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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. 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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
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@
CBC
22-07-2025
- Health
- CBC
More disruptions to maternity services possible across B.C., health minister says
B.C.'s health minister says more disruptions could be coming to maternity services across the province after people with high-risk pregnancies in Prince George were warned they could be sent out of the city for care starting in August. Prince George is the largest service centre in northern B.C. and often provides health-care services for the entire region. But in a notice to patients on Monday, Northern Health said a shortage of obstetrical specialists could limit care options available to expecting parents in the city. "There will be occasions where we may need to transfer you (at no cost to you) to another centre in the province to ensure the safety of you and your baby," the health authority said. "The situation... is constantly evolving, and we are working to find coverage for any upcoming service gaps." Prince George is the latest in a wave of maternity care disruptions hitting communities across B.C. In May, doctors in Kelowna warned maternity services were on the verge of collapse amid a shortage of family physicians. Earlier this year, Dawason Creek's only obstetrician-gynecologist left the community, forcing high-risk patients to travel an hour north to Fort St. John for care. Despite recent efforts by the province to train and recruit more workers, Health Minister Josie Osborne says challenges to fill staff shortages remain. "I think there is a possibility that we will see that kind of strain on services elsewhere," Osborne said at an unrelated news conference on Monday. "The health authorities, I know, are doing everything that they can to alleviate that strain, to work with physicians and care teams to ensure that services are there for people." Osborne acknowledged the anxiety the disruptions are causing families, and said that no one in need of care would be turned away when a birth is imminent. "We'll do everything we can to support people in that incredible time of need," Osborne said. The province says it received almost 780 job applications from qualified American health professionals as part of its recruitment campaign in the U.S. Of the applications received between May and June, 181 were for Interior Health, 154 for Fraser Health, 121 for Vancouver Coastal Health, 112 for Island Health, and 63 for Northern Health. Osborne says more than 2,250 doctors, nurses and other health professionals have signed up for webinars and expressed interest in working in B.C. since the recruitment drive began in March.
CTV News
18-07-2025
- Health
- CTV News
B.C. health minister apologizes to family of 10-year-old girl with rare disease
Charleigh Pollock and her mother Jari Fales. Charleigh's parents have been told her expensive treatment for a rare neurological disease will no longer be funded by the B.C. government. British Columbia Health Minister Josie Osborne is 'sincerely apologizing' to the family of a 10-year-old girl on Vancouver Island with a rare disease after a public fight over the province's decision to cut off paying for her medication. Osborne issued the apology at a news conference after her government announced it would restore the drug funding for Charleigh Pollock, the only person in B.C. with Batten Disease. The province cut off funding last month for the drug called Brineura — which costs about $1 million per year — citing an expert committee, which said the drug was no longer helping to slow the progress of the girl's disease. But Osborne personally called Pollock's mother Jori Foles Thursday to tell her that government would restore funding, citing another group of experts. Osborne says Pollock should not be suffering because of 'significant disagreement' among experts. Pollock's mother Jori Fales celebrated in a video posted on social media, saying the 'nightmare is over,' adding she is 'beyond grateful' to supporters who backed her cause to have the funding restored. This report by Wolfgang Depner, The Canadian Press, was first published July 18, 2025.
Vancouver Sun
18-07-2025
- Health
- Vancouver Sun
B.C. Health Ministry restores drug funding for girl with rare disease
British Columbia's Health Minister Josie Osborne says she has reinstated funding for a nine-year-old girl who has an extremely rare disease. Charleigh Pollock has Batten disease, and the drug Brineura costs around $1 million a year. Osborne says she spoke with the girl's family tonight and told them that the funding would be available 'for as long as the treating physician and the family deem it appropriate.' Osborne says she believes health professionals should make decisions about care, and a letter she received from Batten disease experts in the United States detailed a 'significant disagreement.' 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 minister says the Vancouver Island girl and her family should not suffer because of the disagreement over the drug. The government had cut off the funding last month, saying an expert committee determined that the drug was no longer helping to slow the progress of the girl's disease. Pollock is the only person in B.C. to have the disease and one of about 20 in Canada. This report by The Canadian Press was first published July 17, 2025. Our website is the place for the latest breaking news, exclusive scoops, longreads and provocative commentary. Please bookmark and sign up for our daily newsletter, Posted, here .
