{"id":22058,"date":"2012-02-24T06:08:49","date_gmt":"2012-02-24T09:08:49","guid":{"rendered":"http:\/\/www.inclusive.org.br\/?p=22058"},"modified":"2012-02-24T06:08:49","modified_gmt":"2012-02-24T09:08:49","slug":"no-sus-falta-prevencao-e-tratamento-para-doencas-geneticas","status":"publish","type":"post","link":"https:\/\/inclusivenews.com.br\/?p=22058","title":{"rendered":"No SUS, falta preven\u00e7\u00e3o e tratamento para doen\u00e7as gen\u00e9ticas"},"content":{"rendered":"<figure id=\"attachment_19281\" aria-describedby=\"caption-attachment-19281\" style=\"width: 240px\" class=\"wp-caption alignleft\"><a href=\"http:\/\/www.inclusivenews.com.br\/wp-content\/uploads\/2011\/04\/saude.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-19281\" title=\"Sa\u00fade - uma cruz vermelha feita por band-aids vermelhos.\" src=\"http:\/\/inclusivenews.com.br\/wp-content\/uploads\/2011\/04\/saude-300x225.jpg\" alt=\"Sa\u00fade - uma cruz vermelha feita por band-aids vermelhos.\" width=\"240\" height=\"180\" \/><\/a><figcaption id=\"caption-attachment-19281\" class=\"wp-caption-text\"> <\/figcaption><\/figure>\n<p><strong>Por Claudia Collucci<br \/>\nna Folha de S\u00e3o Paulo<\/strong><\/p>\n<p>Tr\u00eas anos depois de anunciado, um programa do Minist\u00e9rio da Sa\u00fade que prometia prevenir, diagnosticar e tratar doen\u00e7as gen\u00e9ticas no SUS ainda n\u00e3o saiu do papel.<\/p>\n<p>A portaria que instituiu a Pol\u00edtica Nacional de Aten\u00e7\u00e3o Integral em Gen\u00e9tica Cl\u00ednica no SUS foi publicada no &#8220;Di\u00e1rio Oficial&#8221; e tinha previs\u00e3o de vigorar a partir de 2009.<\/p>\n<p>\u00c0 \u00e9poca, o governo federal garantiu que haveria recursos para o programa. &#8220;Ficamos quatro anos elaborando a portaria. Depois disso, nada aconteceu&#8221;, afirma o geneticista Salmo Raskin, ex-presidente da Sociedade Brasileira de Gen\u00e9tica M\u00e9dica.<\/p>\n<p>No pr\u00f3ximo dia 29, haver\u00e1 uma audi\u00eancia p\u00fablica na C\u00e2mara dos Deputados para debater o assunto. A quest\u00e3o \u00e9 complexa e esbarra no alto custo dos rem\u00e9dios para algumas dessas doen\u00e7as, como a de Gaucher e a mucopolissacaridose tipo 1, cujo tratamento chega a R$ 30 mil mensais por paciente.<\/p>\n<p>&#8220;O Minist\u00e9rio da Sa\u00fade se apavorou com a ideia de mais pacientes pedindo rem\u00e9dios&#8221;, analisa Raskin. A s\u00edndrome de Williams-Beuren \u00e9 um bom exemplo. Causado pela perda de alguns genes no cromossomo 7, o problema afeta um a cada 20 mil nascidos vivos.<\/p>\n<p>SEM ASSIST\u00caNCIA<\/p>\n<p>A garota J\u00e9ssica Nunes s\u00f3 teve a s\u00edndrome diagnosticada quando tinha sete anos, embora desde beb\u00ea j\u00e1 apresentasse sinais, como dificuldade de alimenta\u00e7\u00e3o e atrasos de desenvolvimento. &#8220;O pediatra me dava bronca porque ela n\u00e3o crescia. Os m\u00e9dicos diziam que ela n\u00e3o tinha nada&#8221;, conta a m\u00e3e, J\u00f4.<\/p>\n<p>Por conta da s\u00edndrome, J\u00e9ssica desenvolveu um problema card\u00edaco grave que demandou um transplante de cora\u00e7\u00e3o. Morreu 19 dias depois da cirurgia. A m\u00e3e fundou uma associa\u00e7\u00e3o para ajudar outras fam\u00edlias com o mesmo problema. Mais de mil crian\u00e7as est\u00e3o cadastradas -s\u00f3 um ter\u00e7o delas j\u00e1 teve acesso a exames gen\u00e9ticos.<\/p>\n<p>Embora n\u00e3o exista uma medica\u00e7\u00e3o espec\u00edfica, a identifica\u00e7\u00e3o \u00e9 fundamental para que as complica\u00e7\u00f5es da s\u00edndrome sejam tratadas. &#8220;Muitas crian\u00e7as desenvolvem hipertens\u00e3o precocemente, problemas renais, altera\u00e7\u00f5es de comportamento e est\u00e3o totalmente desassistidas&#8221;, afirma a geneticista Chong Ae-Kim, do Instituto da Crian\u00e7a do Hospital das Cl\u00ednicas de S\u00e3o Paulo.<\/p>\n<p>Segundo ela, os servi\u00e7os de gen\u00e9tica do SUS est\u00e3o em hospitais-escolas, e a verba para os atendimentos v\u00eam de linhas de pesquisa. O geneticista Marcial Francis Galera, presidente da SBGM, confirma o drama. &#8220;Os pacientes do SUS est\u00e3o perdidos, desesperados, sem ter para onde ir.&#8221;<\/p>\n<p>A estimativa da OMS \u00e9 que 5% das gesta\u00e7\u00f5es resultam no nascimento de uma crian\u00e7a com anomalias gen\u00e9ticas.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Tr\u00eas anos depois de anunciado, um programa do Minist\u00e9rio da Sa\u00fade que prometia prevenir, diagnosticar e tratar doen\u00e7as gen\u00e9ticas no SUS ainda n\u00e3o saiu do papel. Por Claudia Colluci, na Folha de S\u00e3o Paulo.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-container-style":"default","site-container-layout":"default","site-sidebar-layout":"default","disable-article-header":"default","disable-site-header":"default","disable-site-footer":"default","disable-content-area-spacing":"default","footnotes":""},"categories":[11,4,37],"tags":[],"class_list":["post-22058","post","type-post","status-publish","format-standard","hentry","category-direitos-humanos","category-noticias","category-saude"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>No SUS, falta preven\u00e7\u00e3o e tratamento para doen\u00e7as gen\u00e9ticas -<\/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:\/\/inclusivenews.com.br\/?p=22058\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"No SUS, falta preven\u00e7\u00e3o e tratamento para doen\u00e7as gen\u00e9ticas -\" \/>\n<meta property=\"og:description\" content=\"Tr\u00eas anos depois de anunciado, um programa do Minist\u00e9rio da Sa\u00fade que prometia prevenir, diagnosticar e tratar doen\u00e7as gen\u00e9ticas no SUS ainda n\u00e3o saiu do papel. 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