“Time is neurons” for 10-year-old Langford girl Charleigh Pollock.
Living with the rare neurological disorder Batten disease, Pollock is waiting to see if the province will reverse a decision to end her funding for the drug Brineura.
Pollock’s last infusion treatment was June 19, her next would have been July 3.
“Charleigh is now without therapeutic levels of this life-sustaining enzyme in her brain, and so every day matters,” said Dr. Ineka Whiteman, head of research and medical affairs for the Batten Disease Support Research and Advocacy Foundation.
“Any brain cells that Charleigh loses from today won’t be regenerated, so every day is damaging for her right now.”
That was the "urgent" message pressed upon Health Minister Josie Osborne by Whiteman, other leading Batten disease experts and mom Jori Fales at a private meeting July 4.
At the meeting, the health minister was presented with information not included in the Canada’s Drug Agency review, which was used to support a decision by the Expensive Drugs for Rare Diseases committee (EDRD) to end Pollock’s funding for Brineura.
Fales says the minister was receptive to the information and said she would pass on the information to the EDRD, but did not commit to a timeline for next steps.
Despite remaining in limbo, Fales says she is trying to remain positive while also managing her expectations.
“I'm just hopeful that with all of the new information, the right thing will be done,” she said.
“When I asked the minister, face-to-face, if this is a final ‘no’, her reply to me was, ‘It's a no for now.’”
Also shared with the minister was information about new clinical scoring criteria – which is yet to be published – to replace the “crude and outdated” assessment system used by the province to make the decision to end Pollock’s funding.
The new criteria take into account the “ongoing benefit of the drug,” explains Whiteman.
It's a point long argued by Whiteman, Fales and Pollock’s health team, who say the 10-year-old is still benefiting from the drug – listing relief from daily seizures as one of the benefits.
“And that was the problem with the CDA review – they were extremely limited in what they included as evidential information in the review,” said Whiteman.
“They did not reach out to the experts elsewhere that have designed this scale, that have been involved in the clinical research of this drug for a decade.
“It seems very negligent that they haven't reached out to those particular experts in this case, given the gravity of the decision that they have now made, which means that a little girl's life is essentially over.”
Whiteman says the minister was told a decision is needed by Wednesday (July 9).
“So we can pivot and figure out how we're going to get Charleigh's next infusion if the government's not going to step up to the plate,” she said.
Days before the meeting with the health minister, Pollock celebrated her 10th birthday, July 2.
The family marked the day doing what Pollock loves most – art.
A video shared on social media shows mother and daughter smiling and laughing while playing with paint.
"Watching her create, hearing her laugh, seeing her light shine so brightly – it was the kind of joy our hearts so desperately needed," writes Fales in the video's caption.
"In the middle of everything, we made memories. Precious, beautiful moments that we will hold onto forever. So deeply grateful for each second we get to share with her."
