OBJECTIVES: As per the TIF (Thalassemia International Federation) report, Egypt has 10,000 registered thalassemia cases and more than 20,000 non-registered cases where 95% are beta thalassemia major. The Public sector Health Insurance Organization (HIO) covers 7,000 pediatric patients with monthly cost from 1800 EGP to 5000 EGP based on the patient age, however co-payment is still high especially among the adult population. The study aims to calculate the cost of b-thalassemia major among pediatric and adult population in Egypt from patient’s perspective.

METHODS: A randomized sample of 35 patients (Adults and caregivers of pediatrics) from both rural and urban areas completed a self-administered survey through the Egyptian Thalassemia Association, stating direct, indirect medical costs they encounter through their disease journey as well as indirect costs (absenteeism), SPSS was used to analyze the data from survey, and then an excel based cost of illness model was then built to project the results to the population.

RESULTS: Total annual cost of B-Thalassemia in Egypt was calculated to EGP 268,737,528 (14.3 M USD) equivalent to EGP 26,874 (1,432 USD) per patient per year, of which direct medical costs contributes with 53% equivalent to EGP 141,302,977 (7.5 M USD) with the highest cost goes to medication and monitoring costs; EGP 64,028,710 (3.4 M USD) and EGP 28,255,806 (1.5 M USD) respectively. Direct non-medical costs were calculated to be 4% equivalent to EGP 11,602,968 (618,360 USD). Indirect cost was 43% equivalent to EGP 115,831,583 (6.1 M USD) with absenteeism of adult patients and caregivers of pediatrics equivalent to EGP 67,060,390 (3.6 M USD) and EGP 48,771,193 (2.6 M USD) respectively.

CONCLUSIONS:

Even with the insurance coverage of the public sector, Thalassemia patients still suffer a high financial burden given the average annual wages in Egypt, especially the adult patients.