{"id":412748,"date":"2019-12-19T14:02:02","date_gmt":"2019-12-19T13:02:02","guid":{"rendered":"http:\/\/hudo.com\/si\/?p=412748"},"modified":"2019-12-19T14:02:02","modified_gmt":"2019-12-19T13:02:02","slug":"zdravilo-zolgensma-ki-ga-je-prejel-tudi-kris-bodo-brezplacno-delili","status":"publish","type":"post","link":"https:\/\/hudo.com\/si\/zdrav-duh-telo\/zdravilo-zolgensma-ki-ga-je-prejel-tudi-kris-bodo-brezplacno-delili\/","title":{"rendered":"Zdravilo zolgensma, ki ga je prejel tudi Kris, bodo delili brezpla\u010dno"},"content":{"rendered":"

Zolgensma, ki ga bolnik prejme z infuzijo, je trenutno najdra\u017eje zdravilo na svetu, odmerek za enega bolnika stane 2,1 milijona dolarjev.<\/p>\n

Kot so za STA sporo\u010dili iz Novartisa, bo program namenjen bolnikom s spinalno mi\u0161i\u010dno atrofijo (SMA), ki so mlaj\u0161i od dveh let in \u017eivijo v dr\u017eavah, kjer zdravilo za to redko gensko bolezen \u0161e ni odobreno.<\/p>\n

Zdravilo je trenutno odobreno samo v ZDA, v Evropi in na Japonskem pa naj bi odlo\u010ditev o odobritvi sprejeli prihodnje leto.<\/p>\n

V AveXisu na\u010drtujejo, da bi program postal dolgoro\u010den, dodatne odmerke naj bi dodajali vsakih \u0161est mesecev glede na potrebe bolnikov in zmogljivosti proizvodnje.<\/p>\n

V Novartisu se ob tem zavedajo, da program, v katerega bodo bolniki vklju\u010deni na podlagi anonimnega izbora, ne bo re\u0161itev za vse dru\u017eine po svetu, zato si prizadevajo za pove\u010danje proizvodnje ter oblikovanje trajnih in eti\u010dnih re\u0161itev za raz\u0161iritev globalnega dostopa do zdravila. Zolgensmo za zdaj proizvajajo v eni tovarni, prizadevajo pa si, da bi prihodnje leto dobili dovoljenje za proizvodnjo \u0161e v dveh obratih.<\/p>\n

Slovenska javnost je za zdravilo zolgensma izvedela zaradi de\u010dka Krisa Zudicha z Obale, za katerega so bila v le nekaj dneh zbrana sredstva za zdravljenje v ZDA. Mali Kris je novembra na kliniki v Los Angelesu prejel zdravilo, mesec dni po terapiji pa je napredek o\u010diten.<\/p>\n

23-mese\u010dni Kris namre\u010d lahko \u017ee nekaj minut sam sedi, za\u010denja se tudi sam hraniti. Zdravnik in star\u0161i ugotavljajo, da la\u017eje diha, glas se mu je okrepil. De\u010dek je \u010dedalje dejavnej\u0161i in \u017ee sam posega po igra\u010dah. Vse bolj spodbudni so tudi krvni izvidi, je v sredo poro\u010dala TV Slovenija.<\/p>\n","protected":false},"excerpt":{"rendered":"

Farmacevtska dru\u017eba Novartis namerava prihodnje leto brezpla\u010dno razdeliti 100 odmerkov izjemno dragega zdravila zolgensma za otroke s spinalno mi\u0161i\u010dno atrofijo. Kot so sporo\u010dili iz \u0161vicarske dru\u017ebe, bo Novartisov oddelek AveXis, ki je razvil zdravilo, prvih 50 odmerkov razdelil v prvi polovici leta, preostalih 50 pa do konca leta.<\/p>\n","protected":false},"author":5,"featured_media":407285,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[15050,7770,1595,14807,15424],"source":[4511],"supertag":[],"acf":[],"yoast_head":"\nZdravilo zolgensma, ki ga je prejel tudi Kris, bodo delili brezpla\u010dno<\/title>\n<meta name=\"description\" content=\"Novartis namerava prihodnje leto brezpla\u010dno razdeliti 100 odmerkov izjemno dragega zdravila zolgensma za otroke s spinalno mi\u0161i\u010dno atrofijo.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/hudo.com\/si\/zdrav-duh-telo\/zdravilo-zolgensma-ki-ga-je-prejel-tudi-kris-bodo-brezplacno-delili\/\" \/>\n<meta property=\"og:locale\" content=\"sl_SI\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Zdravilo zolgensma, ki ga je prejel tudi Kris, bodo delili brezpla\u010dno\" \/>\n<meta property=\"og:description\" content=\"Novartis namerava prihodnje leto brezpla\u010dno razdeliti 100 odmerkov izjemno dragega zdravila zolgensma za otroke s spinalno mi\u0161i\u010dno atrofijo.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/hudo.com\/si\/zdrav-duh-telo\/zdravilo-zolgensma-ki-ga-je-prejel-tudi-kris-bodo-brezplacno-delili\/\" \/>\n<meta property=\"og:site_name\" content=\"Hudo Slovenija\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/hudo.si\" \/>\n<meta property=\"article:published_time\" content=\"2019-12-19T13:02:02+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/hudo.com\/si\/wp-content\/uploads\/sites\/2\/2019\/09\/kris.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"537\" \/>\n\t<meta property=\"og:image:height\" content=\"546\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"A. G., STA\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@hudo_si\" \/>\n<meta name=\"twitter:site\" content=\"@hudo_si\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"A. G., STA\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"1 minuta\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/hudo.com\/si\/zdrav-duh-telo\/zdravilo-zolgensma-ki-ga-je-prejel-tudi-kris-bodo-brezplacno-delili\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/hudo.com\/si\/zdrav-duh-telo\/zdravilo-zolgensma-ki-ga-je-prejel-tudi-kris-bodo-brezplacno-delili\/\"},\"author\":{\"name\":\"A. 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