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RNIB backs legal action against PCT

Summary: PCT accused of unlawful ban on sight-saving treatments

• Notes to editors

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The Royal National Institute of Blind People (RNIB) is backing legal action against Warwickshire Primary Care Trust, which it believes is operating an unlawful blanket ban on providing sight-saving treatments. Today Mr Justice Underhill confirmed a judicial review of the Trust’s policy is expected to be heard in the High Court in July.

The three claimants all suffer from the sight-threatening condition wet AMD (age-related macular degeneration): Mr Raymond Liggins, aged 76 from Nuneaton, Mrs Jean Middleton, aged 78 from Kingsbury and Miss Patricia Meadows, aged 65 from Stratford-Upon-Avon. RNIB, the UK’s leading sight loss charity, is backing the case as part of its on going ‘Save Our Sight’ campaign, which aims to secure sight-saving treatment on the NHS for all patients.

Wet AMD is the leading cause of sight loss in the UK and if left untreated, can lead to blindness in as little as three months – so RNIB is calling for urgent action. Steve Winyard, RNIB’s Head of Campaigns, said: “Warwickshire PCT claim to be operating a policy where they consider treatment on an individual basis. But as far as we understand they have not funded a single case of anti-VEGF treatment, rejecting over 50 requests by patients in their care. This policy effectively condemns all wet AMD patients in their care to blindness.”

A distraught Raymond Liggins, who cares for his wife Olive since she had a stroke, said: “The PCT’s policy beggars belief. It’s morally wrong to let people go blind when there are treatments available. My wife depends on me. How can I care for her if I go blind? If I lived with my son in Scotland I’d get my treatment free on the NHS. So why is Warwickshire PCT forcing me to fight for my sight?”

Patricia Meadows is responsible for the care of her brother who has Down’s Syndrome. Miss Meadows commented: "The PCT's refusal to fund my treatment has completely turned my world upside down. My brother depends on me for his day-to-day care, so I dread to think what would happen to him if I'm left to go blind. Not being able to see the precious things in life like my family and friends would destroy me."

RNIB is supporting these individuals, covering the legal costs of two of the claimants, and instructed national law firm Irwin Mitchell in the hope that the court will force Warwickshire PCT to revise its policy and treat them and other patients. This is the first time the charity has backed a case at the High Court.

Legal firm Irwin Mitchell successfully fought for cancer sufferers to get the drug Herceptin - the first case of its kind. Mhairi Walker from Irwin Mitchell said: "As with many drugs prescribed by doctors but denied to patients by the accountants working within PCTs, it is essential that the priority in any decision taken is the welfare of the patient rather than the balance sheet of health authorities. We hope that this case will once again highlight the injustice felt by many people desperate to save their sight and in some cases their lives."

The PCTs funding policy directly contradicts draft guidance issued (2 April 2008) by the National Institute for Health and Clinical Excellence (NICE).

Steve Winyard continued; “Patients in Scotland have been receiving free treatment for a year and patients in Northern Ireland and Wales will be receiving treatment by Autumn 2008. There is nothing stopping PCTs across England doing the same and many are funding patients based on the clinical criteria set out in the draft NICE guidance. But Warwickshire persists in denying treatment to patients in its care. They are forcing people to either find the money to pay for the drugs privately or go blind.”

Mrs Middleton, the third claimant in the case added: “There’s not much time left to save my sight and I know there are many more people in Warwickshire facing the same fate. The situation is desperate. I can only hope Warwickshire PCT will have a change of heart.”

The Trust still has time to reconsider its position, before the case is heard in the High Court in July.

[End of press release]

For further media information or to interview case studies or an RNIB spokesperson, please contact Yashoda Sutton, Bill Alker or Andrew Cooper, RNIB Press Office, on 020 7391 2223 (out of hours mobile: 07968 482812). Reference 13.

Notes to editors

Wet AMD and the NICE appraisal process

1. Wet AMD is the leading cause of sight loss in the UK and can lead to blindness in as little as three months. 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. 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.

3. 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.

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’.

5. Warwickshire PCT does not fund anti-VEGF drugs despite draft guidance issued (2 April 2008) by the National Institute for Health and Clinical Excellence (NICE), which recommends treatment to be provided to the vast majority of patients, whether first or second eye is affected.

6. On 11 June 2007 the Scottish Medicines Consortium approved Lucentis for the treatment of wet AMD (Macugen was approved in August 2006) making treatment free on the NHS in Scotland.

RNIB

7. 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.

8. 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.

Content author: pressoffice@rnib.org.uk

Last updated: 03/07/2008 18:31