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Inherited retinal diseases cost Australia at least $781 million a year

A NSW research team has found the total estimated lifetime cost per person with an inherited retinal disease (IRD) is $5.2 million in Australia, with societal costs such as government support and lost income for people with impaired sight and their families accounting for 87% of this figure.

The study was published in the Medical Journal of Australia on 19 June 2023 by a 10-strong team of academics, including Professor John Grigg and Professor Robyn Jamieson, from the Children’s Medical Research Institute, Save Sight Institute and the University of Sydney, as well as lead author Professor Deborah Schofield from the Centre for Economic Impacts of Genomic Medicine at Macquarie University.

They used microsimulation modelling to estimate the healthcare and societal costs of IRDs in Australia, which involved interviews of people with IRDs who had ophthalmic or genetic consultations at the Children’s Hospital at Westmead or the Save Sight Institute during 1 January 2019 – 31 December 2020, and of their carers and spouses. It also involved linked Medicare and Pharmaceutical Benefits Schedule (PBS) data.

After 94 people and 30 carers completed study surveys, the total estimated lifetime cost was $5.2 million per person with an IRD, of which 87% were societal and 13% healthcare costs.

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).

They also found annual costs were twice as high for people who were legally blind as for those with less impaired vision ($83,910 v $41,357 per person).

“IRDs are associated with substantial income losses, exceeding $44,000 per year for people aged 50–59 years. This finding was consistent with comments by survey participants that they worked less because of their IRD or had left the workforce entirely,” the study said.

“This suggests that helping people with IRDs with employment could improve societal outcomes. The impacts on both carers and spouses were also notable. For carers, lost income was largely linked with caring for children with IRDs. Although spouses might not be full‐time carers, the burden could nevertheless affect their ability to undertake paid work.”

Out‐of‐pocket health expenses were found to comprise a small portion of total health costs of people with IRDs, consistent with the lack of treatment options available (voretigene neparvovec, or Luxturna by Novartis, was approved for people with RPE65 retinopathy in 2020, the first publicly subsidised in vivo gene therapy in Australia).

They also spend substantial amounts on housing and transport modifications, and they may not be aware of all support provided by healthcare, the NDIS, and other agencies and consequently not receive appropriate support.

Overall, the estimated total annual cost of IRDs in Australia was $781 million to $1.56 billion.

“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 by cost‐effectiveness evaluations of future IRD interventions, including genomic testing and targeted therapies,” the researchers concluded.

“The increasing loss of income across life reflects the impact of IRDs on employment and career opportunities.”

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