More MS news articles for January 2001

MS: The price of having a life

An effective new drug for MS has given Louise Buchanan back her independence, but now it could lose its funding.,,340-68329,00.html

Janet Fricker reports
Louise Buchanan is 30 and has multiple sclerosis (MS). Until 18 months ago she was housebound but, suddenly, after changing to a new drug, her independence was restored and she was able to work.

"I can pay my own way and donít rely on disability benefits. I can drive and socialise and feel as though Iím living a life," says Louise, an administrator for the charity AbilityNet. However, after a decision last month by the National Institute for Clinical Excellence (NICE), she fears that her freedom may be at risk.

NICE was expected to issue guidance this month on whether health authorities should fund beta interferon or glatiramer acetate (Copaxone) for MS. Glatiramer acetate is likely to cost about £6,650 per patient per year; beta interferon costs up to £10,000. But in December NICE said that it would not give its decision until July to allow time for further research.

Louise, from Liverpool, was first given glatiramer acetate in April 1999. But as the drug received its product licence in December, she is no longer eligible for free supplies from the drug company and will depend on her health authority agreeing to fund it. Before she took the drug she was afraid to leave her flat for fear of falling over. "I felt that it was only a matter of time before Iíd be forced to live in a nursing home," she says.

Dr Mike Boggild, a neurologist from the Walton Centre for Neurology and Neurosurgery in Liverpool, has five patients, including Louise, who have been receiving treatment with glatiramer acetate from Teva Pharmaceuticals, on a "named patient" basis, at no cost to the NHS.

He hoped that a positive decision from NICE would lead to his health authority agreeing to take over funding. "My patients are now in a position of uncertainty that the supplies of this drug may not be continued," says Boggild.

Louise was 22 and working in a bar when she first felt discomfort. "I was pulling a pint when I noticed a strange sensation in my right thumb," she remembers. The numbness travelled up her arm, then she felt as though she was getting flu and her sight deteriorated rapidly. MS was diagnosed two weeks later.

"I went into shock. The image I had was of a disabled person in a wheelchair."

For the next 18 months she had some numbness and pins and needles, but was able to study for a teaching qualification.

Like most people with MS, Louise started with the relapsing-remitting form of the disease, involving attacks followed by periods of remission. Then in 1995 she had a major relapse. First her feet went numb, and then the numbness travelled up her body until she felt deadened from head to toe. She had no fine sensation and could not distinguish between hot and cold.

"Over two weeks I went from feeling fine to needing a stick to walk and being unable to write," she says. "I needed two hands to hold a drink and had to hang on to furniture to get round the flat."

She was referred to Boggild, who offered her the chance to take beta interferon (betaferon), which was already licensed and funded by some health authorities. "Iíd been warned that there would be flu-like side-effects, but nothing prepared me for their severity," says Louise. "The first time I took the drug at home I felt I was dying. Sweat poured off me, I had a raging headache and I ached all over."

The side-effects became less extreme with time, but over a year Louise found that the drug had no beneficial effects. "I was aware that beta interferon costs a great deal of money and felt that it was daft continuing to take the drug if it wasnít doing me any good," she says.

So why do such drugs benefit some patients but not others? "There is increasing evidence that MS may not be one disease, but a group of closely related conditions producing similar symptoms," says Boggild. "Interferon may be more effective in some patients and glatiramer acetate in others, though we have no way at present of predicting who will respond to an individual treatment. For patients faced with the uncertainties this disease brings, all effective therapies have to be made available."

Louise started to take the drug in April 1999. Glatiramer acetate is a synthetic protein comprising four major amino acids (the break-down products of protein) found in the myelin sheath in the nerves. One theory is that the immune system concentrates on attacking these amino acids instead of myelin. Another is that the drug suppresses the population of T cells (white blood cells) that damage myelin, and boosts the population of T cells that prevent damage.

Results published in the journal Multiple Sclerosis in August last year demonstrate continued effectiveness over six years for glatiramer acetate in 101 of 125 patients who took the drug. The average annual relapse rate was 0.42 during the six years; it fell to 0.23 for the sixth year.

A significant difference between glatiramer acetate and the interferons (three are available) is that the antibodies produced by the immune system against the drug destroy the interferons but do not appear to have any effect on glatiramer acetate. This explains why glatiramer acetate is effective over time.

Louise injects the drug daily and has found it to be free of side-effects. "What matters most is that it works for me. I havenít had a serious attack in 18 months. Before taking glatiramer acetate I would have expected to have three or four attacks during this time," she says.

Boggild believes that there is compelling evidence that glatiramer acetate benefits patients with relapsing-remitting MS. "The NICE deliberations are not about efficacy but cost," he claims. "The question is whether the level of benefit for the costs involved is worthwhile, or whether the money could be better spent on treating other diseases."

Andrew Drummond, the chief executive of NICE, acknowledges that the cost-effectiveness of the drugs is "critically important in this appraisal".

The MS Society is concerned that the delay for patients waiting to receive both interferon and glatiramer acetate will lead to an acceleration in many patientsí level of disability. This may mean that they deteriorate to the stage at which they will no longer be considered suitable for the drugs.

Louise hates the uncertainty this brings. "There are decisions to be made. Can I afford to work part-time? How will I get to work if Iím no longer able to drive? Can I carry on living on my own? Any form of independent future is dependent on getting this drug."

The MS Society helpline: 0808 800 8000
Copyright 2001 Times Newspapers Ltd.