Haemophilia : the official journal of the World Federation of Hemophilia · 2026
Catastrophic Health Expenditure and Health-Related Quality of Life Impairment in Severe Haemophilia A: A Patient-Level Cost-of-Illness Study From India.
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John M Joseph, Makkar Mridul, Aggarwal Himanshu, Singh Damanpreet, Ohja Soumya, Sarwan Diksha, Jyani Gaurav, Prinja Shankar
Аннотация
INTRODUCTION: Severe haemophilia A (sHA) is associated with disability, and financial burden. Even with government provided or humanitarian-aid-supported on-demand therapy, households may remain vulnerable to catastrophic health expenditure (CHE).
AIM: To estimate the patient-level costs and economic burden of sHA and to assess CHE under multiple thresholds.
METHODS: In this cross-sectional study, costs were estimated from a patient/household perspective. Clotting-factor concentrate (CFC) costs were excluded from the base case because factor VIII was provided free through government and/or humanitarian-aid-supported mechanisms. Costs were standardized to 2025 Indian Rupees using Consumer Price Index (CPI) adjustments (US$ (₹90 = US$1)). CHE was assessed at 10% and 25% of total household expenditure and 40% of household capacity to pay.
RESULTS: The median annual patient-level cost per patient, excluding CFCs, was ₹73,919 (US$821). CHE occurred in 63% of households at the 10% threshold and in 44% at the 40% capacity-to-pay threshold. Distance > 50 km From the treatment centre (aOR 6.62) and hospitalization history (aOR 10.60) were associated With CHE. Median cost per bleeding episode, excluding factor costs, was ₹4,468 (US$50; IQR ₹8,311 [US$92]). HRQoL utilities were modestly reduced and weakly correlated With costs, suggesting a financial-disability utility paradox. Sensitivity analysis identified clotting-factor price as the dominant cost driver CONCLUSION: SHA imposes substantial financial burden Despite free factor provision. Reliance on on-demand therapy may contribute to recurrent bleeding, hospitalizations, and CHE, whereas long-term replacement strategies may reduce complications and financial toxicity. Prospective comparative studies are needed in resource-constrained settings.
AIM: To estimate the patient-level costs and economic burden of sHA and to assess CHE under multiple thresholds.
METHODS: In this cross-sectional study, costs were estimated from a patient/household perspective. Clotting-factor concentrate (CFC) costs were excluded from the base case because factor VIII was provided free through government and/or humanitarian-aid-supported mechanisms. Costs were standardized to 2025 Indian Rupees using Consumer Price Index (CPI) adjustments (US$ (₹90 = US$1)). CHE was assessed at 10% and 25% of total household expenditure and 40% of household capacity to pay.
RESULTS: The median annual patient-level cost per patient, excluding CFCs, was ₹73,919 (US$821). CHE occurred in 63% of households at the 10% threshold and in 44% at the 40% capacity-to-pay threshold. Distance > 50 km From the treatment centre (aOR 6.62) and hospitalization history (aOR 10.60) were associated With CHE. Median cost per bleeding episode, excluding factor costs, was ₹4,468 (US$50; IQR ₹8,311 [US$92]). HRQoL utilities were modestly reduced and weakly correlated With costs, suggesting a financial-disability utility paradox. Sensitivity analysis identified clotting-factor price as the dominant cost driver CONCLUSION: SHA imposes substantial financial burden Despite free factor provision. Reliance on on-demand therapy may contribute to recurrent bleeding, hospitalizations, and CHE, whereas long-term replacement strategies may reduce complications and financial toxicity. Prospective comparative studies are needed in resource-constrained settings.