Economic Burden of Rare Diseases With Common Diseases as a Comorbidity in Poland (Ekonomiczne obci¹¿enie chorobami rzadkimi ze wspó³istniej¹cymi chorobami powszechnymi w Polsce)

Purpose: Some of the common diseases are the comorbidities of rare diseases and they impose a considerable economic burden on the national health care system and economy. We examined the economic burden of a rare disease (tuberous sclerosis complex – TSC) in Poland and its comorbidities (common diseases – epilepsy and status epilepticus) while taking into account a sensitivity analysis. Design/Methodology/Approach: This study is a prevalence-based top-down cost of illness study that analyzes the direct and indirect cost of TSC and its complications. The research was based on the data obtained from the National Health Fund (hereinafter referred to as “NFZ”, which is the abbreviation of the source language name of the institution), Social Insurance Institution (hereinafter referred to as “ZUS”, which is the abbreviation of the source language name of the institution), and Poland’s Central Statistical Office (hereinafter referred to as “GUS”, which is the abbreviation of the source language name of the institution) by using the human capital method. Findings: The total cost of TSC and its complications in Poland, when taking the sensitivity analysis into account, amounts to EUR 2.2 million – EUR 3.4 million, which has a prevalence of indirect costs (61%–83% of the total costs). The conducted analysis indicates that the higher costs of common diseases result from insufficient financing for research of rare diseases which in many cases have common diseases as a comorbidity. Research limitations/implications: The limitations of the research analysis result from the lack of registration of patients suffering from rare diseases in Poland and from the requirements for the billing codes in the documentation of NFZ and Polish health care providers. Therefore, the study includes a sensitivity analysis. Originality/value: This is the first attempt to evaluate the total economic burden of TSC in Poland. The study indicates that the indirect costs of diseases are often overlooked in health care planning in Poland.