<\/p>\n
\u00a0Sa\u011fl\u0131k Bakan\u0131 Fahrettin Koca, sosyal medya hesab\u0131ndan, Millet \u0130ttifak\u0131’n\u0131n cumhurba\u015fkan\u0131 aday\u0131 ve CHP Genel Ba\u015fkan\u0131 Kemal K\u0131l\u0131\u00e7daro\u011flu’nun, bir Youtube kanal\u0131n\u0131n program\u0131nda, Spinal M\u00fcsk\u00fcler Atrofi (SMA) hastalar\u0131 konusunda yapt\u0131\u011f\u0131 a\u00e7\u0131klamalara ili\u015fkin payla\u015f\u0131mda bulundu.<\/p>\n
“Kemal Bey, biz onu zaten yap\u0131yoruz” ba\u015fl\u0131\u011f\u0131yla yapt\u0131\u011f\u0131 payla\u015f\u0131m\u0131nda Koca, “Say\u0131n Kemal K\u0131l\u0131\u00e7daro\u011flu, konuk oldu\u011fu bir Youtube kanal\u0131n\u0131n program\u0131nda SMA hastalar\u0131 konusuna da de\u011findi. \u015e\u00fcphesiz, SMA konusundaki her hassasiyet takdir edilesidir, ama vaadi, Bakanl\u0131\u011f\u0131m\u0131z\u0131n \u00e7oktan hayata ge\u00e7mi\u015f, yerle\u015fmi\u015f bir uygulamas\u0131n\u0131 hayata ge\u00e7irme vaadiydi.” de\u011ferlendirmesini yapt\u0131.<\/p>\n
Evlilik \u00f6ncesi \u00e7iftlere SMA taramas\u0131 program\u0131n\u0131n 2021’de ba\u015flad\u0131\u011f\u0131n\u0131, tarama programlar\u0131 ba\u015flat\u0131l\u0131rken Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131n\u0131n kapsaml\u0131 haz\u0131rl\u0131klar yapt\u0131\u011f\u0131n\u0131 belirten Bakan Koca, \u015f\u00f6yle devam etti:<\/p>\n
“Say\u0131n K\u0131l\u0131\u00e7daro\u011flu’nun, SMA konusundaki bu geli\u015fmeleri izlemedi\u011fi veya bile bile b\u00f6yle beyanlarda bulundu\u011fu d\u00fc\u015f\u00fcnebilir. Yoksa halihaz\u0131rdaki uygulamay\u0131 ni\u00e7in vaat etsin? B\u00fct\u00e7e g\u00f6r\u00fc\u015fmeleri s\u0131ras\u0131nda, 24 Kas\u0131m 2022 tarihinde yapt\u0131\u011f\u0131m konu\u015fmada, gelinen noktay\u0131 g\u00f6steren g\u00fcncel bilgileri TBMM’de sunmu\u015f, t\u00fcm sunumu i\u00e7eren bas\u0131l\u0131 dok\u00fcman\u0131 da Meclis’te bulunan vekillerimizle payla\u015fm\u0131\u015ft\u0131m. Bu dok\u00fcman\u0131n 220 ila 223 aras\u0131ndaki sayfalar\u0131 \u015fimdi tekrar \u00fcst\u00fcnde durulan konulara ayr\u0131lm\u0131\u015ft\u0131. Partisinin milletvekilleri oradayd\u0131. Konudan habersiz olmas\u0131 hi\u00e7 m\u00fcmk\u00fcn m\u00fc?”<\/p>\n
Sa\u011fl\u0131k Bakan\u0131 Koca, 2021 y\u0131l sonundan itibaren 600 bin \u00e7iftin evlilik \u00f6ncesi SMA taramas\u0131n\u0131n, may\u0131s 2022’den bu yana yakla\u015f\u0131k 1,5 milyon yeni do\u011fan bebe\u011fin SMA taramas\u0131n\u0131n tamamland\u0131\u011f\u0131n\u0131 bildirdi.<\/p>\n
SMA tedavisinde kullan\u0131lan ilac\u0131n, tedavi rehberinde ve geri \u00f6deme kapsam\u0131nda oldu\u011funu aktaran Bakan Koca, \u015funlar\u0131 kaydetti:<\/p>\n
“SMA hastas\u0131 hi\u00e7bir evlad\u0131m\u0131z tedavisiz b\u0131rak\u0131lmamaktad\u0131r. Taramalar neticesinde hastal\u0131\u011f\u0131na erken d\u00f6nemde tan\u0131 konan asemptomatik, yani belirtisiz hastalar i\u00e7in uluslararas\u0131 kabul g\u00f6rm\u00fc\u015f t\u0131bbi kriterlere g\u00f6re Gen Terapisi tedavi y\u00f6nteminin uygulanabilece\u011fi SMA Bilim Kurulumuzca de\u011ferlendirilmi\u015f ve uygulaman\u0131n geri \u00f6demeye al\u0131nmas\u0131 i\u00e7in Bakanl\u0131\u011f\u0131m\u0131z\u0131n ‘uygun’ g\u00f6r\u00fc\u015f\u00fc Sosyal G\u00fcvenlik Kurumuna iletilmi\u015ftir. \u00c7ok yak\u0131nda geri \u00f6demeye al\u0131nmas\u0131 planlanmaktad\u0131r. Semptomatik yani belirtisi olan hastalar i\u00e7inse Gen Terapisinin etkili olmad\u0131\u011f\u0131 uluslararas\u0131 bilim camias\u0131nca kabul g\u00f6rm\u00fc\u015f bir ger\u00e7ektir.<\/p>\n
\u00d6zetin \u00f6zeti a\u00e7\u0131klamadan da anla\u015f\u0131laca\u011f\u0131 gibi, SMA hastas\u0131 \u00e7ocuklar\u0131m\u0131z i\u00e7in tedavi y\u00f6ntemi se\u00e7iminde ekonomik \u015fartlar kesinlikle de\u011ferlendirme kriteri de\u011fildir. \u015euna herkes inanmal\u0131, devletimiz sonu\u00e7 verdi\u011fi kan\u0131tl\u0131 bir tedaviyi SMA hastas\u0131 evlatlar\u0131ndan esirgemez.”<\/p>\n
Koca, Cumhurba\u015fkan\u0131 Recep Tayyip Erdo\u011fan’\u0131n, sa\u011fl\u0131k hizmetlerine verdi\u011fi \u00f6nemin, sa\u011fl\u0131\u011fa ayr\u0131lan kayna\u011f\u0131n b\u00fcy\u00fckl\u00fc\u011f\u00fc ve ku\u015fat\u0131c\u0131l\u0131\u011f\u0131n\u0131n ortada oldu\u011funu belirtti.<\/p>\n
Bilim ne s\u00f6yl\u00fcyorsa ona bak\u0131lmas\u0131 gerekti\u011fine i\u015faret eden Koca, “Yak\u0131nlar\u0131 \u0131st\u0131rapl\u0131 SMA hastalar\u0131n\u0131n durumuna yanl\u0131\u015f bilgilerle yakla\u015fan, do\u011fruyu \u00f6\u011frendi\u011fi halde s\u00f6ylemini s\u00fcrd\u00fcr\u00fcrse yapt\u0131\u011f\u0131 istismara d\u00f6ner. Etkinli\u011fi kan\u0131tlanm\u0131\u015f her tedaviyi o tedaviye uygun her SMA hastam\u0131za uygulamaya haz\u0131r\u0131z. Devletimiz buna muktedirdir.” ifadelerini kulland\u0131.<\/p>\n