More MS news articles for November 2000

NICE and beta interferon

9 November 2000

Dear MS Society Member

By now, you have probably heard through the media that NICE, the National Institute for Clinical Excellence, has been told to think again about its view that beta interferons should not be provided in the NHS for people with MS.

I am writing to set out exactly what this means and what will happen now.

In August 2000, the NICE Appraisal Committee decided that beta interferons should not be provided in the NHS for people with MS. The MS Society and a number of other organisations lodged a formal appeal to NICE's Appeal Panel against that decision. We objected to the decision for two main reasons:

  1. NICE's Appraisal Committee had taken its decision without fully understanding multiple sclerosis or the effects of beta interferons. This was partly because NICE never spoke directly to anyone with MS.
  2. The NICE Appraisal Committee said that beta interferons were too expensive compared to other treatments but did not say what those treatments were. This meant that no-one could argue whether or not NICE was right, as we never knew what beta interferons were being compared against.
NICE's Appeal Panel has now decided that the NICE Appraisal Committee must look again at the decision not to provide beta interferons in the NHS. Note that the actions of NICE affect England and Wales only. In Scotland, the Health Technology Board is just beginning to consider beta interferons for people with MS. It will consider the issue from scratch and will not report for some months. In Northern Ireland, the Minister for Health Bairbre de Brún will decide on the use of beta interferons.

The NICE Appraisal Committee will now look again at beta interferons for people with MS in December 2000. This means a final decision is likely in January 2001.
By then, this whole process will have taken well over a year and caused significant worry and stress to people with MS that could have been avoided. More importantly, while this process has been going on, some people will have passed the point at which the drugs can be of use to them.

NICE had the opportunity to make the right decision in August. The fact that it didn't will mean five more months of distress for people with MS.

What happens next?

While the re-consideration by the NICE Appraisal Committee is promising, we cannot take for granted that it will recommend making beta interferon widely available. The MS Society will be doing all it can to make NICE see sense. But your input as individuals can also be hugely influential.

It may sometimes seem that the letters you write, the phone calls you make, the articles you organise in local papers are small things. But as a result of all our combined efforts, this issue now has a high public and political profile - and government ministers are acutely aware of this.

Those in England and Wales can continue to make their voices heard. Make contact again with your MP or AM drawing attention to the continuing distress caused to people with MS, questioning whether NICE is really competent to take these important decisions, and - if your representative has been supportive - telling them how much you value their support. If you haven't got the time to write then call the House of Commons on 020 7219 3000 or the National Assembly for Wales on 029 20 898 200.

Yours sincerely

Peter Cardy
Chief Executive
MS Society

Last Updated: November 9, 2000