{"id":4767,"date":"2025-07-18T06:17:08","date_gmt":"2025-07-18T06:17:08","guid":{"rendered":"https:\/\/www.newsbeep.com\/ca\/4767\/"},"modified":"2025-07-18T06:17:08","modified_gmt":"2025-07-18T06:17:08","slug":"minister-restores-drug-funding-for-b-c-girl-with-rare-disease","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ca\/4767\/","title":{"rendered":"Minister restores drug funding for B.C. girl with rare disease"},"content":{"rendered":"

Open this photo in gallery:<\/a><\/p>\n

B.C. Health Minister Josie Osborne said Thursday that she has reinstated the funding for Charleigh Pollock.DARRYL DYCK\/The Canadian Press<\/p>\n

Funding for a nine-year-old girl who has an extremely rare neurodegenerative disease has been restored by the British Columbia government. <\/p>\n

Health Minister Josie Osborne said Thursday that she has reinstated the funding for Charleigh Pollock for the drug Brineura, which costs about $1 million a year. <\/p>\n

Osborne said she believes health professionals should make decisions about care, and a letter she received from Batten disease experts in the United States detailed a \u201csignificant disagreement\u201d over the drug. <\/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 Osborne said in a statement. <\/p>\n

The minister said the Vancouver Island girl and her family should not suffer because of the disagreement over the drug.<\/p>\n

The government had cut off the funding last month, saying an expert committee determined that the drug was no longer helping to slow the progress of the girl\u2019s disease.<\/p>\n

It reinforced its decision last Friday<\/a>, when Osborne said another review by an expert committee showed that the drug was no longer helping. <\/p>\n

Osborne said the decision wasn\u2019t about the cost of the drug. <\/p>\n

New Brunswick gets federal funding to cover cost of drugs for four rare diseases<\/a><\/p>\n

The girl\u2019s mother Jori Fales posted a video on social media sobbing, saying she was \u201cdisgusted\u201d and \u201cheartbroken\u201d by the decision. <\/p>\n

Premier David Eby said earlier Thursday that it was difficult to see the suffering and anxiety of the girl\u2019s family. <\/p>\n

Eby said the letter from medical experts in the United States who treat children with this disease raised serious concerns about the Health Canada criteria applied in the province. <\/p>\n

\u201cThat disagreement is certainly causing a lot of concern,\u201d he said, noting that the health minister had planned to take it to the same committee that made the original decision. <\/p>\n

Pollock is the only person in B.C. to have the disease and one of about 20 in Canada.<\/p>\n","protected":false},"excerpt":{"rendered":"Open this photo in gallery: B.C. Health Minister Josie Osborne said Thursday that she has reinstated the funding…\n","protected":false},"author":2,"featured_media":4768,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[33],"tags":[901,888,902,879,877,903,49,48,876,895,896,891,878,875,46,549,295,894,887,914,880,881,893,84,889,890,884,904,377,885,909,910,912,907,911,905,908,882,898,899,714,897,906,865,61,900,892,886,883,913],"class_list":["post-4767","post","type-post","status-publish","format-standard","has-post-thumbnail","category-medication","tag-alberta","tag-arts-news","tag-bc","tag-breaking-news","tag-breaking-news-video","tag-british-columbia","tag-ca","tag-canada","tag-canada-news","tag-canada-sports","tag-canada-sports-news","tag-canada-trafficcanada-weather","tag-canadian-breaking-news","tag-canadian-news","tag-economy","tag-education","tag-environment","tag-federal-government","tag-foreign-news","tag-globe-and-mail","tag-globe-and-mail-breaking-news","tag-globe-and-mail-canada-news","tag-government","tag-health","tag-life-news","tag-lifestyle","tag-local-news","tag-manitoba","tag-medication","tag-national-news","tag-new-brunswick","tag-newfoundland-and-labrador","tag-northwest-territories","tag-nova-scotia","tag-nunavut","tag-ontario","tag-pei","tag-photos","tag-political-news","tag-political-opinion","tag-politics","tag-politics-news","tag-quebec","tag-sports-news","tag-technology","tag-travel","tag-trudeau","tag-us-news","tag-world-news","tag-yukon"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/4767","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/comments?post=4767"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/4767\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media\/4768"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media?parent=4767"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/categories?post=4767"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/tags?post=4767"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}