Nice is just not nice !

All patients in England suffering from a disease which causes blindness are to get access to a sight-saving drug.

Lucentis treats wet age-related macular degeneration, the leading cause of sight loss in the country.

The drug is already available in Scotland, while Wales and Northern Ireland have said they will fund it.

The National Institute for Health and Clinical Excellence (NICE) had originally said patients should wait until they went blind in one eye.

Wait till they went blind in one eye ???

Wet age-related macular degeneration
For the Attention of Andrew Dillon, Chief Executive.

It is understood you have a ruling that Patients "...must first go blind in one eye and only then can they be treated when sight starts to fail in their second eye."

Please consider reversing this ruling.

I am reliably informed Lucentis and Macugen are freely available in Scotland, and that people in the USA, Australia, France, Germany and Italy, all enjoy the benefits of early ARMD care.

Thank you for your email concerning the Institute’s draft guidance on the use of Lucentis and Macugen for treating age related macular degeneration. I know that these proposals have disappointed many people living with this distressing condition, as well as those who care for and who treat them. Our independent advisory committee used the results of clinical studies carried on these drugs to guide them in
making their recommendations. It’s these studies that were used to obtain the licenses which allow the drugs to be used in the first place and which enable us to compare them with other treatments. Our job is find out whether Lucentis and Macugen are any better than current treatments, and if they are, whether the cost to the NHS is reasonable, given all the other treatments which have to be provided to everyone else. When treatments are very expensive, we have to use them where they give most benefit to patients.
What you say does matter. Because we have had so many similar comments from individuals we will be bringing them together and summarising them before they are put to our independent advisory committee. Whether or not the final guidance is different from the draft recommendations, the members of the committee will be fully aware of what you and others think about this important decision.
The closing date for the consultation on this draft guidance has now passed but please be assured that your comments will be passed on as they were received before the deadline.

The final guidance is expected to be issued in November 2007.
Yours sincerely,
Andrew Dillon, Chief Executive

Our job is find out whether Lucentis and Macugen are any better than current treatments -

The National Institute for Clinical Excellence (NICE), the body that decides which drugs should be available on the National Health Service, has been accused of spending more on 'spin doctors' than on evaluating new drugs.

The Conservatives claim that NICE spent 13 per cent of its budget, or £4.4million, on its communications team in 2007/08.

A cancer sufferer with just a couple of months to live has won his High Court battle to get a life-prolonging drug on the NHS.

Colin Ross, 55, mounted a desperate 'end of the road' legal challenge against an NHS trust's refusal to fund treatment.

Judge Simon Grenfell overturned West Sussex Primary Care Trust's decision that the new drug Revlimid was not cost-effective, and the case should not be treated as 'exceptional'.

The judge ruled the trust's decision was unlawful and 'one which no reasonable authority could have made on the application before it.'
He said: 'It follows that the decision must be quashed'