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

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:

• genetic diagnosis
• inherited retinal disease
• cost-of-illness

Ethics

Ethical and patient consent procedures complied with all requirements set out in the Declaration of Helsinki's ethical and compliance obligations and were reviewed and approved by the Retina International Ethics and Accessibility Review Board.

Acknowledgments

Retina International would like to thank Chad Andrews (Fighting Blindness Canada) for his support in progressing this study in Canada, Mary Sunderland (Novartis Canada) for her support in reviewing this publication, and to all the patients and caregivers who gave their time freely to participate in this research. Deloitte Access Economics conducted the study on which this manuscript is based. The study was funded by Retina International. Retina International also funded the manuscript preparation.

Disclosure

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.

Additional information

Funding

Retina International engaged Deloitte Access Economics in 2020 to estimate the socioeconomic impact of inherited retinal dystrophies (IRDs) in Canada and the US.Retina International received funding and support for the project from a consortium of patient organizations and industry partners led by Retina International, who recognized the need to better understand the real-world impact of inherited retinal dystrophies (IRDs) in the United States of America (USA) and Canada. The consortium collaboration partners involved in this study were Applied Genetic Technologies Corporation (AGTC), Fighting Blindness Canada, Foundation Fighting Blindness USA, The Janssen Pharmaceutical Companies of Johnson and Johnson, Biogen, MeiraGTX, F. Hoffmann-LaRoche AG, Novartis Pharma AG, and Retina International. Each partner funded and assisted in the design of the project and recruitment of survey participants.