B.C. reinstates coverage of $1M drug for girl with rare condition

B.C.’s health minister announced that coverage for a costly drug has been restored for a Vancouver Island girl with a rare, incurable genetic condition.

In a statement released Thursday, Josie Osborne said Charlie Pallock, who just turned 10, will once again be covered for the drug Brineura. The drug is used to treat CLN2, or Batten disease, a rare condition that causes multiple seizures a day and damages the brain over time.

Last month, the health minister announced that the girl’s condition had reached a point where the $1 million-a-year drug was no longer effective, according to medical standards, and should be stopped. But Charlie’s family and some doctors and specialists believe the drug is still improving her quality of life.

However, the medical review board had said that Brineura no longer slowed the progression of the disease once a patient’s motor and language functions declined to a certain level.

While the health minister had said last week that the board’s decision would not be changed, on Thursday the health minister said coverage of the drug had been reinstated and would continue “for as long as the treating physician and family deems it appropriate.”

“I continue to believe that treatment decisions should be made by experts based on the best scientific evidence. However, the letter I received today from the Batten disease experts shows that there is disagreement among experts about the effectiveness of Brineura, and it is unacceptable that Charlie and his family should be harmed by this disagreement.”

Charlie Pallock is the only person in British Columbia with CLN2 and one of 13 children across Canada. His name first came to the fore in 2019, when the government announced it would pay for the incredibly expensive drug. This drug is given as a liquid injection into the brain to slow the progression of the disease.

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