Four people have resigned from a B.C. health committee following Health Minister Josie Osborne's decision to reinstate provincial funding for a Langford girl's medication.
B.C.'s Ministry of Health confirmed Friday (July 18) that four people resigned from the Provincial Health Services Authority's Expensive Drugs for Rare Diseases committee after Osborne announced she would . The ministry said there are approximately 50 members on the committee, which includes subcommittees.
The committee, , supports and coordinates the review of patient cases by clinician expert panels and its advisory committee; manages drug supply logistics; tracks and reviews drug spending; and monitors and reports on the Expensive Drugs for Rare Diseases processes to support continuous quality improvement.
During a media availability Friday by Osborne about her decision to reinstate the medication funding, the health minister was asked if anyone had resigned from the committee or if she had received any letters of resignation.
"I have not received a letter of resignation," she said.
The health minister said she knows it has been "difficult for some of the individuals" and she had spoken to members of the committee. She added their opinions are "greatly valued."
"I certainly have benefited greatly from the conversations and the dialogue that I've had with them in thinking through this and really wrestling with this issue, and in coming to this understanding that there is a significant enough disagreement between different professionals and different experts in these fields, that it needs to be resolved in a different way."
Osborne, , announced the province would be reinstating coverage for 10-year-old Charleigh Pollock's Brineura medication. She said she had spoken to Charleigh's family adding the coverage would be available "for as long as the treating physician and the family deem it appropriate."
The province first made the decision to stop funding the medication in February 鈥済iven that there is no clinical evidence it would provide further benefits.鈥�
Charleigh, 10, has Batten disease. It's a rare, terminal neurodegenerative disease that has a life expectancy of about 10 to 12 years.
For six years, Charleigh has been receiving bi-weekly infusions of the drug funded by the province, costing around $800,000 a year. Brineura slows the progression of Batten disease.
A review by Canada's Drug Agency found 鈥渋nsufficient evidence鈥� to draw firm conclusions about the drug's impact on quality of life, seizure control and mortality outcomes. It added that Canada's Drug Agency had found no new evidence to justify changing the discontinuation criteria for Brineura, which were first established in 2019.
The Provincial Health Services Authority's Expensive Drugs for Rare Diseases committee then stood by an assessment that found Charleigh's motor-language skills had declined to a point where she now meets the discontinuation criteria.
U.S. experts had called for the province to reinstate coverage for Charleigh, saying the drug has "demonstrably prolonged survival, slowed progression, improved seizure control and enhanced quality of life."
It was after that Osborne announced the reversal.
鈥淚 continue to strongly believe that decisions about care should be made by health experts to ensure they are based on the best available evidence," Osborne said.
"The letter I received today from Batten disease experts confirms there is significant disagreement between health experts on Brineura, and it is not acceptable that Charleigh and her family suffer as a result of that disagreement about the use of Brineura for Batten Disease.鈥�
Osborne said Friday that Charleigh's family should not have to be caught in the middle of a debate among experts, and apologized.
"Charleigh's the only child in British Columbia with Batten disease receiving Brineura, but there are children across Canada who are suffering from this disease, and the situation highlights the urgent need for stronger, more transparent processes, particularly around Brineura."
Osborne announced three "immediate" actions aimed at preventing other children and families with Batten disease from experiencing the same uncertainty.
First, she asked the Therapeutics Initiative, an independent body based at UBC, to conduct a thorough evidence based assessment of Brineura. Osborne said the findings will help guide both clinical practice and public policy.
She said the second action would be "urging" BioMarin Pharmaceuticals, the company that manufactures Brineura, to promptly request a formal review by Canada's Drug Agency of the current reimbursement criteria.
"If new evidence supports changing these guidelines, it must be submitted swiftly."
The third action, she said, was calling on the federal government to "urgently expedite implementation of the national strategy for drugs for rare diseases.
鈥� With files from Ben Fenlon
