The B.C. government said Wednesday it will be pulling funding for an extremely expensive drug used by one person in the province — a young Vancouver Island girl.
Charleigh Pollock, 9, suffers from neuronal ceroid lipofuscinosis type 2, also known as CLN2 or Batten disease, a rare and terminal genetic disorder that causes multiple seizures every day, eventually causing brain damage.
Pollock’s name became known in 2019 when the province announced it would be covering the cost of a $1 million-per-year medication for her known as Brineura, which is given through an infusion of fluid to the brain to slow the progression of CLN2.
Pollock is the only person in B.C. with the disease, which has no cure.
“Expensive drugs for rare diseases add a layer of complexity to decision-making,” Health Minister Josie Osborne said in a statement on Wednesday.
However, she said, the cost of the medication has nothing to do with the recommendations made by medical experts that made this decision to stop coverage.
Funding for the drug was approved when Pollock was three years old.
Osborne said once a patient has declined in their motor and language functions by a certain amount, Brineura no longer slows the progression of CLN2.
“Last year, it was determined that Charleigh’s condition had progressed to the point where she met the discontinuation criteria for Brineura,” she said.
From there, she said the ministry undertook a review of the situation.
The province said the decision to cover drugs for patients that fall under B.C.’s Expensive Drugs for Rare Diseases program are made based on recommendations from a committee of independent experts that use clinical criteria from by Canada’s Drug Agency.
“I know this is not what Charleigh’s family wanted to hear. It’s not what any of us wanted to hear,” Osborne said.
In a Facebook post made on June 13 prior to the decision being made, Pollock’s mother Jori Fales said that after reading the Drug Agency’s report, she couldn’t see how the B.C. government would choose to stop coverage.
She said Pollock’s medical team feels continuing the medication is in her best interest.
“Anything less is simply cruel and wrong,” she wrote.
“It is not Charleigh’s time to discontinue Brineura,” Fales added. “She is still benefiting, and we implore the province to allow her to continue living and accessing this drug.”
