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Livelli essenziali di assistenza sanitaria per il paziente affetto da patologia cronica.

Inserito da Brighi.Ercole il Sab, 30/06/2007 - 21:35

Roma, 5 giugno 2007 On. Sen. Ignazio Roberto Marino Presidente della Commissione Igiene e Sanità del Senato della Repubblica Italiana e, p.c. On. Sen. Livia Turco Ministro della Salute Onorevole Presidente, Cittadinanzattiva, in particolare attraverso le reti del Tribunale per i diritti del malato, presente con 350 sedi sul territorio nazionale e più di 19.000 contatti gestiti solo nell’anno 2006, e del Coordinamento nazionale delle associazioni dei malati cronici, composto da 140 associazioni di malati cronici e affetti da patologie rare, esprime condivisione per le misure contenute nel DDL n. 1426 “Norme a sostegno della ricerca e della produzione dei farmaci orfani e della cura delle malattie rare”, da Lei presentato. Da anni ormai, il Tribunale per i diritti del malato e il Coordinamento nazionale delle associazioni dei malati cronici chiedono alle Istituzioni, che siano garantiti, su tutto il territorio nazionale, adeguati livelli essenziali di assistenza sanitaria per i pazienti affetti da patologie rare. Dal nostro punto di vista è necessario che il paziente affetto da patologia rara trovi nel Servizio sanitario nazionale almeno lo stesso grado di assistenza sanitaria di qualsiasi altro paziente affetto da patologia cronica. E’ importante precisare che l’azione di tutela proposta dalla nostra organizzazione in tema di malattie rare si sostanzia anche di attività d’informazione sui centri di riferimento, sulle modalità di accesso ai farmaci, sul riconoscimento delle relative esenzioni, nella stesura e nella diffusione di strumenti di tutela, ed in alcuni casi, qualora ne ricorrano i presupposti, anche di assistenza legale. Inoltre, come indicato anche nella relazione illustrativa dello stesso DDL n. 1426, attualmente le Regioni, nonché le singole ASL, decidono discrezionalmente se garantire gratuitamente l’assistenza farmaceutica per tali patologie. Ciò comporta un’evidente disparità di trattamento, non solo tra i cittadini residente in Regioni diverse, ma anche tra quelli di una stessa Regione appartenenti ad ASL differenti. In tal senso si pone la proposta politica avanzata da Cittadinanzattiva, lo scorso 17 aprile1, alla presenza del Ministro Livia Turco, in merito alla necessità di preservare l’universalità del nostro Servizio sanitario nazionale. 1 Roma 17 aprile 2007, presentazione Rapporto P.I.T. Salute “ Diritti a pezzi? La sanità tra universalità e federalismo” – Cittadinanzattiva – Tribunale per i diritti del malato – www.cittadinanzattiva.it In particolare dall’ultimo Rapporto P.I.T. Salute risulta che la difficoltà di giungere a diagnosi e ottenere i relativi benefici previsti rappresenta il 29% delle segnalazioni relative al tema delle malattie rare, l’impatto economico e sociale della patologia il 19%, le difficoltà di accesso alle cure in misura adeguata alla condizione del paziente il 16%, la mobilità sanitaria il 14%, le difficoltà di accesso alle informazioni il 13%, l’accesso ai farmaci il 5%, le difficoltà di accesso alle cure innovative il 4%. Inoltre, condividiamo la Sua intenzione di aumentare l’attuale fondo nazionale per la non autosufficienza – ANSA 22/05/07 - , nonché proporre, all’interno del DDL n. 1249 “Semplificazione degli adempimenti amministrativi connessi alla tutela della salute”, l’emendamento che consenta di prescrivere farmaci off label anche ai bambini – ANSA 22/05/07. Tale DDL, ed in particolare le norme che prevedono la possibilità di prescrivere farmaci cannabioidi per le cure palliative e la semplificazione del relativo regime di prescrizione, rappresenta per la nostra organizzazione una priorità, poiché garantirebbe il diritto fondamentale di ciascuna persona a non soffrire inutilmente2. Per questa ragione sottolineiamo l’esigenza di concludere nel più breve tempo possibile l’iter parlamentare di approvazione del documento (DDL. n. 1249). I temi ai quali abbiamo fatto riferimento in questa lettera meriterebbero un approfondimento con un incontro che Le chiediamo formalmente, anche alla luce di quanto dichiarato dal Ministro della Salute lo scorso 18 maggio in tema di qualità e sicurezza delle cure. Cogliamo l’occasione inoltre per chiederLe la disponibilità a partecipare in qualità di relatore alla presentazione del VII Rapporto sulle Politiche della Cronicità, promosso dal Coordinamento nazionale delle associazioni dei malati cronici (CnAMC) – Cittadinanzattiva, che si svolgerà a Roma il 21 giugno 2007 dalle ore 9,30 alle ore 13,30, presso la Casa del Cinema (Sala KodaK), in Largo Marcello Mastroianni 1 (villa Borghese). L’evento rappresenta un appuntamento annuale per fare il punto sulle difficoltà che incontrano i pazienti affetti da patologie croniche e rare, nonché per proporre delle soluzioni. RingraziandoLa per l’attenzione e confidando nell’accoglimento delle nostre richieste, Le porgiamo distinti saluti Teresa Petrangolini Segretario Generale Cittadinanzattiva - onlus Simona Sappia Francesca Moccia Responsabile Coordinatore Nazionale Coordinamento nazionale Associazioni Malati Cronici Tribunale per i diritti del malato Cittadinanzattiva Cittadinanzattiva 2 Diritto a non soffrire inutilmente, art. 1, “Carta dei diritti sul dolore”, Cittadinanzattiva – Tribunale per i diritti del malato – www.cittadinanzattiva.it

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Inserito da Brighi.Ercole il Sab, 30/06/2007 - 21:35

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