The clock has been reset on a sombre countdown, which could signal the end of a terminally ill Langford girl’s access to life-sustaining treatment.
Provincial funding for nine-year-old Charleigh Pollock’s bi-weekly treatment for the rare genetic disorder Batten disease will now continue until the end of June, while the Ministry of Health continues its review of her case.
News of the funding extension came two days before Pollock’s next round of treatment on March 27, which mom Jori Fales had feared would be her daughter’s last.
“It feels like temporary relief,” said Fales, speaking to Goldstream Gazette. “I'm extremely grateful that her last infusion is not a day and a half from now, but knowing that we still don't know what the final outcome is weighs very heavy on our hearts.”
The nine-year-old’s family was first told in early February that provincial funding for the drug Bineura was being pulled, with Feb. 27 set to be the final date for treatment.
Following public backlash about the decision, an urgent review of Pollock’s case was announced by the Ministry of Health, which extended funding until the end of March.
Tuesday’s (March 25) news that her daughter will continue to receive treatment until the end of June is the first time the ministry has communicated with her since February, says Fales.
“We have had zero updates since we started this,” she said. “As of just yesterday (March 24), I was crying my eyes out, thinking that the next infusion was the last.
“It has felt like – it feels like a very horrific countdown every day, that has been on our minds before we go to sleep.”
While waiting in limbo for news has been “agony,” Fales says she and her family are grateful for the funding extension and will try to maintain a positive attitude in the coming weeks and months.
“At the end of the day, we just want the right outcome to happen … waiting longer, it’s mixed emotions for sure,” she said. “But if that's what it takes to end up with the right answer, what else can we do?
“I am just very relieved that Charleigh will not suffer the consequences while they [Ministry of Health] are still continuing their discussions.”
The decision by the province to pull funding for the drug Bineura was a confusing one for Fales and her daughter’s medical team, who believed the treatment had “dramatically slowed down” the progression of the genetic disorder Batten disease.
In February, Health Minister Josie Osborne explained the decision to withdraw funding under the Expensive Drugs for Rare Diseases program was made by medical experts based on clinical evidence and recommendations from Canada’s Drug Agency.
According to Fales, the clinical criteria used for the approval of Brineura is outdated and "needs to be updated immediately.” Something that she hopes will be considered as part of the review.
But while her daughter’s medical team has “done everything they can to fight Charleigh’s right to keep her medication,” Fales says she is “very much in the dark” about what the ministry review is considering.
“Honestly, we don't know anything,” she says. “Which is alarming because I’m unsure what decisions are being made and on what grounds. This is Charleigh’s life in the balance right now.”
Osborne says the review will consider all the facts of Pollock’s case and will determine whether “continuing treatment may still have quality-of-life benefits” for her.
“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,” she said.
As Fales resets the clock on the countdown to a June decision by the ministry, she says life continues as normal for her daughter.
“She just has her happy days – as much as she probably picks up on our stress, we try not to do that in front of her, so she's great.
“She's in a spring break camp this week, enjoying herself.”
