27 January 2026 Blog
by Tanya Curry, Chief Executive
Over the last year, we’ve been campaigning for people with SOD1 motor neurone disease to have access to tofersen, a life-changing drug for the 2% of people with MND whose disease is caused by a particular genetic change.
The drug is being provided for free by the pharmaceutical company Biogen while the National Institute for Health and Care Excellence (NICE) decides whether to make it part of standard NHS treatment for people with MND. But over the last year, we’ve been calling on the Government to end the appalling injustice of some people being denied access to tofersen by their local NHS trust – while others are receiving it.
The Government has so far failed to intervene, and its inaction has almost certainly led to avoidable deaths. Over the last few months we’ve seen more and more NHS trusts commit to people in their area being able to access tofersen. As frustratingly slow as progress has been, it means that in most areas where there are people with SOD1 MND, the NHS is now either ensuring they can access tofersen or actively developing plans to do so.
But NHS trusts in at least two areas aren’t. They’re waiting until NICE has made a decision, which will be the end of the year at the earliest.
This is simply unacceptable.
We all know the NHS is under huge financial pressure. And while the drug is free, administering it isn’t. But these trusts are making an active choice, creating a postcode lottery that means some people may die before being given the chance of having a life-changing drug.
This is why we’re now extending our national campaign to focus on the areas where local trusts aren’t actively working to give people tofersen – starting with Southampton. University Hospital Southampton has said it won’t give tofersen because ‘we are facing challenging times and are required to live within our financial means… We have therefore made the difficult decision that we are unable to provide tofersen at this time, because doing so would mean taking resources away from other patients’.
One of the Trust’s stated values is ’Patients first’. But in refusing to make available a life-saving drug, the Trust is falling short of this. Other areas are making it work. Why can’t Southampton?
This is a question of life and death. So we’ll be actively campaigning in Southampton until the Trust agrees to give tofersen to all people with SOD1 MND in the area.
Following the launch of our campaigning in Southampton, we’ll expand our focus to the Walton Centre in Liverpool , which has also refused to give tofersen. We’re seeking clarification about the situation in other areas, and won’t hesitate to turn our attention to those unless we receive the assurances people with SOD1 MND need.
None of this is to absolve the Government of responsibility for the shameful lack of leadership it’s shown on this issue. We’ll continue to hold the Government to account, and are planning a visible presence in Westminster next month. We won’t let it drop - people with SOD1 MND deserve to have access to the only truly effective treatment available.
In the face of the Government refusing to step up, many NHS clinicians and leaders have done a brilliant job of filling the leadership vacuum. Yet the truth is, there are also NHS leaders who haven’t shown this leadership. People with MND in these areas need them to – and they need them to do it now. When you have MND, every day matters.
Our work on tofersen is about more than the campaigning you’ve seen. We’ve been working behind the scenes with local trusts and bringing together clinicians to learn from each other about the best way to establish a tofersen service. This has made a real difference. And a big part of our work this year will be engaging with NICE to ensure people with SOD1 MND are heard throughout the decision-making process.
Some people have challenged us about whether we should be going further. In the absence of government intervention, they’ve asked us to directly fund the clinical administration of tofersen where local trusts are falling short. We've considered this carefully. The NHS trusts are making a choice not to prioritise their services and resources for people with SOD1 MND and so are failing to deliver an effective treatment for those people. It is not our role, or for any charity like us, to pick up such a core aspect of medical treatment from the NHS.
We cannot send a signal to the NHS that, when money is tight, it can expect us to pick up the slack on a core responsibility.
Our role as a charity is clear: we are here to fund MND research, provide holistic support, and to campaign and influence for change in the fight against MND. So we will keep campaigning locally and nationally for positive change. We will do all we can to make the difference people with SOD1 MND need.
You can help. Write to your elected representative to let them know what you think about this important issue, and post your views on social media.
The more people who get behind this campaign, the louder our voice will be, and the more likely we will be to end the scandal of inequity of access to tofersen.