{"id":7778,"date":"2025-03-23T18:37:13","date_gmt":"2025-03-23T21:37:13","guid":{"rendered":"https:\/\/maetinganoticias.com\/?p=7778"},"modified":"2025-03-23T18:37:14","modified_gmt":"2025-03-23T21:37:14","slug":"sus-passa-a-oferecer-tratamento-inovador-de-atrofia-muscular-espinhal","status":"publish","type":"post","link":"https:\/\/maetinganoticias.com\/index.php\/2025\/03\/23\/sus-passa-a-oferecer-tratamento-inovador-de-atrofia-muscular-espinhal\/","title":{"rendered":"SUS passa a oferecer tratamento inovador de atrofia muscular espinhal"},"content":{"rendered":"\n<p><strong><em>Doen\u00e7a \u00e9 rara, atingindo menos de 65 pessoas a cada 100 mil indiv\u00edduos<\/em><\/strong><\/p>\n\n\n\n<p><strong>Crian\u00e7as que precisam de tratamento da atrofia muscular espinhal (AME) tipo 1, doen\u00e7a rara que afeta os movimentos do corpo e tamb\u00e9m a respira\u00e7\u00e3o, ter\u00e3o, a partir desta segunda-feira (24), acesso a um tratamento inovador e gratuito pelo Sistema \u00danico de Sa\u00fade. O SUS passar\u00e1 a realizar a terapia gen\u00e9tica com o medicamento Zolgensma, que na rede particular custa em m\u00e9dia R$ 7 milh\u00f5es.<\/strong><img decoding=\"async\" src=\"https:\/\/agenciabrasil.ebc.com.br\/ebc.png?id=1635675&amp;o=node\"><img decoding=\"async\" src=\"https:\/\/agenciabrasil.ebc.com.br\/ebc.gif?id=1635675&amp;o=node\"><\/p>\n\n\n\n<p>\u201c\u00c9 a primeira terapia g\u00eanica que est\u00e1 sendo introduzida no Sistema \u00danico de Sa\u00fade. O SUS passa a fazer parte de um pequeno clube de cinco sistemas p\u00fablicos nacionais no mundo a oferecerem esse medicamento para a sua popula\u00e7\u00e3o\u201d, comemorou o ministro da Sa\u00fade, Alexandre Padilha.<\/p>\n\n\n\n<p>A indica\u00e7\u00e3o desse tipo de terapia \u00e9 para pacientes de at\u00e9 6 meses de idade que n\u00e3o estejam com a ventila\u00e7\u00e3o mec\u00e2nica invasiva acima de 16 horas por dia. De acordo com o Minist\u00e9rio da Sa\u00fade, com a incorpora\u00e7\u00e3o do Zolgensma, o SUS passar\u00e1 a ofertar para AME tipo 1 todas as terapias modificadoras desta doen\u00e7a.<\/p>\n\n\n\n<p>Segundo dados do Instituto Brasileiro de Geografia e Estat\u00edstica (IBGE),&nbsp;<strong>entre os 2,8 milh\u00f5es de brasileiros nascidos vivos em 2023, cerca de 287 foram diagnosticadas coma a doen\u00e7a. Na pr\u00e1tica, o tratamento faz uso do medicamento em substitui\u00e7\u00e3o \u00e0 fun\u00e7\u00e3o de um gene ausente ou que n\u00e3o est\u00e1 funcionando corretamente.<\/strong><\/p>\n\n\n\n<p>A incorpora\u00e7\u00e3o do tratamento foi viabilizada por meio de um acordo firmado com a ind\u00fastria internacional, que condiciona o pagamento ao resultado da terapia no paciente.&nbsp;<\/p>\n\n\n\n<p><strong>\u201cVai seguir de forma permanente a avalia\u00e7\u00e3o do desempenho do medicamento, da melhoria da vida dessa crian\u00e7a e da vida da fam\u00edlia, com marcadores cl\u00ednicos de avalia\u00e7\u00e3o, ao longo do tratamento\u201d, explica o ministro.<\/strong><\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Protocolo<\/h2>\n\n\n\n<p>Para iniciar o tratamento, a fam\u00edlia do paciente deve procurar um dos 28 servi\u00e7os de refer\u00eancia para terapia g\u00eanica de AME, presentes nos estados de Alagoas, Bahia, Cear\u00e1, Distrito Federal, Esp\u00edrito Santo, Goi\u00e1s, Minas Gerais, Mato Grosso, Par\u00e1, Para\u00edba, Pernambuco, Piau\u00ed, Paran\u00e1, Rio de Janeiro, Rio Grande do Norte, Rio Grande do Sul, Santa Catarina e S\u00e3o Paulo.<\/p>\n\n\n\n<p>O paciente ser\u00e1 acolhido e passar\u00e1 por uma triagem orientada pelo&nbsp;<a href=\"https:\/\/www.gov.br\/saude\/pt-br\/assuntos\/pcdt\/a\/atrofia-muscular-espinhal-5q-tipos-1-e-2\/view\" target=\"_blank\" rel=\"noreferrer noopener\">Protocolo Cl\u00ednico e Diretrizes Terap\u00eauticas para Atrofia Muscular Espinhal 5q Tipos 1 e 2<\/a>, estabelecido pelo Minist\u00e9rio da Sa\u00fade. Nas pr\u00f3ximas semanas, tamb\u00e9m ser\u00e1 instalado um comit\u00ea para acompanhamento permanente dos pacientes que far\u00e3o o uso do medicamento de dose \u00fanica.<\/p>\n\n\n\n<p>Antes do acordo, o Zolgensma j\u00e1 era ofertado pelo Minist\u00e9rio da Sa\u00fade em cumprimento a 161 a\u00e7\u00f5es judiciais.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Entenda<\/strong><\/h2>\n\n\n\n<p>A AME \u00e9 uma doen\u00e7a rara que interfere na capacidade de produzir uma prote\u00edna essencial para a sobreviv\u00eancia dos neur\u00f4nios motores, respons\u00e1veis pelos gestos volunt\u00e1rios vitais simples do corpo, como respirar, engolir e se mover. A doen\u00e7a \u00e9 considerada rara, por atingir menos de 65 pessoas em cada 100 mil indiv\u00edduos.<\/p>\n\n\n\n<p>Na rede p\u00fablica, os pacientes de AME tipos 1 e 2, em outras faixas et\u00e1rias, s\u00e3o tratados com os medicamentos de uso cont\u00ednuo nusinersena e risdiplam. Segundo o Minist\u00e9rio da Sa\u00fade, em 2024, esses medicamentos tiveram mais 800 prescri\u00e7\u00f5es emitidas para tratamento.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Doen\u00e7a \u00e9 rara, atingindo menos de 65 pessoas a cada 100 mil indiv\u00edduos Crian\u00e7as que precisam de tratamento da atrofia muscular espinhal (AME) tipo 1, doen\u00e7a rara que afeta os movimentos do corpo e tamb\u00e9m a respira\u00e7\u00e3o, ter\u00e3o, a partir desta segunda-feira (24), acesso a um tratamento inovador e gratuito pelo Sistema \u00danico de Sa\u00fade. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":7779,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_uf_show_specific_survey":0,"_uf_disable_surveys":false,"footnotes":""},"categories":[899],"tags":[1507,1508],"class_list":{"0":"post-7778","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-saude","8":"tag-sus","9":"tag-tratamento-inovador"},"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>SUS passa a oferecer tratamento inovador de atrofia muscular espinhal - Maetinga Not\u00edcias<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/maetinganoticias.com\/index.php\/2025\/03\/23\/sus-passa-a-oferecer-tratamento-inovador-de-atrofia-muscular-espinhal\/\" \/>\n<meta property=\"og:locale\" content=\"pt_BR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"SUS passa a oferecer tratamento inovador de atrofia muscular espinhal - Maetinga Not\u00edcias\" \/>\n<meta property=\"og:description\" content=\"Doen\u00e7a \u00e9 rara, atingindo menos de 65 pessoas a cada 100 mil indiv\u00edduos Crian\u00e7as que precisam de tratamento da atrofia muscular espinhal (AME) tipo 1, doen\u00e7a rara que afeta os movimentos do corpo e tamb\u00e9m a respira\u00e7\u00e3o, ter\u00e3o, a partir desta segunda-feira (24), acesso a um tratamento inovador e gratuito pelo Sistema \u00danico de Sa\u00fade. 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