{"id":2200,"date":"2025-06-21T11:20:14","date_gmt":"2025-06-21T11:20:14","guid":{"rendered":"https:\/\/www.europesays.com\/us\/2200\/"},"modified":"2025-06-21T11:20:14","modified_gmt":"2025-06-21T11:20:14","slug":"b-c-pulls-funding-on-1m-drug-for-9-year-old-vancouver-island-girl-with-rare-condition","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/us\/2200\/","title":{"rendered":"B.C. pulls funding on $1M drug for 9-year-old Vancouver Island girl with rare condition"},"content":{"rendered":"

\"Charleigh<\/p>\n

Charleigh Pollock, pictured, has CLN2, a rare, terminal disease. The funding for her medication is being pulled by the province. (Submitted by Jori Fales to CHEK News – image credit)<\/p>\n

The B.C. government said Wednesday it will be pulling funding for an extremely expensive drug used by one person in the province \u2014\u00a0a young Vancouver Island girl.<\/p>\n

Charleigh Pollock, 9,\u00a0suffers from neuronal ceroid lipofuscinosis type 2, also known as CLN2 or Batten disease, a rare and terminal genetic disorder that causes multiple seizures every day, eventually causing brain damage.<\/p>\n

Pollock’s name became known in 2019 when the province announced it would be covering the cost of a $1 million-per-year medication for her known as\u00a0Brineura<\/a>, which is\u00a0given through an infusion of fluid to the brain to slow the progression of\u00a0CLN2.<\/p>\n

Pollock is the only person in B.C. with the disease, which has no cure.<\/p>\n

“Expensive drugs for rare diseases add a layer of complexity to decision-making,” Health Minister Josie Osborne said in a statement on\u00a0Wednesday.<\/p>\n

However, she said, the cost of the medication has nothing to do with the recommendations made by medical experts\u00a0that made this decision to stop coverage.<\/p>\n

Funding for the drug was approved<\/a>\u00a0when Pollock was three years old.<\/p>\n

Osborne said\u00a0once a patient has declined in their motor and language functions by a certain amount, Brineura no longer slows the progression of CLN2.<\/p>\n

“Last year, it was determined that Charleigh’s condition had progressed to the point where she met the discontinuation criteria for Brineura,” she said.<\/p>\n

\"Charleigh<\/p>\n

Charleigh Pollock, pictured at age three, has CLN2. (Trevor Pollock\/Facebook)<\/p>\n

From there, she said the ministry undertook a review of the situation.<\/p>\n

The province said the decision to cover drugs for patients that fall under B.C.’s Expensive Drugs for Rare Diseases program are made based on recommendations from a committee of independent experts that use clinical criteria from by Canada’s Drug Agency.<\/p>\n

“I know this is not what Charleigh’s family wanted to hear. It’s not what any of us wanted to hear,” Osborne said.<\/p>\n

In a Facebook post made on June 13 prior to the decision being made,\u00a0Pollock’s mother\u00a0Jori Fales said that after reading the Drug Agency’s report<\/a>, she couldn’t see how the B.C. government would choose to stop coverage.<\/p>\n

She said\u00a0Pollock’s medical team feels continuing the medication is in her best interest.<\/p>\n

“Anything less is simply cruel and wrong,” she wrote.<\/p>\n

“It is not Charleigh’s time to discontinue Brineura,”\u00a0Fales added.\u00a0“She is still benefiting, and we implore the province to allow her to continue living and accessing this drug.”<\/p>\n","protected":false},"excerpt":{"rendered":"Charleigh Pollock, pictured, has CLN2, a rare, terminal disease. The funding for her medication is being pulled by…\n","protected":false},"author":3,"featured_media":2201,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[3017,3013,3018,210,1060,3016,3014,67,132,68,3015],"class_list":{"0":"post-2200","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-medication","8":"tag-charleigh","9":"tag-charleigh-pollock","10":"tag-drug-agency","11":"tag-health","12":"tag-medication","13":"tag-pollock","14":"tag-rare-diseases","15":"tag-united-states","16":"tag-unitedstates","17":"tag-us","18":"tag-vancouver-island"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@us\/114721090796656694","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/2200","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/comments?post=2200"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/2200\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media\/2201"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media?parent=2200"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/categories?post=2200"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/tags?post=2200"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}