Situación actual de las enfermedades huérfanas en Colombia 2017
DOI:
https://doi.org/10.21615/cesder.8.2.2Resumen
En Colombia las enfermedades complejas y raras, carecen de claridaddentro del sistema de seguridad social en salud vigente, debido a su bajaprevalencia, difícil diagnóstico, escaso tratamiento, alto precio de los medicamentos(por lo cual se consideran de alto costo), y además de granimpacto económico para el sistema de salud.
A pesar de que estas enfermedades fueron reguladas en la ley 1392 de 2010,lo cual es gran avance para Colombia, pues esta ley es muy completa y tieneen cuenta muchos aspectos que favorecen el proceso salud - enfermedadde estos pacientes, es cierto que es poco el avance de ésta en relación conla aplicación de los referentes que propone, por tal motivo surge la idea deechar un vistazo alrededor de lo que ha pasado con la normatividad y cuál esla situación o grado actual de dificultad a la que se enfrentan pacientes y susfamilias con el sistema de salud Colombiano antes y después del diagnósticode una enfermedad huérfana, haciendo la claridad frente a la necesidadde hablar de familia, porque estas patologías afectan en gran medida todo elentorno familiar y social de las personas que las padecen.
Esta revisión tiene como objetivo hacer un poco más notoria la situación delas Enfermedades huérfanas en Colombia y el difícil camino de los pacientesy sus familias cuando se enfrentan a estas patologías; aporta también conocimientodel estado actual de las Enfermedades huérfanas en Colombia,además hace notoria la lentitud con la que avanza el tema y el poco compromisotanto del gobierno, como de las administradoras de planes de beneficiopara llegar a un modelo integral de atención en salud; para ello se realizaraun revisión bibliográfica de la normatividad existente en Colombia y algunosplanteamientos de personas y asociaciones de pacientes dedicadas a lograradelantos en el manejo de los pacientes con enfermedades huérfanas, de talmanera que se llegue a una aproximación para el público en general en losaspectos básicos de estas enfermedades y aporte conocimiento del estadoactual de estas enfermedades en Colombia.
Current situation of orphan diseasesIn Colombia 2017
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.
Keywords: Rare disease, Ultra Orphan Disease, Neglected Disease, Orphan Disease,Social Security.
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