The Parliamentary Intergroup for rare diseases “has already been reconstituted to carry on the work already undertaken in the previous legislature. We took the initiative with Senator Stefani and other colleagues have already joined. Next week we will have the first meeting because, it is it is true that the budget law is particularly tight this year, but it is important to propose amendments already in this law, it is right to propose initiatives and amendments immediately because there is no time to waste”. So the honorable Maria Elena Boschi (action-Italia Viva), of the VII Commission for Culture, science and education, speaking this morning at the ‘VII Orphan Drug Day: rare diseases, the requests of the sector to the new government’, organized by Omar, Observatory rare diseases.
“Deputies and senators from the previous legislature who have committed themselves in this area will also be involved in this new Intergroup, because it is right not to lose skills and energy. We will ask senators Binetti, Noja and Bologna to be close to us”, underlines Boschi, at the first meeting audience of the 19th legislature dedicated to the topic, which saw the discussion of a representation of patient associations belonging to Amar (Alliance for rare diseases), parliamentarians, representatives of ministries and sector experts.
“The road map is clear – continues Boschi -. We know the issues left over from the last legislature: the implementing decrees and more resources. There is a lot of work to be done at the national level and a structural fund with an annual report to verify the implementation of the rules on newborn screenings in which the new pathologies for which this procedure is to be foreseen must be included. They are immediate priorities, but we must review the Lea (Essential levels of assistance, ed) and tariffs, with the inclusion of disabling diseases “.
“In the last legislature – recalls Boschi – we had some small signals on two pathologies. On fibromyalgia”, for example, with “a small national fund. It’s not like being in the Lea, but it’s a recognition. It is not enough, but it signals a change of perspective. Having a companion who suffers from this pathology – reports the Honorable Member – we know how many differences there are also in the regions”, a question which “is still an open wound, because we tried years ago”, with the constitutional reform, “to face with eyes different, the matter, but it didn’t go through”.
“In the work we will do – anticipates the parliamentarian of Azione-Italia viva – we will involve the parties transversally in the Chamber and Senate, we will rely on listening to the associations, the Observatory, those who deal with this reality every day, who are next to to these people also from a professional point of view”.
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