New research has estimated the lifetime cost of inherited retinal diseases (IRDs) at AU$5.2m per person – or $781m to $1.56b per year nationally.
Most of the costs (87%) were societal, related to government support such as the National Disability Insurance Scheme (NDIS), and loss of income for people with inherited retinal diseases and their families. Health care costs accounted for only 13%, the study found.
The findings meant it was “crucial” to consider these societal costs when evaluating the cost-effectiveness of future IRD interventions, including genomic testing and targeted therapies, the study authors said.
The microsimulation modelling study was conducted by researchers from the University of Sydney and Macquarie University and published in The Medical Journal of Australia.1
Lost Income
The study concluded that the three highest cost items were lost income for people with IRDs ($1.4 million), lost income for their carers and spouses ($1.1 million), and social spending by the Australian government (excluding NDIS expenses: $1.0 million).
Annual costs were twice as high for people who were legally blind as for those with less impaired vision ($83,910 vs. $41,357 per person). The researchers concluded that helping people with IRDs with employment could improve societal outcomes.
Out‐of‐pocket health expenses comprised a small portion of total health costs, consistent with the lack of treatment options available for people with IRDs. However, they spent substantial amounts on housing and transport modifications.
Given that 87% of the overall costs were societal, largely related to lower rates of employment for both patients and carers and their greater need for social support, it is crucial that societal costs are considered in cost‐effectiveness evaluations of future IRD interventions, including genomic testing and targeted therapies, the researchers concluded.
Reference
1. Schofield, D., Kraindler, J., Tan, O., et al., The health care and societal costs of inherited retinal diseases in Australia: a microsimulation modelling study, Med J Aust II, doi: 10.5694/mja2.51997. Published online: 19 June 2023.
