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. 2021 Jul 1:15:2855-2866.
doi: 10.2147/OPTH.S313719. eCollection 2021.

The Impact of Inherited Retinal Diseases in the United States of America (US) and Canada from a Cost-of-Illness Perspective

Jennifer Gong  1 , Simone Cheung  2 , Alivia Fasso-Opie  3 , Orla Galvin  4 , Larissa S Moniz  5 , Doug Earle  5 , Todd Durham  6 , Jason Menzo  6 , Nan Li  7 , Stephanie Duffy  7 , Jill Dolgin  8 , Mark S Shearman  8 , Chiara Fiorani  9 , Judit Banhazi  9 , Avril Daly  4
Affiliations

The Impact of Inherited Retinal Diseases in the United States of America (US) and Canada from a Cost-of-Illness Perspective

Jennifer Gong et al. Clin Ophthalmol. .

Abstract

Objective: To estimate the annual cost of inherited retinal diseases (IRDs) in the United States of America (US) and Canada from a societal perspective - including costs to the health system, individual and family productivity costs, lost wellbeing and other societal economic costs - by setting and payer. Findings will inform the need for policy action to mitigate the impact of IRDs.

Methods: The costs of IRDs were estimated using a cost-of-illness methodology, based on the prevalence of IRDs in each country. Intangible costs of reduced wellbeing were also estimated using disability-adjusted life years which were then converted to monetary values using the value of a statistical life.

Results: Using base prevalence rates, total costs attributable to IRDs in the US were estimated to range between US$13,414.0 and US$31,797.4 million in 2019, comprising both economic costs (between US$4,982 and US$11,753.9 million; 37% of total costs) and wellbeing costs (between US$8,431.7 and US$20,043.6 million; 63%). Total costs attributable to IRDs in Canada were estimated to range between CAN$1637.8 and CAN$6687.5 million in 2019, comprising both economic costs (between CAN$566.6 and CAN$2,305.7 million; 34%) and wellbeing costs (between CAN$1,071.4 and CAN$4,381.9 million; 66% of total costs).

Conclusion: The impact of IRDs in the US and Canada is substantial when considering both economic costs and reduced wellbeing. The wellbeing costs due to IRDs in the US and Canada are considerable, accounting for over 60% of total costs. Vision loss from IRDs often manifests in childhood, meaning some people live with vision impairment and blindness for their whole lives. Further research into current and emerging cost-effective therapies and interventions is required given the substantial economic burden faced by those living with vision loss.

Keywords: cost-of-illness; genetic diagnosis; inherited retinal disease.

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Conflict of interest statement

Simone Cheung, Alivia Fasso-Opie and Jennifer Gong are employees of Deloitte Access Economics and wrote the original reports from which this manuscript has been derived. Orla Galvin and Avril Daly are employees of Retina International, Larissa Moniz and Doug Earl are employees of Fighting Blindness Canada, Todd Durham and Jason Menzo are employees of The Foundation Fighting Blindness, Nan Li and Stephanie Duffy are employees of The Janssen Pharmaceutical Companies of Johnson and Johnson, Jill Dolgin and Mark Shearman are employees of Applied Genetic Technologies Corporation, and Chiara Fiorani and Judit Banhazi are employees of Novartis Pharma. The authors report no other conflicts of interest in this work.

Figures

Figure 1
Figure 1
Proportion (%) of total costs of IRDs in Canada (A) and the US (B) by cost type in 2019.
Figure 2
Figure 2
Proportion (%) of total costs of IRDs in Canada (A) and the US (B) by payer in 2019.
See this image and copyright information in PMC

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