World Retina Day 2019

Dublin, Ireland, September 28th: Retina International, an umbrella organisation for patient-led groups around the world focused on supporting research for rare and age-related retinal diseases, joins the retina community around the globe for World Retina Day 2019 with the theme of ‘Vision First – Action Now’.

Across the world, visual impairment is an often invisible and undocumented condition that can bring considerable burden to the individuals and families affected. On World Retina Day 2019 the Retina community is calling for health and research systems to put ‘Vision First’ by recognising the costs associated with visual impairments and the benefits of early detection and diagnosis.

Retina International and its partners in the IRD COUNTS consortium, recently published pilot study reports on the impact of ten Inherited Retinal Dystrophies (IRDs) on the individuals and families affected in the Republic of Ireland (ROI) and the United Kingdom (UK). The pilot study demonstrated that the high economic, societal and personal costs of IRDs are primarily borne by individuals affected, and are not captured by current health assessment tools, such as Health Technology Assessments (HTA) which are used to measure the value of treatments for particular conditions.

This stark reality highlights the necessity to put ‘Vision First’ and Retina International calls for ‘Action Now’.

The £523 Million cost of ten IRDs in the United Kingdom and €49.5 Million in the Republic of Ireland is largely borne by patients and their families. The IRD COUNTS study highlights for the United Kingdom a £196.1 Million cost of wellbeing, and £114.1 Million cost due to reduced involvement in the work force; and to the Republic of Ireland a €16 Million cost of wellbeing and €9.4 Million cost due to reduced involvement in the work force due to these conditions.

Importantly, the cost of these diseases is not appropriately captured by current ways of assessing such disease needs, and, therefore services, treatments and research into IRDs are vulnerable to being underfunded. For this reason, we call for ‘Vision First – Action Now’.

IRDs represent a diverse group of progressive, visually debilitating diseases for which, until recently, there have been no effective treatments. Despite the realities of life with an IRD being felt every day by patients and those who support them all over the world, the effects of IRDs on national and global levels are not documented. Lack of information in this area is a major stumbling block for developing and getting access to clinical services and treatments, as well as developing new treatments.

There is an urgent need to gather stronger evidence on the impact of IRDs. This will support value-for-money proposals to regulatory bodies for recently approved therapies, and potentially new therapies progressing through clinical trials towards market. The information can support investment into critical genetic testing services for diagnosis, and into research that will aid progress in treatments for IRDs.

IRD COUNTS, a patient led multi-stakeholder consortium, focused on novel therapies and improved services for individuals with IRDs is managed by Retina International and has produced one of the first impact studies of its kind. IRD COUNTS engaged Deloitte Access Economics to conduct a ‘cost-of-illness’ study on IRDs in the Republic of Ireland (ROI) and the United Kingdom (UK), i.e. estimate the effect of IRDs on both everyday life and the economic impact of IRDs.

Launching the report at EURETINA 2019 in Paris, France, Director of Stakeholder Engagement at Retina International Dr. Orla Galvin said ‘With improvements in genetic diagnosis and with novel therapies progressing through clinical trials, IRD patient registries should be developed. This study highlights the enormous burden of care for both the individuals vision impairment and their families. In both the ROI and the UK the highest costs incurred due to IRDs were attributed to wellbeing and loss of productivity, yet those affected by IRD do not regularly engage with health care providers. While this is no surprise to our community, the data allows us to demonstrate clearly that the measurements used to assess the burden of vision loss need urgent review.”

Retina International is now working with the IRD COUNTS consortium to develop a programme of work to help the retina community to better understand the impact of IRDs on a global level. It will work to develop the advocacy tools needed to enable the community to act on the results in order to bring about a greater understanding of the needs of the retina community at large.

Action is also needed to improve access to early detection for conditions of the aging retina.

Age-related Macular Degeneration (AMD), Geographic Atrophy (GA) and Diabetic Eye Disease (DED) are among the most common forms of vision loss for those in their mid to late working lives globally. A diagnosis with one of these conditions can have significant impact on the independence and quality of life of those affected, on their families, on their careers, on the provision of health and social care services as well as the exchequer.

Despite support for screening of DED across many countries, few have implemented systematic screening programmes to date. AMD and GA are conditions where early detection is also critically important, however few cost benefit studies have been performed to underline the importance of implementing screening programmes for them.

Retina International is working with Retina Action, a global coalition of partners in the vision and aging space who have come together to focus on a programme of work called Essential Requirements. This ambitious programme aims to promote frameworks for targeted screening, early diagnosis and optimal care including treatment, rehabilitation and education for those affected by AMD, GA and DED. The programme will target policymakers and those who influence policy to implement their own screening and early detection programmes.

Retina Action through the Essential Requirement programme aims to develop the tools to allow the Vision and Aging community to take action now to alleviate the burden of vision impairment today and in the future.

Retina International works with member organisations and allied stakeholders around the world as well as the EU, UN and WHO to highlight vision research and healthcare and joins the call for ‘Vision First – Action Now’ on World Retina Day 2019.

For further information on IRD COUNTS Contact:

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For further information on Retina Action Contact:

Retina Action is a global coalition of vision and aging groups working to improve the lives of people affected by vision loss through aging

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