The girl’s mother ‘very grateful’ with the rare situation after BC restores coverage of $ 1m drug

Jori Fails are breathing relief this week, when the province will once again provide coverage for an expensive medicine after learning, her 10 -year -old daughter needs to treat her rare and terminal genetic condition.

“It has been a very long battle for our family,” Fals said.

“Of course, we would never have happened, but would have been very grateful with the result.”

On Thursday, the Health Minister of British Columbia said that Charleg Pollock will once again receive coverage for Brineura. The drug treats neuronal cereoid lipophyusinosis type 2, which is also known as CLN2 or baton disease, resulting in many seizures every day – eventually causing brain damage.

Pollock, who lives on Vancouver Island, is one of the 13 children in Canada and is the only person in BC with the disease. Its name was known in 2019 when the province announced that it would cover the cost of the drug, which is given to the brain through a infusion of fluid to slow down the progression of CLN2.

Funding for medicine was approved when Pollock was three years old.

Fails said that before Brinura, there were more than 100 seizures in Pollock each day.

“She was in pain and she was suffering and we were very grateful to bring the British Columbia Brineura,” Fals said.

Osborne said that the girl’s position last month reached the point where it met the norms of closing using a $ 1 million per year drug.

Pollock’s family appealed for that decision, and many experts and physicians argued that Brinura was improving the quality of life of the young girl.

But the Health Minister quoted the findings of a medical review committee, saying, “Once a patient’s motor and language functions have declined at a certain point, Brinura no longer slows down the progress of CLN2.”

Osborne announced last week that there would be no change in the committee’s decision that the drug is no longer working, saying that she knew that the result of the review process was not what the girl’s family wanted.

But Osborne said on Thursday that Pollock’s coverage has been restored and will be available to the girl “As long as the Treating Physician and Family Consider it appropriate.”

Osborne said in a statement, “I strongly believe that a decision should be taken by health experts to ensure that they are based on the best available evidence.”

“The letter I received today from baton pathologists confirms that there is significant disagreement among health experts on Brinura, and it is not acceptable that Charliga and his family suffer as a result of that disagreement about the use of Brinura for baton disease.”

Speaking on CBC On the coast On Thursday afternoon, Premier David EB said he was amazed with the support of Pollock and his family.

He reiterated that the initial decision to discontinue the coverage of Brinura was not made by the Health Minister.

“Health decisions should not be made by politicians. When necessary, they should be made by experts and otherwise treated physicians,” said EB.

On Friday, four members of the Rare Disease Committee resigned in view of the issue for BC’s expensive medicines.

The Ministry of Health confirmed the resignation in a brief statement on Friday. It states that the committee has about 50 members, including sub -committee.

Fails said they hope that it does not happen for any other family, should this situation arise in the future.

“I think the ball was dropped quite often,” he said.

Now, she is planning to focus all her attention on her daughter.

“I just love that small human being more than anyone in the whole world, and I am very grateful that he will be very much with us now.”