Six million people in the UK are estimated to be living with sight-threatening eye conditions, with 2.5 million individuals experiencing some form of sight-loss and around 350,000 people registered as blind or partially sighted. The number of people living with sight-loss is estimated to increase by 40% by 2050. Age-related macular degeneration (AMD) is the most common cause of blindness among adults in the UK, with approximately 1.2 million people having this condition in its early stages and ~700,000 people living with late-stages of the disease. AMD causes the loss of central vision, which affects a person’s ability to drive, read, write, and recognise faces. AMD largely affects older individuals, with more than 1 in 10 people over 80 years old experiencing end-stages of the disease. With an ageing population, AMD is fast becoming a major global issue. Despite old age being a critical risk-factor for blinding disease, in the UK more than 400,000 individuals in the UK between the ages of 18 and 60 also have some form of sight-loss. Furthermore, almost 250,000 children under 14 years of age in the UK have conditions that cause sight impairment or blindness. Together, these figures translate to substantial costs for the NHS and the wider economy, with NHS and social care services for vision problems costing more than £3.9 billion a year and an estimated annual economic cost of £25.2 billion. These huge figures are a consequence of only one in four blind or partially sighted people of working age being in employment. Furthermore, 1 in 10 hospital outpatient appointments are for eye services and more than 800,000 inpatient procedures related to eye health are performed each year. A large proportion of these procedures include regular eye injections to manage the neovascular or ‘wet’ form of end-stage AMD. A large group of individuals also suffer from other forms of retinal diseases, including rare and inherited conditions. Although these are far less common than AMD, when grouped together, they affect many individuals across the life-course. These rare conditions also have poor outcomes and largely lack any meaningful treatments.
As eye researchers at the ÃÛÌÒTV, we want to understand the causes of eye diseases and develop novel treatments for patients, many of whom are cared for by clinical colleagues at the Southampton Eye Unit. However, this work is dependent on securing competitive grants from a limited pot of available funding, which in part has impeded the development of meaningful sight-saving treatments for patients. The aim of this policy project was to initiate conversations with stakeholders, including eye research charities and UK Research Councils to obtain information that will enable us to better understand how eye research is funded in the UK. We also aim to raise public awareness of the growing need for investment in eye research through social media.
Our close association with several eye charities has enabled us to build a partnership to obtain insightful data for this study. Through discussions with the Sight Research UK (formerly the National Eye Research Centre), the UK Macula Society and Gift of Sight Appeal, it became apparent that the vast gap between NHS expenditure on vision problems and investment in eye research was a shared concern for these charities. We obtained data from the annual reports of the UK’s leading eye charities that fund research (Retina UK, Macula Society, Fight for Sight, Sight Research UK and Moorfield’s) and non-research eye charities (RNIB, the Guide Dogs for the Blind Association, Seeability, Blind Veterans and Sense). The latter offer critical support and advice to blind and partially sighted people but do not currently fund any science research into eye diseases. We found that the average annual expenditure of eye research charities was £1.7 million, compared to £54 million by the leading non-research eye charities. The combined average annual expenditure of the leading eye research charities is £8 million per year, compared to £271 million by non-research eye charities.
Working with one of our project partners, Sight Research UK, we discovered that nearly one third of people erroneously believe that RNIB funds medical research, whilst 16% of people were under the impression that Guide Dogs for the blind also invest in eye research (YouGov poll 2020). Furthermore, less than 10% of polled individuals had heard of two of the major eye research charities Sight Research UK and Fight for Sight. Together, these findings highlight the need for greater public awareness of UK eye charities and how they invest funds to support eye research.
Using the UK health research analysis 2018 online tool, we found that £32.6 million was invested in eye research in 2018, of which one third was provided by research charities, including the top five eye research charities, along with larger charitable organisations including the Wellcome trust. The remaining two thirds of funding came from government bodies, including the Medical Research Council (MRC), BBSRC and Innovate UK. With £2.56 billion spent on funding health research in 2018, this equated to 1.3% of total funding invested into eye research. This figure was considerably low when compared to the 19% and 6% of total research funding spent for the same period on cancer and cardiovascular diseases, respectively. Furthermore, 2018 funding into eye research equated to only only 0.1% of the total economic cost of vision problems, whilst the UK invested 6.4% of the economic cost of cancer and 1% of the economic cost of cardiovascular disease, back into research for these conditions.
The Sight Research UK YouGov poll also showed that 30% of people admitted to not knowing very much about eye disease and sight loss, which corresponds with the comparatively low levels of public donations to eye research charities. As part of our project, we are creating a video that emphasises the need for better investment into eye research. The video will also highlight the positive impact of sight-saving treatments on patients. In addition, we will showcase the exciting on-going research within the Vision Group at the ÃÛÌÒTV.
Postdoctoral Research Fellow at the ÃÛÌÒTV