Newswise — Rockville, Md. – Data being presented at the 2021 virtual meeting of the Association for Research in Vision and Ophthalmology (ARVO) highlights the significant impact of inherited retinal diseases (IRD) in the United States and Canada.

Continuing their 2019 cost-of-illness of IRD studies in the Republic of Ireland and the United Kingdom (IRD Counts), Retina International sought to expand on the limited data illustrating the impact of IRDs from a socio-economic perspective. Given their larger population, data from the U.S. and Canada was a natural next step. In addition to the familial burden exposed in the study, the team noted that current assessment models of therapies do not appropriately reflect how little people living with IRD interact with health systems compared to the total cost burden of living with an IRD.

“People living with an IRD interact with health systems at a very low level compared to the total cost burden of living with an IRD. The Cost of Illness study in the United States and Canada clearly demonstrates that current assessment models for reimbursement of therapies do not appropriately reflect this and therefore need urgent review,” says Avril Daly of Retina International.

Notable results included:

  • Productivity losses were the second highest burden in both the U.S. and Canada, amounting to US$4.056 billion, and CAN$205.1 million
  • Persons with an IRD in the U.S. and Canada were 28.8% and 24.4% less likely to be in paid employment than the general population
  • In the U.S. and Canada IRDs resulted in a 0.3% and 1.4% reduction in productivity while at work, respectively. The health systems cost in both regions was low at US$2.216 billion and CAN$37.8 million, respectively.

Retina International and its partners developed the North American-based study, “to be utilized and referred to by populations across the globe to support access to services and care pathways, access to clinical trials and treatments. Most importantly, it highlights the need for continued research into IRDs to understand disease pathways and to find treatments and cures,” says Daly.

 

 

Abstract title: Cost of Illness of Inherited Retinal Disease in the USA and Canada

Presentation start/end time: Tuesday, May 4, 2021, 2:15 – 4pm ET

Presentation number: 3546345

 

 

 

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The Association for Research in Vision and Ophthalmology (ARVO) is the largest eye and vision research organization in the world. Members include approximately 10,000 eye and vision researchers from over 75 countries. ARVO advances research worldwide into understanding the visual system and preventing, treating and curing its disorders. Learn more at ARVO.org.