Exclusión del paciente con enfermedades huérfanas del sistema general de seguridad social en salud

Abstract

Orphan diseases affect a large part of the world population, bringing with its difficulties in the social and family environment of those affected; this being a public health problem. Noting also that they are diseases that generate high costs. This article has as a general objective: to determine which are the legal or normative gaps in the General System of Social Security in Health in Colombia that generate exclusion for patients diagnosed with orphan diseases for their treatment and diagnosis. Method: descriptive and exploratory from the literary compilation, thus highlighting the existing gaps for these orphan diseases, hereafter called HD. Results: despite the fact that they are diseases that require comprehensive care, treatments and medications are not included in the health system, which hinders accessibility to efficient and timely care. Colombian jurisprudence has gaps in the applicability of legal guidelines for the treatment of HD. Conclusion: Orphan diseases have an impact on the health and social costs that alter the quality of life of patients and their families, therefore, there is no quality user-centered care.