Costs associated with hereditary haemochromatosis in Australia: a cost-of-illness study

Objective: The aim of the present study was to assess health sector, other sector and time-related (productivity) costs associated with hereditary haemochromatosis from societal, government and patient perspectives for the Australian setting.

Methods: A national web-based survey of people with haemochromatosis was conducted between November 2013 and February 2015. Participants completed a health survey and resource use diaries. Costs were calculated using a bottom-up approach and calculated in 2015 Australian dollars.

Results: Cost data were available for 157 participants. From a societal perspective, the estimated annual cost of haemochromatosis was A$274 million. The mean (95% confidence interval) cost for symptomatic patients was almost threefold greater than that of asymptomatic patients (A$10 030 (7705–12670) vs A$3701 (2423–5296) respectively). Health sector and productivity-related time loss were the main cost drivers. When extrapolating costs to the Australian population level, asymptomatic haemochromatosis accounted for higher costs than symptomatic haemochromatosis (A$183 million vs A$91 million), reflecting the low clinical penetrance estimate used. Total costs increased when higher clinical penetrance estimates were used.

Conclusion: The present cost-of-illness study, the first to be published for haemochromatosis, found that although costs were substantial, they could be decreased by reducing clinical penetrance. Development of cost-effective strategies to increase early diagnosis is likely to result in better health outcomes for patients and lower total costs.