Why education must extend beyond patients to make a difference in diabetic eye disease
Francesco Bandello, MD, FEBO, discusses the Diabetic Eye Conditions Coalition and a five-point call to action
In June 2024, the International Agency for the Prevention of Blindness (IAPB) and AbbVie launched the Diabetic Eye Conditions (DEC) Coalition. A group of regional and global partners centered in Europe, the DEC Coalition’s primary initiative is to engage European policymakers in prevention of diabetes and related eye complications. The DEC Coalition shared its five calls to action last summer in hopes of sparking actions in the lead-up to the IAPB Global Eye Health Summit 2026.1
To learn more about the DEC Coalition and its directives, Ophthalmology Times Europe spoke with Francesco Bandello, MD, FEBO, who is head of the ophthalmology unit at IRCCS Ospedale San Raffaele in Milan, Italy. Prof Bandello was a key participant in the launch of the DEC Coalition. In this interview, he contextualised the group’s five-point call to action.
Five actions that can reshape DEC in Europe
“With the global rise in diabetes and an ageing population, the incidence of diabetic eye conditions is expected to grow,” reads a statement from the DEC Coalition at launch. “Despite advancements in diagnosis and treatment, many people remain undiagnosed and untreated, missing the opportunity to prevent a disability that has a serious impact on individuals and society.”1
Prof Bandello described those five calls to action as crucial to management of DECs, because they empower and inform patients. “It's very easy to motivate patients when the broader culture is one of education and information,” he said.
The DEC Coalition calls on policymakers to:
- Integrate eye health into European diabetes policies, national health strategic plans and primary care models
- Standardise screening protocols for DEC to ensure consistent and high-quality care across Europe
- Expand comprehensive patient education programmes across settings and age groups, to raise awareness and enhance self-management of DEC
- Advance equitable access to innovative diagnostics, treatments and assistive technologies for people living with DEC across Europe
- Enhance data collection and data sharing across health systems to inform regional and national policies that aim to improve care for people living with DEC
“Building a culture of awareness from very early on is so important,” said Prof Bandello. “The level of knowledge, and the accessibility of information within a country’s or region’s culture, make all the difference.”
Courtesy of IAPB/DEC Coalition.
A shifting focus in DEC
Opportunities for patient education become more important as the population of patients with diabetes and DECs grows. “I have seen a huge increase of diabetic patients in my country,” Prof Bandello said. “The number of patients with diabetes in Italy has increased. But if you look at the level of diabetic retinopathy, during these last few years, it has been showing some improvement.”
In his practice in Italy and across Europe, Prof Bandello said, the most advanced forms of diabetic retinopathy are receding in commonality. “We do not see the most advanced form, proliferative diabetic retinopathy, which was very common previously, as much as we did in the past,” Prof Bandello said. “And the obvious reason for that is that the quality of diabetes treatment has improved. The quality of metabolic control in these patients improved, and generally speaking, patients are now empowered to treat diabetes much more effectively.”
Now, he said, most clinicians are working to manage non-proliferative forms of retinopathy, or other ocular complications of diabetes. One such DEC is diabetic macular oedema (DMO), which has surged within many patient groups, Prof Bandello said. “Maybe this is because we are able to have a more accurate diagnosis of DMO using optical coherence tomography (OCT),” Prof Bandello said. “In any case, DMO has become the most pressing ocular condition among patients with diabetes.”
In the near future, Prof Bandello predicted, clinicians and industry partners will make DMO a main focus in eye care. That shifting focus towards macular oedema is already underway, he noted, as exhibited by the increasing availability and accessibility of therapies for DMO. “Previously, we were not able to do as much for patients with DMO as we are today. We did not have any intravitreal therapy,” he said. “In the past, the therapies that were available for DMO, like laser treatments, were absolutely not comparable with the intravitreal therapies that we have today. As DMO becomes and remains the main topic in diabetic eye care, those therapies can only improve.”
Global leaders, clinical perspectives
A primary goal of the DEC Coalition is to “integrate eye health into European diabetes policies, national health strategic plans and primary care models.” According to Prof Bandello, this is a strategy that, while simple on it face, would have the biggest impact on patients throughout Europe.
“Follow up is one of the most important things in chronic diseases such as diabetes,” Prof Bandello emphasised. “For follow up, for advanced therapies, you need good compliance, and for that, you need education. You need knowledge.” Clinicians need to ensure that patients are informed about their disease, both its current status and management options, and what the future outlook is for progression and visual acuity, Prof Bandello said.
He continued, saying, “It’s important that we, as clinicians, should push [policymakers] to install, from elementary school, some kind of education about diabetes. We need to teach very young people how to have a good quality of life, how to exercise and how to have the best possible diet. And all these things must be started in the elementary school years.”
Management of DECs, he said, is improving, but the outcomes are often too little, too late. “What is happening now is that we always arrive late,” Prof Bandello said. “The most important thing should be first-line prevention of diabetes, primary prevention. Secondary prevention, of diabetic eye conditions or other complications, is already too late for the patient with diabetes. Preventing diabetes is simply much, much better.”
Here, Prof Bandello said, it becomes clear that patient education is not enough: policymakers across Europe need to be educated, too. Clinician-researchers can and should inform policymakers about what is possible in diabetes management, the benefits of prevention, and the economic factors tied to treatment and prevention of DECs, Prof Bandello said.
“The truth is, [many policymakers] do not consider clinicians' interest in education and screening important,” Prof Bandello said. “They understand that the results that we see from the implementation of screening programmes may only emerge after 10 or 15 years.” For many people in government, Prof Bandello said, 15 years is “an entire political life.”
“In these cases, the policymakers are only sensitive to what is happening in 1 year, in 18 months, when they have the next election,” he continued. “So, they prioritise something that delivers visible results in a very short time.” This makes advocacy work vitally important, Prof Bandello said. While some people in government may not be “sensitive” to the urgency of preventative care, “When you explain it to them, they do understand.”
“They do understand the problems. They are smart people, and they can see why preventative education is so important for reducing the impact of diabetes,” Prof Bandello said. “But, at least in my experience, policymakers are not as motivated as clinicians to make that change, which is why groups like the DEC Coalition are necessary.”
