DUBLIN, October 13th, 2022: On World Sight Day 2022, Retina International is presenting data from a report on its study into the Socio-economic Impact of late-stage Age-related Macular Degeneration (AMD) in Bulgaria, Germany, and USA.
The study provides an insight into the disease burden on patients and caregivers living with these conditions, as well as society at large. Three countries were selected to represent a range of different costs and experiences; the USA has the largest population of individuals impacted by a form of late-stage AMD, while Germany and Bulgaria represent developed and developing economies within the EU, respectively.
AMD is an eye condition that causes gradual decline of central vision and in advanced stages can impact one’s ability to perform activities of daily living such as reading, driving, and facial recognition. Advanced or late-stage AMD is a leading cause of irreversible blindness and visual impairment in the world and can be classed into two categories: neovascular/wet AMD (nAMD) or dry AMD, often referred to as Geographic Atrophy (GA).
Economic Impact
The study estimated costs related to direct medical costs, indirect medical costs, productivity, and wellbeing using the mid-value estimate prevalence rates. Topline data from this study estimates that:
USA
In the USA, the total economic impact of late-stage AMD was estimated at 43.1 bn EUR (49.1bn USD) comprised of:
- 23.9 bn EUR (27.5 bn USD) being attributed to nAMD, and;
- 19.2 bn EUR (22.06 bn USD) attributed to GA.
The majority of costs for both conditions could be attributed to productivity i.e., job loss or job reduction due to the condition: 46 % of the total figure for nAMD and 36 % for GA.
Germany
In Germany, the total economic impact of late-stage AMD was estimated at 7.6 bn EUR, with:
- 3.9 bn EUR being attributed to nAMD, and;
- 3.7 bn EUR attributed to GA.
Bulgaria
Bulgaria, a developing economy in the European Union, was estimated to have 449.4 m EUR (879.5 m BGN) associated with late-stage AMD out of which:
- 228.9 m EUR (447.5 m BGN) was associated with nAMD and
- 220.5 m EUR (431.5 m BGN) was associated with GA.
In both European countries, and across both conditions, wellbeing costs accounted for the largest proportion. Germany reported that 48% of costs associated with nAMD were attributed to wellbeing, while for GA this figure rose to 87%. In Bulgaria, 64% of costs associated with nAMD and 87% of costs associated with GA were attributed to wellbeing.
Lived Experience of Patients and Caregivers
In addition to economic impact, this study highlighted the lived experience and challenges of patients and caregivers living with nAMD and GA. Of all patients who participated in the study, it was reported that 44% experienced anxiety, and 41% experienced depression. Mr. Franz Badura, Chair of Retina International highlighted that “It is essential that more attention be given to the treatment of wellbeing associated with AMD. Better education about the value of eye-care services for older people, as well as accessible support resources for maintaining quality of life with the condition are critical to improving the wellbeing and societal inclusion of affected individuals.”
In relation to productivity, 26% of respondents living with late-stage AMD reported job loss and 55% reported job reduction due to their condition. Further to this, 15% of caregivers reported having to reduce their working hours due to caring responsibilities. Dr. Petia Stratieva, MD, PhD., Policy Manager at Retina International attests that “The effect AMD has on an individual’s daily living leads many to give up their careers due to declining vision. With retirement ages increasing, it is imperative to promote public policy actions that eliminate age-related discrimination, and secure preventive care to maintain maximum functional capacity of individuals.”
These data highlight critical gaps in support and care to those living with late-stage AMD and their caregivers. Ms. Avril Daly, CEO of Retina International says on the issue: “Visual impairment in older adults leads to functional limitation, poor psychological health, challenges in the management of medication, worse overall health outcomes, and increased health care spending. Promoting the visual health of older people is not only a public health priority, but also an economic concern. Another significant burden that is rarely considered is that of the caregivers, often a family member who may need to give up or curtail their work and social interactions in order to support their relative living with AMD”
Call to Action
To ensure the ageing retina community receives care that prevents avoidable blindness, and to reduce the associated negative impact of AMD on both those affected and their caregivers, Retina International calls upon governments to:
- Develop, and where developed, implement early detection programs for Age-related Macular Degeneration.
- Promote public policy actions that eliminate age-related discrimination
- Prioritise providing accessible, affordable eye care and support resources to older adults.
- Promote the inclusion and wellbeing of the ageing vision loss community.
For More Information
The full report on the socio-economic impact of age-related macular degeneration (AMD) in Bulgaria, Germany and USA is available for download at the following link:
https://retina-international.org/amd-impact-cost-of-illness-study/
To learn more about Retina International’s policy actions on conditions of the ageing retina, visit our Retina Action website action.retinaint.org
For further information or queries, please contact avril.daly@retina-international.org.
End of Release
About Retina International
Retina International is a global umbrella organization for patient-led charities and foundations who support research into rare, genetically inherited and age-related retinal conditions.
RI believes that education leading to participation is a key driver in successful innovation.
As a highly networked community, our objective is to promote retina research through the engagement and education of our growing patient community and by developing robust evidence-based advocacy tools to bring about positive change. We believe in structured collaboration inclusive of all stakeholders in order to address the unmet needs of patients affected by retinal disease, by employing a professional approach to all that we do.
For more information, visit our website: www.retina-international.org
Acknowledgements
Retina International (RI) would like to thank sincerely our members Retina Bulgaria, PRORETINA Deutschland e.V., and Foundation Fighting Blindness (US), in addition to the local clinical liaisons for their collaboration and support on this project. RI would also like to pay acknowledgement to the contribution of Ernst & Young (EY), whom RI engaged to undertake an analysis of these data and compile the report.
The report has been compiled thanks to the financial support of:
- Alexion, Astra Zeneca Rare Disease Pharmaceuticals
- Apellis Pharmaceuticals, Inc.
- Novartis Pharma AG
- Hoffmann La Roche Ltd
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