Pilot Study: Republic of Ireland & United Kingdom

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In 2019, IRD COUNTS – a patient led multi-stakeholder consortium managed by Retina International, engaged Deloitte Access Economics 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.

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.

It also demonstrates that the financial burden is primarily borne by the affected individuals and their families.

In both the ROI and the UK the cost attributed to health systems was low €2.2 Million (ROI) and £25.0 Million (UK) respectively. This shows that those with a vision impairment do not engage as frequently with health care professionals as they do with those providing social and psychosocial supports. However, the societal effects and costs of IRDs that are borne outside of the healthcare system are not captured in most Health Technology Assessments (HTA), making it difficult to assess the true cost of these diseases through many national health assessment processes.