{"id":7333,"date":"2021-03-15T10:05:01","date_gmt":"2021-03-15T10:05:01","guid":{"rendered":"https:\/\/jurmed.ro\/pacienti\/?p=7333"},"modified":"2021-03-15T10:05:01","modified_gmt":"2021-03-15T10:05:01","slug":"pacientii-cu-boli-rare","status":"publish","type":"post","link":"https:\/\/jurmed.ro\/pacienti\/pacientii-cu-boli-rare\/","title":{"rendered":"Provoc\u0103rile accesului la diagnostic \u015fi tratament pentru pacien\u021bii cu boli rare din Rom\u00e2nia"},"content":{"rendered":"

Alian\u0163a Na\u0163ional\u0103 pentru Boli Rare Rom\u00e2nia, \u00eempreun\u0103 cu asocia\u0163ii de pacien\u0163i din sfera bolilor rare, cu sprijinul Roche Rom\u00e2nia, au organizat ast\u0103zi un eveniment destinat cre\u015fterii con\u015ftientiz\u0103rii bolilor rare \u00een r\u00e2ndul publicului larg. \u00cen cadrul acestuia, reprezentan\u0163i ai asocia\u0163iilor de pacien\u0163i, \u00eempreun\u0103 cu medici speciali\u015fti, au discutat despre accesul la diagnostic \u015fi tratament al pacien\u0163ilor care sufer\u0103 de trei boli rare: hemofilie, atrofie muscular\u0103 spinal\u0103 (AMS) \u015fi Tulburarea din spectrul Neuromielitei Optice (TSNMO). La nivel mondial exist\u0103 peste 7.000 de boli rare care afecteaz\u0103 circa 350 de milioane de oameni, dintre care 75% sunt copii.[1]<\/sup><\/strong><\/a> Povara acestor boli este uria\u015f\u0103, \u00een primul r\u00e2nd pentru pacien\u0163i \u015fi apar\u0163in\u0103tori, dar \u015fi pentru \u00eentreaga societate. Cu toate acestea, exist\u0103 tratamente pentru doar 200 dintre aceste boli rare.[2]<\/sup><\/strong><\/a> \u00cen Rom\u00e2nia nu exist\u0103 studii epidemiologice cu privire la prevalen\u0163a acestor boli, \u00eens\u0103 pe baza datelor de la nivel european, se estimeaz\u0103 c\u0103 \u00een \u021bara noastr\u0103 tr\u0103iesc peste 1.000.000 de pacien\u021bi cu boli rare, majoritatea nediagnostica\u021bi. \u201eBolile rare au fost mult timp o Cenu\u015f\u0103reas\u0103 \u00een domeniul medical, din cauza lipsei de cuno\u015ftinte medicale \u015fi \u015ftiin\u0163ifice legate de aceste boli. \u00cen continuare diagnosticarea acestora este foarte dificil\u0103 \u015fi nu exist\u0103 tratamente aprobate pentru majoritatea acestor boli. Cu toate acestea, tratamentele existente \u015fi \u00eengrijirile medicale corespunz\u0103toare pot aduce \u00eembun\u0103t\u0103\u0163iri semnificative ale calit\u0103\u0163ii vie\u0163ii pacien\u0163ilor. Este nevoie \u00eens\u0103 de un efort larg, \u00eempreun\u0103 cu sistemul medical \u015fi speciali\u015ftii \u00een politici de s\u0103n\u0103tate public\u0103, pentru a implementa strategii menite s\u0103 ajute ace\u015fti pacien\u0163i s\u0103 duc\u0103 o via\u0163\u0103 mai bun\u0103. De aceea, tema Zilei Mondiale a Bolilor Rare 2021, ECHITATEA – accesul echitabil la diagnostic, tratament si op\u021biuni de incluziune social\u0103 \u2013 nu poate dec\u00e2t s\u0103 sprijine \u0219i mai mult eforturile pe care le depunem noi, \u00eempreun\u0103, \u00een cadrul comunit\u0103\u021bii bolilor rare<\/em>\u201d, spune Dorica Dan, pre\u015fedinte Alian\u0163a Na\u0163ional\u0103 pentru Boli Rare Rom\u00e2nia<\/strong>.<\/p>\n

Hemofilia \u2013 accesul pacien\u0163ilor la \u00eengrijiri medicale este \u00een continuare dificil.<\/u><\/strong> Hemofilia este o boal\u0103 genetic\u0103 ce afecteaz\u0103 cu prec\u0103dere b\u0103rba\u021bii \u0219i care se manifest\u0103 prin s\u00e2nger\u0103ri necontrolate, cauzate de lipsa unui factor de coagulare \u00een s\u00e2nge. Potrivit datelor[3]<\/sup><\/strong><\/a>, \u00een Rom\u00e2nia sunt diagnostica\u021bi 1.615 pacien\u0163i cu hemofilie, dintre care aproximativ jum\u0103tate se afl\u0103 \u00een tratament[4]<\/sup><\/strong><\/a>.\u00a0 Hemofilia este singura boal\u0103 rar\u0103 inclus\u0103 \u00eentr-un program na\u0163ional dedicat, tratamentul pacien\u021bilor \u00een Rom\u00e2nia fiind sus\u021binut de Casa Na\u021bional\u0103 de Asigur\u0103ri de S\u0103n\u0103tate (CNAS)[5]<\/sup><\/strong><\/a>. De\u015fi finan\u0163area acestui program este considerat\u0103 suficient\u0103 de c\u0103tre speciali\u015fti, managementul acestei boli \u00een Rom\u00e2nia se confrunt\u0103 cu o serie de provoc\u0103ri. \u201eProgramul Na\u0163ional de Tratament al Hemofiliei beneficiaz\u0103 de finan\u0163are suficient\u0103, \u00eens\u0103 accesul pacien\u0163ilor este \u00een continuare sub poten\u0163ial. Lipsa unei abord\u0103ri multidisciplinare, printr-o re\u0163ea de centre comprehensive \u0219i de excelen\u021b\u0103 \u00eengreuneaz\u0103 accesul la tratament \u015fi servicii medicale pentru pacien\u0163ii din zone urbane mici sau rurale. De asemenea, lipsa de informare asupra posibilit\u0103\u0163ilor de tratament ale pacien\u0163ilor duce la o aderen\u0163\u0103 sc\u0103zut\u0103 a tratamentului. O flexibilizare a administr\u0103rii tratamentului prin introducerea unor programe de administrare la domiciliu ar cre\u015fte aderen\u0163a la tratament, ceea ce ar reduce costurile indirecte ale bolii: pensionare timpurie, dizabilitate permanent\u0103, chirurgie ortopedic\u0103 reconstructiv\u0103, zilele de spitalizare, absenteismul \u0219colar, etc<\/em>.\u201d a completat \u015eef Lucr\u0103ri Dr. Ciprian Tomuleasa, medic specialist hematolog, Institutul Oncologic \u201eProf. Dr. Ion Chiricu\u0163\u0103\u00bb, Cluj-Napoca<\/strong>.<\/p>\n

Atrofia Muscular\u0103 Spinal\u0103 (AMS) \u2013 cea mai \u00eent\u0103lnit\u0103 cauz\u0103 genetic\u0103 de deces la sugari<\/u><\/strong>[6]<\/sup><\/u><\/strong><\/a>.<\/u> Atrofia muscular\u0103 spinal\u0103 este o boal\u0103 progresiv\u0103 \u00een care se produce degenerarea \u015fi moartea neuronilor motori (celulelor nervoase motorii) din m\u0103duva spin\u0103rii, rezultatul fiind atrofia treptat\u0103 a mu\u015fchilor. AMS afecteaz\u0103 aproximativ 1 din 10.000 sugari[7]<\/sup><\/strong><\/a> la nivel mondial. Boala este cauzat\u0103 de o muta\u0163ie la nivelul genei SMN1, ceea ce conduce la niveluri sc\u0103zute ale proteinei de supravie\u0163uire a neuronilor motori (SMN). Aceast\u0103 protein\u0103 se reg\u0103se\u015fte \u00een tot corpul \u015fi are un rol vital \u00een func\u0163ionarea sistemului nervos. Nu exist\u0103 date de inciden\u0163\u0103 \u00een Rom\u00e2nia pentru aceast\u0103 boal\u0103, \u00eens\u0103 potrivit speciali\u015ftilor, exist\u0103 aproximativ 180-200 persoane diagnosticate cu AMS \u00een eviden\u0163a medical\u0103, majoritatea fiind copii. \u201ePovara Atrofiei Musculare Spinale este foarte mare pentru pacien\u0163i \u015fi familiile acestora. \u00cen marea majoritate, persoanele cu AMS au nevoie de ajutor pentru activit\u0103\u0163ile obi\u015fnuite zilnice (mers la toalet\u0103, sp\u0103lat, m\u00e2ncat, \u00eembr\u0103cat). Tratamentele pentru aceast\u0103 boal\u0103 implic\u0103, \u00een mod ideal, o abordare multidisciplinar\u0103 (neurolog, kinetoterapeut, pneumolog, pediatru, ortoped, etc) \u015fi sunt costisitoare at\u00e2t pentru familie, c\u00e2t \u015fi pentru societate. Pentru a \u00eembun\u0103t\u0103\u0163i supravie\u0163uirea \u015fi opri progresia bolii este extrem de important s\u0103 \u00eencepem tratamentul c\u00e2t mai rapid\u201d,<\/em> adaug\u0103 \u015eef Lucr\u0103ri Dr. Ioana Minciu, medic primar neurolog pediatru, coordonator program na\u021bional de tratament boli rare \u2013 SMA, Clinica de neurologie pediatric\u0103, Spital clinic de psihiatrie \u201cProf. Dr. Alexandru Obregia\u201d, Bucure\u015fti<\/strong>.<\/p>\n

To\u0163i pacien\u0163ii afecta\u0163i de boli rare au dificult\u0103\u0163i similare \u00een ceea ce prive\u015fte ob\u0163inerea unui diagnostic corect, a informa\u0163iilor relevante, dar \u015fi direc\u0163ionarea c\u0103tre personal medical specializat. De asemenea, persoanele care sufer\u0103 de o boal\u0103 rar\u0103 sunt mai vulnerabile din punct de vedere socio-economic. De aceea este esen\u0163ial s\u0103 existe politici publice care s\u0103 complementeze abordarea medical\u0103 \u015fi s\u0103 ajute la reintegrarea profesional\u0103 \u015fi social\u0103 a pacien\u0163ilor cu boli rare din Rom\u00e2nia.<\/p>\n

\n

[1]<\/sup><\/a>.<\/strong> National Organization for Rare Diseases (NORD), https:\/\/rarediseases.org\/, accesat 1 martie 2021<\/p>\n

[2]<\/sup><\/a>.<\/strong> Roche in Rare Diseases, https:\/\/www.roche.com\/research_and_development\/what_we_are_working_on\/rare_diseases\/roche-in-rare-disease.htm, accesat 1 martie 2021<\/p>\n

[3]<\/sup><\/a>.<\/strong> World Federation of Hemophilia, Annual Global Survey 2019,\u00a0 http:\/\/www1.wfh.org\/publications\/files\/pdf-1806.pdf.<\/p>\n

[4]<\/sup><\/a>.<\/strong> Conform datelor Casei Na\u021bionale de Asigur\u0103ri de S\u0103n\u0103tate, \u00een ultimii 5 ani, num\u0103rul anual minim de pacien\u021bi trata\u021bi a fost de 828, iar num\u0103rul maxim de pacien\u021bi trata\u021bi \u00een cadrului Programului Na\u021bional a fost de 877.<\/p>\n

[5]<\/sup><\/a>.<\/strong> Prin intermediul Programul Na\u021bional de Tratament al Hemofiliei \u0219i Talasemiei (PNHT)<\/p>\n

[6]<\/sup><\/a>.<\/strong> Bowerman et al. Disease Models & Mechanisms, 2017;(10):943-954<\/p>\n

[7]<\/sup><\/a>. <\/strong>Verhaart I, et al. Orphanet J Rare Dis. 2017; 12:124<\/p>\n

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Alian\u0163a Na\u0163ional\u0103 pentru Boli Rare Rom\u00e2nia, \u00eempreun\u0103 cu asocia\u0163ii de pacien\u0163i din sfera bolilor rare, cu sprijinul Roche Rom\u00e2nia, au organizat ast\u0103zi un eveniment destinat cre\u015fterii con\u015ftientiz\u0103rii bolilor rare \u00een […]<\/p>\n","protected":false},"author":4,"featured_media":7334,"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-7333","post","type-post","status-publish","format-standard","has-post-thumbnail","category-stiri-noutati"],"yoast_head":"\nProvoc\u0103rile accesului la diagnostic \u015fi tratament pentru pacien\u021bii cu boli rare din Rom\u00e2nia - Jurmed - Pacienti<\/title>\n<meta name=\"description\" content=\"Bolile rare au fost mult timp o Cenu\u015f\u0103reas\u0103 \u00een domeniul medical, din cauza lipsei de cuno\u015ftinte medicale \u015fi \u015ftiin\u0163ifice legate de aceste boli.\" \/>\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\/pacienti\/pacientii-cu-boli-rare\/\" \/>\n<meta property=\"og:locale\" content=\"ro_RO\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Provoc\u0103rile accesului la diagnostic \u015fi tratament pentru pacien\u021bii cu boli rare din Rom\u00e2nia - 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