Sarah Boseley, Health Correspondent
Thursday March 9, 2000
More than a thousand multiple sclerosis sufferers and their families lobbied Downing Street and the houses of parliament yesterday to publicise their fear that beta interferon, the only drug available to treat the disease, may be banned from NHS prescription because of its cost.
Beta interferon is among several drugs that have given rise to the phrase "postcode lottery". Health authorities in some areas will pay for it, while others will not.
Studies have shown that it does have a beneficial effect on MS, but there is controversy over the amount of relief sufferers get in relation to the high cost of its prescription.
The government set up the national institute for clinical excellence with the aim of putting an end to the postcode lottery. Nice is charged with assessing the effectiveness of drugs and treatments, comparing them with what else exists and recommending the best deal to the government.
Since Nice was set up last April, it has evaluated only the flu drug Relenza, which it ruled was not cost effective - with the result that few GPs prescribed it this winter.
Nice will shortly evaluate beta interferon and the MS Society fears that it may suffer the same fate.
"The signals we have had from ministers are that they have not only asked the question, but already determined the answer," said Peter Cardy, chief executive of the society. "Nice is a body whose agenda is written by the government. We think the ministers have primed Nice to say this is a drug that should not be used."
From the prime minister during a recent edition of the BBC Newsnight programme, to health ministers John Denham and John Hutton, the government had been casting doubt on the efficacy of beta interferon, said Mr Cardy.
The society yesterday ran a full page advertisement in national newspapers depicting Tony Blair as a stained glass window messiah, with the line: "And lo, he came amongst those stricken with MS and said unto them: 'Sorry, can't treat all of you - bit of a financial shortfall'."
Only 3% of MS sufferers in the UK receive interferon, compared with 20% in Germany and up to 40% in the US.
Giles Elrington, a consultant neurologist in Colchester, said the fixed budget for interferon in the North Essex health authority meant he could no longer prescribe the drug on the NHS to his patients.
"I think interferon has a substantial effect," he said. Studies have looked at the effects of the drug on sufferers who have taken it for up to three years.
"In that time we can show that the frequency of relapses is diminished by a third, the severity is diminished and the effect on the brain scan is miles better."
Benefits: more energy and an end to severe relapses
Denise Newton had to retire from her job as a sociology lecturer at Birmingham university at 50 because of multiple sclerosis. If she had been given beta interferon earlier, she feels she could have carried on.
She was one of the first patients in the country to receive the drug after it was licensed and she has been on it for two and a half years.
"I have got more energy. I can walk a little further," she said."I had been having very, very severe relapses every six months. I haven't had one since I went on it. The improvement has been tremendous."
She fears that Nice may rule that beta interferon is not cost effective and that the improvements in quality of life it offers some people do not justify its expense.
If that happens, she fears it could be taken away from her. "It is very distressing because I know what beta interferon has done for me."
Waiting lists: budget caps prevent doctors prescribing Stuart Cole, 30, has been on Birmingham health authority's waiting list for beta interferon for two years. His consultant believes he ought to have the drug, but the health authority has capped its interferon budget and until someone moves away or stops taking it, Stuart has to do without.
He has had only one attack of MS, but it lasted a year and it left him with disabilities.
"I have been told its so expensive they can't afford to put everybody on it so they only give it to people after they have had a major attack. To me that is closing the stable door after the horse has bolted," he said.
Mr Cole has recently started working again as a payroll clerk in Solihull.
He cannot be sure that interferon would prevent another relapse, but studies
have shown that relapses in the form of MS he has are cut by a third in
those taking the drug.