Latest news with #Sirrs
CTV News
30-07-2025
- Health
- CTV News
B.C. eyes drug panel changes after Charleigh Pollock controversy
The premier is now openly talking about overhauling the secretive drug panel which cut off medication funding for a young Vancouver Island girl with a rare condition. The story of Charleigh Pollock – a 10-year-old Langford girl with a rare brain condition – has pushed B.C. Premier David Eby to vow major changes to the government drug approval process. Pollock's case sparked public outrage after provincial funding for her medication was stopped. The NDP government then reversed its decision earlier this month. Eby says there must be changes to the Expensive Drugs for Rare Diseases committee. 'We need to make sure that it works in a way that it's the experts that are making those decisions, and that is taking place in a way that's transparent and understandable to the public,' Eby said Monday. 'It did not work that way in the Charleigh case. We had two groups of experts fighting it out. One very publicly. One a secret committee within the ministry of health, speaking only through politicians. That doesn't work.' A doctor who resigned after chairing a subcommittee on Expensive Drugs for Rare Diseases spoke with CFAX 1070 on Monday. 'I have spent my whole career working in this area and I would be willing to do anything that might actually make it better,' Dr. Sandra Sirrs said during the radio interview. 'In my opinion, however, that means that the decision making has to be taken away from the ministry of health and put in the hands of the physicians.' While Dr. Sirrs disagreed with the province's decision to step in – she did agree on the need for more transparency. 'It is my personal opinion that the reason that there has been concern about transparency about the EDRD process is because the expenses are very large, and the number of people who benefit is very small,' Sirrs said. Regardless, based on Eby's comments, it seems more transparency is likely to come. 'We'll have to find a path forward,' Eby said. 'I am supportive of the health minister's decision to not let this child get caught between a battle between two experts, and I hope that the experts who are on the committee and who have left the committee are willing to work with us to identify a structure that's going to work for them.' Ten experts have resigned from the drug panel since the government's reversal, with Sirrs claiming the decision amounted to political interference.
Vancouver Sun
24-07-2025
- 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.
