Donal MacIntyre Show, BBC Radio 5 live
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.
Pressure
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.
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.
Inconclusive
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.
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