Tofersen update

On Friday 30 January, we shared an update about the situation around access to the life-saving drug tofersen for people with SOD1 MND in the Southampton area. 

In good faith, we published this on our website and shared it on our social media channels.  With hindsight, we published this too quickly, without allowing time for further discussion, or for appropriate actions to be taken by other parties involved. 

We now recognise this caused confusion and upset. We are sorry. It was never our intention to cause confusion or upset, and we apologise to those affected.  

We have since removed the update from our website and social media feeds. 

Campaigning to continue  

The whole MND community recognises this is an extremely important issue. Tofersen slows, and in some cases, halts the progression of MND symptoms for people whose disease is caused by a particular genetic change. 

While tofersen is going through the National Institute of Health and Care Excellence (NICE) approval process, a number of NHS trusts are administering tofersen locally through the Early Access Programme (EAP). 

In other areas, clinical leads and hospitals are arranging for their patients to receive the treatment via the EAP at other trusts.   

But, sadly, some people with SOD1 MND are still not being offered access. And we are deeply concerned about access for people who will be diagnosed with SOD1 MND in the months to come. So we will continue to campaign until everyone with SOD1 MND has access to tofersen. 

We have been campaigning for the Government to give equal access to tofersen since last Spring. 

This has included organising a petition signed by more than 20,000 people, arranging an ice sculpture installation outside Parliament to raise awareness, a video message to Health and Social Care Secretary Wes Streeting from one of the people missing out, as well as meeting with Government minister Zubir Ahmed and organising an event for MPs to hear directly from people affected by the issue. 

We will continue to campaign until the Government finally intervenes. 

We are also exploring how we can work with other charities to make the case for improvements to EAPs, so we provide as good access to them as already happens in other countries, so avoiding more of these postcode lotteries in the future. 

A big part of our work this year will also be working to ensure that the voices of people with MND are heard as part of the NICE process for deciding whether tofersen should be available on the NHS as a standard treatment for people with SOD1 MND. 

While we continue working nationally, we also want to be agile and responsive, and so we are also focusing on working with trusts where we know there are people who could benefit from tofersen but aren’t able to access it. That includes public campaigning in areas not doing enough to make that happen. 

Following conversations with the University of Southampton Hospital Trust about the local situation, we have now stopped campaigning in the area. 

We will continue to consider local campaigning in areas where people with SOD1 MND are unable to access tofersen. We will provide updates about our campaign as we have them.