{"id":5213,"date":"2019-03-10T12:53:55","date_gmt":"2019-03-10T10:53:55","guid":{"rendered":"https:\/\/businessexpress.ro\/?p=5213"},"modified":"2019-03-10T12:54:00","modified_gmt":"2019-03-10T10:54:00","slug":"tratament-inovativ-pentru-o-boala-rara-care-costa-o-avere","status":"publish","type":"post","link":"https:\/\/businessexpress.ro\/ro\/tratament-inovativ-pentru-o-boala-rara-care-costa-o-avere\/","title":{"rendered":"Tratament inovativ pentru  o boala rar\u0103 care cost\u0103 o avere"},"content":{"rendered":"<ul class=\"wp-block-list\"><li>Noi medicamente care trateaz\u0103 afectiunile la nivel genetic, numite terapii genetice, sunt incredibil de promi\u021b\u0103toare. Pretul lor este \u00eens\u0103 unul exorbitant: ar putea costa milioane de dolari. <\/li><li>Multe terapii genetice ar putea fi disponibile \u00een anii urm\u0103tori, dar exper\u021bii spun c\u0103 sistemele medicale din mai multe \u021b\u0103ri nu sunt \u00eenc\u0103 preg\u0103tite s\u0103 le utilizeze.<\/li><li>Noile terapii genetice ar urma s\u0103 pun\u0103 o presiune enorm\u0103 pe asiguratorii priva\u021bi de s\u0103n\u0103tate, dar \u0219i pe programele guvernamentale, urm\u00e2nd ca \u00een final, accesul pacien\u021bilor la tratament s\u0103 fie \u00eengreunat, \u00een contextul \u00een care tot mai multe medicamente pentru boli ereditare, cum ar fi hemofilia, au \u00eenceput deja s\u0103 fie aprobate.<\/li><\/ul>\n\n\n\n<ul class=\"wp-block-gallery columns-0 is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\"><\/ul>\n\n\n\n<ul class=\"wp-block-gallery columns-1 is-cropped wp-block-gallery-2 is-layout-flex wp-block-gallery-is-layout-flex\"><li class=\"blocks-gallery-item\"><figure><img data-recalc-dims=\"1\" decoding=\"async\" width=\"640\" height=\"480\" data-attachment-id=\"5215\" data-permalink=\"https:\/\/businessexpress.ro\/ro\/tratament-inovativ-pentru-o-boala-rara-care-costa-o-avere\/dc118896-679e-48af-9576-428e6f9edeee\/\" data-orig-file=\"https:\/\/i0.wp.com\/businessexpress.ro\/wp-content\/uploads\/2019\/03\/DC118896-679E-48AF-9576-428E6F9EDEEE.jpeg?fit=640%2C480&amp;ssl=1\" data-orig-size=\"640,480\" data-comments-opened=\"0\" data-image-title=\"DC118896-679E-48AF-9576-428E6F9EDEEE\" data-image-description=\"\" data-image-caption=\"\" data-large-file=\"https:\/\/i0.wp.com\/businessexpress.ro\/wp-content\/uploads\/2019\/03\/DC118896-679E-48AF-9576-428E6F9EDEEE.jpeg?fit=640%2C480&amp;ssl=1\" data-src=\"https:\/\/i0.wp.com\/businessexpress.ro\/wp-content\/uploads\/2019\/03\/DC118896-679E-48AF-9576-428E6F9EDEEE.jpeg?resize=640%2C480&#038;ssl=1\" alt=\"\" data-id=\"5215\" data-link=\"https:\/\/businessexpress.ro\/?attachment_id=5215\" class=\"wp-image-5215 lazyload\" data-srcset=\"https:\/\/i0.wp.com\/businessexpress.ro\/wp-content\/uploads\/2019\/03\/DC118896-679E-48AF-9576-428E6F9EDEEE.jpeg?w=640&amp;ssl=1 640w, https:\/\/i0.wp.com\/businessexpress.ro\/wp-content\/uploads\/2019\/03\/DC118896-679E-48AF-9576-428E6F9EDEEE.jpeg?resize=300%2C225&amp;ssl=1 300w\" data-sizes=\"(max-width: 640px) 100vw, 640px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 640px; --smush-placeholder-aspect-ratio: 640\/480;\" \/><\/figure><\/li><\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Ve\u0219ti bune pentru pacien\u021bii care sufer\u0103 de unele boli genetice rare. Un nou tratament medical cu poten\u021bial extraordinar de a trata copiii care sufer\u0103 de atrofie muscular\u0103 spinal\u0103, afec\u0163iune ce \u00eempiedic\u0103 dezvoltarea neuronilor motorii, ar putea fi disponibil \u00eencep\u00e2nd din acest an.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Atrofia muscular\u0103 spinal\u0103 este o tulburare genetic\u0103 care afecteaz\u0103  capacitatea persoanelor de a respira, de a vorbi \u0219i de a se mi\u0219ca. Majoritatea copiilor n\u0103scu\u021bi cu o form\u0103 obi\u0219nuit\u0103 a acesteia mor dup\u0103 v\u00e2rsta de 2 ani.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u00cen prezent, nu exist\u0103 nici un tratament inovativ, ci numai un medicament pentru boala care afecteaz\u0103 aproximativ 10 000 de persoane \u00een SUA, dintr-un num\u0103r de 25.000.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Exist\u0103 \u00eens\u0103 mari probleme legate de acest nou tratament din cauza pretului foarte mare- ar putea costa p\u00e2n\u0103 la 4 milioane de dolari, potrivit produc\u0103torului elve\u021bian care \u00eel de\u021bine, scrie Business Insider. Acest medicament, denumit Zolgensma, face modific\u0103ri la nivel genetic pentru a trata boala, astfel \u00eenc\u00e2t efectul s\u0103 dureze mai mult, \u00een comparatie cu medicamentele tipice, ale c\u0103ror efecte dureaz\u0103 mai pu\u021bin. Statele Unite ale Americii au cele mai mari pre\u021buri ale medicamentelor din lume, dar spre deosebire de alte \u021b\u0103ri, guvernul are un control sc\u0103zut \u00een aceast\u0103 problem\u0103. Acest lucru a dus la o dezbatere f\u0103r\u0103 rezultat \u00een care actorii principali se \u00eentreab\u0103 a cui este vina \u0219i cum se pot schimba lucrurile. \u00cen Europa, unde pre\u021burile medicamentelor sunt reglementate, prima terapie genetic\u0103 a fost un esec comercial, din cauza pre\u021bului extrem de mare. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u00cen Rom\u00e2nia, sute de copii sufer\u0103 de boli rare, tratamentele pentru ei sunt foarte scumpe \u015fi, de cele mai multe ori, nu sunt decontate de stat.<\/p>","protected":false},"excerpt":{"rendered":"<p>Noi medicamente care trateaz\u0103 afectiunile la nivel genetic, numite terapii genetice, sunt incredibil de promi\u021b\u0103toare. Pretul lor este \u00eens\u0103 unul exorbitant: ar putea costa milioane de dolari. Multe terapii genetice ar putea fi disponibile \u00een anii urm\u0103tori, dar exper\u021bii spun c\u0103 sistemele medicale din mai multe \u021b\u0103ri nu sunt \u00eenc\u0103 [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":5214,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"wpzoom_is_breaking":0,"source_url":"","_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[16],"tags":[],"class_list":["post-5213","post","type-post","status-publish","format-standard","has-post-thumbnail","category-international"],"jetpack_publicize_connections":[],"jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paH2fj-1m5","jetpack_featured_media_url":"https:\/\/i0.wp.com\/businessexpress.ro\/wp-content\/uploads\/2019\/03\/BD43ED10-AC4A-47B3-8F78-5134AF29E427.jpeg?fit=640%2C480&ssl=1","_links":{"self":[{"href":"https:\/\/businessexpress.ro\/ro\/wp-json\/wp\/v2\/posts\/5213","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/businessexpress.ro\/ro\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/businessexpress.ro\/ro\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/businessexpress.ro\/ro\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/businessexpress.ro\/ro\/wp-json\/wp\/v2\/comments?post=5213"}],"version-history":[{"count":1,"href":"https:\/\/businessexpress.ro\/ro\/wp-json\/wp\/v2\/posts\/5213\/revisions"}],"predecessor-version":[{"id":5216,"href":"https:\/\/businessexpress.ro\/ro\/wp-json\/wp\/v2\/posts\/5213\/revisions\/5216"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/businessexpress.ro\/ro\/wp-json\/wp\/v2\/media\/5214"}],"wp:attachment":[{"href":"https:\/\/businessexpress.ro\/ro\/wp-json\/wp\/v2\/media?parent=5213"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/businessexpress.ro\/ro\/wp-json\/wp\/v2\/categories?post=5213"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/businessexpress.ro\/ro\/wp-json\/wp\/v2\/tags?post=5213"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}