a new GoFundMe<\/a> dedicated just to covering the cost of the drug going forward, which is around $65,000 a month.<\/p>\n\u201cWithout this medication, needing to be administered every two weeks, her condition will rapidly deteriorate,\u201d her mother Jori Fales wrote on the site.<\/p>\n
\u201cThis decision has left the Fales-Pollock family in an unimaginable position, forced to find alternative means to fund Charleigh\u2019s ongoing treatments.<\/p>\n
\u201cLeading experts have spoken out in support of Charleigh and warns that removing treatment is \u2018akin to a controlled euthanasia\u2019 \u2014 and without it, Charleigh faces \u2018a horrific death.\u2019\u201d<\/p>\n
Health Minister Josie Osborne declined for a third time last week to restore coverage of Brineura for Charleigh, sticking with the drug experts in her ministry who say after six years of coverage the drug now provides little clinical benefit to Charleigh. Her family, care team and international experts argue otherwise.<\/p>\n
The decision to cut off a young girl from her medication, against her care team\u2019s wishes, has proven extremely unpopular, battering Osborne\u2019s credibility over several months.<\/p>\n
\u201cGoFundMe health care\u2014that\u2019s what B.C. families get under David Eby\u2019s NDP,\u201d said Opposition Conservative Leader John Rustad.<\/p>\n
\u201cThis government should be ashamed to see Charleigh Pollock\u2019s parents begging online for treatment\u2014this should not be happening in British Columbia. What happens when it\u2019s your kid who can\u2019t get medicine?\u201d<\/p>\n
The refusal of the BC NDP to show compassion has also not landed well amongst party supporters, including Port Coquitlam Mayor Brad West.<\/p>\n
\u201cIsn\u2019t one of the fundamental roles of elected government to offset the cold, cruel indifference of bureaucracy?\u201d West posted on social media.<\/p>\n
\u201cShouldn\u2019t our elected officials be the ones who humanize the system? Especially when they come from a party that claims the mantle of compassion.<\/p>\n
\u201cOtherwise, what\u2019s the point? May as well hand every goddamn decision over to an algorithm.\u201d<\/p>\n
If Osborne\u2019s latest rejection is the NDP\u2019s final word on Charleigh, there\u2019s lots of blame to go around for how the system failed the young girl.<\/p>\n
Osborne could have got involved earlier, before the situation exploded into a political crisis, to find a behind-the-scenes compromise between the experts and the drug company to keep the medicine flowing for the final couple of years of Charleigh\u2019s life.<\/p>\n
Pharmaceutical giant Biomarin, the manufacturer of Brineura, could have offered compassionate funding for Charleigh, out of the US$169 million in net revenue from Brineura sales in 2024, and the US$2.8 billion in revenue for the year.<\/p>\n
Charleigh\u2019s local NDP MLA, Ravi Parmar, could have helped champion the family\u2019s arguments directly to the health minister, rather than towing the government line and disappearing when his constituents needed help.<\/p>\n
Government\u2019s senior political strategists could have crafted a more nuanced narrative for Charleigh\u2019s case than the rigid \u2018science versus politics\u2019 frame\u2014a convenient excuse that allowed politicians to act as passive observers on a case where the science was anything but settled and leadership was needed.<\/p>\n
Premier David Eby could have stepped in at multiple points to say that the government would err on the side of mercy for a terminally ill girl, grandfathering her medicine, lowering the political temperature, and crafting any number of other reviews or interventions that would have covered everybody\u2019s political hide while providing a better outcome.<\/p>\n
And yet, none of it happened. Week by week, B.C.\u2019s health system, and the elected officials overseeing it, consistently failed Charleigh.<\/p>\n
All that\u2019s left now is for ordinary citizens to rally together and do the government\u2019s job for it\u2014taking care of the community\u2019s sickest and most vulnerable.<\/p>\n
That should never be the system in British Columbia. And yet, under this government, somehow it is.<\/p>\n","protected":false},"excerpt":{"rendered":"Critics say the government has abandoned compassion as Charleigh Pollock\u2019s family turns to donations for her only life-extending…\n","protected":false},"author":2,"featured_media":11901,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[59],"tags":[97,252,253],"class_list":["post-11900","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health-care","tag-health","tag-health-care","tag-healthcare"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/11900","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=11900"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/11900\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media\/11901"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media?parent=11900"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/categories?post=11900"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/tags?post=11900"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}