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NICE proposes rejecting five drugs for relapsing MS - MS Trust responds

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NICE has recommended Extavia, but rejected Copaxone, Avonex, Betaferon, Plegridy and Rebif in its preliminary appraisal of MS drugs. The MS Trust has responded to NICE’s consultation in the strongest possible terms.

On 20 December 2017 NICE published its preliminary decision on the use of Copaxone and the five beta interferon drugs (Avonex, Betaferon, Extavia, Plegridy and Rebif) by the NHS in England. It is not yet clear what implications this will have in Scotland, Northern Ireland and Wales.

NICE has recommended the following:

  • Extavia is recommended as a treatment for people with relapsing remitting MS or secondary progressive MS with continued relapses
  • Copaxone, Avonex, Betaferon, Plegridy and Rebif are not recommended
  • Anyone already taking one of the drugs will not be affected by this guidance and can continue without change until they and their neurologist consider it appropriate to stop.

NICE has acknowledged that all six drugs are equally effective at reducing the number of relapses and slowing down disability progression. The decision to approve Extavia and not the other five drugs is based on the cost of the drugs; Copaxone and the other beta interferons are more expensive than Extavia.

If you are already taking one of these drugs, you will not be affected and can continue without change. 

The other disease modifying drugs are not affected by this decision and will continue to be available (Aubagio, Tecfidera, Gilenya, Mavenclad, Zinbryta, Tysabri and Lemtrada).

Our response

We are very disappointed with NICE’s recommendations and we do not believe they are in the best interests of people with MS or the NHS.

Before Christmas we set up online consultations for people with MS and for specialist MS health professionals to gather views on the NICE recommendations. We received over 500 responses from people with MS and over 100 responses from health professionals – thank you very much for your input!

Hearing your views was incredibly helpful, and we have used them to help us write our response to NICE. We strongly believe that all current treatments should remain available as a treatment option for all eligible patients.

We are particularly disappointed that the NICE recommendations do not acknowledge individuality and would take away choice from people with MS. In our response, we have discussed how the recommendations do not take into account:

  • the differences in how treatments are administered
  • the diverse lifestyles of people with MS, and how different treatments suit different people
  • the differing tolerances of individuals to the side effects of the disease modifying drugs

Read our response to NICE.

The NICE appraisal committee is due to meet again in March to discuss the consultation responses. We will provide updates via our website, emails and social media channels as soon as we hear back from them. We remain fully committed to supporting people with MS to get the best and most appropriate treatment for them.

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