{"id":10037,"date":"2026-03-21T15:00:32","date_gmt":"2026-03-21T15:00:32","guid":{"rendered":"https:\/\/greatbuttonhk.com\/?p=10037"},"modified":"2026-03-21T15:01:09","modified_gmt":"2026-03-21T15:01:09","slug":"cf-patient-trikafta-drug-denied-aus-visa","status":"publish","type":"post","link":"https:\/\/greatbuttonhk.com\/index.php\/2026\/03\/21\/cf-patient-trikafta-drug-denied-aus-visa\/","title":{"rendered":"\u5973\u5b50\u60a3\u7f55\u898b\u75be\u75c5\u7372\u65b0\u85e5\u91cd\u751f \u8d74\u6fb3\u5de5\u4f5c\u5922\u537b\u56e0\u85e5\u8cbb\u88ab\u62d2\u7c3d\u8b49"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">\u64da BBC \u4eca\u65e5\uff083 \u6708 21 \u65e5\uff09\u5831\u5c0e\uff0c\u82f1\u683c\u862d\u96c5\u606f\u58eb\u90e1\uff08Essex\uff09\u5e02\u93ae Benfleet \u4e00\u540d 23 \u6b72\u5973\u5b50 Regan Sparks \u60a3\u6709\u56ca\u816b\u6027\u7e96\u7dad\u5316\uff08cystic fibrosis\uff0c\u7c21\u7a31 CF\uff09\uff0c\u7576\u521d\u88ab\u9810\u8a08\u53ea\u80fd\u6d3b\u5230 40 \u591a\u6b72\uff0c\u4f46\u81ea 2020 \u5e74\u958b\u59cb\u670d\u7528\u65b0\u85e5\u5f8c\uff0c\u4eba\u751f\u51fa\u73fe\u91cd\u5927\u8f49\u8b8a\u3002\u4e0d\u904e\uff0c\u5979\u8a08\u5283\u524d\u5f80\u6fb3\u6d32\u5de5\u4f5c\u7684\u5922\u60f3\uff0c\u537b\u56e0\u85e5\u7269\u8cbb\u7528\u904e\u9ad8\u800c\u88ab\u62d2\u7c3d\u8b49\u3002<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Regan \u8868\u793a\uff0c\u8a72\u85e5\u7269\u70ba\u5979\u5e36\u4f86\u300c\u6539\u8b8a\u4eba\u751f\u300d\uff08&#8221;life-changing&#8221;\uff09\u7684\u8f49\u8b8a\u3002\u670d\u85e5\u5f8c\u5979\u5065\u5eb7\u5927\u5e45\u6539\u5584\uff0c\u4e0d\u4f46\u627e\u5230\u5de5\u4f5c\u3001\u5efa\u7acb\u611f\u60c5\u95dc\u4fc2\uff0c\u66f4\u958b\u59cb\u8dd1\u6b65\u53ca\u8a08\u5283\u9577\u9014\u65c5\u884c\uff0c\u751a\u81f3\u66fe\u5922\u60f3\u524d\u5f80\u6fb3\u6d32\u5de5\u4f5c\u4e00\u5e74\u3002\u7136\u800c\uff0c\u6fb3\u6d32\u7c3d\u8b49\u8a2d\u6709\u91ab\u7642\u6210\u672c\u4e0a\u9650\u898f\u5b9a\uff0c\u7533\u8acb\u4eba\u5728\u7c3d\u8b49\u671f\u9593\u53ef\u80fd\u5c0d\u7576\u5730\u91ab\u7642\u7cfb\u7d71\u9020\u6210\u7684\u958b\u652f\u4e0d\u5f97\u8d85\u904e\u7d04 86,000 \u6fb3\u5143\uff08\u7d04 45,700 \u82f1\u938a\uff09\u3002\u4f46 Regan \u6240\u9700\u85e5\u7269 Trikafta \u6bcf\u5e74\u8cbb\u7528\u9ad8\u9054\u7d04 250,000 \u6fb3\u5143\uff08\u7d04 133,000 \u82f1\u938a\uff09\u800c\u9060\u8d85\u6a19\u6e96\uff0c\u6700\u7d42\u5c0e\u81f4\u7533\u8acb\u88ab\u62d2\u3002<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u56ca\u816b\u6027\u7e96\u7dad\u5316\u662f\u4e00\u7a2e\u907a\u50b3\u75c5\uff0c\u6703\u4ee4\u9ad4\u5167\u7522\u751f\u9ecf\u7a20\u5206\u6ccc\u7269\uff0c\u5f71\u97ff\u80ba\u90e8\u53ca\u6d88\u5316\u7cfb\u7d71\u3002Regan \u51fa\u751f\u5f8c 24 \u5c0f\u6642\u5167\u4fbf\u5df2\u63a5\u53d7\u8178\u9053\u624b\u8853\uff0c\u7ae5\u5e74\u5927\u90e8\u5206\u6642\u9593\u5728\u91ab\u9662\u5ea6\u904e\u3002\u5979\u5f62\u5bb9\u904e\u53bb\u751f\u6d3b\u8d77\u4f0f\u5f88\u5927\uff0c\u76f4\u81f3 NHS \u6279\u51c6\u4f7f\u7528\u7a81\u7834\u6027\u85e5\u7269 Trikafta\uff08\u4ea6\u7a31 Kaftrio\uff09\u5f8c\uff0c\u60c5\u6cc1\u624d\u51fa\u73fe\u8f49\u6a5f\u3002\u4e4b\u5f8c\u5979\u958b\u59cb\u8dd1\u6b65\uff0c\u4e26\u8a08\u5283\u4eca\u5e74\u524d\u5f80\u7d10\u7d04\u53c3\u52a0\u99ac\u62c9\u677e\u3002\u5979\u56de\u61b6\u5152\u6642\u66fe\u900f\u904e\u6148\u5584\u6a5f\u69cb Make-A-Wish Foundation \u5230\u8a2a\u904e\u7d10\u7d04\uff0c\u7576\u6642\u300c\u88ab\u8996\u70ba\u5782\u5371\u5152\u7ae5\u300d\uff08&#8221;classed as a dying child&#8221;\uff09\u3002\u5982\u4eca\u518d\u6b21\u524d\u5f80\u6311\u6230\u99ac\u62c9\u677e\uff0c\u5979\u5f62\u5bb9\u9019\u662f\u4eba\u751f\u7684\u300c\u5b8c\u6574\u5faa\u74b0\u300d\uff08&#8221;full-circle\u201d\uff09\u7684\u4e00\u523b\u3002<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Regan \u65bc 2023 \u5e74\u7533\u8acb\u6fb3\u6d32\u5de5\u4f5c\u5047\u671f\u7c3d\u8b49\uff0c\u4e26\u5b8c\u6210\u6307\u5b9a\u9ad4\u6aa2\u3002\u60df\u4e00\u5e74\u5f8c\u624d\u5f97\u77e5\u7533\u8acb\u88ab\u62d2\uff0c\u5176\u5f8c\u5373\u4f7f\u63d0\u4ea4\u4f86\u81ea\u528d\u6a4b\u91ab\u7642\u5718\u968a\u53ca\u6fb3\u6d32\u7d44\u7e54 CF Together \u7684\u652f\u6301\u4fe1\uff0c\u4ecd\u518d\u6b21\u88ab\u62d2\u3002\u5979\u8868\u793a\uff0c\u81ea\u5df1\u8d70\u4e86\u5f88\u9577\u7684\u8def\u52aa\u529b\u8b8a\u5f97\u5065\u5eb7\uff0c\u4e5f\u4e0d\u6bd4\u5225\u4eba\u66f4\u6162\u6216\u66f4\u5dee\uff0c\u4f46\u300c\u53ea\u56e0\u4e00\u4e9b\u7121\u6cd5\u63a7\u5236\u7684\u4e8b\u60c5\u800c\u5728\u7d19\u9762\u4e0a\u88ab\u62d2\u300d\uff08&#8221;just on paper you&#8217;re denying me for something that&#8217;s completely out of my control\u201d\uff09\uff0c\u611f\u89ba\u5c31\u50cf\u300c\u6674\u5929\u9739\u9742\u300d\uff08&#8221;a kick in the teeth&#8221;\uff09\u3002\u5979\u53c8\u8868\u793a\uff1a\u300c\u6211\u5f9e\u4f86\u6c92\u6709\u8b93\u75be\u75c5\u963b\u6b62\u6211\u505a\u4efb\u4f55\u4e8b\u60c5\uff0c\u5b83\u5f9e\u672a\u4e3b\u5c0e\u904e\u6211\u7684\u6c7a\u5b9a\u6216\u5922\u60f3\u3002\u300d\uff08&#8221;I&#8217;ve never ever let my CF stop me do anything. 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\u65e5\uff09\u5831\u5c0e\uff0c\u82f1\u683c\u862d\u96c5\u606f\u58eb\u90e1\uff08Essex\uff09\u5e02\u93ae Benfleet \u4e00\u540d 23 \u6b72\u5973\u5b50 Regan Sparks \u60a3\u6709\u56ca\u816b\u6027\u7e96\u7dad\u5316\uff08cystic fibrosis\uff0c\u7c21\u7a31 CF\uff09\uff0c\u7576\u521d\u88ab\u9810\u8a08\u53ea\u80fd\u6d3b\u5230 40 \u591a\u6b72\uff0c\u4f46\u81ea 2020 \u5e74\u958b\u59cb\u670d\u7528\u65b0\u85e5\u5f8c\uff0c\u4eba\u751f\u51fa\u73fe\u91cd\u5927\u8f49\u8b8a\u3002\u4e0d\u904e\uff0c\u5979\u8a08\u5283\u524d\u5f80\u6fb3\u6d32\u5de5\u4f5c\u7684\u5922\u60f3\uff0c\u537b\u56e0\u85e5\u7269\u8cbb\u7528\u904e\u9ad8\u800c\u88ab\u62d2\u7c3d\u8b49\u3002 Regan 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&hellip;<\/p>\n","protected":false},"author":1,"featured_media":10039,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_sb_show_comment_boards":false,"ngg_post_thumbnail":0,"footnotes":""},"categories":[58,64],"tags":[],"class_list":["post-10037","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-healthcare","category-uknews"],"_links":{"self":[{"href":"https:\/\/greatbuttonhk.com\/index.php\/wp-json\/wp\/v2\/posts\/10037","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/greatbuttonhk.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/greatbuttonhk.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/greatbuttonhk.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/greatbuttonhk.com\/index.php\/wp-json\/wp\/v2\/comments?post=10037"}],"version-history":[{"count":4,"href":"https:\/\/greatbuttonhk.com\/index.php\/wp-json\/wp\/v2\/posts\/10037\/revisions"}],"predecessor-version":[{"id":10044,"href":"https:\/\/greatbuttonhk.com\/index.php\/wp-json\/wp\/v2\/posts\/10037\/revisions\/10044"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/greatbuttonhk.com\/index.php\/wp-json\/wp\/v2\/media\/10039"}],"wp:attachment":[{"href":"https:\/\/greatbuttonhk.com\/index.php\/wp-json\/wp\/v2\/media?parent=10037"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/greatbuttonhk.com\/index.php\/wp-json\/wp\/v2\/categories?post=10037"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/greatbuttonhk.com\/index.php\/wp-json\/wp\/v2\/tags?post=10037"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}