It is startling to learn that there are over twice as many Americans living with age-related macular degeneration (AMD) as those with Alzheimer's disease (AD). Research shows that nearly 20 million individuals in the US, aged 40+, wake up each morning facing challenges related to some form of macular degeneration, compared to an estimated 6.9 million Americans aged 65 and older currently living with Alzheimer's. Globally, the medical community worldwide is bracing for the next surge in AMD cases, with prevalence expected to affect approximately 288 million people by 2040. In the US alone, by age 75 roughly one in three people will develop some form of AMD, and one in four of those will progress to a vision-threatening, late-stage form of the disease.
In light of this disparity, pro-active advocacy efforts are needed to influence policies and secure necessary resources to expand early AMD detection, improve patient outcomes, and enhance the quality of life for those affected.
Importance of early diagnosis
Raising awareness of AMD can lead to better understanding of the disease and informed decision-making by a more educated patient and caregiver community. Public awareness campaigns by organizations such as the American Macular Degeneration Foundation (AMDF) and Prevent Blindness (see Sidebar) all stress the importance of early detection for AMD as the key to preserving vision for as long as possible.
A recent study conducted by AMDF shows that for wet AMD onset, time is even more critical: the earlier a patient begins receiving anti-VEGF treatments, the better their outcome is likely to be. This can be as early as within the first 48 hours of onset. In fact, research suggests that time-to-treatment may be the most important factor in preserving vision.
A new study by Prevent Blindness estimates that 18.34 million Americans have early AMD and 1.49 million are affected by the vision-threatening late stage of AMD (“late AMD” in this study includes geographic atrophy) In addition to national prevalence data, the study also provides data at state and county levels.
Key findings from the study include:
Approximately one in 10 Americans aged 50 and older has early AMD, while about one in 100 has the vision-threatening late stage of AMD.
Among those aged 80 and older, nearly three in 10 have early AMD, and approximately one in 10 live with the vision-threatening late stage.
Gender- and age-standardized rates of AMD were lowest among Black Americans compared to other racial/ethnic groups.
The prevalence of both early and late AMD varies significantly in the US. After adjusting for gender and race/ethnicity, rates of vision-threatening AMD were highest in the Midwest, New England, and Florida.
AMD portal initiative
An initiative is underway to build and implement the first-of-its-kind, secure online portal for healthcare professionals and those living with AMD and their caregivers, aptly named “Eyes on the Future.” The portal will enable AMD patients and caregivers to find resources for support and treatment; interact with and learn from one another; provide resources for doctors engaged in research and patient care; and collect real-world data about how treatments are really working for patients, while also identifying issues they are experiencing in seeking treatment.
The portal will improve communications, enhance trust, contribute to better disease management and advance more efficient and cost-effective care. It will securely collect patient outcomes data and demographics with strict privacy and confidentiality safeguards to support research and analytics using anonymized and aggregated data. Data collection methodologies will include standardized surveys assessing visual function, general health, treatment satisfaction, symptom state, outcomes and other indicators.
As development progresses, patients will gain access to a number of support resources, including information on healthy eye habits and local education. There will also be transportation assistance available for medical visits, as well as tools and tips provided for maintaining eye health through lifestyle changes – such as diet modifications and smoking cessation. Guidance on early detection, genetic risk factors, disease management and treatment adherence will also be accessible via the portal.
Additionally, regular newsletter and web postings will provide topical insights on insurance coverage and medication copay assistance programs, ongoing and emerging research into the disease, updates current studies, and a mechanism for researchers to submit proposals for portal-based data research. Social determinants of health (SDoH) and health equity, as well as advice on how patients can overcome barriers to treatment; will also be available.
No resource of this scope currently exists in the US. Once developed, the portal will offer opportunities for collaboration with pharmaceutical companies, payers, and other stakeholders. It is expected to become a significant step forward in boosting awareness, building advocacy for AMD, and ultimately improving patient functional outcomes.
Call for policy change
There is a pressing need to establish policies for standardized AMD screening and therapeutic guidelines to reduce the future social and financial burden of the disease, and improve the declining quality of life among the elderly. As such, public-private partnerships (PPPs) that dedicate resources to AMD will be essential in raising awareness of modifiable risk factors and promoting the use of beneficial nutritional supplements. These efforts can help increase recognition of AMD and reduce disease-related morbidity.
A vision for AMD
The initiatives described have the potential to advance access to care, improve the quality of services – including early diagnosis, therapy and patient satisfaction – and help address health inequities by improving outreach to underserved communities. As a leading cause of severe, irreversible vision impairment in developed countries, AMD warrants the urgent attention and support of all stakeholders that seek to enhance the health and well-being of a rapidly aging population.
April is Healthcare Thought Leadership and Innovation Month
Featured in the SHSMD Healthcare Observances Calendar and recognized by the American Hospital Association’s professional network of 3,700 members, Healthcare Thought Leadership and Innovation Month highlights transformative programs shaping the future of care.
One of TLI's key initiatives, Eyes on the Future, is dedicated to advancing solutions for AMD through cutting-edge research, patient-centered tools, and innovative frameworks that empower patients, caregivers, and practitioners. By fostering collaboration and leveraging data-driven insights, Eyes on the Future is shaping the future of AMD care and treatment.
Next steps for Eyes on the Future include onboarding additional advisory board members to help shape data collection as well as guide governance policies for the portal. Additionally, Eyes on the Future is partnering with company and individual sponsors who are committed to the vision of the portal. TLI is accepting queries regarding Eyes on the Portal through the Contact Us section on its website. Together, we can drive meaningful change for AMD patients and beyond.
#ThoughtLeadershipAndInnovationMonth
