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Elizabet Dzhambazova, Kostadin Kostadinov, Lilia Tsenkova-Toncheva, Fani Galabova, Fares Ezeldin, Georgi Iskrov, and Rumen Stefanov, from the Medical University of Plovdiv (Faculty of Public Health, Faculty of Medicine), St. George University Hospital and the Institute for Rare Diseases, have conducted a cost-of-illness study on spinal muscular atrophy (SMA) in Bulgaria. Their research assesses the economic burden of SMA from a societal perspective, analyzing healthcare costs, labor productivity losses, and the financial impact on patients and caregivers. This significant study has been published in the prestigious international journal Healthcare (Impact factor: 2.4).
Spinal muscular atrophy is a rare neuromuscular disorder that leads to progressive muscle weakness and disability. The study aimed to evaluate the annual socio-economic burden per SMA patient, incorporating direct healthcare costs, non-healthcare expenses, and indirect costs associated with caregivers’ loss of productivity.
Between 2023 and 2024, nine parents of SMA patients participated in the study, reporting detailed cost data. Among the respondents, seven children had SMA type II, and two had SMA type III. The findings revealed that the median annual socio-economic burden per SMA patient was EUR 254,968.80. The study identified high direct costs, primarily driven by drug expenses, and substantial indirect costs due to caregivers’ lost productivity as the major financial challenges. No utilization of social care and educational services was reported among the participants.
The article emphasizes the urgent need for long-term policy strategies that integrate real-world data collection, performance-based reimbursement models, and holistic support measures for SMA patients and their families. A key recommendation is the development of comprehensive social and financial support programs, as caregiver productivity loss represents a significant portion of the overall economic impact. Read the full article here.