Latest news with #JoriFales
CBC
13 hours ago
- Health
- CBC
Vancouver Island family heartbroken as B.C. stops funding $1M drug for girl with terminal condition
A Vancouver Island family is in shock after learning the British Columbia government will stop funding an extremely expensive medication their young daughter needs for a rare genetic condition. Nine-year-old Charleigh Pollock is the only person in B.C. with Batten disease, or neuronal ceroid lipofuscinosis type 2 (CLN2). It's a rare and terminal genetic disorder that causes multiple seizures daily, eventually causing brain damage. Pollock's mother, Jori Fales, said the family is still processing the news, announced Wednesday, that the B.C. government will pull funding for Pollock's access to Brineura, a $1-million-per-year medication which is given through an infusion of fluid to the brain to slow the progression of CLN2. "Emotions have gone from sheer heartbreak to anger to sadness; it's just been a roller-coaster the last 24 hours," Fales said. Thursday marked Pollock's last infusion of Brineura. Fales called the government's decision to pull funding with one day's notice before the last infusion "a little heartless." She said her daughter has been let down. "At the end of the day, it should have always been the decision of her medical care team, and her family and Charleigh. And none of that has happened here." On Thursday, B.C. Minister of Health Josie Osborne said it was a tough decision to end the funding. She said the cost of the medication had nothing to do with the reason the funding was pulled, but that it was determined Pollock's condition had deteriorated to the point where she met "discontinuation criteria" for Brineura. "Clinical evidence shows that once a patient has declined in their motor and language functions by a certain amount, Brineura no longer has the benefit of slowing down the progression of the disease, although patients can continue to live on into mid-adolescence," Osborne said. Fales denied that her daughter's condition has worsened. "Charleigh is not in advanced progression of her disease. This is simply not true," she said. Dr. Ineka Whiteman, the head of research and medical affairs for the Batten Disease Support and Research Association U.S. and Australia and head of the Batten Disease Global Research Initiative, called the B.C. government's decision "appalling." She expressed frustration with the provincial government's emphasis on criteria to discontinue the medicine, which she said is based on old clinical trials. She added other families around the world are becoming concerned their access to the medication may also be reconsidered. "This is not just about a single child. This is really setting a very, very dangerous precedent." Fales said she plans to share her daughter's journey and advocate for others dealing with the disease.
CTV News
16 hours ago
- Health
- CTV News
‘Wrong side of history': B.C.'s decision not to cover terminally ill girl's treatment met with sharp criticism
In a social media post an emotional mother is reacting to the news B.C. will not continue funding an expensive drug treatment for her nine-year-old daughter's rare disease. Charleigh Pollock suffers from Batten disease, a rare and fatal neurodegenerative disorder. Her mom, Jori Fales, choked back tears while providing an update on her daughter's final treatment. 'Our family is heartbroken,' said Fales. 'We are processing this news and at this time there just not much else I can say.' Racked with grief, Fales addresses her daughter directly. 'I'm just really sorry Charleigh and we love you so much,' she said. The emotional cascade came Wednesday, after a message from B.C.'s Health Minister Josie Osborne on saying the province will no longer cover a drug called Brinearu. 'There is no evidence to support changing the discontinuation criteria or to support the ministry continuing to provide coverage … given the advanced stage of Charleigh's condition,' said Osborne. But Charleigh's mother says the treatments for a disease that will eventually kill her daughter are still working. 'I want the facts to be straight here,' Fales said. 'My daughter is not in advanced decline and she has been stable for years on this medication. So, that comment made my blood boil yesterday.' After several extensions from the province, Thursday was the nine-year-old's final infusion treatment with the costly drug. 'I took a picture this morning for her last infusion, and she has a huge smile on her face,' said Fales. 'Everyone's heart is breaking in the hospital, and this is just a really sad day for everyone.' Lori Brown, president of Batten Disease Support & Research Association Canada, says Charleigh is the only child that she is aware of to have been taken off of the drug by anyone other than their medical team or parents. 'B.C. is on the wrong side of history if they stick with this decision,' said Brown, adding that the province's decision has sent shockwaves through the small yet global Batten Disease community. 'They're rattled, they hear that one child is being taken off and they say, 'OK, what about my child?' What lies ahead for Charleigh is unknown, but her mother says she expects to have to make some heartbreaking decisions and face a devastating reality. 'Charleigh turns 10 in two weeks and I know in my soul we will not see her 11th birthday, and I am angry about that,' said Fales.
The Province
2 days ago
- Health
- The Province
Drug coverage to be discontinued for Vancouver Island girl with fatal condition
The drug, which costs about $1 million a year, is intended to slow — but not stop — the decline in patients' ability to walk and talk. Jori Fales with daughter Charleigh Pollock, 9, who has a rare neurodegenerative condition known as Batten disease. Photo by Jori Fales / HANDOUT Coverage of an expensive drug for a nine-year-old Langford girl with a rare fatal condition is being discontinued, B.C.'s Health Ministry says. This advertisement has not loaded yet, but your article continues below. THIS CONTENT IS RESERVED FOR SUBSCRIBERS ONLY Subscribe now to read the latest news in your city and across Canada. Exclusive articles by top sports columnists Patrick Johnston, Ben Kuzma, J.J. Abrams and others. Plus, Canucks Report, Sports and Headline News newsletters and events. Unlimited online access to The Province and 15 news sites with one account. The Province ePaper, an electronic replica of the print edition to view on any device, share and comment on. Daily puzzles and comics, including the New York Times Crossword. Support local journalism. SUBSCRIBE TO UNLOCK MORE ARTICLES Subscribe now to read the latest news in your city and across Canada. Exclusive articles by top sports columnists Patrick Johnston, Ben Kuzma, J.J. Abrams and others. Plus, Canucks Report, Sports and Headline News newsletters and events. Unlimited online access to The Province and 15 news sites with one account. The Province ePaper, an electronic replica of the print edition to view on any device, share and comment on. Daily puzzles and comics, including the New York Times Crossword. Support local journalism. REGISTER / SIGN IN TO UNLOCK MORE ARTICLES Create an account or sign in to continue with your reading experience. Access articles from across Canada with one account. Share your thoughts and join the conversation in the comments. Enjoy additional articles per month. Get email updates from your favourite authors. THIS ARTICLE IS FREE TO READ REGISTER TO UNLOCK. Create an account or sign in to continue with your reading experience. Access articles from across Canada with one account Share your thoughts and join the conversation in the comments Enjoy additional articles per month Get email updates from your favourite authors Charleigh Pollock, who has a neurodegenerative condition known as Batten disease, will have her last publicly funded infusion of the drug Brineura on Thursday. The drug, which costs about $1 million a year, is intended to slow — but not stop — the decline in patients' ability to walk and talk until they reach the end stage of the disease. Health Minister Jose Osborne said Wednesday that Canada's Drug Agency has completed its review and there is no new evidence to change its 2019 recommendation to discontinue coverage of the drug, given the advanced stage of Charleigh's condition. Osborne said the case has been one of the most difficult for her and her team during her time as minister. 'We all share the desire to do everything we can to care for this young girl,' she said. 'I empathize deeply with Charleigh's family and my heart goes out to them.' Essential reading for hockey fans who eat, sleep, Canucks, repeat. By signing up you consent to receive the above newsletter from Postmedia Network Inc. Please try again This advertisement has not loaded yet, but your article continues below. Reached by the Times Colonist on Wednesday, mother Jori Fales said she was still processing the news and unable to speak about the decision, which comes in the wake of a previously announced extension of coverage to June 28. Charleigh Pollock, 9. Photo by Jori Fales / HANDOUT Fales has said that two weeks after discontinuation of the drug, Charleigh likely faces 'rapid deterioration, irreversible loss of function and ultimately death.' 'I just need to process this for today,' she said. Charleigh's parents earlier said their daughter had seen benefits from bi-weekly treatments with Brineura, the only drug approved to treat the form of the disease that Charleigh has, known as ceroid lipofuscinosis type 2 (CLN2). Charleigh has been taking the drug for almost six years, and her family has said that as a result, she no longer has multiple seizures a day. This advertisement has not loaded yet, but your article continues below. Osborne noted that the drug is not an anti-seizure medication, adding there are other drugs to control seizures for patients with CLN2. Charleigh is the only child in B.C. and one of fewer than 20 in Canada with Batten disease, which began to affect her at the age of three, when she suffered seizures and began to lose her ability to walk and talk. The family was informed in January that the Canadian Drug Expert Committee had recommended ending the funding, and that Charleigh's last publicly funded infusion would be Feb. 27. The committee, made up of drug experts as well as lay members appointed by Canada's Drug Agency, makes reimbursement recommendations to participating federal, provincial and territorial publicly funded drug plans. This advertisement has not loaded yet, but your article continues below. The Health Ministry had said in a statement that while all provinces had adopted the national discontinuation criteria set out by Canada's Drug Agency, 'this disease is so rare that Charleigh is the first Canadian patient to reach the Canada Drug Agency's criteria for discontinuing Brineura coverage.' After the family's story went public, Osborne directed ministry staff to 'urgently review all of the facts' and determine whether the treatment had quality-of-life benefits for Charleigh. Given the extraordinary circumstances, 'we wanted to ensure no stone was left unturned,' Osborne said Wednesday. B.C. covers about 30 drugs under the Expensive Drugs for Rare Disease program. The cost of an individual drug is not a factor considered by the expert committees in recommending coverage, the Health Ministry says. This advertisement has not loaded yet, but your article continues below. Since the Expensive Drugs for Rare Diseases review process was established in 2007, the ministry has never provided ongoing coverage for a drug against the recommendations of clinical experts and criteria established by Canada's Drug Agency, a ministry statement said. Courtenay-Comox MLA Brennan Day, the B.C. Conservative critic for rural and seniors health, urged the province to reverse the decision on compassionate grounds. 'I can't imagine the emotions the family is feeling,' said Day. ceharnett@ Read More Vancouver Canucks Vancouver Canucks News BC Lions Local News
CTV News
7 days ago
- 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.
