The BC government said Wednesday that it will obtain funds for an extremely expensive drug used by a person in the province: a young girl from Vancouver Island.
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.
The name of Pollock was known in 2019 when the province announced that it would cover the cost of a drug of $ 1 million per year for it known as a brineura, which is administered through a fluid infusion to the brain to stop the progression of Cln2.
Pollock is the only person in BC with the disease, who has no cure.
“Face drugs for rare diseases add a layer of complexity to decision making,” said Health Minister Josie Osborne on Wednesday in a statement.
However, he said, the cost of the drug has nothing to do with the recommendations made by medical experts who made this decision to stop coverage.
The financing for the medication was approved when Pollock was three years old.
Osborne said that once a patient has decreased in their motor and linguistic functions in a certain amount, Bandy no longer slows the progression of Cln2.
“Last year, it was determined that Charleight’s condition had progressed to the point where he met the criteria for sinking,” he said.
From there, he said that the Ministry made a review of the situation.
The province said that the decision to cover drugs for patients under the expensive drug program for rare BC diseases are based on recommendations from an independent experts committee that use clinical criteria of the Canada Medicines Agency.
“I know this is not what Charleigh’s family wanted to listen. It’s not what none of us wanted to listen,” said Osborne.
In a Facebook publication made on June 13 before the decision was made, Pollock’s mother, Jori Fales, said that after reading the report of the drug agency, I could not see how the BC government would choose to stop the coverage.
She said that Pollock’s medical team feels continuing that the medicine is the best for your best interest.
“Anything except is simply cruel and incorrect,” he wrote.
“It is not the time of Charleight to suspend Brineura,” Fales added. “She is still benefiting and imploring the province that allows her to continue living and accessing this drug.”
