Orphan diseases, the colombian state and private health care institutions

Abstract

Orphan Diseases (E.H.) have been present in the genetic makeup of thousands of human beings worldwide and nationally, affecting not only the proper physical, social and cognitive development of those who suffer from them; but also, preventing the full enjoyment of a happy and healthy life, which, as persons, has been established as a universal right. Such damage, in addition, being linked to the scarce medical investigation of the same, has as a starting point, the meager legal regulations. Under this context, this article arises, with the objective of making visible the legal-social reality of patients with orphan diseases in Colombia. The approach is hermeneutical-interpretive with a documentary-bibliographical method reaching the point of theoretical saturation. A critical reflection on Law 1392 of 2010 was carried out, analyzing its congruence or not, with the experience of the affected people within the health system. Finally, it is concluded that individuals with orphan diseases see their right to health violated.