‘David and Goliath battle’: Family of Charleigh Pollock celebrates continued treatment

The family of 10-year-old Charleigh Pollock is celebrating the B.C. governments about-face on funding treatment for the girl's Batten disease.

The family of Charleigh Pollock says, after a bitter fight with the province, their daughter’s treatment for her terminal illness will once again be publicly funded. On Friday, Charleigh’s mother Jori Fales was filled with relief and gratitude after receiving a phone call on Thursday from B.C. Minister of Health Josie Osborne.

“I’m very grateful that at the end of this six months that the right thing has been done for Charleigh,” said Fales. “(The minister) was letting our family know that funding will be restored and it will be restored for as long as our family and our medical team deem it appropriate.”

In February, the province defunded Charleigh’s expensive bi-weekly infusions for her rare Batten disease. Funding was then reinstated while an appeal process was undertaken. Then, last month, the province once again ended the funding.

“It has become abundantly clear that there is significant debate among experts about the criteria that is used in Canada to guide the use and funding of Brineura,” said Osborne.

On Thursday, Charleigh received her first crowdfunded infusion of the drug. That same day, the province received a letter penned by more than a dozen medical professionals in the Batten disease community condemning the province while speaking out about unpublished benefits of the drug.

Ultimately, that pushed the province to do an about face.

“I also sincerely apologized for everything that they (Charleigh’s family) have endured over the past few months,” said Osborne.

Charleigh’s family wasn’t alone in this fight. Doctors and advocates from around the world joined forces to convince the government that it was potentially on the wrong side of history. Dr. Ineka Whiteman is the head of research and medical affairs for the Batten Disease Research and Support Association and was one of those advocates.

“I think this was the ultimate David and Goliath battle,” said Whiteman. “We hope that a decision like this is going to precipitate similar outcomes for children around the world.”

Andrew McFadyen is the executive director and founder of the Isaac Foundation and was in Charleigh’s corner as well.

“This is a wonderful end to a very difficult journey,” said McFadyen. “I don’t think they were a family caught in the middle of a disagreement here. I don’t think so at all. I think they were a family who was on the receiving end of an unjust decision and an unjust policy.”

On Friday, the Ministry of Health confirmed that four members of B.C.’s Expensive Drugs for Rare Diseases Committee – which made the decision to defund Charleigh’s treatment – have resigned following the province’s backpeddling.

“The situation highlights the urgent need for stronger, more transparent processes, particularly around Brineura,” said Osborne.

The health minister also announced three immediate actions. First,the government has asked the Therapeutics Initiative at UBC to conduct an evidence-based assessment of Brineura. Second, Osborne has asked the drug’s maker to request a formal review of the current reimbursement criteria. And third, B.C. is calling on the Federal Government to urgently expedite the implementation of the National Strategy for Drugs and Rare Diseases, giving a consistent national approach to funding.

For the family of Charleigh Pollock, what once felt like a potential death sentence for their daughter has now turned into a lifeline. The provincial decision has been stained by politics and scientific disagreements, but for the family, this was only ever about Charleigh.

“(Now), we go back to spending all of our energy on Charleigh and just loving every single day that we have left with her,” said Fales.