{"id":630213,"date":"2026-10-14T09:04:09","date_gmt":"2026-10-14T09:04:09","guid":{"rendered":"https:\/\/www.newsbeep.com\/nz\/630213\/"},"modified":"2026-10-14T09:04:09","modified_gmt":"2026-10-14T09:04:09","slug":"friedrichs-ataxia-teen-urges-andy-burnham-to-get-drug-on-nhs","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/nz\/630213\/","title":{"rendered":"Friedrich&#8217;s ataxia teen urges Andy Burnham to get drug on NHS"},"content":{"rendered":"<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">A teenager fighting for a life-changing drug to be available on the NHS has urged the prime minister for help.<\/p>\n<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">Brogan Johnson, 17, from Leigh-on-Sea in Essex, has a rare genetic disorder called Friedreich&#8217;s ataxia, which affects her nervous system, mobility and heart.<\/p>\n<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">Omaveloxolone, which could slow her condition, costs about \u00a31,000 a day to fund privately in the UK.<\/p>\n<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">&#8220;Every single day I struggle knowing that mums fix everything and I can&#8217;t fix this,&#8221; said Brogan&#8217;s mother, Karly.<\/p>\n<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">The pair delivered a letter to 10 Downing Street on Tuesday, pleading with Andy Burnham to assist Brogan and the 1,100 others living with the life-limiting condition in the UK.<\/p>\n<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">Some of those sufferers joined them at Westminster.<\/p>\n<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">A petition on the matter has already attracted 100,000 signatures, including from ex-heavyweight boxer Frank Bruno.<\/p>\n","protected":false},"excerpt":{"rendered":"A teenager fighting for a life-changing drug to be available on the NHS has urged the prime minister&hellip;\n","protected":false},"author":2,"featured_media":630214,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[33],"tags":[134,524,111,139,69],"class_list":["post-630213","post","type-post","status-publish","format-standard","has-post-thumbnail","category-medication","tag-health","tag-medication","tag-new-zealand","tag-newzealand","tag-nz"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/630213","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=630213"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/630213\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/630214"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=630213"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=630213"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=630213"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}