{"id":21818,"date":"2025-03-25T10:38:54","date_gmt":"2025-03-25T13:38:54","guid":{"rendered":"https:\/\/sulsc.com\/?p=21818"},"modified":"2025-03-25T10:38:54","modified_gmt":"2025-03-25T13:38:54","slug":"remedio-de-r-7-milhoes-para-doenca-rara-sera-ofertado-pelo-sus","status":"publish","type":"post","link":"https:\/\/sulsc.com\/index.php\/2025\/03\/25\/remedio-de-r-7-milhoes-para-doenca-rara-sera-ofertado-pelo-sus\/","title":{"rendered":"Rem\u00e9dio de R$ 7 milh\u00f5es para doen\u00e7a rara ser\u00e1 ofertado pelo SUS"},"content":{"rendered":"

O Minist\u00e9rio da Sa\u00fade confirmou que a partir deste m\u00eas, o SUS vai fornecer a medica\u00e7\u00e3o Zolgensma para os pacientes com diagn\u00f3stico de AME. A atrofia muscular espinhal tipo 1 \u00e9 uma doen\u00e7a gen\u00e9tica rara que afeta os neur\u00f4nios, compromete a respira\u00e7\u00e3o, a degluti\u00e7\u00e3o e os movimentos.<\/p>\n

Em v\u00eddeo, postado nas redes sociais, o ministro da Sa\u00fade, Alexandre Padilha, disse que o rem\u00e9dio custa cerca de R$ 7 milh\u00f5es. O fornecimento ser\u00e1 poss\u00edvel depois de um acordo de parceria entre o governo e a ind\u00fastria farmac\u00eautica internacional.<\/p>\n

Para o fornecimento, foram cadastrados 28 centros especializados de sa\u00fade no pa\u00eds e atualizado o Protocolo Cl\u00ednico e Diretrizes Terap\u00eauticas (PCDT) de AME, para que crian\u00e7as com a doen\u00e7a possam ter acesso a\u00a0medicamento.<\/p>\n

\"\"<\/p>\n

Medica\u00e7\u00e3o de dose \u00fanica<\/strong><\/p>\n

O Zolgensma \u00e9 um medicamento dose \u00fanica via intravenosa. Esse medicamento \u00e9 diferente dos demais j\u00e1 incorporados ao SUS para os tipos 1 e 2 de AME. A estimativa \u00e9 que cerca de 1,5 mil pessoas tenham o diagn\u00f3stico no Brasil.<\/p>\n

\u00c9 indicado para o tratamento de crian\u00e7as com AME do tipo 1, com at\u00e9 seis meses de idade, que estejam fora de ventila\u00e7\u00e3o invasiva acima de 16 horas por dia.<\/p>\n

A AME ainda n\u00e3o tem cura. As terapias existentes tendem a estabilizar a progress\u00e3o da doen\u00e7a, por isso a import\u00e2ncia da administra\u00e7\u00e3o precoce do medicamento.<\/p>\n","protected":false},"excerpt":{"rendered":"

O Minist\u00e9rio da Sa\u00fade confirmou que a partir deste m\u00eas, o SUS vai fornecer a medica\u00e7\u00e3o Zolgensma para os pacientes com diagn\u00f3stico de AME. A atrofia muscular espinhal tipo 1 \u00e9 uma doen\u00e7a gen\u00e9tica rara que afeta os neur\u00f4nios, compromete a respira\u00e7\u00e3o, a degluti\u00e7\u00e3o e os movimentos. Em v\u00eddeo, postado nas redes sociais, o ministro …<\/p>\n

Rem\u00e9dio de R$ 7 milh\u00f5es para doen\u00e7a rara ser\u00e1 ofertado pelo SUS<\/span> Read More »<\/a><\/p>\n","protected":false},"author":3,"featured_media":21819,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","footnotes":""},"categories":[1],"tags":[486],"yoast_head":"\nRem\u00e9dio de R$ 7 milh\u00f5es para doen\u00e7a rara ser\u00e1 ofertado pelo SUS -<\/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:\/\/sulsc.com\/index.php\/2025\/03\/25\/remedio-de-r-7-milhoes-para-doenca-rara-sera-ofertado-pelo-sus\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rem\u00e9dio de R$ 7 milh\u00f5es para doen\u00e7a rara ser\u00e1 ofertado pelo SUS -\" \/>\n<meta property=\"og:description\" content=\"O Minist\u00e9rio da Sa\u00fade confirmou que a partir deste m\u00eas, o SUS vai fornecer a medica\u00e7\u00e3o Zolgensma para os pacientes com diagn\u00f3stico de AME. A atrofia muscular espinhal tipo 1 \u00e9 uma doen\u00e7a gen\u00e9tica rara que afeta os neur\u00f4nios, compromete a respira\u00e7\u00e3o, a degluti\u00e7\u00e3o e os movimentos. 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