{"id":11795,"date":"2025-07-21T01:31:05","date_gmt":"2025-07-21T01:31:05","guid":{"rendered":"https:\/\/www.newsbeep.com\/uk\/11795\/"},"modified":"2025-07-21T01:31:05","modified_gmt":"2025-07-21T01:31:05","slug":"b-c-restores-rare-drug-funding-for-10-year-old-girl-with-batten-disease","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/uk\/11795\/","title":{"rendered":"B.C. restores rare drug funding for 10-year-old girl with Batten disease"},"content":{"rendered":"

The B.C. government says it is restoring funding for a drug used to improve the quality of life for a 10-year-old girl with a rare, terminal illness.<\/p>\n

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It comes after a group of experts on Batten disease<\/a> in the United States penned a letter to B.C.\u2019s health minister and premier, strongly opposing the decision to withdraw funding for Charleigh Pollock.<\/p>\n

\u201cI spoke to Charleigh\u2019s family earlier this evening. I confirmed to them that I have reinstated Charleigh\u2019s Brineura coverage and that coverage will be available to them for as long as the treating physician and the family deem it appropriate,\u201d Health Minister Josie Osborne said in a statement.<\/p>\n

\u201cI continue to strongly believe that decisions about care should be made by health experts to ensure they are based on the best available evidence. The letter I received today from Batten disease experts confirms there is significant disagreement between health experts on Brineura, and it is\u00a0not\u00a0acceptable\u00a0that Charleigh and her family suffer as a result of that disagreement\u00a0about the use of Brineura for Batten Disease.\u201d<\/p>\n

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The letter was signed by the Clinical Directors from the U.S. Batten Disease Clinical Centers of Excellence and Batten Disease Clinical Research Consortium and asks the B.C. government to review the current discontinuation criteria.<\/p>\n

Pollock has a neurological disorder called\u00a0Batten disease<\/a>\u00a0that leaves her with recurring severe seizures and mobility loss, and will eventually cut her young life short.<\/p>\n

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On June 18<\/a>, Charleigh\u2019s family was informed that government funding of a drug called Brineura, which her family said has stabilized her condition and radically improved her quality of life since her 2019 diagnosis, would be cut off.<\/p>\n

The drug is expensive, carrying an annual bill for the twice-monthly infusions of about $1 million.<\/p>\n

Charleigh\u2019s family appealed to the B.C. Ministry of Health to reverse the decision and consider more research and speak to more experts.<\/p>\n

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However, the decision was not reversed<\/a>.<\/p>\n

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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\tReview of Charleigh Pollock\u2019s case finished\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/p>\n

The doctors and researchers who wrote the letter say their international colleagues and collaborators Angela Schulz MD and Miriam Nickel MD in Germany were instrumental in developing the clinical outcome measures used to track disease progression in CLN2 disease, which is a type of Batten disease.<\/p>\n

\u201cDrawing from our collective and unparalleled expertise in CLN2 disease, we strongly oppose the decision to withdraw funding for life-sustaining ERT from Charleigh Pollock and call for a review of the current discontinuation criteria,\u201d the letter reads.<\/p>\n

Prior to 2017, the late-infantile form of CLN2 disease was universally fatal, however, the introduction of intracerebroventricular ERT, which is the medication Pollock was given, \u201cfundamentally altered the disease trajectory.\u201d<\/p>\n

The experts said the treatment \u201chas demonstrably prolonged survival, slowed progression, improved seizure control, and enhanced quality of life.\u201d<\/p>\n

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The B.C. government has always maintained that the decision to stop funding Charliegh\u2019s medication was never about money but a panel of experts decided the drug was not helping Charleigh anymore.<\/p>\n

\u201cThis is a really awful case,\u201d B.C. Premier David Eby said on Thursday. \u201cThis is a beautiful child and a family facing a horrific diagnosis. Medical experts are disagreeing about the best course of action.<\/p>\n

\u201cWe received a letter this morning from slightly more than a dozen experts in Batten disease from the United States who wrote to the (health) minister and I expressing that their perspective on this medication is that it would continue to provide benefit for patients, including for Charleigh, that are at the stage that she\u2019s at.\u201d<\/p>\n

Eby said Health Minister Josie Osborne will likely have more to say on the matter on Friday.<\/p>\n

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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\tLangford mom devastated after province pulls funding for daughter\u2019s expensive drug\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/p>\n

The letter from experts said they are concerned by the clinical and scientific justification used by B.C.\u2019s ministry of health to terminate treatment for Charleigh.<\/p>\n

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Andrew McFadyen, executive director of the Issac Foundation in Toronto, which is a patient advocacy organization dedicated to supporting individuals living with rare diseases, was one of the experts who signed the letter to Eby and Osborne.<\/p>\n

He said they provided the same information to Osborne when they met with her a few weeks ago and he was appalled the government stopped funding the drug in the first place.<\/p>\n

\u201cSo while this may not be overly new information, I think the idea that every single Batten disease expert in the world has signed on to say, we\u2019re unified, we agree, we\u2019re imploring you to change this decision, but we\u2019re also imploring you to look at developing new criteria so that this situation doesn\u2019t have to take place for other children across the country, but also around the world, like it did here now,\u201d McFayden added.<\/p>\n

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\n\t\t&copy 2025 Global News, a division of Corus Entertainment Inc.\t<\/p>\n","protected":false},"excerpt":{"rendered":"The B.C. government says it is restoring funding for a drug used to improve the quality of life…\n","protected":false},"author":2,"featured_media":11796,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[42],"tags":[7675,7674,102,6591,229,56,54,55],"class_list":{"0":"post-11795","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-medication","8":"tag-batten-disease","9":"tag-charleigh-pollock","10":"tag-health","11":"tag-medication","12":"tag-politics","13":"tag-uk","14":"tag-united-kingdom","15":"tag-unitedkingdom"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/11795","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=11795"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/11795\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/11796"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=11795"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=11795"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=11795"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}