SMA hastal\u0131\u011f\u0131 T\u00fcrkiye\u2019nin kanayan yaras\u0131 haline geldi. Devlet ila\u00e7lar\u0131 kar\u015f\u0131lam\u0131yor, aileler de kendi imkanlar\u0131yla tedavi paras\u0131 toplamaya \u00e7al\u0131\u015f\u0131yor. CHP Bal\u0131kesir Milletvekili Fikret \u015eahin, “Sa\u011fl\u0131k Bakan\u0131 Beyaz Reform\u2019dan bahsediyor ancak SMA hastalar\u0131n\u0131n yak\u0131nlar\u0131 pazarda, cami avlular\u0131nda, sokakta, toplu ta\u015f\u0131ma ara\u00e7lar\u0131n\u0131n arkas\u0131na reklam vererek ba\u011f\u0131\u015flarla ila\u00e7 paralar\u0131n\u0131 \u00e7\u0131kartmaya \u00e7al\u0131\u015f\u0131yor” dedi.<\/b><\/p>\n
SMA hastal\u0131\u011f\u0131 T\u00fcrkiye’nin kanayan yaras\u0131 haline geldi. Devlet ila\u00e7lar\u0131 kar\u015f\u0131lam\u0131yor, aileler de kendi imkanlar\u0131yla tedavi paras\u0131 toplamaya \u00e7al\u0131\u015f\u0131yor.<\/p>\n
CHP Bal\u0131kesir Milletvekili Fikret \u015eahin, \u201cSa\u011fl\u0131k Bakan\u0131 Beyaz Reform’dan bahsediyor ancak SMA hastalar\u0131n\u0131n yak\u0131nlar\u0131 pazarda, cami avlular\u0131nda, sokakta, toplu ta\u015f\u0131ma ara\u00e7lar\u0131n\u0131n arkas\u0131na reklam vererek ba\u011f\u0131\u015flarla ila\u00e7 paralar\u0131n\u0131 \u00e7\u0131kartmaya \u00e7al\u0131\u015f\u0131yor” dedi.<\/p>\n
\u015eahin, \u201cSMA hastalar\u0131na sahip \u00e7\u0131kmak vatanda\u015f\u0131n de\u011fil, Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131’n\u0131n g\u00f6revidir. SMA’l\u0131 \u00e7ocuklar i\u00e7in daha \u00f6nce olumlu sonu\u00e7lanm\u0131\u015f t\u00fcm tedavi y\u00f6ntemi \u00fccretleri Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131 taraf\u0131ndan kar\u015f\u0131lanmal\u0131 ve bu ailelere yap\u0131lan zul\u00fcm art\u0131k ortadan kald\u0131r\u0131lmal\u0131d\u0131r\u201d a\u00e7\u0131klamas\u0131 yapt\u0131.<\/p>\n
\u201cA\u0130LELER KADER\u0130YLE BA\u015e BA\u015eBA\u015eA\u201d<\/strong><\/p>\n SMA tedavisi i\u00e7in \u015fimdiye kadar geli\u015ftirilen ve Amerikan G\u0131da ve \u0130la\u00e7 Dairesi (FDA) taraf\u0131ndan onaylanan \u00fc\u00e7 tip ila\u00e7 bulundu\u011funu s\u00f6yleyen \u015eahin, bu ila\u00e7lar\u0131n maliyetlerinin milyon dolarlar\u0131 bulmas\u0131 nedeniyle ailelerin kaderleriyle ba\u015f ba\u015fa b\u0131rak\u0131ld\u0131\u011f\u0131n\u0131 s\u00f6yledi ve \u015f\u00f6yle dedi:<\/p>\n \u201cABD ve Avrupa’da uygulanan Zolgensma isimli tek dozluk ilac\u0131n maliyeti milyon dolarlar\u0131 bulmakta, vatanda\u015flar da yard\u0131m kampanyas\u0131 d\u00fczenlemeye mecbur kalmaktad\u0131r. SMA’l\u0131 yavrular\u0131m\u0131z\u0131n foto\u011fraflar\u0131n\u0131 bir minib\u00fcs\u00fcn arka cam\u0131nda, yollardaki totemler \u00fczerinde, pazar yerlerindeki stantlarda, al\u0131\u015fveri\u015f merkezlerindeki yard\u0131m kumbaralar\u0131 \u00fczerinde ve sosyal medyada g\u00f6r\u00fcyoruz.<\/p>\n Bir taraftan beyaz reform diyeceksiniz di\u011fer taraftan SMA’l\u0131 \u00e7ocuk ve ailelerini \u00e7aresiz kendi ba\u015flar\u0131na yaln\u0131z b\u0131rakacaks\u0131n\u0131z. Yard\u0131m kampanyalar\u0131n\u0131n da suistimallere a\u00e7\u0131k oldu\u011fu g\u00f6z \u00f6n\u00fcne al\u0131nd\u0131\u011f\u0131nda bu evlatlar\u0131m\u0131z\u0131n tedavi ve bak\u0131m masraflar\u0131n\u0131n Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131 taraf\u0131ndan kar\u015f\u0131lanmas\u0131 zorunlu bir hal alm\u0131\u015ft\u0131r.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":" SMA hastal\u0131\u011f\u0131 T\u00fcrkiye\u2019nin kanayan yaras\u0131 haline geldi. Devlet ila\u00e7lar\u0131 kar\u015f\u0131lam\u0131yor, aileler de kendi imkanlar\u0131yla tedavi paras\u0131 toplamaya …<\/p>\n","protected":false},"author":1,"featured_media":42871,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[30],"tags":[1094,188,1564,177,1136],"class_list":["post-42870","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-saglik","tag-aileler","tag-bas","tag-ilac","tag-saglik","tag-sma"],"_links":{"self":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts\/42870","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=42870"}],"version-history":[{"count":1,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts\/42870\/revisions"}],"predecessor-version":[{"id":42872,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts\/42870\/revisions\/42872"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/media\/42871"}],"wp:attachment":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=42870"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=42870"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=42870"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}