{"id":9602,"date":"2016-07-27T00:55:37","date_gmt":"2016-07-26T22:55:37","guid":{"rendered":"http:\/\/sdk.mk\/\/?p=9602"},"modified":"2016-08-09T15:07:22","modified_gmt":"2016-08-09T13:07:22","slug":"qeveria-kursen-duke-diskriminuar-femije-te-semure-rende","status":"publish","type":"post","link":"https:\/\/sdk.mk\/index.php\/ngrije-zerin-per-avokatin-e-popullit\/qeveria-kursen-duke-diskriminuar-femije-te-semure-rende\/","title":{"rendered":"QEVERIA KURSEN DUKE DISKRIMINUAR F\u00cbMIJ\u00cb T\u00cb S\u00cbMUR\u00cb R\u00cbND\u00cb"},"content":{"rendered":"<div class=\"f52428582a4b906b2d2e2a7d733c7d27\" data-index=\"7\" style=\"float: none; margin:10px 0 10px 0; text-align:center;\">\n<!-- MSP Ads Asynchronous JS Tag - Generated with Revive Adserver v5.4.1 -->\r\n<ins data-revive-zoneid=\"167\" data-revive-id=\"060fdb01f6430ec164d3519234aa4967\"><\/ins>\r\n<script async src=\"\/\/panel.ads.com.mk\/www\/delivery\/asyncjs.php\"><\/script>\n<\/div>\n<p>M\u00eb 5 janar t\u00eb k\u00ebtij viti, Qeveria solli Programin p\u00ebr mjekimin e s\u00ebmundjeve t\u00eb rralla n\u00eb Republik\u00ebn e Maqedonis\u00eb p\u00ebr vitin 2016. P\u00ebr k\u00ebt\u00eb q\u00ebllim, ka siguruar mjete financiare prej 203 milion denar\u00ebsh. Mir\u00ebpo, nga programi me nj\u00eb fjali i ka hequr f\u00ebmij\u00ebt e s\u00ebmur\u00eb nga fibroza cistike:<\/p>\n<p>\u201cN\u00eb Regjistrin e pacient\u00ebve me s\u00ebmundje t\u00eb rralla listohen vet\u00ebm s\u00ebmundjet t\u00eb cilat prekin nj\u00eb n\u00eb 2.000 persona, por q\u00eb nuk tejkalojn\u00eb 20 t\u00eb s\u00ebmur\u00eb n\u00eb nivel t\u00eb Republik\u00ebs s\u00eb Maqedonis\u00eb.\u201c<\/p>\n<p>Pasi \u00ebsht\u00eb vendosur kufiri prej 20 t\u00eb s\u00ebmur\u00eb n\u00eb gjith\u00eb territorin e shtetit, automatikisht k\u00ebto f\u00ebmij\u00eb p\u00ebrjashtohen nga programi p\u00ebr mjekim dhe terapi falas. Numri i t\u00eb s\u00ebmur\u00ebve nga fibroza cistike n\u00eb Maqedoni \u00ebsht\u00eb prej 100 deri 150.<\/p>\n<p>\u201cMos t\u00eb ekzistonte kushti q\u00eb numri t\u00eb mos kaloj\u00eb 20 t\u00eb s\u00ebmur\u00eb n\u00eb vit, edhe f\u00ebmij\u00ebt tan\u00eb do t\u00eb futeshin n\u00eb Program, por Qeveria me q\u00ebllim i diskriminon, n\u00eb m\u00ebnyr\u00eb t\u00eb paskrupullt i p\u00ebrjashton ata nga t\u00eb gjall\u00ebt, q\u00eb t\u00eb kursej\u00eb\u201d, thon\u00eb prind\u00ebrit e revoltuar.<\/p>\n<p><strong>MINISTRIT\u00cb E INJOROJN\u00cb AVOKATIN E POPULLIT <\/strong><\/p>\n<p>Avokati i Popullit i Republik\u00ebs s\u00eb Maqedonis\u00eb, Ixhet Memeti, nga parashtresa q\u00eb mori nga prindi i nj\u00eb f\u00ebmije t\u00eb s\u00ebmur\u00eb nga fibroza cistike, t\u00eb cilit q\u00eb vjet i \u00ebsht\u00eb hequr ndihma e shtetit prej 4.300 denarve n\u00eb muaj, muajin e kaluar ngriti iniciativ\u00eb para institucioneve kompetente p\u00ebr ndryshimin e Rregullores p\u00ebr vler\u00ebsim t\u00eb nevojave specifike t\u00eb personave me pengesa n\u00eb zhvillimin fizik dhe psikik.<\/p>\n<p>Mir\u00ebpo, Ombudsmani tashm\u00eb nj\u00eb muaj nuk ka marr\u00eb p\u00ebrgjigje p\u00ebr iniciativ\u00ebn p\u00ebr ndihm\u00eb p\u00ebr t\u00eb s\u00ebmurit nga fibroza cistike, t\u00eb cil\u00ebn ia ka d\u00ebrguar ministrit p\u00ebr pun\u00eb sociale, Dime Spasov, ministrit t\u00eb sh\u00ebndet\u00ebsis\u00eb dhe z\u00ebvend\u00ebs kryeministrit, Nikolla Todorov dhe ministrit p\u00ebr arsim dhe shkenc\u00eb, Pishtar Lutfiu si dhe Fondit t\u00eb sh\u00ebndet\u00ebsis\u00eb.<\/p>\n<p><strong>PRIND\u00cbRIT E F\u00cbMIJ\u00cbVE ME FIBROZ\u00cb CISTIKE HUMB\u00cbN DHE ATO PAK T\u00cb DREJTA Q\u00cb KISHIN<\/strong><\/p>\n<p>Ajo q\u00eb krijon habi \u00ebsht\u00eb q\u00eb askund nuk gjendet informacion zyrtar p\u00ebr numrin e t\u00eb s\u00ebmur\u00ebve nga fibroza cistike n\u00eb Maqedoni, dhe p\u00ebrse, p\u00ebr k\u00ebt\u00eb s\u00ebmundje q\u00eb rrezikon jet\u00ebn, paraqitet q\u00eb n\u00eb lindje, \u00a0\u00ebsht\u00eb trash\u00ebguese, multisistemike dhe e cila kap edhe shum\u00eb organe t\u00eb brendshme, nuk ka regjist\u00ebr zyrtar?<\/p>\n<p>\u201cZyrtarisht, ekziston nj\u00eb Departament p\u00ebr fibroz\u00eb cistike, nd\u00ebrsa akoma nuk ka informacione t\u00eb publikuara p\u00ebr l\u00ebvizjen demografike t\u00eb pacient\u00ebve gjat\u00eb viteve. Sa t\u00eb s\u00ebmur\u00eb lindin \u00e7do vit, sa \u00ebsht\u00eb p\u00ebrqindja e t\u00eb mbijetuarve?\u201d, pyet Snezhana Boj\u00e7in, themeluese dhe kryetare e Shoqat\u00ebs p\u00ebr fibroz\u00eb cistike dhe n\u00ebna e nj\u00eb f\u00ebmije me k\u00ebt\u00eb s\u00ebmundje.<\/p>\n<p>Problemi i dyte i madh \u00ebsht\u00eb Regjistri p\u00ebr s\u00ebmundje t\u00eb rralla.<\/p>\n<p>\u201c Nuk ka regjist\u00ebr t\u00eb publikuar t\u00eb s\u00ebmundjeve t\u00eb rralla. A kan\u00eb hyr\u00eb n\u00eb regjist\u00ebr t\u00eb s\u00ebmur\u00ebt nga fibroza cistike, sa jan\u00eb ata? \u00c7far\u00eb ila\u00e7esh jan\u00eb futur n\u00eb regjist\u00ebr, duam t\u00eb dim\u00eb n\u00ebse ne jemi n\u00eb at\u00eb regjist\u00ebr. Shteti i shmanget k\u00ebsaj teme\u201d, thot\u00eb Boj\u00e7in.<\/p>\n<p>Mir\u00ebpo, sado q\u00eb Qeveria t\u2019i shmanget k\u00ebsaj teme, mbetet informacioni se n\u00eb Maqedoni, jet\u00ebgjat\u00ebsia mesatare nga lindja e t\u00eb s\u00ebmur\u00ebve nga fibroza cistike \u00ebsht\u00eb vet\u00ebm 12 vjet, nd\u00ebrsa n\u00eb nivel evropian, \u00ebsht\u00eb 30. Nga ky fakt, nuk mund t\u00eb ik\u00eb.<\/p>\n<p>Informacioni i fundit zyrtar i Shoqat\u00ebs \u00ebsht\u00eb se n\u00eb vitin 2014, n\u00eb Maqedoni ka pasur 124 pacient\u00eb me fibroz\u00eb cistike. Koha mesatare e mbijetes\u00ebs (nga lindja e f\u00ebmij\u00ebs me k\u00ebt\u00eb diagnoz\u00eb), at\u00eb vit ka qen\u00eb 13 vjet. Sipas informacioneve t\u00eb fundit jozyrtare, vjet ka pasur 101 pacient\u00eb me k\u00ebt\u00eb diagnoz\u00eb. N\u00ebse Ministria e Sh\u00ebndet\u00ebsis\u00eb thot\u00eb se n\u00eb vit lindin 7 deri 14 foshnje me fibroz\u00eb cistike, Boj\u00e7ini pyet: \u201cKu jan\u00eb pacient\u00ebt?\u201d<\/p>\n<p>Si prind\u00ebr t\u00eb f\u00ebmij\u00ebve me s\u00ebmundje t\u00eb rrall\u00eb, i humb\u00ebm edhe t\u00eb drejtat e pakta q\u00eb kishim p\u00ebr ta, thot\u00eb ajo. N\u00eb Ministrin\u00eb e Sh\u00ebndet\u00ebsis\u00eb, paska nj\u00eb klauzol\u00eb me \u00a0nj\u00eb fjali t\u00eb vetme q\u00eb kategorizon nj\u00eb f\u00ebmij\u00eb, si f\u00ebmij\u00eb me nevoja t\u00eb ve\u00e7anta, dhe ajo thot\u00eb: \u201c&#8230;dhe persona t\u00eb tjer\u00eb me s\u00ebmundjet m\u00eb t\u00eb r\u00ebnda kronike..\u201d, dhe fibroza cistike sigurisht q\u00eb \u00ebsht\u00eb e till\u00eb, thot\u00eb Boj\u00e7in. P\u00ebr arsye se k\u00ebta pacient\u00eb kan\u00eb s\u00ebmundje t\u00eb rrall\u00eb kronike progresive, kan\u00eb t\u00eb drejt\u00ebn e nj\u00eb shtese t\u00eb ve\u00e7ant\u00eb, e fal\u00eb saj, lirohen edhe nga pagesa e participimit prej 20% si p\u00ebr f\u00ebmij\u00eb me nevoja t\u00eb ve\u00e7anta. Mir\u00ebpo, shteti e fshiu at\u00eb fjali, edhe pse kompetent\u00ebt ishin paralajm\u00ebruar nga Shoqata se me fshirjen do t\u00eb shkurtohen t\u00eb drejtat dhe do t\u00eb p\u00ebrkeq\u00ebsohet trajtimi i s\u00ebmundjes s\u00eb r\u00ebnd\u00eb.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>EDHE FONDI I SH\u00cbNDET\u00cbSIS\u00cb I SHKURTOI T\u00cb ARDHURAT P\u00cbR PACIENT\u00cbT ME FIBROZ\u00cb CISTIKE <\/strong><\/p>\n<p>\u201cE drejta tjet\u00ebr q\u00eb na \u00ebsht\u00eb hequr, \u00ebsht\u00eb e drejta p\u00ebr kompensim t\u00eb mjeteve p\u00ebr t\u00eb pajisjet p\u00ebr terapi fizikale dhe inhalacion. Kjo daton q\u00eb prej kat\u00ebr vjet\u00ebsh. E drejta e tret\u00eb p\u00ebr t\u00eb cil\u00ebn luftuam dhe e fituam, ishte q\u00eb nj\u00eb nga ila\u00e7et e shumta, \u201cursofallk\u201d (ila\u00e7 p\u00ebr s\u00ebmundje t\u00eb m\u00ebl\u00e7is\u00eb), t\u00eb jet\u00eb falas p\u00ebr t\u00eb gjith\u00eb pacient\u00ebt. Tani, Fondi i Sh\u00ebndet\u00ebsi, vendosi q\u00eb ai t\u00eb jet\u00eb falas vet\u00ebm p\u00ebr pacient\u00ebt deri 16 vjet, por realisht, f\u00ebmij\u00ebve deri n\u00eb at\u00eb mosh\u00eb as q\u00eb u nevojitet, sepse kjo s\u00ebmundje e m\u00ebl\u00e7is\u00eb ndodh m\u00eb von\u00eb\u201d, k\u00ebshtu e p\u00ebrshkruan kryetarja e Shoqat\u00ebs se si shteti pa m\u00ebshir\u00eb i p\u00ebrjashton k\u00ebta f\u00ebmij\u00eb me k\u00ebt\u00eb s\u00ebmundje t\u00eb r\u00ebnd\u00eb.<\/p>\n<p>Sllovenia, Kroacia, Turqia dhe Greqia kan\u00eb paraqitur mbi 80 formula ila\u00e7esh p\u00ebr terapi simptomatologjike, t\u00eb cilat jan\u00eb falas dhe rregullisht t\u00eb qasshme p\u00ebr t\u00eb s\u00ebmur\u00ebt nga fibroza cistike. N\u00eb Maqedoni, thot\u00eb nj\u00eb n\u00ebn\u00eb e f\u00ebmij\u00ebs me k\u00ebt\u00eb s\u00ebmundje, vet\u00ebm gjysma e tyre jan\u00eb falas, por shumica e ila\u00e7eve nuk mund t\u00eb gjenden. Shpesh her\u00eb, n\u00eb momentin q\u00eb pacienti ka nevoj\u00eb p\u00ebr to, ato nuk gjenden, dhe n\u00eb at\u00eb rast jepet nj\u00eb z\u00ebvend\u00ebsim, improvizojn\u00eb. K\u00ebtu kemi fjal\u00ebn p\u00ebr terapin\u00eb intravenoze, kurse pacient\u00ebt duhet q\u00eb t\u00eb pakt\u00ebn dy jav\u00eb, t\u00eb q\u00ebndrojn\u00eb n\u00eb spital dhe ta marrin at\u00eb terapi intravenoze.<\/p>\n<p>Jozyrtarisht, familjet e pacient\u00ebve, vet\u00eb i blejn\u00eb ila\u00e7et, sepse Klinika shpesh her\u00eb nuk i ka.<\/p>\n<p><strong>\u00cbSHTE HAPUR QEND\u00cbR E RE P\u00cbR FIBROZ\u00cb, ND\u00cbRSA HISTORIA E S\u00cbMUNDJEVE MBETI N\u00cb KLINIK\u00cbN E F\u00cbMIJ\u00cbVE <\/strong><\/p>\n<p>N\u00eb list\u00ebn e gj\u00ebrave t\u00eb palogjikshme dhe diskriminimit nga ana e Qeveris\u00eb drejt k\u00ebtyre qytetar\u00ebve, Boja\u00e7in thekson edhe dy:<\/p>\n<p>\u201cN\u00eb fillim t\u00eb k\u00ebtij viti, u promovua Qendra p\u00ebr fibroz\u00eb cistike n\u00eb spitalin n\u00eb Kozle, Megjithat\u00eb, historit\u00eb e pacient\u00ebve nuk jan\u00eb transferuar n\u00eb Qendr\u00ebn e re. Ato jan\u00eb akoma n\u00eb Klinik\u00ebn e f\u00ebmij\u00ebve. P\u00ebrse nuk i transferojn\u00eb historit\u00eb e s\u00ebmundjes t\u00eb pacient\u00ebve? Si do t\u2019i mjekojn\u00eb k\u00ebta f\u00ebmij\u00eb mjek\u00ebt e Kozles? Prind\u00ebrit marrin vet\u00eb rrezikun p\u00ebr t\u2019i \u00e7uar f\u00ebmij\u00ebt n\u00eb spital, pa histori p\u00ebr s\u00ebmundjen. Mjek\u00ebt i pranojn\u00eb, por kjo \u00ebsht\u00eb nj\u00eb qasje shum\u00eb joserioze\u201d, thot\u00eb ajo.<\/p>\n<p>Boja\u00e7in flet edhe p\u00ebr v\u00ebshtir\u00ebsit\u00eb q\u00eb i kan\u00eb prind\u00ebrit n\u00eb lidhje me terapin\u00eb e inhalacionit, pas s\u00eb cil\u00ebs kthehen n\u00eb sht\u00ebpi me ila\u00e7 t\u00eb gatuar, n\u00eb vend t\u00eb nj\u00eb ila\u00e7i cil\u00ebsor.<\/p>\n<p>\u201cNj\u00eb pjes\u00eb e terapis\u00eb s\u00eb inhalacionit p\u00ebr t\u00eb s\u00ebmur\u00ebt nga fibroza cistike, n\u00eb shtetet evropiane, po edhe n\u00eb ato t\u00eb Ballkanit, merret n\u00eb farmaci. Vet\u00ebm p\u00ebr k\u00ebta t\u00eb s\u00ebmur\u00eb t\u00eb Maqedonis\u00eb, ila\u00e7et d\u00ebrgohen n\u00eb spital, dhe pacient\u00ebt, \u00e7do muaj, t\u00eb shp\u00ebrndar\u00eb n\u00ebp\u00ebr gjith\u00eb Maqedonin\u00eb, deri n\u00eb fshatrat m\u00eb t\u00eb paqassh\u00ebm, duhet t\u00eb vijn\u00eb t\u2019i marrin n\u00eb Shkup dhe t\u2019i mbajn\u00eb me vete gjith\u00eb dit\u00ebn duke udh\u00ebtuar me autobus\u00eb deri n\u00eb sht\u00ebpi. Nj\u00eb pjes\u00eb e ila\u00e7eve jan\u00eb termolabile. Si\u00e7 jan\u00eb vaksinat. Humbasin cil\u00ebsin\u00eb nga i nxehti\u201d, thot\u00eb Boja\u00e7in.<\/p>\n<p>Tani, pasi terapia merret nga Qendra p\u00ebr fibroz\u00eb cistike n\u00eb Kozle, ajo sigurohet me rregull. Mir\u00ebpo, procesi i marrjes \u00ebsht\u00eb i nd\u00ebrlikuar. Prind\u00ebrit, \u00a0fillimisht shkojn\u00eb n\u00eb Klinik\u00ebn e f\u00ebmij\u00ebve, tek historit\u00eb e s\u00ebmundjes, dhe pastaj, me v\u00ebrtetim, shkojn\u00eb n\u00eb Kozle q\u00eb ta marrin terapin\u00eb. Prind\u00ebrit i mbajn\u00eb zvarr\u00eb k\u00ebto ila\u00e7e gjat\u00eb gjith\u00eb dit\u00ebs, n\u00eb 40 grad\u00eb celsius, nd\u00ebrsa udh\u00ebzimi thot\u00eb se duhet t\u00eb ruhen n\u00eb temperatur\u00eb jo m\u00eb t\u00eb lart\u00eb se 4 grad\u00eb, thekson Boja\u00e7in.<\/p>\n<p>P\u00ebr gjith\u00eb k\u00ebto arsye dhe p\u00ebr diskriminimin e papar\u00eb q\u00eb shteti e b\u00ebn\u00eb vite me radh\u00eb ndaj t\u00eb s\u00ebmur\u00ebve nga fibroza cistike, n\u00eb Maqedoni, mesatarisht, k\u00ebta pacient\u00eb jetojn\u00eb vet\u00ebm 12 vjet. Shum\u00eb foshnje t\u00eb lindura me k\u00ebt\u00eb diagnoz\u00eb humbasin betej\u00ebn q\u00eb n\u00eb fillim. Sa p\u00ebr \u00a0krahasim, n\u00eb Franc\u00eb pritet q\u00eb s\u00eb shpejti, jet\u00ebgjat\u00ebsia mesatare e personave me me k\u00ebt\u00eb s\u00ebmundje t\u00eb arrij\u00eb 50 vjet, sepse mjek\u00ebsia mund\u00ebson mjekim n\u00ebp\u00ebrmjet qelizave t\u00eb t\u00eb s\u00ebmur\u00ebve.<\/p>\n<p>Nd\u00ebrsa te ne,\u00a0 Avokati i Popullit do nis\u00eb luft\u00ebn q\u00eb ila\u00e7et, vitaminat dhe suplementet energjike, si dhe p\u00ebr pajisjet dhe terapit\u00eb fizikale dhe inhalacion p\u00ebr pacient\u00ebt me fibroz\u00eb cistike, t\u00eb p\u00ebrfshihen n\u00eb list\u00ebn pozitive t\u00eb Fondit t\u00eb Sh\u00ebndet\u00ebsis\u00eb, gj\u00eb \u00a0p\u00ebr t\u00eb cil\u00ebn, m\u00eb 22 qershor, i\u00a0 ka d\u00ebrguar let\u00ebr Fondit.<\/p>\n<p>P\u00ebrgjigje nuk ka akoma, as prej tyre.<\/p>\n<p><strong><em>P\u00ebrktheu: Fjolla Zllatku<\/em><\/strong><\/p>\n\n<div style=\"font-size: 0px; height: 0px; line-height: 0px; margin: 0; padding: 0; clear: both;\"><\/div>","protected":false},"excerpt":{"rendered":"<p>M\u00eb 5 janar t\u00eb k\u00ebtij viti, Qeveria solli Programin p\u00ebr mjekimin e s\u00ebmundjeve t\u00eb rralla n\u00eb Republik\u00ebn e Maqedonis\u00eb p\u00ebr [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":9478,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_mo_disable_npp":"","inline_featured_image":false},"categories":[3083],"tags":[],"imageURL":"https:\/\/sdk.mk\/wp-content\/uploads\/2016\/07\/retki-bolesti-odluka-650x545.jpg","thumbURL":"https:\/\/sdk.mk\/wp-content\/uploads\/2016\/07\/retki-bolesti-odluka-250x209.jpg","categoryNames":["Ngrije z\u00ebrin p\u00ebr Avokatin e Popullit"],"feature_caption":"","subtitle":"a:3:{s:16:\"td_post_template\";s:23:\"single_template_british\";s:11:\"td_subtitle\";s:273:\"N\u00ebMaqedoni,jet\u00ebgjat\u00ebsiamesatareet\u00ebs\u00ebmur\u00ebvengalindja\u00a0mefibroz\u00ebcistike\u00ebsht\u00ebvet\u00ebm12vjet,kursen\u00ebnivelevropian,\u00ebsht\u00eb30.Qeveria,ngajanariik\u00ebtijviti,fshiungaregjistriipacient\u00ebvemes\u00ebmundjet\u00ebrrallaf\u00ebmij\u00ebtmefibroz\u00ebcistike.\";s:9:\"td_source\";s:45:\"\u0421\u043a\u043e\u043f\u0458\u0435,(\u0421\u0410\u041a\u0410\u041c\u0414\u0410\u041a\u0410\u0416\u0410\u041c.\u041c\u041a)","views":"3472","source":"","yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v15.0 - 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