Recommendations published by NICE (the National Institute for Health and Clinical Excellence) today (14 June) will condemn 20,000 people each year in the UK to blindness, despite sight-saving drugs being available, says the Royal National Institute of Blind People (RNIB).
The charity is outraged at stringent preliminary recommendations that will deny anti-VEGF treatments to 80 per cent of patients with wet AMD (age-related macular degeneration) in England and Wales, and offer treatment to just one in five 'lucky' patients - but only after they've gone blind in one eye.
Today's preliminary recommendations, which are issued for consultation, come ahead of NICE's final decision on anti-VEGF drugs, Macugen and Lucentis, which is expected in the autumn.
Wet AMD is the leading cause of sight loss in the UK and affects a quarter of a million people. The condition can lead to sight loss in as little as three months and requires prompt treatment if sight is to be saved.
RNIB's Head of Campaigns, Steve Winyard, said: "This preliminary guidance is worse than we ever imagined it could be. Anti-VEGF drugs have the potential to halve the number of people going blind each year and patients in the UK who can benefit from them must all have them - and quickly! It is simply unacceptable that NICE is recommending that only a small minority of patients within England and Wales will benefit from these ground-breaking treatments. NICE must reconsider.
"The NHS is currently in surplus, yet England and Wales are now two of the only countries in Europe to deny its citizens sight-saving treatments. Just days ago Lucentis became the second anti-VEGF drug to receive approval from the Scottish Medicines Consortium (SMC), with Macugen approved in 2006. Negative NICE guidance could however see these positive decisions in Scotland reversed.
"NICE have received an overwhelming body of evidence that shows that these new treatments are cost-effective. NICE have simply chosen to ignore it and have added in dubious additional costs to balance the scales against a positive decision. Anti-VEGF drugs are cost-effective, it is much more expensive to support someone once they have lost their sight than to provide sight-saving treatment.
"NICE must re-consider and show that it makes its decisions based on cost-effectiveness rather than simply cost containment."
Tom Bremridge, Chief Executive of the Macular Disease Society said: "We are appalled by the NICE consultation document - limiting the treatment options to 20% of patients who would benefit is unjustifiable and allowing one eye to go blind before treating the second eye is cruel and totally unacceptable. Along with the RNIB, we will be submitting a response to NICE to encourage a re-analysis".
Anti-VEGF treatments - further information
Further information
For further media information or to interview case studies or RNIB spokesperson, please contact Christina Nicolaidou or Paul McDonald, RNIB Press Office, on 020 7391 2223 (out of hours mobile: 07968 482812)
Notes to editors
Every day another 100 people will start to lose their sight. There are around two million people in the UK with sight problems. RNIB is the leading charity working in the UK offering practical support, advice and information for anyone with sight difficulties. If you, or someone you know, has a sight problem, RNIB can help. Call the RNIB Helpline on 0845 766 9999 or visit www.rnib.org.uk
Wet AMD is the leading cause of sight loss in the UK and can lead to blindness in as little as three months. People need prompt treatment if they are to minimise the risk of permanent sight loss.
Anti-VEGF treatments target VEGF (vascular endothelial growth factor), a protein involved in the formation of new blood vessels. In the eye, high levels of VEGF can cause proliferation of blood vessels and fluid leakage. The number of times patients require treatment with an anti-VEGF drug varies - some patients require injections for two years or more.
Two anti-VEGF treatments are licensed for use on the NHS: Macugen, marketed by Pfizer, was licensed for use in May 2006, and Lucentis, marketed by Novartis was licensed for use in January 2007.
The National Institute for Health and Clinical Excellence (NICE) is currently appraising Macugen and Lucentis. Until NICE issues guidance, the Department of Health says it has 'made it clear to PCTs that funding for treatments should not be withheld simply because guidance from NICE is unavailable'.
Each year 26,000 people in the UK develop wet AMD. Approximately a quarter of a million people in the UK are thought to have the condition.
RNIB campaigns for PCTs to fund sight-saving treatments for wet AMD. The latest figures suggest that 80 per cent of PCTs are failing to fund anti-VEGF treatments. Even when they do provide funding, it is for very low numbers of patients. Very often, patients also have to fight to get treatment.
RNIB and The Macular Disease Society have launched an AMD advocacy service called Action for AMD Treatments. Any patient needing help accessing licensed anti-VEGF treatments should call RNIB's Helpline on 0845 766 9999.
Monocular vision causes problems with depth perception, decreases peripheral vision and therefore the visual field affecting eye/hand co-ordination, mobility and balance (thus also increasing the risk of falls).