Anger as sufferers face 'the most shocking injustice' The future of the NHS: special report
Sarah Boseley, health correspondent
Wednesday June 21, 2000
Beta interferon, the only drug that multiple sclerosis sufferers say gives them any relief from the debilitating progression of their disease, will not be sanctioned for prescription on the NHS by the government's advisory body, it is understood.
The preliminary decision by the National Institute for Clinical Excellence is likely to anger people with MS.
Peter Cardy, chief executive of the MS Society, said last night: "I think it would be the most shocking injustice - a wicked and dreadful indictment of what kind of society we have come to. There is no alternative for people with MS. There is nothing else that is going to prevent relapses. It would be a ghastly state of affairs if it were not permitted."
There were suggestions last night that patients already taking beta interferon - a very expensive medicine for which only certain health authorities agree to pay - will be allowed to continue with it on the NHS, while new patients are turned away. "How would that serve the notion of ending the postcode lottery?" asked Mr Cardy.
Stamping out "postcode prescribing" - the availability of expensive new drugs in areas where health authorities are willing to pay but not others - was one of the stated aims of ministers in setting up NICE over a year ago. Recent favourable decisions on drugs for ovarian and breast cancer have been universally applauded, but the beta interferon verdict will go down badly.
The MS Society, which put in evidence to NICE concerning the benefits to patients, intends to appeal, if the preliminary decision - leaked last night - becomes the final verdict.
Mr Cardy says the body has not stood by its undertaking to listen to the voice of the patient. "On the grounds of the process alone, NICE have disregarded their own rhetoric about inclusion of patient opinion," he said. At no point in the process of appraisal, which has been going on for months, were people with MS given an opportunity to air their views.
He believes a public outcry is inevitable if beta interferon is to be denied to people with MS. A recent lobby of Parliament for greater access to the drug attracted 1,200 people. "What I think is difficult to forecast is what the reaction of people with MS will be," he said. If there were 1,200 people wanting to lobby Parliament, we will have a great many more wanting to make their feelings clear to Mr Blair and Mr Milburn (the health secretary)." Scientific opinion on the benefits of the drug is mixed, however. While patients feel better, the evidence of the trials is not conclusive.
The news of the preliminary determination of NICE's appraisal committee, which has to assess the effectiveness of medicines by comparison with other treatments and - crucially - their cost effectiveness within the NHS, leaked out on the BBC news last night.
NICE is already spending taxpayers' money on a comprehensive leak inquiry into an earlier decision. It is likely that this latest leak will be added to the brief of the management consultants called in to carry it out. It is anticipated that the inquiry will conclude that keeping preliminary decisions secret is impossible because of the wide range of people who have to be told.
NICE has a policy of informing all those - including government, patient
groups and drug manufacturers of its early decision, so that they can give
their views. Yesterday's leak will reinforce the opinion of many that this
system is unworkable, and that the preliminary decision must be made public,
regardless of any potential damage to a drug's share price.