Written evidence submitted by Fight for Sight (BER0046)

Key Messages

• Eye research attracts only 1% of funding from public funders (NIHR and UKRI).
• UKRI spending on eye research does not reflect the burden of disease, prevalence or unmet need.
• The lack of capacity in hospital eye services could create an increasing public health risk unless an increased priority is given to all eye research grant funding to ensure that…
• An uplift in public grant funding of eye research of at least 2% of overall public grant spend is needed to ensure that the development of cutting edge technologies are integrated with the NHS for patients

Introduction

Fight for Sight is the leading UK charity dedicated to funding pioneering research to prevent sight loss and treat eye disease.

The charity currently invests over £8m in 160 research projects at 49 different universities and hospitals across the UK.

The organisation’s research covers both common and rare eye diseases and conditions including age-related macular degeneration, glaucoma, inherited eye diseases and those linked to other conditions like stroke and diabetes.

Over the course of Fight for Sight’s history the charity’s achievements include:

• The creation of the corneal transplant service
• New treatments to save the sight of premature babies
• Funding the research that led to the world’s first clinical trial of gene therapy for choroideremia, an inherited condition that causes blindness in men
• The design of a new eye test that can detect the early stages of sight loss in age-related macular degeneration (AMD).
• The identification of new genes responsible for glaucoma, retinitis pigmentosa, keratoconus and other corneal disorders
• Supporting the development of Peek, a portable eye examination kit that uses a unique smartphone-based system for eye testing anywhere in the world.

In the context of the dual support system, this response will focus on funding administered by UKRI. This funding is allocated via a competitive peer review process designed to fund the best science.

Eye research funding landscape within the UK

Approximately 1% of government medical research grant spending is on eye research. In 2016/17 NIHR and UKRI spent £20.3 million on eye research grants of a total of 1.7 billion on grants[1] .

While we have seen an increase in absolute funding over this period over the last 5 years, this represents 1% of overall funding over this period.

Figure 1: 5 year spend on eye research across NIHR and selected research councils

Figure 2: Shows the percentage of overall research spend on eye research by NIHR and UKRI over the past 5 years

When inflation is taken to account over this period there has been a decrease in research funding in real terms.

If  thisis compared to other areas of funding for health conditions of a similar prevalence, in 2016/17 dementia related research received £83.1m from NIHR and UKRI more than 4 times as much as eye related research, and cancer research received £269m from NIHR and UKRI in 2015/16 more than ten times the amount of eye research.

The top 15 sight loss charities in the UK spend a total of £422m in 2016/17. Of this amount only £10.2m was committed on medical research representing only 2.5% of the income of these charities[2].

The Wellcome Trust committed £10.4m on eye related grants in 2016/17 out of a total grant commitment of £764m. This represents 1.3% of Wellcome Trust grant commitments[3].

This demonstrates the shortfall in research commitments from both the public and charities for eye research.

Increasing need for more research for people living with eye disease

Surveys have shown that sight is the sense that people most fear losing with 86% of people in the UK valuing it more than any other sense[4] . When compared to other health conditions it was also found that people are more afraid of losing their sight than of developing Parkinsons disease, heart disease or dementia[5]

It is estimated that there are 2 million people living with sight loss within the UK. However, over 1 million are thought to have an eye condition that cannot be prevented[6]. There is a significant unmet need within this as there are a number of conditions where there are no treatment options currently available.

In the context of the UK’s ageing population the number of people living with sight loss is due to grow substantially with an estimated 4 million people living with sight loss by 2050[7].  The prevalence of the three leading causes of sight loss AMD, glaucoma and diabetic retinopathy is due to increase by 60%, 44% and 27% due to the ageing population[8].  Ophthalmology represents the second highest condition area for outpatient appointments within the NHS with approximately 8 million appointments and almost 270,000 A&E presentations[9] in 2016/17. The aging demographic is likely to stretch ophthalmology services that are already strained to breaking point.

Sight loss can have a devastating effect on the lives of those who livie with it. Approximately 75% of working age people living with a visual impairment are not in work. This is figure is higher than any other disability[10]. People over the age of 65 living with sight loss are 3 times more likely to suffer from falls with NICE estimating that falls costs the NHS £2.3bn[11]. Mental health issues are also a big factor for people living with sight loss, with the “Depression in Visual Impairment trial” showing that 43% of attendees at low vision clinics were dealing with depression[12], one of the highest incidences for any health condition or disability.

The RNIB estimate that the total of cost of sight loss to the UK economy as £28 billion pounds in direct and indirect costs[13]. This figure includes the direct costs of treatment and social care services for people living with sight loss, but also indirect costs such as loss tax revenue for people not in work.  This cost is higher than other condition areas of similar prevalence such as £26bn billion for dementia[14], £23bn for diabetes[15] and £16.4bn for cancer[16].

Considering the burden of eye disease and conditions, the prevalence, unmet need and the impact on the economy of sight loss, there is a significant underfunding of eye research that could help to address these challenges.

Fight for Sight are calling for an increase in public funding of eye research to at least 1% (£20m in real terms) by 2022.

September 2018