A B.C. mother says the timeline on her daughter’s lifeline has been extended again.
On Thursday, nine-year-old Charleigh Pollock was set to receive the final government-funded infusion of a drug that helps manage her rare disease. Her mother Jori Fales learned Tuesday the province will continue to cover the medication until June 28.
“We have a bit of a bridge, a safety blanket, some relief, but this fight is not over,” Fales said in an interview.
Charleigh is the only child in B.C. who has Batten disease, which is a rare neurodegenerative disorder that causes seizures, along with loss of sight, speech and motor skills.
Since she was four, the Langford girl has been receiving bi-weekly infusions of the drug Brineura, which costs roughly $1 million annually.
“She would not be with us today if we had not got funding for the infusions five-and-a-half years ago,” Fales said. “I know in my heart that if we lose the infusions, she will not be with us very much longer.”
In February, the family learned the province would stop covering the cost of the drug. The decision was based on national “discontinuation criteria” from Canada’s Drug Agency.
“This disease is so rare that Charleigh is the first Canadian patient to reach the Canada Drug Agency’s criteria for discontinuing Brineura coverage (i.e., when treatment no longer provides benefits),” a B.C. Health Ministry spokesperson said in a statement on Tuesday.
“It is intended to slow a patient’s decline in their ability to walk or talk until they reach the end-stage of the disease.”
Charleigh can no longer walk or talk, but the medication has stopped her seizures and slowed the progression of the disease, Fales said. She argues the discontinuation criteria should consider those benefits.
“Every day we have not known what the fate of our daughter is going to be,” Fales said. “I am extremely grateful and relieved that funding will continue while this process is still going on.”
The process Fales refers to is a review of the criteria, prompted by Charleigh’s case.
“We cannot presume the outcome of that review, however, to ensure coverage remains in place while we consult with the Canada Drug Agency and take into account the latest international evidence, the Ministry of Health has extended Brineura coverage for Charleigh until the end of June,” Health Minister Josie Osborne said in a statement.
The province previously granted a drug coverage extension in mid-February, following public advocacy by Charleigh’s family. It was set to expire on Thursday.
