The Italian Parliament voted the motion that recognises Idiopathic Pulmonary Fibrosis (IPF) as a rare disease
IPF is going to be included in the forthcoming review of the Italian National Plan for Rare Diseases, a historical achievement that gives hope for a better future to patients, relatives and healthcare professionals. In this long process, patients’ associations have played a fundamental role, by informing people, raising awareness of the problem, helping patients and their families and bringing them together.
The different actions to raise awareness have been supported by many Italian MEPs, and especially: MEP Cécile Kyenge, who made possible the presentation of the European IPF Patient Charter in Brussels in 2014; MEP Elena Gentile, who recently supported the presentation of a Written Declaration to the EU Member States; Italian Members of Parliament, in particular Ms. Paola Binetti and Mr. Pierpaolo Vargiu (photo), who on April 5th 2016 proposed a motion that was approved unanimously in the Italian National Low Chamber, leading to the inclusion of IPF in the rare diseases list.
As a matter of fact, only Piedmont and Tuscany had previously recognised IPF as a rare disease spontaneously, identifying an exemption code for all health services needed by patients. Now, by accepting the motion at the National Low Chamber, the government has committed to develop information campaigns, as far as it is concerned, with the aim of recognizing the rare disease at a national level.
Patients’ and relatives’ associations are obviously satisfied with the result, starting from the Italian AMA Fuori dal Buio, the Italian representative in the realization of the European IPF Patient Charter and a founding member of the newly born European IPF Federation (EU-IPFF). These associations have been working hard in the last years to realise important initiatives, such as the creation of the information portals ipfworld.org and ipfcharter.org, and the development of four campaigns for the IPF World Week.
“We are truly grateful to Mr Vargiu, Member of the Chamber, for his commitment to our cause” – said AMA’s President Rosalba Mele, from Modena – “for giving hope to patients from all over Italy. An important achievement, awaited for a long time: we thank all Italian and European Members of Parliament who supported us, together with Roche, for its unconditional support.”
Mr. Vargiu himself explains what has changed: “The Undersecretary for Health Care, Vito De Filippo, assured that IPF will be included in the forthcoming review of the Italian National Plan for Rare Diseases, coincidentally ending in 2016, and that patients will be able to access free health services easily as soon as possible”.
As Mr. Vargiu declared during the presentation of his motion at the Low Chamber, “IPF is a paradigm of the challenge awaiting the Italian Health Care system. By preparing to deal with it, we take up the challenge of modernising the system, of trying to provide citizens with the best quality services. An important step – insisted Mr. Vargiu – in the fields of health care assistance, research, and networking among associations, which can now offer an ever-improving service to their associates, patients and families.”
Mr. Vargiu then said: “I want to thank AMA Fuori dal buio again for its passionate contribution. When the “tenants of the government building” pay attention to the voice of the people outside, it is easier to cooperate to do things that are useful for the Community. This is particularly true for that part of the Community that is “more frail” and needs more attention, i.e. the citizens who need health services.”