Real-World Data Shows Vision Decline as Copay Programs Run Dry | AAO 2025

A real-world analysis has confirmed the negative impact on patients when they lose copay assistance for treatments for retina and macular disease. Presented today during a session at the annual American Academy of Ophthalmology meeting, the results show that low-income patients especially are hit hardest by underfunding of copay assistance.

Led by Philip I. Niles, M.D., vitreoretinal surgeon at Buffalo Niagara Retina, the research presented today aimed to validate with real-world clinical evidence the findings of a survey done early this year by the American Society of Retina Specialists (ASRS). That survey, presented at the ASRS meeting in August 2025, asked 455 retina specialists about how they have adapted to the underfunding of one such program, Good Days. As of January 2025, the nonprofit’s funding for retina and macular disease treatment has been unreliable.

The ASRS survey found that about 93% of those they surveyed switched to lower-cost alternatives, 60% delayed treatment, 41% skipped doses, 39% extended treatment intervals, and 26% stopped treatment entirely. As a result, 61% of respondents observed vision loss among affected patients, and 63% reported loss to follow-up.

Switching to Avastin was the most common adaptation reported for patients with wet age-related macular degeneration (AMD) and diabetic macular edema (DME). Avastin (bevacizumab) is an oncology drug that is used off-label to treat these conditions and must be obtained from compounding pharmacies.

Niles and colleagues assessed the electronic health records from Vestrum Retinal Health for 340 retina specialists across 68 clinics from January 24, 2025, through June 25, 2025. They identified patients with ICD-10 codes and used J codes to determine which medications were used. Their analysis included 280,000 treated eyes for AMD, DME, and geographic atrophy. They looked at care patterns, including switching patients from on-label to off-label therapy, atypical sample utilization, and continued use of bevacizumab despite decreased visual acuity.

During that time frame, Niles and his colleagues found a 50-fold increase in switching from on-label treatments to off-label treatments. “We recently obtained new data that show this trend is continuing to accumulate, and there are more patients that are cumulatively being switched from on-label to off-label therapy,” he said during his presentation. “Although the data for DME for the second quarter of 2025 is not yet available, we saw a 14-times increase.”

For the subset of patients with diabetic macular edema, this switching to off-label therapy was the highest among those covered through Medicare Advantage plans. “Medicare Advantage patients account for about 24% of the patients in the DME group,” Niles said. “While geographic atrophy does not have a bevacizumab equivalent, we found a change in practice patterns with complement inhibitor therapy. The volume of injections rose 40% from 2023 to 2024 but then plateaued in the first quarter of 2025.”

In terms of sample use, the researchers found an increase among patients who sought continued therapy (referred to as non-naïve eyes) of 82% for exudative AMD and 234% for GA [geographic atrophy] use just in the second half of 2024. For patients with DME, there was a 23.4% increase in sample utilization for non-naive eyes, with a 105% increase in the Medicare Advantage population.

For the third care pattern studied, continued use of bevacizumab among patients who experienced a decline in vision, researchers saw a baseline of 4.7% per quarter in 2024. That increased to 5.7% in the first quarter of 2025 and to 7.4% in the second of 2025. “This represents a 56% increase from baseline,” Niles said. This was more common among patients in lower-income communities.

“There’s significant concern that this trend will continue to increase over time,” Niles said. “While it feels that we’ve been working with the Good Days shortage of copay assistance funding for a long time, we may actually be in the early days of this for our patients.”