Australian study tallies cost of genetic eye disease at $5.2 million per patient


Researchers totaled the societal and healthcare costs of inherited retinal diseases.

A woman wearing glasses buys medicine from a pharmacy. Image credit: ©gpointstudio –

Lifetime individual costs for those with IRDs total around $5.2 million, according to a new study. Image credit: ©gpointstudio –

Inherited retinal diseases (IRDs) cost individuals millions of dollars, and present an enormous national cost as well, according to a study conducted in Australia.1 Researchers quantified household and lifetime cost, with distinctions between categories such as healthcare costs and societal costs, such as government services and income loss. The results of the microsimulation modeling study were published in The Medical Journal of Australia. Authors included Deborah Schofield, Joshua Kraindler, Owen Tan, Natalie Hart, Rupendra N Shrestha, and Sarah West, all associated with GenIMPACT: Centre for Economic Impacts of Genomic Medicine, at Macquarie University, Sydney; and Liny Tan, Alan Ma, John R Grigg, and Robyn V Jamieson, of the Children's Medical Research Institute, University of Sydney.

Measures included annual and lifetime costs for people with IRDs, collected in interviews of patients, their carers, and their spouses. On average, the total estimated lifetime cost of IRDs was $5.2 million per person. Societal costs far outweighed the health care costs of IRDs. As categorized by the researchers, 87 percent of all costs were societal. Lifetime health care costs only totaled 13% of the per-person amount.1

Itemized results found the highest cost came from lost income for people with IRDs. The lifetime cost of lost wages was estimated at $1.4 million. At a close second was lost income for carers and spouses, which totaled a lifetime average of $1.1 million. Lifetime social support spending by the Australian government, excluding costs from National Disability Insurance Scheme (NDIS), totaled $1 million.1

Annual costs were twice as high for people who were legally blind as for those with less impaired vision,1 with blind participants totaling an annual cost of $83,910 vs $41,357 per less-impaired person. The study's authors recorded the mean age of participants as 42.1 years old, and confirmed no participants were over 80 years of age.

In addition, the authors acknowledged the financial impact of vision loss extends beyond patients with IRDs. Reduced quality of life and economic impact is also carried by family members, especially those who serve as full-time or even informal caretakers. As such, researchers calculated the per-household cost of IRDs; that figure was an estimated lifetime total of $5.6 million per household.1

The estimated total annual cost of IRDs in Australia was $830 million to $1.66 billion. The microsimulation modelling approach was used to provide a more accurate and precise reflection of income and tax factors. Healthcare costs did not include NDIS costs. Out-of-pocket health costs reflected only a small percentage of healthcare expenses – due, the study's authors said, to a lack of treatment options for IRDs.1 Rather, healthcare costs were largely comprised of housing modifications, transport modifications, and other healthcare expenses. The additional health costs may have been paid out-of-pocket because patients were not aware those health supports were available, or when and where access to social services was limited.

1. Schofield, D., Kraindler, J., et al. The health care and societal costs of inherited retinal diseases in Australia: a microsimulation modelling study. Med J Aust. Published June 10, 2023. Accessed June 21, 2023.
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