RNIB calls for the rest of the UK to follow Scottish guidance on AMD treatment

The Royal National Institute of Blind People (RNIB) is calling on NICE (the National Institute for Health and Clinical Excellence) in England and Wales to follow the example set by the Scottish Medicines Consortium (SMC) today (11 June) which recommended that Lucentis be used in the treatment of wet age-related macular degeneration (AMD).

Lucentis is the second licensed anti-VEGF drug to be approved by the SMC for the treatment of wet AMD - the leading cause of sight loss in the UK - Macugen was approved in August 2006.

But in other parts of the UK, thousands of wet AMD patients continue to wait for guidance on these drugs to be issued - and in the mean time many are being refused the sight-saving treatments.

Positive guidance from NICE that mirrors the SMC decision will put a legal obligation on primary care trusts (PCTs) in England and local health boards (LHBs) in Wales to provide the treatments. In the interim, RNIB is urging PCTs and LHBs to provide speedy treatment to all patients who can benefit from it.

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.

Steve Winyard, RNIB's Head of Campaigns, said: "The SMC's decision is fantastic news for patients in Scotland. But wet AMD patients in other parts of the UK face an uphill struggle to get hold of the treatments. In England, as many as 80 per cent of PCTs refuse to fund them.

"Many PCTs are hiding behind the lack of NICE guidance and are giving a blanket 'no' when patients are recommended for the drugs, even though the Department of Health has said that PCTs must not do this.

"In the past week we have also heard that Australia has advised its health authorities to make these treatments available to patients. We have a real chance to turn wet AMD, which devastates so many lives, into a largely treatable condition - but only if NICE follows the examples of the SMC and Australia and approves these sight-saving treatments as quickly as possible."

Anti-VEGF treatments - further information

Further information
For further media information please contact Christina Nicolaidou or Paul McDonald, RNIB Press Office, on 020 7391 2223 (out of hours mobile: 07968 482 812). Ref: 36.

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
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.

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).

Last updated: 11 September 2009

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