{"id":49599,"date":"2023-08-09T00:06:04","date_gmt":"2023-08-08T21:06:04","guid":{"rendered":"https:\/\/kutaybilen.com.tr\/?p=49599"},"modified":"2023-08-09T00:06:04","modified_gmt":"2023-08-08T21:06:04","slug":"chp-milletvekili-bulut-sma-hastalarinin-ilaca-ulasamamasini-meclis-gundemine-tasidi","status":"publish","type":"post","link":"https:\/\/kutaybilen.com.tr\/?p=49599","title":{"rendered":"CHP Milletvekili Bulut, SMA hastalar\u0131n\u0131n ilaca ula\u015famamas\u0131n\u0131 Meclis g\u00fcndemine ta\u015f\u0131d\u0131"},"content":{"rendered":"

<\/p>\n

CHP Adana Milletvekili Burhanettin Bulut, SMA hastalar\u0131n\u0131n T\u00fcrkiye’de ruhsatl\u0131 tek ilac\u0131 olan ‘Spinraza’ya 3 ayd\u0131r ula\u015famamas\u0131n\u0131 Meclis g\u00fcndemine ta\u015f\u0131d\u0131. Bulut, S\u0131hhat Bakan\u0131 Fahrettin Koca’ya “SMA hastalar\u0131n\u0131n geri \u00f6deme kapsam\u0131nda tek ilac\u0131 olan Spinraza’n\u0131n 3 ayd\u0131r bulunamama m\u00fcnasebeti nedir? SMA hastalar\u0131 ve aileleri yazg\u0131lar\u0131na mi terk edilmi\u015ftir” diye sordu.<\/p>\n

CHP Adana Milletvekili Burhanettin Bulut, Spinal M\u00fcsk\u00fcler Atrofi (SMA) hastalar\u0131n\u0131n meselelerini Meclis g\u00fcndemine ta\u015f\u0131d\u0131. S\u0131hhat Bakan\u0131 Fahrettin Koca’n\u0131n yan\u0131tlamas\u0131 istemiyle TBMM Ba\u015fkanl\u0131\u011f\u0131’na soru \u00f6nergesi veren Bulut, T\u00fcrkiye’de, genetik bir kas hastal\u0131\u011f\u0131 olan SMA’dan etkilenen yakla\u015f\u0131k 3 bin ki\u015finin bulundu\u011funu belirtti. Bulut, \u015funlar\u0131 kaydetti: <\/p>\n

“SA\u011eLIK BAKANLI\u011eI \u0130LACA NE VAK\u0130T ULA\u015eILACA\u011eINA A\u0130T RASTGELE B\u0130R A\u00c7IKLAMA YAPMAMAKTA”<\/strong> <\/p>\n

“Her ya\u015fta ortaya \u00e7\u0131kabilen, ilerleyici ve \u00f6l\u00fcmc\u00fcl bir hastal\u0131k olarak tan\u0131mlanan SMA’n\u0131n d\u00fcnyada g\u00f6r\u00fclme s\u0131kl\u0131\u011f\u0131 10 binde bir iken, T\u00fcrkiye’de 6 binde. 3 farkl\u0131 ilac\u0131 bulunan SMA’n\u0131n, T\u00fcrkiye’de tek ruhsatl\u0131 ilac\u0131, 2017 y\u0131l\u0131ndan bu yana \u00fclkemizde geri \u00f6deme kapsam\u0131nda olan Spinraza isimli ila\u00e7t\u0131r. Lakin aileler 3 ayd\u0131r bu ilaca ula\u015famamaktad\u0131r. S\u0131hhat Bakanl\u0131\u011f\u0131 ilaca ne vakit ula\u015f\u0131laca\u011f\u0131na ait rastgele bir a\u00e7\u0131klama yapmamakta, bu durum \u00e7ocuklar\u0131 daima kas kayb\u0131na u\u011frayan, s\u0131hhat durumu berbatla\u015fan aileleri \u00fcmitsizli\u011fe sevk etmektedir.<\/p>\n

“\u0130LA\u00c7LAR GER\u0130 \u00d6DEME KAPSAMINA ALINACAK MI?”<\/strong> <\/p>\n

Sa\u011fl\u0131k Bakan\u0131 Koca, 2023 y\u0131l\u0131 S\u0131hhat Bakanl\u0131\u011f\u0131 b\u00fct\u00e7e g\u00f6r\u00fc\u015fmelerinde, ‘Bilim \u015euras\u0131’n\u0131n oral kullan\u0131m\u0131 olan ikinci bir ilac\u0131n kullan\u0131m\u0131n\u0131 onaylad\u0131\u011f\u0131n\u0131, ilac\u0131n kullan\u0131ma al\u0131naca\u011f\u0131’ istikametindeki a\u00e7\u0131klamalar\u0131n\u0131 mevcut. Ortadan 8 aydan fazla m\u00fchlet ge\u00e7mesine kar\u015f\u0131n ila\u00e7 \u015fimdi ruhsatland\u0131r\u0131lmam\u0131\u015f ve geri \u00f6deme kapsam\u0131na al\u0131nmam\u0131\u015ft\u0131r. Devletin en temel vazifesi insan\u0131 ya\u015fatmakt\u0131r. SMA’l\u0131 bebekler, ailelerin kendi imkanlar\u0131 \u00e7er\u00e7evesinde d\u00fczenledi\u011fi kampanyalarla de\u011fil; devletin y\u00fck\u00fcml\u00fcl\u00fc\u011f\u00fc olarak ya\u015fat\u0131lmak zorundad\u0131r. SMA hastalar\u0131n\u0131n ailelerinin talebi, Spinraza isimli ilac\u0131n d\u0131\u015f\u0131nda, oral kullan\u0131m avantaj\u0131 olan Risdiplam ile tek seferlik uygulama avantaj\u0131 olan ve sa\u011flam SMN-1 geninin transferini sa\u011flayan Zolgensma’n\u0131n da geri \u00f6deme kapsam\u0131na al\u0131nmas\u0131d\u0131r.<\/p>\n

“\u0130LA\u00c7 3 AYDIR NEDEN YOK?”<\/strong> <\/p>\n

Bulut, S\u0131hhat Bakan\u0131 Koca’ya \u015fu sorular\u0131 y\u00f6neltti: <\/p>\n

“-SMA hastalar\u0131n\u0131n geri \u00f6deme kapsam\u0131nda tek ilac\u0131 olan Spinraza’n\u0131n 3 ayd\u0131r bulunamama gerekesi nedir?<\/p>\n

-SMA hastalar\u0131 ve aileleri yazg\u0131lar\u0131na mi terk edilmi\u015ftir?<\/p>\n

-SMA hastalar\u0131n\u0131n umutla bekledi\u011fi oral kullan\u0131m avantaj\u0131 olan ila\u00e7la ilgili geli\u015fmeler ne istikamettedir? \u0130la\u00e7 \u00fclkemizde ne vakit ruhsat alacakt\u0131r?<\/p>\n

“SMA \u0130LACI NE VAK\u0130T RUHSATLANDIRILACAK?”<\/strong> <\/p>\n

-A\u00e7\u0131klaman\u0131z\u0131n \u00fczerinden 8 aydan fazla ge\u00e7mesine ra\u011fmen ruhsat s\u00fcreci neden sonu\u00e7land\u0131r\u0131lmam\u0131\u015f ve geri \u00f6deme kapsam\u0131na al\u0131narak hastalar\u0131n kullan\u0131m\u0131na sunulmam\u0131\u015ft\u0131r?<\/p>\n

-SMA hastalar\u0131 i\u00e7in Spinraza ilac\u0131 i\u00e7in yap\u0131lan toplam harcama \u00f6l\u00e7\u00fcs\u00fc ne kadard\u0131r? Hangi hasta tipi i\u00e7in ba\u015fka farkl\u0131 ne \u00f6l\u00e7\u00fcde hastane, tedavi ve ila\u00e7 masraf\u0131 yap\u0131lm\u0131\u015ft\u0131r?<\/p>\n

-Zolgensma ilac\u0131n\u0131n devlet taraf\u0131ndan fiyats\u0131z kar\u015f\u0131lanmas\u0131 yahut i\u015ftirak hisseli bir b\u00fct\u00e7e olu\u015fturulmas\u0131 i\u00e7in rastgele bir \u00e7al\u0131\u015fma yap\u0131lmakta m\u0131d\u0131r?<\/p>\n

Kaynak: ANKA \/ S\u0131hhat <\/div>\n","protected":false},"excerpt":{"rendered":"

CHP Adana Milletvekili Burhanettin Bulut, T\u00fcrkiye’de ruhsatl\u0131 tek ila\u00e7 olan ‘Spinraza’ya 3 ayd\u0131r ula\u015famayan SMA hastalar\u0131n\u0131n durumunu Meclis g\u00fcndemine ta\u015f\u0131d\u0131. Bulut, S\u0131hhat Bakan\u0131 Fahrettin Koca’ya sorular y\u00f6neltti ve ilac\u0131n ne vakit ruhsatland\u0131r\u0131laca\u011f\u0131n\u0131 sordu.<\/p>\n","protected":false},"author":1,"featured_media":49600,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[1],"tags":[6974,4731,6226,68,6973],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/posts\/49599"}],"collection":[{"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=49599"}],"version-history":[{"count":1,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/posts\/49599\/revisions"}],"predecessor-version":[{"id":49601,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/posts\/49599\/revisions\/49601"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/media\/49600"}],"wp:attachment":[{"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=49599"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=49599"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=49599"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}