Europe on the move: Italy establishes a Council for Rare Diseases
while Catalonia forms Rare Diseases Working Group
The Italian Health Minister, Livia Turco, has established the Council for Rare Diseases, composed of 34 representatives from different associations. The Council is affiliated with the National Centre for Rare Diseases of the Istituto Superiore di Sanita. The aim of the Council is to strengthen links and synergies among organisations that safeguard the Rare Diseases Network present in Italy. The themes targeted as focal points for initiatives in coming months include the simplification of procedures for diagnosing disabilities; management and continuity of assistance; reinforcement of the network of centres for rare diseases throughout the entire national territory; funding for research; formation for general practitioners; and shorter time to first diagnosis. The Italian National Centre for Rare Diseases presented a multicentric national project entitled Effective Communication and Counselling: Improving Listening in Rare Diseases. This project is a pilot experience of collaboration between voluntary organisations and health operators engaged in treating rare diseases. The scientific leader is Dr Simonetta Pulciani. The priority actions of the project to be accomplished in a two year period include the following: developing communicative-relational competences for different professional profiles, with a specific reference to counselling intervention; and favouring the sharing of different professional experiences for a real and proactive collaboration amongst colleagues within single services (team work) and amongst service operators active in the entire national territory (network work).
In another corner of our continent, the Catalan health ministry is responding to the rare disease patient needs survey that they funded late last year. Catalonia is an autonomous region of Spain with some 8 million inhabitants. The political, health and financial systems operate largely on an autonomous basis. Within this context, an investigation into the needs of rare disease patients was conducted between September 2006 and February of this year. The project has resulted in the comprehensive document, Assessments of needs and initiatives in Catalonia: A Spanish Regional Experience, containing information furnished by 24 patient associations, as well as families, care givers, and medical professionals, comprising in all 76 different resources that contributed to the effort. It represents the first attempt to define the needs of rare disease patients and their caregivers in the region. Using a qualitative approach, authors Maria Mena, Dr Marga Pla and Pr Josep Torrent-Farnell, all from the Dr Robert Foundation-UAB, sought to evaluate patient access to health, education, mobility, and other resources. The needs of the patient were juxtaposed with potential actions that would meet those needs. Increasing awareness, both amongst society and professionals, emerged as a major need, with the possibility of establishing an information policy within the region as a potential corresponding action. Access to medical care was underscored, but with an emphasis on the need to shift from an exclusively medical perspective toward an approach that would address the general quality of life for the patient, encompassing significant social factors. Creating protocols that combine medical needs with social and psychological elements was recommended as a potential action. Increased support for caregivers was another important point that emerged. In terms of economic support, new orphan drugs remain the number one priority, but state-supported interventions, such as medical devices, or special state insurance schemes for products not usually reimbursed (patients who need special dietary products or skin creams, for example) were also mentioned. Adapted housing was another need that could perhaps be subsidised by government. Finally, the need to promote rare disease and orphan drug research at the state level but also in collaboration with Spain and at the European level was highlighted. The document was presented to the Catalan ministry of health last month. Since then, a Working Group has been established, composed of government, professionals, and patients ready to prioritise the many elements that emerged in the report. Patients want to see a continuum from diagnosis, through primary care, special care, and incorporating the various social elements that will ensure quality of life for Catalan’s rare disease patients and their families. The outcome of this report is leading to a Catalan Plan of Action that will take the French plan as its general model.