Dithering over NHS drugs could leave 10,000 blind

12 April 2012

At least 10,000 people could go blind while the Government's drug rationing watchdog ponders its controversial decision to restrict two sight-saving drugs.

The National Institute for Clinical Excellence yesterday announced a review of its ruling to limit the availability of Macugen and Lucentis.

Up to 13,000 patients, campaigners and doctors had protested at the ruling, claiming thousands would lose their sight as a result.

But the review announced by NICE yesterday will take another six months - in which time at least 10,000 people could lose their sight, according to campaigners.

The Royal National Institute of Blind People has branded the situation was a 'complete shambles'.

"By going back to the drawing board to issue a second set of draft guidelines, NICE are in effect admitting they got their preliminary recommendations badly wrong," said spokesman Steve Winyard.

"This incompetence means that every day they reconsider and delay, 50 people could lose their sight."

The drugs at the centre of the row help treat patients suffering wet age-related macular degeneration, or AMD, the leading cause of blindness.

There are around 26,000 new cases of wet AMD each year in Britain.

The condition can lead to sight loss in as little as three months and needs prompt treatment if sight is to be saved.

In June, NICE rejected the use of Macugen on the NHS in England and Wales. Lucentis, meanwhile, could be used only if both eyes were affected and when the patient had gone almost blind in one.

In addition, the draft guidance recommended that Lucentis was restricted to those with a particular type of wet AMD - affecting only about one in five patients.

Campaigners said the NICE guidance would have meant an estimated 20,000 patients a year went blind - yet the drugs have been approved for NHS use in Scotland.

Before the June ruling, patients were assessed on a case-by-case basis with most told by their local health trust that they were waiting for the NICE guidance.

As a result of the decision, trusts will simply revert to the status quo of denying the drugs to the majority of patients.

Lucentis costs up to £28,000 for a full course of treatment, which involves 14 injections over two years, while Macugen costs £36,000 for a course of 20 injections.

NICE said the Department of Health had made clear that local trusts should not use the lack of NICE guidance as an "excuse not to prescribe a treatment".

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