Multiple Sclerosis is a disease that affects around 85,000 people in Britain. The way it affects people varies. 20 per cent of people with it experience only mild symptoms whilst at the other extreme it can oblige people to use a wheelchair, lose their powers of speech, become incontinent, experience chronic fatigue and have difficulty with sexual relationships.
Until recently the only treatments available for MS were those like steroids which could be used to treat the symptoms.
In 1995, Beta Interferon, a drug which has been linked to cancer treatment, obtained a licence for use in the relapsing remitting type of MS. Described by one neurologist as “rocket science” the formulation of Beta Interferon of use to people with MS is currently prepared by three drug companies. Costly bio-technology and the synthesis of mammalian cells is used to manufacture the drug and a course of treatment for one person costs around £10,000 per year.
For the health service, Beta Interferon is a new drug that represents a problem. It is expensive, its efficacy is disputed, it is the first treatment available of this type and a high demand is anticipated.
Mike Bullivant talked to MS sufferer Alex Fraser and her mother Pauline to hear her first hand experiences.
Alex Fraser has been using Beta Interferon since early 1999. She has the relapsing remitting type of MS, like approximately 20 per cent of MS sufferers in Britain. A relapse may require her to undergo a stay in hospital whereas when MS is in remission she can live normally at home and feel much better.
Alex was considered a suitable candidate for the drug by her neurologist Dr Sharief. He hopes that the new drug treatment will reduce the number of relapses and help Alex maintain her independence.
It takes time to see what effects Beta Interferon has on an individual but so far Alex has noted that her speech has improved, she is less likely to catch colds and her immune system in general has improved. Pauline, Alex’s mother only sees her at intervals and has noticed that her daughter is generally much more alert since she started on the treatment.
If money were no object, Mohammad Sharief, consultant neurologist at St Thomas’ Hospital, would like to prescribe a course of Beta Interferon to the hundred or so patients with relapsing remitting MS whom he sees. However, at present, apart from a group who are receiving the treatment as part of a drug company trial, only five people get it on the NHS.
He recognises that Health Authorities are subject to funding demands from many quarters, and, because the results from Beta Interferon treatments are not uniform and take time to assess, this may colour the funding decisions that have to be made.
The money comes from local health authority budgets and often has to come out of the same pot which has been allocated for a whole range of Neurology related spending. On top of this, health authorities across the country have adopted different attitudes to spending on Beta Interferon. Given the debate over its efficacy, some have provided none or very little funding where others have been prepared to spend more.
This has led to the frustrating situation for people with MS of the so called "post code lottery" – whether you might get Beta Interferon depends on where you live.
Earlier this year a further licence was issued to Beta Interferon allowing its use in another more serious category of Multiple Sclerosis called Secondary Progressive. Approximately 40 per cent of all people with the disease fall into this group and it is characterised by gradually accumulating disability. About 50% of the people who have Relapsing Remitting MS go on to develop the secondary phase of the disease.
It is generally agreed that the only way that a greater number of people with MS can be prescribed Beta Interferon is for the government to come up with new, specifically earmarked money.
This article was originally published in 1999; In 2002 the the National Institute for Health and Clinical Excellence (NICE) issued guidance that a recommendation to use Beta Interferon in the treatment of MS for new patients could not be justified, taking both benefits and costs into account.