Thursday, September 9, 1999 Published at 00:20 GMT 01:20 UK
Health BBC News
MS can leave some patients wheelchair-bound
A multiple sclerosis charity has issued an urgent request for sufferers to come forward and help it make the case for a controversial drug to be available on the NHS.
The MS Research Trust has until only the beginning of November to tell the National Institute for Clinical Excellence (NICE) why Beta-interferon should be funded by the state.
NICE will be considering beta-interferon - and another as yet unlicensed treatment called glatiramer acetate - and will decide whether it is a cost-effective treatment for MS sufferers.
The MS Research Trust wants patients who feel they could be benefiting from the drug to help them complete a survey which will be sent on to NICE.
MS drug beta-interferon is available only to some patients
A spokesman said that the short space of time between the announcement that NICE would look at the drug and the deadline for submissions meant it was a race against time to gather the necessary evidence.
She said: "Beta-interferon is available in a very patchy way and we are trying to get data about that.
"But we have only a very short space of time to do this."
NICE will assess drugs
NICE is considering a number of medicines, medical devices and other therapies in its first year, although the government is not compelled to follow its recommendation.
The list of those it will be discussing was only released last month.
There are an estimated 85,000 MS sufferers in the UK.
Beta-interferon has been shown in studies to benefit to those with "relapsing-remitting" MS, in which the sufferer's condition is stable in between "attacks", which prove gradually more disabling.
There is also evidence that it can help those suffering from "secondary progressive" MS, in which the decline is gradual but continuous, with patients often becoming disabled far more quickly.
The evidence suggests that treatment, while not a cure, can delay the progression of the disease by roughly a year.
However, treatment with beta-interferon costs thousands of pounds per year, and many health authorities are unwilling to fund it.
Some doctors have also voiced the opinion that the drug does not offer sufficient benefit to justify the high price to the NHS.
The charity's spokesman said that anyone who even knew anyone with MS
should get in touch with them as soon as possible by calling their freephone
number (0800) 7317679.