“Well Consolidated text but no steps back on haemophilia”

The approval of the Consolidated Law on rare diseases is good, but no step backwards on haemophilia“. After the go-ahead in the Senate in recent days, FedEmo, Federation of Haemophilic Associations, launches an appeal to the institutions:” It appears essential – he asks – a specific treatment for haemophilia, and in general for all congenital hemorrhagic diseases (Mec), within the Text. In fact, if on the one hand the initiative to rationalize and unite the multiple rare diseases under a single care umbrella represents an important step in responding to the needs of many patients and caregivers, on the other the specificities that characterize haemophilia and other Mecs. they demand a differentiated classification “.

The Mecs – explains a FedEmo note – while falling within the scope of rare diseases, currently affect a large number of patients, over 11 thousand in our country according to the data of the Register of the Higher Institute of Health, and enjoy its own dedicated care network, already present in the area for some time, structured in regional reference centers and centers with highly specialized medical staff, able to efficiently ensure the necessary assistance to all patients. For this purpose in Italy theAgreement on Mec, drawn up on the initiative of FedEmo and signed by the Government, Regions and Autonomous Provinces of Trento and Bolzano in 2013, which governs and defines in an extremely detailed manner the organization of care networks specifically dedicated to patients. The Agreement has been implemented by all the Regions and is currently being implemented at the local level.

“We believe the approval of the Consolidated Law on rare diseases is a necessary tool, but not sufficient to give concrete answers to all rare patients and especially to people suffering from congenital hemorrhagic diseases – he declares Cristina Cassone, FedEmo president – We have already asked the XII Commission of the Senate, during the parliamentary process for the approval of the law, the safeguarding and protection of existing health care networks, which can also represent a virtuous example for other pathologies and not only for the care of people with haemophilia. For our specificity and our history, we therefore ask to be audited as patients during the approval process of the implementing decrees of this Consolidated Law, in order to guarantee the continuation of the Mec Agreement and the protection of existing Mec centers and networks “.

This model, built over decades and proved highly effective – claims FedEmo – cannot be dispersed within a general reorganization of rare diseases. The figure of expert haematologists within the reference centers cannot be replaced tout court by medical personnel without adequate training, not to mention that a large number of drugs capable of ensuring effective and personalized therapy are already available today. for all patients.

agree Paola Boldrini, vice president of the XII Permanent Commission on Hygiene and Health of the Senate: “The approval by the Commission of the Consolidated Law on rare diseases is a very important step forward and awaited by many patients – he says – But for the pathologies that already benefit from organizations and centers of reference with healthcare professionals and patients it will not be about starting from scratch. In fact, a specific agenda signed by me foresees to treasure all the excellences already present in the area, such as for haemophilia and thalassemia. The existing networks will continue their valuable activity and will be able to coordinate with the new structure to benefit from concrete aid “.

For the peculiarities described, according to the Federation of Hemophiliacs “a specific treatment for the Mec field is indispensable within the Consolidated Law on rare diseases, as well as evaluating the appropriate measures that guarantee the maintenance of an adequate standard of care to respond to all the needs of patients “.

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