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Adherence in 2025: How Close Are We to Finally Solving the Retinal Treatment Burden?

“Every time I miss a shot, I see less. But I also might lose my job if I go. What would you choose?”

It’s a choice no one should have to make, yet in clinics around the world nearly two decades into the anti-VEGF era, patients with age-related macular degeneration (AMD) and diabetic macular edema (DME) still face the impossible trade-off between sight and survival. The treatment burden, well-known for years, hasn’t disappeared, but in 2025, it has finally come into sharper focus with unprecedented global data to guide solutions.

The Barometer Global Survey, spanning 24 countries, over 10,000 voices and six continents, is the largest initiative of its kind.1,2 It captures the perspectives of patients, providers and clinic staff on the real-world friction of managing retinal disease. 

READ MORE: Roche Survey Highlights Asia Pacific’s Silent Struggle with Eye Care

While it confirms what many in the field already know—that treatment burden is high and adherence is fragile—it also offers something rare: clarity of direction and purpose. The data maps out where patients fall through the cracks and where clinics are struggling to catch them.

This feature goes beyond the headlines to ask: what does the data mean in the scheme of things? And how does the picture look different now that we’re seeing it clearly, all at once?

Seeing the big picture with the Barometer

The scope of the Barometer program is enough to make anyone sit up a little straighter in the exam chair. The initiative conducted parallel surveys drawing responses from:

  • 4,558 nAMD patients, 659 providers and 1,208 clinic staff1
  • 3,752 DME patients, 680 providers and 1,249 clinic staff2
  • Across 77-78 ophthalmology clinics in 24 countries1,2

This isn’t a niche report. It’s a retina reality check, and the results paint a sobering picture of treatment adherence in 2025.

Treatment fatigue is not just about the needle

Almost half of all respondents said the frequency of treatment was overwhelming:

  • 45.9% of nAMD and 51.7% of DME patients found treatment frequency too high1,2
  • Nearly 50% cited long wait times as a major burden2
  • A third of DME patients reported clinic visits lasting 2-4 hours1,2

READ MORE: Oral Lamivudine Shows Vision Gains in DME Patients in Early Clinical Trial

Add to this the hidden costs like parking fees, transport struggles, unpaid leave and it’s clear that injections are only one part of the story.

“Patients do not build trust in a perfectly efficient injection factory,” said Prof. Focke Ziemssen of Eberhard Karls University. “What improves adherence is a balance of streamlined process and personal connection.”

Yet connection takes time, and time is in short supply. Over 60% of providers reported that clinic capacity limits patient outcomes. Nearly 80% flagged poor adherence in the first year of treatment as a major challenge.1,2 These findings point to broader challenges in how care is organized and delivered.

A clinical communication breakdown

The Barometer findings also uncovered a troubling trust gap between what patients believe and what doctors assume they understand:

  • 22.5% of nAMD patients questioned whether treatment was necessary1
  • 41.1% of DME patients weren’t sure how long treatment would last2
  • 45.1% expected significant visual improvement, which isn’t always realistic1,2

“Even basic facts like ‘this is a chronic condition’ are not universally known,” said Prof. Ziemssen. “There can be no treatment adherence over many months if the patient doesn’t understand what’s meant by ‘chronic’.”

Assoc. Prof. Adrian Koh from Singapore agrees, explaining that “Thirty percent of patients were unsure if the treatment they were receiving was working or not. That tells me we are perhaps assuming too much about what patients understand.”

He’s introduced standardized counseling protocols in his clinic to better align expectations, train support staff and deliver information at every phase, from diagnosis and loading to maintenance. “Without this clear understanding,” he said, “it’s not difficult to see why some patients default or give up.”

These insights help explain why adherence so often unravels, even when care is available. It’s not always the cost or the commute. Sometimes, it’s the context.

What’s actually clicking in the clinic?

The good news is that the data doesn’t just highlight problems, it also points to real-world solutions that are gaining traction across different healthcare systems.

What patients are really asking for:

  • Appointment reminders
  • More time with their doctor
  • Clarity about long-term expectations
  • Consistency in care teams
  • Tools to explain their condition to employers and caregivers1,2

Practical moves clinics are making:

  • Nurse-led injection days to free up physician time
  • Educational materials tailored to phase of care
  • Visual OCT summaries to show progress
  • Audits of no-shows and tailored follow-up
  • Flexible communication methods for younger patients balancing work and treatment

“We’ve introduced a patient audit system,” said Dr. Koh, “to monitor and contact patients who don’t show up. And we use patient education tools developed by the Vision Academy to support our staff and patients.”

Small shifts like these can ripple out into major improvements. But the system also needs to evolve.

Technology’s growing role in 2025

In 2025, technology is increasingly bridging the gap between clinic capacity and patient needs. Mobile apps now remind patients of appointments, track symptoms and even provide virtual visual field tests between visits.3 Telehealth platforms offer remote monitoring for stable patients, reducing unnecessary travel while maintaining surveillance.4

These digital tools work best when tailored to patient demographics. While younger DME patients prefer app-based communications, older AMD patients often benefit from simplified phone reminders and family portal access.

A broader view of eye clinics and health systems

Dr. Jane Barratt, Global Ageing and Health Systems Strategist, emphasizes the need to reframe vision care as public health infrastructure. “Adherence is not just a behavioral issue—it’s a system failure,” she said. “The pathway to treatment may be technically available but practically inaccessible.”

Her recommendation is to integrate eye health into primary and community care. That includes:

  • Screening at the community level
  • Transportation assistance
  • Home visits where feasible
  • Coverage for wraparound services under national health plans

And perhaps most importantly, a shift in mindset.

“We need to move from seeing patients as passive recipients to people as partners in their health,” said Dr. Barratt. “That shift changes everything—from how we design care to how we define success.”

The evolving therapy landscape

As care evolves, so does the therapy landscape. One of the biggest regulatory shifts came earlier this year, when the European Commission approved Bayer’s Eylea 8mg (aflibercept) for use in nAMD and DME. The new formulation is now the only anti-VEGF therapy in the EU authorized for extended treatment intervals of up to five months, showing the growing demand for lower treatment burden and longer-lasting control.5

READ MORE: Bayer Notches Dual EYLEA 8mg Wins With China nAMD Approval and EU 6-Month Interval Extension

China has also approved Eylea 8mg for nAMD, joining a growing list of more than 50 markets.6 The decision was backed by data from the PULSAR trial, which showed that the 8mg formulation matched standard Eylea in maintaining vision gains, while allowing for significantly longer intervals between injections.7

The therapy landscape continues to diversify beyond aflibercept. Port delivery systems, gene therapies and combination approaches are all advancing through clinical pipelines, promising to further reduce the injection burden in coming years.8

The hope is that longer intervals can lighten the load. But doctors are quick to note that this is not a silver bullet. “Longer intervals are welcome,” said Prof. Ziemssen, “but they can also lead to overconfidence. Patients assume they’re cured and drop off care.”

Even Bayer’s leadership team emphasized that long-duration therapies must be paired with systemic changes.

“The Global Survey produced valuable insights into the different struggles that patients with nAMD and DME face,” said Vice President, Global Ophthalmology Lead at Bayer, Anna Braeken. “It highlights the value of long duration therapies and allows us to uncover practical and meaningful interventions to help improve outcomes for patients.”

READ MORE: Advances in AMD and DME Take Center Stage at APAO 2025

A global challenge with local flavors

While treatment burden is universal, the Barometer data reveals the key regional nuances in adherence challenges.

In Asia-Pacific regions, family involvement is essential. Over 70% of patients rely on relatives for transportation and support, and caregivers often attend appointments alongside patients. Yet logistical issues persist: 48.3% of nAMD patients in the region say they need help getting to clinics, and 45.7% struggle with scheduling.1 

European clinics report better coverage, but capacity is a pressing issue. Patients cite long wait times, limited appointment availability and insufficient consultation time as major concerns. In Germany, for example, the emphasis is shifting toward communication-based interventions like tailored treatment plans and visual OCT summaries to mitigate misunderstanding and build trust.2

In North America, insurance constraints loom large. U.S. patients in particular expressed uncertainty around treatment costs, eligibility and long-term coverage.1 More than half of respondents flagged co-pays and out-of-pocket expenses as adherence barriers, even when clinics were geographically accessible.2

Each region faces a different flavor of the same problem. But across the board, a few constants remain: clear communication, continuous access and a coordinated care team.

“What works in Singapore may not work in Stockholm,” notes Prof. Koh. “But the fundamental need for clear communication, accessible care and realistic expectations is universal.”

READ MORE: Failed Compliance Remains Major Problem with Anti-VEGF

Patient perspectives: More than a data point

It’s one thing to cite percentages and it’s quite another to hear what those percentages sound like in real patients’ lives.

“It’s like I’m alive again,” said Nicholas Berharovic, 81, who now receives quarterly rather than monthly injections. “Sticking to the monthly injection plan was a real pain… but now I can see my grandkids in Europe and still make it back for my next shot.”

Actress Juta Kamen, living with nAMD for 15 years, echoed that balance of resilience and realism.

“I go for long walks, write books, and go on reading tours. I won’t let AMD take that from me,” she said. “But I’m lucky to have support. That’s what makes this work.”

Not all patients are so fortunate. The data shows significant barriers remain:

  • Over 50% of DME patients feel like a burden to family
  • 40.8% struggle to find someone to accompany them
  • 48.4% say transportation is a barrier1

Prof. Koh pointed to the mental health and occupational toll on younger patients. “Some struggle to explain their clinic visits to employers or teachers. Developing an information pack for supervisors to justify absences is one practical way we can better support them.”

What’s next for adherence

Dr. Barratt believes the next step is reframing vision care as a public health issue.

“We need to embed vision screening, diagnosis, treatment and rehabilitation into primary care and community-based services,” she said. “This is about autonomy, participation and dignity.”

Key recommendations include:

  • Building vision care into universal health coverage
  • Funding transportation, home care and culturally appropriate education
  • Clinic audits to better understand drop-offs
  • Simplified pathways with clear expectations

Prof. Ziemssen adds that Germany’s public coverage gives clinics room to innovate. “We can focus on how care is delivered, not just what’s delivered,” he said. “Long-acting agents used systematically can reduce the breaking points of a consistent therapy.”

READ MORE: NexThera, Oculis and Bayer Report Advances in Retinal Disease Therapies

“The greatest opportunity lies in first understanding the landscape,” said Prof. Koh. “When we clearly identify the barriers faced by patients, caregivers and clinic staff, we can tailor our strategies and build a more resilient, responsive system.”

So what does this mean in the scheme of things?

Treatment burden in 2025 is no longer a vague idea floating in the clinical ether. It has names, numbers and a paper trail. Adherence isn’t just a patient problem or a clinic problem. It’s both a system-wide challenge and an opportunity.

It means we know where the gaps are and who’s falling through them. It means we have data, tools and stories that weren’t available a year ago. And most importantly, it means there’s no excuse for acting like adherence is still a mystery.

2025 may not be the year we solve the treatment burden, but it’s the year we ran out of reasons not to try. Looking ahead to 2026 and beyond, the field stands at an inflection point: with longer-acting therapies continuing to emerge and digital health solutions maturing, the focus must shift from identifying problems to scaling solutions.

The Barometer Survey brought the problem into focus. What comes next is keeping patients in the picture.

Editor’s Note: This content is intended exclusively for healthcare professionals. It is not intended for the general public. Products or therapies discussed may not be registered or approved in all jurisdictions, including Singapore.

References

  1. Loewenstein A, Sylvanowicz M, Amoaku WM, et al. Global insights from patients, providers, and staff on challenges and solutions in managing neovascular age-related macular degeneration. Ophthalmol Ther. 2025;14:211-228. 
  2. Ziemssen F, Sylvanowicz M, Amoaku WM, et al. Improving clinical management of diabetic macular edema: insights from a global survey of patients, healthcare providers, and clinic staff. Ophthalmol Ther. 2025;14:229-246. 
  3. Morjaria P, Massie J, Harvey A-A, et al. Application of mobile health (mHealth) in the field of eye care: a scoping review of interventions used by individuals and health services to communicate. Res Online LSHTM. 2025. Available at: https://researchonline.lshtm.ac.uk/id/eprint/4675888/ Accessed on June 10, 2025
  4. Jacobs J, Sanborn G. A tele-ophthalmology model for remote monitoring of patients with age-related macular degeneration. Invest Ophthalmol Vis Sci. 2023;64:1757. 
  5. Bayer. New Eylea 8 mg approved in EU for nAMD and DME. 2024. Available at: https://www.bayer.com/media/en-us/new-eylea-8-mg-approved-in-eu/ Accessed on June 10, 2025
  6. Bayer. Eylea 8 mg approved in China for wet age-related macular degeneration. 2025. Available at: https://www.bayer.com/media/en-us/eylea-8-mg-approved-in-china-for-wet-age-related-macular-degeneration/ Accessed on Accessed on June 10, 2025
  7. Lanzetta P, Korobelnik JF, Heier JS, et al. Intravitreal aflibercept 8 mg in neovascular age-related macular degeneration (PULSAR): 48-week results from a randomised, double-masked, non-inferiority, phase 3 trial. Lancet. 2024;403(10432):1141-1152. 
  8. Campochiaro PA, Avery R, Brown DM, et al. Gene therapy for neovascular age-related macular degeneration by subretinal delivery of RGX-314: a phase 1/2a dose-escalation study. Lancet. 2024;403(10438):1574-1584.
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