{"id":493,"date":"2018-07-19T09:51:48","date_gmt":"2018-07-19T09:51:48","guid":{"rendered":"http:\/\/www.aspe.ro\/?p=493"},"modified":"2018-07-19T09:57:46","modified_gmt":"2018-07-19T09:57:46","slug":"efort-comun-pentru-imbunatatirea-managementului-epilepsiei-in-romania","status":"publish","type":"post","link":"https:\/\/www.aspe.ro\/index.php\/efort-comun-pentru-imbunatatirea-managementului-epilepsiei-in-romania\/","title":{"rendered":"Efort comun pentru \u00eembun\u0103t\u0103\u021birea managementului epilepsiei \u00een Rom\u00e2nia"},"content":{"rendered":"<p class=\"yiv5504882710ydp824c6dbccaps\"><u>Acces limitat la tratament, inclusiv la metode de tratament alternativ, acces restr\u00e2ns la servicii medicale, la infoma\u021bii \u0219i la asisten\u021b\u0103 social\u0103 corespunz\u0103toare. Lipsa speciali\u0219tilor \u00een managementul epilepsiei, discriminarea la locul de munc\u0103 \u0219i \u00een comunitate, dar \u0219i indiferen\u021ba celor din jur. Acestea sunt principalele probleme cu care se confrunt\u0103 pacien\u021bii rom\u00e2ni cu epilepsie, punctate de profesioni\u0219tii din s\u0103n\u0103tate, autorit\u0103\u021bi, pacien\u021bi \u0219i reprezentan\u021bi ai asocia\u021biilor de pacien\u021bi, \u00een cadrul dezbaterii \u201eEpilepsia \u2013 o provocare real\u0103 pentru pacientul rom\u00e2n \u0219i o problem\u0103 major\u0103 de s\u0103n\u0103tate public\u0103\u201d.<\/u><\/p>\n<p>\u00cen Rom\u00e2nia nu exist\u0103 un registru na\u021bional al pacien\u021bilor cu epilepsie. Conform statisticilor interna\u021bionale, aproximativ 200.000 de rom\u00e2ni tr\u0103iesc cu aceast\u0103 boal\u0103, \u00eens\u0103 se estimeaz\u0103 c\u0103 num\u0103rul real ar fi dublu. Aproximativ 30% dintre ace\u0219tia nu r\u0103spund la tratament, ceea ce \u00eenseamn\u0103 c\u0103 sunt farmacorezisten\u021bi. Ei sunt cei care au de \u00eenfruntat cele mai multe greut\u0103\u021bi at\u00e2t din punct de vedere social, c\u00e2t \u0219i medical, fiindc\u0103 au \u0219i foarte pu\u021bine op\u021biuni terapeutice pentru a controla crizele epileptice. \u201eDac\u0103 un pacient a trecut prin dou\u0103 terapii corect alese, corect administrate \u0219i corect dozate, putem spune c\u0103 acest pacient este farmacorezistent. Trebuie s\u0103 evalu\u0103m dac\u0103 pacientul este un candidat pentru chirurgie. Chirurgia poate duce la controlul bolii, \u00eens\u0103 reabilitarea postchirurgical\u0103 este destul de dificil\u0103. Din 2011, avem un program de explorare invaziv\u0103 a creierului pentru pacien\u021bii cu epilepsie farmacorezistent\u0103 care are succes la aproximativ 75% din pacien\u021bi. Dac\u0103 interven\u021bia nu reu\u0219e\u0219te s\u0103 controleze crizele, trebuie g\u0103site solu\u021bii \u0219i terapii noi\u201d, a declarat dr. Ioana M\u00eendru\u021b\u0103, coordonatorul Subprogramului Na\u021bional de Epilepsie Farmacorezistent\u0103 de la Spitalul Universitar de Urgen\u021b\u0103 Bucure\u0219ti.<\/p>\n<p>Pentru a avea acces la interven\u021biile chirurgicale, pacien\u021bii cu aceast\u0103 indica\u021bie au de a\u0219teptat chiar \u0219i un an la Spitalul Universitar. Trebuie spus c\u0103 interven\u021biile chirurgicale \u2014 opera\u0163ie pe creier, stimularea nervului vag sau stimularea profund\u0103 a creierului \u2014 nu elimin\u0103 administrarea medica\u021biei antiepileptice. Astfel, cea mai bun\u0103 alternativ\u0103 pentru ace\u0219tia ar fi accesul la noile terapii de genera\u021bia a treia, care ofer\u0103 o diminuare semnificativ\u0103 a num\u0103rul de crize. \u201e\u00cen Rom\u00e2nia, este \u00eenregistrat\u0103 marea majoritate a medicamentelor existente \u00een acest moment la nivel interna\u021bional \u0219i avem chiar \u0219i medicamente moderne [\u2026]. Problema este c\u0103 nu au acces to\u021bi pacien\u021bii la aceste medicamente \u0219i c\u0103 \u00eenc\u0103 exist\u0103 multe medicamente care nu sunt pe listele de compensare \u0219i numeroase medicamente care \u00eenc\u0103 nu au fost \u00eenregistrate. Nu exist\u0103 omogenitate\u201d, a explicat prof. univ. dr. Dana Craiu, pre\u0219edintele Societ\u0103\u021bii Rom\u00e2ne \u00cempotriva Epilepsiei.<\/p>\n<!-- default-view.php -->\n<div\n\tclass=\"ngg-galleryoverview default-view  ngg-ajax-pagination-none\"\n\tid=\"ngg-gallery-fe5e665d933f2e66e919ac08c548c54d-1\">\n\n\t\t<!-- Thumbnails -->\n\t\t\t\t<div id=\"ngg-image-0\" class=\"ngg-gallery-thumbnail-box \" >\n\t\t\t\t        <div class=\"ngg-gallery-thumbnail\">\n            <a href=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/3.jpg\"\n               title=\"\"\n               data-src=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/3.jpg\"\n               data-thumbnail=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/thumbs\/thumbs_3.jpg\"\n               data-image-id=\"71\"\n               data-title=\"3\"\n               data-description=\"\"\n               data-image-slug=\"3-10\"\n               class=\"shutterset_fe5e665d933f2e66e919ac08c548c54d\">\n                <img\n                    title=\"3\"\n           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data-src=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/40.jpg\"\n               data-thumbnail=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/thumbs\/thumbs_40.jpg\"\n               data-image-id=\"79\"\n               data-title=\"40\"\n               data-description=\"\"\n               data-image-slug=\"40\"\n               class=\"shutterset_fe5e665d933f2e66e919ac08c548c54d\">\n                <img\n                    title=\"40\"\n                    alt=\"40\"\n                    src=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/thumbs\/thumbs_40.jpg\"\n                    width=\"100\"\n                    height=\"75\"\n                    style=\"max-width:100%;\"\n                \/>\n            <\/a>\n        <\/div>\n\t\t\t\t\t\t\t<\/div> \n\t\t\t\n\t\t\t\t<div id=\"ngg-image-9\" class=\"ngg-gallery-thumbnail-box \" >\n\t\t\t\t        <div class=\"ngg-gallery-thumbnail\">\n            <a 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class=\"ngg-gallery-thumbnail\">\n            <a href=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/42.jpg\"\n               title=\"\"\n               data-src=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/42.jpg\"\n               data-thumbnail=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/thumbs\/thumbs_42.jpg\"\n               data-image-id=\"81\"\n               data-title=\"42\"\n               data-description=\"\"\n               data-image-slug=\"42\"\n               class=\"shutterset_fe5e665d933f2e66e919ac08c548c54d\">\n                <img\n                    title=\"42\"\n                    alt=\"42\"\n                    src=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/thumbs\/thumbs_42.jpg\"\n                    width=\"100\"\n                    height=\"75\"\n                    style=\"max-width:100%;\"\n                \/>\n            <\/a>\n        <\/div>\n\t\t\t\t\t\t\t<\/div> \n\t\t\t\n\t\t\t\t<div id=\"ngg-image-11\" class=\"ngg-gallery-thumbnail-box \" >\n\t\t\t\t        <div class=\"ngg-gallery-thumbnail\">\n            <a href=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/43.jpg\"\n               title=\"\"\n               data-src=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/43.jpg\"\n               data-thumbnail=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/thumbs\/thumbs_43.jpg\"\n               data-image-id=\"82\"\n               data-title=\"43\"\n               data-description=\"\"\n               data-image-slug=\"43\"\n               class=\"shutterset_fe5e665d933f2e66e919ac08c548c54d\">\n                <img\n                    title=\"43\"\n                    alt=\"43\"\n                    src=\"https:\/\/www.aspe.ro\/wp-content\/gallery\/19iul\/thumbs\/thumbs_43.jpg\"\n                    width=\"100\"\n                    height=\"75\"\n                    style=\"max-width:100%;\"\n                \/>\n            <\/a>\n        <\/div>\n\t\t\t\t\t\t\t<\/div> \n\t\t\t\n\t\n\t<br style=\"clear: both\" \/>\n\n\t\n\t\t<!-- Pagination -->\n\t<div class='ngg-clear'><\/div>\t<\/div>\n\n<p><strong>Avantajele tratamentelor de\u00a0genera\u021bia a III-a<\/strong><\/p>\n<p>Rezultatele unei analize comparate \u00eentre noile medicamente \u0219i terapia standard arat\u0103 c\u0103, \u00een general, noile medicamente au aceea\u0219i eficacitate ca terapia standard. \u00cen anumite cazuri, cum este sindromul Lennox-Gastaut, numai terapia de genera\u021bia a treia s-a dovedit eficient\u0103. \u201eMult mai important este c\u0103 noile terapii pot fi clar diferen\u021biate de terapia standard \u00een ceea ce prive\u0219te \u00eembun\u0103t\u0103\u021birea calit\u0103\u021bii vie\u021bii. Au mult mai pu\u021bine efecte adverse \u0219i un profil de toxicitate \u0219i siguran\u021b\u0103 mult \u00eembun\u0103t\u0103\u021bit. \u00cen trecut, c\u00e2nd erau disponibile foarte pu\u021bine medicamente antiepileptice, pacien\u021bii no\u0219tri erau condamna\u021bi s\u0103 tr\u0103iasc\u0103 fie o via\u021b\u0103 plin\u0103 de crize, fie o via\u021b\u0103 compromis\u0103 de efectele adverse ale medicamentelor. Acum, datorit\u0103 progresului \u0219tiin\u021bei \u0219i dezvolt\u0103rii noilor antiepileptice, le putem oferi speran\u021ba unei vie\u021bi mult mai bune, \u00een care \u00ee\u0219i pot controla eficient crizele, evit\u00e2nd cele mai frecvente efecte adverse\u201d, sus\u021bine dr. Vasilios Kimiskidis, vicepre\u0219edintele Greek Chapter of the International League Against Epilepsy (ILAE).<\/p>\n<p>Referitor la problema cost-eficien\u021bei terapiei de genera\u021bia a III-a, pre\u0219edintele International Bureau for Epilepsy (BIE0, prof. univ. dr. Athanasios Kovanis, a punctat c\u0103 \u201etrebuie s\u0103 \u021binem cont \u0219i de calitatea vie\u021bii acestor pacien\u021bi, care este str\u00e2ns legat\u0103 de noile terapii\u201d.<\/p>\n<p><strong>R\u0103spunsul autorit\u0103\u021bilor<\/strong><\/p>\n<p>Pe lista medicamentelor compensate \u0219i gratuite se afl\u0103 14 medicamente pentru tratamentul epilepsiei, a precizat dr. Nicolae Fotin, pre\u0219edintele Agen\u021biei Na\u021bionale a Medicamentului \u0219i a Dispozitivelor Medicale (ANMDM). Recent au fost depuse dou\u0103 noi solicit\u0103ri de evaluare, din care una s-a finalizat cu introducerea unui nou produs. \u201eNoi am promovat o propunere privind obliga\u021bia de drept public prin care \u00eencerc\u0103m s\u0103 ne asigur\u0103m c\u0103 produsele din Rom\u00e2nia sunt accesibile \u00een primul r\u00e2nd pacien\u021bilor\u201d, a explicat dr. Nicolae Fotin.<\/p>\n<p>Este nevoie de efortul \u00eentregii societ\u0103\u0163i pentru a \u00eembun\u0103t\u0103\u021bi managementul bolii \u0219i dificult\u0103\u021bile cu care se confrunt\u0103 pacien\u021bii cu epilepsie, consider\u0103 subsecretarul de stat \u00een Ministerul S\u0103n\u0103t\u0103\u021bii, R\u0103zvan Vulc\u0103nescu: \u201eExist\u0103 un subprogram de epilepsie finan\u0163at de CNAS, exist\u0103 \u015fi programul prin care noi asigur\u0103m finan\u0163area pentru tratamentul copiilor cu epilepsie, deci exist\u0103 un efort sus\u0163inut din partea autorit\u0103\u0163ilor\u201d.<\/p>\n<p>Echitatea \u015fi calitatea vie\u0163ii bolnavilor cu epilepsie pot fi asigurate at\u00e2t prin acces la tratament adecvat, c\u00e2t \u015fi prin eliminarea discrimin\u0103rii \u015fi stigmatiz\u0103rii. Dac\u0103 \u00een prima categorie rolul central revine factorilor de decizie, lupta \u00eempotriva discrimin\u0103rii bolnavilor de epilepsie este responsabilitatea fiec\u0103ruia dintre noi, sus\u021bine conf. univ. dr. Diana Loreta P\u0103un, consilier de stat la Departamentul de S\u0103n\u0103tate Public\u0103 al Administra\u0163iei Preziden\u0163iale.<\/p>\n<p>Pre\u0219edintele Comisiei pentru s\u0103n\u0103tate public\u0103 \u0219i familie din Camera Deputa\u021bilor, conf. univ. dr. Corneliu Florin Buicu, este de p\u0103rere c\u0103 pacientul trebuie s\u0103 vin\u0103 s\u0103 fac\u0103 cele mai bune propuneri. Bine\u00een\u021beles, nu pot lipsi speciali\u015ftii \u0219i fondurile necesare. \u201eCred c\u0103 Ministerul S\u0103n\u0103t\u0103\u021bii \u015fi CNAS trebuie s\u0103 identifice sursele financiare necesare \u015fi, \u00een momentul \u00een care pacientul a intrat \u00een tratament, \u00eempreun\u0103 cu Ministerul Muncii s\u0103 g\u0103seasc\u0103 cea mai bun\u0103 integrare a nevoilor de \u00eengrijire pentru pacien\u0163i\u201d, a explicat acesta.<\/p>\n<p>\u00cen opinia europarlamentarului rom\u00e2n dr. Cristian Bu\u0219oi, epilepsia nu a fost o prioritate a politicilor publice, nici la nivel european, nici \u00een Rom\u00e2nia: \u201eDe cur\u00e2nd, \u00een Parlamentul European s-a constituit un grup de advocacy pentru a vedea \u00een ce m\u0103sur\u0103 putem lupta \u00eempotriva epilepsiei. Este o declara\u0163ie scris\u0103 semnat\u0103 de colegii deputa\u0163i care cer o strategie european\u0103 \u00een ceea ce prive\u015fte epilepsia. Sper\u0103m ca aceast\u0103 declara\u0163ie s\u0103 devin\u0103 un document oficial al Parlamentului European\u201d.<\/p>\n<div>\n<p><strong>Mirabela Via\u0219u<\/strong><\/p>\n<p>Obiective importante din Bucure\u015fti au fost iluminate \u00een mov &#8211; culoarea asociat\u0103 \u00een \u00eentreaga lume cu epilepsia.<\/p>\n<p>Administra\u0163ia Preziden\u0163ial\u0103 a marcat duminic\u0103 seara, \u00eencep\u00e2nd cu ora 20,00, Ziua Interna\u0163ional\u0103 a Epilepsiei, prin iluminarea \u00een culoarea mov a cl\u0103dirii Palatului Cotroceni.<\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Acces limitat la tratament, inclusiv la metode de tratament alternativ, acces restr\u00e2ns la servicii medicale, la infoma\u021bii \u0219i la asisten\u021b\u0103 social\u0103 corespunz\u0103toare. Lipsa speciali\u0219tilor \u00een managementul epilepsiei, discriminarea la locul de munc\u0103 \u0219i \u00een comunitate, dar \u0219i indiferen\u021ba celor din jur. Acestea sunt principalele probleme cu care se confrunt\u0103 pacien\u021bii&#8230; <br \/><span class=\"meta-more\"><a href=\"https:\/\/www.aspe.ro\/index.php\/efort-comun-pentru-imbunatatirea-managementului-epilepsiei-in-romania\/\">Citeste tot articolul &raquo;<\/a><\/span><\/p>\n","protected":false},"author":1,"featured_media":497,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0},"categories":[1],"tags":[],"_links":{"self":[{"href":"https:\/\/www.aspe.ro\/index.php\/wp-json\/wp\/v2\/posts\/493"}],"collection":[{"href":"https:\/\/www.aspe.ro\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.aspe.ro\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.aspe.ro\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.aspe.ro\/index.php\/wp-json\/wp\/v2\/comments?post=493"}],"version-history":[{"count":0,"href":"https:\/\/www.aspe.ro\/index.php\/wp-json\/wp\/v2\/posts\/493\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.aspe.ro\/index.php\/wp-json\/wp\/v2\/media\/497"}],"wp:attachment":[{"href":"https:\/\/www.aspe.ro\/index.php\/wp-json\/wp\/v2\/media?parent=493"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.aspe.ro\/index.php\/wp-json\/wp\/v2\/categories?post=493"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.aspe.ro\/index.php\/wp-json\/wp\/v2\/tags?post=493"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}