{"id":3815,"date":"2020-02-03T15:28:33","date_gmt":"2020-02-03T13:28:33","guid":{"rendered":"http:\/\/life.karpat.in.ua\/?p=3815"},"modified":"2020-02-03T15:31:31","modified_gmt":"2020-02-03T13:31:31","slug":"sma-lotto-szaz-raszorulo-gyerek-ingyen-kapja-meg-a-vilag-legdragabb-gyogyszeret","status":"publish","type":"post","link":"https:\/\/life.karpat.in.ua\/?p=3815&lang=hu","title":{"rendered":"SMA-lott\u00f3: sz\u00e1z r\u00e1szorul\u00f3 gyerek ingyen kapja meg a vil\u00e1g legdr\u00e1g\u00e1bb gy\u00f3gyszer\u00e9t"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\"> Vil\u00e1gszerte 100 beteg csecsem\u0151 \u00e9s kisgyerek juthat hozz\u00e1 ingyen a vil\u00e1g legdr\u00e1g\u00e1bb gy\u00f3gyszer\u00e9hez a Novartis sv\u00e1jci gy\u00f3gyszergy\u00e1rt\u00f3 j\u00f3volt\u00e1b\u00f3l. A c\u00e9g sorsol\u00e1ssal d\u00f6nti el, hogy ki kapja meg az SMA (spinalis muscularis atrophia, azaz&nbsp;gerincvel\u0151i eredet\u0171 izomsorvad\u00e1s) kezel\u00e9s\u00e9re szolg\u00e1l\u00f3 k\u00e9sz\u00edtm\u00e9nyt. Az egyenl\u0151re csak az Egyes\u00fclt \u00c1llamokban t\u00f6rzsk\u00f6nyvezett Zolgensma nev\u0171 g\u00e9nter\u00e1pi\u00e1s gy\u00f3gyszer \u00e1ra 2,1 milli\u00f3 doll\u00e1r.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"683\" src=\"http:\/\/life.karpat.in.ua\/wp-content\/uploads\/2020\/02\/zongelsma-1024x683.jpg\" alt=\"\" class=\"wp-image-3818\" srcset=\"https:\/\/life.karpat.in.ua\/wp-content\/uploads\/2020\/02\/zongelsma-1024x683.jpg 1024w, https:\/\/life.karpat.in.ua\/wp-content\/uploads\/2020\/02\/zongelsma-300x200.jpg 300w, https:\/\/life.karpat.in.ua\/wp-content\/uploads\/2020\/02\/zongelsma-768x512.jpg 768w, https:\/\/life.karpat.in.ua\/wp-content\/uploads\/2020\/02\/zongelsma.jpg 1260w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"> H\u00e9tf\u0151t\u0151l kezd\u0151d\u0151en a Novartis n\u00e9h\u00e1ny hetente ki fog sorsolni egy gyereket, aki ingyen megkapja a k\u00e9sz\u00edtm\u00e9nyt. Noha a c\u00e9g szerint a kezdem\u00e9nyez\u00e9s r\u00e9v\u00e9n vil\u00e1gszerte tudnak seg\u00edteni a csal\u00e1dokon, a p\u00e1cienseket k\u00e9pvisel\u0151 csoportok hangs\u00falyozz\u00e1k, hogy a sorsol\u00e1sos rendszer nem oldja meg a magas k\u00f6lts\u00e9gek \u00e9s a hi\u00e1nyz\u00f3 hat\u00f3s\u00e1gi j\u00f3v\u00e1hagy\u00e1sok probl\u00e9m\u00e1j\u00e1t.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> M\u00falt heti bejelent\u00e9se szerint a Novartis 7,1 milli\u00e1rd doll\u00e1r profitot k\u00f6nyvelt el 2019-ben, \u00e9s a Zolgensm\u00e1t nevezte meg az egyik legf\u0151bb bev\u00e9telforr\u00e1sak\u00e9nt. A v\u00e1llalat ugyanakkor a gy\u00e1rt\u00e1si kapacit\u00e1sra hivatkozva elmondta, hogy nem tud alacsonyabb \u00e1ron t\u00f6bb d\u00f3zist gy\u00e1rtani. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> A vil\u00e1gszerte nagyj\u00e1b\u00f3l 8-10 ezer emberb\u0151l egyet \u00e9rint\u0151 SMA egy ritka genetikai betegs\u00e9g, l\u00e9nyege a gerincvel\u0151 v\u00e1zizmokat mozgat\u00f3 idegsejtjeinek funkci\u00f3kies\u00e9se, ami az izommozg\u00e1sok gyeng\u00fcl\u00e9s\u00e9hez, elveszt\u00e9s\u00e9hez, majd kezel\u00e9s n\u00e9lk\u00fcl a l\u00e9gz\u0151izmok b\u00e9nul\u00e1sa miatti hal\u00e1lhoz vezet. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Forr\u00e1s:  MTA\/dpa <\/p>\n","protected":false},"excerpt":{"rendered":"<p>100 beteg csecsem\u0151 \u00e9s kisgyerek juthat hozz\u00e1 ingyen a vil\u00e1g legdr\u00e1g\u00e1bb gy\u00f3gyszer\u00e9hez a sv\u00e1jci Novartis gy\u00f3gyszergy\u00e1rt\u00f3 c\u00e9g j\u00f3volt\u00e1b\u00f3l.<\/p>\n","protected":false},"author":10,"featured_media":3819,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[41,594,49,39],"tags":[610,1853,990],"class_list":["post-3815","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-cikkek","category-egeszseg","category-hirek","category-vilag","tag-gyerekek","tag-gyogyszer","tag-gyogyulas"],"_links":{"self":[{"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/posts\/3815","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/users\/10"}],"replies":[{"embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=3815"}],"version-history":[{"count":0,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/posts\/3815\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/media\/3819"}],"wp:attachment":[{"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=3815"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=3815"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=3815"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}