{"id":48994,"date":"2024-12-08T11:19:42","date_gmt":"2024-12-08T14:19:42","guid":{"rendered":"https:\/\/academiadepacientes.com.br\/?p=48994"},"modified":"2026-02-18T12:49:33","modified_gmt":"2026-02-18T15:49:33","slug":"%f0%9f%9a%a8-ministerio-da-saude-negocia-zolgensma-para-o-sus","status":"publish","type":"post","link":"https:\/\/academiadepacientes.com.br\/?p=48994","title":{"rendered":"\ud83d\udea8 Minist\u00e9rio da Sa\u00fade negocia Zolgensma para o SUS"},"content":{"rendered":"\n<p>O Minist\u00e9rio da Sa\u00fade est\u00e1 perto de finalizar um acordo para disponibilizar o <strong>Zolgensma<\/strong>, medicamento mais caro do mundo, no <strong>Sistema \u00danico de Sa\u00fade (SUS)<\/strong>. O rem\u00e9dio trata a <strong>Atrofia Muscular Espinhal (AME)<\/strong> e custa cerca de <strong>R$ 15 milh\u00f5es por dose<\/strong>.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\ud83d\udcbc <strong>Negocia\u00e7\u00f5es avan\u00e7am com farmac\u00eautica Novartis<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Reuni\u00e3o recente:<\/strong> O Minist\u00e9rio e a Novartis discutiram um <strong>Acordo de Compartilhamento de Riscos (ACR)<\/strong>, que est\u00e1 em an\u00e1lise.<\/li>\n\n\n\n<li><strong>Expectativa:<\/strong> Ambas as partes consideram o di\u00e1logo produtivo e esperam um acordo em breve.<\/li>\n\n\n\n<li><strong>Compromisso:<\/strong> A Novartis prioriza a conclus\u00e3o do processo, enquanto o Minist\u00e9rio destaca sua dedica\u00e7\u00e3o \u00e0s doen\u00e7as raras.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">\ud83e\uddec <strong>Zolgensma: Como funciona?<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Terapia g\u00eanica:<\/strong> Insere o gene ausente nas c\u00e9lulas da medula espinhal para corrigir a defici\u00eancia.<\/li>\n\n\n\n<li><strong>Indica\u00e7\u00e3o:<\/strong> Exclusivo para o tipo 1 da AME, que afeta beb\u00eas de at\u00e9 6 meses.<\/li>\n\n\n\n<li><strong>Resultados:<\/strong> Melhora a sobrevida, reduz ventila\u00e7\u00e3o mec\u00e2nica e promove avan\u00e7os motores.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">\ud83d\udcca <strong>Desafios do fornecimento no SUS<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Log\u00edstica:<\/strong> Monitorar a evolu\u00e7\u00e3o cl\u00ednica dos pacientes \u00e9 complexo e sem precedentes no Brasil.<\/li>\n\n\n\n<li><strong>Crit\u00e9rios:<\/strong> Ainda h\u00e1 d\u00favidas sobre o que ser\u00e1 considerado uma melhora efetiva.<\/li>\n\n\n\n<li><strong>Infraestrutura:<\/strong> Falta de exames gen\u00e9ticos no pa\u00eds dificulta o diagn\u00f3stico de doen\u00e7as raras.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">\u2696\ufe0f <strong>Judicializa\u00e7\u00e3o e custos<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Judicializa\u00e7\u00e3o frequente:<\/strong> Pacientes t\u00eam conseguido acesso ao rem\u00e9dio por meio de decis\u00f5es judiciais.<\/li>\n\n\n\n<li><strong>Pre\u00e7o no SUS:<\/strong> Inicialmente estipulado em <strong>R$ 6,4 milh\u00f5es<\/strong>, foi negociado para <strong>R$ 5,7 milh\u00f5es<\/strong>.<\/li>\n\n\n\n<li><strong>Hist\u00f3rico:<\/strong> Primeira aplica\u00e7\u00e3o no Brasil foi em 2020, em uma beb\u00ea que recebeu uma dose avaliada em R$ 12 milh\u00f5es.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">\ud83e\udde0 <strong>AME em n\u00fameros<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Doen\u00e7a rara:<\/strong> Afeta cerca de 65 pessoas a cada 100 mil no Brasil.<\/li>\n\n\n\n<li><strong>Causa:<\/strong> Altera\u00e7\u00e3o gen\u00e9tica no gene respons\u00e1vel pela produ\u00e7\u00e3o da prote\u00edna SMN, essencial para os neur\u00f4nios motores.<\/li>\n\n\n\n<li><strong>Impactos:<\/strong> Compromete movimentos, respira\u00e7\u00e3o e degluti\u00e7\u00e3o.<\/li>\n<\/ul>\n\n\n\n<p><strong>Conclus\u00e3o:<\/strong> O acordo entre o Minist\u00e9rio da Sa\u00fade e a Novartis pode representar um marco no tratamento de doen\u00e7as raras no Brasil, apesar dos desafios log\u00edsticos e financeiros.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p>Fonte: <a href=\"https:\/\/oglobo.globo.com\/saude\/noticia\/2024\/12\/08\/acordo-avanca-para-remedio-mais-caro-do-mundo-entrar-no-sus.ghtml\">Acordo avan\u00e7a para rem\u00e9dio mais caro do mundo entrar no SUS<\/a> \/ O Globo<\/p>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Minist\u00e9rio da Sa\u00fade negocia Zolgensma no SUS, terapia para AME. Medicamento mais caro do mundo traz desafios log\u00edsticos e avan\u00e7o no cuidado a doen\u00e7as raras.<\/p>\n","protected":false},"author":2,"featured_media":46843,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_uag_custom_page_level_css":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[267,1],"tags":[],"class_list":["post-48994","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-arquivos-de-transicao","category-nao-categorizado","infinite-scroll-item","resize-featured-image"],"aioseo_notices":[],"uagb_featured_image_src":{"full":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2022\/10\/zolgensma.jpg",768,512,false],"thumbnail":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:150\/h:150\/q:mauto\/rt:fill\/g:ce\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2022\/10\/zolgensma.jpg",150,150,true],"medium":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:300\/h:200\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2022\/10\/zolgensma.jpg",300,200,true],"medium_large":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2022\/10\/zolgensma.jpg",768,512,false],"large":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2022\/10\/zolgensma.jpg",768,512,false],"1536x1536":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2022\/10\/zolgensma.jpg",768,512,false],"2048x2048":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2022\/10\/zolgensma.jpg",768,512,false],"mailpoet_newsletter_max":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2022\/10\/zolgensma.jpg",768,512,false]},"uagb_author_info":{"display_name":"Cl\u00e1udio Cordovil","author_link":"https:\/\/academiadepacientes.com.br\/?author=2"},"uagb_comment_info":0,"uagb_excerpt":"Minist\u00e9rio da Sa\u00fade negocia Zolgensma no SUS, terapia para AME. Medicamento mais caro do mundo traz desafios log\u00edsticos e avan\u00e7o no cuidado a doen\u00e7as raras.","_links":{"self":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts\/48994","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=48994"}],"version-history":[{"count":1,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts\/48994\/revisions"}],"predecessor-version":[{"id":48995,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts\/48994\/revisions\/48995"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/media\/46843"}],"wp:attachment":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=48994"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=48994"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=48994"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}