Burden of Inherited Retinal Dystrophies

The £558 Million burden of Inherited Retinal Dystrophies (IRDs) in the Republic of Ireland and United Kingdom is largely borne by patients and their families, according to a new study presented at the 19th EURETINA Congress. The IRD COUNTS study highlighted the £212 million cost of wellbeing and £123 million cost to productivity incurred by these conditions. It also highlighted the fact that the burden of these diseases is not appropriately captured by current mechanisms of health assessment. Deloitte Access Economics was engaged by the IRD COUNTS, a patient led multi-stakeholder consortium, to estimate the disease burden and economic impact of inherited retinal dystrophies (IRDs) in the Republic of Ireland (RoI) and United Kingdom (UK) from a societal perspective – a cost-of-illness study. This approach involved estimating the number of people with IRDs in a base period (2019) and the costs attributable to IRDs in that period. This pilot study relates exclusively to ten forms of IRDs: Retinitis Pigmentosa, Usher Syndrome, Stargardt Disease, LCA/EOSRD, Best Disease, Cone Dystrophy, Cone-Rod Dystrophy, Achromatopsia, Choroideremia and X-Linked Retinoschisis. Launching the report at the EURETINA Congress, Director of Stakeholder Engagement at Retina International Dr Orla Galvin said ‘With improvements in genetic diagnosis and with novel therapies progressing through clinical trials, IRD patient registries should be developed. This study highlights the enormous burden of care for both the individuals vision impairment and their families," said Dr Galvin The study shows that in both the ROI and UK the impact on the wellbeing and productivity of the affected individual and their families was significant. Wellbeing costs were responsible for 33.8% (€16 Million), and 38.4% (£196.1 Million) of total IRD costs in the RoI and UK respectively. Productivity costs were the second highest cost burden due to IRDs in both the RoI and the UK amounting to €9.4 Million, and £114.1 Million. Persons with an IRD in the RoI and the UK were 55.7% and 40.2% less likely to be in paid employment than the general population. In both regions IRDs resulted in a 9.6% reduction in productivity while at work.