Latest news with #Batten
Vancouver Sun
a day ago
- Health
- Vancouver Sun
Letters to The Vancouver Sun: Shame on government for denying Charleigh Pollock's treatment
Re: NDP relegates Charleigh Pollock to the mercies of GoFundMe Re: B.C. NDP admits Charleigh Pollock is the only kid in Canada to be denied funding for rare disease Despite heartfelt, urgent and repeated pleas by Jori Fales, Charleigh's mother, to resume the treatment that had enhanced her daughter's quality of life from the devastating consequences of Batten disease, it was two recent columns by Vaughn Palmer that likely provided the impetus for the B.C. government to finally come to its senses and reinstate treatment with the quality-of-life-prolonging drug Brineura. Shame on Health Minister Josie Osborne and Premier David Eby for failing to listen to a mother's caring and articulate pleas to enhance the quality of life (and perhaps prolong the length of her remaining months) for her precious 10-year-old daughter. 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. As a longtime NDP voter, I will rethink that decision when I next head to the polls. Susan R. Harris, Vancouver In July, Health Minister Josie Osborne proudly announced that nearly 800 U.S. health-care professionals had expressed interest in relocating to B.C. as part of the province's recruitment strategy. While many Canadians weary of MAGA politics might quietly enjoy this reversal of brain drain, we should ask ourselves: Is this sustainable? Recruiting foreign-trained pros may provide temporary relief to B.C.'s overburdened health-care system, but it's no substitute for a serious, long-term plan. For decades, successive governments — this one included — have failed to train enough physicians, nurses, medical imaging specialists and other vital health-care workers to meet the needs of our growing and aging population. It takes years to educate and train a competent health-care professional. Yet we continue to rely on stopgap measures, avoiding the hard but necessary work of expanding our own capacity. A better announcement would have been the creation of 800 new training seats across B.C.'s universities and colleges — not simply the successful 'poaching' of talent from other jurisdictions. The planned medical school at Simon Fraser University is a welcome step but falls well short of what is required. We need to significantly expand not just medical training, but programs in nursing and allied health professions. In many areas, we must double or even triple current capacity to address existing and future shortages. B.C. has long drawn health-care workers from Europe and developing nations — a practice that is ethically questionable and logistically short-sighted. We must stop outsourcing our responsibility to others. As we've learned in other sectors, we need to become self-reliant and plan for the future, not depend on others to do our heavy lifting. Continuing to neglect local training isn't just bad policy, it's also unsustainable. It's time we invest in building a health-care workforce at home. Tom Holland, Surrey Letters to the editor should be sent to sunletters@
Vancouver Sun
2 days ago
- Health
- Vancouver Sun
Advocate calls for changes to how B.C. decides to fund drugs for rare diseases
The co-chair of the evaluation committee for Canada's strategy for rare diseases is calling out B.C. for having the least-transparent process in the country when it comes to funding medications for rare diseases. Durhane Wong-Rieger, the CEO of the Canadian Organization for Rare Disorders and chair of Rare Diseases International, says B.C. is also the only jurisdiction that puts the burden on patients and their care teams to prove they need access to certain drugs. She says the province has not revealed who is on its expensive drugs for rare diseases committee, run through the Provincial Health Services Authority. 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. Wong-Rieger says she didn't even know the committee had 58 members until the government disclosed Friday that four had resigned as a result of the province's decision to restore funding of the drug Brineura for Charleigh Pollock, a 10 year-old Vancouver Island girl who is the only B.C. resident struggling with the incredibly rare degenerative brain condition known as Batten disease. Each fortnightly dose of Brineura costs $33,000, bringing the annual total to about $800,000 a patient, but there is no way to tell whether the cost factored into the decision, according to Wong-Rieger. 'We know of no drug process that is as opaque as the B.C. government's,' she said Monday. 'We have no idea who the members of the committee are, as their committee meetings are held in secrecy. We have no idea of who sits at the table, who's there.' Wong-Rieger says the normal process for funding drug coverage is for Canada's Drug Agency to do an initial review of the medication to decide whether it is safe and effective before approving it. Once the drug has received federal approval, the agency talks to all the provinces to determine an appropriate price for that medication and each province then decides whether to fund coverage of the drug and when they are going to make it available. For example, Alberta participates in the common drug review run through Canada's Drug Agency and then decides to accept or reject drugs based on the recommendation of either Canada's expert drug advisory committee or Alberta's expert committee on drug evaluation and therapeutics. While B.C., like Alberta, has its own review panel for drugs, B.C. also has a separate committee for approving expensive drugs that treat rare conditions, the expensive drugs for rare diseases committee, which was formed in 2007 and covers 35 drugs ranging in price from $239,000 to $1.315 million a year. This committee, says Wong-Rieger, requires patients or their medical team to prove why the province should fund coverage for the drug under the medical services plan. It is this committee that recommended the province end coverage of Brineura for Charleigh Pollock, concluding she had reached the point of the illness where the drug would no longer be effective. The decision came despite evidence submitted by medical experts and her care team that suggested Brineura was still alleviating Pollock's symptoms and improving her quality of life. A previous study by Canada's Drug Agency on Brineura had ruled there wasn't enough evidence to determine whether the drug meaningfully helps to alleviate symptoms of Batten disease, such as severe seizures. Jori Fales, Pollock's mother, says the B.C. committee came to this decision without ever meeting Charleigh and that only her family doctor, and not her family, was allowed to speak to members of the committee. 'The (committee) made their decision without meeting Charleigh,' said Fales. 'We weren't given an option to speak to them personally.' Wong-Rieger says that even if Fales had been allowed to speak before the committee, the lack of transparency around what happens in those meetings means it is hard for patients to tell whether the committee misunderstood something or why they came to the decision they did. She said the province should also have plenty of money to cover drugs like Brineura after Ottawa provided it with $194 million to fund rare diseases as part of the $1.5 billion national strategy for drugs for rare diseases unveiled in 2023, however there is no evidence the government has spent any of it and the lack of conditions imposed by Ottawa meant the B.C. government could just move it to general revenue. The Ministry of Health said in a statement that Wong-Rieger's comments that the burden is on patients and their care teams to prove they need access to certain drugs is 'completely incorrect' and that the expensive drugs for rare diseases committee is only used for 'exceptional requests.' The ministry added that there have only been the four resignations from the committee and that the national strategy for drugs for rare diseases clearly lays out requirements for the province to spend the $194 million on drugs for rare diseases as well as screening and diagnostics. It said the funding has so far allowed it to cover seven more medications. Health Minister Josie Osborne explained the reversal as the result of a letter she received from 13 experts through the U.S.-based Batten Disease Centers of Excellence and U.S. Batten Disease Clinical Research Consortium that provided information her ministry didn't previously possess. 'It has become abundantly clear that there is significant debate among experts about the criteria that is used in Canada to guide the use and funding of Brineura,' said the minister, who has requested the Therapeutics Initiative at UBC conduct an assessment of Brineura and asked the drug maker to reassess how reimbursement occurs for the drug. 'Charleigh's family should not have to be caught in the middle of a debate among experts.' Osborne has also asked the federal government to move faster in implementing the national strategy on rare diseases, something Wong-Rieger says she welcomes but warns will require more transparency from the province. She said B.C. will need to open its books around drug funding if the program is going to be able to evaluate their progress in following the strategy. 'I will say this, I sit as co-chair of the evaluation committee for this national strategy. We are creating an evaluation framework around what the outcomes have to be. We're going to start to evaluate how they actually meet those objectives. What are they doing with those moneys?' said Wong-Rieger.
Vancouver Sun
3 days ago
- 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
5 days ago
- 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
6 days ago
- 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.'
