MS sufferers condemn NHS curb on drug treatment

Daily Telegraph, 22 June 2000

THOUSANDS of future multiple sclerosis sufferers face the prospect of being denied treatment on the National Health Service with a drug that is known to prevent relapses that can lead to paralysis or blindness.

A leaked report from a government advisory body has proposed that the money would be better spent on physiotherapy and rehabilitation than on beta interferon, which costs an estimated £10,000 a year per patient. There are 85,000 MS sufferers in Britain and representatives say up to 10,000 of them would benefit from the drug.

The report, however, claims that the effects of beta interferon are marginal. In the Commons yesterday, Tony Blair strongly defended the preliminary recommendation from the National Institute for Clinical Excellence (Nice), which advises on the use of medicines within the NHS. But he said: "Nobody who gets it now will be affected by this report."

Christine Jones, executive trustee of the MS Research Trust, said that the costs would be offset by MS sufferers having fewer relapses, which could cause disability and paralysis and involve more medical care. She said that between 12 and 16 per cent of the MS population elsewhere in Europe were taking the drug, while the figure for the UK was about two per cent.

She said: "It is quite common for people with MS to have a number of relapses, which can take you off your feet or lose your vision. It has been shown that using beta interferon can reduce the number and severity of relapses. This means that someone with four or five attacks per year could then only have one, making a major difference to their quality of life."

She also protested that MS sufferers had not been given the chance to give evidence to the National Institute. Debbie Beeley, who campaigned for a year to receive the drug from her local health authority, said the threat could cost thousands of sufferers the opportunity of leading independent lives.

Mrs Beeley, 36, a theatre nurse and mother of two from Rotherham, South Yorkshire, said that before she was given the drug she had five severe relapses in 12 months, with symptoms ranging from paralysis from the waist down to blindness in one eye. She said: "The drug completely changed my quality of life.

"I had not been able to work properly, I had not been able to read my children bedtime stories or help them get dressed. I was sure I would have to retire because I could not keep working. In the past nine months since I have been taking the drug, I have had only one minor relapse which lasted for four days.

"They are going on about expenses, but the drug keeps people out of hospital and it lets them maintain their independence - which is surely saving money. It seems like a very false economy. It poses the question, if it is not clinically or cost effective, why did they license it in the first place and why is it used by sufferers worldwide?"

Nice said it was disappointed that the appraisal document had been leaked. Confidentiality agreements were signed by organisations that were sent the preliminary report but have been criticised on the grounds that they were aimed at protecting the share price of pharmaceutical companies rather than allowing a full public debate.

Prof Sir Michael Rawlins, chairman of Nice, said a careful consideration of the evidence had shown that the medicine's "modest clinical benefit appears to be outweighed by the very high costs".

Nice, which recommended that the anti-flu drug Relenza should not be prescribed on the NHS after questioning its effectiveness, is expected to issue its final guidance on beta interferon in August after a second appraisal committee meeting and feedback from patient groups, professional groups and the manufacturer.

Dr Trevor Jones, director general of the Association of the British Pharmaceutical Industry, said that if the decision were implemented it would be "a heartless decision depriving patients of the only medicines that offer hope for improving their quality of life".

The MS Society, which has 45,000 members in the UK, also condemned the proposal. A spokesman said: "We have experienced, time and time again, people saying that this drug has helped them stay at work or they no longer have to spend months in hospital."

In the Commons, William Hague, the Conservative leader, said the proposed restriction on beta interferon would cause deep concern to thousands of families and urged ministers to set up an exceptional medicines fund to provide the cash for expensive treatments.

He accused the Government of attempting to "pass the buck" on decisions about prescribing expensive drugs to the National Institute and told ministers that the question of affordability should be their responsibility.