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Business & Profession Retina, Business and Innovation, Health Economics and Policy, Education and Training

Under the Umbrella

I don’t need to tell readers how significant an issue vision loss poses to the world – it’s something we see every day working in ophthalmology. The work ophthalmologists do is crucial to addressing this, but there are ways in which we can further improve access to diagnosis and treatment within the retina community and across the range of ophthalmic disciplines. Retina International is a global umbrella of 43 patient-led organizations on all continents, we work to improve access to diagnosis, care and treatment for those living with retinal conditions. We do this by embracing three major pillars designed to support a continuous pipeline of treatments and cures for retinal diseases: patient education and outreach, participation and representation in advocacy and policy development, and by fostering research and innovation.

Spreading the word
 

Retina International was a voluntary organization founded in 1978 by people living with rare and inherited retinal diseases who believed genetic research held the key to discovering treatments for significant unmet needs. It started with patients who were developing fledgling organizations that met at a conference every two years with ophthalmologists, scientists and patient organizations from many countries to learn about recent advances that, in turn, informed new scientific approaches.

Over the years, there has been much cause for optimism. Most notably, patient groups emerged to fund and support research and Retina International began to disseminate scientific information. Retina International brought like minded groups together to discuss issues pertinent to them. As research evolved in rare retinal disease the organization began to support patients  affected by more common retinal diseases and as we engaged with more organizations the innovations in genetic research for IRDs and the emergence of treatments for AMD resulted in the growth of  the retina community. All of this led to a decision by members of Retina International to formalize into a secretariat in Dublin in 2016, bringing together the community to ensure that all members worked together on consensus driven policy actions and coordinated communications in order to have the best chance of achieving our collective goals. Collaborating with all stakeholders, as a community, and ensuring that we had robust data to inform policy actions remains paramount for Retina International.

Our goals are fundamental: to find ways to promote retina research and innovation so that patients gain access to a timely diagnosis leading to better care and treatment leading to better outcomes for all. Our objectives have evolved as the expectations of patient organizations at a national, regional, and global level have shifted. For positive change to occur, we need a strong narrative and consensus between researchers, clinicians, payers, policymakers, and patients. We believe we can develop policies that are cohesive, coordinated, can be implemented, and really makes a difference by avoiding a siloed approach and working together.

Confronting issues
 

Having a patient explain their condition and individual needs is not enough to ensure action is taken and policy changes. What is needed is an explanation of not only the condition and its impact, but also the cost of dismissing it: the burden of the disease, the promise of innovation, and the need for access to the outcome of that innovation. That is what Retina International does.

Our focus right now is on supporting organizations that fund research and innovation in the retinal space to understand where their voice, experience and perspective fits in the research continuum through bespoke educational initiatives. This allows us to foster these organizations through their own networks and countries to ensure that the infrastructure for retinal research is robust. People join our member organizations so that they can change lives through research, and critically that they can access emerging treatments to address their unmet need. Our member organisations understand the process of ‘curing’ blindness is a journey from bench to bedside – from concept to delivery - and each part of the journey needs patient involvement and engagement.

“Educate, Participate, Innovate”
 

Our straightforward tagline is meant to educate our membership. When we talk about education, we refer to explaining the process of innovation and development, understanding what the retina patient community needs, and demonstrating how researchers, patients, and policymakers can work together. An important part of that is knowing when something doesn’t work for patients and addressing it. We have an obligation to support patient preferences by educating people on patient-reported outcome measures and endpoints and their importance in clinical trial outcomes. Then there’s education to enable participation; when you sit on an advisory board, you should understand what’s being asked and what you need to know to answer. We have members who sit on government decision-making committees and their knowledge must be continually updated to correspond with a highly dynamic space.

Because we appreciate the importance of staying up-to-date and aware, we generate and analyze real world evidence from our membership to understand its impact of retinal disease on the community. Our approach is scientifically oriented and informed by economic modeling and focus groups. With our members we develop surveys to address fundamental questions, the results support advocacy communications and educational initiatives.

Our Retina International Education Hub is a three-month course for patients that includes modules on genetic testing, diagnostics, ethics, patient-reported outcome measures, registers, health futurism, regulation and health technology assessment. This course prepares our patient community with the tools to be heard. Patients are now engaging in the community and in decision-making at a high level. To do this, their jerseys must be left at the door; they must consider the bigger picture instead of focusing on how their condition impacts them or any individual member of their community.

Hope for the future
 

There are many reasons for optimism. In the IRD space, I think the advent of durable gene therapies is a game changer. Gene therapy is here; it’s complicated and there’s still a lot to learn, but it’s here nonetheless. There’s also really interesting work in gene-agnostic approaches to IRDs, which offer hope to those with little light perception. Gene editing, cell therapies and other advanced therapies are in the pipeline for IRDs. At the same time new methods of delivering treatment for AMD, GA and DME are emerging that could reduce treatment burden on patients, caregivers and HCPs. Crucially, we must recognise that innovation will require more capacity for delivery and as a community we must discuss how these breakthroughs fit into general treatment frameworks as we move forward.

Retina International believes that early detection is the key to better outcomes for patients and society at large. We are often shocked at the poor understanding the public has about eye conditions, particularly at risk groups. Patients arrive in clinics with bleeds that are too far progressed for any sort of intervention – an all too familiar scenario to readers in the context of diabetes related eye disease. The time it takes for someone to arrive at the ophthalmologist’s doorstep is too long in many countries and often requires the navigation of complex routes. This has to be addressed. Any avoidable loss of sight is unacceptable to our community.

Screening for diabetic-related eye diseases is effective, successful, and reduces the incidence of sight loss where programmes have been implemented. Unfortunately, they have not been implemented everywhere. We’re working with stakeholders to help decision-makers understand that systematic screening can prevent sight loss and reduce societal burden. New and innovative approaches could be applied.  AI technologies are emerging as potential diagnostic and monitoring tools.

There is much discussion about the potential to detect neurological disease through retina screening. Research is being undertaken and discussions are taking place. Unfortunately, science is moving at a pace that is not consistent with corresponding policy action. We know technology is advancing and we need to consider what the future of ophthalmic care will look like and start to think about how we advocate as a community for these future needs.

I’m not a scientist – I’m not a person who has to decide on clinical guidelines and pathways – but I am a person who, looking from the outside in, sees all of the innovation that could benefit our community. The incredible health care professionals, the researchers and inventors, the technicians and engineers, and the policy makers themselves who want to find a path forward to better care. We very much see our organization’s role as one that encourages discussion and looks to this community to find ways of working collaboratively.

New Beginnings
 

A major milestone for Retina International was registering as a charity in Ireland, the first international charity to do so.  The Irish Charity Regulator provides robust guidance on governance and this was important to Retina International and our members. Good governance, a clear and aligned strategic plan and clear objectives as well as a global multicultural Board of Directors made up of volunteer patient representatives bring significant professional expertise to guide our evolution as a global organization.

A call to action
 

Ophthalmologists play a critical role in all of Retina International's programmes of work, as advisors, collaborators and educators. We’ve been fortunate in the retinal space because many have been involved in both research and engaged with the patient community from the beginning of their careers. Their support and guidance through our international Scientific and Medical Advisory Board has been immense. However, I also think more ophthalmologists could be involved in collaboration and in developing calls to action that can lead to better environments in which to deliver care. It’s not easy; my experience has been that ophthalmologists are fighting for their patients every day in the clinic, often dealing with waiting lists up to two years long, meaning they never have enough time to consider advocacy.

I have seen the great energy and enthusiasm and ideas of young ophthalmologists disappear under the weight of healthcare systems bursting at the seams. We don’t want to lose that energy and those ideas and Retina International strongly believes that the ophthalmic community at large needs to collaborate in a structured way to address current and future challenges. We will continue to work with the ophthalmic community wherever possible to ensure this community is listened to and essential support provided.

Our key message for ophthalmologists is to engage with us and tell us what they need.
 

My Road to Retina International
 

My background is in public affairs. I started off in journalism, studied communications, and worked in that area until I was inspired to go into political communications. I wanted to work in health advocacy as I had volunteered with disability groups as a student, I was familiar with that kind of space and found it interesting.

At the age of 23, I had an eye test as part of my driver’s license application and was told that there might be a problem with my retinas. I was referred through a series of different appointments with specialists and ultimately diagnosed with retinitis pigmentosa, which was a big shock.

My advocacy experience and my desire to move into political advocacy coalesced in a public affairs executive job for a small charity called Fighting Blindness. The organization looked at the root of issues in ophthalmology and rare disease and funded research in niche areas that didn’t get much traction elsewhere.

At Fighting Blindness, we looked at ways to raise awareness of issues concerning ophthalmology, with a particular focus on the retina and IRD. This coincided with the emergence of AMD therapeutics, which made me realize that the real challenge I saw was in patients’ actually accessing treatment. We had always focused on ensuring that innovation was supported by the community and that care pathways were developed – but we also needed to ensure that people could access the innovations we supported, which was my main role. This quickly became Europe-centric with a focus on public policy, public health, and research within the ophthalmic and rare disease space. Eventually, I became the CEO of Fighting Blindness, and then, in 2016, joined Retina International.

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About the Author
Avril Daly

CEO of Retina International, Dublin, Ireland.

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