On average, four years are expected for the diagnosis but there are patients who, years later, do not know the name of the disease. Minister Schillaci: “Approval of the National Plan soon”
«Let’s join forces»: is theappeal to improve the life of those suffering from a rare disease launched by UNIAMO – the Italian Federation of Rare Diseases, with the awareness campaign, presented to the Ministry of Health, which will be active throughout the month of February and will culminate in World Rare Disease Day on 28 February. The goal is to draw the attention of citizens and institutions to the needs of patients suffering from pathologies defined as rare because they affect less than 5 people out of 10,000. The sick are rare but many: in the world over 300 million, in Europe 30 million, in Italy two million, one out of five is a child.
Many initiatives scheduled in the coming days (Who the information). Yes you can show support for rare disease patients wearing the official t-shirt of the day available on site and, on social networks, with the hashtags #RareDiseaseDay, #Uniamoleforze, #RariMaiSoli.
Pending
«On average they expect four years to receive the diagnosis wandering among doctors and hospitals, but after those 4 years there are people who are trying to find an answer to their health problems» recalls Annalisa Scopinaro, president of Uniamo, who urges interventions to reduce waiting times, as well as the approval of the tariff nomenclature and the updating of the essential levels of assistance (Lea). Scopinaro says: «Among other things awaiting recognition 12 rare pathologies and a series of treatments necessary for malati
, the introduction in the panel of the s
extensive newborn screening
of the SMA – Spinal muscular atrophy and other pathologies identified by the working group.
The more I listen
Patient organizations ask for their representatives to be involved e listened to from the very first stages of the decision-making processes: from trials to tenders, from ethics committees to national and regional health planning, as envisaged by the Third Sector Reform and also reaffirm the guidelines recently issued by the Ministry of Health. They then solicit theapproval of the implementing decrees of the consolidated text on rare diseases (Add n.175/2021) which dictates «Provisions for the treatment of rare diseases and for the support of research and the production of orphan drugs» and allocation of funds dedicated to the National Plan for Rare Diseases.
The commitment of the Minister
According to the Minister of Health, Orazio Schillaci, who spoke at the presentation of the campaign, thesettlement – a few days ago – dand the National Committee for Rare Diseases is «a significant step forward in the implementation of the consolidated text on rare diseases: the next steps are the definitive adoption of the National plan for rare diseases and the network reorder document. The documents are ready – specified the Minister -. I am on the agenda of the National Committee which is called upon to express its opinion». Schillaci then underlined the importance of «making every effort for the treatment of rare diseases and for the support for the research and production of orphan drugs».
The requests
Patient organizations are demanding that they be available throughout the national territory treatments and therapies currently provided only by some Regions (not in return plan) in extra-Lea mode, i.e. using own resources to ensure additional services and benefits. And then: according to the associations, one is necessary greater integration between hospital and territory, involving general practitioners and paediatricians of free choice, focusing on how to integrate the organizational changes dictated by DM n. 77/2022 (standard for the development of territorial assistance) with the model for taking care of people with rare diseases. But it’s also crucial the integration of social and health servicesas well as facilitate the patient transition from childhood to adulthood. Among other requests: improve the training and provide for the stabilization of professionals dedicated to rare diseases; «functional» financing – and not “for services” – for the multidisciplinary care of people with rare diseases (already regulated by law and never financed); a more homogeneous recognition of the burden of rare diseases at the level of healthcare services; safeguards specifics in the workplace.
February 1, 2023 (change February 1, 2023 | 3:56 pm)
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