The MS Trust is dismayed by NICE's recommendation. We do not believe it is in the best interests of people with MS or the NHS.
NICE has published its preliminary decision on the use of Copaxone (glatiramer acetate) and the five beta interferon drugs (Avonex, Betaferon, Extavia, Plegridy and Rebif) by the NHS in England. This follows a review of the cost effectiveness of these six disease modifying drugs.
If you are already taking one of these drugs, you will not be affected and can continue without change.
NICE is proposing that:
- Extavia is recommended 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 invites comments on this decision. The closing date for feedback is 24 January 2018.
NICE will meet again on 6 March 2018 to review the comments received and results of further discussions with the manufacturers of the drugs.
What is the MS Trust's reaction to this?
The MS Trust is very disappointed in this initial decision. We do not believe that NICE's recommendations are in the best interests of people with MS or the NHS. We strongly believe that all current treatments should remain available as treatment options for all eligible patients.
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 all comes down to cost - Extavia is the cheapest option.
These recommendations would take away choice from people with MS. In our view, the recommendations do not take account of:
- 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 drugs
We are also unhappy with NICE's timing of the consultation, which was published just before the Christmas holidays.
What is the MS Trust going to do now?
We are fully committed to supporting people with MS to get the best and most appropriate treatment for them. We will be submitting a response to the NICE recommendations.
We asked you for your views on the recommendations to inform our response to NICE. Over 500 people with MS and over 100 health professionals completed our short questionnaire; thank you very much indeed for your support. We are now analysing the survey and preparing our response.
If you missed the survey but would still like to have your voice heard, you can submit your own comments directly to NICE by 24 January 2018.
An MS Carers Week retrospective
9 Jun 2021 - 00:00
In this blog, Martin discusses the importance of raising awareness of caring and the contributions that carers make to the MS community.
Our approach to MS and caring
9 Jun 2021 - 00:00
Adam, who was diagnosed with MS eight years ago, and his wife, Sharon, share their MS caring journey as well as some tips for people in a similar position.
The challenges of choosing a DMD as a new mother
2 Jun 2021 - 00:00
Becoming a parent for the first time is often considered one of life’s biggest and most joyful moments. However, this time can also raise new challenges as discussed by Jenna who talks about her MS diagnosis, pregnancy and the challenge of choosing a new disease modifying drug after giving birth to her son.