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At\u00e9 o momento, o HILP j\u00e1 administrou a medica\u00e7\u00e3o em tr\u00eas pacientes, garantindo acesso a um tratamento de alto custo, avaliado em cerca de R$ 7 milh\u00f5es por aplica\u00e7\u00e3o.<\/p>\n\n\n\n
\u201cCada aplica\u00e7\u00e3o refor\u00e7a o compromisso do hospital com o avan\u00e7o da sa\u00fade infantil no Brasil, promovendo o acesso a tratamentos inovadores e melhorando diretamente a qualidade de vida das crian\u00e7as com AME\u201d, destaca a pediatra Lorena Mesquita, coordenadora do Programa AME-PIAU e diretora t\u00e9cnica do HILP.<\/p>\n\n\n\n
Expans\u00e3o no SUS<\/strong><\/p>\n\n\n\n Diante do sucesso do Hospital Infantil Luc\u00eddio Portella, o Minist\u00e9rio da Sa\u00fade tem ampliado a oferta do Zolgensma em todo o pa\u00eds. Atualmente, 28 hospitais est\u00e3o credenciados para administrar o tratamento, com o HILP servindo como refer\u00eancia t\u00e9cnica para a capacita\u00e7\u00e3o de equipes dessas unidades. Hospitais como o Infantil Albert Sabin (CE) e o Universit\u00e1rio Gaffr\u00e9e e Guinle (RJ) j\u00e1 iniciaram as aplica\u00e7\u00f5es, seguindo o modelo adotado no Piau\u00ed.<\/p>\n\n\n\n Al\u00e9m do Zolgensma, o SUS tamb\u00e9m disponibiliza os medicamentos nusinersena (Spinraza) e risdiplam (Evrysdi), garantindo diferentes op\u00e7\u00f5es terap\u00eauticas para pacientes com AME. Isso fortalece o Brasil como refer\u00eancia no tratamento de doen\u00e7as raras.<\/p>\n\n\n\n A AME ainda n\u00e3o tem cura, e os tratamentos dispon\u00edveis buscam estabilizar a progress\u00e3o da doen\u00e7a, tornando essencial a administra\u00e7\u00e3o precoce do medicamento. A AME tipo 1, que representa aproximadamente 60% dos casos, geralmente se manifesta antes dos seis meses de idade.<\/p>\n\n\n\n N\u00e3o h\u00e1 dados exatos sobre quantas pessoas vivem com AME no Brasil. No entanto, estimativas do relat\u00f3rio da Comiss\u00e3o Nacional de Incorpora\u00e7\u00e3o de Tecnologias no SUS (Conitec) indicam que a incid\u00eancia da doen\u00e7a varia entre 4 e 10 casos a cada 100 mil nascidos vivos. O mesmo relat\u00f3rio aponta que, em um per\u00edodo de cinco anos, cerca de 400 pacientes seriam atendidos pelo SUS com essa tecnologia.<\/p>\n","protected":false},"excerpt":{"rendered":" Por Cl\u00e1udia Bezerra O Sistema \u00danico de Sa\u00fade (SUS) tem avan\u00e7ado no tratamento da Atrofia Muscular Espinhal (AME), uma doen\u00e7a gen\u00e9tica rara que compromete a musculatura e fun\u00e7\u00f5es vitais. Com […]<\/p>\n","protected":false},"author":1808,"featured_media":3225,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":[],"categories":[30],"tags":[],"featured_image_urls":{"full":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4.jpg",1280,600,false],"thumbnail":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-150x150.jpg",150,150,true],"medium":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-300x141.jpg",300,141,true],"medium_large":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-768x360.jpg",768,360,true],"large":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-1024x480.jpg",887,416,true],"sgg-420":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-420x197.jpg",420,197,true],"sgg-540":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-540x253.jpg",540,253,true],"sgg-780":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-780x366.jpg",780,366,true],"1536x1536":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4.jpg",1280,600,false],"2048x2048":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4.jpg",1280,600,false],"homepage-slider":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-1270x500.jpg",1270,500,true],"homepage-slider-small":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-947x500.jpg",947,500,true],"page-top":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-947x444.jpg",947,444,true],"page-small":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-624x293.jpg",624,293,true],"loop-main":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-365x240.jpg",365,240,true],"thumb-gallery-widget":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-84x56.jpg",84,56,true]},"post_excerpt_stackable":" Por Cl\u00e1udia Bezerra O Sistema \u00danico de Sa\u00fade (SUS) tem avan\u00e7ado no tratamento da Atrofia Muscular Espinhal (AME), uma doen\u00e7a gen\u00e9tica rara que compromete a musculatura e fun\u00e7\u00f5es vitais. Com a incorpora\u00e7\u00e3o do Zolgensma \u2013 terapia g\u00eanica considerada a mais inovadora para a AME tipo 1 \u2013, o Brasil se tornou um dos poucos pa\u00edses a oferecer esse tratamento gratuitamente. O Hospital Infantil Luc\u00eddio Portella (HILP), no Piau\u00ed, se destaca como refer\u00eancia nacional, sendo o primeiro hospital 100% SUS do pa\u00eds a administrar essa medica\u00e7\u00e3o. Desde sua habilita\u00e7\u00e3o para o procedimento, o HILP tem sido pioneiro na aplica\u00e7\u00e3o do Zolgensma,…<\/p>\n","category_list":"Not\u00edcias<\/a>","author_info":{"name":"herlonpereira","url":"https:\/\/portal.pi.gov.br\/sesapi\/author\/herlonpereira\/"},"comments_num":"0 coment\u00e1rio","featured_image_urls_v2":{"full":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4.jpg",1280,600,false],"thumbnail":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-150x150.jpg",150,150,true],"medium":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-300x141.jpg",300,141,true],"medium_large":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-768x360.jpg",768,360,true],"large":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-1024x480.jpg",887,416,true],"sgg-420":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-420x197.jpg",420,197,true],"sgg-540":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-540x253.jpg",540,253,true],"sgg-780":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-780x366.jpg",780,366,true],"1536x1536":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4.jpg",1280,600,false],"2048x2048":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4.jpg",1280,600,false],"homepage-slider":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-1270x500.jpg",1270,500,true],"homepage-slider-small":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-947x500.jpg",947,500,true],"page-top":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-947x444.jpg",947,444,true],"page-small":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-624x293.jpg",624,293,true],"loop-main":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-365x240.jpg",365,240,true],"thumb-gallery-widget":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4-84x56.jpg",84,56,true]},"post_excerpt_stackable_v2":" Por Cl\u00e1udia Bezerra O Sistema \u00danico de Sa\u00fade (SUS) tem avan\u00e7ado no tratamento da Atrofia Muscular Espinhal (AME), uma doen\u00e7a gen\u00e9tica rara que compromete a musculatura e fun\u00e7\u00f5es vitais. Com a incorpora\u00e7\u00e3o do Zolgensma \u2013 terapia g\u00eanica considerada a mais inovadora para a AME tipo 1 \u2013, o Brasil se tornou um dos poucos pa\u00edses a oferecer esse tratamento gratuitamente. O Hospital Infantil Luc\u00eddio Portella (HILP), no Piau\u00ed, se destaca como refer\u00eancia nacional, sendo o primeiro hospital 100% SUS do pa\u00eds a administrar essa medica\u00e7\u00e3o. Desde sua habilita\u00e7\u00e3o para o procedimento, o HILP tem sido pioneiro na aplica\u00e7\u00e3o do Zolgensma,…<\/p>\n","category_list_v2":"Not\u00edcias<\/a>","author_info_v2":{"name":"herlonpereira","url":"https:\/\/portal.pi.gov.br\/sesapi\/author\/herlonpereira\/"},"comments_num_v2":"0 coment\u00e1rio","jetpack_featured_media_url":"https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hospital-infantil-4.jpg","_links":{"self":[{"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/posts\/3224"}],"collection":[{"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/users\/1808"}],"replies":[{"embeddable":true,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/comments?post=3224"}],"version-history":[{"count":4,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/posts\/3224\/revisions"}],"predecessor-version":[{"id":3232,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/posts\/3224\/revisions\/3232"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/media\/3225"}],"wp:attachment":[{"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/media?parent=3224"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/categories?post=3224"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/tags?post=3224"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}![\"\"](\"https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/03\/hilpaplicacao.jpg\")
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“A incorpora\u00e7\u00e3o definitiva do Zolgensma no SUS e o protagonismo do Hospital Infantil Luc\u00eddio Portella representam um marco na sa\u00fade p\u00fablica brasileira, garantindo que crian\u00e7as com AME tenham uma chance real de vida e desenvolvimento. Mais do que n\u00fameros, cada aplica\u00e7\u00e3o simboliza uma vit\u00f3ria para as fam\u00edlias e para o sistema p\u00fablico de sa\u00fade, demonstrando que a medicina de ponta pode ser acess\u00edvel a todos”, afirma o superintendente de M\u00e9dia e Alta Complexidade da Sesapi, Dirceu Camp\u00ealo.<\/p>\n\n\n\n