The National Institute for Health and Care Excellence (NICE) has decided not to recommend fampridine (Fampyra) for use on the NHS in England. The announcement comes in updated guidelines for the diagnosis and management of MS.
What is fampridine (Fampyra)?
Fampridine is a symptom management treatment which aims to improve walking in adults with MS. This treatment doesn’t work for everyone, but it can make a big difference to some people’s symptoms. If it does work it can speed up walking by around 25% on average. It can also help manage fatigue.
Fampridine is approved for NHS use in Scotland and Wales for eligible people with MS. Yet it’s still not available in England and Northern Ireland.
Why has it been rejected?
In England, NICE recommends which drugs should be used on the NHS.
NICE have rejected fampridine because they don't think it's a cost-effective treatment at the price offered by the manufacturers.
NICE’s recommendation doesn’t apply to people who’ve already started treatment with fampridine on the NHS. So they should be able to continue.
The initial decision from NICE was made in December. Back then, hundreds of you got in touch to share what access to fampridine would mean to you. These powerful stories were a vital part of our response to NICE’s consultation on the guidelines.
We’re deeply disappointed with this final decision by NICE. We’re calling on NHS England and the manufacturer, Biogen, to look for a solution. They need to make sure everyone who’s eligible for fampridine in England can access it.
What else is in the updated NICE guideline?
The guideline also has some positive recommendations for people with MS.
It recommends informing people with MS that they should have a comprehensive review of their care at least once a year. This would be to check in on their needs. And they can ask their healthcare professional for this if it hasn't happened.
The guideline also recommends that people suspected of having MS, but who haven't been formally diagnosed, also have a review. And for them to receive information and a point of contact for advice about any change in symptoms.
There’s an increased focus on health and care professionals providing information and support to people who are pregnant or planning to have children.
We’re also pleased there's more guidance on advanced MS and end of life care, as well as signposting young carers to support.
There’s focus on recognising and assessing fatigue in people with MS. This includes recommendations that healthcare professionals ask people about fatigue. And offer to work with them to find the best ways for them to self-manage fatigue.
Finally, it’s great to see neurophysios and specialist pharmacists as important members of a multi-disciplinary team. The multi-disciplinary team (MDT) is the group of health and care professionals working together to help people manage their MS.
What we're doing
We believe everyone with MS should have access to life-changing treatments, wherever they live.
So we’re calling on NHS England and Biogen to look for a solution. They need to make sure everyone who’s eligible for fampridine in England can access it.
Join the campaigns community to have your say, take action, and change lives.