Cost of IRDs

Costs of IRDs

Costs can come under many different categories but can mainly fall into three:

  1. Direct costs
  2. Indirect costs
  3. Intangible costs.


Direct costs can be thought of as expenses directly related to an illness. These include medical costs, which are the cost of the resources needed to treat the illness, and non-medical costs which are the costs caused by the disease but are not the medical costs. An example of a non-medical direct cost would be supporting services, home care or travel expenses.

Indirect costs, however, are defined as ‘the value of lost output caused by reduced productivity due to illness or disability’. These include financial supports for income, accommodation, disability benefits; productivity losses such as loss of work, part-time work and absence from work for health reasons; years of life lost, and so-called ‘dead-weight losses’. In economics, dead-weight losses are due to market inefficiency but in relation to health issues, they can be described as excess financial burdens on society.

Intangible costs describe the burden of the illness on affected individuals, their caregivers and families Intangible costs and include loss of wellbeing and loss of quality of life which can be recorded using questionnaires completed by patients and their caregivers. They can be difficult to quantify and so are not usually given a monetary value. They can be described by disability adjusted life years (DALYs), a summary measure used to give an indication of overall burden of disease. The loss of the equivalent of one year of full health is represented by one DALY. The burden of diseases that cause premature death, but little disability, can be compared to the burden of diseases that do not cause death but do cause disability, such as blindness.

Indirect Costs

The greatest costs due to vision loss are caused by productivity losses in patients as well as their carers. Recurrent hospitalisations and the use of medical or supportive services contributed to significant economic costs. Surprisingly, a significant amount of the directs costs are not due to eye-related medical care, but are related to falls, a reduced ability to manage other illnesses and psychological issues related to vision loss. While intangible effects are difficult to quantify, the small number of studies that have researched them showed a large economic impact due to effects such as loss of independence, quality of life and excess morbidity. All types of costs that arise due to vision impairment need to be taken into account in economic evaluations of the impact of vision loss and of interventions to alleviate these costs both on the individual and on society at large.

To date, most studies on the impacts and costs of blindness have encompassed all forms of blindness, including those related to aging. The specific impacts and costs of inherited retinal conditions, such as LCA, that can have effects from birth are not known. This is a significant gap in the information required to adequately address the needs of individuals affected by IRDs at social and healthcare levels currently. With new treatments coming onto the market that are considered to be expensive, the complete picture of the extent of medical, economic and social effects of IRDs is vital to ensure appropriate access.

A review article titled “The Impact of Inherited Retinal Diseases in the Republic of Ireland (ROI) and the United Kingdom (UK) from a Cost-of-Illness Perspective” has been published and highlights the burden of IRDs on individuals,  their families and society as a whole.  This review article outlines the findings of two landmark Cost-of-Illness reports carried out in the Republic of Ireland (ROI) and United Kingdom (UK), employing a patient-centred approach to generate real-world evidence and to discuss the barriers and burdens the lack of data and awareness of IRDs have to the IRD community and to society.

A link to the published paper can be found below:

The Impact of Inherited Retinal Diseases in the Republic of Ireland (ROI) and the United Kingdom (UK) from a Cost-of-Illness Perspective