News

Oct 8, 2020

Inherited Retinal Diseases Cost the US and Canadian Economies up to $33 Billion Annually

Inherited Retinal Diseases Cost the US and Canadian Economies up to $33 Billion Annually

A study led by Retina International and a multi-stakeholder consortium of patient organizations, including the Foundation Fighting Blindness, has determined that inherited retinal diseases (IRDs) lead to an economic burden of up to $31.7 billion (US) and $1.6 billion (CAN) every year.

“While the loss of independence and emotional impact caused by blindness from IRDs are relatively well known, the economic cost of these conditions has not been well documented or studied.

Todd Durham, PhD, vice president of clinical development at the Foundation

Study results were announced on World Sight Day, October 8, 2020, an annual day of awareness held on the second Thursday of October, to focus global attention on blindness and vision impairment.

“While the loss of independence and emotional impact caused by blindness from IRDs are relatively well known, the economic cost of these conditions has not been well documented or studied,” says Todd Durham, PhD, vice president of clinical development at the Foundation. “This comprehensive study underscores the potential economic benefit of saving and restoring vision and the urgent need for treatments and cures to address these challenging conditions.”

The study determined that impacts on well-being were greatest and accounted for up to $20.043 billion (US) and $1.071 billion (CAN) of total IRD costs in the US and Canada respectively. The well-being costs were estimated using an averaged disability 
weighting. Well-being costs were higher for those people with more severe vision loss.

Productivity costs (costs relating to employment) were the second highest burden in both the US and Canada, amounting to $4.056 billion (US) and $205.1 (CAN) million, respectively.

Persons with an IRD in the US and Canada were 28.8 percent and 24.4 percent less likely to be in paid employment than the general population.

The costs attributed to health care were $2.216 billion (US) and $37.8 (CAN) million.

The study included costs for 14 of the most prevalent IRDs including retinitis pigmentosa, Usher syndrome, Stargardt disease, and Leber congenital amaurosis.

The Foundation’s My Retina Tracker Registry was used to identify participants for the US part of the study. Also, input for the study survey questions was provided by Dr. Durham, and the Foundation’s Brian Mansfield, PhD, executive vice president of research and interim chief scientific officer, and Joan Fisher, senior research specialist.

The cost of illness study was funded and supported by the following consortium of patient organizations and industry partners: Applied Genetic Technologies Corporation (AGTC), Fighting Blindness Canada, Foundation Fighting Blindness US, Janssen Global, Novartis, and Retina International. Each partner funded and assisted in the design of the project and recruitment of survey participants.