{"id":697165,"date":"2026-06-10T17:16:03","date_gmt":"2026-06-10T17:16:03","guid":{"rendered":"https:\/\/microscopemedia.com\/?p=697165"},"modified":"2026-06-10T17:16:03","modified_gmt":"2026-06-10T17:16:03","slug":"inimile-noastre-nu-mai-pot-astepta-pacientii-cu-o-boala-cardiaca-rara-cer-compensarea-singurului-tratament-din-lume-care-i-poate-ajuta","status":"publish","type":"post","link":"https:\/\/microscopemedia.com\/?p=697165","title":{"rendered":"\u201eInimile noastre nu mai pot a\u0219tepta\u201d. Pacien\u021bii cu o boal\u0103 cardiac\u0103 rar\u0103 cer compensarea singurului tratament din lume care-i poate ajuta"},"content":{"rendered":"

\u00centr-o scrisoare deschis\u0103 adresat\u0103 ministrului S\u0103n\u0103t\u0103\u021bii, Cseke Attila, asocia\u021bia CardioGen \u2013 care reune\u0219te pacien\u021bi cu boli cardiovasculare genetice \u0219i familiile acestora \u2013 solicit\u0103 includerea mavacamtenului (Camzyos) pe lista medicamentelor compensate.<\/p>\n

Organiza\u021bia<\/a> descrie dificult\u0103\u021bile cu care se confrunt\u0103 persoanele diagnosticate cu aceast\u0103 boal\u0103 cardiac\u0103 \u0219i avertizeaz\u0103 c\u0103 \u00eent\u00e2rzierea deciziei privind compensarea tratamentului poate avea consecin\u021be grave.<\/p>\n

Singurul tratament care ac\u021bioneaz\u0103 asupra bolii<\/h2>\n

\u201eSolicit\u0103m de urgen\u021b\u0103 includerea necondi\u021bionat\u0103 a MAVACAMTEN pe lista de medicamente compensate\u201d, se arat\u0103 \u00een scrisoarea deschis\u0103. Tratamentul, comercializat sub numele Camzyos, este destinat pacien\u021bilor cu cardiomiopatie hipertrofic\u0103 obstructiv\u0103, fiind \u201eprimul \u0219i singurul tratament din lume care ac\u021bioneaz\u0103 direct pe cauza bolii\u201d.<\/p>\n

\u201eV\u0103 scriem \u00een numele a sute de rom\u00e2ni care tr\u0103iesc zilnic cu o boal\u0103 care le fur\u0103 respira\u021bia, puterea \u0219i speran\u021ba: cardiomiopatia hipertrofic\u0103 obstructiv\u0103\u201d, au ransmis reprezentan\u021bii asocia\u021biei.<\/p>\n

Cardiomiopatia hipertrofic\u0103 obstructiv\u0103 este o afec\u021biune genetic\u0103 \u00een care mu\u0219chiul inimii se \u00eengroa\u0219\u0103 anormal, \u00eengreun\u00e2nd circula\u021bia s\u00e2ngelui \u0219i provoc\u00e2nd simptome precum dificult\u0103\u021bi de respira\u021bie, oboseal\u0103 accentuat\u0103, ame\u021beli sau dureri \u00een piept.<\/p>\n

F\u0103r\u0103 acces la un tratament compensat<\/h2>\n

Potrivit asocia\u021biei, pacien\u021bii din Rom\u00e2nia nu au acces \u00een prezent la un tratament compensat care s\u0103 ac\u021bioneze direct asupra cauzei bolii.<\/p>\n

\u201e\u00cen Rom\u00e2nia anului 2026, ace\u0219ti pacien\u021bi nu au la dispozi\u021bie niciun medicament compensat care s\u0103 trateze cauza bolii. Iar tratamentele vechi func\u021bioneaz\u0103 doar par\u021bial\u201d, sus\u021bin reprezentan\u021bii CardioGen.<\/p>\n

<\/p>\n

Alternativ\u0103 la interven\u021bia pe cord deschis<\/h2>\n

Organiza\u021bia i-a explicat ministrului c\u0103 pentru o parte dintre pacien\u021bi, singura op\u021biune r\u0103mas\u0103 este interven\u021bia chirurgical\u0103 pe cord deschis, o procedur\u0103 complex\u0103 care nu este accesibil\u0103 tuturor celor care au nevoie de ea.<\/p>\n

Reprezentan\u021bii pacien\u021bilor sus\u021bin c\u0103 tratamentul a redus semnificativ necesitatea interven\u021biilor chirurgicale \u0219i a \u00eembun\u0103t\u0103\u021bit calitatea vie\u021bii persoanelor care \u00eel primesc: \u201ePentru 8 din 10 pacien\u021bi, nevoia de opera\u021bie pe cord dispare complet \u0219i aproape jum\u0103tate dintre pacien\u021bi devin complet asimptomatici \u0219i revin la o via\u021b\u0103 normal\u0103\u201d.<\/p>\n

Disponibil \u00een prezent doar prin dona\u021bii<\/h2>\n

Prin intermediul unui program temporar de dona\u021bii, peste 205 pacien\u021bi rom\u00e2ni primesc deja acest tratament din aprilie 2025, \u00eens\u0103 acesta se apropie de final.<\/p>\n

\u201eExist\u0103 o speran\u021b\u0103, dar este blocat\u0103 \u00een sertare\u201d, afirm\u0103 autorii scrisorii, care avertizeaz\u0103 c\u0103 \u00eencetarea programului ar putea l\u0103sa f\u0103r\u0103 tratament sute de persoane.<\/p>\n

\u201eCe se va \u00eent\u00e2mpla cu ei atunci? Ce se \u00eent\u00e2mpl\u0103 cu ceilal\u021bi pacien\u021bi care nu au prins un loc? O dona\u021bie nu poate \u00eenlocui dreptul la via\u021b\u0103\u201d, mai transmite organiza\u021bia.<\/p>\n

CardioGen: \u201eAve\u021bi vie\u021bile noastre \u00een m\u00e2ini\u201d<\/h2>\n

CardioGen a anun\u021bat c\u0103 a transmis miercuri o solicitare oficial\u0103 Ministerului S\u0103n\u0103t\u0103\u021bii \u0219i Agen\u021biei Na\u021bionale a Medicamentului pentru includerea necondi\u021bionat\u0103 a mavacamtenului pe lista medicamentelor compensate.<\/p>\n

\u201eFiecare lun\u0103 de \u00eent\u00e2rziere nu este o simpl\u0103 procedur\u0103 administrativ\u0103. Fiecare lun\u0103 \u00eenseamn\u0103 inimi care se deterioreaz\u0103 ireversibil\u201d, se arat\u0103 \u00een apelul adresat autorit\u0103\u021bilor.<\/p>\n

\u201eDomnule Ministru Cseke Attila, ave\u021bi datele, ave\u021bi ghidurile medicale, ave\u021bi vie\u021bile noastre \u00een m\u00e2ini. Tot ce lipse\u0219te este decizia dumneavoastr\u0103\u201d, i-au transmis ministrului S\u0103n\u0103t\u0103\u021bii reprezentan\u021bii asocia\u021biei.<\/p>\n","protected":false},"excerpt":{"rendered":"

\u00centr-o scrisoare deschis\u0103 adresat\u0103 ministrului S\u0103n\u0103t\u0103\u021bii, Cseke Attila, asocia\u021bia CardioGen \u2013 care reune\u0219te pacien\u021bi cu boli cardiovasculare genetice \u0219i familiile acestora \u2013 solicit\u0103 includerea mavacamtenului (Camzyos) pe lista medicamentelor compensate. … Read More<\/a><\/p>\n","protected":false},"author":1,"featured_media":697166,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"Default","format":"standard","meta":[],"categories":[1],"tags":[],"_links":{"self":[{"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/posts\/697165"}],"collection":[{"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=697165"}],"version-history":[{"count":0,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/posts\/697165\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=\/wp\/v2\/media\/697166"}],"wp:attachment":[{"href":"https:\/\/microscopemedia.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=697165"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=697165"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/microscopemedia.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=697165"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}