[Rare diseases--a problem of healthcare-related social security law].
In Germany orphan (or rare) diseases are not a major issue of healthcare-related social security law. Laws, regulations, courts and the legislature have so far not succeeded in shaping an adequate legal approach. The deficient legal framework seems to correlate to the lack of medical knowledge about orphan diseases. Consequently, equal access to treatment--one of the principles of the German healthcare system--for patients suffering from orphan diseases is not sufficiently assured. Therefore, German legislation is facing the urgent challenge to compensate for the lack of medical knowledge and healthcare resources in this field by defining new rules, by establishing specific health authorities and by reforming the allocation of research efforts. In a way, rare diseases are orphans that attract little public and scientific interest. Provision of an adequate legal framework for the treatment of and research into orphan diseases is likely to promote significant improvements for those affected.
Rixen
Stephan
S
Lehrstuhl für das Recht sozialer Dienstleistungen und Einrichtungen, Institut für Sozialpolitik und Organisation Sozialer Dienste, Universität Kassel. stephan.rixen@uni-kassel.de
D003695:Delivery of Health Care / Q000191:economics / Q000592:standards; D005858:Germany; D006801:Humans; D011785:Quality Assurance, Health Care; D035583:Rare Diseases / Q000191:economics* / Q000628:therapy*; D012943:Social Security / Q000191:economics / Q000331:legislation & jurisprudence* / Q000592:standards