Latest news with #ExpensiveDrugForRareDiseaseCommittee
Global News
4 days ago
- Health
- Global News
Terminally-ill B.C. girl with extremely rare disease will no longer have drug funded
The B.C. Ministry of Health has determined that a terminally ill nine-year-old girl will no longer continue to get access to a life-changing drug. Charleigh Pollock has a neurological disorder called Batten disease that leaves her with recurring severe seizures and mobility loss, and will eventually cut her young life short. Her mother, Jori Fales, was informed on Wednesday that her daughter's final government-funded treatment will be on Thursday. Fales says a drug called Brineura has stabilized Charleigh's condition and radically improved her quality of life since her 2019 diagnosis. The drug is expensive, carrying an annual bill for the twice-monthly infusions of about $1 million. Choking back tears, B.C. Health Minister Josie Osborne said at a press conference on Wednesday that 'Charleigh has met the discontinuation criteria.' She said there is no cure for Charleigh's condition and Brineura is not an anti-seizure medication. Story continues below advertisement She added that clinical evidence has shown that the drug is no longer benefiting Charleigh. Earlier this year, the province's Expensive Drug For Rare Disease Committee determined the drug was no longer meeting the criteria for funding in this case. Health Minister Josie Osborne stepped in and asked for an additional review, extending the drug coverage for an additional four months. 2:18 Fight for B.C. girl's life-changing medication The Canada Drug Agency has now done the review for Brineura and based on that review, the province determined the drug was no longer eligible for funding. Get weekly health news Receive the latest medical news and health information delivered to you every Sunday. Sign up for weekly health newsletter Sign Up By providing your email address, you have read and agree to Global News' Terms and Conditions and Privacy Policy Charleigh is one of fewer than 20 children in Canada with this rare condition. She is the only patient in B.C. and was diagnosed just a few weeks before her fourth birthday. The B.C. government has never overruled the independent rare drug committee on a drug funding decision. Story continues below advertisement The United Kingdom recently decided to stop publicly funding the drug in all cases. In British Columbia, there is still funding available in certain circumstances and is reviewed on an individual basis. 2:20 B.C. set to end child's crucial drug treatment funding In a previous interview, Fales told Global News losing access to the drug would be 'catastrophic' for her daughter. 'She will have seizures again, her organs will start shutting down, she will require suction to breathe… it basically means she is going to suffer horrifically and be put to an earlier death,' she said. 'This life is painful enough, having to raise a terminally ill child, and now having to fight to keep her in this world — like, just let us have our life back and let us have our child for the time we have left and let her be pain-free.' Story continues below advertisement A GoFundMe remains active for anyone who wants to donate to the family.
CTV News
14-06-2025
- Health
- CTV News
Family of Charleigh Pollock told decision coming soon on funding for her rare disease
Charleigh Pollock poses on a field trip with her classmates on June 13, 2025. Charleigh Pollock is a nine-year-old girl who suffers from Batten disease, a rare neurodegenerative disorder that leads to the progressive loss of brain function. Charliegh was diagnosed at the tender age of three after she began suffering from relentless seizures. She was put on a drug call Brineura, which slowed the progression of the disease and stopped the seizures – until the B.C. government informed her medical team in February that she would no longer be covered. 'The last five months have been agonizing,' said Jori Fales, Charleigh's mother. 'It's on our minds every night and every morning, all day long.' The drugs is expensive, Fales said, costing $844,000 per year. Charleigh's team appealed the province's decision and the health minister stepped in, extending the treatments while the appeal process was ongoing. Fales said she's recently been told a decision is coming soon. 'We will hear the final decision before the 19th of June,' she said. Charleigh's mother fears the worst if the appeal doesn't go in her daughter's favour. 'Brineura is the only defence against this horrible disease, so if you take it away she will decline, lose more skills and will leave us,' she said. The province's Expensive Drug For Rare Disease Committee has been tasked with making the decision if Charleigh's treatment will be funded going forward. During that appeal process the committee asked the Canada Drug Agency to do an evidence review for Brineura. The findings of that report is giving Charleigh's mother hope. 'It says, 'insufficient data to establish discontinued criteria,'' said Fales. 'Without the appropriate data to help inform stopping the drug, the discontinuation should truly be a clinical decision made with the health-care team and the families impacted with this disease.' Charleigh's medical team is in full support of the nine-year-old's continued Brineura treatment. June 19 – the same day the family has been told they will receive the province's decision – is also the next scheduled infusion treatment. If the decision doesn't go in Charleigh's favour, that will be her last treatment with the drug that her mother says is keeping her alive. 'Then we start preparing ourselves for the days ahead,' said Fales.
