NICE says an initial ‘no’ to fampridine (Fampyra)
In a draft updated guideline for the management of people with MS, the National Institute for Health and Care Excellence (NICE) has decided not to recommend fampridine (Fampyra) for use on the NHS in England.
Update: in June 2022 NICE made its final decision about fampridine in England. It stuck with its earlier decision not to recommend the drug. NICE said fampridine was not cost effective. This means they felt the effect it had on people was not worth the price that the drug's makers wanted to charge the NHS. NICE did say that anyone in England who had already managed to get the drug on the NHS could carry on taking it. Fampridine is also not available on the NHS in Northern Ireland.
What is fampridine (Fampyra)?
Fampridine is a drug which aims to improve walking in adults with MS. The treatment doesn’t work for everyone, but can make a big difference to many people’s symptoms. If this drug works for you it can speed up walking by around 25%, on average. It can also help manage MS fatigue.
Fampridine is approved for NHS use in Scotland and is also approved in Wales for eligible people living with MS. In 2022 it failed to get approval for use on the NHS in England. It also remains unavailable in Northern Ireland.
Why has it been rejected?
In England, NICE recommends which drugs should be used in the NHS.
NICE decided to reject fampridine because they don't think it's a cost-effective treatment at the current price offered by the manufacturers.
Everyone deserves access to treatments
Phillip Anderson, our Head of Policy and Evidence, says: “It’s deeply disappointing that NICE has decided not to recommend fampridine for use on the NHS in England.
"Living with MS is relentless, painful and disabling – but we know that fampridine can make a significant difference to people’s walking ability, helping them to live more independent and active lives.
"NICE, NHS England and the manufacturer, Biogen, need to find a solution to make sure everyone who’s eligible for fampridine can access it."
What else is in the updated NICE guideline?
The decision on fampridine is disappointing. But the updated guideline also has some positive recommendations for people with MS.
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 that there's more guidance on advanced MS and end of life care, as well as signposting young carers to support.
And it’s great to see neuro-physios and specialist pharmacists as important members of a multi-disciplinary team. The multi-disciplinary team (or MDT for short) is the group of health and care professionals that should work together to help people manage their MS.
Take action
We believe everyone with MS should have access to life-changing treatments, wherever they live. We’re calling for NICE, NHS England and the pharmaceutical company Biogen to work together to find a solution.
You can help by telling us what it would mean to you to have access to fampridine.
We also want to hear from you if you’ve used fampridine privately or as part of a trial.
Speak up now so we can show decision makers the crucial difference fampridine can make to the lives of people with MS.
We updated this page on 22-06-2022
