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Tuesday, 7 August, 2001, 21:01 GMT 22:01 UK
Concern as MS drug 'rationed'
Wheelchair bound
The drug can help some MS patients
Multiple sclerosis sufferers have expressed concern after the government's drugs watchdog said NHS patients should no longer be given two controversial drugs.

The National Institute for Clinical Excellence (NICE) has recommended that the NHS in England and Wales should no longer pay for either beta interferon or glatiramer acetate.

It said neither could be recommended "on the balance of their clinical and cost effectiveness".

This means patients could be denied the drugs within months.

Peter Cardy, chief executive of the Multiple Sclerosis Society, said NICE's attitude was "appalling".

This decision is politically motivated rationing dressed up as a clinical evaluation

Paul Burstow, Liberal Democrats

"What in effect this is saying is that people with MS are not worth treating," he said.

"It's simply barring treatment for this peculiarly horrible condition."

Paul Burstow MP, Liberal Democrat spokesman for older people, said: "This decision is politically motivated rationing dressed up as a clinical evaluation.

"Beta interferon is being prescribed to MS patients throughout Europe, yet it seems it is too expensive for the NHS."

A spokesman for US pharmaceutical company Biogen Inc, which makes one of the beta interferons, said new evidence had been found of the drug's effectiveness since NICE's trials.

"Approval of these drugs would allow British patients to enjoy the benefits enjoyed by MS patients throughout the rest of the developed world," he said.

'Postcode lottery'

About 2,000 MS patients in the UK are currently taking beta interferon, but the MS Society believes some 10,000 of the estimated 85,000 MS sufferers in the UK could benefit.

The society says the 2% to 3% of MS patients in this country which receive the drug compares poorly with the 12% to 15% in other EU countries.

Studies suggest it could slow the progression of the disabling disease and improve quality of life.

But the drug is very expensive, is only suitable for a small proportion of MS patients, and can have severe side-effects.

Some doctors say this means the money spent on beta interferon would be better employed elsewhere in MS care.

The controversy has led to a "postcode lottery" - currently patients in some areas can get it, while others cannot.

NICE now recommends that only those patients already receiving the drugs should be allowed to continue, and then only until their doctors believe they are ready to have them withdrawn.

Final decision

The proposal was issued for consultation and not as official guidance. A final decision will be made after 7 September and made public in November.

Scotland has its own version of Nice, the Health Technology Board for Scotland, which will reach its own verdict on the drugs.

Beta interferon has proved the biggest headache for NICE, formed in 1999 to combat so-called "postcode prescribing".

The body has come under fire from campaigners for the amount of time it has taken to develop and drive through its guidance.

The BBC's Karen Allen
"There is a limited amount of money in the NHS pot"
Stephen Kerr, Beta interferon patient
"We aim to pay for it as long as possible"
Professor David Barnett, NICE's appraisal committee
"There's considerable misunderstanding about these drugs"
See also:

06 Aug 01 | Health
'Beta interferon is my last hope'
25 Jan 00 | Health
MS drug 'not worth the money'
30 Nov 98 | Medical notes
Multiple sclerosis
24 Jun 00 | Health
MS patients denied talks
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