{"id":18129,"date":"2014-10-29T11:27:13","date_gmt":"2014-10-29T10:27:13","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=18129"},"modified":"2014-10-29T15:17:30","modified_gmt":"2014-10-29T14:17:30","slug":"petice-zada-o-financni-pomoc-lupenkarum","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=18129","title":{"rendered":"Petice lup\u00e9nk\u00e1\u0159\u016f \u017e\u00e1d\u00e1 o finan\u010dn\u00ed pomoc"},"content":{"rendered":"

Sv\u011btov\u00fd den lup\u00e9nky dnes ve st\u0159edu 29. \u0159\u00edjna p\u0159ipom\u00edn\u00e1 jednu z nejhor\u0161\u00edch ko\u017en\u00edch chorob. Posti\u017een\u00ed p\u0159i t\u00e9 p\u0159\u00edle\u017eitosti \u017e\u00e1daj\u00ed aspo\u0148 o \u010d\u00e1ste\u010dn\u00e9 hrazen\u00ed p\u0159\u00edrodn\u00ed l\u00e9\u010dby zdravotn\u00edmi poji\u0161\u0165ovnami. O tu \u017e\u00e1d\u00e1 petice, podeps\u00e1na v\u00edce ne\u017e tis\u00edcem podpis\u016f pacient\u016f, kterou ji\u017e obdr\u017eel ministr zdravotnictv\u00ed a z\u00e1stupci zdravotn\u00edch poji\u0161\u0165oven.<\/strong> <\/p>\n

ilustra\u010dn\u00ed foto: Photoxpress<\/p>\n

N\u011bkte\u0159\u00ed pacienti i l\u00e9ka\u0159i hovo\u0159\u00ed o v\u00fdjime\u010dn\u00fdch \u00fa\u010dinc\u00edch p\u0159\u00edrodn\u00edch, bylinn\u00fdch p\u0159\u00edpravk\u016f, kter\u00e9 se do \u010ceska dov\u00e1\u017eej\u00ed z Austr\u00e1lie. Testovan\u00e9 p\u0159\u00edrodn\u00ed p\u0159\u00edpravky v\u0161ak poji\u0161\u0165ovny nehrad\u00ed.<\/p>\n

\u010cesk\u00e1 legislativa toti\u017e \u0159ad\u00ed tyto p\u0159\u00edpravky do kosmetiky, nepova\u017euje je za l\u00e9\u010diva, tud\u00ed\u017e je poji\u0161\u0165ovny nemohou hradit.<\/p>\n

Proto vznikla petice ur\u010den\u00e1 ministr\u016fm a \u0159editel\u016fm poji\u0161\u0165oven, kter\u00e1 je vyz\u00fdv\u00e1 k nadstandardn\u00ed podpo\u0159e p\u0159\u00edrodn\u00edch p\u0159\u00edpravk\u016f.<\/p>\n

Petice navrhuje zm\u011bnu legislativy tak, aby byly nazv\u00e1ny jako „l\u00e9\u010div\u00fd p\u0159\u00edpravek, kter\u00fd nelze pova\u017eovat za l\u00e9k, ale jsou uzn\u00e1ny jeho l\u00e9\u010div\u00e9 \u00fa\u010dinky“. Tak to ji\u017e pr\u00fd funguje nap\u0159\u00edklad v Ma\u010farsku.<\/p>\n

K petici se p\u0159ipojili p\u0159edn\u00ed \u010de\u0161t\u00ed odborn\u00edci, mezi nimi z\u00e1stupci Fakultn\u00ed nemocnice v Motole a Na Bulovce. Studie l\u00e9\u010dby p\u0159\u00edrodn\u00edmi p\u0159\u00edpravky provedli tak\u00e9 l\u00e9ka\u0159i z Fakultn\u00ed nemocnice Kr\u00e1lovsk\u00e9 Vinohrady, Plze\u0148 a Hradec Kr\u00e1lov\u00e9. Potvrdili a\u017e 82 procentn\u00ed \u00fa\u010dinnost l\u00e9\u010dby.<\/p>\n

„Jejich hlavn\u00ed v\u00fdhodou je bezpe\u010dnost \u2013 jsou to p\u0159\u00edpravky p\u0159\u00edrodn\u00ed, neobsahuj\u00ed \u017e\u00e1dn\u00e9 kortikosteroidy. Proto jsou vhodn\u00e9 k vyu\u017eit\u00ed mimo jin\u00e9 tak\u00e9 u d\u011bt\u00ed a v gravidit\u011b,“ uv\u00e1d\u00ed ve vyj\u00e1d\u0159en\u00ed pro petici prezidentka Evropsk\u00e9 akademie dermatovenerologie Jana Hercogov\u00e1.<\/p>\n

Biologick\u00e1 l\u00e9\u010dba jednoho pacienta s t\u011b\u017ekou lup\u00e9nkou m\u016f\u017ee st\u00e1t ro\u010dn\u011b a\u017e 300 000 korun. Pokud se pacienti l\u00e9\u010d\u00ed pomoc\u00ed p\u0159\u00edrodn\u00edch australsk\u00fdch produkt\u016f, pak je podle z\u00e1stupc\u016f petice cena t\u011bchto p\u0159\u00edpravk\u016f pouze 4 000 a\u017e 6 000 korun, kter\u00e9 si v\u0161ak mus\u00ed platit pacient s\u00e1m.<\/p>\n

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Biologick\u00e1 l\u00e9\u010dba zbav\u00ed t\u011blo lup\u00e9nky. Je v\u0161ak drah\u00e1<\/h2>\n

\u017divot v t\u011ble pln\u00e9m sv\u011bd\u00edc\u00edch skvrn nen\u00ed snadn\u00fd. „Lid\u00e9 se n\u00e1m zdr\u00e1haj\u00ed podat ruku, vad\u00ed n\u00e1m st\u00e1le such\u00e1, nebo naopak mastn\u00e1 poko\u017eka, z\u00e1pach a barva l\u00e9\u010div\u00fdch p\u0159\u00edpravk\u016f, \u010dasov\u00e1 n\u00e1ro\u010dnost nan\u00e1\u0161en\u00ed mast\u00ed i celkov\u00e9 doby l\u00e9\u010dby, lupy, kter\u00e9 jsou v\u0161ude, rann\u00ed ztuhlost a bolest,“ uvedl pro den\u00edk MfD Josef Poh\u016fnek, kter\u00fd je p\u0159edsedou Spole\u010dnosti psoriatik\u016f a atopick\u00fdch ekzematik\u016f.<\/p>\n

Z pr\u016fzkumu agentury Ipsos, kter\u00e1 se nemocn\u00fdch lup\u00e9nkou dotazovala na jejich \u017eivot, vyplynulo, \u017ee t\u00e9m\u011b\u0159 t\u0159etina z nich je kv\u016fli sv\u00e9 diagn\u00f3ze znev\u00fdhodn\u011bna v pr\u00e1ci: 12 procent pacient\u016f je v \u010d\u00e1ste\u010dn\u00e9m, 13 procent v pln\u00e9m invalidn\u00edm<\/span> d\u016fchodu, a t\u0159i procenta dokonce bez zam\u011bstn\u00e1n\u00ed i penze.<\/p>\n

„Neum\u00edme odstranit p\u0159\u00ed\u010dinu nemoci, l\u00e9\u010dbou jen tlum\u00edme nebo na omezenou dobu odstra\u0148ujeme projevy,“ p\u0159izn\u00e1v\u00e1 profesor Petr Arenberger, kter\u00fd vede Dermatovenerologickou kliniku Fakultn\u00ed nemocnice Kr\u00e1lovsk\u00e9 Vinohrady. Pr\u00e1v\u011b tady se nach\u00e1z\u00ed Centrum pro l\u00e9\u010dbu lup\u00e9nky, kter\u00e9 nab\u00edz\u00ed pacient\u016fm pomoc. Bez n\u00ed toti\u017e m\u016f\u017ee choroba zkr\u00e1tit nemocn\u00fdm \u017eivot a\u017e o deset let.<\/p>\n

Nemocn\u00ed i dermatologov\u00e9 se up\u00ednaj\u00ed k takzvan\u00e9 biologick\u00e9 l\u00e9\u010db\u011b.\u00a0 Jen\u017ee je nesm\u00edrn\u011b drah\u00e1. „Cena ro\u010dn\u00ed l\u00e9\u010dby jednoho pacienta se pohybuje podle typu l\u00e9ku a dal\u0161\u00edch parametr\u016f kolem 200 a\u017e 300 tis\u00edc korun,“ vypo\u010d\u00edt\u00e1v\u00e1 profesor dermatologie, pro\u010d se u n\u00e1s injekcemi \u010di infuzemi l\u00e9\u010d\u00ed necel\u00fdch 1 300 pacient\u016f, tedy n\u011bco p\u0159es p\u016fl procenta nemocn\u00fdch.<\/p>\n

„Podle krit\u00e9ri\u00ed m\u016f\u017ee b\u00fdt biologick\u00e1 l\u00e9\u010dba nasazena jen u t\u011b\u017ek\u00e9 lup\u00e9nky, kdy je zasa\u017eeno v\u00edce ne\u017e 10 procent povrchu t\u011bla a kde nelze pou\u017e\u00edt jin\u00e9 l\u00e9\u010debn\u00e9 postupy,“ vysv\u011btluje Arenberger.<\/p>\n

Pokud takov\u00fd pacient dostane biologickou l\u00e9\u010dbu, \u00fapln\u011b se mu zm\u011bn\u00ed \u017eivot. Podle pr\u016fzkumu spole\u010dnosti Ipsos: zat\u00edmco p\u0159ed l\u00e9\u010dbou se c\u00edtilo nemoc\u00ed hodn\u011b omezeno p\u0159i pr\u00e1ci doma, na zahrad\u011b \u010di p\u0159i nakupov\u00e1n\u00ed 64 procent pacient\u016f, po \u010dty\u0159iceti t\u00fddnech aplikov\u00e1n\u00ed biologik 57 procent z nich potvrdilo, \u017ee je lup\u00e9nka neomezuje v\u016fbec.<\/p>\n

V\u011bt\u0161ina pacient\u016f se ov\u0161em mus\u00ed spolehnout na m\u00e9n\u011b sofistikovan\u00e9 metody l\u00e9\u010dby. Lidem s m\u00edrnou formou choroby pom\u00e1haj\u00ed kr\u00e9my a masti s obsahem kortikoid\u016f, dehtu, deriv\u00e1t\u016f vitaminu D nebo kyseliny salicylov\u00e9.<\/p>\n

„Jestli\u017ee to nesta\u010d\u00ed, p\u0159istupujeme ke sv\u011btlol\u00e9\u010db\u011b,“ popisuje\u00a0dermatolo\u017eka Martina Kojanov\u00e1 ze V\u0161eobecn\u00e9 fakultn\u00ed nemocnice metodu, p\u0159i n\u00ed\u017e nemocn\u00fdm pom\u00e1h\u00e1 ultrafialov\u00e9 z\u00e1\u0159en\u00ed ze speci\u00e1ln\u00edch lamp a laser\u016f. „Fototerapii je vhodn\u00e9 kombinovat s balneoterapi\u00ed, tedy l\u00e1zn\u011bmi. Vhodn\u00e9 jsou i pobyty u mo\u0159e, na lup\u00e9nku ide\u00e1ln\u011b u Mrtv\u00e9ho mo\u0159e,“ dopl\u0148uje Arenberger.<\/p>\n

Pokud ani tato l\u00e9\u010dba nezabere, jsou na \u0159ad\u011b l\u00e9ky \u2013 cytostatika, imunosupresiva nebo deriv\u00e1ty vitaminu A. Tedy mnohdy nic p\u0159\u00edjemn\u00e9ho.<\/p>\n

V okoln\u00edch zem\u00edch m\u00e1 p\u0159itom na biologickou l\u00e9\u010dbu n\u00e1rok mnohem v\u00edc pacient\u016f ne\u017e v tuzemsku. Jenom\u017ee nejsou pen\u00edze.<\/p>\n

—<\/p>\n

Lup\u00e9nka (psori\u00e1za)<\/p>\n

– Chronick\u00e9 a nevyl\u00e9\u010diteln\u00e9 neinfek\u010dn\u00ed onemocn\u011bn\u00ed postihuje p\u0159edev\u0161\u00edm k\u016f\u017ei, ale tak\u00e9 nehty a klouby.<\/p>\n

– Nemoc\u00ed trp\u00ed p\u0159ibli\u017en\u011b dv\u011b a\u017e t\u0159i procenta populace, v \u010cesku se odhaduje po\u010det nemocn\u00fdch na 250 000. Kolem 50 a\u017e 60 procent pacient\u016f trp\u00ed lehkou formou choroby, asi 30 procent st\u0159edn\u011b t\u011b\u017ekou a 15 procent t\u011b\u017ekou.<\/p>\n

– Pro propuknut\u00ed nemoci jsou dv\u011b „kritick\u00e1“ obdob\u00ed \u2013 kolem 20 let a pak kolem 50 let v\u011bku. Lup\u00e9nka, kter\u00e1 se projevuje hlavn\u011b jako \u010derven\u00e1 \u0161upinat\u00e1 lo\u017eiska na k\u016f\u017ei, je\u017e se olupuj\u00ed, je p\u0159ibli\u017en\u011b ve 30 procentech d\u011bdi\u010dn\u00e1. P\u0159i vzniku je velmi pravd\u011bpodobn\u00e1 i \u00fa\u010dast imunitn\u00edho syst\u00e9mu. Jak biologick\u00e1 l\u00e9\u010dba pom\u00e1h\u00e1<\/p>\n

Co je biologick\u00e1 l\u00e9\u010dba? Biologick\u00e1 neboli c\u00edlen\u00e1 l\u00e9\u010dba vyu\u017e\u00edv\u00e1 obranyschopnosti organismu k boji proti rakovin\u011b \u010di n\u011bkter\u00fdm autoimunitn\u00edm chorob\u00e1m. D\u00edky tomu, \u017ee v\u011bdci l\u00e9pe poznali struktury a pochody na povrchu i uvnit\u0159 bu\u0148ky, mohou hledat takov\u00e9 molekuly, kter\u00e9 jsou typick\u00e9 pouze pro bu\u0148ky spojen\u00e9 s n\u00e1dorov\u00fdm nebo autoimunitn\u00edm onemocn\u011bn\u00edm. Biologick\u00e1 l\u00e9\u010diva tak p\u016fsob\u00ed pouze na tyto molekuly, zlep\u0161uj\u00ed \u010di opravuj\u00ed schopnost sebeobrany organismu. Ve srovn\u00e1n\u00ed s klasickou l\u00e9\u010dbou tuto doprov\u00e1z\u00ed daleko m\u00e9n\u011b a ne tak v\u00fdznamn\u00fdch ne\u017e\u00e1douc\u00edch \u00fa\u010dink\u016f (by\u0165 se jich tak\u00e9 \u0159ada vyskytuje).<\/p>\n

Co zjistil pr\u016fzkum mezi pacienty s lup\u00e9nkou?<\/p>\n

Kolik procent nemocn\u00fdch se c\u00edtilo na ve\u0159ejnosti v rozpac\u00edch kv\u016fli stavu k\u016f\u017ee? 76 % p\u0159ed za\u010d\u00e1tkem biologick\u00e9 l\u00e9\u010dby 22 % 40 t\u00fddn\u016f po aplikaci 1. d\u00e1vky<\/p>\n

Kolika procent\u016fm pacient\u016f p\u0159ek\u00e1\u017eela nemoc v b\u011b\u017en\u00e9 pr\u00e1ci i p\u0159i n\u00e1kupech? 64 % P\u0159ed za\u010d\u00e1tkem biologick\u00e9 l\u00e9\u010dby 16 % 40 t\u00fddn\u016f po aplikaci 1. d\u00e1vky<\/p>\n

Kolika procent\u016fm nemocn\u00fdch lup\u00e9nka negativn\u011b ovliv\u0148uje \u017eivot? 81 % P\u0159ed za\u010d\u00e1tkem biologick\u00e9 l\u00e9\u010dby 32 % 40 t\u00fddn\u016f po aplikaci 1. d\u00e1vky<\/p>\n

Kolik procent pacient\u016f omezuje lup\u00e9nka v zam\u011bstn\u00e1n\u00ed? 62 % je zam\u011bstn\u00e1no na pln\u00fd \u00favazek 2 % maj\u00ed zkr\u00e1cen\u00fd pracovn\u00ed \u00favazek 10 % podnik\u00e1 12 % je v \u010d\u00e1ste\u010dn\u00e9m invalidn\u00edm<\/span> d\u016fchodu 13 % je v pln\u00e9m invalidn\u00edm<\/span> d\u016fchodu 7 % je v penzi 3 % jsou bez pr\u00e1ce i bez d\u016fchodu Zdroj: pr\u016fzkum spole\u010dnosti Ipsos mezi pacienty s lup\u00e9nkou v letech 2012\u20132014<\/p>\n

redak\u010dn\u011b kr\u00e1ceno, v\u00edce informac\u00ed v pond\u011bln\u00edm vyd\u00e1n\u00ed MF DNES<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Sv\u011btov\u00fd den lup\u00e9nky dnes ve st\u0159edu 29. \u0159\u00edjna p\u0159ipom\u00edn\u00e1 jednu z nejhor\u0161\u00edch ko\u017en\u00edch chorob. Posti\u017een\u00ed p\u0159i t\u00e9 p\u0159\u00edle\u017eitosti \u017e\u00e1daj\u00ed aspo\u0148 o \u010d\u00e1ste\u010dn\u00e9 hrazen\u00ed p\u0159\u00edrodn\u00ed l\u00e9\u010dby […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":17871,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-18129","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/18129","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=18129"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/18129\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/17871"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=18129"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=18129"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=18129"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}