Charity to fund sight-drug fight

A charity is financing an 84-year-old man's legal fight for NHS funding for a potentially sight-saving drug. The Royal National Institute of Blind People said Dennis Devier had an "exceptional" case for the drugs for wet age-related macular degeneration. Mr Devier, from Henley, who is the main carer for his disabled wife, is taking his case against Oxfordshire Primary Care Trust to the High Court. Oxfordshire PCT said the issues raised by the case were "under consideration".

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." Mr Devier suffers from wet age-related macular degeneration (AMD), which can be treated with drugs known as anti-VEGF.

England and Wales primary care trusts are formulating their own policies on the drugs, while awaiting final guidance from the National Institute for Health and Clinical Excellence (NICE). Mr Devier, a former RAF flight engineer, is already blind in one eye and has spent more than £8,000 of his savings on private treatment. He says that if he loses his sight completely he will be unable to care for his wife Frances, who is in her 80s and can barely walk.

NICE draft guidance last month recommended a total block on one drug, Macugen, and tight restrictions on a second, Lucentis, sparking outrage among campaigners.

Mr Winyard said: "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." The charity claims 70 people within the trust's care need the drugs. "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," Mr Winyard said. "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."

An Oxfordshire PCT statement said: "Oxfordshire PCT has received a letter from the solicitor acting on behalf of Mr Devier and the issues raised in the letter are currently under consideration."

NICE's preliminary ruling said Lucentis should be given only to people who have a specific type of the wet form of AMD - these make up about 20% of the total. Even then it was recommended for patients with the condition in both eyes - and for use in the least-diseased eye only.

Wet AMD is the leading cause of sight loss in the UK, affecting about 250,000 people. There are 26,000 new cases each year.

Mr Winyard has accused NICE of ignoring "the overwhelming body of evidence that these new treatments are cost-effective and have the potential to halve the number of people going blind each year".

NICE chief executive Andrew Dillon said: "When treatments are very expensive, we have to use them where they give most benefit to patients."

Macugen costs about £10,000 a year, and Lucentis about £12,000. Both drugs have been made widely available in Scotland. The RNIB is a member of the AMD Alliance, which receives money from some manufacturers of wet AMD drugs. The charity said it received less than 1% of its funding that way and that it was financing the legal action from its own funds.