Latest news with #BattenDisease
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.
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.
CTV News
2 days ago
- Health
- CTV News
B.C. government won't fund drug for 9-year-old with rare disease
Charleigh Pollock poses on a field trip with her classmates on June 13, 2025. VICTORIA — The British Columbia government says it will no longer fund an expensive drug for a nine-year-old girl who has a rare and terminal condition. Health Minister Josie Osborne says in a statement that Charleigh Pollock's condition with Batten Disease has reached the point where she meets the criteria to discontinue the use of Brineura. The girl has been receiving the drug therapy since 2019 at a cost of about $1 million a year. Related: B.C. to cut off drug treatment for 9-year-old girl with rare disease She is the only person in the province, and one of 13 children in Canada, who has the genetic and fatal disorder that results in multiple seizures a day. The statement says clinical evidence shows that once a patient has declined in motor skills and language functions by a certain amount, the drug is no longer a benefit in slowing the progression of the disease. Osborne says a Canada Drug Agency review of the latest research on the girl's disease found there was no evidence to support its continuing drug coverage, given the advanced stage of her condition. This report by The Canadian Press was first published June 18, 2025.
Toronto Star
2 days ago
- Health
- Toronto Star
B.C. government won't fund drug for rare disease for nine-year-old girl
VICTORIA - The British Columbia government says it will no longer fund an expensive drug for a nine-year-old girl who has a rare and terminal condition. Health Minister Josie Osborne says in a statement that Charleigh Pollock's condition with Batten Disease has reached the point where she meets the criteria to discontinue the use of Brineura. The girl has been receiving the drug therapy since 2019 at a cost of about $1 million a year. ARTICLE CONTINUES BELOW She is the only person in the province, and one of 13 children in Canada, who has the genetic and fatal disorder that results in multiple seizures a day. The statement says clinical evidence shows that once a patient has declined in motor skills and language functions by a certain amount, the drug is no longer a benefit in slowing the progression of the disease. Osborne says a Canada Drug Agency review of the latest research on the girl's disease found there was no evidence to support its continuing drug coverage, given the advanced stage of her condition. This report by The Canadian Press was first published June 18, 2025.
