VICTORIA — B.C. Health Minister Josie Osborne said the decision to stop drug coverage for a girl with a rare, fatal disease was difficult, but aligns with available clinical evidence and expert recommendations.
Nine-year-old Charleigh Pollock has CLN2 Batten disease, a rare neurodegenerative disorder that causes seizures, blindness and a decline in motor function. Her mother, Jori Fales, said Charleigh is the only child in British Columbia known to have this form of the disease, and is not expected to live beyond the age of 12.
“I empathize deeply with Charleigh’s family, and my heart goes out to them,” Osborne said in a statement Wednesday, calling it “one of the most challenging files” she has worked on as health minister.
The drug Brineura, which costs about $1 million per year, is designed to slow the progression of the disease. There is no cure.
Fales said the medication reduced Charleigh’s seizures from nearly 100 per day to none, significantly improving her quality of life. The family has travelled regularly from their home in Langford to Vancouver for infusion treatments, which have been covered by the province since 2019.
The Health Ministry said clinical evidence shows Brineura is no longer effective once the disease has progressed to an advanced stage, and does not slow further decline in motor or verbal functioning.
In the fall, the ministry decided to end coverage for Charleigh’s Brineura treatment as of February, based on a recommendation from a national committee of drug therapy experts and public members. The committee, which operates under the Canadian Drug Agency, found that Charleigh’s condition had deteriorated beyond the threshold for coverage.
Charleigh’s physician disputed the decision, and an extension to June 28 was granted while the Canadian Drug Agency reviewed the research around discontinuation of Brineura.
The agency’s report, released this month, found no evidence to justify changing the existing criteria. It also noted that all other jurisdictions covering Brineura follow the same criteria for stopping treatment.
The Health Ministry said Charleigh’s last covered treatment will be on June 19.
Osborne said the decision is final. She emphasized the ministry has never provided ongoing drug coverage that contradicts clinical recommendations or the criteria set by the Canadian Drug Agency. She also stressed that the cost of the medication was not a factor.
“I know this is not what Charleigh’s family wanted to hear. It is not what any single one of us wanted to hear,” she said. “We must follow the evidence and the recommendations of medical experts, who have clinical experience with rare diseases like this.”
Fales said in an Instagram post last week that she appreciated the agency’s outreach but maintained her daughter should continue treatment.
“Our medical team agrees that continuing with therapy is in Charleigh’s best interest,” she wrote. “Anything less is simply cruel and wrong.”
A GoFundMe campaign launched in 2019 has raised nearly $140,000 as of June 18.
