OBJECTIVES: In countries with tax-based health financing such as Malaysia and Brunei, the proportion of catastrophic health expenditures is extremely low as healthcare are provided free of charge or at highly subsidized rate. A qualitative inquiry is a complementary approach to studying disease specific out-of-pocket (OOP) payments and household financial hardship. To illustrate, we present the findings of OOP analysis and qualitative inquiry with the objective to investigate the burden of thalassemia on families in Malaysia.

METHODS: Cross-sectional surveys of 199 households with beta-thalassemia major patients from Pahang, Sabah and Terengganu, followed by 20 semi-structured interviews in Sabah.

RESULTS: The median OOP payment per inpatient care was USD17(41), the median annual OOP payment was USD39(376) and the proportion of CHE was 0.5%. The qualitative inquiry revealed a gloomier perspective. Respondents talked about family sacrifices, borrowings and selling off assets, parents’ guilt of having to prioritize the sick child and forgotten welfare of siblings, missed treatments, poor access to care, constant hunger, unpaid bills and never-ending financial despair.

CONCLUSIONS: Humanizing the economic burden of thalassemia on families in Malaysia was made possible via a qualitative inquiry. The burden of thalassemia extends beyond monetary value, with incessant suffering made worse by the sick cycle of disease and poverty.