Drug body members quit, B.C. minister apologizes to family of girl with rare disease

VICTORIA — Four members of British Columbia’s Expensive Drugs for Rare Diseases Committee have resigned after the government went against its recommendation and reinstated medication funding for a 10-year-old girl.

The fallout from the handling of Charleigh Pollock’s case also saw Health Minister Josie Osborne apologize to the Vancouver Island girl’s family on Friday.

Pollock is the only person in B.C. with incurable Batten disease, and the treatment to reduce her debilitating symptoms costs about $1 million a year.

There was an uproar over the committee’s recommendation to halt funding and while the government initially maintained it would not interfere in the decision, on Thursday Osborne announced the reversal.

A Health Ministry statement confirmed the resignations on Friday but the ministry did not say whether the four were involved in the original decision to cut off funding. There are 50 members of the committee.

“We can’t share the names of those who resigned,” a ministry spokeswoman said in an email. “When experts join the committee, government commits to keeping their names confidential.”

While the ministry said it could not speculate whether the members resigned in protest over Osborne’s reversal, it said the resignations came after the minister’s decision.

Osborne apologized at a news conference on Friday, saying she also spoke with Pollock’s mother, Jori Fales, late Thursday to express the regret she felt.

“I apologized for the pain and the suffering that they’ve been through as part of this,” Osborne said.

Fales celebrated in a video posted on social media, saying the “nightmare is over,” adding she is “beyond grateful” to supporters who backed her cause to have the funding restored.

The province had cut off funding last month for the drug Brineura, citing the committee’s experts who said the medication was no longer helping slow the progress of the girl’s disease.

No cure exists for Batten disease, a rare neurodegenerative disorder that causes seizures, blindness and declining motor functions.

Osborne personally called Fales to tell her that government would restore funding, citing a separate group of U.S.-based experts, who said in a letter this week that they “strongly” opposed the funding discontinuation, calling for a review of the criteria that had guided that decision.

Osborne said Charleigh should not suffer because of what she said was “significant disagreement” among the groups of experts.

On July 11, another committee of experts endorsed the discontinuation decision, prompting Fales to post a video on social media, saying through sobs that she was “disgusted” and “heartbroken.”

The government later confirmed that Pollock was the only Canadian child with the disease whose medication would not be publicly funded.

After the funding was cut, a campaign to privately purchase Brineura for Charleigh was launched amid criticism from various corners of the political spectrum, including B.C. Conservative Leader John Rustad, who accused the government of creating “GoFundMe health care.”

Port Coquitlam Mayor Brad West, a former NDP staffer, also criticized government last week.

“Isn’t one of the fundamental roles of elected government to offset the cold, cruel indifference of bureaucracy? Shouldn’t our elected officials be the ones who humanize the system?” he asked on social media. “Especially from a party that claims the mantle of compassion. Otherwise what’s the point.”

When asked about the criticism, Osborne said Friday she “absolutely” understood the frustration B.C. residents have expressed about the girl’s case.

“I share a lot of that myself,” she said. “I also have seen the massive outpouring of support for Charleigh and for her family, which is evidence that British Columbians care, and they care deeply.”

She added that people want decisions about care to be made by health professionals and medical experts.

“But I also know that British Columbians never want to see a child like Charleigh suffer … or be put in the middle of that,” Osborne said.

Situations like Pollock’s highlight what the minister said is “the urgent need for stronger, more transparent processes,” particularly around Brineura.

Osborne said she has asked the Therapeutics Initiative — an independent body based at the University of B.C. — to conduct a thorough, evidence-based review of Brineura.

She said she urged BioMarin Pharmaceuticals, the company that manufactures Brineura, to promptly request a formal review by the Canadian Drug Agency of the current reimbursement criteria.

Osborne called on Ottawa to “urgently expedite” implementation of the National Strategy for Drugs for Rare Diseases that would allow for a consistent national approach that would ensure access for all provinces and territories.

Brennan Day, Conservative MLA and Opposition critic for rural and seniors’ health, welcomed the government’s reversal in a statement.

Day called the decision a “victory for Charleigh, her family, and every British Columbian who stood up and demanded better” but questioned the process that led to it.

“The government made the right call, but only after being pushed to the brink by public outrage and media scrutiny,” Day said.

He added that the decision shows a “deeply broken” system that “only responds when headlines get loud enough, and families go public.”

This report by The Canadian Press was first published July 18, 2025.

Wolfgang Depner, The Canadian Press