The mother of a nine-year-old British Columbia girl with a rare and deadly disease says she's "disgusted" with the decision not to renew coverage for medication that costs about $1 million a year.
Charleigh Pollock's mother, Jori Fales, said through sobs in a social media video that there's been a "complete disregard" for the life of her daughter who suffers from Batten disease.
Fales posted the video moments after B.C. Health Minister Josie Osborne announced on Friday that there would be no change to an expert committee's decision that the drug Brineura is no longer helping slow the progress of Pollock's disease.
Fales said through gasps and tears that she's "heartbroken" by the news and apologizes to her daughter, saying the family "fought so hard."
"We will never forget or heal from this traumatic situation," the video's caption reads.
Osborne told reporters on a conference call that she knows the outcome of the review process is not what the family wanted.
"I know that this has been an incredibly difficult journey for Charleigh and her family, and my heart absolutely goes out to them," she said.
Osborne said she met Pollock's parents last week to accept further information about Batten disease that they said had not been considered by the B.C. rare diseases expert committee.
The family, she said, had specifically flagged two international experts on Batten disease that had not been consulted.
Osborne told reporters that her ministry confirmed the committee had reviewed and evaluated eight separate studies by those experts.
"In Charleigh's case, the ministry can confirm now that all the relevant evidence that was presented by the patient advocates was already considered by the Expensive Drugs for Rare Diseases 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," Osborne said.
She said cost was not considered and all provinces rely on clinical criteria recommended by Canada's Drug Agency.
"The committee is in the extremely difficult position of making decisions like these regularly," Osborne said, adding that it is important that everyone be treated fairly.
The girl is the only one with Batten disease in the province and fewer than 20 people have it in Canada.
Osborne said there are about 650 other people in B.C. who receive drugs for rare diseases, "and the committee uses the same rigorous process" for all.
"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," Osborne said.
B.C. is not the only jurisdiction grappling with the issue, she added, noting that the United Kingdom announced it would no longer provide coverage of Brineura for future Batten disease patients due to the limited evidence of its long-term effectiveness.
The minister said she has been made aware of funds that have been raised independently that could be used to purchase the drug privately, and that Island Health has been in contact with the family to discuss that option.
"Going forward, the ministry will do everything we can to support them and support the team, particularly as Charleigh's family moves forward with their decision and whether they want to access treatment that they will pay for privately," Osborne said.
This report by The Canadian Press was first published July 11, 2025.
Brieanna Charlebois, The Canadian Press
