Elisenda Rom: “Ulls del Món has evolved towards a more comprehensive approach rooted in local communities”

More than one billion people worldwide live with vision loss due to a lack of access to basic eye care. Even more worryingly, if no action is taken, that figure could rise to 1.8 billion by 2050, according to the International Agency for the Prevention of Blindness (IAPB).

One of the Catalan organisations working to reverse this situation is the Fundació Ulls del Món, which is celebrating 25 years of work this year and entering a new phase with the approval of a new Strategic Plan. We speak to Elisenda Rom, Deputy Director and Head of Communications at the organisation, about the Foundation’s evolution, inequalities in access to eye care and the challenges that will shape the coming years.

Ulls del Món is celebrating its 25th anniversary. Looking back, how has the Foundation evolved to where it is today, and what would you say you have learned along the way?

When we started, we were a very small organisation, with little experience and limited knowledge, but a great deal of enthusiasm. We began by organising surgical missions, with professionals from here travelling to the countries where we worked to perform operations. Those interventions could bring about a very significant change in the life of each person we were able to operate on, but we soon realised that this model was not sustainable.

What made you rethink that initial model of intervention?

For a few years, we continued carrying out these interventions because they helped bring existing needs to the surface. If you live in Mozambique, in a rural area far from the city, and you have seen your father or grandfather go blind at a certain age, when the same thing happens to you it can simply come to be seen as part of the natural course of life, and you may not even wonder whether there is a solution.

That is why we continued travelling for some time, hoping that word of mouth would help spread the idea that solutions did exist. People who had undergone surgery returned to their villages, spoke to others and helped spread the message that this loss of vision, this blindness, was avoidable.

In fact, it is avoidable in most cases.

Exactly. Most cases of avoidable blindness are caused by cataracts. Cataract surgery is a relatively short and straightforward procedure for an experienced professional, and it can restore vision. Nobody should have to go blind because of cataracts. That should not exist anywhere in the world; it is completely unfair.

As more people became aware of this, there was also a growing need for local ophthalmology services and health systems to be able to respond to this type of treatment and care.

How did your way of working change from that point onwards?

From then on, we placed a major emphasis on training all kinds of professionals at every level of the health system. The idea is that someone should be able to go to a local health centre, undergo an initial screening, be referred to a specialist and, if they need surgery, have access to a hospital with the professionals and equipment required to carry it out.

And we are not only talking about ophthalmologists. Operating theatre staff and professionals responsible for maintaining equipment also need to be trained, because equipment breaks down everywhere, here and there, and it needs to be repaired and kept in proper working condition.

Does this training go beyond healthcare professionals?

Yes. We also began working in schools and training teachers so that they could carry out an initial identification and referral. It is something very simple, but they can make an enormous difference, because a child has their whole life ahead of them. Sometimes it can be as simple as identifying that a child needs glasses.

How has this model evolved as you have consolidated local teams?

Over time, we have built up local teams, and there are now more and more trained professionals who are able to care for the population. This has allowed us to go beyond strictly ophthalmological care and also work on other determinants of health, such as gender or access to water, because having running water to wash your face and eyes can also have an impact on eye health.

Ulls del Món has evolved towards a more comprehensive approach rooted in local communities and integrated into the health structures of each territory.

You are reaching your 25th anniversary with a new Strategic Plan and are talking about a new phase. What will actually change in the way Ulls del Món works from now on?

Among other things, we want to expand our work to new conditions. Until now, cataracts and refractive errors have been the main problems we have encountered among the people we work with, but there are others that we also need to address.

For example?

There are conditions that require more continuous follow-up, such as glaucoma, as well as others that, according to current data, will have an increasing impact, such as macular degeneration or retinopathies. The latter are often related to diabetes, and diet and changes in our lifestyles also play a role here, directly affecting eye health.

What other areas do you want to explore from now on?

This new phase is not only about expanding the range of conditions we address. We have also decided to work here, with people in our own communities who are experiencing vision loss, and we have already begun doing so on a pilot basis through the Ulls Propers project.

The situation cannot be compared with that of the countries where we usually work. Here, we have a public health system that treats eye diseases, although not optical care, but there are people who, because of their vulnerable circumstances, do not access these services.

Who have you started working with?

For example, with people experiencing homelessness, together with Arrels. The aim is for their teams to be able to carry out this initial identification, which is key for us, and identify people who may have eye health needs.

From there, if someone is diagnosed, for example, with a cataract that requires surgery, the question is how that person can be supported so that they can access the treatment they need within the public health system.

You talk about eye health as an issue of equity. What does that mean in a person’s life?

Our understanding of the right to sight is based on the impact that vision has on people’s lives. Vision loss can affect many aspects of everyday life. It can be as simple as not being able to see the street where you live or the faces of the people closest to you, but it can also mean not being able to work, study, care for your family or fully develop your potential. That is why we understand sight as a right.

The Strategic Plan also calls for a more structural transformation. What does that mean in practice?

An important part of this is digitalisation and supporting health services in the countries where we work so that they have greater capacity and better information. For example, we have just completed two Rapid Assessment of Avoidable Blindness (RAAB) studies, which help us understand the situation regarding avoidable blindness in each country and better identify the needs of each population.

We support countries so that they have this information and can define more clearly what their needs are and how they should address them. Technology also allows us to reach areas where there is a shortage of professionals, not only in terms of care but also training, through online training and telemedicine. Everything related to quality and making our work more efficient will be essential in the future.

International forecasts point to a sharp increase in vision loss over the coming decades. What is driving this trend?

It is a global challenge. The International Agency for the Prevention of Blindness (IAPB) has studied this trend internationally and points to a significant increase in vision problems. Several factors are involved.

On the one hand, there is global population growth and ageing. On the other, there are changes in lifestyles, such as the increase in diabetes, sedentary lifestyles and screen use. All of this is affecting eye health and also the conditions that will become more prevalent in the future.

Which conditions will become more prevalent in the coming years?

Problems such as myopia, macular degeneration and retinopathies are expected to become increasingly common. In the case of macular degeneration, age plays an important role. If we live longer, age-related eye diseases will also become more common, including conditions that have not been as prevalent until now.

Diabetes-related retinopathies are also expected to increase, because there will be more and more people living with diabetes and, therefore, more eye-related complications.

You mentioned inequalities earlier. Do women still face specific barriers in accessing eye care?

Yes. We address this in all our projects, but in Mozambique we have specific initiatives focusing on inclusive masculinities. It is not enough to work only with women to improve their access to eye care. Men also need to be involved, because there are cultural and patriarchal barriers that need to be addressed.

Together with local associations, we work with men so that they understand that eye health is a right for every member of the family. In some places, for example, women still have to ask men for permission to go to the doctor.

What happens after a diagnosis?

The difficulties do not end there. Accessing surgery may require having enough resources to travel to a city with an ophthalmology service and staying there for at least one night for the procedure and the initial post-operative care.

For many women, having to leave their family and children for those days is a significant barrier. That is why we also work with men so that they can take on those responsibilities while women receive the treatment they need.

In this new phase, you also want to strengthen the Foundation’s social base. How can members of the public get involved?

This year, to mark our 25th anniversary, we have organised an initiative for the public on World Sight Day, 8 October. It will be a symbolic action in Plaça de Catalunya, where we will cover and uncover the eyes of several statues to explain what the right to sight means in different situations.

What do you want to convey through this initiative?

The idea is to show what regaining sight can mean, for example, for a child or for a woman who faces barriers to accessing eye care. We invite everyone to take part, follow our work and join this growing community of people who understand what being able to see means and who are willing to commit to this cause.