A new study released by Fighting Blindness Canada and Retina International places the total cost of illness from vision loss associated with inherited retinal diseases (IRDs) in Canada at $1.6 billion– significantly higher than previously estimated. The study’s proponents say these costs, which are expected to increase dramatically in the years ahead, underscore the urgent need for Canada to support research and new treatments for IRDs.

The $566 million price tag for vision loss includes $38 million in direct health-related costs and $538 million in indirect costs, such as lost productivity and earnings, rehabilitation, and assistive devices. Persons with an IRD in Canada were 24.4% less likely to be in paid employment than the general population.

The study is also the first to attribute a value to the human toll of vision loss on Canadians with IRD’s. This burden of disease adds a further $1.1 billion to the overall cost of IRDs.

 “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.

This study demonstrates that the impact of having an IRD is primarily borne by the affected individuals and their families. However, the societal effects and costs of IRDs that are borne outside of the healthcare system are not captured in most drug reviews or health technology assessments, making it difficult to assess the true cost of these diseases. This report goes some way towards filling this gap but it is clear that more work is needed to both understand and account for the burden of vision loss on Canadians as well as the importance of investment in critical genetic testing services and research to drive the development of treatments for this unmet need.

Click HERE for the full press release.