2023-09-19 11:10:27
In Italy it affects 10-20 thousand people (27.9% of the population), with an annual incidence of 5.31 cases per 100 thousand inhabitants. It is primary biliary cholangitis (PBC), a chronic autoimmune disease of the liver that accompanies the patient throughout his life, in particular women between 40 and 60 years of age who have to deal with diarrhea, dry mouth up to liver failure (jaundice ) and accumulation of fluid in the abdomen, in more severe cases. And on the rare liver disease, today on the initiative of Senator Ignazio Zullo of the
Objective: to demonstrate the success of best practices in the treatment and management of patients with PBC as well as highlight the value of collaboration, research and innovation in improving patients’ quality of life. In this regard, ‘Primary biliary cholangitis (Pbc)’ was presented. Italian best practices: the story of the protagonists’, a volume that recounts the individual territorial experiences carried out – we read in a note – the methods of creation of the individual models and the impact on the lives of the people who have benefited from them, in order to guarantee on throughout the national territory equity of access to early and adequate care and care and improve the quality of services offered to people with the pathology.
“This volume – began Zullo – brings to light the best practices that must act as a stimulus and commitment so that, throughout the entire territory, patients can benefit from fair treatment. Unlike many other rare diseases, Pbc can be adequately controlled through the therapies available today. Therefore, an early diagnosis appears necessary to allow timely management. To this end, close collaboration between the various specialists is essential – starting with general practitioners – without neglecting the important contribution that can be offered by the relevant patient associations”.
Pbc, like all autoimmune liver diseases – it emerged from the meeting – if not diagnosed and not treated adequately, progress in terms of clinical severity up to the phases of decompensated cirrhosis of the liver. Although there are very sensitive and specific laboratory and diagnostic imaging tests for their diagnosis, autoimmune liver diseases are certainly under-diagnosed in Italy. “Being able to identify the pathology early through positivity to anti-mitochondrial antibodies (AMA) – said Joseph Polimeni, General Director of the Regional Health Coordination Company of the Friuli-Venezia Giulia Region – and at the same time guarantee adequate follow-up up of patients who have positive blood antibody values, would potentially allow us to avoid unfortunate diagnoses and identify targeted and certainly more effective therapies”.
“The objective of the next few months will be to further perfect the Sicily Region PBC Network – assures Vincenza Calvaruso, national secretary of the Italian Association for the Study of the Liver (AISF) – so that it provides a data collection method capable of following the long-term clinical history of the patient and any second-line therapies, also reflecting the change in the therapeutic approach and updating the platform variables whenever something new occurs”. The project – details the note – also provides for the establishment of a ‘Cross’ (Chronic Systemic Illness) clinic for integrated activities relating to patients with chronic inflammatory intestinal diseases (Kids or IBD) often also affected by dermatological and rheumatological pathologies, which therefore allows a combined approach between the different specialist branches, which allows for more effective management of patients suffering from immune-mediated pathologies for integrated and multidisciplinary management.
“The Cross project – highlighted Florenzo Iannone, head of the University Rheumatology Unit of the Aou Policlinico of Bari – has allowed coordination between specialists and the coordination of the path for the patient, guaranteeing the optimal request for tests and, at the same time, the ‘efficient use of resources’.
“Over the last ten years, the share of patients undergoing liver transplantation due to liver failure caused by autoimmune liver diseases has remained stable over time – recalled Pierluigi Toniutto, director of the Hepatology and Liver Transplant Unit of the University of Udine – this means that although effective therapies are available, diagnosis does not occur in a timely manner. In fact, there is a large proportion of patients with late diagnosis: our challenge is to prevent this from happening.”
The data collected “thanks to the multicenter AMA+ project (Anti-mitochondrial antibodies, ed.) – underlined Stefano Brillanti, head of liver and biliary tract diseases at the Aou Senese – reflect a situation of underestimation and inadequate management of an important chronic pathology: the The challenge is that of information, which must be addressed not only to public opinion, but also to non-hepatology specialists (such as endocrinologists, dermatologists, rheumatologists), who very often encounter immune-mediated pathologies”. “The objective of the Pnrr – recalled Pietro Invernizzi, director of the Department of Medicine and Surgery of the University of Milan-Bicocca – is to ensure adequate support and strengthening of the infrastructures necessary to support research and a better quality of clinical management of patients, with specific reference to autoimmune liver diseases, creating a registry that would allow the collection of data and biological materials. Fundamental to the success of the project was the close interaction and profound collaboration with the other professionals involved.”
Finally, Ivan Gardini, president of the EpaC non-profit association: “It is essential for the treatment of Pbc to ensure early management of the patient. Therefore, the need for the creation of a hepatological network within each region appears evident, in order to guarantee that the patient with suspected Pbc is immediately referred to the local reference centre”. This is echoed by Davide Salvioni, president of the Autoimmune Liver Diseases Association – Amaf onlus: “Collaboration with the medical community and other associations is fundamental, a source of support to transform a difficult situation into a resource. Furthermore, it appears essential that patients are fully aware and informed, so that they are actively involved in the treatment process.”
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