{"id":3352,"date":"2023-01-08T21:23:43","date_gmt":"2023-01-08T18:23:43","guid":{"rendered":"https:\/\/umutagaci.com\/?p=3352"},"modified":"2023-01-08T21:30:34","modified_gmt":"2023-01-08T18:30:34","slug":"sma-nedir-tedavisi-neden-bu-kadar-pahali-turkiyedeki-tartismalar-neler","status":"publish","type":"post","link":"https:\/\/umutagaci.com\/2023\/01\/08\/sma-nedir-tedavisi-neden-bu-kadar-pahali-turkiyedeki-tartismalar-neler\/","title":{"rendered":"SMA nedir, tedavisi neden bu kadar pahal\u0131, T\u00fcrkiye\u2019deki tart\u0131\u015fmalar neler?"},"content":{"rendered":"

Rabia \u00c7etin \/tr.euronews.com<\/span><\/p>\n

T\u00fcrkiye\u2019de son zamanlarda \u00f6zellikle sosyal medyada en aktif y\u00fcr\u00fct\u00fclen kampanyalardan biri SMA kampanyas\u0131. Aileler sosyal medyadan a\u00e7t\u0131klar\u0131 hesaplar \u00fczerinden ba\u011f\u0131\u015f yoluyla kampanya y\u00fcr\u00fcterek SMA hastas\u0131 bebeklerini ABD, Avrupa\u2019ya tedaviye g\u00f6ndermeye \u00e7al\u0131\u015f\u0131yor. SMA kampanyalar\u0131nda en s\u0131k duyulan ilac\u0131n ismi isen Zolngensma. Tek seferlik verilen bu ilac\u0131n maliyeti 2 ila 3 milyon dolar aras\u0131nda.\u00a0<\/span><\/p>\n

Peki SMA nedir, neden tedavisi bu kadar pahal\u0131, T\u00fcrkiye\u2019de bu konudaki tart\u0131\u015fmalar ve Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131\u2019n\u0131n \u00e7al\u0131\u015fmalar\u0131 neler?<\/span><\/h2>\n

SMA nedir?<\/span><\/h2>\n

Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131\u2019nca 2021 y\u0131l\u0131nda evlilik \u00f6ncesindeki \u00e7iftlere \u00fccretsiz Spinal M\u00fcsk\u00fcler Atrofi (SMA) taramas\u0131 \u00e7al\u0131\u015fmas\u0131 ba\u015flat\u0131lan pilot illerden biri \u015eanl\u0131urfa. \u015eanl\u0131urfa E\u011fitim ve Ara\u015ft\u0131rma Hastanesi\u2019nden Doktor Mehmet Akif Tuncel, SMA hastal\u0131\u011f\u0131n\u0131 \u015f\u00f6yle tan\u0131ml\u0131yor:<\/span><\/p>\n

\u201cSMA genetik bir hastal\u0131k. Akraba evliliklerinin fazla oldu\u011fu Ortado\u011fu\u2019da daha s\u0131k g\u00f6r\u00fclen SMA, 3 tipi olan sinir motor n\u00f6ron hastal\u0131\u011f\u0131d\u0131r. Kaslar\u0131n kas\u0131lmas\u0131n\u0131 etkileyen, duyusal hi\u00e7bir hasar\u0131 olmayan, zihnin normal oldu\u011fu bir hastal\u0131k t\u00fcr\u00fc. \u00c7ocuklarda g\u00f6r\u00fclen bir kal\u0131tsal hastal\u0131k. Genelde anne ve babadan gelen \u00e7ekinik genle ta\u015f\u0131n\u0131r. Anne ya da baba ta\u015f\u0131y\u0131c\u0131d\u0131r. En s\u0131k g\u00f6r\u00fclen tipi SMA T\u0130P 1\u2019dir. SMA T\u0130P 1\u2019de tedavi olamayan \u00e7ocuklar\u0131n 2 ya\u015f\u0131ndan fazla ya\u015famas\u0131 nadir g\u00f6r\u00fcl\u00fcr. SMA T\u0130P 2 z 2-3 ya\u015flar\u0131nda ortaya \u00e7\u0131kar, daha hafif seyirlidir. SMA T\u0130P 3 ise 7 ya\u015f\u0131ndan ergenlik d\u00f6nemine kadar semptom vermeye ba\u015flar. Bir de yeti\u015fkin tip var. Bunlar\u0131n hepsi genelde nadir g\u00f6r\u00fcl\u00fcr. En s\u0131k g\u00f6r\u00fclen ve \u00f6l\u00fcmc\u00fcl olan SMA T\u0130P 1\u2019dir. SMA T\u0130P 1, kaslarda zay\u0131flamayla ba\u015fl\u0131yor, kaslardaki zay\u0131flama ilerliyor. Solunum kaslar\u0131na ula\u015ft\u0131\u011f\u0131nda da \u00e7ocuklar solunum cihaz\u0131na ba\u011fl\u0131 hale geliyor ve zat\u00fcrre ya da enfeksiyondan hayat\u0131n\u0131 kaybediyor.\u201d<\/span><\/p>\n

Zolgensma nas\u0131l bir ila\u00e7, T\u00fcrkiye’de var m\u0131?<\/strong><\/span><\/h2>\n

SMA tedavisinde en s\u0131k duyulan ila\u00e7 ismi Zolgensma. Tarihte \u00fcretilmi\u015f en pahal\u0131 ila\u00e7 olarak bilinen Zolgensma\u2019n\u0131n fiyat\u0131 2 ila 3 milyon dolar aras\u0131nda.\u00a0<\/span><\/p>\n

Zolgensma ile SMN1 geninin \u00e7al\u0131\u015fan bir versiyonuyla de\u011fi\u015ftirilmesi hedefleniyor. Damar i\u00e7i enjeksiyon yoluyla tek seferde uygulanan Zolgensma, ABD’de 2 ya\u015f\u0131ndan k\u00fc\u00e7\u00fck ve Avrupa’da ise 21 kilodan hafif \u00e7ocuklarda kullan\u0131labilen ila\u00e7 tek doz halinde uygulan\u0131yor.\u00a0<\/span><\/p>\n

Ancak T\u00fcrkiye\u2019de hen\u00fcz kullan\u0131mda de\u011fil. SMA hastas\u0131 bebeklerin aileleri Zolgensma tedavisinin T\u00fcrkiye\u2019de uygulanmas\u0131n\u0131 istiyor.\u00a0<\/span><\/p>\n

Sa\u011fl\u0131k Bakan\u0131 Fahrettin Koca ise ge\u00e7ti\u011fimiz kas\u0131m ay\u0131nda konuya ili\u015fkin yapt\u0131\u011f\u0131 a\u00e7\u0131klamada T\u00fcrkiye\u2019de uygulanmamas\u0131n\u0131n sebebinin ekonomik olmad\u0131\u011f\u0131n\u0131 ifade etti.\u00a0<\/span><\/p>\n

T\u00fcrkiye\u2019de SMA konucunda ikinci bir ilac\u0131n kullan\u0131m\u0131n\u0131n Bilim Kurulu taraf\u0131ndan \u00f6nerildi\u011fini belirterek \u015funlar\u0131 s\u00f6yledi:<\/span><\/p>\n

\u201cBilim Kurulumuz, oral kullan\u0131m\u0131 olan etkisini g\u00f6stermi\u015f ikinci bir ilac\u0131n kullan\u0131m\u0131n\u0131 \u00f6nerdi. Bu ilac\u0131n kullan\u0131ma al\u0131nmas\u0131 i\u00e7in i\u015flemleri ba\u015flatt\u0131k\u00a0SMA konusu kesinlikle bir \u00f6deme sorunu de\u011fildir. Binden fazla SMA hastam\u0131z var ve tedavilerini etkinli\u011fini ispat etmi\u015f ila\u00e7la masraflar\u0131n\u0131n tamam\u0131n\u0131 devletimiz kar\u015f\u0131layacak \u015fekilde kullan\u0131yoruz. Bunun mali bir konu olmad\u0131\u011f\u0131 \u015fu \u00f6rnekle izah edilebilir. T\u00fcrkiye’de toplam 250 hastas\u0131 i\u00e7in ba\u015fka iki nadir hastal\u0131kta kullan\u0131lan, sadece iki enzim t\u00fcr\u00fc i\u00e7in y\u0131ll\u0131k SMA hastalar\u0131 i\u00e7in \u00f6denen toplam miktar\u0131n iki kat\u0131 \u00f6deme yap\u0131yoruz. 60 milyon euro SMA i\u00e7in, 120 milyon euro iki enzim i\u00e7in \u00f6d\u00fcyoruz 250 hasta i\u00e7in. Sorun nerede? Zolgensma isimli gen tedavisinin \u00f6deme kapsam\u0131nda olmamas\u0131. Bahse konu tedavinin etkinli\u011fini SMA Bilim Kurulumuz de\u011ferlendiriyor. Bu bilim kurulu fak\u00fcltelerimiz ve sahada \u00f6zellikle hastalar\u0131 tedavi eden hocalar\u0131m\u0131zdan olu\u015fan bir bilim kurulu. Bakanl\u0131k karar vermiyor. SMA Bilim Kurulumuz, SMA hastas\u0131 \u00e7ocuklar\u0131m\u0131z\u0131n tedavisini \u00fcstlenen bilim insanlar\u0131ndan olu\u015fuyor. SMA Bilim Kurulu, tedavinin etkinli\u011fi ile ilgili yeterli kan\u0131t olmad\u0131\u011f\u0131 gerek\u00e7esiyle \u015fimdilik uygulamaya al\u0131nmas\u0131n\u0131n bir gereklilik olmad\u0131\u011f\u0131n\u0131 ifade etti. Kald\u0131 ki \u00fcretici, belirtisi olmayan hastalara bu tedavilerin uygulanmas\u0131n\u0131 zaten \u00f6nermiyor. \u00dcreticinin kendisi belirtisi olmayan hastalara \u00f6nermiyor.\u201d\u00a0<\/span><\/p>\n

euronews, Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131\u2019na bu konudaki \u00e7al\u0131\u015fmalara dair soru sordu ancak Bakanl\u0131k yetkilileri Koca\u2019n\u0131n a\u00e7\u0131klamalar\u0131n\u0131n yeterli oldu\u011funu ve daha fazla a\u00e7\u0131klama yapamayacaklar\u0131n\u0131 belirtti.<\/span><\/p>\n

\u201cBakanl\u0131k ilaca \u015f\u00fcpheyle yakla\u015f\u0131m\u0131nda hakl\u0131\u201d<\/span><\/h3>\n

\u00d6te yandan Doktor Mehmet Akif Tuncel de Bakanl\u0131\u011f\u0131n ilaca \u015f\u00fcpheyle yakla\u015f\u0131m\u0131n\u0131n hakl\u0131 oldu\u011funu \u00e7\u00fcnk\u00fc bu konuda bilimsel verilerin hen\u00fcz tam olarak ortaya konmad\u0131\u011f\u0131n\u0131 vurgulad\u0131.\u00a0<\/span><\/p>\n

SMA\u2019da iki tip tedavinin uyguland\u0131\u011f\u0131n\u0131 vurgulayan Tuncel, \u201c\u0130ki tip gen tedavisi var. Birincisi do\u011frudan k\u00f6k h\u00fccre tedavisi yani eksik olan geni yerine koyma tedavisi. \u0130kincisi ise o genin proteinini yerine koyma \u015feklinde. T\u00fcrkiye\u2019de uygulanan asl\u0131nda proteinini yerine koyma tedavisi. Baz\u0131 \u00e7al\u0131\u015fmalar ikisinin aras\u0131nda \u00e7ok fazla fark olmad\u0131\u011f\u0131n\u0131 g\u00f6sterse de ABD\u2019ye giden hastalardan al\u0131nan sonu\u00e7lar biraz daha olumlu. Ama tabi bakanl\u0131\u011f\u0131n da belirtti\u011fi gibi ABD\u2019deki tedavilere ili\u015fkin hen\u00fcz tam bir bilimsel sonu\u00e7 yok. K\u0131sa vadede verdi\u011fi sonu\u00e7 y\u00fcz g\u00fcld\u00fcr\u00fcc\u00fc olsa da uzun vadede ger\u00e7ek anlamda bir iyile\u015fme sa\u011flay\u0131p sa\u011flamad\u0131\u011f\u0131n\u0131 \u00f6n\u00fcm\u00fczdeki d\u00f6nemlerde g\u00f6rece\u011fiz\u201d diyor.<\/span><\/p>\n

\u201cT\u00fcrkiye\u2019de uygulanan tedaviyle Ya\u011f\u0131z bebe\u011fin hastal\u0131\u011f\u0131n\u0131n ilerleyi\u015fini ciddi anlamda durdurduk\u201d<\/span><\/h3>\n

T\u00fcrkiye\u2019de uygulanan gen taramas\u0131 sayesinde \u015eanl\u0131urfa\u2019da 40 g\u00fcnl\u00fck Mustafa Ya\u011f\u0131z Avc\u0131\u2019ya SMA Tip 1 te\u015fhisi koyan Mehmet Akif Tuncer, bebe\u011fin T\u00fcrkiye\u2019de uygulanan tedavi sayesinde hastal\u0131\u011f\u0131n\u0131n ilerledi\u011fini duyurdu:<\/span><\/p>\n

\u201cYa\u011f\u0131z bebe\u011fe te\u015fhisi koydu\u011fumuzda hen\u00fcz 50 g\u00fcnl\u00fck bile olmam\u0131\u015ft\u0131. \u00dclkemizde uygulanan tedaviyi uygulad\u0131k ve bebe\u011fin hastal\u0131\u011f\u0131n ilerlemesi ciddi anlamda durdu. Kampanyas\u0131 da bitince yurt d\u0131\u015f\u0131na tedaviye gidebildi. Yani \u00fclkemizde uygulanan tedavi en az\u0131ndan hastal\u0131\u011f\u0131n ilerlemesini durduruyor. Ama tabi bu tedavi i\u00e7in de kar\u015f\u0131la\u015ft\u0131rmal\u0131 yay\u0131nlar\u0131n, bilimsel incelemelerin ve ara\u015ft\u0131rmalar\u0131n yap\u0131lmas\u0131 gerekiyor.\u201d<\/span><\/p>\n

\u201cSMA hastas\u0131 bebek say\u0131s\u0131 de\u011fil SMA fark\u0131ndal\u0131\u011f\u0131 artt\u0131\u201d<\/span><\/strong><\/h3>\n

\u00d6te yandan T\u00fcrkiye\u2019de son zamanlarda SMA hastas\u0131 bebek say\u0131s\u0131n\u0131n artmas\u0131na ili\u015fkin ise Tuncel \u015fu yan\u0131t\u0131 veriyor: \u201cBen Urfa\u2019da g\u00f6rev yap\u0131yorum. Buraya bakarak \u015funu s\u00f6yleyebilirim. SMA hastas\u0131 bebekler her zaman vard\u0131. \u015eu anda bu kadar \u00e7ok g\u00f6r\u00fclmesinin sebebi bu konuya dair fark\u0131ndal\u0131\u011f\u0131n artm\u0131\u015f olmas\u0131, kampanyalar\u0131n artmas\u0131yla ilgili bir durum. Yoksa hastal\u0131\u011f\u0131n s\u0131kl\u0131\u011f\u0131yla ilgili bir art\u0131\u015f yok asl\u0131nda\u201d<\/span><\/p>\n

Son olarak SMA\u2019ya ili\u015fkin sosyal medyada y\u00fcr\u00fct\u00fclen \u201cSMA gen taramas\u0131 kanunla\u015ft\u0131r\u0131ls\u0131n\u201d kampanyas\u0131na ili\u015fkin de konu\u015fan Tuncel, T\u00fcrkiye\u2019de evlilik \u00f6ncesinde ve hamilelik s\u0131ras\u0131nda gen taramas\u0131n\u0131n yap\u0131ld\u0131\u011f\u0131n\u0131 s\u00f6yledi.<\/span><\/p>\n

Aileler SMA konusunda neden kampanya y\u00fcr\u00fct\u00fcyor?<\/span><\/strong><\/h2>\n

T\u00fcrkiye\u2019de uygulanan tedaviyle hastal\u0131\u011f\u0131n ilerleyi\u015fi yava\u015flasa da aileler \u00e7o\u011funlukla \u00e7ocuklar\u0131n\u0131n yurt d\u0131\u015f\u0131nda Zolgensma tedavisi uygulayabilmek i\u00e7in sosyal medyada, sahada aktif kampanya y\u00fcr\u00fct\u00fcyor.\u00a0<\/span><\/p>\n

Kampanyas\u0131 biten bebekler yurt d\u0131\u015f\u0131na tedaviye giderken, kampanya s\u0131ras\u0131nda hayat\u0131n\u0131 kaybeden bebeklerin hesab\u0131nda toplanan para ise valilik izniyle ba\u015fka bir bebe\u011fin kampanyas\u0131na aktar\u0131l\u0131yor.<\/span><\/p>\n

Kampanyas\u0131 biten bebeklerden biri de Murat Ko\u00e7. A\u011fustos 2020\u2019de SMA T\u0130P 1 te\u015fhisi konan bebek i\u00e7in ailesi I\u011fd\u0131r Valili\u011fi\u2019nden ald\u0131\u011f\u0131 izinle kampanya ba\u015flatt\u0131.\u00a0<\/span><\/p>\n

Kampanya ailenin, g\u00f6n\u00fcll\u00fclerin yan\u0131 s\u0131ra bebe\u011fin day\u0131s\u0131n\u0131n avukat olmas\u0131 nedeniyle barolar\u0131n da dahil olmas\u0131yla \u015eubat 2022\u2019de tamamland\u0131. Duabi\u2019de tedavi olan Murat Ko\u00e7 \u015fimdi y\u00fcr\u00fcyebiliyor. Bebe\u011fin day\u0131s\u0131 \u0130stanbul Barosu\u2019ndan avukat Murat Arksak kampanya s\u00fcrecini ve ya\u015fad\u0131klar\u0131n\u0131 \u015f\u00f6yle anlat\u0131yor:<\/span><\/p>\n

\u201cMurat\u2019a A\u011fustos 2020\u2019de te\u015fhis kondu. I\u011fd\u0131r\u2019da ya\u015fad\u0131klar\u0131 i\u00e7in I\u011fd\u0131r Valili\u011fi\u2019ne ba\u015fvurarak kampanya ba\u015flatmak zorunda kald\u0131k \u00e7\u00fcnk\u00fc Zolgensma pahal\u0131 bir ila\u00e7 ve T\u00fcrkiye\u2019de uygulanm\u0131yor. Kampanyam\u0131z boyunca T\u00fcrkiye\u2019de neden tedavi olunamad\u0131\u011f\u0131n\u0131, ilac\u0131n neden bu kadar pahal\u0131 oldu\u011fu konusunu anlat\u0131rken \u00e7ok zorlan\u0131yorduk. \u00d6zellikle Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131\u2019n\u0131n ge\u00e7ti\u011fimiz y\u0131l kampanya y\u00fcr\u00fcten aileleri manip\u00fclatif olmakla su\u00e7lamas\u0131 nedeniyle \u00e7ok zorland\u0131k. Ama \u00e7ok \u015f\u00fck\u00fcr kampanyay\u0131 bitirdik, Murat Zolgensma ilac\u0131n\u0131 ald\u0131. \u015eimdi y\u00fcr\u00fcyor, yemek yiyebiliyor, ko\u015fabiliyor. Ama tabi Zolgensma\u2019n\u0131n yan\u0131 s\u0131ra T\u00fcrkiye\u2019de yo\u011fun bir fizik tedavi uygulamas\u0131 da g\u00f6r\u00fcyor. Yani ilac\u0131 ald\u0131ktan sonra s\u00fcre\u00e7 tam anlam\u0131yla bitmi\u015f de\u011fil. 1 y\u0131l sonra fizik tedavi de tamamlan\u0131nca s\u00fcreci tam olarak atlatm\u0131\u015f olaca\u011f\u0131z. Fizik tedaviyi haftada iki g\u00fcn devlet kar\u015f\u0131l\u0131yor, geri kalan\u0131n\u0131 ise aile olarak kendi imkanlar\u0131m\u0131zla kar\u015f\u0131l\u0131yoruz.\u201d<\/span><\/p>\n

SMA kampanyalar\u0131n\u0131n hukuki boyutlar\u0131 nedir?<\/span><\/strong><\/h2>\n

Kampanyalar\u0131n bir de hukuki boyutlar\u0131 var. Kampanyan\u0131n hukuki boyutlar\u0131na ili\u015fkin de Avukat Murat Arksak \u015fu a\u00e7\u0131klamada bulunuyor:\u00a0<\/span><\/p>\n

\u201c\u00d6nce valili\u011fe ba\u015fvurmak zorundas\u0131n\u0131z. \u00c7o\u011funlukla valilikler ba\u015fta bu t\u00fcr kampanyalara izin vermiyor. Bu durumda da y\u00fcr\u00fctmenin durdurulmas\u0131 i\u00e7in \u0130dare Mahkemesi\u2019ne ba\u015fvuruyorsunuz. \u0130dare Mahkemesi y\u00fcr\u00fctmenin durdurulmas\u0131na karar verince valilik de kampanyaya onay veriyor. Ba\u011f\u0131\u015f hesaplar\u0131n\u0131n yan\u0131 s\u0131ra sahada g\u00f6n\u00fcll\u00fclerin stant a\u00e7\u0131p yard\u0131m toplamas\u0131 i\u00e7in de kaymakaml\u0131k ve valiliklerden izin almak gerekiyor.\u201d<\/span><\/p>\n

T\u00fcrkiye\u2019de en ge\u00e7 te\u015fhis konan bebek \u0130dil Ay\u015fe Adakan<\/span><\/strong><\/h2>\n

Tekirda\u011f\u2019da ya\u015fayan 2 ya\u015f\u0131ndaki \u0130dil Ay\u015fe Adakan da SMA T\u0130P 1 te\u015fhisi konan bebeklerden. Adakan\u2019\u0131n kampanyas\u0131 4 ayda tamamland\u0131 ve Zolgensma ilac\u0131n\u0131 ABD\u2019de Boston\u2019da ald\u0131. \u0130dil Ay\u015fe Adakan en ge\u00e7 te\u015fhis konulan bebeklerden. Adakan ailesi Euronews\u2019e s\u00fcreci \u015f\u00f6yle anlatt\u0131:<\/span><\/p>\n

\u201c\u0130dil T\u00fcrkiye\u2019de en ge\u00e7 te\u015fhis konan bebek. 33 farkl\u0131 hastal\u0131k taramas\u0131 yap\u0131ld\u0131 ve en sonunda SMA te\u015fhisi kondu. Te\u015fhis kondu\u011funda 1 ya\u015f\u0131ndayd\u0131. Kampanya 4 ayda bitti ve ilac\u0131 ald\u0131. \u0130la\u00e7tan \u00f6nce ba\u015f\u0131n\u0131 dik tutam\u0131yordu, desteksiz oturam\u0131yordu, su i\u00e7erken bile t\u0131kan\u0131yordu. Ama ilac\u0131n en h\u0131zl\u0131 sonu\u00e7 verdi\u011fi bebeklerden biri de \u0130dil. \u0130la\u00e7tan 2 hafta sonra nefes t\u0131kan\u0131klar\u0131 ortadan kalkt\u0131, 2 ay sonra da destekle ayakta durmaya ba\u015flad\u0131. \u015eimdi parklarda kendi ba\u015f\u0131na oynayabilecek durumda.\u201d<\/span><\/p>\n

En erken te\u015fhis konulan bebek Kumsal Kar: 20 g\u00fcnl\u00fck iken topuk kan\u0131yla SMA te\u015fhisi kondu<\/span><\/h2>\n

Mersin\u2019in Anamur il\u00e7esine ba\u011fl\u0131 Bozyaz\u0131 beldesinde ya\u015fayan Kumsal Kar ise 7 ayl\u0131k ve kampanyas\u0131 devam eden bebeklerden biri.\u00a0<\/span><\/p>\n

T\u00fcrkiye\u2019de en erken te\u015fhis konan bebek Kumsal. 20 g\u00fcnl\u00fckken topuk kan\u0131ndan yap\u0131lan tarama ile SMA te\u015fhisi konmu\u015f. Kar ailesi de euronews\u2019e yapt\u0131\u011f\u0131 a\u00e7\u0131klamada s\u00fcreci \u015f\u00f6yle anlatt\u0131:\u00a0<\/span><\/p>\n

\u201cT\u00fcrkiye\u2019de uygulanan Spinraza ilac\u0131 i\u00e7in ba\u015fvuru yapt\u0131k. Ama as\u0131l iste\u011fimiz Zolgensma tedavisi olabilmesi. Bunun i\u00e7in de kampanya yapmak zorunday\u0131z. \u0130la\u00e7 dolarla sat\u0131ld\u0131\u011f\u0131 i\u00e7in Dolar\/Euro kurundaki hareketlilik kampanyam\u0131z\u0131n yava\u015f ilerlemesine sebep oluyor. \u015eu anda kampanyam\u0131z y\u00fczde 22\u2019de. Amac\u0131m\u0131z 2 ya\u015f\u0131ndan \u00f6nce bu ilac\u0131 alabilmesi.\u201d<\/span><\/p>\n

29 kampanya bitiren platform: Elimsende<\/span><\/h2>\n

SMA tip hastas\u0131 bebeklerin aileleri kampanyay\u0131 kendi imkanlar\u0131yla s\u00fcrd\u00fcrerek y\u00fczde 80\u2019e ula\u015ft\u0131\u011f\u0131nda bu kez devreye Elimsende ekibi giriyor.\u00a0<\/span><\/p>\n

Elimsende ekibi g\u00f6n\u00fcll\u00fclerin bir araya gelerek kurdu\u011fu bir platform. \u015eu ana kadar 29 bebe\u011fin kampanyas\u0131na kat\u0131larak kampanyan\u0131n tamamlanmas\u0131n\u0131 sa\u011flad\u0131.\u00a0<\/span><\/p>\n

Platformun Ba\u015fkan\u0131 Ahmet Eker, \u015fu ana kadar 29 kampanyaya kat\u0131ld\u0131klar\u0131n\u0131 s\u00f6yledi:<\/span><\/p>\n

\u201c21 Haziran 2021\u2019de kurulduk. \u00c7al\u0131\u015fma arkada\u015f\u0131m\u0131z\u0131n o\u011flunun SMA te\u015fhisiyle beraber kampanyalara ba\u015flad\u0131k. T\u00fcrkiye\u2019nin en h\u0131zl\u0131 biten kampanyas\u0131ndan sonra (37 g\u00fcn) 1 kampanyaya daha bireysel destek olduk. Ama b\u00f6yle olmayaca\u011f\u0131n\u0131 g\u00f6r\u00fcnce, \u00e7ok ki\u015finin az paras\u0131na y\u00f6neldik. Ben bankac\u0131y\u0131m. Elimsende’yi kurarken ilk ekibim bankac\u0131lar, avukatlar ve doktorlardan olu\u015fan yak\u0131n \u00e7evremdi. Sonradan insanlar\u0131n g\u00f6n\u00fcll\u00fcl\u00fck durumuna g\u00f6re y\u00f6netim ekibi de\u011fi\u015fti diyebilirim. Platformu sahiplenen, zaman ay\u0131rabilecek, kampanyalar konusunda tecr\u00fcbeli ve tabii ki mant\u0131kl\u0131 insanlarla her zaman ayn\u0131 ekipte bulunmay\u0131 isterim. Bu ekiple \u015fu ana kadar bireysel kampanyalarla beraber toplam 29 kampanyaya kat\u0131ld\u0131k.\u201d<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Rabia \u00c7etin \/tr.euronews.com T\u00fcrkiye\u2019de son zamanlarda \u00f6zellikle sosyal medyada en aktif y\u00fcr\u00fct\u00fclen kampanyalardan biri SMA kampanyas\u0131. Aileler sosyal medyadan a\u00e7t\u0131klar\u0131 hesaplar \u00fczerinden ba\u011f\u0131\u015f yoluyla kampanya y\u00fcr\u00fcterek SMA hastas\u0131 bebeklerini ABD, Avrupa\u2019ya tedaviye g\u00f6ndermeye \u00e7al\u0131\u015f\u0131yor. SMA kampanyalar\u0131nda en s\u0131k duyulan ilac\u0131n ismi isen Zolngensma. Tek seferlik verilen bu ilac\u0131n maliyeti 2 ila 3 milyon dolar aras\u0131nda.\u00a0 …<\/p>\n","protected":false},"author":2,"featured_media":3353,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_mi_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0},"categories":[1,191],"tags":[159,295],"yoast_head":"\nSMA nedir, tedavisi neden bu kadar pahal\u0131, T\u00fcrkiye\u2019deki tart\u0131\u015fmalar neler? - UMUT AGAC\u0130<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/umutagaci.com\/2023\/01\/08\/sma-nedir-tedavisi-neden-bu-kadar-pahali-turkiyedeki-tartismalar-neler\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"SMA nedir, tedavisi neden bu kadar pahal\u0131, T\u00fcrkiye\u2019deki tart\u0131\u015fmalar neler? - UMUT AGAC\u0130\" \/>\n<meta property=\"og:description\" content=\"Rabia \u00c7etin \/tr.euronews.com T\u00fcrkiye\u2019de son zamanlarda \u00f6zellikle sosyal medyada en aktif y\u00fcr\u00fct\u00fclen kampanyalardan biri SMA kampanyas\u0131. 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