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 香蕉视频直播渃linical and scientific justification香蕉视频直播� used by the province to terminate the 10-year-old香蕉视频直播檚 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 香蕉视频直播済iven that there is no clinical evidence香蕉视频直播� Brineura would 香蕉视频直播減rovide further benefits香蕉视频直播� for Pollock.
Speaking to media July 17, Eby described the letter as 香蕉视频直播渟ignificant香蕉视频直播� and one that he is taking seriously. He also acknowledged there is a disagreement between B.C.香蕉视频直播檚 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.
香蕉视频直播淭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 香蕉视频直播� you know, whatever we can do to support them, I want to do that,香蕉视频直播� he said.
香蕉视频直播淎nd at the same time, we have this challenge of disagreement between experts.香蕉视频直播�
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香蕉视频直播檚 family pay for the drug, which mom Jori Fales says costs an estimated $33,000 per dose.
香蕉视频直播淗ow inspiring and beautiful it is to see British Columbians 香蕉视频直播� to see a community come together around Charleigh and her family to support them in this moment,香蕉视频直播� Eby told reporters.
香蕉视频直播淭hat香蕉视频直播檚 the kind of province this is, that香蕉视频直播檚 a really amazing thing to see and I香蕉视频直播檓 very grateful for that.香蕉视频直播�
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香蕉视频直播� letter Friday, Fales said, 香蕉视频直播淚 hope it香蕉视频直播檚 good news.香蕉视频直播�
To donate to the 'I stand with Charleigh' fundraiser, visit: .