Latest news with #CanadianInstitutesofHealthResearch
Winnipeg Free Press
4 days ago
- Health
- Winnipeg Free Press
Grant to help U of M researchers study HIV care
A team of researchers has been awarded nearly $3 million in federal funding to research Manitoba-made ways to to improve HIV care as diagnosis rates continue to skyrocket. Manitoba's rate of new HIV diagnoses is second only to Saskatchewan in all of Canada. In 2023, Manitoba's diagnosis rate was 19.3 per 100,000 residents, while the national average was just over six per 100,000 residents. Last year, 280 Manitobans were diagnosed with HIV compared with 199 in 2022 — a 41 per cent increase — despite HIV being highly preventable. Manitoba's cases are unique in Canada: more women than men were diagnosed in 2022 and 2023, nearly half of women and 29 per cent of men diagnosed were homeless, and a majority reported a barrier such as mental health issues or drug use. University of Manitoba researcher Zulma Rueda and her team will use $2.75 million from the Canadian Institutes of Health Research to study the gaps in care in Manitoba. 'In this case, the challenge is that this is not just a medical problem. We have excellent HIV treatment, we have excellent HIV-prevention treatments available, we have excellent testing,' Rueda said Monday. 'In addition to those resources, we need wrap-around services and social services.' Researchers will work with community groups, including the Aboriginal Health and Wellness Centre, Siloam Mission and the Manitoba HIV Program to connect with the people they serve. 'This disease has a different presentation in different contexts, so it's not the same in Vancouver (and) it's not the same in Toronto. Understanding how it affects and which populations are affected, organizations can design tailored strategies to serve the most affected communities,' Rueda said. Research nurse Maya Sykes has been offering primary care at Siloam Mission's Princess Street clinic over the past year, and will be part of the upcoming project, which is set to begin later this year. 'My role over this past year has been to kind of build those relationships with community, because a lot of our folks have a lot of previous trauma or negative experiences with the health care system and with health care workers,' she said. She and others in the U of M infectious disease department will begin with community consultation to paint a picture of how people in Manitoba contract HIV, what might stop them from accessing treatment, and how they can be connected to continuing medical care. 'Just in the conversations that I've had with people, some might know their HIV status, but some might not know what that next step is,' she said. 'Do I get treatment? How do I get treatment? What do I do? I don't have a safe place to store my medication, for example, or I'm living in an encampment. There's just a lot of other competing factors.' Wednesdays A weekly dispatch from the head of the Free Press newsroom. Sykes believes diagnosis rates under-represent the true spread of HIV in the province. 'I think that the research, it's unfortunately going to be staggering,' she said. 'Because I think a lot of the folks that we see here might not have ever been connected to the health care system in Manitoba.' In 2023, 100,463 people were tested for HIV; out of those tests, 0.6 per cent were positive. Malak AbasReporter Malak Abas is a city reporter at the Free Press. Born and raised in Winnipeg's North End, she led the campus paper at the University of Manitoba before joining the Free Press in 2020. Read more about Malak. Every piece of reporting Malak produces is reviewed by an editing team before it is posted online or published in print — part of the Free Press's tradition, since 1872, of producing reliable independent journalism. Read more about Free Press's history and mandate, and learn how our newsroom operates. Our newsroom depends on a growing audience of readers to power our journalism. If you are not a paid reader, please consider becoming a subscriber. Our newsroom depends on its audience of readers to power our journalism. Thank you for your support.
Global News
04-07-2025
- Health
- Global News
Research on gene therapy for rare inherited disease reduces costly, regular treatment
A researcher says an experimental gene therapy for a rare inherited disorder is saving almost as much money for the treatment of five patients as the study itself costs. The early-stage study published last year found that three of the men being treated for Fabry disease were able to stop using enzyme-replacement therapy — which costs about $300,000 annually — once they started on the 'one-time' gene therapy. Dr. Michael West, a co-author and kidney specialist in Halifax, says the overall savings have been $3.7 million, against research costs to date of about $4 million — which was largely provided by the federal Canadian Institutes of Health Research. Fabry disease is a rare disorder that leaves the body unable to produce the correct version of an enzyme that breaks down fatty materials — leading to major damage to vital organs and shortened lifespans. Some people suffer various symptoms including pain in their hands and feet, intestinal problems and chronic fatigue. Story continues below advertisement The gene therapy uses the stem cells taken from a patient's bone marrow to deliver a replacement copy of the faulty gene. The research team wrote in the Journal of Clinical and Translational Medicine last year that one of the men with advanced kidney disease saw his condition stabilize, and the researchers also found that none of the men had major events such as heart attacks or kidney failure caused by Fabry over the last five years, West said. 'These patients are still producing more of the needed enzymes than they did prior to the gene therapy,' said the 72-year-old physician, who works at the Queen Elizabeth II Health Sciences Centre in Halifax and is a professor at Dalhousie University. 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 West said in other instances of gene therapy there's been cases of severe side effects from procedures, including the development of various forms of cancer. However, West said that since the men received their gene therapy for Fabry between 2016 and 2018, there has been just two instances of side effects, neither of which were a direct result of the therapy itself. Rather, in one case, a chemotherapy drug used to 'make space' in bone marrow for grafting in modified cells caused a man's white blood cell count to fall. He was treated with antibiotics for a potential infection and recovered, West said. In a second case, a man developed a large bruise on his leg, which the researchers believe was due to possible side effects of the chemotherapy drug. Story continues below advertisement West said that while the research needs to go to larger-scale studies before it becomes conventional treatment, he believes it's worth pursuing due in part to the costs and 'the burden to patients' of the existing therapy. The specialist said that conventional enzyme-replacement therapy has to occur every two weeks, requiring approximately two hours for each treatment. Out of the roughly 540 people with Fabry in Canada, the researcher says about 100 are in Nova Scotia. It's believed the first person with the genetic mutation can be traced back to a French woman who immigrated to Lunenburg, N.S., in the colonial era, and her descendants carried the faulty gene through 18 generations that followed. 'Currently, there's some cases in Ontario, there's some in British Columbia, there's some in the U.K., some cases in Florida, but they all originated from here and they share the same mutation,' West said. West said the ultimate cost of gene therapy per patient has yet to be determined, as it first would have to be approved by the major regulatory agencies as an accepted treatment. But he said one option for inherited genetic diseases, where there is a relatively small group of patients, would be for government research agencies to develop and own the treatment themselves, and then earn fees to provide the treatments to other national health systems. Story continues below advertisement West said he realizes the sample size is small, and the goal is now to create a similar study with 25 to 30 patients, including women, over a two-to-three-year period. The senior director of research at Nova Scotia Health said in an email on Friday the project is offering new hope for people with Fabry, as it replaces lifelong treatments with a 'potential curative solution.' 'The impact has the potential to be both deeply personal and economically profound, saving lives, improving quality of life and saving millions in health-care costs. This is a perfect example of the importance of research,' wrote Dr. Ashley Hilchie. This report by The Canadian Press was first published July 4, 2025.
Winnipeg Free Press
04-07-2025
- Health
- Winnipeg Free Press
Research on gene therapy for rare inherited disease reduces costly, regular treatment
HALIFAX – A researcher says the experimental use of gene therapy for a rare inherited disorder is saving almost as much money for treatment of five patients as the study itself costs. The early-stage study published last year found that three of the men being treated for Fabry disease were able to stop using enzyme-replacement therapy — which costs about $300,000 annually — once they started on the 'one-time' gene therapy. Dr. Michael West, a co-author and kidney specialist in Halifax, says the overall savings have been $3.7 million, against research costs to date of about $4 million — which was largely provided by the federal Canadian Institutes of Health Research. Fabry disease is a rare disorder that leaves the body unable to produce the correct version of an enzyme that breaks down fatty materials — leading to major damage to vital organs and shortened lifespans. Some people suffer various symptoms including pain in their hands and feet, intestinal problems and chronic fatigue. The gene therapy uses the stem cells taken from the men's bone marrow to deliver a replacement copy of the faulty gene. The research team wrote in the Journal of Clinical and Translational Medicine last year that one of the men with advanced kidney disease saw his condition stabilize, and the researchers also found that none of the men had major events such as heart attacks or kidney failure caused by Fabry over the last five years, West said. 'These patients are still producing more of the needed enzymes than they did prior to the gene therapy,' said the 72-year-old physician, who works at the Queen Elizabeth II Health Sciences Centre in Halifax and is a professor at Dalhousie University. West said in other instances of gene therapy there's been instances of severe side effects from procedures, including the development of various forms of cancer. However, West said since the men received their gene therapy for Fabry between 2016 and 2018, there has been just two instances of side effects, neither of which were a direct result of the therapy itself. Rather, in one case, a chemotherapy drug used to 'make space' in bone marrow for grafting in modified cells caused a man's white blood cell count to fall. He was treated with antibiotics for a potential infection and recovered, West said. In a second case, a man developed a large bruise in his leg, which the researchers believe was due to possible side effects of the chemotherapy drug. West said while the research needs to go to larger-scale studies before it becomes conventional treatment, he believes it's worth pursuing due in part to the costs and 'the burden to patients' of the existing therapy. The specialist said that conventional enzyme-replacement therapy has to occur every two weeks, requiring approximately two hours for each treatment. Out of the roughly 540 people with Fabry in Canada, the researcher says about 100 are in Nova Scotia. It's believed the first person with the genetic mutation can be traced back to a French woman who immigrated to Lunenburg, N.S., in the colonial era, and her descendants carried the faulty gene through 18 generations that followed. 'Currently, there's some cases in Ontario, there's some in British Columbia, there's some in the U.K., some cases in Florida, but they all originated from here and they share the same mutation,' West said. West said the ultimate cost of gene therapy per patient has yet to be determined, as it first would have to be approved by the major regulatory agencies as an accepted treatment. But he said one option for inherited genetic diseases, where there is a relatively small group of patients, would be for government research agencies to develop and own the treatment themselves, and then earn fees to provide the treatments to other national health systems. West said he realizes the sample size is small, and the goal is now to create a similar study with 25 to 30 patients, including women, over a two- to three-year period. This report by The Canadian Press was first published July 4, 2025.
Hamilton Spectator
04-07-2025
- Health
- Hamilton Spectator
Research on gene therapy for rare inherited disease reduces costly, regular treatment
HALIFAX - A researcher says the experimental use of gene therapy for a rare inherited disorder is saving almost as much money for treatment of five patients as the study itself costs. The early-stage study published last year found that three of the men being treated for Fabry disease were able to stop using enzyme-replacement therapy — which costs about $300,000 annually — once they started on the 'one-time' gene therapy. Dr. Michael West, a co-author and kidney specialist in Halifax, says the overall savings have been $3.7 million, against research costs to date of about $4 million — which was largely provided by the federal Canadian Institutes of Health Research. Fabry disease is a rare disorder that leaves the body unable to produce the correct version of an enzyme that breaks down fatty materials — leading to major damage to vital organs and shortened lifespans. Some people suffer various symptoms including pain in their hands and feet, intestinal problems and chronic fatigue. The gene therapy uses the stem cells taken from the men's bone marrow to deliver a replacement copy of the faulty gene. The research team wrote in the Journal of Clinical and Translational Medicine last year that one of the men with advanced kidney disease saw his condition stabilize, and the researchers also found that none of the men had major events such as heart attacks or kidney failure caused by Fabry over the last five years, West said. 'These patients are still producing more of the needed enzymes than they did prior to the gene therapy,' said the 72-year-old physician, who works at the Queen Elizabeth II Health Sciences Centre in Halifax and is a professor at Dalhousie University. West said in other instances of gene therapy there's been instances of severe side effects from procedures, including the development of various forms of cancer. However, West said since the men received their gene therapy for Fabry between 2016 and 2018, there has been just two instances of side effects, neither of which were a direct result of the therapy itself. Rather, in one case, a chemotherapy drug used to 'make space' in bone marrow for grafting in modified cells caused a man's white blood cell count to fall. He was treated with antibiotics for a potential infection and recovered, West said. In a second case, a man developed a large bruise in his leg, which the researchers believe was due to possible side effects of the chemotherapy drug. West said while the research needs to go to larger-scale studies before it becomes conventional treatment, he believes it's worth pursuing due in part to the costs and 'the burden to patients' of the existing therapy. The specialist said that conventional enzyme-replacement therapy has to occur every two weeks, requiring approximately two hours for each treatment. Out of the roughly 540 people with Fabry in Canada, the researcher says about 100 are in Nova Scotia. It's believed the first person with the genetic mutation can be traced back to a French woman who immigrated to Lunenburg, N.S., in the colonial era, and her descendants carried the faulty gene through 18 generations that followed. 'Currently, there's some cases in Ontario, there's some in British Columbia, there's some in the U.K., some cases in Florida, but they all originated from here and they share the same mutation,' West said. West said the ultimate cost of gene therapy per patient has yet to be determined, as it first would have to be approved by the major regulatory agencies as an accepted treatment. But he said one option for inherited genetic diseases, where there is a relatively small group of patients, would be for government research agencies to develop and own the treatment themselves, and then earn fees to provide the treatments to other national health systems. West said he realizes the sample size is small, and the goal is now to create a similar study with 25 to 30 patients, including women, over a two- to three-year period. This report by The Canadian Press was first published July 4, 2025.
Vancouver Sun
01-07-2025
- Health
- Vancouver Sun
What is Batten disease and why did the B.C. government cut off coverage for a nine-year-old girl?
On June 18, Health Minister Josie Osborne announced the province would be cutting off coverage of the drug Brineura for nine-year-old Charleigh Pollock after a panel of independent experts determined the expensive medication was no longer working to beat back Pollock's rare degenerative brain disorder. Pollock, who lives on Vancouver Island, is the only person in B.C. with Batten disease. Children with the disease usually die in their early to mid teens. People diagnosed at an older age can live to their 20s or even 30s. The decision to cut coverage of Brineura, which can cost upwards of $1 million a year, was not taken lightly, according to Osborne, and that it had nothing to do with the price tag but rather to do with what experts felt was a lack of efficacy of the drug to extend Pollock's life. 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. 'Last year, it was determined that Charleigh's condition had progressed to the point where she met the discontinuation criteria for Brineura,' Osborne told reporters at the time. 'I know this is not what Charleigh's family wanted to hear. It's not what any of us wanted to hear.' Jori Fales, Pollock's mom, has derided the decision, saying that her daughter's medical teams believes the drug is still working to alleviate her seizures and other symptoms. The cut off of coverage came the day before Pollock's final dose. Urgings by Fales and the family's doctor failed to gain a reprieve, however, with Premier David Eby stating last week that politicians should not be allowed to go against independent medical recommendations. Here are four things you need to know: Batten disease, also known as neuronal ceroid lipofuscinoses, is a rare genetic neurodegenerative disorder that only affects between 1 and 35 babies per 500,000, according to the Canadian Institutes of Health Research. Diagnosis usually occurs around the age of three but the disease can also remain dormant until early teens, with initial symptoms including seizures, loss of vision and declining motor skills. Eventually the disease takes away the child's ability to see, walk, talk and swallow, with fatalities often happening only a few years after onset, although those who are diagnosed in their teens can live to early adulthood and sometimes into their 30s. Pollock was diagnosed at age three and her disease has so far taken her ability to speak and walk, but her parents say the disease has slowed due to Brineura and her quality of life is improved because of the medication. Dr. Ineka Whiteman, head researcher for the Batten Disease Support and Research Association in the U.S. and Australia, said there are 13 types of the disease and the type that Pollock has, CLN2, normally has a life expectancy of 10-12 years without treatment. The government is cutting coverage of Brineura because a panel of experts from Canada's Drug Agency said she has reached the end-of-life stage of Batten disease and that there is little more the drug can do to help her. Whiteman said this conclusion isn't based on any evidence, however, as the Canadian drug agency review found there was insufficient evidence to determine what the discontinuation criteria should be for children on Brineura. She said she believes the decision came down to money more than anything else, although the government disagrees that is the case. 'According to the clinical experts, who are Charlie's own treating team, she's still benefiting,' said Whiteman. The government's 'not looking at the bigger picture and the depth of expertise globally who are in agreement that Charlie is still benefiting from this drug and really should not be removed from Brineura.' Whiteman said all the evidence says Brineura is effective, particularly for those who start before being diagnosed because they are determined to have a high chance of having it passed down from a family member. For those who start the drug after being diagnosed, the results are less positive but still much better than if they weren't treated at all. 'We know from the clinical trials that it does slow the progression of the disease symptoms considerably, but the later a child starts on Brineura, the outcome looks a little different for those children, but we do know that it still slows the disease progression and extends the lifespan for the child,' said Whiteman. Fales has said the family is devastated by the decision and is hoping the province will reconsider. She wrote in a social media post that she doesn't know what life will mean for Charleigh as she will miss her first scheduled dose of Brineura this week. 'It's alarming to me that a government-appointed body can override the clinical care plan carefully developed by our medical team, especially when it's our medical team that knows Charleigh the best.' Fales and Whiteman plan to meet with Osborne on Friday and hope to convince the minister to reverse course. Some observers say the government has actually made the right choice in this case, as hard as it was. Terry Lake, a former B.C. Liberal minister of health, said it is important the province weigh the potential benefits against the overall cost. 'Money is not unlimited, and so if a drug is costing a lot of taxpayer dollars, and not in the eyes of experts making a meaningful difference to the patient, and despite what you would kind of like to do to support the family, you have to make a decision that it doesn't fit the criteria and that money can be used in other ways to help other people,' Lake told Postmedia. He said Osborne intervening to change the decision would be a very bad precedent. For more health news and content around diseases, conditions, wellness, healthy living, drugs, treatments and more, head to – a member of the Postmedia Network.
