drug coverage for patients with other rare and heartbreaking conditions—decisions made for the same clinical reasons as in Charleigh’s case. Importantly, cost is not a factor considered in these patient-level decisions. All provinces, including British Columbia, rely on clinical criteria recommended by Canada’s Drug Agency, following its rigorous, transparent evaluations of all available data and evidence,” Osborne said.
“This has been one of the most challenging issues that I have worked on since becoming Health Minister, and I take seriously my role to ensure that B.C. has drug review processes that are independent, evidence-based, and treat people equally.
“I know the outcome of this process is not the one anyone was hoping for, most particularly Charleigh’s family. Watching a child face daily challenges that most will never know is heartbreaking beyond words, and I believe that every British Columbian wishes for a world where no child should have to endure such suffering, and no parent should have to navigate such uncertainty.
“We must all continue to hold hope that ongoing advancements in rare disease research will one day prevent other children and families from experiencing the same suffering, and offer a better future through knowledge, treatment, and ultimately, cures,” Osborne said.
As for why B.C. could not decide to grant Charleigh’s coverage on compassionate grounds, or decide to use Charleigh’s diagnoses and experience for research purposes, Osborne told media on Friday that the EDRD is in the “extremely difficult position of making decisions like these regularly.”
“There are about 650 other people in British Columbia who receive drugs for very rare diseases, and the committee uses the same rigorous process, and it’s incredibly important that these processes be independent, that they be based in science, and that they be evidence based, but also important that everybody fairly,” Osborne said.
“It is vitally important that politicians not make these decisions, and guard the door for, really, sidestepping a process that is incredibly important to keep in place, in order to ensure that equity for all patients, and that people are treated fairly.
“That is my responsibility as minister. … I think about all of the options and opportunities before us, and I must come back to shepherding and stewarding this incredibly important process.”
B.C. decision disregards Charleigh’s life, her mother says
After receiving the news that the government has not changed its decision to cease coverage of Brineura, Charleigh’s mother took to social media to share her devastation.
Fales says she and the family were informed just shortly before the Ministry made its public announcement.
“I’m disgusted with the complete disregard for my child’s life,” she said. “We fought so hard.”
“Charleigh, I am so sorry.”
Courtenay-Comox MLA and Critic for Rural Health and Seniors Health Brennan Day says he “stands with Jori.”
“It is very disappointing that the province decided to not take the lead on this, and show some leadership,” he told 1130 NewsRadio.
Day says B.C. lags behind other jurisdictions on pharmaceutical research and then drug adoption into PharmaCare.
“We are the last, generally, in the entire country, to adopt drugs onto our coverage list, which doesn’t put us at the front of the pack, despite what the minister said in terms of new research and new pharma products that can lower the cost to health care,” he explained.
“Ultimately, in this case, I think the minister is a bit misguided, thinking that British Columbia is leading on this, we’re following, and I see that this decision shows that we’re not willing to show that leadership,” Day shared.
Day claims that the Canada Drug Agency’s final report, which he has reviewed, left it open to the province to step in and choose to continue Charleigh’s drug coverage.
“They’ve chosen not to, and unfortunately, they’re going to have to wear that,” he said.
“This is not a discussion about the cost of a medicine. It’s a discussion about a health-care system that’s compassionate enough to do the right thing anyway and make it work.
“This government spends $5 million by breakfast time on communications experts and spin doctors across the ministries. If the money was wanted, they could find it. They’ve decided not to, in this case, and I think it’s going to be a decision that haunts them for the next several years.”
During Friday’s update, Osborne confirmed that Charleigh’s family may acquire Brineura privately, and pay for the drug — estimated to cost $844,000 per year — themselves.
“Fundraising is going to be a big part of this,” Day explained. “It’s unfortunate that it has come this. In a public health-care system like ours, you shouldn’t have to go bankrupt accessing health care.”
“In this case, it’s going to take a community effort to continue this treatment. And that’s extremely disappointing.”
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With files from Srushti Gangdev.