Also this year, on the occasion of the National Day dedicated toBenign chronic intestinal insufficiency (Iicb), A Thread for Life onlus renewed its commitment through an institutional awareness initiative – held this morning in the Chamber of Deputies – to ask for the Iicb to be included in the list of rare diseases. Also present was the Undersecretary for Health Marcello Gemmato. Many patient associations (Aised; Amici Lazio onlus; Fais odv; Apistom Turin odv; Anna Association; Eseo Italia; Gipsi Odv; Poic & Surroundings onlus; United for Pipo) also took the field – reports a note – homogeneity of taking charge and therapeutic pathways throughout the territory, training of health professionals, support for caregivers and assignment of disability”.
Chronic benign intestinal insufficiency, one of the rarest organ failures, occurs when the intestine is no longer able to perform its primary function, which is to nourish the body. If not properly treated, it can lead to death from wasting.
“In Italy – said Sergio Felicioni, president of Un filo per la Vita onlus – there are about 800 cases between adults and children. Those affected are often forced to live with parenteral nutrition. A disabling condition that must find its recognition in the inclusion of the national list of rare diseases”. The meeting was also an opportunity to make another important appeal to politics: the update of the Essential Levels of assistance stopped in 2017, which can no longer be postponed.
Gemmato, ‘all my commitment to help improve access to treatment and overcome regional inequalities’
”I strongly claim the commitment of the ministry – the words of Undersecretary Gemmato – which, also thanks to the support of the entire political class, patient associations and the scientific community, managed to get the National Plan on rare diseases dismissed, which since 2016 it has been waiting to be updated. The political convergence that we are registering on these issues, combined with the time horizon that the executive has given itself, will make it possible to respond to the needs of patients in a more rapid and effective way. With seriousness, punctuality and determination, I will put all my efforts into helping improve access to treatment and overcoming regional inequalities. It is my wish to have a short discussion with the association to learn more about the state of the art and above all to listen to the voice of patients with Iicb and their families.”
In a letter addressed to the association, the Minister for Disabilities, Alessandra Locatelli underlined “that the commitment at all institutional levels – as well as the great challenge for the future – will be to guarantee all patients suffering from chronic degenerative pathologies such as Iicb the full integration of care with social life. There are many needs that must be satisfied and it is certainly essential to proceed with the updating of the Lea. In one of the next meetings with Minister Schillaci, I will provide attention to the issue, certain that for him it is already a mandate priority”. “The right to have equal dignity in the therapeutic process – added Ugo Cappellacci, president of the Social Affairs Commission in the Chamber – should be taken for granted. I am very confident in the Government’s action which has already shown itself to be attentive to issue of rare diseases.As president of the Commission, I take on the commitment starting from a parliamentary hearing useful for getting to know better I the benign chronic intestinal insufficiency and so that the requests of the ‘Un Filo per la Vita’ Association do not remain unheard. We must also work for regulatory maintenance, assuming obligations not only of means but also of results”.
Finally, Chiara Colosimo, member of the Social Affairs Commission in the Chamber: “The universality of access to care is a principle enshrined in the Constitution, but which is not often reflected in the reality of the facts: not only is there a discrepancy in taking charge of patients from Region to Region but also in the administration of treatments for the same pathology”. It is therefore necessary “to re-imagine our NHS – he concluded – by promoting continuous territorial training so that the work carried out admirably by specialist medicine is not dispersed. From the inauguration of the new Parliament to today, we have moved in this direction both by appointing an Undersecretary who would have powers for rare diseases and by having an ad hoc national plan approved with a relative fund for research. This is an important first step aimed at recognizing these pathologies and I am ready to do my part on this ” .