B.C. Health Minister Josie Osborne says the province will be reinstating coverage for a Langford girl's medication.
In a statement to media Thursday evening (July 17), Osborne said that she spoke to the family of Charleigh Pollock that evening and confirmed that she had reinstated the province's coverage for Brineura. She added the coverage will be available for the family "for as long as the treating physician and the family deem it appropriate."
âI 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.
"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.â
The province first made the decision to stop funding the medication in February âgiven that there is no clinical evidence it would provide further benefits.â
Charleigh, 10, has Batten disease. It's a rare, terminal neurodegenerative disease that has a life expectancy of around 10 to 12 years.
For six years, Charleigh has been receiving bi-weekly infusions of the drug funded by the province, costing around $800,000 a year. Brineura slows the slows the progression of Batten disease.
U.S. experts had called for the province to reinstate coverage for Charleigh, saying the drug has "demonstrably prolonged survival, slowed progression, improved seizure control and enhanced quality of life."
On Thursday, Charleigh received her first privately funded dose of Brineura after a GoFundMe raised $66,000. Charleigh's mom, Jori Fales, said a single dose costs an estimated $33,000.
Osborne is expected to provide further comment Friday.
More to come.
â With files from Ben Fenlon