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Lettera comune alle regioni:diritti non regali per i malati rari
myalgic encephalomyelitis chronic fatigue syndrome, fibromyalgia, and sensitivity 'multiple chemical.
The question that we set and ': our diseases are rare? epidemioogici Foreign Studies say no. Worldwide, these diseases are recognized and tabulated as a chronic debilitating diseases and not rare. Is confirmed by the Ministry of Health in response to the parliamentary question of Mr Borghesi, but also concludes by saying that "Italy is via a large number of fibromyalgia patients (2% 8% of the general population), and (the same goes for me / cfs) with different conditions of gravity and, consequently, with different care needs. So there is at present an objective difficulty in identifying correctly, both in terms of prevalence of clinical definition, the forms to be considered for possible inclusion in the chronic-free, according to the criteria laid down by Decree n . 124/1998 regarding the clinical severity, the degree of disability and the burden of the fee arising from the cost of treatment, with consequent failure to make a proper assessment of the impact this would have to be integrated under il profilo economico ed organizzativo."Per la sensibilita' multipla chimica invece ", ha ritenuto che l'indisponibilità di evidenze nella letteratura scientifica internazionale non consenta al momento di considerare la MCS come entità nosologicamente individuabile, e che, comunque, il Servizio Sanitario Nazionale attraverso i Livelli essenziali di assistenza (LEA), sia già in grado di fornire adeguata assistenza a tutti coloro che mostrano intolleranza all'esposizione a sostanze chimiche. Peraltro, la mancanza di conoscenze consolidate dal punto di vista clinico, diagnostico e terapeutico, non permette, allo stato attuale, di prevedere un inserimento della sindrome tra le malattie rare, a causa dei problemi che si porrebbero nel recognize in a timely and proper recipients of the benefits of the law, and in the identification of benefits, including between the LEA, effective and appropriate for treatment, monitoring of the disease and preventing further deterioration "What ?
In a nutshell means that since the disease can appear in different forms and not being able to demonstrate the degree of gravity ': first do not recognize it at all! I wonder then why' not used the same protocols and pathways Foreign diagnostics, where the disease is recognized, to define clinical severity, degree of disability and burden share participation results from the cost of treatment in order to recognize them in an objective manner. Regarding the sensitivity 'multiple chemical, know the evidence of scientific studies used in all countries of the world for the recognition of the disease. Why send a letter to the Regions to seek recognition and allocation of a Regional Code of Exemption for Rare Diseases not yet included in Annex 1 of Decree 279/01? From
document written by the association shows that "A new proposal for a redefinition of the LEA by the current Ministry of Health, has long been blocked by the Treasury, which it considers the funding (Article 81 of the Constitution); currently no assumptions one can see the release of the measure "but about the recognition of disease" for chronic conditions such as the diagnostic possibilities should be established / routine and care centers located throughout the territory " . for Rare Diseases, as well as the basic criterion for the low prevalence (not more than 5 cases per 10,000 people), there are criteria of severity, specificity and non-availability of appropriate treatment and care and strengthened. The situation in regions that do not pay the return of the budget, may include in their Regional Registers for Rare Diseases, illnesses or other than those identified in the National Register, giving them an exemption code to the regional level. "
The content of the joint letter that will be 'sent to the regional governments and regional departments of Health, Ministry of Health, National Institute of Health, the National Rare Diseases; UNIAMO FIMR for Request recognition and award of a Regional Code of Exemption for Rare Diseases not yet available in Annex 1 of Ministerial Decree 279/01 and ' available HERE. How can' join? E 'can join the LETTER TO THE REGIONS whether as individuals, carriers of a rare condition that such groups / associations.-The letter asks that all diseases do not included in 'Annex 1 of Decree 279 / '01, will be incorporated in the regional registers rare. -To join: Enter directly signatures
HERE: writing,,, or name + last name + mail + name of the alert condition. Alternatively, collect the signatures of their own group and supporters (doctors, researchers, friends ...) through a subscription on their website / blog / FB pages, forum. After the collection of signatures, February 28, send the list of signatures collected go109mr@gmail.com This e-mail address is being protected from spam bots. You need JavaScript enabled to view it. . The signatures collected and illnesses reported, will be attached to the joint letter sent simultaneously to the Regions and the other intended recipient. 'S sending a joint letter must be followed, in cascade, by' sending the signal on each of the conditions attached. In short, the format will be inserted and procedures for setting the PERSONAL LETTER reporting of its rare disease to the same recipients. For questions or problems, reply here or write in your dashboard or send mail to 'address:
dirittinonregaliperimalatirari@gmail.com This e-mail address is being protected from spam bots. You need JavaScript enabled to view it. . Form for the collection in paper form : and 'downloadable. Source:
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