Legal and organizational healthcare environment for the children with primary immune deficiency disease in Russia

¹ Ural State Law University, Komsomolskaya str., 21, Yekaterinburg, Russia
² Ural Federal University, Mira str., 19, Yekaterinburg, Russia

^* Corresponding author: super.nechkin@gmail.com

Abstract

The aim of the research, the results of which are presented in the given article, comprises studying the state of legal and organizational healthcare environment provided to the Russian children with diseases caused by primary immune deficiency, as well as identifying the prospects for creating such environment. The relevance of the theme under study is due to the fact that the number of patients with diseases caused by primary immune deficiency is increasing in many countries, including the Russian Federation. This group includes more than 450 different diseases caused by defects in cells and proteins that are the components of the immune system. A significant number of Russian children suffer from diseases caused by severe combined immune deficiency: this is one of the most dangerous forms of primary immune deficiency disease. Hereditary conditions begin functioning even before the birth of a child, they are difficult to diagnose, often have fatal consequences, such as director disability and death. Their treatment requires special resources, such as high-tech medical care, emergency treatment, the use of special medical technologies, personnel and financial support. The authors of the article prove that difficulties and problems can be minimized in case of the implementation of the specific legislative and organizational actions.