Latest news with #Batten
Vancouver Sun
2 days ago
- Health
- Vancouver Sun
B.C. premier calls for overhaul of government drug approval process after 10 resignations from rare disease committee
The NDP may be on the verge of blowing up B.C.'s process for drug approvals after 10 experts resigned from the province's committee for expensive drugs after the government rejected its recommendation to top covering treatment for a 10-year-old dealing with a rare illness. Premier David Eby told reporters during an unrelated announcement on Monday in Vancouver that it is obvious the system isn't working and that there needs to be some changes to improve transparency and to better serve the public when it comes to the expensive drugs for rare diseases committee. He said he understands people's frustration that there is an independent body that makes recommendations on drug coverage but that doesn't have to defend its recommendations to the public. 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. 'The current structure of a committee that doesn't speak to the media, doesn't speak to the public, makes decisions privately, only speaks to the treating physician, even then only through the Ministry of Health, resulted in a scenario where it appeared as though what was happening was the exact opposite of what anybody wants, which is that politicians were making decisions about access to medicine,' said Eby. 'We have to figure out a way that works for the doctors and experts advising on whether or not a particular patient should receive a particular treatment, and we need to make sure that it works in a way that it's the experts that are making those decisions, and that that is taking place in a way that's transparent and understandable to the public.' Experts on the 58-member expensive drugs for rare diseases committee had recommended the government cut off funding for Brineura, the drug prescribed to Charleigh Pollock, a 10 year-old Vancouver Island girl who is the only person in the province diagnosed with the rare degenerative brain condition known as Batten disease. In their recommendation, the subcommittee dealing with Pollock's case pointed to the review of Brineura by Canada's Drug Agency, which found evidence that the drug is effective in extending the lives of patients and in reducing symptoms such as seizures was inconclusive. It also argued that Pollock was in an advanced stage of Batten disease and Brineura would no longer help her. An advisory board made up of all the chairs of the subcommittees, as well as outside specialists in health ethics, health economics and other fields, backed up the subcommittee 's recommendation and the government officially announced it was revoking coverage last month. Jori Fales, Pollock's mother, disputed the finding, stating that she had seen with her own eyes how Brineura helped improve her daughter's quality of life and that, without it, she was worried Charleigh's condition would rapidly decline. After a public outcry, advocacy from Fales and a letter from 13 American experts, Health Minister Josie Osborne reversed the decision and restored funding of the drug for Pollock on July 17. The Ministry of Health confirmed 10 members of the expensive drugs for rare diseases committee have now resigned. That's a doubling since last week when the ministry stated there had been five resignations. Dr. Sandra Sirrs, who resigned as chair of the subcommittee that made the decision in Pollock's case, told Postmedia last week that the committee process had been undermined by the NDP's political calculations and that she isn't sure if it will survive the resignations. 'To see this process dragged through the mud, I don't even know whether the process will survive this,' she said. Sirrs would not comment on Eby's latest comments. In a statement, Osborne said she has asked the ministry to review the expensive drugs for rare diseases process to 'identify opportunities for improvement.' 'We also recognize the need to increase public understanding of how the … process works. Greater transparency can help build trust and ensure that patients and families feel heard and informed as decisions are made,' said the minister. alazenby@
The Province
6 days ago
- Health
- The Province
Member of B.C. health committee who resigned over rare disease drug funding alleges political interference
Dr. Sandra Sirrs chaired an expensive drugs subcommittee until she resigned over NDP's political decision to restore funding Health Minister Josie Osborne. Photo by Arlen Redekop / PNG A member of a B.C. committee who abruptly resigned last week after the province reinstated drug funding for a girl with a rare disease is alleging unnecessary political interference. This advertisement has not loaded yet, but your article continues below. THIS CONTENT IS RESERVED FOR SUBSCRIBERS ONLY Subscribe now to read the latest news in your city and across Canada. Exclusive articles by top sports columnists Patrick Johnston, Ben Kuzma, J.J. Abrams and others. Plus, Canucks Report, Sports and Headline News newsletters and events. Unlimited online access to The Province and 15 news sites with one account. The Province ePaper, an electronic replica of the print edition to view on any device, share and comment on. Daily puzzles and comics, including the New York Times Crossword. Support local journalism. SUBSCRIBE TO UNLOCK MORE ARTICLES Subscribe now to read the latest news in your city and across Canada. Exclusive articles by top sports columnists Patrick Johnston, Ben Kuzma, J.J. Abrams and others. Plus, Canucks Report, Sports and Headline News newsletters and events. Unlimited online access to The Province and 15 news sites with one account. The Province ePaper, an electronic replica of the print edition to view on any device, share and comment on. Daily puzzles and comics, including the New York Times Crossword. Support local journalism. REGISTER / SIGN IN TO UNLOCK MORE ARTICLES Create an account or sign in to continue with your reading experience. Access articles from across Canada with one account. Share your thoughts and join the conversation in the comments. Enjoy additional articles per month. Get email updates from your favourite authors. THIS ARTICLE IS FREE TO READ REGISTER TO UNLOCK. Create an account or sign in to continue with your reading experience. Access articles from across Canada with one account Share your thoughts and join the conversation in the comments Enjoy additional articles per month Get email updates from your favourite authors Dr. Sandra Sirrs said the NDP's decision to reverse the subcommittee's recommendation to cut off coverage for the girl crossed a line, and was the first time in history that a provincial government has had a recommendation not to fund from all levels, including Canada's Drug Agency, and chose to ignore that recommendation. Sirrs said she served on the expensive drugs for rare diseases committee since its inception in 2007 and was chairwoman of a subcommittee that recommended halting drug funding for Charleigh Pollock, the 10-year-old Vancouver Island girl with Batten disease, a degenerative brain condition. Health Minister Josie Osborne said last week the reason for the reversal was a disagreement in the medical community about the effectiveness of the drug, Brineura. This advertisement has not loaded yet, but your article continues below. But Sirrs believes the decision was purely political, due to intense scrutiny that the government faced from the public about the decision to cut funding. Sirrs said the U.K. has cut off coverage of Brineura for new patients after an extensive study over six years that examined the conditions of people receiving the medication and found little long-term benefit. 'They haven't yet published what they found, they will in the fall, and they have decided to stop funding Brineura,' she said. 'What does that tell you?' Jori Fales, Charleigh's mother, has acknowledged the drug won't extend her daughter's life but said that it improves her quality of life now. Without Brineura, Fales is worried that her daughter's condition will deteriorate rapidly. Essential reading for hockey fans who eat, sleep, Canucks, repeat. By signing up you consent to receive the above newsletter from Postmedia Network Inc. Please try again This advertisement has not loaded yet, but your article continues below. Sirrs said that was taken into consideration by the committee. Sirrs also criticized Osborne for providing what she called misinformation about the government's three actions aimed at preventing future conflicts. She said Osborne's call for Ottawa to immediately implement the national strategy for drugs for rare diseases — which aims to improve access to drugs designed to treat rare illnesses — is misleading as it has already been implemented, with B.C. the first province to sign on in 2024. Brineura, she added, isn't on the list of drugs included in the strategy. Sirrs also said the province's request for the Therapeutics Initiative at the University of B.C. to review the effectiveness of Brineura is 'like asking the Little League to play with the Toronto Blue Jays' as it has much fewer resources to carry out such a review and the drug has already been comprehensively studied by Canada's Drug Agency. This advertisement has not loaded yet, but your article continues below. Lastly, the physician asked why BioMarin Pharmaceutical Inc., the company that manufactures Brineura, would accede to the government's call to review the criteria under which coverage of Brineura can be cut off. 'That is just such freaking smoke and mirrors. So first of all, the CDA had just completed a review the ministry chose to ignore,' said Sirrs. 'Second is, why on earth would BioMarin do that? Because it's expensive and it takes a lot of time.' The Health Ministry said in a statement that it wouldn't speak to individual opinions from members of the expensive drugs committee, but did say BioMarin's submissions and the Therapeutics Initiative review are outside its purview. A ministry spokesperson added that the province was the first to sign on for federal funding for rare disease medication, but the national strategy is separate and still requires additional planning. This advertisement has not loaded yet, but your article continues below. While the province can't force BioMarin to review its discontinuation criteria with Canada's Drug Agency, it will continue to push it to do so. 'Since significant debate is happening among experts, B.C. would like an independent review of all sides,' the spokesperson said. The ministry also confirmed that five members of the expensive drugs committee had quit. Sirrs accused the government and the media of dragging the committee through the mud despite it having proved effective over the years and being viewed by some other provinces as a leading method of decision-making about drug coverage. She said other jurisdictions have reached out to the committee to ask how its process works. Unlike some other provinces, where a physician can just call up the Health Ministry seeking approval for a drug, B.C. has a multi-step process that ensures patients are getting drugs that are effective. This advertisement has not loaded yet, but your article continues below. 'In other provinces, what happens is you have a clinician who phones somebody in the Ministry of Health, maybe a pharmacist or somebody else, that might be a different person every time, and there might not be consistency in those decisions,' said Sirrs. 'Here we have panels that are looking at it. So that's better and it's actually more transparent, because we've actually defined the structure.' Sirrs said each subcommittee focuses on a single condition or group of related conditions. A physician sends a form with their diagnosis, the drug they want to provide and whether the patient meets the criteria to be prescribed that medication. The physician then attends a meeting with the relevant subcommittee to discuss the case and, if all the information is correct and the subcommittee rules the medication would be beneficial to the patient, it then sends the request to the Health Ministry for final sign-off. This advertisement has not loaded yet, but your article continues below. But sometimes the cases are more complex and require further review. Then it is sent to the larger committee's advisory body which is made up of the chairs of the different subcommittees, as well as some outside physicians who have expertise in judging different medications. 'There's an ethicist, there's health economists, there's representatives from a number of the Lower Mainland pharmacies that are getting involved in the handling of some of these drugs,' she said. There are also representatives from the Ministry of Health and the Provincial Health Service Authority. 'It's a very diverse group, and they deal with really difficult situations, all of which have not been included in any of the discussions.' This advertisement has not loaded yet, but your article continues below. Sirrs said some of the key challenges are to make sure that people with rare diseases aren't being either unfairly disadvantaged or advantaged compared with people with common illnesses. She also took exception to the narrative that the decision in Pollock's case was based on the cost of the drug, roughly $800,000 a year, rather than its ability to provide Pollock with an improved quality of life. 'The media doesn't want to believe it, but why on earth would we want to stop treating this child?' said Sirrs. 'We treat many other people with million dollar drugs who are older and less photogenic, and we have been treating her for six years.' Saturday: The B.C. health care system spent about $200 million to treat 600 patients with rare diseases last year. Postmedia examines why costs continue to soar and the difficulty in deciding what to pay for and who gets treatment. Read More Vancouver Whitecaps Vancouver Canucks Soccer Hockey Vancouver Canucks
Vancouver Sun
6 days ago
- Health
- Vancouver Sun
Member of B.C. health committee who resigned over rare disease drug funding alleges political interference
A member of a B.C. committee who abruptly resigned last week after the province reinstated drug funding for a girl with a rare disease is alleging unnecessary political interference. Dr. Sandra Sirrs said the NDP's decision to reverse the subcommittee's recommendation to cut off coverage for the girl crossed a line, and was the first time in history that a provincial government has had a recommendation not to fund from all levels, including Canada's Drug Agency, and chose to ignore that recommendation. Sirrs said she served on the expensive drugs for rare diseases committee since its inception in 2007 and was chairwoman of a subcommittee that recommended halting drug funding for Charleigh Pollock, the 10-year-old Vancouver Island girl with Batten disease, a degenerative brain condition. 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. Health Minister Josie Osborne said last week the reason for the reversal was a disagreement in the medical community about the effectiveness of the drug, Brineura. But Sirrs believes the decision was purely political, due to intense scrutiny that the government faced from the public about the decision to cut funding. Sirrs said the U.K. has cut off coverage of Brineura for new patients after an extensive study over six years that examined the conditions of people receiving the medication and found little long-term benefit. 'They haven't yet published what they found, they will in the fall, and they have decided to stop funding Brineura,' she said. 'What does that tell you?' Jori Fales, Charleigh's mother, has acknowledged the drug won't extend her daughter's life but said that it improves her quality of life now. Without Brineura, Fales is worried that her daughter's condition will deteriorate rapidly. Sirrs said that was taken into consideration by the committee. Sirrs also criticized Osborne for providing what she called misinformation about the government's three actions aimed at preventing future conflicts. She said Osborne's call for Ottawa to immediately implement the national strategy for drugs for rare diseases — which aims to improve access to drugs designed to treat rare illnesses — is misleading as it has already been implemented, with B.C. the first province to sign on in 2024. Brineura, she added, isn't on the list of drugs included in the strategy. Sirrs also said the province's request for the Therapeutics Initiative at the University of B.C. to review the effectiveness of Brineura is 'like asking the Little League to play with the Toronto Blue Jays' as it has much fewer resources to carry out such a review and the drug has already been comprehensively studied by Canada's Drug Agency. Lastly, the physician asked why BioMarin Pharmaceutical Inc., the company that manufactures Brineura, would accede to the government's call to review the criteria under which coverage of Brineura can be cut off. 'That is just such freaking smoke and mirrors. So first of all, the CDA had just completed a review the ministry chose to ignore,' said Sirrs. 'Second is, why on earth would BioMarin do that? Because it's expensive and it takes a lot of time.' The Health Ministry said in a statement that it wouldn't speak to individual opinions from members of the expensive drugs committee, but did say BioMarin's submissions and the Therapeutics Initiative review are outside its purview. A ministry spokesperson added that the province was the first to sign on for federal funding for rare disease medication, but the national strategy is separate and still requires additional planning. While the province can't force BioMarin to review its discontinuation criteria with Canada's Drug Agency, it will continue to push it to do so. 'Since significant debate is happening among experts, B.C. would like an independent review of all sides,' the spokesperson said. The ministry also confirmed that five members of the expensive drugs committee had quit. Sirrs accused the government and the media of dragging the committee through the mud despite it having proved effective over the years and being viewed by some other provinces as a leading method of decision-making about drug coverage. She said other jurisdictions have reached out to the committee to ask how its process works. Unlike some other provinces, where a physician can just call up the Health Ministry seeking approval for a drug, B.C. has a multi-step process that ensures patients are getting drugs that are effective. 'In other provinces, what happens is you have a clinician who phones somebody in the Ministry of Health, maybe a pharmacist or somebody else, that might be a different person every time, and there might not be consistency in those decisions,' said Sirrs. 'Here we have panels that are looking at it. So that's better and it's actually more transparent, because we've actually defined the structure.' Sirrs said each subcommittee focuses on a single condition or group of related conditions. A physician sends a form with their diagnosis, the drug they want to provide and whether the patient meets the criteria to be prescribed that medication. The physician then attends a meeting with the relevant subcommittee to discuss the case and, if all the information is correct and the subcommittee rules the medication would be beneficial to the patient, it then sends the request to the Health Ministry for final sign-off. But sometimes the cases are more complex and require further review. Then it is sent to the larger committee's advisory body which is made up of the chairs of the different subcommittees, as well as some outside physicians who have expertise in judging different medications. 'There's an ethicist, there's health economists, there's representatives from a number of the Lower Mainland pharmacies that are getting involved in the handling of some of these drugs,' she said. There are also representatives from the Ministry of Health and the Provincial Health Service Authority. 'It's a very diverse group, and they deal with really difficult situations, all of which have not been included in any of the discussions.' Sirrs said some of the key challenges are to make sure that people with rare diseases aren't being either unfairly disadvantaged or advantaged compared with people with common illnesses. She also took exception to the narrative that the decision in Pollock's case was based on the cost of the drug, roughly $800,000 a year, rather than its ability to provide Pollock with an improved quality of life. 'The media doesn't want to believe it, but why on earth would we want to stop treating this child?' said Sirrs. 'We treat many other people with million dollar drugs who are older and less photogenic, and we have been treating her for six years.' Saturday : The B.C. health care system spent about $200 million to treat 600 patients with rare diseases last year. Postmedia examines why costs continue to soar and the difficulty in deciding what to pay for and who gets treatment.
Vancouver Sun
23-07-2025
- 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
22-07-2025
- 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.
