Legal status of patients with congenital immunopathologies: practical sociology

The patients’ legal status is often at the core of legal discourse, such as in terms of registration of expensive medicines and their inclusion in lists (e.g., life-saving medicines and expensive medicines), diagnosis of new diseases that require additional state support, and creation of special organizations of assistance to seriously ill children. However, it is not often possible to hear the “voice” of the patient in professional discussions of representatives of state bodies, lawyers, and human rights defenders. In this study, the author hypothesized that it is not enough for scientific discussions to developed proposals for implementation in regulatory regulation to conduct only legal interpretation and analysis. No less important is the definition of the “actual balance of forces in society,” which is a part of the immediate task of practical sociology. This study aimed to confirm this belief by considering the legal status of patients with congenital immunopathologies from the perspective of the patients themselves through a sociological survey, questionnaire survey, and in-depth interview.