“The Impact of Inherited Retinal Diseases in the Republic of Ireland (RoI) and United Kingdom (UK) from a Cost-of-Illness Perspective” has been published in Clinical Ophthalmology.
This review article highlights the significant burden and impact of IRD’s on those affected and their families, and to society as a whole. Important features of this review include the outline of key findings of the recent landmark cost-of-illness reports for IRDs in the UK and ROI which employed a patient-centred approach in the design of surveys for real-world evidence data generation from the patients and parents involved, and to discuss the barriers and burdens the lack of data and awareness of IRDs have to the IRD community and to society.
This review presents data which can be used to define the economic burden of a disease, justify investment in preventive or treatment interventions, inform funding allocation and prioritisation, provide a basis for policy and planning and provide inputs for economic analyses. This paper emphasises the importance of genetic testing and genetic counselling services and the need for continued research into causative genes and development of treatments.
Although individually rare, IRD patients and their families have three major issues in common; the need for timely equitable access to genetic testing and counselling, equality in accessing employment, and a revision of the assessment process for reimbursement of therapies which currently focuses on the cost-of-illness to the healthcare system. This review demonstrates clearly that IRD patients do not frequently engage the healthcare system and as such suggests that a cost of illness from a societal perspective as outlined in this review may potentially be a better format
The evidence in this review will be very beneficial in your advocacy campaigns and demonstrates patient involvement is crucial to inform decisions in the IRD space.
A link to the published paper can be found here:
If you have any questions, or would like further information on this please contact orla.galvin@retina-international.org