Az say\u0131da da olsa g\u00f6r\u00fclen ve T\u00fcrkiye’de de rastlanan (XP) hastal\u0131\u011f\u0131 i\u00e7in, hastalar\u0131n \u00f6zel koruyucu giysilere ihtiyac\u0131 vard\u0131r. Bu giysilerin \u00fccretleri SGK kapsam\u0131nda olmad\u0131\u011f\u0131 i\u00e7in hastalar ve hasta yak\u0131nlar\u0131 b\u00fcy\u00fck ma\u011fduriyetler ya\u015famakta ve hastalar \u00e7ok a\u011f\u0131r ko\u015fullar alt\u0131nda ya\u015famaktad\u0131rlar. Bu durum, hastalar i\u00e7in heyeti tehlikeye varmaktad\u0131r. Bu konuda Sa\u011fl\u0131k Bakan\u0131n\u0131n yan\u0131tlamas\u0131 istemiyle TBMM Ba\u015fkanl\u0131\u011f\u0131na Soru \u00d6nergesi verdik.<\/p>\n\n\n\n
\nT\u00dcRK\u0130YE B\u00dcY\u00dcK M\u0130LLET MECL\u0130S\u0130 BA\u015eKANLI\u011eINA<\/strong><\/p>\n\n\n\n
A\u015fa\u011f\u0131daki sorular\u0131n Sa\u011fl\u0131k Bakan\u0131 Kemal MEM\u0130\u015eO\u011eLU<\/strong> taraf\u0131ndan Anayasa\u2019n\u0131n 98\u2019inci ve \u0130\u00e7t\u00fcz\u00fc\u011f\u00fcn 96\u2019nc\u0131 ve 99\u2019uncu maddeleri gere\u011fince yaz\u0131l\u0131 olarak cevapland\u0131r\u0131lmas\u0131n\u0131 arz ederim.<\/p>\n\n\n\n
\u0130brahim AKIN<\/strong><\/p>\n\n\n\n
\u0130zmir Milletvekili<\/strong><\/p>\n\n\n\n
Xeroderma Pigmentosum (XP) hastal\u0131\u011f\u0131 d\u00fcnya genelinde 100.000\u2019de 1 g\u00f6r\u00fclmekte olup nadir hastal\u0131klar aras\u0131ndad\u0131r. XP, ultraviyole (UV) \u0131\u015f\u0131\u011f\u0131n\u0131n neden oldu\u011fu DNA hasar\u0131n\u0131 onarma yetene\u011finin azald\u0131\u011f\u0131 genetik bir hastal\u0131kt\u0131r. T\u00fcrkiye\u2019de bu durumda yakla\u015f\u0131k 100 ki\u015fi bulundu\u011fu tahmin edilmektedir. Semptomlar g\u00fcne\u015fte birka\u00e7 dakika kald\u0131ktan sonra bile geli\u015fen \u015fiddetli g\u00fcne\u015f yan\u0131\u011f\u0131, g\u00fcne\u015fe maruz kalan b\u00f6lgelerde yara\/t\u00fcm\u00f6r olu\u015fumu, kuru cilt ve cilt pigmentasyonundaki de\u011fi\u015fikliklerdir. Bu hastal\u0131\u011fa sahip olan ki\u015filer g\u00fcne\u015fe ya hi\u00e7 \u00e7\u0131kamamakta ya da koruyucu giysilerle \u00e7\u0131kabilmektedirler. \u00c7o\u011funlukla g\u00fcne\u015f batt\u0131ktan sonra sosyal hayata kar\u0131\u015fabilmektedirler. Buna ba\u011fl\u0131 olarak okul e\u011fitimleri aksamakta, i\u015f hayat\u0131na dahil olamamaktad\u0131rlar.<\/p>\n\n\n\n
Bu hastal\u0131k \u00f6zelinde hastalar\u0131n \u00e7e\u015fitli gereksinimleri olmaktad\u0131r. Bunlar aras\u0131nda maliyeti y\u00fcksek olan UV koruyucu giysiler, hava UV \u00f6l\u00e7\u00fcm cihazlar\u0131, \u00e7e\u015fitli vitamin, mineral ve g\u00fcne\u015f koruyucu kremler bulunmaktad\u0131r. Bunlar zaruri olmayan \u00fcr\u00fcnler kategorisindedir fakat bu hastal\u0131k \u00f6zelinde zaruridir. Dolay\u0131s\u0131yla y\u00fcksek maliyetli bu \u00fcr\u00fcnlerin temini insan haklar\u0131na ayk\u0131r\u0131 bir bi\u00e7imde hastalar\u0131n \u00fczerine kalmaktad\u0131r. <\/p>\n\n\n\n
Bu ba\u011flamda;<\/p>\n\n\n\n
1. Bakanl\u0131\u011f\u0131n\u0131zca T\u00fcrkiye\u2019de ka\u00e7 ki\u015fide XP hastal\u0131\u011f\u0131 tespit edilmi\u015ftir?<\/p>\n\n\n\n
2. Bu hastal\u0131kla ilgili bakanl\u0131\u011f\u0131n\u0131z\u0131n kurumsal olarak y\u00fcr\u00fctt\u00fc\u011f\u00fc ya da ortak olarak dahil oldu\u011fu uluslararas\u0131 bir \u00e7al\u0131\u015fma, proje ya da ara\u015ft\u0131rma var m\u0131d\u0131r? Varsa nelerdir?<\/p>\n\n\n\n
3. Bu hastalar\u0131n kullanmak zorunda oldu\u011fu D vitamini, Omega vb. takviye g\u0131dan\u0131n bakanl\u0131k\u00e7a kar\u015f\u0131lanmas\u0131 veya SGK geri \u00f6deme sistemi kapsam\u0131na al\u0131nmas\u0131na dair bir \u00e7al\u0131\u015fma var m\u0131d\u0131r?<\/p>\n\n\n\n
4. G\u00fcne\u015f koruyucu kremlerin bu ve buna benzer hastal\u0131klar ba\u011flam\u0131nda bir zorunluluk oldu\u011fu d\u00fc\u015f\u00fcn\u00fcld\u00fc\u011f\u00fcnde neden SGK geri \u00f6deme kapsam\u0131nda kar\u015f\u0131lanmamaktad\u0131r?<\/p>\n\n\n\n
5. UV koruyucu giysi ve UV \u00f6l\u00e7\u00fcm cihazlar\u0131 SGK geri \u00f6deme listesine dahil midir?<\/p>\n\n\n\n
6. XP tan\u0131s\u0131 ile ba\u015fvuran hastalar\u0131n UV koruyucu giysi ve UV \u00f6l\u00e7\u00fcm cihazlar\u0131na eri\u015fiminin \u00f6n\u00fcndeki engellerden biri g\u00fcmr\u00fck vergisidir. Bunun de\u011fi\u015ftirilmesi \u00fczerine bir \u00e7al\u0131\u015fma var m\u0131d\u0131r?<\/p>\n<\/blockquote>\n","protected":false},"excerpt":{"rendered":"
Az say\u0131da da olsa g\u00f6r\u00fclen ve T\u00fcrkiye’de de rastlanan (XP) hastal\u0131\u011f\u0131 i\u00e7in, hastalar\u0131n \u00f6zel koruyucu giysilere ihtiyac\u0131 vard\u0131r. Bu giysilerin \u00fccretleri SGK kapsam\u0131nda olmad\u0131\u011f\u0131 i\u00e7in […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":1099,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"footnotes":""},"categories":[13],"tags":[],"class_list":["post-1098","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-soru-onergeleri"],"aioseo_notices":[],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"https:\/\/ibrahimakin.net\/wp-content\/uploads\/2024\/07\/xp-web.jpg","_links":{"self":[{"href":"https:\/\/ibrahimakin.net\/index.php\/wp-json\/wp\/v2\/posts\/1098","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ibrahimakin.net\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/ibrahimakin.net\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/ibrahimakin.net\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/ibrahimakin.net\/index.php\/wp-json\/wp\/v2\/comments?post=1098"}],"version-history":[{"count":1,"href":"https:\/\/ibrahimakin.net\/index.php\/wp-json\/wp\/v2\/posts\/1098\/revisions"}],"predecessor-version":[{"id":1100,"href":"https:\/\/ibrahimakin.net\/index.php\/wp-json\/wp\/v2\/posts\/1098\/revisions\/1100"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ibrahimakin.net\/index.php\/wp-json\/wp\/v2\/media\/1099"}],"wp:attachment":[{"href":"https:\/\/ibrahimakin.net\/index.php\/wp-json\/wp\/v2\/media?parent=1098"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ibrahimakin.net\/index.php\/wp-json\/wp\/v2\/categories?post=1098"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ibrahimakin.net\/index.php\/wp-json\/wp\/v2\/tags?post=1098"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}