B.C. starts process to consider covering drug for girl’s deadly disease
Posted June 13, 2019 2:26 pm.
Last Updated June 13, 2019 10:04 pm.
This article is more than 5 years old.
VICTORIA (NEWS 1130) – As a little Victoria girl’s future hangs in the balance, the province says the process is underway to consider covering the very expensive drug needed to treat her very rare disease.
Andrew McFayden with Isaac’s Foundation says this is encouraging news and hopes the process can move quickly enough for three-year-old Charleigh.
“Right now at the rate that she’s declining if we were to wait very much longer she’s going to decline so quickly and so steeply that she’s not going to qualify for that treatment,” McFayden says.
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McFayden says that every day counts in getting the required medication for CLN2, which acts like multiple sclerosis, Alzheimer’s disease and Parkinson’s disease all in one.
“If they could tell us that they could make a decision by the end of this week that would be the best case scenario for this little girl,” says McFayden.
The health ministry says B.C.’s independent body that reviews expensive drugs for rare cases has been looking at this case.
She was diagnosed three weeks ago.
