British Columbia’s minister of health says the province has reinstated coverage for an expensive drug used by a Vancouver Island girl with a rare and terminal genetic disorder.
Josie Osborne said in a statement issued Thursday that Charleigh Pollock, who recently turned 10, will once again receive coverage for Brineura. The drug treats neuronal ceroid lipofuscinosis Type 2, also known as CLN2 or Batten disease, which results in multiple seizures every day — eventually causing brain damage.
Osborne said last month the girl’s condition had reached the point where it met criteria to discontinue using the $1-million-per-year medication.
Pollock’s family and several experts and physicians had argued that Brineura was improving her quality of life.
But the health minister, quoting the findings of a medical review committee, said once a patient’s motor and language functions have declined to a certain point, Brineura no longer slows the progression of CLN2.
Osborne announced last week there would be no change to the committee’s decision that the drug is no longer working, adding that she knew the outcome of the review process was not what the girl’s family wanted.
But Osborne said Thursday that Pollock’s coverage has been reinstated and will be available to the girl “for as long as the treating physician and the family deem it appropriate.”
“I continue to strongly believe that decisions about care should be made by health experts to ensure they are based on the best available evidence,” Osborne said in a statement.
“The letter I received today from Batten disease experts confirms there is significant disagreement between health experts on Brineura, and it is not acceptable that Charleigh and her family suffer as a result of that disagreement about the use of Brineura for Batten disease.”
Osborne’s spokesperson said Pollock’s family has been told about the decision.
Pollock is one of 13 children in Canada and the only person in B.C. with the disorder, which results in multiple seizures a day.
Her name became known in 2019 when the province announced it would be covering the cost of the medication, which is given through an infusion of fluid to the brain to slow the progression of CLN2.
Funding for the drug was approved when Pollock was three years old.
