Latest news with #Charleigh
Vancouver Sun
21-07-2025
- Health
- Vancouver Sun
B.C. NDPers try to cast themselves as the good guys in reversal over pricy drug
VICTORIA — NDP MLA Ravi Parmar was quick to claim a share of the credit last week for restoring drug coverage for Charleigh Pollock, the 10-year-old Langford girl ravaged by a rare terminal disease. 'From the very first day Charleigh's family reached out, my office and I have advocated for her as we do for all constituents, with respect, compassion, and in confidence,' the Langford-Highlands MLA wrote Friday on his social media account. That was not the view of Charleigh's mother, Jori Fales, who led the fight on the girl's behalf since the threat to cut off her coverage materialized back in February. A daily roundup of Opinion pieces from the Sun and beyond. By signing up you consent to receive the above newsletter from Postmedia Network Inc. A welcome email is on its way. If you don't see it, please check your junk folder. The next issue of Informed Opinion will soon be in your inbox. Please try again Interested in more newsletters? Browse here. 'He (Parmar) called once in February when we started our appeal,' Fales said on social media. 'There's been no communication since February except when I emailed Mr. Parmar June 27 asking for his urgent help. 'He responded saying he was glad I'll have the opportunity to meet with Josie Osborne,' he said, referring to a meeting with the health minister on July 4. The public record discloses little other evidence to support Parmar's claim of 'steadfast' advocacy over the six months. When he did weigh in, it was mostly to repeat the government line that decisions on funding expensive drugs for rare diseases — like Brineura, the only treatment for Charleigh's Batten disease — must be left up to the 'medical experts.' Parmar's most recent posting said 'the medical experts who reviewed this case agree: sadly, at this stage of Charleigh's disease, Brineura no longer offers a clinical benefit.' That claim was disputed by numerous experts in Batten disease, something the government finally acknowledged in restoring funding last week. Perhaps the key to understanding the victory lap Parmar took Friday was the claim that his advocacy was undertaken 'in confidence.' Publicly he echoed the premier and the health minister about not overruling the province's hand-picked medical experts. But all the while, he was fighting the good fight on Charleigh's behalf behind the scenes — or so he'd have us believe. 'The case involving Charleigh Pollock has been one of the most difficult I've faced in my many years of service to my community,' said Parmar. 'It is complex, emotional, and at its core, heartbreaking.' Almost as if he were the victim, no? Parmar's self-serving statement might placate some gullible NDP supporters. But for those wondering how the NDP picked a fight it could not win with an ailing 10-year-old, consider the widespread silence of New Democrats on an issue where they knew their government was wrong, wrong, wrong. Nor was Parmar's claim that he'd always been there for Charleigh and her family the most preposterous utterance in this affair. That nod would go to Premier David Eby, when he defended the system that led the province to cut off funding for the only medication that could mitigate the severe seizures associated with Batten disease. 'These are profound and awful decisions that have to be made by experts and physicians and not by politicians,' Eby told reporters last month. 'It doesn't make any sense for that family. I recognize that. But I also recognize that the other course is, if I can say it — is actually worse.' No, you can't say that. Not when the premier's initial deference to provincially selected experts relegated Charleigh's family to raising money over the internet to pay for the one drug that offered the little girl relief in the time she has left. As for Parmar, he may be in line for another kind of relief in his capacity as minister of forests. His mandate letter from the premier directs him to 'work toward a harvest of 45 million cubic metres per year,' from provincial forests, a 50 per cent increase over last year's harvest. The target was discounted as unlikely to be achieved, owing to permitting, regulations, Indigenous approvals and other obstacles. Finance Minister Brenda Bailey signalled her doubts in the provincial budget, forecasting a status quo timber harvest of 30 million cubic metres this year and next, followed by a reduction to 29 million in 2027. Now recent events on the trade front may provide Parmar with an out. Premier David Eby and Prime Minister Mark Carney both said last week that Canada may be able to settle the long-running softwood lumber dispute with a quota system. Canada would try to head off or reduce tariffs — currently 14.38 per cent and headed for 34.45 per cent — by capping soft lumber exports to the U.S. Parmar was quick to embrace the quota option. 'It just may be able to address this issue once and for all,' the forests minister told Mark Page of Black Press Media last week. Then again, 'the president seems to really like tariffs and, so, he may say, bugger off,' Parmar acknowledged. Still, the quota option could provide Parmar with an excuse for giving up on the 50 per cent increase in harvesting. B.C. supplies about 40 per cent of this country's lumber exports to the U.S. and would presumably have to absorb its share of any cap on exports. The cap would in turn reduce the need for any increase in harvesting. vpalmer@
Vancouver Sun
18-07-2025
- Health
- Vancouver Sun
Self-styled 'progressive B.C. government' picks fight with 10-year-old that it couldn't win
VICTORIA — B.C. Premier David Eby finally found a way this week to restore funding for drug treatment of a 10-year-old girl with a fatal genetic disease, thanks to 'a disagreement among experts.' New Democrats were deeply embarrassed by their government's mishandling of the case of Charleigh Pollock, the little girl ravaged by Batten disease. The government stopped funding Brineura, the only available drug for staving off the severe seizures associated with the disease, after a panel of experts said it no longer met the standards of effectiveness. The decision, reiterated last week, relegated Charleigh's family to fundraising on the internet, a daunting prospect considering that the drug costs $800,000 for a full year of treatment. A daily roundup of Opinion pieces from the Sun and beyond. By signing up you consent to receive the above newsletter from Postmedia Network Inc. A welcome email is on its way. If you don't see it, please check your junk folder. The next issue of Informed Opinion will soon be in your inbox. Please try again Interested in more newsletters? Browse here. Charleigh was the only child in B.C. with the disease and the only one in Canada to be cut off from public funding. That led Brad West, the Port Coquitlam mayor and longtime NDP supporter, to accuse the Eby government of taking the party from Tommy Douglas health care to GoFundMe health care. Then in a news conference Thursday — the very day that Charleigh was receiving her first privately funded Brineura infusion — the premier signalled that the New Democrats had been presented with an escape hatch. I had asked him about the case of a little boy in Alberta, the same age as Charleigh with the same disease, whose treatment was being funded by the Alberta government. Was Eby embarrassed that if Charleigh lived one province to the east, she would be fully funded instead of her family being forced to fundraise on the internet? Eby sidestepped my question. Then he dropped the news that set the stage for the government to reverse itself on funding the girl's treatment. 'We received a letter this morning from more than a dozen experts on Batten disease from the U.S., expressing their perspective on this medication — that it would continue to provide benefit for patients, including for Charleigh, that are at the stage that she's at,' said Eby. The outside experts expressed 'very serious concerns' about the outdated criteria that were applied here in Canada in judging the efficacy of the drug. They called for 'a review of the criteria' and 'strongly opposed the decision to withdraw funding for life-sustaining Brineura from Charleigh Pollock.' The premier described the letter as 'weighty,' adding 'I take it seriously. I know the minister does as well.' B.C. Health Minister Josie Osborne would be discussing the letter with members of the panel of experts, who had advised her to discontinue funding for the drug. 'We have a very challenging situation here where we have a disagreement among experts,' said the premier, suggesting the government could use the disagreement to err on the side of caution and restore funding. Sure enough, later that day came a statement from Osborne. 'I spoke to Charleigh's family earlier this evening,' she said. 'I confirmed to them that I have reinstated Charleigh's Brineura coverage and that coverage will be available to them for as long as the treating physician and the family deem it appropriate.' This time Osborne spoke to Charleigh's family in person. When the minister reaffirmed the decision to discontinue coverage last week, Charleigh's mother was advised by email, mere minutes before the news was announced to the media. 'I 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 continued. 'The letter I received today from Batten disease experts confirms there is significant disagreement between health experts on Brineura. It is not acceptable that Charleigh and her family suffer as a result of that disagreement.' In a followup Friday, Osborne held a virtual news conference, where she confirmed that she had apologized to Charleigh's family for all that they had been put through. Charleigh's mother, Jori Fales — the hero of this entire affair — told Mike Smyth of CKNW that she had accepted the apology. The minister confirmed that the decision to restore funding would include reimbursing the cost of this week's treatment, the one that was in line for private money. I asked the minister about the rumour that some members of her expert panel had threatened to resign if the decision to discontinue funding were overruled. She said she had not received any letters of resignation to that point. However, an hour later a ministry staffer phoned me to say that three of the 58 panel members had resigned. Later a fourth letter came in. I don't imagine the New Democrats will refuse to accept the resignations. Osborne has commissioned a review of all the evidence for and against Brineura. She said the province will also approach the Canada Drug Agency about its procedures. The New Democrats should also be asking how they dug themselves into this hole in political terms. It's not every day that a self-styled 'progressive government' picks a fight it can't win with an ailing 10-year-old over the one drug that can stave off the worst ravages of her disease in the time that she has left. vpalmer@
Global News
18-07-2025
- Health
- Global News
Charleigh's story: Mom says reinstating drug funding allows daughter to have dignity
Jori Fales describes Thursday as a bit of a blur. After fighting for weeks for the B.C. government to reinstate drug funding for her daughter, who has Batten disease, Health Minister Josie Osborne announced Thursday evening that funding would be reinstated. 'It's been a big day,' Fales said. 'We had Charleigh's first privately funded infusion. Everything went seamlessly and we are relieved that the medicine is now in her nervous system and then coming home this afternoon and getting the best news ever tonight personally from the minister has just given our family the biggest sense of relief. 'We're very, very happy.' Fales' 10-year-old daughter, 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. Story continues below advertisement 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, would be cut off. The drug is expensive, carrying an annual bill for the twice-monthly infusions of about $1 million. Charleigh's family appealed to the B.C. Ministry of Health to reverse the decision and consider more research and speak to more experts. 0:43 Drug funding restored for 10-year-old Charleigh Pollock following public pressure Then, a group of experts on Batten disease in the United States penned a letter to B.C.'s health minister and premier, strongly opposing the decision to withdraw funding for Charleigh. 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 'I spoke to Charleigh's family earlier this evening. I confirmed to them that I have reinstated Charleigh's Brineura coverage and that coverage will be available to them for as long as the treating physician and the family deem it appropriate,' Osborne said in a statement on Thursday. Story continues below advertisement Fales said: 'I just know that Charlie will have Brineura for as long as she needs it until the day comes that our medical team and our family decides that we no longer want to continue with them. 'This is what we've been hoping for from the very beginning, so this is incredible news.' Fales said she has been so grateful for the outpouring of support and love from people and experts around the world. 'That has kept us going,' she said. 'There has been some dark days where we were thinking, 'Can we keep doing this?' But then we would look into Charleigh's eyes and know that there's no way we can stop fighting and having the backing of so much support of our community has raised us up and kept us and beyond grateful. 'Grateful forever.' Story continues below advertisement Fales said she hopes her daughter's case sets a precedent that when it comes to these decisions, families and medical care teams should be the ones making them. 'It's already hard enough raising a child with a terminal illness, but then having someone else decide how their story goes has never sat right with us. And that was one of our driving forces to keep fighting for our girl and let her have her dignity. And let her tell her life story.'
Vancouver Sun
18-07-2025
- Health
- Vancouver Sun
B.C. backtracks and restores rare drug coverage for 10-year-old Charleigh Pollock
In a dramatic reversal of a controversial announcement last month, the B.C. Ministry of Health confirmed Thursday that it would reinstate the drug coverage for 10-year-old Charleigh Pollock, a girl on Vancouver Island who suffers from a rare neurodegenerative degeneration called Batten disease. Pollock was denied continuing coverage for treatment last month of the fatal disease , with the government citing the cost of the drug Brineura — reportedly costing $1M per year — in its decision. But pressure quickly mounted on the provincial government as it was learned the Langford native was the lone child in Canada to be denied coverage for the drug, and after a dozen experts of the disease signed a letter to Premier David Eby and Health Minister Josie Osborne, the government reversed course Thursday. The government had previously argued that the decision was guided by an expert-driven process 'that is essential to providing fair treatment to all patients.' Start your day with a roundup of B.C.-focused news and opinion. By signing up you consent to receive the above newsletter from Postmedia Network Inc. A welcome email is on its way. If you don't see it, please check your junk folder. The next issue of Sunrise will soon be in your inbox. Please try again Interested in more newsletters? Browse here. 'I spoke to Charleigh's family earlier this evening. I confirmed to them that I have reinstated Charleigh's Brineura coverage and that coverage will be available to them for as long as the treating physician and the family deem it appropriate,' Osborne said in a statement. 'I continue to strongly believe that decisions about care should be made by health experts to ensure they are based on the best available evidence. 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.' Brineura is intended to slow — but cannot stop — the decline in patients' ability to walk and talk until they reach the end stage of the disease. After funding was cut off, a crowdfunding effort raised $69,892 for Pollock , allowing her to receive her first infusion on Thursday at Victoria General Hospital.
Global News
18-07-2025
- Health
- Global News
Charleigh's case: Disease experts ‘strongly oppose' move to cut rare drug funding
A group of experts on Batten disease in the United States has penned a letter to B.C.'s health minister and premier, strongly opposing the decision to withdraw funding for 10-year-old Charleigh Pollock. The letter is signed by the Clinical Directors from the U.S. Batten Disease Clinical Centers of Excellence and Batten Disease Clinical Research Consortium and asks the B.C. government to review the current discontinuation criteria. 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. However, the decision was not reversed. 2:00 Review of Charleigh Pollock's case finished The doctors and researchers who wrote the letter say their international colleagues and collaborators Angela Schulz MD and Miriam Nickel MD in Germany were instrumental in developing the clinical outcome measures used to track disease progression in CLN2 disease, which is a type of Batten disease. 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 'Drawing from our collective and unparalleled expertise in CLN2 disease, we strongly oppose the decision to withdraw funding for life-sustaining ERT from Charleigh Pollock and call for a review of the current discontinuation criteria,' the letter reads. Prior to 2017, the late-infantile form of CLN2 disease was universally fatal, however, the introduction of intracerebroventricular ERT, which is the medication Pollock was given, 'fundamentally altered the disease trajectory.' Story continues below advertisement The experts said the treatment 'has demonstrably prolonged survival, slowed progression, improved seizure control, and enhanced quality of life.' The B.C. government has always maintained that the decision to stop funding Charliegh's medication was never about money but a panel of experts decided the drug was not helping Charleigh anymore. 'This is a really awful case,' B.C. Premier David Eby said on Thursday. 'This is a beautiful child and a family facing a horrific diagnosis. Medical experts are disagreeing about the best course of action. 'We received a letter this morning from slightly more than a dozen experts in Batten disease from the United States who wrote to the (health) minister and I expressing that their perspective on this medication is that it would continue to provide benefit for patients, including for Charleigh, that are at the stage that she's at.' Eby said Health Minister Josie Osborne will likely have more to say on the matter on Friday. 2:15 Langford mom devastated after province pulls funding for daughter's expensive drug The letter from experts said they are concerned by the clinical and scientific justification used by B.C.'s ministry of health to terminate treatment for Charleigh. Story continues below advertisement Andrew McFadyen, executive director of the Issac Foundation in Toronto, which is a patient advocacy organization dedicated to supporting individuals living with rare diseases, was one of the experts who signed the letter to Eby and Osborne. He said they provided the same information to Osborne when they met with her a few weeks ago and he was appalled the government stopped funding the drug in the first place. 'So while this may not be overly new information, I think the idea that every single Batten disease expert in the world has signed on to say, we're unified, we agree, we're imploring you to change this decision, but we're also imploring you to look at developing new criteria so that this situation doesn't have to take place for other children across the country, but also around the world, like it did here now,' McFayden added.
