{"id":1551,"date":"2020-02-21T14:39:20","date_gmt":"2020-02-21T13:39:20","guid":{"rendered":"http:\/\/klubcf.sk\/?p=1551"},"modified":"2021-02-23T14:01:01","modified_gmt":"2021-02-23T13:01:01","slug":"peticia-za-preplacanie-modernej-liecby-pre-pacientov-s-cystickou-fibrozou","status":"publish","type":"post","link":"https:\/\/klubcf.sk\/index.php\/2020\/02\/21\/peticia-za-preplacanie-modernej-liecby-pre-pacientov-s-cystickou-fibrozou\/","title":{"rendered":"Pet\u00edcia za prepl\u00e1canie modernej lie\u010dby pre pacientov s cystickou fibr\u00f3zou."},"content":{"rendered":"<p><a href=\"https:\/\/www.peticie.com\/peticia_za_preplacanie_modernej_lieby_pre_pacientov_s_cystickou_fibrozou\">PET\u00cdCIU m\u00f4\u017eete PODPORI\u0164 TU&nbsp;<\/a><\/p>\n<p><strong>Minister zdravotn\u00edctva SR,&nbsp;<\/strong>Limbov\u00e1 2,&nbsp;P.O. BOX 52,&nbsp;837 52 Bratislava 37<\/p>\n<p><strong>\u00darad vl\u00e1dy SR,&nbsp;<\/strong>N\u00e1mestie slobody 1,&nbsp;811 06 Bratislava<\/p>\n<p><strong>V\u0161eobecn\u00e1 zdravotn\u00e1 pois\u0165ov\u0148a, a.s.&nbsp;<\/strong>Pan\u00f3nska cesta 2,&nbsp;85104 Bratislava<\/p>\n<p><strong>D\u00f4vera zdravotn\u00e1 pois\u0165ov\u0148a, a.s.,&nbsp;<\/strong>Einsteinova 19,&nbsp;85101 Bratislava<\/p>\n<p><strong>Union pois\u0165ov\u0148a, a.s.,&nbsp;<\/strong>Laurinsk\u00e1 9,&nbsp;811 09 Bratislava<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Cystick\u00e1 fibr\u00f3z<\/strong><strong>a<\/strong>&nbsp;(CF) je z\u00e1va\u017en\u00e9 genetick\u00e9 ochorenie, ktor\u00e9 negat\u00edvne ovplyv\u0148uje kvalitu \u017eivota a skracuje d\u013a\u017eku \u017eivota. CF nie je n\u00e1kazliv\u00e1! Je to dedi\u010dn\u00e9 ochorenie, s ktor\u00fdm sa \u010dlovek narod\u00ed. \u017d\u013eazy s vonkaj\u0161\u00edm vylu\u010dovan\u00edm tvoria abnorm\u00e1lne hust\u00fd a patologick\u00fd hlien, ktor\u00fd sa usadzuje na slizniciach a upch\u00e1va \u017eivotne d\u00f4le\u017eit\u00e9 org\u00e1ny. Jedn\u00e1 sa o progres\u00edvne a&nbsp;multi-org\u00e1nov\u00e9 ochorenie. Postihuje devasta\u010dn\u00fdm sp\u00f4sobom p\u013e\u00faca, pankreas, pe\u010de\u0148, tr\u00e1viacu s\u00fastavu, pridru\u017e\u00ed sa diabetes, osteopor\u00f3za, neplodnos\u0165, nosov\u00e9 polypy. Aktu\u00e1lna lie\u010dba cystickej fibr\u00f3zy je len symptomatick\u00e1, na spomalenie progresie ochorenia.<\/p>\n<p>Lie\u010dba pacienta s&nbsp;cystickou fibr\u00f3zou si vy\u017eaduje individu\u00e1lny, celo\u017eivotn\u00fd a n\u00e1ro\u010dn\u00fd re\u017eim, ktor\u00e9ho dodr\u017eiavanie \u010dasto pacientov obmedzuje v&nbsp;be\u017en\u00fdch denn\u00fdch aktivit\u00e1ch. Zvl\u00e1da\u0165 CF je \u0165a\u017ek\u00e9 a \u010dasovo n\u00e1ro\u010dn\u00e9 pre pacienta ako aj jeho rodinu.<\/p>\n<p>Napriek ve\u013ek\u00e9mu \u00fasiliu o z\u00e1chranu a starostlivos\u0165 zo strany komunity a na\u0161ich lek\u00e1rov, str\u00e1came pacientov hrozn\u00fdm sp\u00f4sobom vo ve\u013emi mladom veku, \u010dasto pred dosiahnut\u00edm dospelosti. Cystick\u00e1 fibr\u00f3za nepostihuje intelekt a pacienti v na\u0161ej komunite vedia dosiahnu\u0165 napriek diagn\u00f3ze a v\u010faka mimoriadnej snahe a sebazapreniu a&nbsp;okolnostiam, \u00fa\u017easn\u00e9 v\u00fdsledky v r\u00f4znych oblastiach a&nbsp;zaradeniach s pr\u00ednosom pre spolo\u010dnos\u0165.<\/p>\n<p>Po mnoh\u00fdch desa\u0165ro\u010diach v\u00fdskumu a v\u00fdvoja, od 50. rokov minul\u00e9ho storo\u010dia a\u017e po pochopenie podstaty choroby na genetickej a bunkovej \u00farovni, s\u00fa od roku 2012 uv\u00e1dzan\u00e9 na trhy vo svete prelomov\u00e9 lieky, korektory a modul\u00e1tory, na lie\u010dbu z\u00e1kladnej pr\u00ed\u010diny cystickej fibr\u00f3zy t. j. zlyh\u00e1vanie funkcie prote\u00ednu CFTR. T\u00e1to lie\u010dba je prevratn\u00e1, prv\u00e1 a nateraz jedin\u00e1 pr\u00ed\u010dinn\u00e1, nie symptomatick\u00e1 a&nbsp;umo\u017en\u00ed pacientom s&nbsp;ochoren\u00edm \u00fa\u010dinnej\u0161ie bojova\u0165.<\/p>\n<h3>Ako to funguje<\/h3>\n<h3>Cystick\u00e1 fibr\u00f3za je zapr\u00ed\u010dinen\u00e1 mut\u00e1ciou g\u00e9nu, zn\u00e1mych mut\u00e1ci\u00ed je okolo 2000. Zo v\u0161etk\u00fdch pacientov (u n\u00e1s) 60% m\u00e1 mut\u00e1ciu s&nbsp;n\u00e1zvom F508del. Vhodnos\u0165 novej pr\u00ed\u010dinnej lie\u010dby je dan\u00e1 pr\u00e1ve druhom mut\u00e1cie. Nov\u00e9 lieky s\u00fa schopn\u00e9 upravi\u0165 zle vygenerovan\u00fa bielkovinu a&nbsp;t\u00fdm sa uprav\u00ed \u010dinnos\u0165 \u017eliaz produkuj\u00facich hust\u00fd hlien.&nbsp;ORKAMBI<sup>\u00ae<\/sup>&nbsp;je liek vhodn\u00fd pre \u00fapravu bielkoviny produkovanej g\u00e9nom postihnut\u00fdm pr\u00e1ve takouto mut\u00e1ciou.&nbsp;ORKAMBI<sup>\u00ae<\/sup>&nbsp;tablety s\u00fa indikovan\u00e9 na lie\u010dbu cystickej fibr\u00f3zy (CF) pacientom , ktor\u00ed s\u00fa homozygotn\u00ed nosi\u010di mut\u00e1cie F508del v g\u00e9ne CFTR. Nie je teda vhodn\u00fd pre v\u0161etk\u00fdch pacientov, ale v&nbsp;Slovenskej Republike v&nbsp;s\u00fa\u010dasnosti \u017eije cca 85 pacientov, pre ktor\u00fdch by bola t\u00e1to lie\u010dba \u00fa\u010dinn\u00e1.<\/h3>\n<p><strong>V\u00fdsledky v\u00fdskumov a praktick\u00e9 sk\u00fasenosti odborn\u00edkov na lie\u010dbu CF<\/strong><\/p>\n<p>V&nbsp;\u0161t\u00fadi\u00e1ch z&nbsp;re\u00e1lnej klinickej praxe \u201ereal world\u201c s&nbsp;r\u00f4znymi dizajnmi a&nbsp;r\u00f4znymi ve\u013ekos\u0165ami s\u00faborov a&nbsp;d\u013a\u017ekami sledovania mala lie\u010dba&nbsp;<strong>ORKAMBI<\/strong><sup><strong>\u00ae<\/strong><\/sup>&nbsp;pozit\u00edvny vplyv na p\u013e\u00facne funkcie dokonca aj u&nbsp;pacientov so z\u00e1va\u017en\u00fdm ochoren\u00edm p\u013e\u00fac. Tieto zlep\u0161enia boli v\u0161eobecne paraleln\u00e9 s&nbsp;v\u00fdrazn\u00fdm zn\u00ed\u017een\u00edm koncentr\u00e1cie chloridov v&nbsp;pote, \u010do nazna\u010duje, \u017ee&nbsp;<strong>ORKAMBI<\/strong><sup><strong>\u00ae<\/strong><\/sup>&nbsp;rie\u0161i z\u00e1kladn\u00fd mechanizmus choroby u&nbsp;CF [Chiron, 2017; Hubert, 2017; Ratjen,2017; Rowe, 2017].&nbsp;<strong>ORKAMBI<\/strong><sup><strong>\u00ae<\/strong><\/sup>&nbsp;\u010falej zlep\u0161oval nutri\u010dn\u00fd stav pacientov prostredn\u00edctvom zv\u00fd\u0161enia BMI, zn\u00ed\u017eil riziko hospitaliz\u00e1cie, zn\u00ed\u017eil po\u010det p\u013e\u00facnych exacerb\u00e1ci\u00ed vy\u017eaduj\u00facich antibiotick\u00fa lie\u010dbu a&nbsp;pozit\u00edvne ovplyvnil kvalitu \u017eivota pacientov [Nayak,2017]. V jednej \u0161t\u00fadi\u00ed boli traja pacienti pozastaven\u00ed na \u010dakacej listine na transplant\u00e1ciu p\u013e\u00fac v&nbsp;d\u00f4sledku ich klinick\u00e9ho zlep\u0161enia po\u010das lie\u010dby s&nbsp;<strong>ORKAMBI<\/strong><sup><strong>\u00ae<\/strong><\/sup>&nbsp;[Murer, 2018]. D\u00f4kazy z&nbsp;klinickej praxe tie\u017e nazna\u010duj\u00fa priazniv\u00fd vplyv&nbsp;<strong>ORKAMBI<\/strong><sup><strong>\u00ae<\/strong><\/sup>&nbsp;pri diabete s\u00favisiacom s&nbsp;CF a&nbsp;zvy\u0161ovan\u00ed fyzickej z\u00e1\u0165a\u017ee&nbsp;[Chelva,, 2018; Misgault, 2018].<\/p>\n<p>Vy\u0161\u0161ie uveden\u00e9 priazniv\u00e9 \u00fa\u010dinky boli pozorovan\u00e9 vo v\u0161etk\u00fdch vekov\u00fdch kateg\u00f3ri\u00e1ch a&nbsp;\u00farovniach z\u00e1va\u017enosti ochorenia. To nazna\u010duje, \u017ee v\u010dasn\u00e1 lie\u010dba s&nbsp;<strong>ORKAMBI<\/strong><sup><strong>\u00ae<\/strong><\/sup>&nbsp;m\u00e1 potenci\u00e1l modifikova\u0165 progresiu ochorenia a&nbsp;zlep\u0161ova\u0165 kvalitu \u017eivota pacientov s&nbsp;CF s&nbsp;homozygotnou mut\u00e1ciou F508del CFTR.<\/p>\n<p><strong>Prepl\u00e1canie pois\u0165ov\u0148ami<\/strong><\/p>\n<p>V&nbsp;s\u00fa\u010dasnej dobe je ka\u017edodenn\u00e1 lie\u010dba pacienta zalo\u017een\u00e1 na pod\u00e1van\u00ed liekov na tlmenie prejavov ochorenia, na dychovej rehabilit\u00e1ci\u00ed a&nbsp;substit\u00faci\u00ed pankreatick\u00fdch enz\u00fdmov. T\u00e1to lie\u010dba v\u0161ak len spoma\u013euje priebeh ochorenia a&nbsp;tlm\u00ed najnaliehavej\u0161ie pr\u00edznaky. Je to ka\u017edodenn\u00fd boj o&nbsp;n\u00e1dych, \u010di telesn\u00fa hmotnos\u0165 a&nbsp;schopnos\u0165 str\u00e1vi\u0165 jedlo. V&nbsp;Eur\u00f3pe preto r\u00fdchlo prib\u00fadaj\u00fa \u0161t\u00e1ty, kde je inovat\u00edvna lie\u010dba hraden\u00e1 pois\u0165ov\u0148ami s&nbsp;cie\u013eom zabezpe\u010di\u0165 pacientom maxim\u00e1lne efekt\u00edvnu zdravotn\u00fa starostlivos\u0165.<\/p>\n<p><strong>Preto \u017eiadame, aby&nbsp;<\/strong><strong>ORKAMBI<\/strong><sup><strong>\u00ae<\/strong><\/sup>,<strong>&nbsp;liek pre pr\u00ed\u010dinn\u00fa lie\u010dbu cystickej fibr\u00f3zy, bol plne hraden\u00fd z Verejn\u00e9ho zdravotn\u00edctva pre v\u0161etk\u00fdch pacientov, ktor\u00ed sp\u013a\u0148aj\u00fa potrebn\u00e9 krit\u00e9ri\u00e1.<\/strong>&nbsp;&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><strong><img decoding=\"async\" src=\"https:\/\/www.peticie.com\/uploads\/images\/23738034_10213653414585408_1960065480330176854_o.jpg\" alt=\"23738034_10213653414585408_1960065480330176854_o.jpg\"><\/strong><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>PET\u00cdCIU m\u00f4\u017eete PODPORI\u0164 TU&nbsp; Minister zdravotn\u00edctva SR,&nbsp;Limbov\u00e1 2,&nbsp;P.O. BOX 52,&nbsp;837 52 Bratislava 37 \u00darad vl\u00e1dy SR,&nbsp;N\u00e1mestie slobody 1,&nbsp;811 06 Bratislava V\u0161eobecn\u00e1 zdravotn\u00e1 pois\u0165ov\u0148a, a.s.&nbsp;Pan\u00f3nska cesta 2,&nbsp;85104 Bratislava D\u00f4vera zdravotn\u00e1 pois\u0165ov\u0148a, a.s.,&nbsp;Einsteinova 19,&nbsp;85101 Bratislava Union pois\u0165ov\u0148a, a.s.,&nbsp;Laurinsk\u00e1 9,&nbsp;811 09 Bratislava &nbsp; Cystick\u00e1 fibr\u00f3za&nbsp;(CF) je z\u00e1va\u017en\u00e9 genetick\u00e9 ochorenie, ktor\u00e9 negat\u00edvne ovplyv\u0148uje kvalitu \u017eivota a skracuje d\u013a\u017eku \u017eivota. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1552,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-1551","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-klub-cf"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Pet\u00edcia za prepl\u00e1canie modernej lie\u010dby pre pacientov s cystickou fibr\u00f3zou. - klubcf.sk<\/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:\/\/klubcf.sk\/index.php\/2020\/02\/21\/peticia-za-preplacanie-modernej-liecby-pre-pacientov-s-cystickou-fibrozou\/\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Pet\u00edcia za prepl\u00e1canie modernej lie\u010dby pre pacientov s cystickou fibr\u00f3zou. - klubcf.sk\" \/>\n<meta property=\"og:description\" content=\"PET\u00cdCIU m\u00f4\u017eete PODPORI\u0164 TU&nbsp; Minister zdravotn\u00edctva SR,&nbsp;Limbov\u00e1 2,&nbsp;P.O. BOX 52,&nbsp;837 52 Bratislava 37 \u00darad vl\u00e1dy SR,&nbsp;N\u00e1mestie slobody 1,&nbsp;811 06 Bratislava V\u0161eobecn\u00e1 zdravotn\u00e1 pois\u0165ov\u0148a, a.s.&nbsp;Pan\u00f3nska cesta 2,&nbsp;85104 Bratislava D\u00f4vera zdravotn\u00e1 pois\u0165ov\u0148a, a.s.,&nbsp;Einsteinova 19,&nbsp;85101 Bratislava Union pois\u0165ov\u0148a, a.s.,&nbsp;Laurinsk\u00e1 9,&nbsp;811 09 Bratislava &nbsp; Cystick\u00e1 fibr\u00f3za&nbsp;(CF) je z\u00e1va\u017en\u00e9 genetick\u00e9 ochorenie, ktor\u00e9 negat\u00edvne ovplyv\u0148uje kvalitu \u017eivota a skracuje d\u013a\u017eku \u017eivota. 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