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.
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
CTV News
15 minutes ago
- CTV News
Why one U.S. doctor is moving to Vancouver Island
Dr. Muthana Yacoub has been working as a family physician in Woodland Park, Colo., for six years now. But by November, he will be practising medicine in Colwood, B.C. 'We finally visited this past weekend and we absolutely fell in love with it,' Yacoub said. He'll work at a unique, city-owned clinic, which has recruited four doctors from the U.S., the U.K. and other parts of Canada. Yacoub, who spent part of his childhood living in Toronto, already had Canadian citizenship. He heard about the new Vancouver Island clinic while attending a medical conference in Vancouver last November, and was ready for change. 'You do see this pressure from insurance companies where you feel like you're just kind of catering to their whims and those whims change every six months,' he explained. 'It can be extremely frustrating, because you know what you want to do for the patient, what the right thing to do for the patient is, but you have no efficacy in actually getting that done.' The Ministry of Health is hoping more U.S. doctors feel the same as Yacoub. The province recently began a $5-million recruitment campaign running ads in Washington State, Oregon and parts of California. This week, a branded truck was giving out free coffee to health-care workers in Seattle. 'Doctors of BC supports all efforts to address the province's health workforce challenges,' said Dr. Charlene Lui, the organization's president. 'It's so important to improve timely and quality access to care for our patients.' Lui said Doctors of BC is willing to work with the Ministry of Health and other key partners to 'explore solutions for this very complex issue, including integrating foreign-trained physicians not only from the U.S., but around the globe.' She said they are exploring questions around licensing with stakeholders. The ministry said more than 1,600 health-care providers have expressed an interest in moving to our province. However, despite requests from CTV News, the ministry did not provide any numbers on how many doctors and nurses had actually committed to making the move. In a statement, the ministry said: 'Steps are being taken to get those interested to B.C., but this is a process that takes time.''We are also working with our federal partners on the immigration front,' the statement added. Yacoub said he thinks the biggest barrier for workers coming from the U.S. is 'the concept of moving to a different country and the whole licensing situation.' He also pointed out that America is facing its own family doctor shortage, particularly in rural areas. He said despite flaws in B.C.'s health-care system, he believes it's a much better system than the one he is currently working in. 'Even the poorest among us can get care if they need it, whereas here (in the U.S.), it's a coin toss. They may not get their care at all,' he said, adding that someone should not face bankruptcy to get medical treatment. Yacoub said Colwood has been very welcoming and he can't wait to make B.C. home. 'From the bottom of my heart, thank you,' he said.
CTV News
3 hours ago
- CTV News
Control zones set up in Fraser Valley, B.C., after Newcastle disease detected
The Canadian Food Inspection Agency is seen in Ottawa on Wednesday, June 26, 2019. THE CANADIAN PRESS/Sean Kilpatrick CHILLIWACK — The Canadian Food Inspection Agency has put up controls on the movements of birds around two commercial poultry farms experiencing the first outbreaks of virulent Newcastle disease in Canada in more than 50 years. The establishment of the primary control zones in the Fraser Valley means that birds, byproducts and items that have contacted the birds cannot be moved within or through the areas without permission. The agency says the virus affects both wild and domestic birds and can cause pink eye in humans, and birds at the infected farms must be culled. The agency says that before the disease was detected in B.C. this month, including at a commercial pigeon operation, the last infections in Canada were reported in 1973. The CFIA says the ailment is of great concern to the world's agricultural community since it's highly contagious and threatens poultry. It says Newcastle disease can decrease egg production in domestic birds and cause high numbers of sudden deaths in a flock, while wild birds can develop wing paralysis and be left unable to fly. It says the risk to humans is low if gloves are worn while handling infected birds, and that the disease was rarely found to kill wild birds before 1990. This report by The Canadian Press was first published June 20, 2025.
CTV News
9 hours ago
- CTV News
Quebec urges caution regarding tick, mosquito bites
From Jan. 1 to Oct. 26, 2024, 681 cases of Lyme disease were reported in Quebec. As summer begins, Quebec's Ministry of Health and Social Services is urging caution regarding tick and mosquito bites, which can transmit several diseases and viruses. Tick and mosquito populations are on the rise in several regions due to climate change, and the milder climate allows them to survive and thrive more easily. Quebec is reminding residents that ticks and mosquitoes can transmit Lyme disease, West Nile virus, and California Serogroup viruses, among others. The ministry notes that there are simple precautions people can take to protect themselves, such as using a DEET or icaridin-based mosquito repellent and wearing light-coloured, lightweight clothing. To protect yourself more specifically from ticks, prioritize walking on trails and avoid tall grass. If a tick attaches itself to your skin, remove it carefully, ideally within 24 hours. Lyme disease is the most common tick-borne disease in Quebec. As is the case elsewhere in the country, the numbers have increased significantly in recent years. In 2023, 2022, and 2021, there were 652, 586, and 709 cases, respectively. In comparison, there were 125 cases in 2014, 160 in 2015, and 177 in 2016. Lyme disease is transmitted by a tick bite carrying bacteria. It can also affect animals. In humans, the most common symptom of the disease is a red rash on the skin. Many people experience fatigue, fever, and body aches, but if the disease is not detected and treated quickly, the bacteria can spread through the bloodstream and cause other, more dire symptoms. If you suspect you may have been infected, Quebec recommends calling Info-Santé at 811. This report by The Canadian Press was first published in French on June 20, 2025.
