German evaluation moves forward process for implementing strategy for rare diseases...
The German Ministry of Health in August issued the results of a study undertaken in order to review the current medical and social situation for the country’s estimated four million-plus rare disease patients, define priority fields for action, and develop solutions in harmony with the European Council Recommendations, including a strategic plan for rare diseases. The evaluation report was compiled from a variety of sources, including qualitative and quantitative empiric surveys, structured interviews, discussions, and an evaluation of relevant publications. The results highlight the particular issues that rare disease patients and their families encounter in accessing health care services. Several areas in need of action were identified: general care, specialised care, diagnosis and therapy, information, research, the need for a national board of experts (“Aktionsforum”) for rare diseases - as well as a strategic plan of action. The study revealed that patients need improved access to care. Specialised service providers should offer integrated and coordinated therapy. Shared-care models, as well as specialised clinics and reference centres, are needed to meet patient needs. Patients and their families also need timely diagnoses. Current diagnostic methods/procedures are lacking or insufficient and need improvement. For medicinal products, the current outpatient compensation system needs redeveloping in order to implement new reimbursement instruments reflecting the complex, heterogeneous features of many rare diseases. For many rare diseases there is inadequate information available and existing resources are unknown to the majority of persons. For improving information, it is therefore necessary to improve existing services. In terms of research, implementing new or improving existing registries could increase knowledge. Collaboration at the EU level is vital. The study concludes that to improve the health situation in the field of rare diseases, a strategic plan of action corresponding to the priority areas identified at the European level would be helpful. It was suggested that a national plan could be developed by the Aktionsforum group of experts and would ideally include defined objectives and target dates. All relevant stakeholders of the German health system should participate to maximise this plan of action. Part of the challenge of developing a national strategy for rare diseases in Germany, a country of some 82 million inhabitants, is the complexity of the health system. Health care responsibilities are shared and divided between the central government and the country’s 16 federal states (known as “laenders”). At a meeting of the European Project for Rare Diseases National Plans Development (EUROPLAN) that took place in September, it was observed that the federal structure in Germany does not permit a strictly top-down approach, but rather a joint, coordinated and objective-oriented action involving all the actors at both the national- and state-level (e.g. a cooperative network involving all key bodies and organisations) will be necessary. The next step to move forward will be the creation of the Aktionsforum.
Consult the Ministry of Health evaluation (in German language)
Consult the Ministry of Health press release (in German language)