OBJECTIVES: aHUS is a rare disease caused by chronic uncontrolled complement activation that affects children and adults. The morbidity and mortality associated with aHUS represent an unmet medical need. The analysis aimed to estimate social costs and health losses associated with aHUS in Bulgaria. Currently, the ICD of aHUS is not included in the List of diseases paid by the Bulgarian NHIF.

METHODS: The costs of illness were estimated using a prevalence-based approach. The analysis aims to cover all costs related to the control of aHUS from the perspective of the payer and society. Both direct and indirect costs are included. The cost data included has been validated by leading experts and reflects the patient's path. The main sources of information are hospital databases; expert opinions; data from specialized clinical trials for аHUS patients; medicine consumption and price data.

RESULTS: The calculated average monthly costs in BGN are: dialysis therapy - 2,167.50, control of complications of chronic renal failure (CRF) under clinical pathway (CP) - 1,416.25 BGN, plasmapheresis - 1,252.35, blood transfusion – 838,20, CRF complications control under CP - 705.67, antihypertensive treatment - 2.63, Erythropoietin - 167.21. The SIMP annual cost is 134.00.

CONCLUSIONS: The aHUS economic severity assessment recommends the inclusion of the disease with the relevant ICD-10 in the list of diagnoses for which the NHIF pays for treatment. The recommendation is based on the highly unmet needs. The inclusion of aHUS in local pharmacotherapeutic guidelines will enable physicians to conduct treatment consistent with international clinical practice.