Latest news with #DrugAgency
Cision Canada
5 days ago
- Business
- Cision Canada
Canada's Drug Agency Welcomes Distinguished Healthcare Leader Dr. Robert Bell as New Board Chair
OTTAWA, ON, July 15, 2025 /CNW/ - Canada's Drug Agency announces today that Dr. Robert (Bob) Bell, a distinguished healthcare leader, has been elected as the new Chair of the Board of Directors effective immediately. The news was announced today at the organization's annual general meeting of members. A former orthopedic oncology surgeon, Dr. Bell is a fellow of the Royal College of Physicians and Surgeons of Canada and has received numerous awards for his contributions to healthcare. Dr. Bell is currently the chair of the board at the Health Data Research Network Canada and a member of the Governing Council at the Canadian Institute of Health Research. Previously, Dr. Bell was the president and CEO of the University Health Network, followed by serving in the role of Ontario's deputy minister of health. "Canada's Drug Agency is at an evolution point in its history, with a new name and expanded responsibilities that will help our healthcare systems keep pace with rapid advances in drugs and health technologies. They're leading the charge, and I look forward to continuing to shape change together," says Dr. Bell, incoming Chair of the Board of Directors at Canada's Drug Agency. "Dr. Bell brings immense wisdom and expertise from his decades-long career where he's made significant contributions to the healthcare sector in Canada," says Suzanne McGurn, President and CEO, Canada's Drug Agency. "As board chair, he will play a key role as we implement and achieve the aspirations set out in our new five-year strategic plan." Canada's Drug Agency is grateful for the leadership and commitment of outgoing Board Chair, David Agnew, the President of Seneca College, who has served as board chair for the past seven years. David's diverse experience, knowledge of corporate governance, and passion for evidence-based policy ensured effective board leadership through several strategic plans, the COVID-19 pandemic, and as Canada's Drug Agency (CDA-AMC) was built from the Canadian Agency for Drugs and Technologies in Health (CADTH) in 2024. To learn more about Dr. Bell's election as the new Board Chair of Canada's Drug Agency, visit our website. Canada's Drug Agency (CDA-AMC) is a pan-Canadian health organization. Created and funded by Canada's federal, provincial, and territorial governments, we're responsible for driving better coordination, alignment, and public value within Canada's drug and health technology landscape. We provide Canada's health system leaders with independent evidence and advice so they can make informed drug, health technology, and health system decisions, and we collaborate with national and international partners to enhance our collective impact.
Globe and Mail
11-07-2025
- Health
- Globe and Mail
Health minister upholds decision to deny rare-disease funds for B.C. girl
A family from Langford, B.C., hoping to extend the life of their little girl who has a rare disease has been rejected again for coverage of medication that costs about $1-million a year. Health Minister Josie Osborne says in a statement that she knows the outcome of the review process is not what the family of Charleigh Pollock wanted. Osborne says she met with Pollock's parents last week to accept further information about Batten disease that they said hadn't been considered by the B.C. rare diseases expert committee, which first recommended funding for the girl's medicine be stopped. But the statement says that information and much more was considered by the committee and the decision remains that the drug Brineura is no longer helping slow the progress of the girl's disease. It says that cost was not considered and all provinces rely on clinical criteria recommended by Canada's Drug Agency. B.C. is not the only jurisdiction grappling with the issue, the statement says, noting that the United Kingdom announced it would no longer provide coverage for Brineura for future Batten disease patients due to the limited evidence of its long-term effectiveness. 'This has been one of the most challenging issues that I have worked on since becoming health minister, and I take seriously my role to ensure that B.C. has drug review processes that are independent, evidence-based and treat people equally,' Osborne says in the statement.
Winnipeg Free Press
11-07-2025
- Health
- Winnipeg Free Press
Health minister says rare-disease funds denied again for B.C. girl Charleigh Pollock
VICTORIA – A family from Langford, B.C., hoping to extend the life of their little girl who has a rare disease has been rejected again for coverage of medication that costs about $1 million a year. Health Minister Josie Osborne says in a statement that she knows the outcome of the review process is not what the family of Charleigh Pollock wanted. Osborne says she met with Pollock's parents last week to accept further information about Batten disease that they said hadn't been considered by the B.C. rare diseases expert committee, which first recommended funding for the girl's medicine be stopped. But the statement says that information and much more was considered by the committee and the decision remains that the drug Brineura is no longer helping slow the progress of the girl's disease. It says that cost was not considered and all provinces rely on clinical criteria recommended by Canada's Drug Agency. B.C. is not the only jurisdiction grappling with the issue, the statement says, noting that the United Kingdom announced it would no longer provide coverage for Brineura for future Batten disease patients due to the limited evidence of its long-term effectiveness. Currently on hiatus A review of funny, uplifting news in Winnipeg and around the globe. 'This has been one of the most challenging issues that I have worked on since becoming health minister, and I take seriously my role to ensure that B.C. has drug review processes that are independent, evidence-based and treat people equally,' Osborne says in the statement. This report by The Canadian Press was first published July 11, 2025.
Vancouver Sun
06-07-2025
- Health
- Vancouver Sun
‘Every day matters': B.C. stands by decision to cut drug funding for child with terminal brain disease
A Vancouver Island mother says she's heartbroken after the B.C. government refused to reinstate funding for the only drug that has helped her nine-year-old daughter survive a rare and fatal brain disorder. On Friday, Jori Fales met with Health Minister Josie Osborne in Victoria, hoping to reverse the province's recent decision to cut off coverage of Brineura, a drug that can cost up to $1 million a year. Despite presenting new expert data about her daughter Charleigh Pollock's condition, Fales said Osborne refused to budge. 'I still have hope that they will change their mind,' Fales told Postmedia on Saturday. 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. 'But if the physical decline begins in Charleigh, it's irreversible. And the decline can be very rapid. It's why every day matters.' Charleigh is the only person in B.C. diagnosed with CLN2 Batten disease, a rare genetic neurodegenerative disorder that progressively robs children of their ability to see, speak, walk, and eventually swallow. Diagnosed at age three, the disease has already taken away Charleigh's ability to speak and walk, but the nine-year-old's parents and doctors say Brineura has slowed its progression and improved her quality of life. Brineura helps replace an enzyme that patients with CLN2 lack. The drug, administered every two weeks through a brain infusion, is the only available treatment to slow the decline, though it is not a cure. Last month, the province halted Charleigh's coverage after a panel of independent experts from Canada's Drug Agency determined the drug was no longer effective in extending her life. Coverage ended just before Charleigh's last scheduled dose. Osborne previously said the government's decision was based on clinical evidence, not cost. 'I know this is not what Charleigh's family wanted to hear. It's not what any of us wanted to hear,' the minister said at the time. However, Fales and Charleigh's medical team strongly disagree. Attending Friday's meeting alongside Fales were Dr. Ineka Whiteman, a neuroscientist and head researcher with the Batten Disease Support and Research Association; and Lori Brown, president of the Canadian Batten Disease Support and Research Association. Fales said the group shared expert data with Osborne that they believe was missing from the Drug Agency's review, including criticism of the outdated scoring system used to evaluate Brineura's effectiveness. They argued it failed to capture key aspects of Charleigh's condition. They highlighted the work of Dr. Angela Shultz, a CLN2 specialist who developed the original scoring system and has since created a more sensitive tool to assess how children respond to treatment. Fales said this updated tool was provided to Osborne. They also explained to Osborne that the issue isn't just Charleigh's clinical scores, but what those scores miss — the current system overlooks quality of life and disease stability. 'We shared everything we could with Minister Osborne,' Fales told Postmedia Saturday. Brineura, they said, is still helping reduce Charleigh's seizures and manage other symptoms. Cutting off treatment, even temporarily, could trigger rapid and irreversible deterioration, they argued, pointing to clinical evidence now shared with Osborne. 'The minister committed to sending all of this information to the expert committee so they have it to consider when thinking about Charleigh and her case,' the mother wrote on Facebook after the meeting. 'We're confident that if they do this, Charleigh will be able to stay on the drug that's been keeping her alive.' Whiteman, who travelled from New Zealand for the meeting, told Postmedia there's no clear evidence to support a fixed cutoff point for Brineura treatment. She said health care decisions should rest with the child's treating physicians, not a bureaucratic panel. 'According to the clinical experts, who are Charleigh's own treating team, she's still benefiting.' The neuroscientist said global experts also agree that Charleigh is still benefiting from Brineura and should stay on the drug. Whiteman also noted that Canada's Drug Agency's report acknowledged that ' evidence is limited regarding advanced disease and when to stop (Brineura) treatment.' For now, Charleigh's future remains uncertain. She missed her scheduled dose this week — a gap her family fears could mark the beginning of a steep decline. 'She's still here. She's still fighting,' her mother said. 'But without Brineura, I'm so scared about what will happen next.' — With files from Alec Lazenby sgrochowski@
Vancouver Sun
18-06-2025
- Health
- Vancouver Sun
Drug coverage to be discontinued for Vancouver Island girl with fatal condition
Coverage of an expensive drug for a nine-year-old Langford girl with a rare fatal condition is being discontinued, B.C.'s Health Ministry says. Charleigh Pollock, who has a neurodegenerative condition known as Batten disease, will have her last publicly funded infusion of the drug Brineura on Thursday. The drug, which costs about $1 million a year, is intended to slow — but not stop — the decline in patients' ability to walk and talk until they reach the end stage of the disease. Health Minister Jose Osborne said Wednesday that Canada's Drug Agency has completed its review and there is no new evidence to change its 2019 recommendation to discontinue coverage of the drug, given the advanced stage of Charleigh's 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. Osborne said the case has been one of the most difficult for her and her team during her time as minister. 'We all share the desire to do everything we can to care for this young girl,' she said. 'I empathize deeply with Charleigh's family and my heart goes out to them.' Reached by the Times Colonist on Wednesday, mother Jori Fales said she was still processing the news and unable to speak about the decision, which comes in the wake of a previously announced extension of coverage to June 28. Fales has said that two weeks after discontinuation of the drug, Charleigh likely faces 'rapid deterioration, irreversible loss of function and ultimately death.' 'I just need to process this for today,' she said. Charleigh's parents earlier said their daughter had seen benefits from bi-weekly treatments with Brineura, the only drug approved to treat the form of the disease that Charleigh has, known as ceroid lipofuscinosis type 2 (CLN2). Charleigh has been taking the drug for almost six years, and her family has said that as a result, she no longer has multiple seizures a day. Osborne noted that the drug is not an anti-seizure medication, adding there are other drugs to control seizures for patients with CLN2. Charleigh is the only child in B.C. and one of fewer than 20 in Canada with Batten disease, which began to affect her at the age of three, when she suffered seizures and began to lose her ability to walk and talk. The family was informed in January that the Canadian Drug Expert Committee had recommended ending the funding, and that Charleigh's last publicly funded infusion would be Feb. 27. The committee, made up of drug experts as well as lay members appointed by Canada's Drug Agency, makes reimbursement recommendations to participating federal, provincial and territorial publicly funded drug plans. The Health Ministry had said in a statement that while all provinces had adopted the national discontinuation criteria set out by Canada's Drug Agency, 'this disease is so rare that Charleigh is the first Canadian patient to reach the Canada Drug Agency's criteria for discontinuing Brineura coverage.' After the family's story went public, Osborne directed ministry staff to 'urgently review all of the facts' and determine whether the treatment had quality-of-life benefits for Charleigh. Given the extraordinary circumstances, 'we wanted to ensure no stone was left unturned,' Osborne said Wednesday. B.C. covers about 30 drugs under the Expensive Drugs for Rare Disease program. The cost of an individual drug is not a factor considered by the expert committees in recommending coverage, the Health Ministry says. Since the Expensive Drugs for Rare Diseases review process was established in 2007, the ministry has never provided ongoing coverage for a drug against the recommendations of clinical experts and criteria established by Canada's Drug Agency, a ministry statement said. Courtenay-Comox MLA Brennan Day, the B.C. Conservative critic for rural and seniors health, urged the province to reverse the decision on compassionate grounds. 'I can't imagine the emotions the family is feeling,' said Day. ceharnett@
