• last year
(Adnkronos) - In Italia colpisce tra le 10 e le 20mila persone, con un’incidenza annuale di 5,31 casi ogni 100mila abitanti. È la colangite biliare primitiva (Pbc), patologia cronica autoimmune del fegato che accompagna il paziente per tutta la vita.



E alla malattia rara del fegato, su iniziativa del senatore Ignazio Zullo della X Commissione (Affari sociali) si è tenuta una conferenza stampa nella sala Nassirya del Senato per sensibilizzare verso una patologia che ha un forte impatto negativo sulla qualità di vita dei pazienti.

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00:00 In Italy, between 10 and 20,000 people are affected by a 5.31 cases per 100,000 inhabitants.
00:13 It is the primitive biliary colangitis, PBC, chronic autoimmune liver pathology,
00:19 that accompanies patients for life, in particular women between 40 and 60 years old,
00:24 who must take care of their mouth with diarrhea and dryness,
00:27 up to liver failure, which is the iterary accumulation of liquid in the abdomen, in the most serious cases.
00:33 On the initiative of Senator Ignazio Zullo of the 10th Social Affairs Commission,
00:38 a press conference was held in the Senate to raise awareness
00:42 on a rare pathology that has a strong negative impact on the quality of life of patients.
00:47 In this regard, the volume "Primitive biliary colangitis, PBC, Italian best practices and the story of the protagonists"
00:55 was raised. For Zullo, institutions can do a lot to improve the care of patients,
01:00 in particular by working on preventive medicine.
01:04 Stay on the side, but adopt those measures that tend to improve the efficiency of the national health service
01:11 and also improve the quality of the expenditure, because very often it is spent inappropriately.
01:17 I will give an example. If this pathology is not treated early, we get to the transplant.
01:25 How much does it cost? All that is achieved by a liver cirrhosis and therefore a transplant,
01:31 when instead of early treatments they can save a person and therefore also save us.
01:36 This is an example of how we should reform and restructure our national health service.
01:45 Vincenza Calvaruso, National Secretary of the Italian Association for Liver Studies,
01:50 stressed the importance of prevention networks.
01:54 Networks, in particular pathological networks, are fundamental tools that over the last few years
01:59 we have learned to implement, which allow all centers that deal with liver diseases,
02:06 from the largest to the smallest, therefore those most distributed in the territory,
02:10 to obtain the same diagnosis and treatment standard of their patients.
02:16 This will allow patients to be managed, treated and followed in the closest place to their home.
02:23 They are fundamental tools because they allow us to standardize the diagnosis and treatment paths,
02:29 they allow us to carry out exams, for example, that the smallest centers in the territory do not have,
02:34 because patients can be referred to larger centers.
02:37 So, from this point of view, they have really changed the approach to the treatment and management of these patients.
02:45 Barbara Marini, General Manager of Advance Pharma Italia,
02:48 confirmed the commitment and investments of the group for the development of increasingly effective treatments.
02:54 Advance Pharma is a company strongly committed not only to bring pharmacological innovation,
03:02 but also to act in the health system, posing as a facilitator of meetings of various health workers.
03:12 This is even more important in rare diseases.
03:15 The primitive pediatric collangitis is a rare disease.
03:18 In Italy, there are estimated between 10,000 and 20,000 people affected by this pathology and they are essentially women.
03:25 So there is an even stronger vocation in bringing together various health workers,
03:32 also with the policy, with the association of patients,
03:35 with the aim of making it easier for these people affected by this pathology,
03:41 the diagnosis of the pathology, the treatment, but also the general well-being.
03:47 For example, through the creation of networks that make it much easier
03:54 to have a diagnosis and a close contact with the patient,
03:58 rather than, as often happens in rare diseases, through trips and trips between regions,
04:07 which naturally make the management of the pathology even more complex from an emotional point of view for the patient.

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