Oct 8, 2020

New study shows staggering costs of Inherited Retinal Diseases

Every year, the cost of inherited retinal diseases (IRDs) in Canada is $1.6 billion, a cost largely borne by affected individuals and their families.

IRDs, including retinitis pigmentosa, rod-cone dystrophy, and Stargardt disease represent a diverse group of diseases that can lead to severe vision loss and blindness. They are often progressive and degenerative and are caused by mutations in one or more of over 250 genes. Individuals with an IRD, their families, and health care providers understand the impact on well-being, mental health as well as the financial cost of living with an IRD. However, the lack of data in this area has been a barrier to the development of treatments, implementation of clinical trials, and delivery of appropriate clinical care. This is why Fighting Blindness Canada (FBC) helped commission the IRD COUNTS study, released on World Sight Day (October 8th) which brings to light the hidden costs of having an IRD and makes clear that the true impact is not being considered fully by the government as they make decisions about health care spending.

This study looked at fourteen forms of IRDs: retinitis pigmentosa, Stargardt disease, choroideremia, Best disease, Usher syndrome, X-linked retinoschisis, Leber congenital amaurosis, blue cone monochromacy, Bardet-Biedl syndrome, Leber’s hereditary optic neuropathy, achromatopsia and rod-cone, cone-rod and cone dystrophies. Using data from population-level statistics, health economics and community surveys, the study shows that the impact on the well-being and productivity of the affected individual, their families, and society is significant.

  • The largest single cost was in loss of well-being – responsible for 66% ($1.1 billion a year) of the total IRD costs. This category attempts to put a financial number on the impact that vision loss has on health and mental wellness.
  • The second highest costs were due to loss of productivity ($205 million) which captured the fact that Canadians with an IRD are 24% less likely to be in paid employment than the general population.
  • Informal carer costs which includes support received from family and friends came to $130 million a year.
  • Compared to the above large impacts, the cost to the Canadian health system was low at $38 million a year, accounting for only 2% of total costs.

This report demonstrates that the impact of having an IRD is primarily borne by the affected individuals and their families and highlights the importance of investment in critical genetic testing services and research to drive the development of treatments for this unmet need.

Dr. Robert Koenekoop, Chief, Pediatric Ophthalmology, Montreal Children’s Hospital stated that,

“This report puts a number on what we as clinicians already know-that having an inherited retinal disease has broad economic and health impacts for individuals, their families and society. As the first treatments for inherited eye diseases are starting to enter the clinic this data demonstrates the importance of ensuring that they are accessible to Canadians.”

Until recently, there have been no effective treatments. However, as we prepare for the first treatment for an IRD, the gene therapy Luxturna, to come to Canada, it is more apparent than ever that government needs to take account of the impact and costs of living with an IRD as they are deciding which treatments to approve and recommend for funding.

“This landmark study provides clear evidence on how living with an inherited retinal disease causes significant impacts on daily life, well-being, mental health, quality of life, and employment status.” says Doug Earle, President & CEO, Fighting Blindness Canada. “It reinforces what I hear from Canadians every day.  This is a message to policymakers that new sight-restoring treatments will transform lives.”


To help tell policy makers what it’s like to live with an IRD, we asked the vision loss community to share their story by completing a survey. Thank you to everyone who participated and gave voice to the impact of having an IRD in Canada.

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