BC’s health ministry has ruled that as of today, the province will no longer pay for an expensive drug for Charleigh Pollock, 9, who suffers from a rare neurological disorder.

“I empathize deeply with Charleigh's family, and my heart goes out to them,” Health Minister Josie Osborne said in a release. 

“I know this is not what Charleigh’s family wanted to hear. It is not what any single one of us wanted to hear.”

Charleigh is the only child in BC—and one of fewer than 20 in Canada—diagnosed with CLN2, or Batten disease, an extremely rare and terminal condition that causes vision loss, seizures, cognitive and physical movement issues, and a shortened life expectancy.

Since 2019, when she was three, Charleigh has been receiving Brineura—the only drug available to treat the disease for which there is no cure—through BC’s Expensive Drugs for Rare Diseases (EDRD) program. She was slated to have her last publicly funded infusion of the drug, which costs $1M per year, today. 

“Last year, it was determined that Charleigh’s condition had progressed to the point where she met the ‘discontinuation' criteria for Brineura,” the minister said.

Clinical evidence indicates that once a patient’s motor and language functions begin to slow, Brineura therapy is no longer beneficial in slowing the disease, Osborne said.

In February, Charleigh’s mother, Jori Fales, announced the province had decided to stop funding the family’s medical battle. Fales said that the treatment reduced the number of Charleigh’s seizures from “almost a hundred a day down to none.” 

Following public pressure, Osborne asked Canada’s Drug Agency (CDA) to review all of the latest research and evidence since 2019, when it made the drug coverage decision.

'No stone left unturned'

Given the extraordinary circumstances, the ministry wanted to make sure no stone was left unturned in determining whether continuing treatment would benefit Charleigh, the minister said.

“It is understandable that anyone would hold out hope that the CDA’s comprehensive review of the latest evidence in Canada and around the globe could have brought us to a different conclusion; unfortunately, that was not the case,” Osborne said.

The review found no evidence to support the ministry continuing to provide coverage for Brineura, given the advanced stage of Charleigh’s condition.

“As minister, my job is to make sure that BC’s drug review processes are rigorous, independent, and based on evidence,” Osborne said. 

“Notably, all other jurisdictions that provide coverage for Brineura have the same clinical criteria that BC uses for when to discontinue treatment, beyond which there is no evidence of benefit.”

Fales told CHEK News she would process the news before issuing a statement, likely today.

Committee of experts decides EDRD coverage

BC patients seeking coverage under EDRD  are at the mercy of recommendations from a committee of independent experts that use clinical criteria established by

CDA.

Since the review process was established in 2007, the ministry “has never provided ongoing coverage for a drug against the recommendations of clinical experts and the criteria established by Canada’s Drug Agency,” the health ministry said. 

Brineura is the brand name for the drug cerliponase alpha, which was approved by Health Canada in 2018. The province said the medication is not a life-saving treatment. It slows—but does not stop—the decline in motor and verbal functioning associated with the progression of Batten disease.