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Thousands of people face severe loss of sight after a decision by the health watchdog to deny two leading treatments to NHS patients.
The drugs Lucentis and Macugen have been shown to be the most effective means of halting the onset of wet age-related macular degeneration (AMD), the only treatable form of the most common cause of blindness in Britain.
The condition affects about 250,000 people and claims 26,000 new sufferers each year. It damages the central part of the retina called the macula and leaves one in ten sufferers blind.
The National Institute for Health and Clinical Excellence has been under intense pressure to approve the drugs. Its draft guidance recommends that Macugen should not be used at all on the NHS in England and Wales, while Lucentis is recommended only for a small group of patients who have already gone blind in one eye and whose disease is progressing in their second.
The guidance is open to consultation but is based on NICE’s appraisal of cost-effectiveness, which is rarely overturned.
Campaigners said that the decision was “cruel” and “appalling” and added that they hoped the watchdog would reconsider its position for a final ruling, which is expected in September.
Patients in Scotland can already get both drugs after rulings by the Scottish Medicines Consortium, although there is concern that this will be overturned in light of NICE’s decision.
Thousands of patients who need urgent treatment to save their sight say that they have already been let down by local health authorities refusing to fund the drugs, known as antiVEGF treatments, on the ground of cost.
Lucentis, the most effective, can cost up to £28,000 for a course of 14 monthly injections, while Macugen costs £4,000 a year.
A study, published in the New England Journal of Medicine and reported by The Times in October, found that Lucentis can prevent vision loss and even improve sight in nine out of ten patients.
The total cost to the NHS of treating all newly diagnosed patients with the drug would be about £400 million, experts say.
Andrew Dillon, chief executive of NICE, said: “When treatments are very expensive we have to use them where they give most benefit to patients.
“Most people with AMD only seek help once the disease is beginning to affect their second eye.
“Because of this, and based on the evidence they have seen, our independent advisory committee believes the right thing to do is to treat and try to save as much sight as possible in the better-seeing eye.”
The Royal National Institute of Blind People (RNIB) said that it was “outraged” by the guidance, which meant that patients would be treated only once they had irrevocable loss of vision.
Steve Winyard, head of campaigns, said: “This preliminary guidance is worse than we ever imagined it could be. It is simply unacceptable that NICE is recommending that only a small minority of patients within England and Wales will benefit from these ground-breaking treatments.”
The Macular Disease Society, along with the RNIB, will be submitting a response to NICE “to encourage a reanalysis”.
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