Apellis Pharmaceuticals, Inc. has recently announced results from a global survey conducted by The Harris Poll, which found that living with geographic atrophy (GA) can cause a substantial emotional burden and impact on independence. GA is a leading cause of blindness that affects more than 5 million people worldwide, including one million people in the United States.
The Geographic Atrophy Insights Survey (GAINS) was conducted among 203 adults with GA across nine countries. The survey reveals that nearly seven in ten GA patients (68%) believe the impact on their independence and quality of life due to their visual decline is worse than they expected. More than two in three patients (70%) rely on a caregiver for support, and a majority feel the disease negatively affects aspects of everyday life like the ability to read (96%), drive (95%), and travel (88%). Additionally, people living with GA are experiencing emotional hardships, feeling anxious (46%), powerless (39%), and frustrated (33%). Approximately one in three (35%) have recently withdrawn from their social lives because of their disease.
“For people living with GA, the steep emotional burden and the devastating impact on independence caused by vision loss are far too often overlooked due to the absence of treatment,” said Nancy Holekamp, MD, director of retina services at the Pepose Vision Institute, St. Louis, Missouri. “This survey provides important insights that will hopefully encourage early and ongoing discussions between patients and their ophthalmologist about managing both the physical and emotional outcomes of this disease.”
People living with GA also have misconceptions related to their disease with three out of four (76%) attributing their loss of vision to a natural part of aging prior to their GA diagnosis. The findings reinforce an opportunity for broad GA-specific education, as 91% wish to be empowered with more information and options to take control over their disease.
“Quality of life is slipping away much faster than anticipated for an overwhelming number of people with GA, so it is important for patients to know they are not alone. There is a strong community of GA patients around the world who are navigating these same emotional hardships,” said Stacy Pagos Haller, president and chief executive officer of the BrightFocus Foundation. “Our hope is that these results spark a public dialogue about the heavy toll of GA on patients’ wellbeing and encourage people to actively advocate for their eye health.”
“We conducted this first-of-its-kind survey to better understand the profound social and emotional impact of GA beyond visual decline,” said Federico Grossi, MD, PhD, chief medical officer at Apellis. “There is a meaningful opportunity to empower and support people living with GA, and we remain committed to ensuring the patient voice is represented in our work every step of the way.”
For more information on geographic atrophy, please visit the BrightFocus Foundation website.
About the Geographic Atrophy Insights Survey (GAINS)
The global Geographic Atrophy Insights Survey (GAINS) was sponsored by Apellis and conducted by The Harris Poll between October 12 to December 10, 2021. To accommodate visually impaired respondents, the survey was conducted online and via the telephone among 203 participants aged 60 or over (mean age 70 years) residing in the United States, United Kingdom, France, Germany, Italy, Netherlands, Sweden, Canada, and Australia who self-reported that they have 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 have 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.
Read the full press release from Apellis.