There could be some hope on the horizon for the family of Langford girl Charleigh Pollock, who are fighting to reverse a decision by the province to end her medication funding.
Over a dozen U.S. Batten disease clinicians and researchers have written to Premier David Eby and Health Minister Josie Osborne raising concerns about the 鈥渃linical and scientific justification鈥� used by the province to terminate the 10-year-old鈥檚 access to the enzyme replacement therapy drug, Brineura.
Drawing from their "collective and unparalleled expertise," the experts have strongly opposed the decision and called for a review of the current discontinuation criteria.
They say the motor-language scoring tool used by the province was "never intended" to be used for decision-making regarding treatment discontinuation for patients like Pollock, who live with the rare neurological disorder.
"It does not measure therapeutic response in critical domains such as seizure burden, hospitalization frequency, comfort and family-reported quality of life," said the July 16 letter from members of U.S.-based Batten Disease Centers of Excellence Program and U.S. Batten Disease Clinical Research Consortium.
It's a point made many times already by the girl's family and medical team, who have said Brineura still has many benefits for Pollock, including a life free from daily seizures.
Having cared for the majority of U.S. Batten disease patients treated with Brineura, the experts say the drug has "demonstrably prolonged survival, slowed progression, improved seizure control and enhanced quality of life."
Last week, Osborne said the ministry would be standing by its decision 鈥済iven that there is no clinical evidence鈥� Brineura would 鈥減rovide further benefits鈥� for Pollock.
Speaking to media July 17, Eby described the letter as 鈥渟ignificant鈥� and one that he is taking seriously. He also acknowledged there is a disagreement between B.C.鈥檚 experts and Batten experts from around the world.
The health minister will be taking the letter to the Expensive Drugs for Rare Diseases committee and will have more to say Friday (July 18), Eby said.
鈥淭o see the suffering of this family, the anxiety of this family, and their beautiful child that faces this horrific diagnosis and what they have yet to go through 鈥� you know, whatever we can do to support them, I want to do that,鈥� he said.
鈥淎nd at the same time, we have this challenge of disagreement between experts.鈥�
As Eby answered questions from reporters, Pollock was in hospital to receive her first privately funded dose of Brineura.
The community has helped raise over $66,000 in a matter of days to help Pollock鈥檚 family pay for the drug, which mom Jori Fales says costs an estimated $33,000 per dose.
鈥淗ow inspiring and beautiful it is to see British Columbians 鈥� to see a community come together around Charleigh and her family to support them in this moment,鈥� Eby told reporters.
鈥淭hat鈥檚 the kind of province this is, that鈥檚 a really amazing thing to see and I鈥檓 very grateful for that.鈥�
While the family understands the fundraiser is not a long-term solution, they hope enough money can be raised to fund the bi-weekly infusions for as long as possible.
When told the health minister would be speaking about the experts鈥� letter Friday, Fales said, 鈥淚 hope it鈥檚 good news.鈥�
To donate to the 'I stand with Charleigh' fundraiser, visit: .