The British Columbia Ministry of Health has determined that a nine-year-old girl in terminal phase will no longer continue to have a drug that changes life.
Charleigh Pollock has a neurological disorder called Cassette This leaves him severe crises and a recurring loss of mobility, and will end up short-circuiting his young life.
His mother, Jori Fales, was informed on Wednesday that the last treatment funded by the government of his daughter will be on Thursday.
Fales says that a drug called Brineura has stabilized the state of Charleigh and radically improved its quality of life since its diagnosis of 2019. The drug is expensive, transporting an annual bill for infusions of twice months of about $ 1 million.
By stifling tears, the Minister of Health of British Columbia, Josie Osborne, said on Wednesday at a press conference that “Charleigh had met the judgment criteria”.
She said that there is no cure for Charleigh’s state and that Brineura is not an anti-size drug.
She added that clinical evidence has shown that the drug no longer benefits Charleigh.
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Osborne said that the case of Charleigh is one of the most difficult on which she has worked in her career as Minister of Health.
“I want to recognize Charleigh and his family, who live what is unimaginable for most of us – the incredibly heavy and emotional assessment of an extremely rare and incurable disease,” said Osborne.
“Their trip – like all families with a child diagnosed with a rare disease – is filled with uncertainty, fear and endless plea.
“I sympathize deeply with Charleigh’s family, and my heart goes towards them.”
Earlier this year, the expensive medication committee for rare diseases in the province determined that the drug no longer met the financing criteria in this case. Minister of Health Josie Osborne intervened and requested an additional examination, extending the drug coverage for an additional four months.
The Canadian drug agency has now examined Brineura and on the basis of this exam, the province determined that the drug was no longer eligible for funding.
Charleigh is one of the under 20 children in Canada with this rare condition. She is the only patient in British Columbia and was diagnosed only a few weeks before her fourth anniversary.
The British Columbia Government has never canceled the independent committee for rare drugs on a drug financing decision.
The United Kingdom recently decided to stop publicly funding drugs in all cases. In British Columbia, there is still funding available in certain circumstances and is examined on an individual basis.
Fales told Global News on Wednesday that she is dealing with news and is expected to publish a statement on Thursday.
In a previous interview, Fales said The world news losing access to the drug would be “catastrophic” For his daughter.
“She will have crises again, her organs will start to close, she will need aspiration to breathe … It essentially means that she will suffer horribly and be put to death earlier,” she said.
“This life is quite painful, having to raise a final child, and now have to fight to keep it in this world – like, allow us to take back our life and leave us our child for the time we have left and leave it without pain.”
A GoFundme remains active For all those who wish to donate to the family.
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