VICTORIA \u2013 Four members of British Columbia\u2019s 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 with a rare disease.<\/p>\n
The fallout from the handling of Charleigh Pollock\u2019s case also saw Health Minister Josie Osborne \u201csincerely apologizing\u201d to the Vancouver Island girl\u2019s family on Friday.<\/p>\n
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.<\/p>\n
There was an uproar over the committee\u2019s recommendation to halt funding and while the government initially maintained it would not interfere in the decision, on Thursday Osborne announced the reversal.<\/p>\n
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.<\/p>\n
\u201cWe can\u2019t share the names of those who resigned,\u201d a ministry spokeswoman said in an email. \u201cWhen experts join the committee, government commits to keeping their names confidential.\u201d<\/p>\n
While the ministry said it could not speculate whether the members resigned in protest over Osborne\u2019s reversal, it said the resignations came after the minister\u2019s decision.<\/p>\n
Osborne apologized at a news conference on Friday, saying she also spoke with Pollock\u2019s mother, Jori Fales, late Thursday to express the regret she felt.<\/p>\n
\u201cI apologized for the pain and the suffering that they\u2019ve been through as part of this,\u201d Osborne said.<\/p>\n
Fales celebrated in a video posted on social media, saying the \u201cnightmare is over,\u201d adding she is \u201cbeyond grateful\u201d to supporters who backed her cause to have the funding restored.<\/p>\n
The province had cut off funding last month for the drug Brineura citing the committee\u2019s experts who said the medication was no longer helping slow the progress of the girl\u2019s disease.<\/p>\n
No cure exists for Batten disease, a rare neurodegenerative disorder that causes seizures, blindness and declining motor functions.<\/p>\n
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 \u201cstrongly\u201d opposed the funding discontinuation, calling for a review of the criteria that had guided that decision.<\/p>\n
Osborne said Charleigh should not suffer because of what she said was \u201csignificant disagreement\u201d among the groups of experts.<\/p>\n
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 \u201cdisgusted\u201d and \u201cheartbroken.\u201d<\/p>\n
The government later confirmed that Pollock was the only Canadian child with the disease whose medication would not be publicly funded.<\/p>\n
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 Conservative Party of B.C. Leader John Rustad, who accused the government of creating \u201cGoFundMe health-care.\u201d<\/p>\n
Former NDP staffer and current Port Coquitlam Mayor Brad West also criticized government last week.<\/p>\n
\u201cIsn\u2019t one of the fundamental roles of elected government to offset the cold, cruel indifference of bureaucracy? Shouldn\u2019t our elected officials be the ones who humanize the system?\u201d he asked on social media. \u201cEspecially from a party that claims the mantle of compassion. Otherwise what\u2019s the point.\u201d<\/p>\n
When asked about the criticism, Osborne said Friday she \u201cabsolutely\u201d understood the frustration B.C. residents have expressed about the girl\u2019s case.<\/p>\n
\u201cI share a lot of that myself,\u201d she said. \u201cI 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,\u201d she said.<\/p>\n
She added that people want decisions about care to be made by health professionals and medical experts.<\/p>\n
\u201cBut I also know that British Columbians never want to see a child like Charlie suffer \u2026 or be put in the middle of that,\u201d Osborne said.<\/p>\n
Situations like Pollock\u2019s highlight what the minister said is \u201cthe urgent need for stronger, more transparent processes,\u201d particularly around Brineura.<\/p>\n
Osborne said she has asked the Therapeutics Initiative \u2014 an independent body based at the University of B.C. \u2014 to conduct a thorough, evidence-based review of Brineura.<\/p>\n
She said she urged BioMarin Pharmaceuticals, the pharmaceutical company that manufactures Brineura, to promptly request a formal review by the Canadian Drug Agency of the current reimbursement criteria.<\/p>\n
Osborne called on Ottawa to \u201curgently expedite\u201d 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.<\/p>\n
Brennan Day, Conservative MLA and Opposition critic for rural and seniors health, welcomed the government\u2019s reversal in a statement.<\/p>\n
Day called the decision a \u201cvictory for Charleigh, her family, and every British Columbian who stood up and demanded better\u201d but questioned the process that led to it.<\/p>\n
\u201cThe government made the right call, but only after being pushed to the brink by public outrage and media scrutiny,\u201d Day said.<\/p>\n
He added that the decision shows a \u201cdeeply broken\u201d system that \u201conly responds when headlines get loud enough, and families go public.\u201d<\/p>\n
This report by The Canadian Press was first published July 18, 2025.<\/p>\n","protected":false},"excerpt":{"rendered":"VICTORIA \u2013 Four members of British Columbia\u2019s Expensive Drugs for Rare Diseases Committee have resigned after the government…\n","protected":false},"author":2,"featured_media":5746,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[33],"tags":[64,63,137,490],"class_list":{"0":"post-5745","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-medication","8":"tag-au","9":"tag-australia","10":"tag-health","11":"tag-medication"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/5745","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/comments?post=5745"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/5745\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media\/5746"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media?parent=5745"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/categories?post=5745"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/tags?post=5745"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}