The unmet need in geographic atrophy
The availability of treatment options that prevent atrophy progression is one of the most important unmet needs in geographic atrophy.1
Patients & caregivers
Geographic atrophy has a notable disease burden for patients and for those who care for them. The loss of vision can be traumatic and impacts many aspects of a patient’s financial and social life, including relationships, hobbies and daily activities.2
Geographic atrophy is a leading cause of legal blindness and is estimated to account for up to 20% of all cases attributed to AMD.3,4
Prevalence of late AMD is expected to increase further with the aging population, and it is predicted there will be over 18 million cases globally by 2040.5
DRIVING
READING
TRAVELLING
HOBBIES
WORK
Devastating emotional and financial impact on both patients and their caregivers, and a substantial negative impact on an individual’s ability to perform essential and enjoyable daily activities.6,7
Podcast
Listen to Bill’s story about living with geographic atrophy
Get to know Bill and his inspiring story. In this podcast, Bill Best shares his story about how geographic atrophy affected his life. Bill Best was born in 1952 and lives in England. He was first diagnosed with age-related macular degeneration (AMD) in 1997 which developed into advanced dry AMD by 2009.
“My first thought was one of devastation.
My imagination just ran riot. All questions were going through my head; will I go blind?
If so, when will the lights go out?”
Bill Best
A new survey of those living with geographic atrophy reveals that this disease comes with a large emotional burden and loss of independence.
The global Geographic Atrophy Insights Survey (GAINS) (N=203), conducted by The Harris Poll and sponsored by Apellis Pharmaceuticals, found that for nearly 7 in 10 (68%) of people living with GA, the impact of vision decline on their independence and quality of life is worse than they expected,
(35%) withdrew from their social
lives due to vision loss
agree the impact of vision decline on quality of life (QoL) and independence is worse than they expected
(77%) agree their vision was impacted
faster than they expected
of those who have difficulty recognising faces feel frustrated when they cannot recognise the faces of friends or family
of people living with GA agree that prior to their diagnosis, they attributed their vision loss to a natural part of ageing
wish they had understood the
irreversible impact geographic atrophy
would have on their vision
Living with geographic atrophy can take a deep emotional toll. Of those who have difficulty recognising faces due to vision loss (n=61), 90% feel frustrated when they cannot recognise the faces of friends or family.* Furthermore, out of all respondents, ~1 in 3 (35%) withdrew from their social lives because of geographic atrophy. These hardships also often come as a surprise, as most (77%) people living with geographic atrophy agree that the impact on vision is happening faster than they anticipated.
People living with GA report feeling:
Despite these challenges, those living with geographic atrophy wish there were more educational materials for patients and caregivers (86%). There is a meaningful opportunity to empower them by providing more support as they navigate a future living with geographic atrophy.
want more information and options about geographic atrophy to feel empowered to take control of their disease
wish there were more educational materials available for patients and caregivers
Information and supportive materials for patients living with geographic atrophy and their caregivers
dryAMD.eu is a website dedicated to providing information and support
to those affected by geographic atrophy (GA) or advanced dry age-related macular degeneration (AMD), as well as those who care for them.
The website has been created with patients living with blindness to ensure that it truly meets the needs of people with age-related macular degeneration.
The global Geographic Atrophy Insights Survey (GAINS) was sponsored by Apellis and conducted by The Harris Poll between October 12 and December 10, 2021. To accommodate visually impaired respondents, the survey was conducted online and by telephone among 203 participants aged 60 or over (mean age 70 years) residing in the US, UK, France, Germany, Italy, Netherlands, Sweden, Canada and Australia who self-reported that they had been diagnosed with age-related macular degeneration (AMD) and have dry AMD in at least one of their eyes. They must also have indicated that they had advanced atrophic age-related macular degeneration or advanced atrophic AMD, advanced/late/late-stage dry age-related macular degeneration or advanced dry AMD, or geographic atrophy (GA) in one or both of their eyes. Included patients must have been currently experiencing at least 3 GA symptoms and currently do/used to do/or have been suggested by an eye care professional but have not done at least one of the following: take a high-dose formulation of antioxidant vitamins and minerals, stop smoking, maintain a healthy weight and exercise regularly, choose a healthy diet, manage other medical conditions, have check-ups of the retina regularly, or wear sunglasses with UV protection. Included patients must not have been diagnosed with glaucoma, Stargardt disease or dementia, or be receiving regular injections into the affected eye every 4 to 6 weeks.
References
- RIQUET, D. (n.d.). Parliamentary question | Geographic atrophy as an unmet medical need in the field of ophthalmology | P-000876/2022 | European Parliament. [online] www.europarl.europa.eu. Available at: https://www.europarl.europa.eu/doceo/document/P-9-2022-000876_EN.html. Accessed July 20, 2022.
- Sarda, S.P. et al. (2021). Humanistic and Economic Burden of Geographic Atrophy: A Systematic Literature Review. Clinical Ophthalmology, Volume 15, pp.4629–4644. doi:10.2147/opth.s338253.
- Gehrs, K.M. et al. (2006). Age-related macular degeneration—emerging pathogenetic and therapeutic concepts. Annals of medicine, [online] 38(7), pp.450–471. doi:10.1080/07853890600946724.
- Biarnés, M. et al. (2011). Update on Geographic Atrophy in Age-Related Macular Degeneration. Optometry and Vision Science, 88(7), pp.881–889. doi:10.1097/opx.0b013e31821988c1.
- Wong, W.L. et al. (2014). Global prevalence of age-related macular degeneration and disease burden projection for 2020 and 2040: a systematic review and meta-analysis. The Lancet Global Health, 2(2), pp.e106–e116. doi:10.1016/s2214-109x(13)70145-1.
- Sivaprasad, S. et al. (2019). Living with Geographic Atrophy: An Ethnographic Study. Ophthalmology and Therapy, 8(1), 115–124. https://doi.org/10.1007/s40123-019-0160-3.
- Jones, D. et al. (2022). MOSAIC: A qualitative study of the clinical, humanistic, and financial burden of geographic atrophy (GA) among patients. Investigative Ophthalmology & Visual Science, [online] 63(7), pp.4217-A01454217-A0145. Available at: https://iovs.arvojournals.org/article.aspx?articleid=2781790.
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