Page last updated at 00:01 GMT, Sunday, 21 February 2010

Multiple sclerosis charity urges end to drug scheme

By Phil Kemp
Donal MacIntyre Show, BBC Radio 5 live

Amanda Knight, who has multiple sclerosis
Amanda Knight thinks patients have a right to know if the drugs have worked

The MS Society is calling on the government to scrap a scheme which offers disease-modifying drugs to some people with multiple sclerosis.

Since 2002, the scheme has enabled the NHS to prescribe the drugs while their cost-effectiveness was evaluated.

But the charity argues the study is flawed, and fears the scheme is hindering access to other therapies.

The government insists the scheme has significantly improved the overall care and support available to MS patients.


Amanda Knight was diagnosed with multiple sclerosis in early 2001 at the height of a campaign to have a range of disease-modifying drugs such as beta interferons made available on the NHS.

It is premature to reach any conclusion... from this first interim analysis
Department of Health

Later that year, the National Institute for Clinical Excellence (Nice) ruled that such drugs were not cost-effective.

"We were all extremely angry," Ms Knight told BBC Radio 5 live's Donal MacIntyre programme.

"I wanted the choice to try them. I wanted them to be made available and the arguments that they were coming up with, I didn't agree."

Following a high-profile campaign and pressure from patient groups, the government reached a compromise agreement with the four pharmaceutical companies which manufactured the drugs, known as the "Risk-Sharing Scheme" (RSS).

Under the RSS, the drugs would be made available for a period of 10 years, while further tests were conducted to determine their cost-effectiveness.

During that time, if the drugs were found to perform less well than the manufacturers claimed, they would have to subsidise the cost by dropping their prices.


The scheme, which has so far cost around £350m, has given more than 12,000 people with MS access to drugs, and data is being collected on about 5,500 patients.

A brain scan of a patient with MS
MS is the most common neurological condition among young adults in the UK
Women are almost twice as likely to develop MS as men
Symptoms include a loss of sensation and balance, paralysis, pain and memory and vision problems

Having previously been refused the drugs, Amanda was able to get them under the scheme.

But she was disappointed with the results.

"My consultant took some blood, did some further tests and decided to take me off it because it wasn't doing anything for me. I was wasting my time," she said.

Eight years into the scheme, it is still not clear whether the drugs are as cost-effective as their manufacturers claimed at the outset.

An evaluation of results from the first two years of the RSS was only published in the British Medical Journal in December 2009.

The study failed to reach any conclusions about the cost-effectiveness of the drugs, but despite the original terms of the RSS, the government has not negotiated any change in their price.

'More meaningful results'

Simon Gillespie, chief executive of the MS Society, criticises the data collected so far as "incomplete and inadequate", and argues it is time to terminate the scheme.

"The scheme has been so badly run, so badly administered and has so many problems with the methodology and the data collection that's there's nothing meaningful coming out of it."

Donal MacIntyre, Radio 5 live, Sunday, 21 February at 1930 GMT
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The charity does not want patients currently taking the disease-modifying drugs to stop if they are deemed to be clinically beneficial.

But it believes that cost of continuing the RSS on its present scale is hindering access to potentially valuable new therapies.

Amanda Knight is now taking another form of disease-modifying drugs, which she says appear to be working.

But she would still like a more official verdict on her earlier treatment.

"People spent so much effort campaigning for these drugs," she says. "I think they deserve to get a proper answer."

A spokesman for the Department of Health said: "The Multiple Sclerosis Risk-Sharing Scheme has significantly improved the overall care and support available to people with MS.

"It is premature to reach any conclusion about the cost-effectiveness of the drugs used to treat relapsing remitting MS from this first interim analysis," the spokesman added.

"The independent Scientific Advisory Group is taking steps to address several important methodological issues, which are integral to the scheme.

"We expect that their work will lead to more meaningful results at the next analysis to be undertaken later this year."

Listen to the full report on the Donal MacIntyre programme on BBC Radio 5 live on Sunday, 21 February 2010 at 1930 GMT or download the free podcast. Contact the programme by emailing

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