Action against NICE’s decision on tofersen
22 March 2024
22 March 2024
Last week, we heard that despite an appeal and evidence being submitted by leading MND clinicians, National Institute for Health and Care Excellence (NICE) confirmed its decision to appraise the drug tofersen through the Single Technology Appraisal (STA) route. This means that it’s highly unlikely that tofersen will be approved for use in England and Wales.
Tofersen is the first treatment for MND that has effectively slowed down and even stopped disease progression in some people living with MND. NICE’s decision is therefore extremely perplexing and sets a worrying example for future precision medicines entering the UK market.
What has happened since our announcement last week?
Our next steps
We will continue to work with all those who share our frustration and anger with this decision and will ensure that we combine our influence and voice to take action on behalf of the MND community.