{"id":34887,"date":"2025-03-26T16:30:07","date_gmt":"2025-03-26T19:30:07","guid":{"rendered":"https:\/\/www.grupomedcof.com.br\/blog\/?p=34887"},"modified":"2025-03-27T10:29:47","modified_gmt":"2025-03-27T13:29:47","slug":"ministerio-saude-terapia-genica-ame-sus","status":"publish","type":"post","link":"https:\/\/www.grupomedcof.com.br\/blog\/ministerio-saude-terapia-genica-ame-sus\/","title":{"rendered":"Minist\u00e9rio da Sa\u00fade viabiliza tratamento inovador no SUS para crian\u00e7as com AME"},"content":{"rendered":"<div id=\"ez-toc-container\" class=\"ez-toc-v2_0_74 counter-hierarchy ez-toc-counter ez-toc-transparent ez-toc-container-direction\">\n<div class=\"ez-toc-title-container\">\n<p class=\"ez-toc-title\" style=\"cursor:inherit\">Sum\u00e1rio<\/p>\n<span class=\"ez-toc-title-toggle\"><a href=\"#\" class=\"ez-toc-pull-right ez-toc-btn ez-toc-btn-xs ez-toc-btn-default ez-toc-toggle\" aria-label=\"Alternar tabela de conte\u00fado\"><span class=\"ez-toc-js-icon-con\"><span class=\"\"><span class=\"eztoc-hide\" style=\"display:none;\">Toggle<\/span><span class=\"ez-toc-icon-toggle-span\"><svg style=\"fill: #999;color:#999\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" class=\"list-377408\" width=\"20px\" height=\"20px\" viewBox=\"0 0 24 24\" fill=\"none\"><path d=\"M6 6H4v2h2V6zm14 0H8v2h12V6zM4 11h2v2H4v-2zm16 0H8v2h12v-2zM4 16h2v2H4v-2zm16 0H8v2h12v-2z\" fill=\"currentColor\"><\/path><\/svg><svg style=\"fill: #999;color:#999\" class=\"arrow-unsorted-368013\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"10px\" height=\"10px\" viewBox=\"0 0 24 24\" version=\"1.2\" baseProfile=\"tiny\"><path d=\"M18.2 9.3l-6.2-6.3-6.2 6.3c-.2.2-.3.4-.3.7s.1.5.3.7c.2.2.4.3.7.3h11c.3 0 .5-.1.7-.3.2-.2.3-.5.3-.7s-.1-.5-.3-.7zM5.8 14.7l6.2 6.3 6.2-6.3c.2-.2.3-.5.3-.7s-.1-.5-.3-.7c-.2-.2-.4-.3-.7-.3h-11c-.3 0-.5.1-.7.3-.2.2-.3.5-.3.7s.1.5.3.7z\"\/><\/svg><\/span><\/span><\/span><\/a><\/span><\/div>\n<nav><ul class='ez-toc-list ez-toc-list-level-1 ' ><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class=\"ez-toc-link ez-toc-heading-1\" href=\"https:\/\/www.grupomedcof.com.br\/blog\/ministerio-saude-terapia-genica-ame-sus\/#O_que_e_a_AME_e_por_que_essa_terapia_e_um_avanco\" >O que \u00e9 a AME e por que essa terapia \u00e9 um avan\u00e7o?<\/a><\/li><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class=\"ez-toc-link ez-toc-heading-2\" href=\"https:\/\/www.grupomedcof.com.br\/blog\/ministerio-saude-terapia-genica-ame-sus\/#Acesso_ao_tratamento_pelo_SUS\" >Acesso ao tratamento pelo SUS<\/a><\/li><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class=\"ez-toc-link ez-toc-heading-3\" href=\"https:\/\/www.grupomedcof.com.br\/blog\/ministerio-saude-terapia-genica-ame-sus\/#O_impacto_na_qualidade_de_vida_das_criancas\" >O impacto na qualidade de vida das crian\u00e7as<\/a><\/li><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class=\"ez-toc-link ez-toc-heading-4\" href=\"https:\/\/www.grupomedcof.com.br\/blog\/ministerio-saude-terapia-genica-ame-sus\/#Perspectivas_para_o_futuro\" >Perspectivas para o futuro<\/a><\/li><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class=\"ez-toc-link ez-toc-heading-5\" href=\"https:\/\/www.grupomedcof.com.br\/blog\/ministerio-saude-terapia-genica-ame-sus\/#Seja_um_MedCofer\" >Seja um MedCofer!<\/a><\/li><\/ul><\/nav><\/div>\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"576\" src=\"https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/03\/Blog-MedCof-76-1024x576.png\" alt=\"\" class=\"wp-image-34888\" srcset=\"https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/03\/Blog-MedCof-76-1024x576.png 1024w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/03\/Blog-MedCof-76-300x169.png 300w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/03\/Blog-MedCof-76-768x432.png 768w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/03\/Blog-MedCof-76-1536x864.png 1536w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/03\/Blog-MedCof-76-747x420.png 747w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/03\/Blog-MedCof-76-150x84.png 150w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/03\/Blog-MedCof-76-696x392.png 696w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/03\/Blog-MedCof-76-1068x601.png 1068w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/03\/Blog-MedCof-76.png 1920w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>O <strong>Minist\u00e9rio da Sa\u00fade<\/strong> anunciou a incorpora\u00e7\u00e3o de um tratamento inovador no <strong>Sistema \u00danico de Sa\u00fade (SUS)<\/strong> para crian\u00e7as com <strong>Atrofia Muscular Espinhal (AME)<\/strong> tipo 1. Pela primeira vez, uma terapia g\u00eanica ser\u00e1 disponibilizada na rede p\u00fablica, trazendo esperan\u00e7a para fam\u00edlias que lutam contra essa doen\u00e7a rara e progressiva.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-o-que-e-a-ame-e-por-que-essa-terapia-e-um-avanco\"><span class=\"ez-toc-section\" id=\"O_que_e_a_AME_e_por_que_essa_terapia_e_um_avanco\"><\/span><strong>O que \u00e9 a AME e por que essa terapia \u00e9 um avan\u00e7o?<\/strong><span class=\"ez-toc-section-end\"><\/span><\/h2>\n\n\n\n<p>A <strong>Atrofia Muscular Espinhal (AME)<\/strong> \u00e9 uma condi\u00e7\u00e3o gen\u00e9tica grave que afeta os neur\u00f4nios motores, comprometendo a capacidade de movimenta\u00e7\u00e3o, respira\u00e7\u00e3o e degluti\u00e7\u00e3o. A forma mais severa, a AME tipo 1, manifesta-se nos primeiros meses de vida e, sem tratamento adequado, pode levar \u00e0 morte precoce.<\/p>\n\n\n\n<p>O novo tratamento incorporado ao SUS \u00e9 a <strong>terapia g\u00eanica<\/strong> com <strong>Zolgensma <\/strong>(<em>onasemnogeno abeparvoveque<\/em>), um medicamento de dose \u00fanica que corrige o gene defeituoso, restaurando a produ\u00e7\u00e3o da prote\u00edna essencial para a sobreviv\u00eancia dos neur\u00f4nios motores. Estudos demonstram que crian\u00e7as tratadas precocemente apresentam melhora na fun\u00e7\u00e3o muscular e maior sobrevida, reduzindo a necessidade de suporte ventilat\u00f3rio.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/www.grupomedcof.com.br\/cofletters\/\" target=\"_blank\" rel=\" noreferrer noopener\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"320\" src=\"https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/02\/Banner-MedCof-Plus-2200x460-11-1024x320.png\" alt=\"\" class=\"wp-image-33723\" srcset=\"https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/02\/Banner-MedCof-Plus-2200x460-11-1024x320.png 1024w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/02\/Banner-MedCof-Plus-2200x460-11-300x94.png 300w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/02\/Banner-MedCof-Plus-2200x460-11-768x240.png 768w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/02\/Banner-MedCof-Plus-2200x460-11-1536x480.png 1536w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/02\/Banner-MedCof-Plus-2200x460-11-2048x640.png 2048w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/02\/Banner-MedCof-Plus-2200x460-11-1343x420.png 1343w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/02\/Banner-MedCof-Plus-2200x460-11-150x47.png 150w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/02\/Banner-MedCof-Plus-2200x460-11-696x218.png 696w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/02\/Banner-MedCof-Plus-2200x460-11-1068x334.png 1068w, https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/02\/Banner-MedCof-Plus-2200x460-11-1920x600.png 1920w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><\/figure>\n\n\n\n<h2 class=\"wp-block-heading\"><span class=\"ez-toc-section\" id=\"Acesso_ao_tratamento_pelo_SUS\"><\/span><strong>Acesso ao tratamento pelo SUS<\/strong><span class=\"ez-toc-section-end\"><\/span><\/h2>\n\n\n\n<p>Segundo o Minist\u00e9rio da Sa\u00fade, a terapia ser\u00e1 disponibilizada para <strong>crian\u00e7as com at\u00e9 seis meses <\/strong>de idade, que atendam aos crit\u00e9rios estabelecidos pelo <strong>Protocolo Cl\u00ednico e Diretrizes Terap\u00eauticas (PCDT)<\/strong>. A inclus\u00e3o do medicamento na rede p\u00fablica \u00e9 um marco para o Brasil, colocando o pa\u00eds entre as na\u00e7\u00f5es que oferecem o tratamento mais avan\u00e7ado do mundo para a <strong>AME<\/strong>.<\/p>\n\n\n\n<p>O fornecimento da terapia pelo SUS elimina a barreira do alto custo, que no mercado privado ultrapassa <strong>R$ 7 milh\u00f5es por dose<\/strong>. Agora, fam\u00edlias que antes precisavam recorrer \u00e0 Justi\u00e7a para garantir o acesso ao medicamento poder\u00e3o contar com um tratamento <strong>gratuito e acess\u00edvel<\/strong>.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-o-impacto-na-qualidade-de-vida-das-criancas\"><span class=\"ez-toc-section\" id=\"O_impacto_na_qualidade_de_vida_das_criancas\"><\/span><strong>O impacto na qualidade de vida das crian\u00e7as<\/strong><span class=\"ez-toc-section-end\"><\/span><\/h2>\n\n\n\n<p>A chegada da terapia g\u00eanica ao SUS representa uma mudan\u00e7a na hist\u00f3ria natural da <strong>AME tipo 1<\/strong>. Com diagn\u00f3stico precoce e tratamento adequado, as crian\u00e7as t\u00eam a chance de alcan\u00e7ar <strong>marcos motores antes imposs\u00edveis<\/strong>, como sentar, engatinhar e at\u00e9 andar. Al\u00e9m disso, h\u00e1 uma redu\u00e7\u00e3o significativa nas interna\u00e7\u00f5es e complica\u00e7\u00f5es respirat\u00f3rias, proporcionando mais qualidade de vida e independ\u00eancia.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-perspectivas-para-o-futuro\"><span class=\"ez-toc-section\" id=\"Perspectivas_para_o_futuro\"><\/span><strong>Perspectivas para o futuro<\/strong><span class=\"ez-toc-section-end\"><\/span><\/h2>\n\n\n\n<p>A inclus\u00e3o dessa terapia inovadora no SUS abre caminho para a amplia\u00e7\u00e3o do <strong>acesso a outros tratamentos gen\u00e9ticos no Brasil<\/strong>. Com a evolu\u00e7\u00e3o da medicina personalizada, a expectativa \u00e9 que mais doen\u00e7as raras possam ser <strong>tratadas de forma eficaz na rede p\u00fablica<\/strong>.<\/p>\n\n\n\n<p>O avan\u00e7o \u00e9 uma conquista para as fam\u00edlias, profissionais de sa\u00fade e pesquisadores, refor\u00e7ando o compromisso do SUS com a equidade e a inova\u00e7\u00e3o na sa\u00fade p\u00fablica.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><span class=\"ez-toc-section\" id=\"Seja_um_MedCofer\"><\/span><strong>Seja um MedCofer!<\/strong><span class=\"ez-toc-section-end\"><\/span><\/h2>\n\n\n\n<p>Quer alcan\u00e7ar a aprova\u00e7\u00e3o nas provas de resid\u00eancia m\u00e9dica? Ent\u00e3o seja um\u00a0<a href=\"https:\/\/www.grupomedcof.com.br\/home\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>MedCofer<\/strong><\/a>! Aqui te ajudaremos na busca da aprova\u00e7\u00e3o com conte\u00fados de qualidade e uma metodologia que j\u00e1 aprovou mais de 10 mil residentes no pa\u00eds! Por fim, acesse o nosso<a href=\"https:\/\/www.youtube.com\/@GrupoMedcof\/featured\" target=\"_blank\" rel=\"noreferrer noopener\">\u00a0<strong>canal do youtube\u00a0<\/strong><\/a>para ver o nosso material.<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"SingularCast T2 Ep.18 - A vida acontece (e est\u00e1 tudo bem)\" width=\"696\" height=\"392\" src=\"https:\/\/www.youtube.com\/embed\/8fZIIk60qmY?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>O Minist\u00e9rio da Sa\u00fade anunciou a incorpora\u00e7\u00e3o de um tratamento inovador no Sistema \u00danico de Sa\u00fade (SUS) para crian\u00e7as com Atrofia Muscular Espinhal (AME) tipo 1. Pela primeira vez, uma terapia g\u00eanica ser\u00e1 disponibilizada na rede p\u00fablica, trazendo esperan\u00e7a para fam\u00edlias que lutam contra essa doen\u00e7a rara e progressiva. O que \u00e9 a AME e [&hellip;]<\/p>\n","protected":false},"author":23,"featured_media":34888,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[240,173],"tags":[1460,805],"ppma_author":[3618],"class_list":{"0":"post-34887","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-noticias","8":"category-novidades","9":"tag-noticias","10":"tag-sus"},"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v24.3 (Yoast SEO v27.5) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Minist\u00e9rio da Sa\u00fade disponibiliza terapia g\u00eanica para AME tipo 1 no SUS | Blog MedCof<\/title>\n<meta name=\"description\" content=\"O Minist\u00e9rio da Sa\u00fade incorporou ao SUS a terapia g\u00eanica Zolgensma para o tratamento da AME tipo 1. 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Saiba como funciona e quem pode ter acesso.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.grupomedcof.com.br\/blog\/ministerio-saude-terapia-genica-ame-sus\/\" \/>\n<meta property=\"og:site_name\" content=\"Blog de Medcof: conte\u00fados, editais, revalida e mais!\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/MedCofQbank\/\" \/>\n<meta property=\"article:published_time\" content=\"2025-03-26T19:30:07+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-03-27T13:29:47+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.grupomedcof.com.br\/blog\/wp-content\/uploads\/2025\/03\/Blog-MedCof-76.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1920\" \/>\n\t<meta property=\"og:image:height\" content=\"1080\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Lu\u00edsa Porto\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Lu\u00edsa Porto\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. tempo de leitura\" \/>\n\t<meta name=\"twitter:data2\" content=\"4 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/ministerio-saude-terapia-genica-ame-sus\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/ministerio-saude-terapia-genica-ame-sus\\\/\"},\"author\":{\"name\":\"Lu\u00edsa Porto\",\"@id\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/#\\\/schema\\\/person\\\/d755ffce500bd0766bbf0e4e6572518f\"},\"headline\":\"Minist\u00e9rio da Sa\u00fade viabiliza tratamento inovador no SUS para crian\u00e7as com AME\",\"datePublished\":\"2025-03-26T19:30:07+00:00\",\"dateModified\":\"2025-03-27T13:29:47+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/ministerio-saude-terapia-genica-ame-sus\\\/\"},\"wordCount\":547,\"publisher\":{\"@id\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/ministerio-saude-terapia-genica-ame-sus\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/wp-content\\\/uploads\\\/2025\\\/03\\\/Blog-MedCof-76.png\",\"keywords\":[\"not\u00edcias\",\"SUS\"],\"articleSection\":[\"Not\u00edcias\",\"Novidades\"],\"inLanguage\":\"pt-BR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/ministerio-saude-terapia-genica-ame-sus\\\/\",\"url\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/ministerio-saude-terapia-genica-ame-sus\\\/\",\"name\":\"Minist\u00e9rio da Sa\u00fade disponibiliza terapia g\u00eanica para AME tipo 1 no SUS | Blog MedCof\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/ministerio-saude-terapia-genica-ame-sus\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/ministerio-saude-terapia-genica-ame-sus\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.grupomedcof.com.br\\\/blog\\\/wp-content\\\/uploads\\\/2025\\\/03\\\/Blog-MedCof-76.png\",\"datePublished\":\"2025-03-26T19:30:07+00:00\",\"dateModified\":\"2025-03-27T13:29:47+00:00\",\"description\":\"O Minist\u00e9rio da Sa\u00fade incorporou ao SUS a terapia g\u00eanica Zolgensma para o tratamento da AME tipo 1. 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