Province to cover costs of life-saving treatment for Vancouver Island 3-year-old

A three-year-old girl with a rare disease will have her treatment covered by the B.C. government, her family confirmed Friday.

Charleigh Pollack has been in desperate need of an enzyme replacement gene therapy called Brineura, which costs around $1 million a year, to treat her extremely rare, fatal genetic disorder known as CLN2 Battens Disease.

The drug is covered in other Canadian provinces, but had not yet been approved in B.C.

Jori Fales, Charleigh’s mother, told Global News she found out earlier Friday the province had agreed to fund the drug.

Charleigh was still in surgery getting a feeding tube implanted when the family heard the news. Fales said more testing and procedures have to be done to figure out the next steps in her daughter’s treatment.

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The news comes just a day after Charleigh’s parents called on the NDP government’s independent drug review committee to approve Brineura.

In a statement, the Ministry of Health said the family learned of the news through the physician who applied for the drug coverage.

“When a decision is made by the independent review committee it is transmitted to the physician who made the application on behalf of a patient,” the ministry said. “For patient privacy reasons, we must follow the process.”

Charleigh is the first British Columbian and just the 13th Canadian to be diagnosed with the disease. There are fewer than 500 cases worldwide.

Children with the rare disease develop normally for the first few years of life. Then, as the disease progresses, the child will become blind while also losing the ability to walk, talk and swallow.

Without medication, by age six they become completely dependent on a caregiver as they are bedridden. Most children will die between six to 12 years old.

Brineura has been shown to help slow down rapid deterioration in children with the same disease. The treatment is very new, but clinical trials have shown promising results. The drug is administered bi-weekly through a portal, straight into the brain.

A GoFundMe set up by the family to raise money for Charleigh’s treatment has so far raised more than $71,000.

— With files from Richard Zussman