30 January 2026 News
University Hospital Southampton NHS Foundation Trust has today confirmed it will ensure the people with SOD1 MND in its area can receive life-saving drug tofersen.
The announcement comes following campaigning by the MND Association and people in the MND community - on social media, via the media, in Parliament and behind the scenes - shining a light on the Trust’s refusal to administer the treatment to people with the terminal disease.
For those eligible, access to tofersen represents hope, choice, and precious time. The drug is being provided free on an Early Access Programme while it goes through the NICE appraisal process.
While the majority of people with SOD1 MND are being given the drug by their local NHS trusts, some trusts are refusing to make the necessary arrangements, creating an unacceptable postcode lottery.
Until today’s (Friday 30 January) about-turn, that included University Hospital Southampton.
Tanya Curry, Chief Executive of the MND Association, said: “This is a vital and positive step forward for people affected by this devastating disease – this decision by University Hospital Southampton NHS Foundation Trust could be life-saving.
“While we strongly disagreed with the Trust’s original decision, it deserves credit for the action it has now taken.
“We are, of course, delighted at this decision. But our work doesn’t stop. Southampton has proved that change is possible. We will continue campaigning until that change happens for everyone.”