A temporary reprieve for a Vancouver Island family after their terminally-ill daughter will continue to have access to life-changing medication for two more months.
Nine-year-old Charleigh Pollock has a neurological disorder called Batten disease that leaves her with recurring severe seizures and mobility loss, and will eventually cut her young life short.
Her family says a drug called Brineura has stabilized her condition and radically improved her quality of life since her 2019 diagnosis. The drug is expensive, carrying an annual bill for the twice-monthly infusions of about $1 million.
Earlier this year, the family learned the province was pulling funding for the drug but public outcry led to the government changing its position.
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Charleigh’s last infusion was originally scheduled for Thursday but now the family has been granted a short extension.
“This is our child’s life that’s being decided,” mom Jori Fales told Global News.
“There’s nothing bigger than in the world, at least to me and her family. Without this medication, she’s going to decline, deteriorate and pass away.
“This is the only defence against this cruel disease. The thought of it being taken away prematurely, it’s just inhumane.”
B.C.’s Health Minister Josie Osbourne told Global News that she cannot comment on the specifics of the case but her heart goes out to the family.
Osborne said the province is following an internal process when making decisions about drugs that is guided by medical experts.
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