Latest news with #Brineura
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.
Global News
18 hours ago
- Health
- Global News
B.C. mom says her daughter's right to live taken after province stops funding drug
The mother of a terminally ill nine-year-old girl said she is still processing news she received from the B.C. government on Wednesday. 'I think we're still in shock,' Jori Fales said. Her daughter, 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. The B.C. government had been funding a drug called Brineura, which the family said has stabilized Charleigh's condition and radically improved her quality of life since her 2019 diagnosis. On Wednesday, the government told Charleigh's family that 'Charleigh has met the discontinuation criteria' and her last government-funded dose would be given on Thursday. 'I wholeheartedly did not think that this was going to be the outcome after the last five months,' Fales said. Story continues below advertisement 'So we're still processing. Emotions have gone from sheer heartbreak to anger to sadness. It's just, we've been on a roller coaster the last 24 hours. Today is a really sad day, taking Charleigh to the hospital for her last infusion. 'It's been six years of doing this with my daughter. It's tough.' 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. 'There's a lot of tears this morning,' Fales said. 'But you know who's smiling? Charleigh. She's smiling.' She added she wished they had received more notice that the funding was ending, as they had no time to grieve. 'I think it's a little heartless. We could have used some time to process and prepare. I mean there's no way of really preparing to lose the medication that's keeping your daughter's quality of life going, but if we had had some time.' Fales expressed frustration because no one knows what it's like to live in their world. 'Within 14 days, the medication will have left her brain, her system,' she added. 'We are not really prepared for what's to come. As her parent, I will be reaching out to the Cannuck Place Hospice, I will asking questions, I feel there's things that we need to learn to be prepared for. Things that we were not ready for, that Charleigh's not ready for. But this is happening now. So we're being forced to move forward.' Story continues below advertisement 2:20 B.C. set to end child's crucial drug treatment funding Fales said her daughter's right to live has been taken from her. 'It should have always been the decision of her medical care team and her family and Charleigh. And none of that has happened here. And I'm very sorry to my daughter. She's being let down and we need to carry this now for the rest of our lives and it hurts a lot.' Fales said Charleigh did not deserve this disease or this outcome and all they can do is love her and make every day count. She said she will continue to share Charleigh's journey online. 'I'm not going to hide what's to come. I feel that it's important for advocacy and awareness of this disease that people see what it's all about. Story continues below advertisement 'There's always the hope for a cure one day. It obviously won't be in Charleigh's time, but we always, always remain hopeful that other families will not have to go through this.'
CTV News
2 days ago
- Health
- CTV News
B.C. not funding costly treatments for 9-year-old with rare disease
Charleigh Pollock poses on a field trip with her classmates on June 13, 2025. A Vancouver Island family is heartbroken after learning the B.C. government won't continue funding a vital drug treatment for Charleigh Pollock that her parents says is keeping her alive. Health Minister Josie Osborne announced the province's decision Wednesday afternoon. 'There is no evidence to support changing the discontinuation criteria, or to support the ministry continuing to provide coverage for Brineura given the advanced condition and stage of Charleigh's condition,' Osborne said. Brennan Day, the B.C. Conservatives' critic for rural health and seniors health, pounced on the decision. 'The health care authority should be ashamed,' said Day. Charleigh suffers from Batten disease, a rare neurodegenerative disorder that leads to the progressive loss of brain function and will ultimately lead to her death. Related: B.C. to cut off drug treatment for 9-year-old girl with rare disease She was diagnosed at the tender age of three after Charleigh began suffering from relentless seizures. She was put on the drug Brineura, which slowed the progression of the disease and stopped the seizures completely. 'Their journey, like all families that have a child diagnosed with a rare illness, is one that is filled with uncertainty, fear and endless advocacy,' said Osborne. In February, the province informed Charleigh's medical team that she would no longer be covered for the expensive drug, which costs $844,000 per year. The young girl's medical team then appealed that decision, and the health minister stepped in and extended those treatments while the appeal process was ongoing. CTV News spoke with Jori Fales, Charleigh's mother, last week after being notified by the government that a decision would be coming out before June 19. 'It's my last mother's plea,' said Fales. 'This is a crucial decision that affects my daughter's life and our family, and I just want them to make the right decision.' Fales understandably was not available for comment Wednesday. B.C.'s Expensive Drug For Rare Disease Committee was tasked with making the decision that ultimately found Charleigh no longer met the criteria for the drug coverage. During that process, the committee asked the Canada Drug Agency to do an evidence-based review of Brineura. The findings in that report gave Fales hope that the decision would go in Charleigh's favour. 'Insufficient data to establish discontinued criteria,' said Fales last week while reading quotes from the report. 'Without the appropriate data to help inform stopping the drug, continuation should truly be a clinical decision made with the health care team and the families involved.' The critic for rural health said he understands that tough decisions have to be made, but question the way the province went about that appeals process, not communicating with the family for months. 'The up and down decision making and the lack of transparency from the health authority around this is truly appalling,' said Day. Thursday will be Charleigh's final Brineura infusion. After that she will no longer have access to the life-preserving drug. 'Brineura is the only defence against this horrible disease, so if you take it away she will decline, lose more skills and leave us,' 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
Vancouver Sun
2 days ago
- Health
- Vancouver Sun
Drug coverage to be discontinued for Vancouver Island girl with fatal condition
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. 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. Start your day with a roundup of B.C.-focused news and opinion. By signing up you consent to receive the above newsletter from Postmedia Network Inc. A welcome email is on its way. If you don't see it, please check your junk folder. The next issue of Sunrise will soon be in your inbox. Please try again Interested in more newsletters? Browse here. 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.' 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. 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. 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. 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. 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@
