Current situation of orphan diseases In Colombia 2017

Abstract

In Colombia, complex and rare diseases lack clarity within the current healthsocial security system, due to their low prevalence, difficult diagnosis, scarce treatment, high price of medications (for which they are considered high cost), andbesides great economic impact for the health system.

Although these diseases were regulated by Law 1392 of 2010, which is a great advancefor Colombia, because this law is very complete and takes into account many aspectsthat favor the health - disease process of these patients, it is true that it is little the advanceof this one in relation to the application of the referents that it proposes, for thatreason the idea arises to take a look around what has happened with the normativity andwhat is the situation or current degree of difficulty to which they face patients and theirfamilies with the Colombian health system before and after the diagnosis of an orphandisease, clarifying the need to talk about family, because these pathologies greatly affectthe entire family and social environment of the people who suffer it.

The purpose of this review is to make the situation of orphan diseases in Colombia abit more remarkable and the difficult path of patients and their families when facedwith these pathologies; It also contributes knowledge of the current state of the orphandiseases in Colombia, in addition to the slowness with which the subject advances andthe little commitment of both the government and the benefit plan administrators toarrive at an integral model of health care. , for this purpose, a bibliographic review ofthe existing regulations in Colombia and some approaches of people and associationsof patients dedicated to achieve advances in the management of patients with orphandiseases will be carried out in such a way that an approximation is reached for thegeneral public. In the basic aspects of these diseases and provide knowledge of thecurrent status of these diseases in Colombia.