Thousands of patients with multiple sclerosis are to be given expensive drug treatments on a payment by results scheme being thrashed out by the government and manufacturers.
The official body monitoring the cost effectiveness of medicines does not believe they are worth the money which the NHS would have to pay under normal arrangements. But pressure from sufferers of the disease has forced the Department of Health and four companies making beta interferon and related products to consider an unusual solution.
Under the "risk sharing" plan, the NHS would pay for the drugs to be used for patients with the relapsing-remitting form of MS, in which spells of the disabling nervous system disease are separated by periods of recovery. After an agreed time span, assessments would be made as to whether the drugs were working by reducing inflammation of the nervous tissue. If they were, payments would continue unchanged. If they were not, payments would be reduced on a sliding scale.
The national institute for clinical excellence, the advisory body on clinical and cost-effectiveness of drugs in England and Wales, was not ready to recommend the drugs' use, although 2,000 people in the UK are said to be using them.
The Multiple Sclerosis Society believes as many as 10,000 would benefit. The chief executive, Peter Cardy, said: "We need to see prescription start as quickly as possible. While Nice has muddled its way through more than two years of appraisal, hundreds of people have become too disabled to qualify for the drugs. By contrast, the department has acted decisively. It must make sure no more endure the cruelty of missing out."
The drugs cost up to over £12,000 a year per patient. Nice has been under fire since it was set up by Labour in its first term partly to put an end to postcode prescribing under which some health authorities were ready to pay for certain treatments and others were not. Some critics see it as simply a drug rationing body while others have accused it of being too easily rolled over by drug companies.
In August Nice suggested the companies and the government conducted their own negotiations over the MS drugs to see if they could be secured "in a manner which could be considered cost effective".
The beta interferon drugs are seen as causing particular difficulties for Nice and the government since most of the body's work examines new drugs and procedures. But refusal to endorse MS treatments could leave them open to the charge of the historical equivalent of postcode prescribing, by which patients were treated according to the year or month they fell ill.
Nevertheless, ministers will be keen to ensure they do not set a precedent by which patients or companies can effectively bypass Nice decisions.
The health department said other options were also being considered. "While discussions are under way, we have yet to reach an agreement." Peter Longthorne, medical director of Schering Healthcare, one of the companies involved, said: "A positive solution is still at a conceptual stage and the details have to be worked out. However it is good news that the department is working on a way forward to end the currently unacceptable situation of inequity in the availability of beta interferon."
· The campaign to clean up filthy hospitals is working, Alan Milburn, the health secretary, said yesterday. Spot checks has found none so bad as to be graded "poor" because of their hygiene, litter or bed-linen compared with 253 last year, almost one in three.
