{"id":664518,"date":"2025-12-03T21:46:04","date_gmt":"2025-12-03T21:46:04","guid":{"rendered":"https:\/\/microscopemedia.com\/?p=664518"},"modified":"2025-12-03T21:46:04","modified_gmt":"2025-12-03T21:46:04","slug":"ministrul-sanatatii-anunta-un-acces-mai-facil-la-tratament-pentru-pacientii-cu-boli-rare-indicatiile-noului-protocol","status":"publish","type":"post","link":"https:\/\/microscopemedia.com\/?p=664518","title":{"rendered":"Ministrul S\u0103n\u0103t\u0103\u021bii anun\u021b\u0103 un acces mai facil la tratament pentru pacien\u021bii cu boli rare. Indica\u021biile noului protocol"},"content":{"rendered":"<div><img decoding=\"async\" src=\"https:\/\/microscopemedia.com\/wp-content\/uploads\/2025\/12\/ministrul-sanatatii-anunta-un-acces-mai-facil-la-tratament-pentru-pacientii-cu-boli-rare-indicatiile-noului-protocol.jpg\" class=\"ff-og-image-inserted\"><\/div>\n<p id=\"p-0\"><em><span>\u201e\u00cempreun\u0103 cu speciali\u0219tii din s\u0103n\u0103tate \u0219i \u00een dialog permanent cu asocia\u021biile de pacien\u021bi, am decis actualizarea protocolului pentru DCI Ivacaftorum (\u2026).<\/span><\/em><\/p>\n<p id=\"p-1\"><span><em>Timp de prea mult timp, accesul la tratament a depins de o list\u0103 fix\u0103 de muta\u021bii. Copii \u0219i adul\u021bi cu muta\u021bii rare, de\u0219i aveau aceea\u0219i boal\u0103 \u0219i acelea\u0219i complica\u021bii, erau exclu\u0219i doar pentru c\u0103 muta\u021bia lor nu ap\u0103rea \u00eentr-un tabel\u201d<\/em>, a transmis Rogobete, \u00eentr-un mesaj publicat pe Facebook.&nbsp;<\/span><\/p>\n<p id=\"p-2\">El a anun\u021bat c\u0103 noul protocol stabilit de<span> Ministerul S\u0103n\u0103t\u0103\u021bii \u0219i CNAS introduce o nou\u0103 regul\u0103:<\/span><\/p>\n<p id=\"p-3\"><em><span>\u201eOrice pacient cu cel pu\u021bin o muta\u021bie NON\u2013clasa I devine eligibil pentru tratament compensat. <\/span><span>Aceast\u0103 modificare deschide accesul la tratament pentru zeci de pacien\u021bi cu muta\u021bii rare, pacien\u021bi care p\u00e2n\u0103 acum nu aveau nicio op\u021biune modern\u0103. Pentru unii dintre ei, schimbarea poate preveni un transplant pulmonar. Pentru al\u021bii, poate \u00eensemna o via\u021b\u0103 normal\u0103. Pentru to\u021bi, \u00eenseamn\u0103 speran\u021b\u0103 real\u0103 \u0219i \u00eencredere \u00een sistemul de s\u0103n\u0103tate\u201d,<\/span><\/em><span> a declarat Rogobete.&nbsp;<\/span><\/p>\n<p id=\"p-4\">Acesta a mai inclus \u0219i indica\u021bii terapeutice specifice:<\/p>\n<ul>\n<li><span><strong>monoterapie pentru copii mai mari <\/strong>de 12 luni \u0219i care c\u00e2nt\u0103resc mai mult de 7 kg; adolescen\u021bi \u0219i adul\u021bi cu fibroz\u0103 chistic\u0103 \u0219i muta\u021bii de clasa III (G551D, G1244E, G1349D, G178R, G551S, S1251N, S1255P, S549N, S549R).<\/span><\/li>\n<li><span><strong>monoterapie pentru adul\u021bi<\/strong> peste v\u00e2rsta de 18 ani cu muta\u021bia R117H.<\/span><\/li>\n<li><span><strong>asociere cu ivacaftor\/tezacaftor\/elexacaftor<\/strong> pentru pacien\u021bii cu v\u00e2rste de 2 ani sau mai mari de 2 ani, cu cel pu\u021bin&nbsp;<\/span><span>o muta\u021bie NON\u2013clasa I.<\/span><\/li>\n<\/ul>\n<p id=\"p-5\">&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u201e\u00cempreun\u0103 cu speciali\u0219tii din s\u0103n\u0103tate \u0219i \u00een dialog permanent cu asocia\u021biile de pacien\u021bi, am decis actualizarea protocolului pentru DCI Ivacaftorum (\u2026). Timp de prea mult timp, accesul la tratament a &hellip; <a href=\"https:\/\/microscopemedia.com\/?p=664518\" class=\"more-link\">Read More<\/a><\/p>\n","protected":false},"author":1,"featured_media":664519,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"Default","format":"standard","meta":[],"categories":[1],"tags":[],"_links":{"self":[{"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/posts\/664518"}],"collection":[{"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=664518"}],"version-history":[{"count":0,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/posts\/664518\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/media\/664519"}],"wp:attachment":[{"href":"https:\/\/microscopemedia.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=664518"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=664518"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=664518"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}