Provision of medicinal products to children with orphan diseases in the Rostov region

Abstract

Provision of medicinal productsto children with orphan diseasesis an urgent problem, because itssolution involves medical and social issues. The aim of this work was to study the social and economic aspects of provision of medicinal products to children with orphan diseases in the Rostov region.

In the regional segment of the Federal Register of patients with orphan diseases, patients under the age of 18 years represent over 65% (rate of increase 76.6%), one in two patients has a disability. Structure of nosological forms of orphan diseases of patients under the age of 18 years has been determined. An analysis of the cost of pathogenetic therapy of patients with orphan diseases allowed to establish the top-5 most financially costly nosologies. Given the peculiarity of pathogenetic therapy of orphan disease and special conditions of  the administration of medicines, the need for redistribution of financing aid and additional attraction of CHI funds has been shown. It has been established that orphan diseases may not be included in the clinical and statistical groups together with other nosologies, not related to the orphan ones. When determining the estimated cost of medical care and medicinal therapy, it is necessary to form independent clinical and statistical groups for each orphan disease and develop indicators, characterizing clinical resources. Discussed the need for the social adaptation of children with orphan diseases.