Chronic intestinal insufficiency, 800 patients (300 children) “invisible” – breaking latest news

Tied to a floss for artificial feedingwith the home parenteral nutrition, real life-saving therapy. the condition in which they live beyond 800 Italians, including 150 childrensuffering from IICB, Ibenign chronic intestinal insufficiency (indicates the absence of malignant tumor). The pathology appears when the intestine is unable to perform its primary function, that is to nourish the organism. Although included in the European list
Orphanet of rare diseases, at the national level not recognized by the National Health Service. To raise awareness of public opinion and institutions on this rare pathology, on the occasion of the national day dedicated to chronic benign intestinal insufficiency, on March 1, a conference was held in the Chamber of Deputies entitled Chronic benign intestinal insufficiency and short bowel syndrome: how to improve the social care pathpromoted by A Thread for Life onlus together with other patient associations.

Life saving therapy

The home parenteral nutrition (NPD) the life-saving therapy that allows the patient to be adequately nourished. It consists ininfusion directly into venous blood of suitable nutrient mixtures. The patient learns to do it alone, or with the help of a family member, at home. In most cases the infusion takes place during the night hours, while during the day one can lead a normal life, therefore going to school, work or carrying out other activities. When the infusion should be performed at morningthere are gods portable systems, contained in
backpacks which are carried on the shoulders and allow the patient to move freely even outside the home.

Invisible for the Health Service

in Italy thedelivery and treatment of parenteral nutrition are not guaranteed consistently in all regions. For this reason, patient associations are fighting for the pathology to be included in the list of rare diseases within the Lea, the essential levels of assistancein order to guarantee all those who suffer from it, throughout the national territory, theaccess to the artificial nutrition treatment path. Indeed there is one unequal treatment within the community of patients affected by the same organ failure, with repercussions in terms of access to treatment and delays in diagnosing the disease. Another goal that Un Filo per la Vita and the other patient associations are aiming for concerns the improvement of the process of recognition ofcivil invalidin order to have adequate socio-employment protection.

Inclusion in the Lea

Sergio Felicioni, president of Un Filo per la Vita explains: We are asking for a few but stringent actions so that the institutions can guarantee that coding of benign chronic intestinal insufficiency by the National Health Servicetogether with thei
inclusion of the disease in the list of rare diseases (Annex 7 to the DPCM on Lea). We also ask that the update of the LEAs finally become concrete – continues Felicioni -. Patients, families and caregivers cannot continue to remain in a limbo situation which further attacks their condition of life and care.

The commitment of politicians

The Undersecretary of Health with responsibility for rare diseases, Marcello Gemmato, who spoke at the conference, gave his willingness to discuss with the Association: He will be an active part in the authorization process to ensure that the IICB is also recognized as a rare disease in all he said.
For her part, the Minister for Disability, Alessandra Locatelli, in a letter sent to “Un filo per la vita”, underlined that the commitment at all institutional levels, as well as the great challenge for the future, will guarantee everyone patients suffering from chronic degenerative pathologies, such as IICB, the full integration of care with social life. Locatelli undertook to bring to the attention of the Minister of Health Orazio Schillaci the recognition of IICB as a rare disease.