Son dakika haberi...
Bakan Koca'nın SMA manipülasyonuna karşı sosyal medya hesabından duyurduğu açıklaması şöyle;
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Son dakika haberi...
Bakan Koca'nın SMA manipülasyonuna karşı sosyal medya hesabından duyurduğu açıklaması şöyle;
"SMA Hastası çocuklarımızın durumu ile ilgili SMA Bilim Kurulumuz önemli bir toplantı yaptı. Bilimin gösterdiği her yolu çocuklarımızın tedavisi için değerlendireceğimizden emin olunuz. Uygun hastada uygun tedavi kesinlikle devreye alınacaktır."
Bakan Koca'nın yaptığı açıklama şu şekilde:
"Bilmenizi isterim ki, SMA hastası çocuklarımızın tedavisi ile ilgili her türlü tedbiri alıyoruz. Onlar için en iyisini yapmak üzere tüm güncel gelişmeleri takip ediyoruz. SMA Bilim Kurulumuz hangi hasta için hangi tedavinin uygun olacağına karar veriyor. Biz de bu tedavi bilimsel olarak değerlendirilebilir olduğunda uygulanmasını sağlıyoruz.
SMA Bilim Kurulumuz çevrim içi toplanarak gündemdeki konuları ele almıştır. Bilim Kurulumuz SMA hastalığının tedavisinde en tecrübeli bilim insanlarımızdan oluşmaktadır.
KANIT YOK
Yaptıkları değerlendirmede;
1. Gen tedavisi konusunda son gelişmeler incelenmiş; 25/11/2020 tarihli çalıştaydan sonra bilimsel yayında tedavinin etkinliğine ve güvenilirliğine yönelik ek kanıt bulunmadığı,
2. SMA hakkındaki gelişmelerin ve yapılan bilimsel danışma kurulu toplantı kararlarının basın ile paylaşılarak doğru bilginin hem yazılı hem de görsel medyada ulaşılabilirliğinin arttırılması gerektiği,
KAMPANYALAR ALDATICI
3. Etkinlik ve güvenilirlik açısından henüz yeterli kanıt bulunmayan gen tedavisi uygulanması için ülkemizde kampanyalar düzenlenmesinin uygun bulunmadığı,
HER İKİ İLAÇ İÇİN GÜVENLİK BİLGİSİ BULUNMUYOR
4. Bir şekilde yurtdışında Zolgensma tedavisi alan vatandaşlarımızın ülkemize dönüşleri sonrası Nusinersen tedavisini sürdürme gayreti içinde olduğuna dair bilgiler olduğu, bilimsel literatürde her iki ilacın birlikte kullanımına dair güvenlik bilgisinin bulunmadığı, bu nedenle ciddi yan etkiler görülebileceği, bu konuda gerekli tedbirlerin alınması gerektiği,
5. SMA'lı çocukların tedavi sonrası bilişsel ve fiziksel gelişimlerinin izlenerek bu bireylerin toplumsal hayata katılım konusundaki nesnel katkısının belirlenmesine dair çalışmalar yapılması gerekliliği,
6. Toplantıda ayrıca kurula bilgi vermek üzere Sağlık Bakanlığına SMA tarama çalışmaları konusunda danışmanlık yapan tıbbi genetik uzmanları konuk edilmiş, Bilim Kurulu'na mevcut çalışmaların son durumu aktarılarak görüşleri alınmıştır. Özellikle COVID dönemi ile birlikte ülkemizde PCR cihaz alt yapısının oldukça geliştirildiği vurgulanmış, bu bağlamda hem evlilik öncesi taşıyıcı taraması hem de yenidoğan tarama kitlerinin geliştirilmesine yönelik çalışmaların TUSEB tarafından organize edildiği bilgisi aktarılmıştır. En kısa sürede başta pilot uygulamalar olmak üzere toplum genelinde tarama işlemlerinin uygulanmasının hayati öneme sahip olduğu,
7. Nusinersen tedavi uygulama merkezlerinin sayısının artırılmasının gerekliliğine; tedavinin standardize edilmesi için uygulama yapacak merkezlerle ilgili kriterler belirlenmesinin yanı sıra FTR, çocuk/erişkin nöroloji uzmanları ve ilgili branşlara değerlendirme ve uygulama standardizasyonu için eğitimler düzenlenmesi gerektiği bildirilmiştir.
"ONLAR İÇİN EN İYİSİNİ YAPMAK ÜZERE..."
Aziz Vatandaşlarım,
Bilmenizi isterim ki, SMA hastası çocuklarımızın tedavisi ile ilgili her türlü tedbiri alıyoruz. Onlar için en iyisini yapmak üzere tüm güncel gelişmeleri takip ediyoruz. SMA Bilim Kurulumuz hangi hasta için hangi tedavinin uygun olacağına karar veriyor. Biz de bu tedavi bilimsel olarak değerlendirilebilir olduğunda uygulanmasını sağlıyoruz. Bundan sonra da hangi tedavi olursa olsun bir çocuğumuzun hayatını iyileştirecekse o tedaviyi de uygulayacağımızdan emin olunuz.
Bizlerin tek gayesi tüm bireyleri sağlıklı bir Türkiye için çalışmaktır"