Modelo de gestión para la atención integral de pacientes con enfermedades huérfanas o raras en Colombia

Abstract

Rare or orphan diseases are those with low prevalence in the population, and in several countries have a different definition according to the number of patients that are affected towards the population. The World Health Organization (WHO) defined them as a disorder that affects 650 to 1,000 people per million inhabitants, of which about 7,000 pathologies have been identified. In Colombia its prevalence is less than 1 per 5,000 people and includes: rare, ultra-orphan and neglected diseases.

Patients with these diseases add challenges to health systems, because although affect a small percentage of the population, attention implies a high economic burden for the costs involved in their care, complexity in diagnosis, treatment options, monitoring and rehabilitation. Addressing rare diseases requires an interdisciplinary and intersectoral management, which involves the organization of each player in the health system for management through a model that include possible dynamics between them and the responsibilities of each one.

Therefore, and taking into account the need to develop specific health policies for the management of these diseases, this document presents an approach to the formulation of a management model for comprehensive care of patients with rare diseases in Colombia. This research describes the different elements and characteristics of the models of clinical management and rare diseases through a literature review, in which the description of the actors in the Colombian health system, the relation with comprehensive care models and other countries experiences, let us develop an approach of a Colombian comprehensive management model to these patients.