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\nJori Fales with her daughter Charleigh Pollock July 17 after she received her first privately-funded dose of Brineura. Courtesy of Jori Fales <\/p>\n
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.<\/p>\n
Over a dozen\u00a0U.S. Batten disease clinicians and researchers have written to Premier David Eby and Health Minister Josie Osborne raising concerns about the \u201cclinical and scientific justification\u201d used by the province\u00a0to terminate the 10-year-old\u2019s access to the\u00a0enzyme replacement therapy drug, Brineura.<\/p>\n
Drawing from their\u00a0“collective and unparalleled expertise,” the experts have strongly opposed the decision and called\u00a0for a review of the current discontinuation criteria.<\/p>\n
They say the\u00a0motor-language scoring tool used by the province\u00a0was “never intended” to be used for decision-making regarding treatment discontinuation\u00a0for patients like Pollock, who live with the rare neurological disorder.<\/p>\n
“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\u00a0U.S.-based Batten Disease Centers of Excellence Program and U.S. Batten Disease Clinical Research Consortium.<\/p>\n
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.<\/p>\n
Having\u00a0cared 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\u00a0and enhanced quality of life.”<\/p>\n
Last week, Osborne said the ministry would be standing by its decision \u201cgiven that there is no clinical evidence\u201d Brineura would \u201cprovide further benefits\u201d for Pollock.<\/p>\n
Speaking to media July 17, Eby described the letter as \u201csignificant\u201d and one that he is taking seriously.\u00a0He also acknowledged there is a disagreement\u00a0between B.C.\u2019s experts and Batten experts from around the world.<\/p>\n
The health minister will be taking the letter to the Expensive Drugs for Rare Diseases committee\u00a0and will have more to say Friday (July 18), Eby said.<\/p>\n
\u201cTo 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 \u2013\u00a0you know, whatever we can do to support them, I want to do that,\u201d he said.<\/p>\n
\u201cAnd at the same time, we have this challenge of disagreement between experts.\u201d<\/p>\n
\nJori Fales with her daughter Charleigh Pollock July 17 after she received her first privately-funded dose of Brineura. Courtesy of Jori Fales
<\/p>\n
As Eby answered questions from reporters, Pollock was in hospital to receive her first privately funded dose of Brineura.<\/p>\n
The community has helped raise over $66,000 in a matter of days to help Pollock\u2019s family pay for the drug, which mom Jori Fales says costs an estimated $33,000 per dose.<\/p>\n
\u201cHow inspiring and beautiful it is to see British Columbians \u2013 to see a community come together around Charleigh and her family to support them in this moment,\u201d Eby told reporters.<\/p>\n
\u201cThat\u2019s the kind of province this is, that\u2019s a really amazing thing to see and I\u2019m very grateful for that.\u201d<\/p>\n
While the family understands the fundraiser is not a long-term solution, they hope enough money can be raised to fund the bi-weekly\u00a0infusions for as long as possible.<\/p>\n
When told the health minister would be speaking about the experts\u2019 letter Friday, Fales said, \u201cI hope it\u2019s good news.\u201d<\/p>\n