The single text on rare diseases is law: this is what changes and for whom economic aid is foreseen
The Senate approved the consolidated text on rare diseases. The president of the Hygiene and Health Commission of Palazzo Madama, Annamaria Parente, said that it was unanimously approved, and that it represents “a concrete help to patients and their families and an example of good politics “.
The consolidated text translated into law “organically defines rare diseases, the rights of those affected and the organizational framework”, as explained by the director of the Rare Diseases Observatory, Ilaria Ciancaleoni Bartoli. The list of rare diseases will have to be updated.
Single text on rare diseases, what changes
As reported by Ansa, from the entry into force of the law, with its publication in the Official Gazette, six months will be available to achieve some objectives necessary for its full implementation:
- within two months the National Committee for Rare Diseases must be established by decree of the Ministry of Health;
- within three months the Solidarity Fund for people suffering from rare diseases must be established by decree of the Ministry of Labor, in agreement with the Ministry of Health and MEF;
- within three months Two agreements must be made at the State-Regions conference, one relating to the approval of the Second National Rare Diseases Plan and reorganization of the Network and the other relating to the methods for ensuring adequate information for health professionals, patients and families;
- within six months a regulation of the Ministry of Health must be drawn up, in agreement with the Ministry of University and Research, to establish the mechanisms of tax incentives in favor of subjects, public or private, engaged in the research and production of orphan drugs.
Among the innovations introduced by the consolidated act, as reported by Corriere della Sera, there is uniform access to care across the country, the definition of therapeutic plans at the expense of the National Health Service (NHS), the availability of orphan drugs and the guarantee of a monetary contribution for the school or work placement of rare patients and their caregivers.
The tweet of Minister Speranza
The Minister of Health Roberto Speranza he wrote on Twitter: “The bill on rare diseases was unanimously approved in the Senate today. Among other things, it provides for the updating of the list of diseases, the strengthening of screening and the establishment of a fund for patients and families. The NHS must take care of everyone“.
Virgil News | 03-11-2021 17:01