AEVR Returns to In-Person Events with Age-Related Macular Degeneration Congressional Briefing
James T. Handa, MD (Wilmer Eye Institute/Johns Hopkins University)
On September 21, AEVR partnered with the American Macular Degeneration Foundation (AMDF) to recognize September as Healthy Aging Month and the week of September 19th as International Age-related Macular Degeneration (AMD) Awareness Week 2022 hosted its fourth Research Saving Sight, Restoring Vision Congressional Briefing of 2022, entitled: Advances in the Treatment of Age-Related Macular Degeneration and Retinal Diseases.
AEVR’s Research Saving Sight, Restoring Vision Initiative is a sustained activity to educate about the value of eye and vision research and the enormous strides that National Eye Institute (NEI) funded research has made to support advancements in the diagnosis and treatment of eye and vision care.
The Briefing featured speakers James T. Handa, MD of the Wilmer Eye Institute/Johns Hopkins University, and Laura Carabello, an entrepreneur and patient living with AMD who serves as a representative for AMDF. The AMD Briefing represented the first in-person Briefing conducted by AEVR since February of 2020, due to the pandemic.
During the Briefing, Dr. Handa explained that AMD is an eye disease that can blur central vision. It happens when aging causes damage to the macula — the part of the eye that controls sharp, straight-ahead vision. The macula is part of the retina (the light-sensitive tissue at the back of the eye).
AMD is a common condition and is a leading cause of vision loss for older adults. AMD doesn’t cause complete blindness but losing central vision can make it harder to see faces, read, drive, or do close-up work. AMD is diagnosed through regular eye exams which are vital to be able to intervene early to avoid as much vision loss as possible.
Dr. Handa explained that there are two types of AMD—dry AMD which is more common, and wet AMD which although less common, usually causes faster vision loss.
AMD is a significant and growing issue in the United States and throughout the world. In 2020, Dr. Handa noted that 196 million people have AMD with that number expected to grow to 288 million people by 2040. In the United States, 15 million Americans are living with AMD with that figure expected to double to 30 million by 2050. Additionally, 200,000 cases of wet AMD are diagnosed every year in the United States.
Patients with AMD report reduced quality of life even with mild symptoms, which in severe cases can lead to patients being bedridden and requiring constant care. In addition, as much as 39% of patients with AMD suffer from clinical depression. Dr. Handa further shared that the cost of AMD has reached $4.6 billion per year in direct healthcare costs in the United States.
There is currently no effective treatment for early or late-stage dry AMD, while treatment for wet AMD has evolved over the past two decades. Prior to 2002, laser therapy was the primary method to treat wet AMD, but the development of anti-VEGF (Vascular Endothelial Growth Factor) injection therapy has been shown to be more effective without the damage that laser therapy causes to ocular tissues. Researchers continue to look for new treatment options with nearly 2,000 clinical trials currently running for dry AMD, but thus far, all clinical trials for dry AMD have failed.
Dr. Handa highlighted that thanks to existing research, we know a lot about AMD but that there is still more that needs to be learned. He shared that smoking is the strongest environmental risk factor, that the Mediterranean diet is protective, and that a Low Glycemic Index diet has also been shown to be protective. He noted that there are genetic components to the disease and that the role of epigenetics could influence the progression of AMD. Key questions that still need to be answered include identifying the relative contribution of pathologic pathways, how different pathways interact with one another, and identifying when these pathways contribute to disease.
Finally, Dr. Handa shared the importance of NEI funding in research implications for AMD. Expanding grant mechanisms with additional funding could help support more collaborative research with multiple investigators and larger-scale projects. He highlighted the importance of accessing human tissues to better study AMD similar to other repositories for diseases like Alzheimer’s and those found in Europe.
After Dr. Handa spoke, AMDF patient advocate Laura Carabello spoke about her experience living with AMD and the importance of early detection and intervention. Laura shared that she noticed small distortions in her central vision while on vacation at the beach noticing a curving of vertical deck posts. When she realized they were not actually curved, she immediately set an appointment with her eye care team including her optometrist and ophthalmologist.
By catching the symptoms early and starting treatment with her ophthalmologist with regular anti-VEGF eye injections, Laura shared that her treatment has helped to prevent further vision loss and has allowed her to continue to live independently and drive. With the cost of her treatments exceeding $15,000 per year, Laura shared that if she stops getting the injections, her AMD will result in further vision loss and significantly impact her quality of life and independence. Laura further highlighted the continued need for advancement in research to treat wet and dry AMD and brought up the promise of gene therapies and other treatments that could result in patients needing fewer injections.
With the significant prevalence and impact of AMD and the doubling expected over the next thirty years with an aging population, Dr. Handa and Laura Carabello highlighted the importance of research and the need for NEI funding.
In addition to the presentation from its speakers, AEVR expresses its appreciation to the NEI for providing a virtual reality experience to attendees interested in understanding what a patient experiences when they have AMD. Through their NEI VR app “See What I See,” attendees were able to experience AMD in different settings. The app can also be downloaded in the Apple App Store and Google Play Store for an at-home experience.
Patient Advocate Laura Carabello
AMDF President Chip Goehring speaks with Dr. Handa
AEVR was pleased to be able to host this Congressional Briefing and thanks AMDF for partnering in raising awareness about AMD. AEVR also thanks its supporters who helped make this event possible, including:
- Research to Prevent Blindness
- AmericanMacular Degeneration Foundation (AMDF) (partner and lunch sponsor)
- Association for Research in Vision and Ophthalmology (ARVO)
- Genentech (event support)
- Novartis (event support)