(Adnkronos) - “L'obiettivo primario per noi è garantire l'accesso equo e tempestivo ai trattamenti farmacologici e non farmacologici per le persone con malattie rare, oltre a eliminare le disparità che esistono, purtroppo, fra le differenti regioni, mettendole tutte nelle condizioni di poter erogare gli stessi livelli di indagini diagnostiche”. Così Marcello Gemmato, sottosegretario alla Salute, intervendo alla presentazione – al ministero della Salute - della campagna #UNIAMOleforze per la Giornata delle Malattie rare promossa dalla Federazione italiana malattie rare con l'adesione dei ministeri di Salute, Università e Ricerca, Iss, Aifa, Cnr e Fondazione Telethon.
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00:00We are at a turning point in which the government has taken charge of what had been done in
00:09favor of the past governments, by financing with 50 million euros the national plan for
00:17rare diseases, 25 million for 2023 and 25 million for 2024, by approving 80% of the
00:24molecules approved by the EMA in order to treat the so-called orphan pharmacies, which
00:30are provided in assistance, basically free of charge, and therefore in the A range, the
00:37remaining 20% in the contracting phase or in the C range, a deep collaboration with
00:43the region, which at this moment basically establishes what are the centers of excellence
00:50of coordination and research within their regions, in order to form a network, a network
00:57that serves precisely to take care of patients affected by rare diseases.
01:00The goal of this government is to prevent the differences that unfortunately exist in
01:05Italy between the different regions, putting in place the conditions to be able to deliver
01:10all the same levels of diagnostic imaging in this case, because Article 32 of our
01:16Constitution entrusts us with this. First of all, I want to claim with pride that Italy
01:21is the first in Europe to take charge and care of patients affected by rare diseases,
01:27second only to the United States of America, therefore an element of praise for our nation.
01:34Many times we take time to describe the Italian national health system with profound
01:38criticism, we highlight this, which is one of the many peculiarities. Today we are fourth
01:43in the world as a national health system. Having said that, the goal is to prevent
01:48the differences between the different areas of our nation. In some cases, I remember
01:54the pharmacological approach, we still have 80% of the molecules distributed for free,
02:00we are talking about very expensive drugs, there is to homogenize on the territory the
02:07collaboration and stratification between the health and the social, but it is precisely
02:12the object of this plan, a plan that has been in place since 2016 and that we have taken
02:17back and relaunched on time. Fundamental in the management of rare diseases is the early
02:27commissioning. Time is not an independent variable. Before certain pathologies are diagnosed,
02:34the better they are cured, the less they are complained about. Their fundamental role is
02:39carried out by the free choice pediatrics, which are the doctors who see the children first,
02:43so they have the possibility of diagnosing, identifying certain symptoms that can lead
02:49to diseases and then take action in the network that the CONEMAR, the national committee,
02:55has contributed to and is contributing to write at the national level precisely to make
03:00clear and clear pathways of care.