Chronically ill gaps between public and private costs pay from his own pocket the shortcomings of the national health service and daily struggle with bureaucracy to get what ensured at public. This is the photograph of the city suffering from chronic and rare diseases that emerge from the eighth report on the policies of chronicity (
is online to download the document ) "The Cost of Rights", presented today in Rome by the National Coordination of patient Chronic-Active Citizenship, which consists of 140 organizations. Costs: Each month, the chronically ill spend over € 1700, among caregivers, farmaci, protesi.
Secondo gli ultimi dati Istat 2008, a soffrire di almeno una patologia cronica in Italia è il 39,2% dei residenti e il 20,5% dichiara di essere affetto da due o più malattie croniche. Questa percentuale sale notevolmente quando si passa alla fascia anziana della popolazione: l'86,9% degli ultrasettantacinquenni soffre di almeno una malattia cronica e il 68,3% di due o più. Le malattie croniche più diffuse sono nell'ordine: artrosi/artrite (17,9%), ipertensione (15,8%), malattie allergiche (10,6%), osteoporosi (7,3%), bronchite cronica e asma bronchiale (6,4%), diabete (4%). Per quanto riguarda le malattie rare, stime ufficiali parlano di circa 30 milioni di people with rare diseases in the European Union; in Italy have received a formal recognition of 284 rare diseases.
To heal, the chronically ill in Italy claim substantial private costs to make up for what is not guaranteed by a public service and work daily tussle with the bureaucracy to get how much is recognized by law and by the NHS. The average monthly expenditure incurred by the patient and his family is € 1760, led by the costs related to caregivers, which amount to 986 € per month.
In terms of pharmaceutical care, 50% of the Associations of chronically ill patients indicates the lack of access to necessary medicines and irreplaceable for the treatment of the disease, while 33% report regional differences, but also between local health authorities in the same region, for access to medicines, 53% report lack of access to farmacinecessari for the prevention and control of complications, compared with 20% of the associations which declares the existence of differences in access to land. All these difficulties mean that patients, as reported by 43% of the associations, should support private costs for the purchase of drugs for the treatment and / or control of complications of the disease is not guaranteed by the National Health Service. These are the proposals of
Cnamc:
include forms of participation of civic organizations in decision-making. For example: setting up a permanent body at the INPS Consultation consists of representatives of civic organizations that can comment on existing critical and make suggestions for improvement. A similar body could be set up at the AIFA to improve access to medicines, and even organizations should be involved in the monitoring of Lea in the region with plans to return;
provide a channel for priority booking of services aimed at monitoring chronic diseases; Lea
include in the performance needed for the treatment of pain and palliative care for patients with chronic non-cancer;
revise and supplement the list of debilitating chronic diseases and the list of rare diseases;
review Tariff Nomenclature of the prosthesis and ensure quality, innovation and personalization;
ensure access to medicines for C band, innovative, orphans, Pharmaceuticals, food supplements, indispensable and irreplaceable for the care and management of complications of chronic diseases and rare currently borne by the public and simultaneously simplifying the rules for the marketing of drugs and, in particular, those for rare diseases;
to fully implement the Law 80/2006 which exempts certain categories of monitoring visits by the chronically ill to annual verification of the existence of the state of disability and revise / supplement the list of categories of chronically ill patients who receive tale legge.L'annuale edizione del Rapporto sulle politiche della cronicità mette in rilievo le difficoltà di accesso ai servizi socio-sanitari per circa 23 milioni di italiani. Quasi il 57% delle associazioni afferma che il diritto all'accesso è per nulla o poco rispettato, il 40% dice che lo è parzialmente e soltanto il 3% afferma che esso è totalmente rispettato. Le conseguenze? Disastrose sui portafogli e sulla salute: ben l'83% dice che la conseguenza è l'aumento dei costi privati, per l'80% aumentano le complicanze della malattia e ben il 70% denuncia un conseguente peggioramento dello stato di salute.
È soprattutto la burocrazia a far da ostacolo nell'accesso ai servizi socio-sanitari: circa il 77% delle associazioni who participated in the report showed that this is largely critical. In particular, the bureaucracy affects in access to pharmaceuticals, health care (with waiting lists), the issuance and renewal of disability aids and hearing aids.
More than half of the associations (about 57%) had difficulty also in obtaining the socio-economic benefits provided by law, in particular, denounced the lack of access to: attendance allowance (47% of associations), civil recognition of disability and disability (37%), limited the exemption criteria (33%), lack of recognition of exemption code (30%) and signage and road tax exemption (30%).
inadequate and the provision of local health services (nursing homes, home care, long term care, rehabilitation) for which 57% of organizations reported difficulties in access. The same percentage figures have denounced the lack of social welfare (eg carers), in 46% of cases by a lack of tertiary referral center. A true chimera also psychological assistance, with 77% of organizations report they missed. Yet, as we tell the member associations to Cnamc, to handle the psychological stress for these patients and their families is remarkable, but it does not give the NHS almost no response.
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