Mobilizing Action on AMD: World Sight Day Policy Recommendations  

What is Action4AMD? 

Action4AMD is a new coalition driven by Retina International (RI), united by a common cause: addressing the needs of individuals living with AMD, particularly those living with the advanced from of the disease such as wet age-related macular degeneration (wAMD) and Geographic Atrophy (GA) and their caregivers. These AMD Policy Recommendations embody the culmination of an 8-month long effort by the AMD Policy & Advocacy Taskforce, a working committee  comprising of patient representatives, medical advisors, and RI members from across the globe. Our recommendations call for the establishment of a global policy framework, standardized screening programs, intensified research efforts, regional cooperation for treatment accessibility, rehabilitation services, enhanced social support, improved data utilization, mental health initiatives, workforce integration, and meaningful community involvement. Together, these recommendations chart a proactive course for policy and advocacy over the next decade to safeguard the well-being of AMD patients and caregivers. 

Why Now? 

RI is concerned that the European policy framework currently overlooks the needs of individuals with AMD and GA, leading to fragmented advocacy efforts. This deficiency obstructs the development of robust regional and national strategies in alignment with the UN 2030 agenda and the UN decade for healthy aging. 

Through the Action4AMD Campaign, we are bridging this gap by raising awareness, presenting a united message to MEPs, candidates, political parties, and European parliament groupings in Brussels and Member States. We aim to forge a coalition of patient advocates who will help shape and influence policies, draft a manifesto for the European Parliamentary Elections in June 2024, and support recommendations from the RI Cost of Illness Study. This manifesto is just the first step in our programme for global advocacy action that will launch in June 2024.

Long Term Goal 

Following the inaugural Action4AMD campaign, RI will continue its collaboration with this coalition to establish a Special Interest Group for all retinal diseases in the new parliament. This ensures that we keep advocating for and supporting those affected by AMD and related conditions. Join us in taking proactive steps for a brighter future on this World Sight Day. 

RI AMD Policy & Advocacy Recommendations: 

RECOMMENDATION 1: 

Pioneer a comprehensive global aging eye policy framework aligned with the UN 2030 agenda for sustainable development, with ongoing oversight by an international multistakeholder group. 

RECOMMENDATION 2: 

Launch standardized screening programs at regional and national levels for early AMD detection, deploying innovative technologies for accuracy. 

RECOMMENDATION 3: 

Prioritize research to include basic, translational, clinical, and social care studies to develop affordable AMD treatments. 

RECOMMENDATION 4: 

Champion regional collaboration to ensure widespread access, affordability, and availability of AMD treatments, including public funding for therapies and devices. 

RECOMMENDATION 5: 

Establish accessible, affordable, and standardized rehabilitation services for elderly individuals with low vision, driven by regional cooperation and national program rollouts. 

RECOMMENDATION 6: 

Boost the accessibility and availability of social support and benefits for the aging eye community through regional collaboration and national legislation. 

RECOMMENDATION 7: 

Revitalize data collection, curation, and application through regional and international regulations,  

RECOMMENDATION 8: 

Address the mental health needs of aging eye patients and caregivers with actionable regional and national initiatives. 

RECOMMENDATION 9: 

Promote  the inclusion of the aging eye community in the workforce through regional collaboration, national programs, and a focus on accessibility and safety. 

RECOMMENDATION 10: 

Ensure active participation, engagement, and leadership of the aging eye community in policy development and decision-making processes at all levels. 

Members of the Coalition so far:  

Ireland – Foundation Fighting Blindness 

Italy- Retina Italia 

Greece- Hellenic Retina Society 

France- Retina France 

Spain – Fundación FARPE 

Bulgaria – Retina Bulgaria Association 

Germany – ProRetina Germany

For more information contact our membership and engagement coordinator, Laura Lopez at laura.caraballo@retina-international.org