Out‐of‐pocket and catastrophic expenditure on treatment of haemophilia by Indian families

Abstract

In low-income countries, haemophilia treatment is not supported by national health services. Data on the burden of out-of-pocket (OOP) expenditure on households are unavailable from these countries. This study measured the OOP expenditure on treatment of haemophilia by Indian households. We used 20 weeks of follow-up data of 24 haemophilia A patients to estimate the annual bleeding rate for each patient and the actual OOP expenditure on treatment. We used this observational data to calculate the annual OOP expenditure on treatment if all bleeding episodes were to be treated with clotting factor concentrate. Using previously published methodology, we estimated if the expenditure was catastrophic to households or not. The observed monthly expenditure on treatment ranged from 1.5% to 12% of monthly income as not all bleeding episodes were treated with clotting factor concentrate. The estimated monthly expenditure if all bleeding episodes occurring over 1 year were to be treated would range from 21 to 314 times the monthly income of families. Nearly 68% of households would have experienced catastrophic expenditure. Treatment for haemophilia results in significant OOP expenditure for households, which is avoided by not providing standard treatment to patients. There is a need to mobilize prevention and care services for haemophilia in India and other low-income countries to mitigate the suffering due to lack of affordable treatment.

Health status of persons with hemophilia: A pilot survey from a resource-constrained Country

“…Improved access to CFC has reduced disease burden in identified PWH in this study as evidenced by a majority reporting a total of <3 hospital admissions/year. Because poor health insurance scheme,2425 low health insurance penetrance,27 and high out-of-pocket payments262728 still impact the health-seeking behavior of most people living in resource-poor countries, this may affect PWH in these areas. While some governments in resource-poor countries are yet to commence the procurement of CFC for PWH, the benefits of improved access through WFH's Humanitarian Aid Programme may be overstretched as more persons are being identified, stressing the need for our governments' involvement in the procurement of CFC for factor-deficient citizens as obtainable in most developed countries.…”

The impact of a haemophilia education intervention on the knowledge and health related quality of life of parents of Indian children with haemophilia

“…Therefore, the goal of this study was to identify the impact of an educational intervention on the HRQOL of parents, and on their knowledge about haemophilia, and management of bleeding episodes. This study was set in a typical low income setting, where utilization of clotting factor concentrate is based on the economic ability of families to purchase the treatment product . Under such circumstances, home management of bleeding is of utmost importance, as access to care may be delayed due to the distance from the residence to the HTC.…”

“…The psychosocial stressors of managing a child with haemophilia is further aggravated in low income settings due to lack of accessibility, availability and affordability of haemophilia care. Parental guilt is compounded by the inability to provide treatment due to high costs and lack of federally supported haemophilia programmes . Progressive disability arising due to parental inability to provide clotting factor concentrate is likely to be an additional stressor.…”

Assessing the current knowledge, attitude and behaviour of adolescents and young adults living with haemophilia

“…Almost all respondents feel that their condition is financially burdensome and it is in sync with previous studies. 3,7 Younger respondents did not show extreme emotional issues.…”