The Royal National Institute of Blind People (RNIB) is funding legal action against a Primary Care Trust for operating an illegal blanket ban on providing sight-saving treatments.
The charity is supporting 84-year-old Henley pensioner Dennis Devier, who suffers from the sight-threatening condition wet AMD (age-related macular degeneration), in taking action against Oxfordshire PCT.
The trust claims to have a policy that considers funding treatment for “exceptional cases” on a case-by-case basis, yet has not funded a single course of anti-VEGF drugs which treat wet AMD. This is despite more than 70 patients in their care needing treatment. Dennis is a war veteran, blind in one eye, cares for his disabled wife, has diabetes and Paget’s disease but is not considered “exceptional”.
RNIB is taking the unprecedented step of supporting Dennis in instructing national law firm Irwin Mitchell in the hope that this action will force Oxfordshire PCT to treat Dennis and other patients. Irwin Mitchell successfully fought, in the first case of its kind, for cancer sufferers to get the drug Herceptin. If the trust refuses to reconsider its position, it will have to defend its policy in the High Court.
Steve Winyard, RNIB’s Head of Campaigns, said: “Oxfordshire PCT has told Dennis that for him to be eligible for sight-saving treatment he must be an ‘exceptional case’. In RNIB’s view he is. Oxfordshire 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. Dennis has had his appeal turned down three times now. If Dennis isn’t an ‘exceptional case’, then my question to Oxfordshire PCT is, who is?”
Wet AMD is the leading cause of sight loss in the UK and affects 26,000 people each year. If left untreated, the condition can lead to blindness in as little as three months.
Steve Winyard continued: “Anti-VEGF drugs are licensed for use on the NHS to treat wet AMD, but until they have been appraised by health watchdog NICE (National Institute for Health and Clinical Excellence), PCTs are formulating their own policies for treating patients. Yet we know PCTs across England and Wales are denying treatment to thousands of patients who are forced to either find the money to pay for the drugs privately, or go blind.
“Oxfordshire PCT is a particularly bad example, but they are far from the only PCT choosing to save money rather than people’s sight. Oxfordshire is the first trust we are supporting legal action against, but we will be looking at every PCT’s performance and will not hesitate to support further legal action against each and every PCT in the country if we believe they are acting illegally.”
NICE recently announced preliminary guidelines, which could deny all but one in five patients in England and Wales treatment, and only then after the patient has gone blind in one eye. Final guidance from NICE is expected in September.
AMD treatments campaign
— 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
— 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).
Royal National Institute of Blind People
View drug information on Herceptin; Lucentis; Macugen.