Patients ailing beyond help while NHS bill for treatment is assessed, says Multiple Sclerosis Society
Sarah Boseley, health
Monday April 30, 2001
Hundreds of people with multiple sclerosis are deteriorating past the point where they can be helped by beta interferon, the only drug neurologists believe can stall the disease, while a government institute drags its feet on whether the NHS can afford to pay for it, a patients' support group claimed yesterday.
MS patients have been waiting since August 1999 for a decision. "The whole way this has been handled has been dishonourable, disgraceful and disgusting," said Peter Cardy, chairman of the MS Society.
The national institute for clinical excellence (Nice) was established by the government to stamp out the "postcode lottery" in the NHS whereby one health authority will pay for a certain drug or treatment but another will not. Its remit is to appraise new drugs, treatments and guidelines, and to advise ministers on what the NHS could and should afford.
A significant number of new drugs have been appraised since Nice was set up in April 1999, including Relenza for flu, and various expensive cancer drugs. Drugs for motor neurone disease and Alzheimer's, both degenerative disorders like MS, have been approved even though, like beta interferon, they are said to give only marginal benefits.
Most appraisals take about a year, but MS sufferers have been waiting for a decision on the newer drug, glatiramer acetate (whose brand name is Capaxone), also for more than 20 months.
Part of the delay was caused by the appeal - by MS patient groups, neurologists, the Royal College of Nursing and drug manufacturers - against Nice's original decision to ban the drugs from the health service. The appeal was upheld and the appraisal committee looked again at the drugs.
A decision was expected last December, but Nice then decided to commission research into the cost to the health service. It has now said the decision will be made in July.
People with MS have been picketing Nice board meetings in protest at the delay, which Mr Cardy believes is unforgivable. "It has allowed hundreds of people to cease to be eligible for treatment, even if it finally recommends treatment."
Beta interferons have to be prescribed while the patient is still active. David Lloyd is a perfect candidate, but is 21st on his local drugs waiting list; like many health authorities East Lancashire capped the amount it was willing to spend on beta interferon, which costs about £10,000 per patient per year.
Dr Lloyd, who is 35, used to work for the authority and understands the predicament. "They must stay within budget. My beef isn't with the health authority, it's with the national institute taking so long." MS hit him suddenly around Christmas 1999.
"I had trouble asking for a 30ml syringe, then my hands started to go numb. Then it progressed. By the time they diagnosed it, it had affected most of my body - I couldn't put a drip in properly."
He worked at getting very fit, but the relapses set him back. "It's like someone has taken out the good battery and left you a half spent one," he said.
His neurologist believes he needs to have beta interferon soon. He is taking mitozantone, part of a cocktail of drugs used in leukaemia treatment that is quite toxic. But no one can take this for more than two years because it damages the heart. Dr Lloyd takes it every three months; it makes him vomit for several days before it works.
Mr Cardy believes that Nice is not taking fully into account the devastating nature of the disease, which in the worst cases can leave people totally disabled and others unaware of what is going on.
For Nice, the exercise is the hardest it has had to undertake. Beta interferon is considered to have only a modest benefit in slowing down the disease's progress, a fact that the institute must set against the cost to the NHS of a drug that many people could be on for years. The institute says it is trying to be fair to everyone and is participating in an economic modelling exercise.
Mr Cardy claims Nice is dragging its heels over cost alone. "Sir Michael Rawlins [chairman of Nice] has said it is the price that's too high. He has made it clear that he believes the MS societies should be lobbying companies to lower the price to about £3,000."
But the drug is widely
available abroad. Dr Lloyd, for one, thinks that if the decision is an
economic one, the government, and not the institute, should be making it.
© Guardian Newspapers Limited 2001