The Disease Burden of Systemic Sclerosis in the Russian Federation
Author(s)
Taras Khimich, MS1, Kristina Katilova, MS2, Olga Mironenko, PhD1, Natalia Sableva, MS1, Daria Tolkacheva, MS2.
1BIOCAD JSC, Moscow, Russian Federation, 2BIOCAD JSC, Saint Petersburg, Russian Federation.
1BIOCAD JSC, Moscow, Russian Federation, 2BIOCAD JSC, Saint Petersburg, Russian Federation.
OBJECTIVES: Systemic sclerosis (SSc) is a severe orphan disease and a cause of multiple life-threatening comorbid conditions, which is why it leads to increased mortality. The treatment of SSc and its complications including interstitial lung disease imposes significant financial burden on the healthcare system. Moreover, the progressive nature of the disease substantially impacts patients' health and professional lives, leading to early disability, loss of productivity, and job loss. Objective is to assess the disease burden of SSc from the Russian goverment perspective by evaluating both direct costs (treatment of the disease and its complications) and indirect costs (economic losses due to disability and premature mortality).
METHODS: Based on real-world data, the frequency of complications was determined. Using registry data and treatment patterns in the Russian Federation, the prescribing rates of specific therapies for both the primary disease and associated complications were assessed. This allowed for an estimation of direct medical costs. Economic losses due to premature mortality, as well as reduced productivity and job loss, were evaluated using the “human capital approach” over a one-year horizon.
RESULTS: The total direct medical costs for treating 21,626 Russian SSc patients amounted to $90.6 million USD per year. The analysis revealed that complication treatment accounted for most direct medical costs, while therapy for the primary disease represented only 8.7% of the total. High rates of premature mortality and disability led to annual economic losses of $290 million USD due to reduced workforce participation and productivity.
CONCLUSIONS: Lack of pathogenetic therapies for SSc has forced patients to rely on largely ineffective treatments (nearly all drugs for the primary disease are used off-label). This contributes to the development of numerous life-threatening complications, that consume most direct medical costs and ultimately result in early death. Simultaneously, patients experience significant declines in work productivity, leading to unemployment and substantial economic losses.
METHODS: Based on real-world data, the frequency of complications was determined. Using registry data and treatment patterns in the Russian Federation, the prescribing rates of specific therapies for both the primary disease and associated complications were assessed. This allowed for an estimation of direct medical costs. Economic losses due to premature mortality, as well as reduced productivity and job loss, were evaluated using the “human capital approach” over a one-year horizon.
RESULTS: The total direct medical costs for treating 21,626 Russian SSc patients amounted to $90.6 million USD per year. The analysis revealed that complication treatment accounted for most direct medical costs, while therapy for the primary disease represented only 8.7% of the total. High rates of premature mortality and disability led to annual economic losses of $290 million USD due to reduced workforce participation and productivity.
CONCLUSIONS: Lack of pathogenetic therapies for SSc has forced patients to rely on largely ineffective treatments (nearly all drugs for the primary disease are used off-label). This contributes to the development of numerous life-threatening complications, that consume most direct medical costs and ultimately result in early death. Simultaneously, patients experience significant declines in work productivity, leading to unemployment and substantial economic losses.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
EE697
Topic
Economic Evaluation, Health Policy & Regulatory
Topic Subcategory
Cost/Cost of Illness/Resource Use Studies, Work & Home Productivity - Indirect Costs
Disease
Rare & Orphan Diseases, Respiratory-Related Disorders (Allergy, Asthma, Smoking, Other Respiratory), Sensory System Disorders (Ear, Eye, Dental, Skin), Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)