Press Centre

Treatment at last for pensioners in High Court battle to save their sight

Summary: Press release regarding positive result from High Court case

• Notes to Editors

---

Today (Tuesday 22 July 2008) three elderly patients who took High Court legal action against Warwickshire Primary Care Trust (PCT) have won their battle to get sight saving treatment on the NHS. The PCT and drug manufacturer Novartis agreed a deal which means that the three claimants, Jean Middleton, Raymond Liggins and Patricia Meadows, will finally get treatment. As a result, the case which was backed by Royal National Institute of Blind People (RNIB), is expected to be settled.

Warwickshire PCT has agreed to change its restrictive funding policy on the sight-saving anti-VEGF drug Lucentis. This mean that patients across the region with the eye disease wet age-related macular degeneration (AMD) will now get NHS funded treatment.

RNIB celebrated the news as a victory for patients in Warwickshire who had, until now, been forced by the PCT to pay for private treatment themselves or go blind. Following the deal, RNIB is urging other PCTs across the country with restrictive funding policies to come to similar arrangements so that everyone who needs treatment for wet AMD can get it.

The three claimants, Jean Middleton, 78, from Kingsbury, Raymond Liggins, 76, from Nuneaton, and Patricia Meadows, 65, from Stratford-upon-Avon, have wet AMD which can lead to blindness in as little as three months if left untreated.

76-year-old Raymond Liggins cares for his wife Olive who has suffered a stroke. He feared that without treatment he would not be able to look after her and his own quality of life would be shattered. He said: “I'm over the moon - I can't stop smiling. This result means all the world to me and Olive. It's been one of the most stressful times that we have had to go through and we're so relieved it's over. We can now start making plans for our future. It's an absolutely fantastic result and wonderful for everyone who didn't think they had a chance of getting treatment."

Encouraged by Mr Justice Forbes in the High Court hearing to find a solution, Novartis and Warwickshire PCT have agreed to implement the latest draft guidance on anti-VEGF drugs from the National Institute for Health and Clinical Excellence (NICE). NICE draft guidance stipulates that most patients with wet AMD should get treatment with Lucentis and that Novartis will pay for drug costs beyond 14 treatments. The PCT and Novartis have agreed to an interim deal ahead of final guidance expected from NICE soon.

RNIB's Head of Campaigns, Steve Winyard, said: "We are absolutely delighted. This is a huge success, not only for Jean, Ray and Patricia, but also for patients across Warwickshire who are currently being denied effective sight saving treatments for wet AMD on the grounds of cost."

“It’s incredibly disappointing that it took High Court action before Warwickshire PCT changed their heartless policy. The battle has undoubtedly put unnecessary strain on the three people at the heart of this case and wasted public money. For other PCTs currently denying sight saving treatment to patients in their care, our message is clear: change your policy now. The treatments are available and the financial barriers are down so end this national scandal by giving patients in your care the treatment they need to save their sight."

78-year-old Jean Middleton, a former government officer for Birmingham City Council and special needs teacher said: “I can’t express how relieved and happy I am. I've been terrified of going blind and it's been a dreadful strain for me and my family to live with. At last I can look forward to the future and feel positive about it. I want to thank RNIB, the lawyers and my ophthalmologist Professor Gibson for everything they've done. I'm so pleased for everyone else in Warwickshire in a similar situation - now we won’t have to lose our sight."

Law firm Irwin Mitchell acted as legal representatives for the sufferers fighting to receive the sight saving anti-VEGF drugs. Mhairi Walker from Irwin Mitchell said: "We are delighted that the court action ensured that patients in the Warwickshire PCT catchment area receive the eye drug treatment that their NHS doctor recommends and has achieved what we set out to do.

"A few brave people who needed the treatment to prevent them going blind took the case to the High Court and fought for their rights, and the rights of others, to receive NHS treatment."

The judicial review of Warwickshire PCT’s policy began on 10 July at the High Court in London. On 14 July the case was adjourned by Mr Justice Forbes until 28 July, pending the outcome of the appeal against NICE's latest draft guidance on the use of anti-VEGF drugs to treat wet AMD. The judge also encouraged the PCT and the drug manufacturer to work together in the interim to find a solution.

The legal action against Warwickshire PCT has been backed by RNIB as part of its two-year long campaign to secure sight-saving treatment on the NHS for all those who need it. Anyone in Warwickshire who has previously been refused treatment is advised to go back to their doctor.

RNIB and the Macular Disease Society have an advocacy service called Action for AMD Treatment. 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]

For further media information or to interview case studies or an RNIB spokesperson, please contact Yashoda Sutton or Christina Nicolaidou, RNIB Press Office, on 020 7391 2223 (out of hours mobile: 07968 482812). Reference: 40

Notes to Editors

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. 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’. This appraisal began in February 2006. Once final guidance is published PCTs will be legally obliged to follow it.

5. In England more than half of PCTs are already providing sight-saving treatment to patients who need it, but many others still have unacceptably restrictive funding policies.

6. The Governments in Northern Ireland and Wales recently announced provision of £8million and £5million respectively to ensure that all patients with wet AMD who are likely to benefit from treatment will get it. In Scotland, anti-VEGF drugs have been available on the NHS for over a year.

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.

Content author: pressoffice@rnib.org.uk

Last updated: 22/07/2008 17:22