Australian researchers estimate inherited retinal diseases (IRDs) are costing the country AU$781 million to AU$1.56 billion every year, while a report commissioned by Glaucoma Australia estimates glaucoma could cost the economy a further AU$4.3bn by 2025.

Professors John Grigg and Robyn Jamieson, from the University of Sydney’s Save Sight Institute, and lead author Professor Deborah Schofield, from the Centre for Economic Impacts of Genomic Medicine at Macquarie University, interviewed 94 people with IRDs, plus their carers and spouses. Linking Medicare and Pharmaceutical Benefits Schedule (PBS) data, they used a microsimulation model to calculate a lifetime cost of AU$5.2m per IRD patient, with 87% of that being societal costs, including government support and lost income. Although the remaining 13% was healthcare costs, authors noted this did not include expenses such as allied health support and vision aids.

Novartis’ Luxturna, the first ocular gene therapy available to people with RPE65 mutation-associated retinal dystrophy, has been funded in Australia since 2022. Although the treatment is Medsafe approved in New Zealand, it is still under review for Pharmac funding at the time of publication.

Glaucoma burden

Australia’s ageing population and late glaucoma diagnosis is expected to result in further costs to the Australian economy of AU$1.9bn to AU$4.3bn by 2025, according to a report by economic consultancy Evaluate. Commissioned by Glaucoma Australia, the report said the costs of ongoing treatment for glaucoma patients - including prescribed medicines, surgical procedures, acute hospitalisation, hip fracture treatment from falls (which are 10 times more likely for glaucoma sufferers), as well as the costs of long-term disability support payments, carers and early entry into aged care – far outstrip the cost of early identification of at-risk patients and making Glaucoma Australia’s Patient Support Program more widely available.

Glaucoma Australia CEO Richard Wylie told 9News, “Many more patients are falling through the cracks. We’re asking the federal government to help us.”

There is currently no government-funded awareness programme for glaucoma in New Zealand, with Glaucoma New Zealand’s work being 100% funded by donations.