Press Centre

Charities unite in battle to save Brighton pensioner's sight

Summary: Press release regarding wet AMD treatment campaign

• Notes to editors

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The Royal National Institute of Blind People (RNIB) and the Macular Disease Society (MDS) have joined forces to help a man win a desperate battle to save his sight, as his local NHS trust is refusing to pay for the sight saving treatment he urgently needs.

Colin Valder, 77, from Brighton, faces an agonising race against time to save his sight, following a refusal by Brighton and Hove City Primary Care Trust to pay for vital treatment that could stop him from going blind.

RNIB and MDS have taken up Colin’s case and are making an urgent appeal to the PCT to reverse its decision.

A distraught Colin, who is also undergoing treatment for prostate cancer, said: “The thought of losing my sight absolutely terrifies me. I’m angry as treatments are available, but is seems saving money is more important to the PCT than saving people’s sight. I just hope the PCT will have a change of heart before it’s too late for me.”

Colin has the sight threatening eye condition wet Age-related Macular Degeneration (AMD) in his right eye and dry AMD – for which there is no cure and will lead to blindness over time - in his left eye. With the sight in his right eye rapidly deteriorating, Colin is making an urgent appeal to his PCT to agree to fund his treatment on the NHS.

Fearing that the wet AMD will spread to his left eye - patients with the condition have a 50 per cent chance of it developing in their second eye - Colin has been forced to raid his life savings for private treatment. But with the money fast running out, he will not be able to pay for a full course of treatment.

Having had his initial application for funding rejected, Colin is now appealing to the PCT’s Exceptions Committee, but he must prove ‘exceptional circumstances’ to qualify for treatment – a process that can be long and incredibly stressful.

Sight saving drugs Lucentis and Macugen have been licensed for the treatment of wet AMD, but a restrictive funding policy, adopted by many PCTs, has meant that only a small minority of patients have qualified for treatment.

RNIB Campaigns Manager, Barbara McLaughan, said: “This is a very distressing situation for Mr Valder to be in. Many patients are facing a race against time to save their sight because PCTs, like Brighton and Hove City, are operating such a restrictive funding policy.

Barbara added: “It’s shameful that patients are having to jump through hoops to prove they deserve sight saving drugs on the NHS. The only alternative is to pay for private treatment - which for many is not an option - or risk blindness. Rather than turning its back on Mr Valder, the PCT could throw him, and many other patients, a lifeline by adopting a much fairer policy.”

Under the PCT’s funding policy, 80 per cent of patients with wet AMD are automatically excluded from treatment, as they must first have gone blind in one eye, before being considered for treatment in their second eye.

But draft guidance, issued recently by the National Institute for Health and Clinical Excellence (NICE),* means Colin would automatically receive treatment, if this was implemented by the PCT. It recommends that the sight saving drug Lucentis should be available to patients with wet AMD, whether it is their first or second eye that is affected. While the draft guidance has already been adopted by some PCTs, others, like Brighton and Hove City, are refusing to do so.

RNIB and MDS are calling on the PCT to throw a lifeline to Colin, and other patients throughout Brighton and Hove, by agreeing to switch to the new draft NICE guidance now, rather than waiting for final guidance later in the year.

Tom Bremridge, Chief Executive of the Macular Disease Society, said: “This is a disgraceful way to treat Mr Valder and clearly, it is causing him a great deal of anguish. The PCT’s decision not to fund his treatment is putting Mr Valder at unnecessary risk of losing his sight. Given the extra cost of supporting people who go blind, PCTs are mistaken in thinking they will save money by denying patients treatment for AMD.”

The RNIB and the Macular Disease Society have launched 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.

[End of press release]

Notes to editors

For further media information / to interview an RNIB spokesperson or Mr Valder, please contact Christina Nicolaidou, RNIB Press Office, on 020 7391 2223 (out of hours mobile: 07968 482812) or email christina.nicolaidou@rnib.org.uk

Revised draft guidance issued recently (14 December 2007) by NICE, recommended sight saving drug Lucentis should be made available for patients with wet AMD, whether it is their first or second eye that is affected. Guidance previously issued by NICE meant 80 per cent of patients would not have been able to access treatment at all, with the remaining 20 per cent having to have lost the sight in their first eye, before being considered for treatment in their second eye. Final guidance from NICE is expected in Spring 2008.

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 the RNIB website.

RNIB and MDS Action for AMD Treatment (AAT) advocacy service was set up to help patients access treatments for AMD. The AAT service helps patients who are being blocked from getting anti-VEGF treatments Lucentis and Macugen on the NHS.

AMD is the leading cause of sight loss in the UK and wet AMD 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 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’.

In their second draft guidance, published on 14 December 2007, NICE recommend Lucentis for the treatment of wet AMD if the eye to be treated has best-corrected visual acuity of better than 6/60. In RNIB's view this threshold should be lowered as patients whose sight is equivalent to or worse than 6/60 can still benefit greatly from treatment. RNIB is calling for all patients, whose clinicians decide that they are likely to benefit from anti-VEGF treatment, to have unquestionable access to it.

Content author: pressoffice@rnib.org.uk

Last updated: 23/05/2008 14:55