The family of terminally ill Langford girl Charleigh Pollock are readying themselves to meet with Health Minister Josie Osborne.
Mom Jori Fales is hoping to get answers to questions about why the province is standing firm on its decision to end funding for her daughter鈥檚 access to the drug Brineura, which slows the progression of the rare neurological disorder Batten disease.
She has continually argued that her daughter is still benefiting from the bi-weekly infusion treatment. But the province says Pollock鈥檚 motor-language skills have declined to a point where she now meets the discontinuation criteria.
The meeting on Friday (July 4) has been arranged at Fales' request, who says she had to push for an in-person meeting after she was initially offered a telephone call with the minister.
Because of this, Fales says she is managing her expectations about the outcome of the meeting.
鈥淚'm just hopeful to be heard fairly and given the time to discuss it further,鈥� she said.
鈥淥bviously, I want a change in the decision, but I'm worried that it's just going to be them accepting my meeting to kind of just give their condolences to our family."
Fales will have support at the meeting from Lori Brown, president of the Canadian Batten Disease Support and Research Association, and Andrew McFadyen of the Issac Foundation, who helped the government originally bring Brineura into B.C.
Flying in from New Zealand especially for the meeting is Dr. Ineka Whiteman, head of research and medical affairs for the Batten Disease Support Research and Advocacy Foundation.
Speaking to Goldstream Gazette in June, Whiteman said the criteria used by B.C. to assess a patient鈥檚 eligibility for Brineura are outdated and inadequate.
She also noted that the motor-language scoring tool 鈥� a crucial deciding factor in Pollock鈥檚 case 鈥� was developed 12 years ago during the drug鈥檚 original clinical trial.
鈥淏ut now it鈥檚 2025, we have over a decade of lived experience and real-world experience with Brineura,鈥� she said, listing seizure control, extended length of life and cognitive engagement among the many benefits. 鈥淚t's doing so much more than just maintaining motor language skills.鈥�
It鈥檚 information Fales hopes to highlight again at the meeting with Osborne.
鈥淚 want to know if the minister herself is even aware of the extra evidence, expertise, all the information,鈥� she said.
Pollock will also join her mom for the meeting.
鈥淪o that someone (from the ministry) is actually meeting her in person for the first time,鈥� said Fales.
After six years receiving Brineura, Pollock鈥檚 last infusion treatment was June 19 鈥� her next would have been July 3.
Without treatment, it is expected that her condition will decline. But as Pollock is believed to be the first patient globally to be taken off the drug for reasons outside her family or physician鈥檚 control, the timeline for her decline has been described as "uncharted territory."
鈥淪o every day that goes by, it's Charleigh that's losing,鈥� said Fales.
Ahead of Friday鈥檚 meeting, Pollock鈥檚 family has another important upcoming date 鈥� her 10th birthday on July 2.
鈥淓ven under this extremely dark cloud, we're still going to put all of our focus on her,鈥� said Fales.
鈥淚t鈥檚 amazing she's still here with us, and again, we know that's because of her infusions. So it's going to be a happy and sad day 鈥� a mixture of feelings for sure.鈥�