RARE DISEASES AND THE COST FOR SOCIAL SECURITY SYSTEM- ESTIMATING THE SOCIO-ECONOMIC BURDEN IN ITALY
Author(s)
Nardone C1, Gazzillo S2, Migliorini R3, Trabucco Aurilio M3, Mennini FS4
1CEIS - Centre for Economic and International Studies Faculty of Economics, University of Rome, Tor Vergata, Rome, RM, Italy, 2Università degli Studi di Roma Tor Vergata, Roma, Italy, 3Italian National Social Security Institute (INPS), Rome, Italy, 4Faculty of Economics, Centre for Economic and International Studies (CEIS)-Economic Evaluation and HTA (EEHTA), University of Rome Tor Vergata, Rome, Italy
Presentation Documents
OBJECTIVES : The aim of the study was to estimate social welfare costs related to social security allowances provided by Italian law and financed by public expenditure, for patients affected by a rare disease. A group of rare diseases was analyzed, including Rare Cancers, such as Chronic Myeloid Leukemia, Rare diseases of the nervous system, e.g. Amyotrophic Lateral Sclerosis and Duchenne Muscular Dystrophy, Rare Endocrine and Metabolic Disease, such as Cystic Fibrosis, and Congenital Anomalies. METHODS : The analysis focused on two groups of disability allowances, for those who have an injury, physical or mental disability: i) social security benefits, which include incapacity pensions (for people without workability) and disability benefits (for people with reduced workability), and ii) social assistance benefits, for people that are substantially restricted in undertaking actions that would otherwise be suitable for their age, experience and qualifications. The national database of disability insurance awards was analyzed considering the period between 2009 and 2015, and the number of beneficiaries and disability costs due to rare diseases were estimated through a probabilistic model with a Monte Carlo simulation. RESULTS : Considering social security benefits, the model estimated an annual average of 3.910 beneficiaries affected by Rare Diseases, for which over € 37 million were spent every year (€ 9.500 for each beneficiary). Social assistance beneficiaries amounted to 2.836 per year, and an annual expenditure of over € 13 million was detected, equivalent to € 4.700 per beneficiary. Overall, annual average expenditure of € 50,5 million for both types of allowances was estimated, and this means around € 14.200 for each beneficiary affected by one of the rare diseases considered. CONCLUSIONS : This study is the first attempt to estimate the overall social costs induced by Rare Diseases in Italy. Results showed a significative and increasing burden for the Italian Social Security System caused by Rare diseases.
Conference/Value in Health Info
2019-11, ISPOR Europe 2019, Copenhagen, Denmark
Code
PMU19
Topic
Economic Evaluation, Health Policy & Regulatory
Topic Subcategory
Insurance Systems & National Health Care, Public Spending & National Health Expenditures
Disease
Diabetes/Endocrine/Metabolic Disorders, Musculoskeletal Disorders, Oncology, Rare and Orphan Diseases