Cost of Illness Study: US & Canada

IRDs are rare diseases, and the number of people affected by these conditions, and their impact on the greater population has remained largely undocumented – both at a national and global level.

In addition to vision loss, IRDs can affect patients, their families, and caregivers in a number of ways – including financial burden and poorer wellbeing. However, there is a lack of holistic data that represents these far reaching impacts.

This in turn hinders the development and funding of supports, clinical services, treatments, and clinical trials for IRD patients.

To address the large data gap surrounding the impact and occurrence of IRDs, Deloitte Access Economics was engaged by Retina International, together with a consortium that included patient-led organisations and industry partners.

The study carried out aimed to estimate the societal disease burden, and economic impact of IRDs in the United States of America (USA) and Canada – a cost-of-illness study. This study collected data from patients in the form of surveys.

Here are some key data:

  • IRDs in the USA and Canada resulted in a socio-economic burden of up to US $31.7 billion and CAN $1.6 billion respectively in 2019.
  • Two thirds of these costs were associated with wellbeing costs; up to US $20 billion (63%) in the US, and CAN$1 billion (66%) in Canada.
  • Productivity costs (cost relating to employment) were the second highest burden in both the USA and Canada, amounting to US $4.056 billion (14%), and CAN $205.1 million (13%), respectively.
  • The third highest cost was attributed to informal care – 8% of the total cost in the US, and 10% in Canada. This accounts for assistance with domestic tasks such as cooking and cleaning, organising and administering medication, shopping, transport, and monitoring wellbeing.


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