In a surprising and positive development to this story, the government of British Columbia has agreed to restore funding for Charleigh Pollock’s medication. Charleigh, a 10-year-old girl living on Vancouver Island with an incurable Batten Disease, is one such win. It was the result of immense public pressure and scrutiny that led to this decision. It followed after the province originally decided to stop covering Brineura, a treatment that runs patients an average of $1 million a year.
Charleigh is the sole Canadian child with Batten Disease who isn’t having her medication covered. What’s more, she continues to be the only person in British Columbia to have this unusual disease. This funding reversal has produced breathless relief and musical outrage. This tension was compounded when four members of the CMS’ Expensive Drugs for Rare Diseases Committee, who had proposed the original funding cut, resigned in protest.
Background on Charleigh Pollock
Charleigh Pollock’s fight against Batten Disease is intensely personal for her family. Her mother, Jori Fales, posted a very emotional video on social media to express her heartbreak and disgust. She was heartbroken when she found out that the federal government had made the decision to stop paying for her daughter’s medication.
The committee’s reasons why funding should be stopped are as follows. Taken as a whole, this decision dropped Charleigh and her family into a very tenuous position. That emotional toll just weighed really heavily on the Pollock family as they were left anxiously wondering if their daughter would have access to the care she needed.
In her TikTok, Jori Fales urged the government to change course, emphasizing the precariousness of Charleigh’s condition.
“I share a lot of that myself,” – Josie Osborne
Special extraordinary step by Health Minister Josie Osborne. She took it personally enough that she called Jori Fales herself to let her know that money was going to be restored. Though Osborne did not return messages from the Driver, in her interview with Fales, she said she never intended to cause Charleigh or her family any pain.
“I apologized for the pain and the suffering that they’ve been through as part of this,” – Josie Osborne
Government Response and Controversy
The relieasntment of funding for Charleigh’s medication has ignited a stormy public discussion. Public opinion and reactions from the medical community are divided. Hundreds more are celebrating this as a victory for Charleigh and her family. Opponents hail the judgment as a big blow against the government’s original decision to withdraw funding.
Brennan Day, a health care reform advocate, issued a clear demand that government be held accountable. He noted that this case reveals a tragic gap between bureaucratic procedures and human empathy.
“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?” – Brennan Day
Day emphasized the importance of public outrage and media scrutiny in pressuring the government to change course. He described the situation as a “victory for Charleigh, her family, and every British Columbian who stood up and demanded better.”
“The government made the right call, but only after being pushed to the brink by public outrage and media scrutiny,” – Brennan Day
Aftermath and Future Directions
In the wake of the federal government’s announcement to restore that funding, four members of the Expensive Drugs for Rare Diseases Committee stepped down in protest. This action has fueled speculation about internal discord within the committee and what this means for larger appropriations recommendations in the upcoming cycle.
The resulting lack of accountability prompted concerns from a spokesperson within the Ministry of Health, arguing that the confidentiality commitments surrounding the committee. They stressed that, because of these agreements, they are not able to name those who resigned.
“When experts join the committee, government commits to keeping their names confidential,” – Ministry spokeswoman
Health Minister Osborne has already made moves to address these unfortunate circumstances. He has called on the Therapeutics Initiative to do an independent, evidence-based review of Brineura. This review aims to demystify the therapeutic landscape for patients with RD. It goes further to make sure future decisions are based on what the medical evidence shows and patient needs are.
