Fampyra rejected in draft update to NICE MS Clinical Guideline

NICE has published the draft of the updated clinical guideline Multiple sclerosis in adults: management and has invited comments on the recommendations they have made.

The recommendation for Fampyra (fampridine) has not changed; Fampyra is not approved as a treatment for walking difficulties. The draft guideline acknowledges that Fampyra is clinically effective for some people, but it is not considered to be cost effective.

The decision on Fampyra is disappointing, but other aspects of the updated guideline are more encouraging. NICE has expanded information for people thinking about starting a family and included sources of information and support for people with advanced MS and those caring for them. The importance of the multi-disciplinary team is recognised and extended to include additional healthcare professionals such as hospital pharmacists.

The MS Trust will be reviewing all the recommendations and responding to the consultation. We’ll be looking in detail at how NICE reached their decision on Fampyra. To help us build a strong case, we’d like to hear from anyone currently taking Fampyra or affected by this decision – you can contact us by email infoteam@mstrust.org.uk.

You can also comment on the draft guideline directly. NICE will consider individual comments, but you won’t get a formal response and they won’t be posted on the NICE website. The consultation period has opened and runs till 31 January 2022. NICE intends to publish the final guideline in June 2022.

The NICE Clinical Guideline, Multiple sclerosis in adults: management, gives recommendations on how healthcare and other professionals should care for and support people with MS. The current guideline was published in 2014 and a number of areas have been revised. The guideline applies to England and Wales, although Wales may also carry out separate appraisals of treatments.

About Fampyra

Fampyra can improve walking difficulties – approximately one in three people find that their walking speed improves by about 25%. It has been approved for NHS use in Wales and Scotland.

Fampyra is taken as a tablet twice daily. Common side effects include urinary tract infections, dizziness, headache, back pain, difficulty sleeping, feeling sick and stomach upsets. Fampyra is associated with an increased risk of seizures, particularly if the recommended dose is exceeded, so it is important to leave 12 hours between each tablet.

Read more about Fampyra.