Exploring the Economic Aspects of β-Thalassemia in Jordan in 2019

Abstract

Thalassemia are inherited hematological disorders considered among the most common genetic disorders worldwide, occurring more frequently in the Mediterranean Region. The WHO estimates that Beta-thalassemia affects 2.9% of the world’s population. In Jordan, the carrier prevalence rate of thalassemia is from 2-4%. Patients with thalassemia need a lifelong care, devastating their quality of life and imposing overwhelming psychological and financial burden on patients and their families. The Jordanian Ministry of Health (MOH) is the sole facility responsible for treating these patients from the pre-marital program until required medications regardless of their nationality. This study aimed to estimate the economic burden of thalassemia in Jordan in 2019. All 680 thalassemia patients admitted to thalassemia centers in Jordan and coming to out-patients’ clinics from July 1st to Aug 31st, 2019 are included. Data were collected using a pre-developed questionnaire from the electronic medical records. The economic burden was estimated from MOH perspective and societal perspective. The average annual cost was estimated to be 2,674 JOD for a single thalassemia Jordanian insured patient and 4,627 JOD for un-insured, while the non-Jordanian patient’ annual cost was estimated 4,751 JOD if insured and 6,651 JOD if un-insured. The total economic burden of thalassemia in Jordan in 2019 was estimated to be 2,148,741 JOD. Of this amount, 1,393,329 JOD was for Jordanians and 755,412 JOD for non-Jordanians. In conclusion, this high burden of thalassemia in Jordan requires adopting new controlling policies; pre-marriage counseling, education and raising awareness should be encouraged.