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Macular Society’s call for more funding of research into macular degeneration

28 June 2016

Statement from the Macular Society

Charity’s landmark report exposing lack of investment in age-related macular degeneration (AMD) is supported by more than 60 of the UK’s foremost sight researchers, ophthalmologists and institutions – Situation described as ‘urgent’

It is a disease with devastating and far-reaching consequences for both patients and their families, and the number of diagnoses is on the rise. But age-related macular degeneration (AMD) still has a low priority when it comes to publically funded research and investment.

The Macular Society, the national charity for anyone affected by central vision loss, believes there is a duty on publically funded bodies to put more resources into AMD research. The Society has launched a landmark research case calling for more funding and scientific investigation into the condition, which is forecast to affect 1.3 million people in the UK by 2050.

Cathy Yelf, chief executive of the Macular Society, is urging researchers into blinding disease, charities for people with blinding diseases and people who are blind or visually impaired to speak out about the low levels of funding for research into sight loss and AMD.

Cathy said: “Macular degeneration represents a huge cost, care and societal burden, yet it does not receive a level of research funding proportionate to its impact.”

“Alongside the devastating personal consequences of sight loss, AMD costs the UK £1.6bn annually. The number of people with AMD is expected to double by 2050.   It’s an urgent public health issue.”

AMD is the third most common cause of sight loss globally and the most common in the developed world. However, the report reveals that only one fifth of one percent of public research funding was directed at AMD in 2014. Government and Wellcome Foundation sources funded £4.5m and the UK sight loss charity sector, which has an income of £750m a year, funded only £1.5m of AMD research.

The charity’s report Age-Related Macular Degeneration: Collaborating to Find a Cure is the result of extensive expert collaboration and has already received official endorsement from many of the UK’s leading institutions and ophthalmologists and researchers including The Royal College of Ophthalmologists and UCL Institute of Ophthalmology.

Professor Carrie MacEwen, President, The Royal College of Ophthalmologists said: “AMD is the commonest cause of blindness in the developed world and the numbers of patients affected will continue to grow.  It must be considered a research priority in order to identify ways to prevent the development of AMD and to treat those affected as early and as effectively as possible. Loss of vision is associated with falls, depression and loss of independence – especially in the older age groups.”

It is hoped the report will encourage more charities to consider contributing some of their resources to medical research.

Mercy Jeyasingham, chief executive of VISION 2020 UK, said: “We fully support the Macular Society’s report. The increase in incidence of AMD is an important public health issue. It is vital that we increase funding for medical research into eye health to help us improve our understanding of eye diseases, which have a devastating impact on the lives of people affected.”

The report recommends bringing researchers together in a unified approach to AMD research, and securing a new funding model to support this research.

Quoted in the report, Phil Luthert, Director of the UCL Institute of Ophthalmology, said: “Age-related macular degeneration is increasingly recognised as a colossal healthcare challenge and, despite major advances in genetics, epidemiology, pathogenesis and imaging, we still don’t understand how to prevent early disease progressing to blinding disease in the form of choroidal neovascularisation (CNV) or geographic atrophy.”

Over coming months, the Macular Society will continue to share and promote its research case to targeted stakeholders throughout the UK.

Among the existing 60 plus endorsements for the report are Moorfields Eye Hospital, Oxford Eye Hospital, Southampton General Hospital as well as Winfried Amoaku, Clinical Associate Professor and Reader in Ophthalmology and Visual Sciences from University Hospital, Queen’s Medical Centre in Nottingham and Professor Usha Chakravarthy, Queen’s University Belfast.

Also endorsing the report is Professor Heping Xu, of the Wellcome-Wolfson Institute of Experimental Medicine, Queen’s University Belfast. He said: “It is a real pity that there is so little investment in AMD research in the UK despite the huge social and economic impacts of the disease. It is good to know that UK scientists have been doing extremely well in AMD research despite the funding restrictions. I fully agree with the charity’s approach to tackle this devastating sight-threatening problem.”

Cathy added: “We’re thrilled to be collaborating with such prestigious professionals and institutions to position AMD higher on the research, policy and public agendas. We’re currently working to gain further support and momentum with additional key influencers, inviting them to join us in our mission to raise awareness, secure funding and, ultimately, find a cure for this devastating disease.”

  1. For a full copy of the report, Age-Related Macular Degeneration: Collaborating to Find a Cure, email Graham Newman at graham.newman@macularsociety.org
  2. The launch of the release falls in Macular Week, aimed to raise awareness of macular disease. Macular Week runs from June 27 to July 3.
  3. Macular degeneration causes a loss of central vision. The macula is the central and most sensitive part of the retina.  People with advanced macular degeneration cannot read, drive or recognise faces.  Half of all people in the UK registered as sight impaired or severely sight impaired have macular degeneration.
  4. The Macular Society is the national charity for anyone affected by central vision loss. Our 22,000 members make us the biggest patient group in the sight loss sector and the voice of people with macular conditions. We provide free information and support to improve lives and ensure no one has to face macular degeneration alone. We have 300 Macular Society support group around the UK and beyond. We fund research so that one day we can overcome macular degeneration.