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Sağlık Bakanı Fahrettin Koca sosyal medya hesabından yaptığı paylaşımda SMA'lı hastalarla ilgili açıklama yaptı
"İYİ NİYETLİ HİÇ KİMSENİN ALET OLMAMASI GEREKİR" Koca, "SMA'lı evlatlarımız üzerinden yürütülen kirli kampanyaya iyi niyetli hiç kimsenin alet olmaması gerekir" ifadelerini kullandı.
"TÜM HASTALARIMIZ TEDAVİ EDİLENE KADAR MÜCADELEMİZ DEVAM EDECEKTİR" Koca yaptığı açıklamada, "İlaç şirketlerinin baskısı ile çocuklarımızın kobay olarak kullanılmasına izin vermeyeceğiz. Ülkemizde SMA hastalığı görülmeyene, mevcut tüm hastalarımız tedavi edilene kadar mücadelemiz devam edecektir." şeklinde konuştu.
Koca'nın açıklaması şu şekilde: SMA'lı evlatlarımız üzerinden yürütülen kirli kampanyaya iyi niyetli hiç kimsenin alet olmaması gerekir.
Aziz Vatandaşlarım,
Bildiğiniz üzere ülkemizde çokça gündeme getirilen Spinal Müsküler Atrofi (SMA) hastası çocuklarımız ile ilgili kampanyalar yürütülmektedir.
Her bir hastamızın hastalığı ne olursa olsun sağlığına kavuşmasından sorumluyuz. Hele hastamız bir çocuksa bu tüm öncelikleri en yüksek seviyede hak etmektedir. Her bir evladımızın sıhhati ve canı en kutsal emanetimizdir.
"SUİSTİMAL EDİLMESİ ASLA KABUL EDİLEMEZ" Milletçe en hassas olduğumuz konulardan biri evlatlarımızdır. Hastalıkların tedavisi ise sosyal medyadan sahte kahramanlıklar sergileyerek değil, bilimin gösterdiği yolu takip ederek gerçekleştirilir.SMA hastası çocuklarımız için de devletimiz tüm imkânlarını kullanarak tedavilerini sağlamaktadır. Bu konunun suistimal edilmesi asla kabul edilemez.
Bakanlığımız bünyesinde bu evlatlarımızın tedavisinin planlandığı, alanında uzman ve SMA tedavisinde tecrübeli bilim insanlarımızdan oluşan bilimsel bir kurulumuz vardır. Çocuklarımızın tedavisi konusunda en güncel yöntemler bu kurulumuzca değerlendirilerek en hızlı biçimde uygulamaya geçirilmektedir. Bu konuda mali koşullar gündemimizde dahi değildir.
SMA Bilim Kurulumuz aileleri ve aile derneklerini birinci elden bilgilendirmektedir. Ülkemizde tedavi almayan bir tane bile SMA hastamız bulunmamaktadır. Tedavi masraflarının tamamı devletimiz tarafından ücretsiz olarak karşılanmaktadır.
Son zamanlarda geliştirilen ve gündemde olan gen tedavisine ilişkin veriler, ilk süreçte olduğu gibi derhal ve titizlikle SMA Bilim Kurulumuzca incelemeye alınmıştır. Sadece son 2 ayda bilim kurulumuz 5 kez toplanarak ilaçla ilgili verileri incelemiştir. Bu hafta da bir değerlendirme toplantısı yapacaktır.
Gen tedavisinin etkinliğine dair bilimsel platformlarda yayınlanan kanıtlar henüz yeterli düzeyde değildir ve hâlihazırda uygulanan tedaviye üstünlüğüne dair kanıt bulunmamaktadır. Yapılan bazı çalışmalarda başta karaciğer yetmezliği ve trombosit sayısında düşüklük (kanama eğilimi) olmak üzere ciddi yan etkilerinin bulunduğu bildirilmiştir.
Ayrıca gen tedavisinin uygulama prosedürünün bir parçası olarak en az bir ay süreyle bağışıklık sisteminin baskılanması gerekmekte, özellikle kilosu daha yüksek olan bazı hastalarda bu süreç 1 yıla kadar uzayabilmektedir. Zaten kırılgan yapısı olan SMA hastalarımızda enfeksiyonlar ve bağışıklık sisteminin baskılanması daha büyük risk oluşturmakta, herhangi bir hastalık seyri sırasında süreç, hastalıktan bağımsız olarak ölümcül olabilmektedir.
"İLAÇ ŞİRKETLERİNİN OYUNUNA MÜSAADE ETMEYECEĞİZ" Aziz vatandaşlarım,
SMA hastası çocuklarımız üzerinden yürütülen kirli kampanyaya açıklık getirmek istiyorum. Güncel ve işe yaradığı ispat edilen tüm tedaviler SMA Bilim Kurulumuzun önerisi ile uygulanmaktadır. Çocuklarımızın kobay olarak kullanılmasının ise net olarak karşısındayız. Bilimsel veriler dışında küresel ilaç şirketlerinin oyununa müsaade etmeyeceğiz. Ailelerimizin suiistimal edilmesine izin vermeyeceğiz. Gen tedavisi adı altında ortaya atılan yöntemin bilimsel olarak işe yaradığını gösteren şimdilik somut hiçbir veri bulunmamaktadır. Ancak ilaç şirketlerinin oyununa gelerek yapılan kampanyalarla bu durum suiistimal edilmektedir. İlaç şirketlerinin baskısı ile çocuklarımızın kobay olarak kullanılmasına izin vermeyeceğiz.
Bir konuda toplu olarak tepki vermek kadar güzel bir davranış yoktur. Ancak gördüğümüz kadarıyla ilaç şirketlerinin amacına hizmet eden bir organizasyonla karşı karşıyayız.
"ÜLKEMİZ HER ŞART ALTINDA VATANDAŞININ TEDAVİSİNİ YAPABİLECEK GÜÇTEDİR" Kampanya düzenleyerek zikredilen rakamlar, önerilen finansal kaynaklar bu zamana kadar çocuklarımızın tedavisi için ayrılan kaynağın yanında hiçbir değer ifade etmemektedir. Mesele kaynak meselesi değildir. Ülkemiz her şart altında vatandaşının tedavisini yapabilecek güçtedir. Burada esas konu ahlak sınırlarını aşarak devletimizi aciz göstererek küresel ilaç şirketlerinin savunuculuğunu yapmaktır. Bir araya gelerek kampanya yürüten ve devletimizi aciz göstermeye çalışan bu kampanyaya alet olmayacağız.
Devletimiz işe yaradığı ispat edilen her tedaviyi ücretsiz olarak evlatlarımız için kullanmaya devam edecektir.
SMA hastalığı genetik bir hastalıktır. Bundan sonra tüm evlilik öncesinde aile adaylarına gen taraması da yaparak tedbir alınacak ve ülkemizde SMA hastalığı görülmeyene, mevcut hastalarımız tedavi edilene kadar mücadelemiz devam edecektir.
SOSYAL MEDYADAN ALGI OPERASYONU BAŞLATILMIŞTI SMA hastası çocuklar üzerinden sosyal medya aracılığıyla algı operasyonu başlatılmış muhalif siyasi parti başkanları da siyasi çıkar elde etmek için algı operasyonuna destek çıkmıştı. Milli Piyango'dan Türkiye Varlık Fonu'na aktarılacağı iddia edilen 75 milyon TL'nin SMA hastası çocuklar için kullanılması gerektiğini söyleyerek devletin SMA hastası çocuklara destek olmadığı algısını yapan Kemal Kılıçdaroğlu, Meral Akşener , Ahmet Davutoğlu , Ali Babacan gibi isimler twitterdan paylaşımda bulundu. Bakan Koca yaptığı açıklama ile algı oyunlarını bozdu.
İşte o isimlerden bazılar: