Peter Mulvie, 84, of Golders Green, is just one of several patients being supported by RNIB in their bid for treatment from Barnet PCT (Primary Care Trust). He is blind in his left eye and has the aggressive eye disease wet age-related macular degeneration (wet AMD) in his right eye. Wet AMD can lead to blindness in as little as three months if left untreated.
Mr Mulvie, a grandfather of six, said: "My eyesight is getting worse by the day but Barnet PCT has totally ignored my application for treatment. I live on my own but I might be forced into a care home if I don't get treatment. I am sick with worry that Barnet is letting me go blind and I will never see my grandchildren again."
Wet AMD can be treated through anti-VEGF drugs, including Lucentis. Most PCTs in London - including Camden, Brent and Harrow - fund Lucentis for all who need it. Yet Barnet PCT carries out an extremely restrictive funding policy which means it has one of the worst records on funding treatment for wet AMD in the capital.
Barbara McLaughlan, Campaigns Manager at RNIB, said: "Barnet PCT is putting Mr Mulvie into an appalling situation by forcing him to choose between spending his life savings on treatment and going blind. RNIB is committed to eliminating avoidable sight loss - that's why we are backing all wet AMD patients in Barnet to get sight saving treatment immediately and without question."
RNIB supported three pensioners in their bid to get sight saving treatment from Warwickshire PCT in July. Following the case at the High Court, an agreement was reached between the PCT and Lucentis manufacturer Novartis. Other PCTs have since reached their own agreements with Novartis and are now funding wet AMD patients.
Barbara McLaughlan said: "Barnet PCT has previously said that it will not fund because they cannot cap the costs of treatment. The Warwickshire agreement means that argument is no longer valid. It should change its cruel and heartless policy now."
The National Institute for Health and Clinical Excellence's (NICE) most recent draft guidance, issued in April 2008, announced that all PCTs in England will soon have to fund the sight-saving drug Lucentis for patients with wet AMD. NICE's final and legally binding guidance on anti-VEGF treatments is currently at the appeal stage and should be published later this year.
In England, more than two-thirds of PCTs are already providing sight-saving treatment to wet AMD patients who need it. Others still carry out unacceptably restrictive funding policies. Licensed anti-VEGF drugs have been proven to successfully halt the condition, while Lucentis can improve sight in 30-40 per cent of patients.
RNIB and the Macular Disease Society run an 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 or the Macular Disease Society Helpline on 0845 241 2041.
Notes
1. AMD is the leading cause of sight loss in the UK and wet AMD can lead to blindness in as little as three months if left untreated. Each year 26,000 people in the UK develop wet AMD and approximately a quarter of a million people in the UK are thought to have the condition. People need prompt treatment if they are to minimise the risk of permanent sight loss.
2. Two anti-VEGF treatments are licensed for use in the UK: Macugen, marketed by Pfizer, was licensed for use in May 2006, and Lucentis, marketed by Novartis was licensed for use in January 2007.
3. 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.
4. The National Institute for Health and Clinical Excellence (NICE) is currently appraising Macugen and Lucentis. Until NICE issues final 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'. The appraisal began in February 2006.
5. 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, have a sight problem, RNIB can help. Call the RNIB Helpline on 0845 766 9999.
6. RNIB and The Macular Disease Society 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.
Royal National Institute of Blind People
View drug information on Lucentis; Macugen.
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