Hemophilia in Jordan: An Economic Burden Dilemma of Rare Disease

Jordan is an upper-middle-income country with high expenditures on pharmaceuticals. The development of new rare disease (e.g. hemophilia) therapies has encountered significant obstacles with respect to economic the cost of the disease and treatment. The aim of this overview was to estimate current annual spending on hemophilia treatment in Jordan and estimate the financial impact of adapting a new medication (Emicizumab) recently used for treating hemophilia patients in Jordan. Methods: based on the literature review, direct medical costs were quantified, required items’ costs from the actual practice in Jordan were elicited from an expert panel, and a focus group meeting with the same was conducted one month later to determine the current estimated number of hemophilia Patients in Jordan, identify current treatment on demand quantities and their prices. All related medical costs were also identified (e.g. bleeding, the estimated number of hospital days, and/or Intensive Care Unit per bleeding episodes). Estimation of the annual consumption of current on-demand treatment quantities and cost were calculated and compared with scenarios of adding the new therapy (Emicizumab). Results: showed that the financial impact of using Emicizumab S.C. instead of Recombinant Factor VIIa I.V. on the budget of the Jordanian government will be 425,747 JOD ($601,338) annually. Conclusions: the economic advantages of a new hemophilia treatment might be very substantial for patients.