A ‘Manifesto’, shared by patients, clinicians and representatives of the institutions, to improve the path of care for patients with benign chronic intestinal insufficiency (Iicb) in order to ensure timely and uniform access on the national territory to diagnostic and therapeutic treatments. The ‘Manifesto’ dedicated to the disease – which occurs when the intestine is no longer able to nourish the body, and if left untreated, causes death from malnutrition – was presented today, in the Chamber of Deputies, in an initiative of institutional awareness, promoted on the occasion of the National Day dedicated to the IICB, by the association ‘A Thread for Life Onlus‘. Objective: to draw attention to the care pathway of pediatric and adult patients who live with this pathology on a daily basis and who are not recognized by our National Health Service.
“The national plan for rare diseases, thus set up, will certainly give the expected results and we thank the association for having handed us today a Manifesto that represents a fundamental road map to guide policy”, declared the Undersecretary of Health Pierpaolo Sileri. “We recognize to the association the merit of collecting the requests of patients and their work as a collector between the territory and the institutions. from this year we will obtain concrete results ”, he concluded.
“The initiative promoted by a ‘Filo per la Vita’ represents an important opportunity to give a voice to patients suffering from benign chronic intestinal insufficiency. We thank the commitment of the association and we renew the closeness of the whole Parliament to patients suffering from this pathology: we hope as soon as possible the recognition of the rare disease within the National Health Service “, declared Ettore Rosato, Vice President of the Chamber of Deputies.
THE POSTER
“As president of the Health Commission, I worked to ensure that the approval process of the single text on rare diseases was as swift as possible – declared Annamaria Parente, president of the Senate Hygiene and Health Commission – in order to finally offer our country a framework law. The Manifesto that was presented contains concrete proposals to improve the care pathway of patients suffering from benign chronic intestinal insufficiency and short bowel syndrome. I sincerely hope that we can soon get an update of the Lea, also thanks to the allocation of 200 million inserted for this purpose in the latest budget law “.
“The Manifesto took shape thanks to the commitment of all the associates of the association – said the president of the association, Sergio Felicioni – who work in one direction only with the aim of acquiring a right to health. We will always be alongside the institutions to work in synergy towards the recognition of this pathology. To treat Iicb syndrome, specific knowledge and targeted treatments are needed, unfortunately – he underlines – the non-recognition of rare diseases by the NHS does not allow patients an adequate care path, also and above all from a financial point of view. If the pathology strikes in childhood, it is not uncommon for one of the two parents to stop working to provide the necessary treatment, although the patient benefits from a subsidy which is automatically lost in case of hospitalization for more than a consecutive month. In conclusion, those suffering from this syndrome are forced to change their lives and this, today, is no longer tolerable: we need a change of pace and legitimize the ICB as soon as possible on a par with rare diseases ”, is the warning.