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.

Gene-Based Therapeutics for Inherited Retinal Diseases

“…IRDs are a heterogeneous group of orphan eye diseases with a prevalence estimated at between 0.06 and 0.2% (Galvin et al, 2020;Gong et al, 2021), with a global IRD caseload in the range of 5-10 million individuals (Hanany et al, 2020). Onset is highly variable, ranging from the first year of life all the way to late adulthood, and presenting symptoms can vary from nyctalopia and photosensitivity to profound vision loss with early-onset nystagmus.…”

“…The societal burden of IRDs has been quantified in recent studies that investigated the socioeconomic impact of IRDs in the US and western Europe. Despite their scarcity, the societal cost of IRDs in the United Kingdom and United States were estimated at more than USD 700 million and USD 30 billion, respectively (Galvin et al, 2020;Gong et al, 2021). Much of this cost is presumably due to the profound impact that IRDs have on the economic productivity of working-age individuals, where improvements in community eye screening has seen IRDs overtake diabetic retinopathy as the leading cause of blindness among working age adults in some developed nations (Hanany et al, 2020;Heath Jeffery et al, 2021).…”

Zebrafish models of inherited retinal dystrophies

“…These diseases can include Usher syndrome, in which RP is associated with hearing loss, Joubert syndrome (JBTS) and Bardet-Biedl syndrome (BBS), which are two ciliopathies with systemic effects, and Senior-Loken syndrome, which presents with RP and kidney disease. It was recently estimated that approximately 5.5 million people worldwide (~1 in 1380 people) are afflicted by IRDs [2] and this has a significant cost on both individuals and society. The financial impact of IRDs associated with economic and wellbeing costs was estimated to range between $13-31 billion in the United States and between CAN$669-1638 billion in Canada for 2019 [3] .…”

“…It was recently estimated that approximately 5.5 million people worldwide (~1 in 1380 people) are afflicted by IRDs [ 2 ] and this has a significant cost on both individuals and society. The financial impact of IRDs associated with economic and wellbeing costs was estimated to range between $13–31 billion in the United States and between CAN$669–1638 billion in Canada for 2019 [ 3 ] .…”

The State of Patient-Reported Outcome Measures for Pediatric Patients with Inherited Retinal Disease

“…IRDs underlie an expressive economic and psychosocial burden. In 2019 alone, IRDs contributed approximately US $14,685.1–37,003.8 million in economic and well-being costs in the USA and Canada [ 1 ]. After deciphering the genetic basis of many IRDs, gene-specific therapies are being developed to restore some sight and slow or halt disease progression.…”