Health Minister says
Langford, a family of BC, is hoping to expand his little girl’s life, which is a rare disease, rejected for drug coverage, priced at around $ 1 million per year.
Charlegh Pollock, 9, is suffering from neuronal seroid lipophyusinosis type 2, also known as CLN2 or baton disease, a rare and terminal genetic disorder that causes several recovery every day, eventually causing brain damage.
Pollock’s mother, Jori Fails, says she is “disgusting” with the decision not to renew coverage.
Fails said in a social media video, saying that there is a “complete disregard” for her nine -year -old daughter’s life, suffering from baton disease.
BC Health Minister Josi Osborne announced that after there was no change in the decision of an expert committee, Fails posted the video of the video that the drug, Brineura, is no longer helping to slow down the progression of poll disease.
Pollk’s name was known in 2019 when the province announced that it would cover the cost of a drug of $ 1 million per year, 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. He is the only person in BC with illness, who has no cure.
But Osborne said that once a patient has declined in his motor and language functions with a certain amount, Brinura no longer slows down the progress of CLN2.
Osborne says in a statement that she knows that the review process does not result in what Charlegh Pollock’s family wanted.
She says that she met the parents of Pollock last week to accept more information about baton disease, which she said that the BC was not considered by the rare pathologist committee, who had previously recommended the money for the girl’s medicine.
But the statement said that information and much more were considered by the committee, and this is the decision that the drug, Brinura, is no longer helping the girl’s disease slow down.
It says that the cost was not considered, and all the provinces rely on the clinical criteria recommended by the Canadian drug agency.
On the coast12:32Why BC stopped financing $ 1M medicine for a girl with a terminal position
After receiving the news from a Vancouver Island family, the heart is broken that his younger girl, Charlegh Pollock, is no longer treating the BC government for a rare genetic disease. Baton Disease Global Research Initiative, his Whitman broke the evidence behind the decision and why she wonders that it is a dangerous example for other children around the world.
The BC is not the only jurisdiction with the issue, the statement states that the United Kingdom announced that it would no longer provide coverage for binura for future baton disease patients due to limited evidence of its long -term effectiveness.
Osborne said in a statement, “This has been one of the most challenging issues that I have worked since becoming a health minister, and I take my role seriously to ensure that BC’s drug review processes are that are independent, evidence-based and treat people equally.”
The minister said that they have been made aware of the funds that have been picked up independently that can be used privately to buy drugs, and the island has been in touch with the health family to discuss that option.
“Moving forward, the ministry will do everything we can support and support the team, especially as Charlie The family proceeds with its decision and what they want to use the treatment that they will pay privately, “Osborne said.
