Treating haemophilia results in a significant out-of-pocket expenditure for Indian households,a first of its kind study in the country,by University of Punes School of Health Sciences has found. This study measured the out of pocket expenditure and found it to be a catastrophic one in nearly 68 per cent of households.
With little data on the burden of out-of-pocket expenditure by households from low income countries,the study used 20 weeks of follow-up data of 24 patients families from the city and found that irrespective of economic groups,treating haemophilia could result in catastrophic expenditure. Catastrophic expenditure would mean spending on haemophilia treatment in excess of 40 per cent of the households capacity to pay ,Dr Anita Kar,associate professor,Interdisciplinary School of Health Sciences,UoP told Newsline.
The study found that families spent 1.5-12 per cent of their monthly income on haemophilia treatment,using first aid to control bleeding,rather than replacement therapy with clotting factor concentrate.
The sample size may be small but the findings are significant,Kar said. Haemophilia is a genetic disorder that affects the bloods ability to clot.
While there is no cure,it can be treated with injections of clotting factor medication. However the injections cost between Rs 16-18 per unit and depending on the bleeding episodes,the cost can range up to Rs 3-4 lakh per year,Dr Dr K Ghosh,President of the Haemophilia Federation of India and Director of the National Institute of Immunohaemotology,KEM hospital,Mumbai told Newsline. The estimated monthly expenditure if all bleeding episodes occur over a year were to be treated would range from 21 to 314 times the monthly income of families.
Nearly 68 per cent of households would have experienced catastrophic expenditure,Kar said. Estimating this expenditure is methodologically challenging in developing countries due to lack of completeness of hospital records,as patients may not seek treatment due to affordability issues,Kar said.
Patients families were observed for 20 weeks on bleeding episodes and expenditure incurred for each patient. Data was used to estimate the costs that would be incurred if all bleeding episodes experienced over a year were to be treated.
Household expenditure was calculated from one year recall of expenditure on durable items (clothing,bedding,footwear,furniture,jewellery and utensils) and one month recall of expenditure on non-durables (food items,fuel and electricity),miscellaneous items and health care costs for other family members.