Australians living with motor neurone disease (MND) will now have cheaper access to treatment through the Pharmaceutical Benefits Scheme \u2013 carrying forward Neale Daniher\u2019s extraordinary legacy.<\/p>\n
Tofersen (Qalsody) will be listed for the first time to treat MND patients with a form of amyotrophic lateral sclerosis (ALS) which affects about 2800 Australians and 90 per cent of MND cases.<\/p>\n
About 70 eligible patients will see the cost of each script fall from $28,600 to just $25 \u2013 or $7.70 with a concession card.<\/p>\n
The drop to $25 marks a 99 per cent drop in price alone.<\/p>\n
The progressive neurological condition damages nerve cells that control muscle movement and can affect a person\u2019s ability to move, speak, swallow and breathe, leading to increased disability and loss of independence over time.<\/p>\n
The drug Qalsody is a targeted treatment for patients with a rare genetic form of ALS that reduces the production of a protein, known as SOD1.<\/p>\n
It offers a treatment option for patients with limited therapies by aiming to slow progress of the disease and help patients maintain function longer.<\/p>\n
Macquarie University Hospital Head of Neurology Dominic Rowe said MND was one of the most devastating neurological diseases encountered, affecting not only patients but entire families. <\/p>\n
\u201cDespite advances in care, the impact of MND in Australia continues to grow,\u201d he said.<\/p>\n
\u201cFor people living with SOD1-ALS, today\u2019s announcement is particularly significant because we now have access to a therapy specifically designed to target the underlying genetic cause of their disease. <\/p>\n
\u201cThis represents the culmination of more than three decades of research since the SOD1 gene was first identified as a cause of inherited MND.\u201d<\/p>\n
Health Minister Mark Butler said MND was a heartbreaking insidious disease that Australians were all too familiar with.<\/p>\n
\u201cThe listing of Qalsody for ALS on the PBS is a game changer for Australian patients,\u201d he said.<\/p>\n
\u201cWith every investment the Albanese Government makes towards accelerating the development and delivery of new treatments for MND, we hope to honour the great legacy of Neale Daniher.\u201d<\/p>\n
Mr Butler said the Federal Government recently committed $40m to establish the Neale Daniher MND Clinical Network \u2013 to strengthen its efforts to find new therapies and improve quality of life for people living with MND.<\/p>\n
\u201cThe new listing of Qalsody on the PBS for patients with ALS, is also ensuring Neale\u2019s extraordinary legacy will continue to make a difference in the lives of Australians living with MND,\u201d he said.<\/p>\n","protected":false},"excerpt":{"rendered":"Australians living with motor neurone disease (MND) will now have cheaper access to treatment through the Pharmaceutical Benefits…\n","protected":false},"author":2,"featured_media":596551,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[33],"tags":[294052,271669,294020,294015,294048,294038,294001,7616,17311,41051,84619,294012,61925,294005,294007,294044,294041,281706,294053,294026,273377,294047,294046,288584,273331,294006,294029,294004,294050,294062,542,82959,57429,32933,85,294023,20919,536,24369,294036,294028,4187,294032,294042,294056,294060,112547,227753,134,294034,294059,25993,294037,265592,279845,424,294039,294064,524,27617,294003,294010,294021,279859,294055,71163,294018,294025,294008,294063,240141,294035,294002,294030,111,168183,139,69,6293,5864,384,294043,13194,294011,294049,4993,1518,161242,294027,294058,294024,265789,294017,294016,294061,119755,261628,294019,265788,294033,273337,294031,294040,294051,294009,273380,294013,294022,294057,294045,294014,1865,294054,2766],"class_list":["post-596550","post","type-post","status-publish","format-standard","has-post-thumbnail","category-medication","tag-mnd-drug","tag-s-ability","tag-s-announcement","tag-s-extraordinary-legacy","tag-s-legacy","tag-28k-to-25","tag-7-70","tag-7616","tag-17311","tag-41051","tag-40m","tag-600-to-just-25","tag-61925","tag-99pc","tag-a-99","tag-a-cause","tag-a-concession-card-the-drop","tag-a-difference","tag-a-drug","tag-a-form","tag-a-game-changer","tag-a-heartbreaking-insidious-disease","tag-a-landmark-change","tag-a-person","tag-a-protein","tag-a-rare-genetic-form","tag-a-targeted-treatment","tag-a-therapy","tag-a-treatment-option","tag-about-2800-australians","tag-access","tag-advances","tag-als","tag-amyotrophic-lateral-sclerosis","tag-australia","tag-australian-patients","tag-australians","tag-care","tag-cent","tag-cent-drop","tag-cheaper-access","tag-cost","tag-each-script-fall","tag-eligible-mnd-patients","tag-entire-families","tag-every-investment","tag-function","tag-game-changer","tag-health","tag-health-minister-mark-butler","tag-increased-disability-and-loss","tag-independence","tag-inherited-mnd","tag-its-efforts","tag-just-25","tag-life","tag-limited-therapies","tag-macquarie-university-hospital-head","tag-medication","tag-mnd","tag-mnd-cases-about-70-eligible-patients","tag-mnd-patients","tag-mnd-treatment-drug","tag-more-than-28","tag-more-than-three-decades","tag-motor-neurone-disease","tag-mr-butler","tag-muscle-movement","tag-neale","tag-neale-daniher","tag-nerve-cells","tag-neurology-dominic-rowe","tag-new-therapies","tag-new-treatments","tag-new-zealand","tag-newswire-news","tag-newzealand","tag-nz","tag-patients","tag-pbs","tag-people","tag-price-alone-the","tag-progress","tag-progressive-neurological-condition","tag-qalsody","tag-quality","tag-research","tag-script","tag-sod1-als","tag-sod1-it","tag-the-albanese-government","tag-the-cost","tag-the-culmination","tag-the-development-and-delivery","tag-the-disease","tag-the-federal-government","tag-the-first-time","tag-the-great-legacy","tag-the-impact","tag-the-listing","tag-the-lives","tag-the-most-devastating-neurological-diseases","tag-the-neale-daniher-mnd-clinical-network","tag-the-new-listing","tag-the-pbs","tag-the-pharmaceutical-benefits-scheme","tag-the-production","tag-the-sod1-gene","tag-the-underlying-genetic-cause","tag-their-disease","tag-time-the-drug-qalsody","tag-today","tag-tofersen","tag-treatment"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/596550","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=596550"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/596550\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/596551"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=596550"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=596550"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=596550"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}