{"id":17519,"date":"2025-07-16T10:48:51","date_gmt":"2025-07-16T08:48:51","guid":{"rendered":"https:\/\/jurmed.ro\/medici\/?p=17519"},"modified":"2025-07-16T10:49:30","modified_gmt":"2025-07-16T08:49:30","slug":"solicitam-acces-la-tratament-oncologic-pentru-pacientii-cu-melanom-ocular","status":"publish","type":"post","link":"https:\/\/jurmed.ro\/medici\/solicitam-acces-la-tratament-oncologic-pentru-pacientii-cu-melanom-ocular\/","title":{"rendered":"Solicitam acces la tratament oncologic pentru pacientii cu melanom ocular"},"content":{"rendered":"<p><strong>Solicitam acces la tratament oncologic pentru pacientii cu melanom ocular<\/strong><\/p>\n<p>Stimate autoritati ale statului roman, stimati reprezentanti ai presei,<\/p>\n<p>Dragi colegi, dragi pacienti,<\/p>\n<h6>Va multumesc ca sunteti alaturi de noi. Va cer doar cateva minute pentru a aduce in atentie o situatie grava si urgenta: <strong>cea a pacientilor din Romania diagnosticati cu melanom ocular metastatic.<\/strong><\/h6>\n<p>Melanomul ocular este o boala rara, cu o incidenta de doar 2\u20137 cazuri la un milion de locuitori. Tocmai aceasta raritate a facut ca pacientii afectati sa fie constant dezavantajati. In Romania nu avem suficienta expertiza specializata, nu avem acces la tratamentele localizate necesare \u2014 precum proton-terapia sau brahiterapia pentru forma localizata \u2014 iar interventiile pentru metastaze hepatice inoperabile nu sunt decontate.<\/p>\n<p>Mai mult decat atat, singurul tratament sistemic aprobat la nivel mondial pentru aceasta forma de cancer \u2014 Tebentafusp (sau Kimmtrak), un medicament orfan \u2014 desi este aprobat de Agentia Europeana a Medicamentului prin procedura centralizata si de ANMDMR inca din anul 2023, nu este inclus nici astazi in lista de medicamente rambursate. In februarie 2025, Guvernul a promis ca va extinde lista medicamentelor compensate, incluzand 22 de molecule noi, printre care si terapia pentru melanomul ocular metastatic. Decizia a primit aviz favorabil din partea Consiliului Economic si Social (CES), insa in practica, Hotararea de Guvern privind introducerea acestora pe lista medicamentelor compensate asteapta inca sa fie semnata. Pe langa pacientii cu melanom ocular, mii de alti pacienti oncologici cu boala metastatica asteapta tratamente care sa le prelungeasca si chiar sa le salveze viata<\/p>\n<h5>In prezent, avem pacienti in programul de donatie oferit de compania producatoare, al caror tratament va fi intrerupt incepand cu 30 iunie 2025, avand in vedere ca statul nu si-a dus la capat responsabilitatea de actualizare a listei.<\/h5>\n<p>Intr-un moment in care spatiul public este plin de discutii despre imbogatiri nejustificate, pensii speciale si coruptie la nivel inalt, este revoltator sa constatam ca nu se mai gasesc bani pentru tratamente oncologice.<\/p>\n<p>Aceasta situatie este inacceptabila si profund lipsita de etica. Autoritatile romane au datoria sa asigure medicamente salvatoare de viata tuturor pacientilor, inclusiv celor in minoritate. Vorbim despre pacienti cu melanom ocular metastatic, care au o speranta de viata mai mica de un an. Este inuman sa-i condamnam doar pentru ca sunt putini.<\/p>\n<p>Prin aceasta declaratie facem un apel public catre:<\/p>\n<ul>\n<li>Ministerul Sanatatii si Ministerul Finantelor, ca avizatori principali ai listei de rambursare,<\/li>\n<li>Casa Nationala de Asigurari de Sanatate, responsabila cu decontarea,<\/li>\n<li>Firmele Immunocore si Medison, ca detinatori de autorizatie si initiatori ai programului de donatie,<\/li>\n<li>Medicii prescriptori si Comisia de Oncologie, care cunosc realitatea de zi cu zi.<\/li>\n<\/ul>\n<p>Va cerem tuturor sa colaborati pentru ca acesti pacienti sa nu ramana fara sansa.<\/p>\n<p>In numele pacientilor cu melanom ocular si al <a href=\"https:\/\/jurmed.ro\/medici\/asociatia-melanom-romania-continua-sa-mobilizeze-actorii-din-sanatate-pentru-imbunatatirea-ingrijirii-pacientilor-cu-melanom\/\">Asociatiei Melanom Romania<\/a>, va multumesc pentru atentie.<\/p>\n<p>Contact:<\/p>\n<p>Violeta Astratinei, Presedinte<\/p>\n<p>violeta.astratinei@melanomromania.org<\/p>\n<p><a href=\"https:\/\/www.melanomromania.org\/\">www.melanomromania.org<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Solicitam acces la tratament oncologic pentru pacientii cu melanom ocular Stimate autoritati ale statului roman, stimati reprezentanti ai presei, Dragi colegi, dragi pacienti, Va multumesc ca sunteti alaturi de noi. [&hellip;]<\/p>\n","protected":false},"author":6,"featured_media":17520,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[1],"tags":[1206,1222,1220,1221,1209],"class_list":["post-17519","post","type-post","status-publish","format-standard","has-post-thumbnail","category-stiri-noutati","tag-asociatia-melanom-romania","tag-kimmtrak","tag-melanom-ocular","tag-tebentafusp","tag-violeta-astratinei"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.0 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Pacientii din Romania diagnosticati cu melanom ocular metastatic.<\/title>\n<meta name=\"description\" content=\"Pacientii care sufera de melanom ocular au o boala rara, cu o incidenta de doar 2\u20137 cazuri la un milion de locuitori\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/jurmed.ro\/medici\/solicitam-acces-la-tratament-oncologic-pentru-pacientii-cu-melanom-ocular\/\" \/>\n<meta property=\"og:locale\" content=\"ro_RO\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Pacientii din Romania diagnosticati cu melanom ocular metastatic.\" \/>\n<meta property=\"og:description\" content=\"Pacientii care sufera de melanom ocular au o boala rara, cu o incidenta de doar 2\u20137 cazuri la un milion de locuitori\" \/>\n<meta property=\"og:url\" content=\"https:\/\/jurmed.ro\/medici\/solicitam-acces-la-tratament-oncologic-pentru-pacientii-cu-melanom-ocular\/\" \/>\n<meta property=\"og:site_name\" content=\"Jurmed - 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