DRUG PROVISION FOR PATIENTS WITH ORPHAN DISEASES IN THE SUBJECTS OF THE SOUTHERN FEDERAL DISTRICT: STRENGTHS AND WEAKNESSES

Introduction. To provide drugs to patients with orphan diseases is an obligation of the Russian Federation’s health care system. In every region of Russia, these patients are provided with drugs on the basis of the existing legislative acts adopted at the federal level and the normal legal documents developed by local authorities, which makes up a system for medical assistance to this category of patients. Objective: to identify the strengths and weaknesses of the drug provision system for patients with orphan diseases in the subjects of the Southern Federal District (SFD). Material and methods. The investigation used SWOT-analysis, content analysis, graphical and sociological analyses. The investigation object was the current drug provision system for patients with orphan diseases in 6 subjects of the SFD. Results. The opinion of 103 health authority specialists and healthcare workers who were in reception of patients with orphan diseases and who were involved in their drug provision was studied. Ten factors ensuring the normal functioning of the existing system of preferential drug provision for patients with orphan diseases were identified. Eleven negative factors that adversely affect the provision of drugs for patients were established. Their score estimates were given with regard to the competence of experts and they were ranked. The weaknesses of drug provision for patients with orphan diseases united into 3 groups: legal, economic and social ones. Conclusion. The results of analyzing the strengths and weaknesses of drug provision for patients with orphan diseases suggest that it is feasible to develop a scientifically based model of the most rational drug provision system that can regulate social problems and ensure the availability of medical and drug care for patients with orphan diseases.