{"id":10637,"date":"2026-09-09T13:16:04","date_gmt":"2026-09-09T13:16:04","guid":{"rendered":"https:\/\/jurmed.ro\/pacienti\/?p=10637"},"modified":"2026-09-09T14:03:16","modified_gmt":"2026-09-09T14:03:16","slug":"prevenirea-deceselor-subite-la-tineri-si-la-sportivi","status":"publish","type":"post","link":"https:\/\/jurmed.ro\/pacienti\/prevenirea-deceselor-subite-la-tineri-si-la-sportivi\/","title":{"rendered":"Prevenirea deceselor subite la tineri \u0219i la sportivi"},"content":{"rendered":"<p style=\"text-align: justify;\"><strong>\u00centre diagnostic \u00eent\u00e2rziat \u0219i apelurile pacien\u021bilor \u0219i medicilor <\/strong><strong>pentru rambursarea tratamentului \u00een cardiomiopatia hipertrofic\u0103<\/strong><\/p>\n<ul style=\"text-align: justify;\">\n<li>Una dintre cauzele deceselor subite la tineri \u0219i la sportivi este cardiomiopatia hipertrofic\u0103, o boal\u0103 genetic\u0103 de multe ori subdiagnosticat\u0103.<\/li>\n<li>Boala apare la aproximativ una din 500 de persoane, ceea ce \u00eenseamn\u0103 c\u0103, raportat la popula\u021bia Rom\u00e2niei, num\u0103rul celor afecta\u021bi ar putea fi de ordinul zecilor de mii.<\/li>\n<li>Potrivit informa\u021biilor prezentate \u00een cadrul mesei rotunde \u201dCardiomiopatia hipertrofic\u0103 conteaz\u0103, Rom\u00e2nia ac\u021bioneaz\u0103\u201d, organizat\u0103 de Revista Politici de S\u0103n\u0103tate la Palatul Parlamentului, 215 rom\u00e2ni sunt trata\u021bi cu medicamente inovatoare printr-un program de dona\u021bie, \u00een 7 centre specializate, \u0219i a\u0219teapt\u0103 rambursarea oficial\u0103 pentru a continua tratamentul. \u00cens\u0103 aproximativ 2.100 ar avea, de fapt, nevoie de acest tratament.<\/li>\n<\/ul>\n<p style=\"text-align: justify;\">Luna octombrie 2026 ar putea reprezenta sf\u00e2r\u0219itul tratamentului pentru cel pu\u021bin 215 persoane cu cardiomiopatie hipertrofic\u0103, aflate \u00een prezent pe o terapie inovatoare prin intermediul unei dona\u021bii. Medicii cardiologi \u0219i asocia\u021biile de pacien\u021bi fac un apel la autorit\u0103\u021bile responsabile s\u0103 remedieze aceast\u0103 situa\u021bie prin aprobarea c\u00e2t mai rapid a listei de medicamente compensate \u0219i gratuite care s\u0103 includ\u0103 \u0219i acest tratament.<\/p>\n<p style=\"text-align: justify;\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright size-large wp-image-10638\" src=\"https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2026\/09\/Masa-rotunda-cardiomiopatie.jpg-1030x414.jpeg\" alt=\"\" width=\"696\" height=\"280\" srcset=\"https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2026\/09\/Masa-rotunda-cardiomiopatie.jpg-1030x414.jpeg 1030w, https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2026\/09\/Masa-rotunda-cardiomiopatie.jpg-300x121.jpeg 300w, https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2026\/09\/Masa-rotunda-cardiomiopatie.jpg-768x309.jpeg 768w, https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2026\/09\/Masa-rotunda-cardiomiopatie.jpg-1536x617.jpeg 1536w, https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2026\/09\/Masa-rotunda-cardiomiopatie.jpg-150x60.jpeg 150w, https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2026\/09\/Masa-rotunda-cardiomiopatie.jpg-696x280.jpeg 696w, https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2026\/09\/Masa-rotunda-cardiomiopatie.jpg-1068x429.jpeg 1068w, https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2026\/09\/Masa-rotunda-cardiomiopatie.jpg.jpeg 1742w\" sizes=\"auto, (max-width: 696px) 100vw, 696px\" \/><em>\u201dCardiomiopatia hipertrofic\u0103 este o boal\u0103 genetic\u0103, caracterizat\u0103 prin \u00eengro\u0219area progresiv\u0103 a mu\u0219chiului inimii. Principalele complica\u021bii sunt insuficien\u021ba cardiac\u0103, care poate progresa \u0219i deveni simptomatic\u0103, \u0219i riscul de moarte subit\u0103, prezent at\u00e2t la sportivii de performan\u021b\u0103, c\u00e2t \u0219i la persoanele care nu practic\u0103 sport de performan\u021b\u0103. Pacien\u021bii cu cardiomiopatie hipertrofic\u0103 nu trebuie doar diagnostica\u021bi \u0219i monitoriza\u021bi, ci trebuie s\u0103 aib\u0103 acces efectiv la tratamentele moderne care pot controla simptomele, \u00eencetini progresia bolii \u0219i reduce riscul complica\u021biilor\u201d<\/em>, a afirmat prof. univ. dr. Drago\u0219 Vinereanu, pre\u0219edintele Comisiei de cardiologie din Ministerul S\u0103n\u0103t\u0103\u021bii. Potrivit acestuia, estim\u0103rile arat\u0103 c\u0103 boala apare la aproximativ una din 500 de persoane.<\/p>\n<p style=\"text-align: justify;\">Prof. univ. dr. Ruxandra Jurcu\u021b, coordonatorul Centrului de Expertiz\u0103 pentru Boli Cardiovasculare Genetice Rare, Institutul de Urgen\u0163\u0103 pentru Boli Cardiovasculare \u201eProf. Dr. C. C. Iliescu, a atras aten\u021bia c\u0103 boala \u201dnu este cu adev\u0103rat rar\u0103, pentru c\u0103, prin defini\u021bie, bolile rare au o prevalen\u021b\u0103 mai joas\u0103 de 1 la 2.000 de persoane, \u00een timp ce aici vorbim de 1 la 500 \u0219i poate chiar mai frecvent\u201d.<\/p>\n<p style=\"text-align: justify;\">Ea a mai explicat c\u0103 terapia la care pacien\u021bii au acces prin dona\u021bie, din aprilie 2025, \u00een cele 7 centre de specialitate, permite o ameliorare spectaculoas\u0103 a st\u0103rii bolnavilor, \u00eens\u0103, \u00een prezent, medicii se confrunt\u0103 cu o realitate crunt\u0103.<\/p>\n<p style=\"text-align: justify;\">\u201e<em>Noi, doctorii, ne uit\u0103m \u00een ochii pacien\u021bilor \u0219i le spunem c\u0103 nu mai avem acest medicament. Plata din surse proprii nu este o solu\u021bie realist\u0103 pentru pacien\u021bi. Alternativele r\u0103m\u00e2n continuarea tratamentului pe termen lung, imposibil de sus\u021binut financiar, sau \u00eentreruperea lui. \u00cens\u0103 \u00eentreruperea tratamentului \u00eenseamn\u0103 revenirea simptomelor \u0219i pierderea capacit\u0103\u021bii pacientului de a duce o via\u021b\u0103 normal\u0103\u201d<\/em>.<\/p>\n<p style=\"text-align: justify;\">Medica\u021bia inovatoare este u\u0219or de administrat \u2013 o singur\u0103 pastil\u0103 pe zi \u2013 fiind foarte eficient\u0103 \u0219i sigur\u0103. \u201dDin grupul nostru de pacien\u021bi, la \u0219ase luni de tratament, 83% nu mai prezentau niciun fel de obstruc\u021bie, iar al\u021bi 8% aveau obstruc\u021bie doar la eforturi mari. Asta \u00eenseamn\u0103 o rat\u0103 de r\u0103spuns de aproximativ 90%. Dou\u0103 treimi dintre pacien\u021bi deveniser\u0103 complet asimptomatici \u00een urma tratamentului, iar o treime mai prezentau doar simptome u\u0219oare. Am constatat, de asemenea, o ameliorare a calit\u0103\u021bii vie\u021bii \u0219i a toleran\u021bei la efort.\u00a0 Problema a ap\u0103rut \u00een momentul \u00een care medicamentul nu a mai fost disponibil, iar pacien\u021bii au intrat, pe bun\u0103 dreptate, \u00een panic\u0103. Un articol publicat anul acesta \u00een Journal of the American College of Cardiology, care a urm\u0103rit un grup de pacien\u021bi din China afla\u021bi \u00eentr-o situa\u021bie similar\u0103, arat\u0103 c\u0103, dup\u0103 \u00eentreruperea medica\u021biei, au revenit manifest\u0103rile care existau \u00eenainte de tratament \u2013 simptomele, obstruc\u021bia \u0219i modific\u0103rile structurale ale inimii. Din p\u0103cate, \u00een Rom\u00e2nia, dona\u021bia companiei produc\u0103toare, care a durat mai bine de un an, s-a \u00eencheiat. La Fundeni, pacien\u021bii no\u0219tri mai au tratamentul doar pentru luna septembrie\u201d, a atras aten\u021bia \u0219i prof. univ. \u0111r. Bogdan A. Popescu, \u0219ef sec\u0163ie Cardiologie III, Institutul de Urgen\u0163\u0103 pentru Boli Cardiovasculare \u201eProf. Dr. C. C. Iliescu\u201d.<\/p>\n<p style=\"text-align: justify;\">\u201e<em>Am primit at\u00e2t de multe apeluri de la pacien\u021bi dispera\u021bi. Se sim\u021beau bine, li s-a redat \u0219ansa la o nou\u0103 via\u021b\u0103 \u0219i acum urmeaz\u0103 s\u0103 li se ia. Am primit apeluri de la pacien\u021bi care nu mai puteau s\u0103 aib\u0103 un serviciu, nu mai puteau s\u0103 m\u0103n\u00e2nce, de fapt. Mi-au spus c\u0103 simplul fapt de a m\u00e2nca se resim\u021bea ca un efort fizic foarte mare. Aveau dureri \u00een piept, au \u00eenceput tratamentul \u0219i li s-a dat o nou\u0103 via\u021b\u0103, a\u0219a \u00eenc\u00e2t pot s\u0103 aib\u0103 un loc de munc\u0103, pot s\u0103 mearg\u0103 la sal\u0103\u201d<\/em>, a explicat \u0219i Carmen B\u0103lan, pre\u0219edinte Asocia\u021bia Cardiogen, al c\u0103rei so\u021b a decedat anul trecut din cauza bolii.<\/p>\n<p style=\"text-align: justify;\"><strong>\u00a0<\/strong><strong>Nevoile pacien\u021bilor<\/strong><\/p>\n<p style=\"text-align: justify;\">Pentru pacien\u021bii cu cardiomiopatii, problemele nu se opresc la momentul diagnosticului. Carmen B\u0103lan a vorbit despre dou\u0103 mari nevoi ale pacien\u021bilor: un diagnostic corect \u0219i c\u00e2t mai timpuriu \u0219i sprijinul necesar pentru via\u021ba de dup\u0103 diagnostic.<\/p>\n<p style=\"text-align: justify;\">Datele Asocia\u021biei Cardiogen arat\u0103 c\u0103 doar 12% dintre pacien\u021bi ajung la un diagnostic prin screening clinic familial. \u00cen schimb, 47% sunt diagnostica\u021bi dup\u0103 apari\u021bia simptomelor, 38% afl\u0103 \u00eent\u00e2mpl\u0103tor c\u0103 au boala, iar 3% ajung la diagnostic dup\u0103 un eveniment sever.<\/p>\n<p style=\"text-align: justify;\">Potrivit datelor rezultate din chestionarul Asocia\u021biei, 68% dintre pacien\u021bi spun c\u0103 boala \u00eei \u00eempiedic\u0103 s\u0103-\u0219i ating\u0103 obiectivele personale. Jum\u0103tate dintre ace\u0219tia au limit\u0103ri \u00een ceea ce prive\u0219te activit\u0103\u021bile fizice, iar 18% raporteaz\u0103 consecin\u021be economice, inclusiv situa\u021bii \u00een care nu \u00ee\u0219i mai pot sus\u021bine un loc de munc\u0103.<\/p>\n<p style=\"text-align: justify;\"><strong>R\u0103spunsul autorit\u0103\u021bilor<\/strong><\/p>\n<p style=\"text-align: justify;\">Medicii cardiologi au atras aten\u021bia c\u0103 investiga\u021biile cardiologice precum electrocardiograma \u0219i ecocardiografia pot avea un rol important \u00een identificarea persoanelor care prezint\u0103 modific\u0103ri sugestive.<\/p>\n<p style=\"text-align: justify;\">\u201d<em>Pentru partea de diagnostic, to\u021bi medicii de familie ar trebui s\u0103 aib\u0103 la dispozi\u021bie un ghid privind cardiomiopatia hipertrofic\u0103, iar speciali\u0219tii de medicin\u0103 sportiv\u0103 ar trebui s\u0103 fac\u0103 un curs intensiv privind aceast\u0103 boal\u0103. \u00cen ceea ce prive\u0219te tratamentul, Ministerul S\u0103n\u0103t\u0103\u021bii, prin re\u021bea farmaceutic\u0103, ar trebui s\u0103 intervin\u0103 mult mai activ \u0219i s\u0103 dezvolte o nou\u0103 metodologie pentru \u00eenregistrarea \u0219i respectiv punea pe pia\u021b\u0103 a medicamentelor inovatoare. De asemenea, trebuie s\u0103 avem date concrete \u0219i robuste din punct de vedere al inciden\u021belor acestor afec\u021biuni, astfel \u00eenc\u00e2t \u00een momentul \u00een care ne prezent\u0103m \u00een fa\u021ba unor deciden\u021bi, acele date s\u0103 nu poat\u0103 s\u0103 fie comentate. Din punct de vedere legslativ, Comisia pentru s\u0103n\u0103tate face tot posibilul s\u0103 corecteze problemele din domeniu, pe baza solicit\u0103rilor \u0219i a problemelor semnalate de asocia\u021biile de pacien\u021bi \u0219i de societ\u0103\u021bile profesionale din Rom\u00e2nia<\/em>\u201d, a afirmat prof. univ. dr. Adrian Streinu- Cercel, pre\u0219edinte Comisia pentru s\u0103n\u0103tate, Sematul Rom\u00e2niei.<\/p>\n<p style=\"text-align: justify;\">Pentru includerea unui medicament pe lista medicamentelor compensate \u0219i gratuite, acesta este evaluat de Agen\u021bia Na\u021bional\u0103 a Medicamentului \u0219i a Dispozitivelor Medicale din Rom\u00e2nia (ANMDMR). \u201d\u00cen octombrie 2025, Ordinul 861\/2013 a fost modificat \u0219i actualizat prin introducerea unor criterii de prioritizare. Ulterior acestor modific\u0103ri, pe parcursul lui 2026, Agen\u021bia Na\u021bional\u0103 a Medicamentului a \u00eenaintat Ministerului S\u0103n\u0103t\u0103\u021bii trei proiecte de modificare \u0219i completare a HG 720, \u00een domeniu: \u00een aprilie, \u00een mai \u0219i \u00een iulie. Tratamentul cardiomiopatiei hipertrofice a fost evaluat de Agen\u021bia Na\u021bional\u0103 a Medicamentului \u0219i inclus \u00een list\u0103. Din acest punct, r\u0103m\u00e2ne ca ceilal\u021bi actori implica\u021bi \u00een acest parcurs s\u0103 ia deciziile necesare astfel \u00eenc\u00e2t tratamentul s\u0103 devin\u0103 accesibil pacien\u021bilor\u201d, a explicat prof. univ. dr. Carolina Negrei, membru \u00een Consiliul \u0218tiin\u021bific al ANMDMR.<\/p>\n<p style=\"text-align: justify;\"><em>\u201dOdat\u0103 luat\u0103 aceast\u0103 decizie tehnic\u0103 din partea Agen\u021biei Medicamentului, Casa Na\u021bional\u0103 de Asigur\u0103ri de S\u0103n\u0103tate va implementa, \u00een cel mai scurt timp posibil, decontarea tratamentului. Accesul rapid la terapie este esen\u021bial, mai ales \u00een cazul unui tratament care le ofer\u0103 pacien\u021bilor \u0219ansa la o via\u021b\u0103 normal\u0103, chiar dac\u0103 nu duce la vindecarea bolii. \u00cen plus, tratamentul este considerat sustenabil socioeconomic deoarece pacientul se poate \u00eentoarce la munc\u0103 \u0219i \u00ee\u0219i poate desf\u0103\u0219ura o activitate normal\u0103, f\u0103r\u0103 perioade prelungite de concediu medical \u0219i f\u0103r\u0103 a avea nevoie de spitaliz\u0103ri \u00eendelungate<\/em>\u201d, a completat \u0219i Larisa Mezinu- B\u0103lan, vicepre\u0219edinte Casa Na\u021bional\u0103 de Asigur\u0103ri de S\u0103n\u0103tate (CNAS).<\/p>\n<p style=\"text-align: justify;\">\n","protected":false},"excerpt":{"rendered":"<p>\u00centre diagnostic \u00eent\u00e2rziat \u0219i apelurile pacien\u021bilor \u0219i medicilor pentru rambursarea tratamentului \u00een cardiomiopatia hipertrofic\u0103 Una dintre cauzele deceselor subite la tineri \u0219i la sportivi este cardiomiopatia hipertrofic\u0103, o boal\u0103 genetic\u0103 [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":10640,"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":[],"class_list":["post-10637","post","type-post","status-publish","format-standard","has-post-thumbnail","category-stiri-noutati"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.0 - 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