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Friday, 19 January, 2001, 12:17 GMT
Motor neurone disease drug approved
MND causes severe disability
A drug treatment for the disabling and deadly condition motor neurone disease should be made available on the NHS, a standards body has decided.

The National Institute for Clinical Excellence (Nice) has given approval for the drug, Riluzole (Rilutek) to given to patients with the most common form of the disease - amyotrophic lateral sclerosis.

The extra time gained by taking riluzole can mean so much to people with so little time left

George Levvy, Motor Neurone Disease Association
Many health authorities had previously refused to pay for the drug, which costs around 280 a month.

But Nice has decided that the drug does provide value for money. The ruling could cost the NHS around 7.5m a year.

There is no cure for motor neurone disease, but Rilutek can slow progress of the condition.

Andrew Dillon, Nice chief executive said: "The additional months of life which this medicine offers to people with the ALS form of MND makes it an important and worthwhile treatment.

"It is both a clinically and cost effective intervention when used in accordance with its licensed indications and the Institute is very pleased to be able to recommend its use."

Motor neurone disease (MND) is a collective term for a group of diseases that affect the cells in the brain and spinal cord that control movement.

MND causes the muscles to deteriorate so that sufferers gradually lose their ability to move.

On average, the life expectancy after diagnosis is approximately three years.

Up to 5,000 people in the UK have MND. It usually develops after 40, and most people are aged between 50 and 70.

Good news

Professor Nigel Leigh, director of the MND Care and Research Centre at King's College Hospital, said: "This is good news for people with MND.

"This guidance means that all suitable individuals with MND (ALS) should now be treated with riluzole.

"The inequities of postcode prescribing of riluzole should now cease.

"We know that delays have occurred in health authorities funding of Nice guidance on other treatments, but everyone connected with the treatment of MND is concerned that does not happen here.

"It is likely that treating with Rilutek as soon as possible will delay the progression of this terrible disease. I hope that funds will be available immediately."

George Levvy, chief executive of the Motor Neurone Disease Association, described the NICE decision as a "significant endorsement of the only drug treatment available to people with MND".

He said: "The extra time gained by taking riluzole can mean so much to people with so little time left."

Research conducted by the MND Association showed that that the majority of people with motor neurone disease wanted riluzole made available on the NHS.

The major benefit of Rilutek is that it enables individuals to remain longer in the earlier stages of the disease when symptoms are least severe.

NICE's decisions are not legally binding, but health authorities have to explain themselves if they flout the rulings.

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19 Jan 01 | Health
'Drug has prolonged my life'
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