MS patients 'denied drug'

Debbie Bealy has had one MS relapse since taking the drug

A drug that can help some sufferers of multiple sclerosis may be banned on the NHS, the BBC has learned.

According to confidential information obtained by the BBC, the goverment's National Institute for Clinical Excellence (NICE) has drawn the preliminary conclusion that there is not enough evidence at the moment to support the general use of beta interferon.

The drug is expensive - about £10,000 per patient per year - and NICE is believed to have concluded that money would be better spent on other forms of treatment for MS sufferers.

However, NICE has said no final decision has been taken and said any claims were speculation.

These medicines should not be made available in the NHS at the present time - their modest clinical benefit appears to be outweighed by their very high cost

National Institute for Clinical Excellence

Some MS patients say beta interferon reduces the number and severity of attacks, or relapses, they suffer.

But NICE believes more research is needed and that some of the claimed benefits are the results of a placebo effect.

Divided opinion

The institute suggests any extra NHS funds would be better spent on physiotherapy and other rehabilitation services.

It also proposes new guidance to improve standards of care across the NHS as it has found wide variations in the way the disease is treated.

There are going to be tens of thousands of people waking up this morning with the icy fingers of dread closing round their hearts

Peter Cardy, Multiple Sclerosis Society

If the decision is accepted up to 8,000 more who might be eligible for the drug will have to pay for it themselves. Those currently receiving it would not be affected.

Peter Cardy, chief executive of the Multiple Sclerosis Society, said: "I can only say that there are going to be tens of thousands of people waking up this morning with the icy fingers of dread closing round their hearts.

"Sir Michael Rawlins' institute has taken away from them the only hope they have ever had of relief from this disease."

However, Sir Michael Rawlins, who is chairman of NICE, said the institute had only just started its review of beta interferon.

Interferon beta

Two drugs contain Interferon beta - Betaferon and Rebif

A year's treatment costs £10,000

The strongest study results suggests it can help people with relapsing-remitting MS - less than half of all MS patients in the UK

There is also some evidence it can slow the progress of secondary progressive MS

It does not have any effect in some patients

In the rest, by reducing the number of relapses, more severe disability can be delayed - but not prevented

"The institute's appraisal committee has just taken its first look at the available evidence. It is a long way from making its final decision.

"Interested parties will even then have an opportunity to appeal against its advice."

Neurologists are divided on the benefits of beta interferon.

Consultant Neurologist Dr Peter Rothwell told the BBC that results of trials had been disappointing.

But patients using the drug say it works. Debbie Bealy said her quality of life has improved.

Dr Peter Rothwell say NHS money should not be spent on the drug

"The first thing I noticed was that I had more energy and didn't feel so fatigued," she told the BBC. "Looking after the children became easier and fulfilling my role as a nurse became easier."

Dr Mohammad Sharief said the drug offered hope to patients.

"MS is incurable," he said. "We don't have a drug that could stop the disease, however beta interferon could stop the number of relapses and the severity of them."

Phil Gray, chief executive of the Chartered Society of Physiotherapy, said physiotherapy was not an alternative to beta interferon, but a part of an overall package of care.

'This shouldn't be seen as an either/or situation. Multiple sclerosis patients deserve the full package.'

Shadow health secretary Liam Fox said the Government had distorted the workings of NICE by "slipping in affordability" as one of the criteria it considered.

He said: "This moved NICE away from considering simply cost effectiveness and clinical effectiveness of treatments and created an arms-length rationing mechanism for ministers.

"NICE is not equipped to undertake this completely inappropriate role. The next Conservative government will therefore remove the affordability criterion on return to office."

Speaking in the House of Commons, prime minister Tony Blair said: "Of course it is the case that it is important to see how much money the health service can spend.

"But we are the people that are giving the health service the biggest increase it has ever had."

NICE is due to publish its final decision in August after taking representations from interested parties such as patients' groups.

NICE was set up last year to end variations in treatment across the NHS.