2023-04-19 19:05:07
“The Observatory for rare diseases (Omar) welcomes the news of the approval of the Tariffs decree, an act that will help to bring health care increasingly in the direction of greater equity between the Regions, guaranteeing citizens the services and aids of they actually need”. Thus, Ilaria Ciancaleoni Bartoli, director Omar comments on the agreement found in the State-Regions Conference on the Tariffs decree, containing the tariff nomenclature linked to the essential levels of assistance (Lea). A goal expected from 2017 – recalls the ‘Observatory in a note – and the failure to achieve which has been repeatedly cited as a limitation for other important measures.
“We congratulate the Minister of Health, Orazio Schillaci – continues i- for having obtained, in just over 6 months from taking office, this result, which has always been overlooked in the past. In the coming days, together with the patient associations of the Rare Disease Alliance and clinicians, we will carefully analyze the services included in the new price lists, to verify that there are no inaccuracies and to be ready to propose additions to the next update which, we hope, will future constant cadence, as promised”.
The decree repeatedly requested also by the whole world of rare diseases – explains the note Omar – will allow updating the old tariffs, stuck in 1996 for specialist and 1999 for prosthetics and will help reduce regional differences in the provision of services and what it contains. It is also essential, according to Omar, that the specialist nomenclature includes technologically very advanced services, even new ones, and eliminates some that are now totally outdated.
“Now that this huge obstacle has finally been overcome – continues Ciancaleoni Bartoli – there are all the prerequisites for taking two more simple and in fact ready steps, which have also been awaited for too long. In fact, it is now up to the Conference of the Regions to give the go-ahead to the National Plan for Rare Diseases, strongly desired by Undersecretary Marcello Gemmato, but which has been waiting for scheduling for 2 months. The Government, on the other hand, is being asked to take another step, hitherto missed precisely because of the lack of the Tariffs Decree: the updating by decree of the list of pathologies to be sought through newborn screening. New Lea, screening update and National Disease Plan 2are – he concludes – are 3 of the greatest needs for the world of people with rare diseases. We are confident in the commitment and ability shown up to now by the ministry, and in particular by Undersecretary Gemmato, to see them finally satisfied”.
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