Counting the cost of living with sight loss

Today we’re launching the results of a major research study – IRD COUNTS – a first of its kind look at the individual burden and economic impact of inherited retinal degenerations (IRDs) in the Republic of Ireland.

With the prevalence and impact of these conditions previously undocumented, IRD COUNTS, a global consortium of patient led organisations and industry, estimates the number of people with IRDs and the associated socio-economic costs in terms of well-being, productivity and employment.

Total costs attributable to IRDs in Ireland were estimated to be at least €49.5 million in 2019, comprising both economic (€33.5 million) and wellbeing costs (€16.0 million).

On top of these costs, 85% of people living with IRDs reported high levels of anxiety as a direct result of their condition, and 63% said they had depression.

And the impact is not limited to those living with the eye condition. 75% of parents with children living with an IRD also said they experienced high levels of anxiety.

Currently, the evaluation of new medicines or therapies for reimbursement in Ireland does not take well-being costs into account. The charity is presenting these new findings in the hope of opening a dialogue with the Irish Government to create a new framework for assessing value for money.

Speaking at the launch, Fighting Blindness Chief Executive Kevin Whelan said, “In many ways science can now perform miracles; but society must now decide who can avail of new treatments. A key component of that decision is the research we are launching today – the socioeconomic cost of living with an IRD.

“There is some really good news that could be realised by a simple reframing of the criteria for reimbursing major advances in precision medicine and genetics that have resulted in the emergence of exciting new drug therapies. Many of these are once-off treatments rather than a lifetime of critical illness interventions.”

Declan Meenagh (30), who was present at the event and is living with an IRD, said, “This research is really important to me because it provides the evidence that supports what we have already known for years. There is a high cost burden on both the individuals and their families living with sight loss. I hope the data generated from this study can help towards greater access to genetic and clinical services and ultimately access to approved treatments. When you go to the doctor, you want them to be able to tell you what the problem is and if there is a medical intervention that could provide a solution. I should have access to that solution whether or not my condition is rare.”

Head to our IRD COUNTS page for more information or to read the full report.