Institutions have been requested to insert a specific implementing decree for Congenital Hemorrhagic Diseases in the Consolidated Law on Rare Diseases
To guarantee the continuation of the agreement on congenital haemorrhagic diseases (Mec), not to withdraw from the fundamental welfare principles contained in the Consolidated Law on rare diseases and participation in the National Committee for rare diseases provided for by the new legislative provision. the appeal that the Federation of haemophilia associations (FedEmo) addressed to the institutions on the occasion of the World Hemophilia Day, which this year was celebrated on 11 April. According to the latest data released by the Higher Institute of Health in 2018 in Italy there are 10,554 patients affected by Mec present in the national register of congenital coagulopathies. Of these 4,109 are affected by haemophilia A, 882 by haemophilia B, 3,245 by von Willebrand’s disease and 2,318 by defects in other coagulation factors. There are 54 haemophilia centers in Italy. A dedicated assistance network capable of efficiently ensuring the necessary assistance for all. Consistent with its constant commitment to safeguarding the existing network of treatment centers for congenital haemorrhagic diseases – declared Cristina Cassone, FedEmo president – the Federation asks politics and institutions for a concrete commitment to avoid the adoption of measures that may cause a reduction in the quality of care for people with rare bleeding defects. FedEmo proposes to this end as a reference for the National Committee envisaged by the Consolidated Law on rare diseases to help define and protect adequate care pathways for all Mec patients.
The assistance networks for diagnosis, treatment and research, in particular for rare diseases, represent an essential cornerstone for promoting, disseminating and maintaining the quality of treatment standards in infrequent diseases – explains Giancarlo Castaman, director of the Hemorrhagic Diseases Center, Aou Careggi di Firenze – In particular, for historical reasons, haemophilic syndromes have always represented a sensitive observatory of the attention of the health system towards rare diseases, and at the same time stimulating the creation and development of advanced diagnostic and therapeutic technologies. A model that remains a paradigm of the evolution of medical and scientific progress, a stimulus and inspiration for other rare genetic diseases, also for the important active role played by patient associations.
The Federation asked the XII Senate Commission to be heard during the approval process of the implementing decrees of the Consolidated Law, in order to guarantee the continuation of the Mec agreement and the protection of existing Mec centers and networks. The figure of expert hematologists within the reference centers cannot be replaced tout court by medical personnel lacking adequate training, stressed Cassone. Not to mention that currently available a large number of drugs capable of ensuring an effective and personalized therapy for all patients, for the correct management of which it is essential to make use of the clinical practice of haematologists expert in Mec. The need for specific skills in the assistance and care of haemophilia patients is another focal point of the letter of commitment that FedEmo has sent to the Government. Precisely for this specificity, the Federation has asked to establish or maintain dedicated national and regional working groups for congenital hemorrhagic diseases, composed of expert doctors, representatives of scientific societies, the head of the National Rare Diseases Coordination Center for the national table. and from the regional one for the regional tables, by the representatives of the patient associations.
April 11, 2022 (change April 11, 2022 | 9:04 pm)
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