F097 An economic and social productivity cost analysis of Huntington’s disease in Australia

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Background Huntington’s disease (HD) requires complex intervention for decades. The burden on the Australian public is unknown. Aims This study aimed to explore the productivity losses, social burden, and cost of HD in Australia. Methods We used the Enroll-HD database to assess the health services costs, productivity losses, and carer quality of life associated with HD in Australia, N = 562. Disability support information in Western Australia was collected through medical record review. Descriptive statistics were used to calculate an average annual per-person cost in 2023 Australian dollars. Results The average cost of Australian HD service provision in 2022/2023 was $AUD61,110 per-person (range: $0 - $2,361,217). A total of 16.86 years of work productivity was lost due to HD. Mental ill health was experienced by 94.3% of the cohort. Carer self-reported quality of life showed emotional wellbeing was moderately impacted. Indirect costs and division of public and private expenditure were not available. Conclusions The economic cost, neuropsychiatric burden, and loss of productivity was higher than other similar neurological conditions such as Parkinson’s disease. Service providers and funding bodies must account for long-term provision of disability support to Australians at-risk for HD. Further research into indirect costs is required. The findings have policy implications for HD prevention measures. In Australia, the average out-of-pocket cost of preimplantation genetic diagnostic invitro fertilisation (PGD IVF) is $6,600 per cycle. Medicare reimburses approximately $900 per cycle. Reimbursement of the entire PGD IVF cost would remove financial restrictions for those seeking to prevent incidence of HD.

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