A voice in Brussels

Prof Einar Stefánsson explains how EU-EYE is lobbying for eye disease research funding at European level

Gary Finnegan

Posted: Wednesday, February 1, 2017

Tens of millions of people in Europe suffer from visual impairment, blindness and eye diseases but they do not receive enough attention at European level. We want to address this discrepancy,” says Einar Stefánsson MD, PhD.

Prof Stefánsson is President of EU-EYE, the European Alliance for Vision Research and Ophthalmology, a lobby group representing over 15,000 medical doctors specialising in eye diseases.
The goal of EU-EYE is to put eye health on the map in Brussels and secure greater investment in ophthalmology research. The potential prize is great. Europe’s Horizon 2020 research programme will be replaced in three years and discussions about the shape of its successor are already under way.
The member organisations of EU-EYE are: the European Society of Cataract and Refractive Surgeons (ESCRS); European Society of Retina Specialists (EURETINA); European Glaucoma Society (EGS); European Association for Vision and Eye Research (EVER); European Eye Bank Association (EEBA); European Paediatric Ophthalmology Society (EPOS); European Society of Cornea and Ocular Surface Disease Specialists (EuCornea); European Association for the Study of Diabetes/Ophthalmology Section (EASDec); and European Vision Institute (EVI).

With a total budget of €80 billion, Horizon 2020 is the eighth EU research programme, and by far the largest. From small projects led by a single principal investigator and support for fledgling researchers, to large cross-border collaborations, public-private partnerships, and investment in research infrastructure, European research funding is spread across scientific disciplines. Yet there is a sense that ophthalmology and eye disease have punched below their weight in the past.
“We don’t seek to criticise other disease areas but there are fields where the scale of the clinical problem is relatively modest, but the support from Europe is greater than for eye health,” says Prof Stefánsson.
EU-EYE aims to change that. “What surprised me when we started this work was that all the medical specialities – even other eye care professional societies – were already doing this in Brussels,” says Prof Stefánsson. “Our voice was missing and, frankly, it is amazing that we left this vacuum for so many years.”

EU-EYE has held two conferences in European Parliament buildings which were well attended by MEPs and their staff, along with officials working on the Horizon 2020 programme. It was an opportunity to raise awareness of eye health and spell out the urgent need for research funding in a field where demographic pressures imply rising demand for decades to come.
In a town where just about everybody has a lobbyist, standing out from the crowd is a challenge.
One tactic is to tap into policymakers’ pre-existing concerns over diabetes, ageing and the cost of healthcare. That is why EU-EYE co-authored a position paper, Preventing Sight Loss in an Ageing Population. The paper calls on the EU to treat eye health as seriously as other chronic diseases when allocating health and social research funding.
Diabetic retinopathy is a particularly hard-hitting case study of how ophthalmology services and research insights will be essential to managing the fallout from Europe’s burgeoning diabetes epidemic.
“Retinopathy is the most common cause of preventable blindness in the world in people of working age. We are highlighting this to decision-makers to explain why better screening and management are invaluable,” says Prof Stefánsson.
“Vision is such a strong determinant of quality of life and the potential for productivity. The economic arguments in favour of improving research and healthcare are astounding. Whether it’s treating age-related macular degeneration, screening for diabetic retinopathy or supporting cataract surgery, ophthalmology can dramatically improve people’s lives at a relatively low cost,” he added.
To date, the reaction from Brussels has been favourable and other lobbyists are starting to take notice. Starting from a low base, EU-EYE has been raising awareness of eye diseases while building networks with other groups that share their goals – including the European Coalition for Vision (ECV), European Forum Against Blindness (EFAB), and the European Public Health Alliance (EPHA).

The next step will be to connect with national advocacy groups and professional bodies. “We are supported by pan-European societies but we think that national ophthalmology societies and companies involved in eye care should be brought into the fold,” Prof Stefánsson says.
Looking ahead, the big challenge is to shape the next EU research programme to make it more open to eye research. The current programme, Horizon 2020, is less restrictive than its predecessor and EU-EYE hopes this trend continues, as broader calls for applications give ophthalmology researcher more scope for securing funds.
With so many other voices at the table, Prof Stefánsson knows that a busy few years lie ahead. Success is not guaranteed but, unless eye specialists are present, failure is certain.
“Lobbying is not the cure-all, but on the other hand, if our voice is not heard at the highest level then the likelihood is we will be ignored,” Prof Stefánsson says.

Einar Stefánsson: