The pharmacy tourism. Part I. The analysis of state of medicinal support of patients with rare diseases

Abstract

In Russia, the orphan diseases for many years are the object of intent attention both of the national legislation and health care system. The lower prevalence of these diseases in population causes predicaments to timely diagnosis, drug provision and medical care. Besides, absence of integrated approach to issues of diagnosis and treatment of rare diseases contribute nothing to fast solving of actual problems in this field. Frequently, impossibility to get necessary course of treatment forces patients with orphan diseases to seek for alternative sources. The article assesses current situation with medications support of patients suffering from diseases included in the list of life-threatening and chronic progressive rare (orphan) diseases that result in shortening life-span or disability and diseases included in the Federal Program "The 14 high-cost nosologies". The issues of keeping record of patients and financing medications purchase are touched upon. The study results identified problems of organization of medication support of patients with orphan diseases associated with complexity of accounting their number and absence of integral system of preferential medication support.