British Columbia’s minister of health says the province has reinstated coverage for an expensive drug used by a Vancouver Island\u00a0girl with a rare and terminal genetic disorder.\u00a0<\/p>\n
Josie Osborne said in a statement issued Thursday\u00a0that Charleigh Pollock, who recently turned 10, will once again receive coverage for Brineura.\u00a0The\u00a0drug\u00a0treats neuronal ceroid lipofuscinosis\u00a0Type 2, also known as CLN2 or Batten disease, which\u00a0results in multiple seizures every day \u2014\u00a0eventually causing\u00a0brain damage.\u00a0<\/p>\n
Osborne said last month\u00a0the girl’s condition\u00a0had reached the point where it met\u00a0criteria to discontinue using the $1-million-per-year medication.<\/p>\n
Pollock’s family and several experts and physicians had argued that\u00a0Brineura\u00a0was improving her quality of life.<\/p>\n
But\u00a0the health minister,\u00a0quoting the findings of a medical review committee, said\u00a0once a patient’s\u00a0motor and language functions have declined to a certain point, Brineura no longer slows the progression of CLN2.<\/p>\n
Osborne announced last week there would be no change to the committee’s decision that the drug\u00a0is no longer working, adding that she knew\u00a0the outcome of the review process was not what the girl’s family\u00a0wanted.<\/p>\n
But Osborne said Thursday that Pollock’s coverage has been reinstated and will be available\u00a0to the girl “for as long as the treating physician and the family deem it appropriate.”\u00a0<\/p>\n
“I continue to strongly believe that decisions about care should be made by health experts to ensure they are based on the best available evidence,” Osborne said in a statement.<\/p>\n
“The letter I received today from Batten disease experts confirms there is significant disagreement between health experts on Brineura, and it is not acceptable that Charleigh and her family suffer as a result of that disagreement about the use of Brineura for Batten disease.”<\/p>\n
On The CoastExperts and advocates write joint letter opposing decision made by B.C. Ministry of Health<\/p>\n
Researchers and advocates wrote a letter to B.C.’s Minister of Health, Josie Osborne, strongly opposing their decision to discontinue funding from Charleigh Pollock, and call for a review of the current discontinuation criteria. We hear from the president of the Batten Disease Support, Research and Advocacy Canada (BDSRA), Lori Brown<\/p>\n
Osborne’s spokesperson said Pollock’s family has been told about the decision.<\/p>\n
Pollock is one of 13 children in Canada and the only person in B.C. with the disorder, which results in multiple seizures a day.<\/p>\n
Her name became known in 2019 when the province announced it would be covering the cost of the medication, which is given through an infusion of fluid to the brain to slow the progression of CLN2.<\/p>\n
Funding for the drug was approved when Pollock was three years old.\u00a0<\/p>\n","protected":false},"excerpt":{"rendered":"British Columbia’s minister of health says the province has reinstated coverage for an expensive drug used by a…\n","protected":false},"author":2,"featured_media":18584,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[58],"tags":[97,243],"class_list":{"0":"post-18583","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-medication","8":"tag-health","9":"tag-medication"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/18583","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/comments?post=18583"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/18583\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media\/18584"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media?parent=18583"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/categories?post=18583"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/tags?post=18583"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}