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CTV News
30-07-2025
- Health
- CTV News
B.C. eyes drug panel changes after Charleigh Pollock controversy
The premier is now openly talking about overhauling the secretive drug panel which cut off medication funding for a young Vancouver Island girl with a rare condition. The story of Charleigh Pollock – a 10-year-old Langford girl with a rare brain condition – has pushed B.C. Premier David Eby to vow major changes to the government drug approval process. Pollock's case sparked public outrage after provincial funding for her medication was stopped. The NDP government then reversed its decision earlier this month. Eby says there must be changes to the Expensive Drugs for Rare Diseases committee. 'We need to make sure that it works in a way that it's the experts that are making those decisions, and that is taking place in a way that's transparent and understandable to the public,' Eby said Monday. 'It did not work that way in the Charleigh case. We had two groups of experts fighting it out. One very publicly. One a secret committee within the ministry of health, speaking only through politicians. That doesn't work.' A doctor who resigned after chairing a subcommittee on Expensive Drugs for Rare Diseases spoke with CFAX 1070 on Monday. 'I have spent my whole career working in this area and I would be willing to do anything that might actually make it better,' Dr. Sandra Sirrs said during the radio interview. 'In my opinion, however, that means that the decision making has to be taken away from the ministry of health and put in the hands of the physicians.' While Dr. Sirrs disagreed with the province's decision to step in – she did agree on the need for more transparency. 'It is my personal opinion that the reason that there has been concern about transparency about the EDRD process is because the expenses are very large, and the number of people who benefit is very small,' Sirrs said. Regardless, based on Eby's comments, it seems more transparency is likely to come. 'We'll have to find a path forward,' Eby said. 'I am supportive of the health minister's decision to not let this child get caught between a battle between two experts, and I hope that the experts who are on the committee and who have left the committee are willing to work with us to identify a structure that's going to work for them.' Ten experts have resigned from the drug panel since the government's reversal, with Sirrs claiming the decision amounted to political interference.
Global News
11-07-2025
- Health
- Global News
Drug-funding decision for B.C. girl with rare disease will not be reversed
A terminally ill nine-year-old girl on Vancouver Island will not be resuming access to a life-changing drug. B.C.'s expensive drugs for rare diseases (EDRD) expert committees and Canada's Drug Agency (CDA) have 'not revised their recommendation to discontinue coverage given that there is no clinical evidence it would provide further benefits,' the Ministry of Health said in a statement on Friday. Charleigh Pollock has a neurological disorder called Batten disease that leaves her with recurring severe seizures and mobility loss, and will eventually cut her young life short. On June 18, Charleigh's family was informed that government funding of a drug called Brineura, which her family said has stabilized her condition and radically improved her quality of life since her 2019 diagnosis. The drug is expensive, carrying an annual bill for the twice-monthly infusions of about $1 million. Story continues below advertisement Charleigh's family appealed to the B.C. Ministry of Health to reverse the decision and consider more research and speak to more experts. B.C. Health Minister Josie Osborne met with Charleigh's family a week ago. The ministry said they were joined by three Batten disease patient advocates who presented information and raised concern that two unpublished poster presentations had not been considered by the EDRD committees or CDA. Osborne said she provided this information to the Ministry of Health and its committees of physicians and clinical experts. She also said that during the meeting on Friday, concerns were also raised that the CDA did not engage two key international experts. Get weekly health news Receive the latest medical news and health information delivered to you every Sunday. Sign up for weekly health newsletter Sign Up By providing your email address, you have read and agree to Global News' Terms and Conditions and Privacy Policy They were informed that all relevant evidence was already considered in February when Charleigh's physician appealed the decision to discontinue treatment. 2:15 Langford mom devastated after province pulls funding for daughter's expensive drug In February, the ministry also asked the CDA to complete a review of all the latest research and evidence completed since 2019. Story continues below advertisement 'The Ministry can confirm that the CDA reviewed and evaluated eight separate publications by these two experts,' the Ministry of Health said in a statement. 'The Ministry also confirms that Biomarin Pharmaceutical, the manufacturer of Brineura, also submitted detailed information to the CDA, including unpublished studies, clinician statements, and materials from these same experts.' Osborne said cost is not a factor considered in these patient-level decisions. 'I know the outcome of this process is not the one anyone was hoping for, most particularly Charleigh's family,' Osborne said. 'Watching a child face daily challenges that most will never know is heartbreaking beyond words, and I believe that every British Columbian wishes for a world where no child should have to endure such suffering, and no parent should have to navigate such uncertainty. 'We must all continue to hold hope that ongoing advancements in rare disease research will one day prevent other children and families from experiencing the same suffering, and offer a better future through knowledge, treatment, and ultimately, cures.' 2:23 Family of Vancouver Island girl with rare disease hoping health ministry changes treatment funding decision In a previous interview, Charleigh's mother Jori Fales told Global News losing access to the drug would be 'catastrophic' for her daughter. Story continues below advertisement 'She will have seizures again, her organs will start shutting down, she will require suction to breathe.… It basically means she is going to suffer horrifically and be put to an earlier death,' she said. 'This life is painful enough, having to raise a terminally ill child, and now having to fight to keep her in this world — like, just let us have our life back and let us have our child for the time we have left and let her be pain-free.' A GoFundMe remains active for anyone who wants to donate to the family and Osborne said the family could use that money to pay for Brineura out of pocket.
