MILAN (ITALPRESS) – Presented during an event held at the Pirelli Palace in Milan, a guideline document for the care of patients with Chronic Benign Intestinal Insufficiency and Short Intestine Syndrome in Lombardy. The document, promoted by the Associazione Un Filo per la Vita Onlus, with the nonconditional contribution of Takeda, is the result of the choral work of representatives of the scientific and health worlds reporting to Lombardy’s IICB and SBS reference centers for the disease, and draws on the contribution of clinicians and experts in the disease. It aims to provide an answer to those forced to live with a rare but very debilitating disease: Benign Chronic Intestinal Insufficiency (IICB) is a severe deficiency that involves the intestine not absorbing macronutrients and, if left untreated, leads to death from malnutrition.In Italy there are an estimated 12 cases per million inhabitants, it often happens that the disease also affects children and infants. “The life-saving therapy for IICB,” said Professor Gian Vincenzo Zuccotti, Director of the Department of Pediatrics Vittore Buzzi Hospital during the meeting, “is the administration of parenteral nutrition. Currently in Italy there is a legislative vacuum whereby some forms of IICB do not enjoy any health coverage, not being framed as an exemption or rare disease.” According to epidemiological data, 40 percent of IICB cases result from complications of diseases already recognized by the SSN, while the remainder are related to pathologies, including Short Intestine Syndrome, that have no recognition.The meeting in Milan on Wednesday, March 6, aimed not only to present the policy document addressed to the institutional referents of the Lombardy Region for the creation of a territorial model for taking care of patients, but also to ask that IICB be included in the scope of the regional Essential Levels of Care. “Being included in the list of rare diseases could ensure specific forms of protection for people with IICB, who are high life-threatening patients,” said Sergio Felicioni, president of the Associazione Un Filo per la Vita, Onlus. “People suffering from this pathology do not feed themselves normally,” Margherita Gregori, Secretary General of Un Filo per la Vita Onlus, clarified to Italpress, “but are attached to pumps that, through a wire, take nutrients from bags. This is needed to be able to live and survive.” To date, only Valle D’Aosta and Piedmont have recognized IICB as a rare disease in extra LEA, that is, the possibility for patients to benefit free of charge from health services not included in the essential levels of care. “The heart of the discussion,” said Silvia Scurati, Lombardy Regional Councilor, “is the recognition at the socio-health level, starting with the inclusion of the disease in the LEA, we are aware of this and that is also why a technical table has been activated in the Lombardy Region. What policy can do is to work with stakeholders to create a territorial model of taking care of patients. Surely we need first of all a certain epidemiological approach, so we need data that are consolidated, especially for adult patients. This is the first step in order to then be able to get to the point of creating a registry that also serves to understand the costs necessary to meet the legitimate demands of patient associations, caregivers, and all family members. “The policy document presented saw contributions not only from Professor Gian Vincenzo Zuccotti and Dr. Lorenzo Norsa, Medical Director of Pediatric Gastroenterology at Vittore Buzzi Hospital, but also from other representatives of the health scientific world.
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