Latest news with #JosieOsborne
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.
Global News
2 days ago
- Health
- Global News
As B.C.'s over-50 population grows, advocates want the shingles vaccine covered
Seniors' advocates are calling on the province to pay for the shingles vaccine. Currently, the shingles vaccine is not covered under B.C. MSP but it is funded in some other provinces for certain age groups. The vaccine is recommended for adults aged 50 and older and according to studies is more than 90 per cent effective. Almost 40 per cent of B.C.'s population is over 50 and physicians warn that shingles, which is a debilitating condition itself, can lead to other, more serious health concerns. Victoria-based physician, Dr. Wayne Ghesquiere, said any barriers to vaccination should be removed. 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 'Removing any obstacle to getting the vaccine, sometimes cost is an obstacle, the number-one obstacle is actually a health-care provider recommending the vaccine and educating the public what are the risks of shingles and the benefits of it,' he said. Story continues below advertisement 'That's the number-one obstacle. Patients just aren't aware of the risks that they have.' 1:53 N.S. to cover cost of shingles vaccine for residents 65 and older starting end of May Two doses of the vaccine are usually required and in B.C., the cost is approximately $150 per dose. B.C. Health Minister Josie Osborne said they are always open to discussions about what should be funded by the government. 'I think that's an excellent question in terms of the impact shingles as a disease can have on people and their health,' she said. Seniors' advocates would like to see the vaccine covered under MSP. 'The only thing standing in the way of British Columbia providing it is having the political will to do so,' Laura Tamblyn Watts, founder and CEO of CanAge said. Story continues below advertisement 'And making sure that we are standing up for science.'
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.
