Barriers to access to health services for people with orphan-rare diseases in Huila, Colombia

Introduction. Despite the obligation to provide priority and timely care to people with orphan diseases, they continue to find barriers to health services. Objective. To determine access to health services barriers for people diagnosed with orphan or rare diseases. Materials and methods. We carried out a cross-sectional analytical study based on secondary data of 134 people reported with orphan or rare diseases in the department of Huila. Sociodemographic and clinical characterization and identification of barriers to access to health services at the geographic, economic, social, knowledge, cultural and health care levels were carried out. Statistical analysis was performed in Stata 15™ using measures of central tendency and association. Results. The median age was 15 years, 51.5% were male, 61.9% lived in urban areas, low income predominated, the most prevalent diagnosis was Guillain-Barré síndrome and 32.8% required hospitalization for complications of the disease. Living in rural areas presents a greater probability of having limited access to the center of care (OR = 10.7; 95% CI: 4.3-27) and lack of money for transportation (OR = 2.84; 95% CI: 1.26-6.52). Statistical association between subsidized regime and non-delivery of medicines (OR = 4.59; 95% CI: 1.44-19.17) was found. Conclusion. Participants face significant barriers to accessing health services associated with living in rural areas and their affiliation status.