6 May 2025 News
The MND Association is calling on supporters to join our campaign to ensure people living with SOD1 MND can access a life-changing treatment.
People are unfairly missing out on tofersen, the first effective new motor neurone disease (MND) treatment to be identified for decades.
Over 30 patients are accessing tofersen through an Early Access Programme (EAP) supported by Biogen, the developer of the drug. But the MND Association believes 12 people are being refused access, despite having the same level of need.
Tofersen has been shown to slow, and in some cases, halt progression of symptoms in people living with a rare form of MND caused by a variation in the SOD1 gene.
Biogen provides tofersen at no cost to patients or to the NHS, but because it is not yet a commissioned NHS treatment, capacity to deliver the EAP is provided on a ‘goodwill’ basis.
The MND Association has learned that many of the care centres and networks where it provides funding have been advised they cannot accept any more people onto the EAP.
That’s why we are calling on the Government to take urgent action to enable everyone who needs tofersen to access the EAP.
Tanya Curry, CEO of the MND Association, said: “It’s not right that some people who desperately need this drug can’t receive it, while others can. People with MND don’t have time to wait and a solution is desperately needed to break down the barriers to access – and it is needed now."
Please click the link below to sign our petition addressed to Karin Smyth MP, Minister of State at the Department of Health and Social Care, asking her to intervene immediately and help ensure that nobody misses out on this vital treatment.