“The draft of the ‘tariff decree’ that would finally make the application of the new Leas a reality has been standing still for more than a month at the signing of the State-Regions Conference: people with rare and chronic diseases have been waiting for its full implementation for five years, but in the absence of this signature, in compliance with the provisions of Legislative Decree 502/1992, the ministry cannot proceed without the approval from the Regions. And all this is to the detriment of citizens and in particular of the most fragile. We wonder what the Regions are waiting for, although they participated in the drafting of this document, to give the green light. “Thus Ilaria Ciancaleoni Bartoli, director of the Rare Diseases Observatory (Omar), who returns to denounce the stalemate.
“Pending the implementation decrees – explains Ciancaleoni Bartoli – clear disparities have arisen between Regions, due to the different economic conditions: some of them – such as Lombardy, Valle D’Aosta, Veneto, Emilia Romagna and Tuscany – already have made executive, with its own measures and investments, the so-called extra Lea, services included in the 2017 update that were not previously present, with the aim of allowing the necessary prescriptions by general practitioners and pediatricians of free choice and in order to facilitate patients suffering from chronic conditions “.
“Now, after a long work of the two Lea Commissions that have succeeded each other over time – made up of representatives of the Ministries of Health and Economy, the Conference of Regions and Autonomous Provinces and the National Agency for Regional Health Services (Agenas) – a draft of the decree was prepared, the approval of which would guarantee in a single stroke the updating of the rates of the outpatient specialist and the prosthetic sector and therefore the provision of new and long-awaited services “, continues the director of Omar.
“A draft that is therefore the result of a long-shared work between central and local institutions, given that it originated from the proposals formulated over the last ten years by the Regions, by scientific societies and by subjects and bodies operating within the NHS.
“In the end, it is the patients who pay the price for this long delay – explains Francesco Macchia, vice president of the Rare Diseases Observatory – for at least two reasons: they do not obtain the essential levels of assistance to which they would be entitled and they cannot even ask for further steps forward. , for which by now there would be all the conditions, a truly unacceptable stalemate ”.
Basically – reads the note – patients have uneven access to the most up-to-date services on the basis of medical and technological progress contained in the new nomenclator of the outpatient specialist contains. In addition, as long as the new nomenclator is not approved and operational, it will not be possible to make further progress, despite the fact that all the prerequisites are in place. Among the measures that find a block in this lack of implementation of the new Lea – the Observatory recalls – there is the decree to update the neonatal screening panel, stopped in 2016, the inclusion in the list of diseases free of rare and chronic diseases previously not included and also the recognition of the right to medically assisted procreation for some people affected by transmissible genetic diseases.
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