SOCIOECONOMIC CHARACTERISTICS and COSTS of RARE and ORPHAN DISEASES in PERU, 2019

Introduction: The rare and orphan diseases (ERH) constitute a current challenge due to the little attention given to them. Objectives: Describe the socioeconomic characteristics of rare and orphan diseases (ERH) in Peru, 2019. Methods: Descriptive observational design. The information was obtained from FISSAL administrative records and an intentional sample of 20 patients was taken to carry out the questionnaire on ERH. For economic records, a review of the public budget of the MEF was made. The data analysis was descriptive and inferential. Results: There were 454 patients with a total of 49 ERH, of these, the most representative age groups were schoolchildren and young adults (18% each) and the most frequent diagnosis was Tetralogy of Fallot (22%). The questionnaire on ERH reports a median of 7 months in the delay of diagnosis and between 3 and 5 doctors were visited. Likewise, 30% considered that it generated a high to very high expense. It was calculated that the ERH budget constitutes 2.25% of the total budget for high-cost diseases, likewise, the ERH budget was different between 2014 and 2019. Conclusions: The population with ERH in Peru is not large; however, it requires greater attention to access to health services, as well as a greater budget allocation.