A family from Langford, BC, hoping to extend the life of his little girl, who has a rare disease, has been rejected again for the coverage of medicines that costs about $ 1 million a year.
Charleight Pollock, 9 years old, suffers from zeroid zeroides neuronal type 2, also known as Cln2 disease or battle, a rare and terminal genetic disorder that causes multiple seizures every day, which eventually causes brain damage.
Pollock’s mother, Jori Fales, says she is “disgusted” with the decision not to renew coverage.
Solloza in a video of social networks, saying that there has been a “complete contempt” for the life of her nine -year -old daughter, who suffers from Batten’s disease.
Fales published the video moments after the BC Health Minister Josie Osborne announced that there would be no change in the decision of an expert committee that the medicine, a brineura, no longer helps to stop the progress of Pollock’s disease.
The name of Pollock was known in 2019 when the province announced that it would cover the cost of drugs of $ 1 million per year, which is administered through a fluid infusion to the brain to delay the progression of Cln2.
The financing for the medication was approved when Pollock was three years old.
But Osborne said that once a patient has diminished in his motor and linguistic functions in a certain amount, Bring no longer slows the progression of Cln2.
Osborne says in a statement that she knows that the result of the review process is not what Charleight Pollock wanted.
She says she met with Pollock’s parents last week to accept more information about Batten’s disease that, according to them, had not been considered by the BC rare disease expert committee, which first recommended the financing of girl’s medicine.
But the statement says that the Committee considered the information much more, and the decision is still that the drug, bassure, no longer helps to stop the progress of the girl’s disease.
He says that the cost was not considered, and all provinces depend on the clinical criteria recommended by the Canadian Medicines Agency.
Osborne said that Pollock’s family had specifically marked two international experts in Batten diseases to those who had not been consulted. She told reporters that her ministry confirmed that the committee had reviewed and evaluated eight separate studies from those experts.
“In the case of Charleight, the Ministry can now confirm that all the relevant tests presented by the patient’s defenders were already considered by the expensive drug expert committees for rare diseases in February 2025 when Charleigh’s doctor appealed the decision to discontinue the treatment and had the opportunity to provide additional information and meet them to discuss the case,” Osborne said.
Osborne says that the committee “is in the extremely difficult position to make decisions such as these regularly”, and adds that it is important that everyone is treated fairly.
The girl is the only one with Batten disease in the province, and less than 20 people have it in Canada.
Osborne said there are another 650 people in BC who receive drugs for rare diseases “, and the Committee uses the same rigorous process” for all.
On the coast12:32Why BC stopped financing a $ 1m medication for a girl with a terminal condition
A family from Vancouver island has been disconsolate after receiving news that his little girl, Charleight Pollock, will no longer receive BC government treatment due to a rare genetic disease. The director of the Global Research Initiative of Batten’s disease, Ineka Whiteman, breaks down the evidence behind the decision and why she thinks she establishes a dangerous precedent for other children worldwide.
BC is not the only jurisdiction that struggles with the problem, says the statement, and points out that the United Kingdom announced that it would no longer provide coverage for sneaking for future patients with battery diseases due to the limited evidence of its long -term effectiveness.
“This has been one of the most challenging problems that I have worked since I became a health minister, and I took my role seriously to ensure that BC has drug review processes that are independent, based on evidence and treat people equally,” said Osborne in the statement.
The minister said that he has realized the funds that have been collected independently that could be used to buy the medicine in private, and that Island Health has been in contact with the family to discuss that option.
“In the future, the ministry will do everything possible to support them and support the team, particularly like Charleight The family advances with their decision and if you want to access the treatment they will pay privately, “said Osborne.
Jaspreet Bhatia is the owner of Local Pizza, located in the center of Victoria, a pizzeria that was raising money for Pollock on Friday.
Bhatia says that 50 percent of sales will be donated to the Pollock family.
She says she has two own children, and that “if there is something we can do for her, we will try to keep the family.”
“As a community, this is what we do. We join when someone is in a situation. We join and provide support.”
