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Ouch Q&A #11: NICE decision on sight-saving drugs

by Emma Bowler

22nd June 2007

Q: What's all this I hear about a NICE decision which would cause thousands to go blind? Doesn't sound that nice to me.
A: First of all, NICE stands for National Institute for Health and Clinical Excellence - they are the people who, amongst other things, assess the worth of new drugs to see if they should be available on the NHS in England and Wales. They have caused controversy recently by not allowing Herceptin as an NHS listed drug, and have now hit the headlines because they have turned down a much-anticipated drug that could halt early onset blindness for people with Wet AMD (age-related Macular degeneration).
Close-up of an eye
Q: What is this Wet AMD? It sounds like some sort of 80's pop group.

A: According to the Royal National Institute of the Blind (RNIB), Wet AMD is the leading cause of sight loss in the UK and can lead to blindness in as little as three months. It is caused by the growth of new blood vessels under the centre of the retina, which can leak fluid and cause scar tissue to form, destroying the central area of vision. Prompt treatment is needed to minimise the risk of permanent blindness.

Q: I've never heard of it. Are we just talking about four people and a cat having this condition?

A: No. 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 it.

Q: So, what's the deal with NICE then?

A: They have caused uproar in the AMD community - a group who are very vocal and motivated when it comes to seeking a cure. Having assessed two potential drugs, they've dismissed the use of one, Macugen, entirely; and they recommend that the other, Lucentis, is only used when both eyes are affected, with the treatment being given in the better seeing eye. This means that 80% of patients with Wet AMD will not receive treatment; the other 'lucky' 20% will be offered treatment only after having gone blind in one eye.

Q: It's not looking good for them then, is it?

A: As Tom Bremridge, Chief Executive of the Macular Disease Society, observes: "Limiting the treatment options to 20% of patients who would benefit is unjustifiable, and allowing one eye to go blind before treating the second eye is cruel and totally unacceptable".

Q: I hear that the situation isn't the same for folk north of the border, though?

A: Indeed. NICE only has responsibility for guidance on health technology and clinical practice in England and Wales. In Scotland, that role is carried out by the Scottish Medicines Consortium. Lucentis has just received the go-ahead from them, while Macugen was approved back in 2006.
A damaged retina
Q: If the Scots can have the treatment, why can't those people who live south of the border?

A: Well, it's quite a dent in the NHS drugs budget for England and Wales. A two-year course of Lucentis costs up to £18,300, while for Macugen a two-year course comes in at £9,300.

Q: You can see why NICE are only wanting to spend money on a smaller number of worthy cases then.

A: Yes. But the RNIB's Head of Campaigns, Steve Winyard, argues that this is a false economy. He says: "It is much more expensive to support someone once they have lost their sight than to provide sight-saving treatment".

Q: So if I get Wet AMD, my only hope is to don a kilt and move to Scotland?

A: No need to start working haggis into your diet just yet. The NICE recommendations are now up for consultation. Andrew Dillon, Chief Executive of NICE says, "We're very keen to hear from people with AMD and those who care for them, and as always, our committee will take these views into account when making their final recommendations". The consultation closes on 5 July 2007, with the final guidance expected in September 2007. So if you want to have your say, submit your comments via the NICE website.

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