Campaign for access to lifesaving MND treatment reaches 10,000 signatures

A campaign focused on people with a rare form of terminal illness who are unable to access a groundbreaking new drug, despite it being currently provided for free to the NHS, has reached 10,000 signatures on its petition.

The findings show access to tofersen, the first effective new motor neurone disease (MND) treatment for decades, has become a lottery – with people unfairly missing out despite urgently needing the treatment.

Over 30 patients are taking it through an Early Access Programme (EAP) supported by Biogen, the developer of the drug. However, the MND Association estimates 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.

One of those affected is Seckin McGuirk, 56, a retired maths teacher from Rugby, Warwickshire, who has been told she cannot access tofersen.

She said: “I just struggle to comprehend if such a drug is available, and just because there is no staff to deliver that drug, they can’t take patients in. It is not many people.

“It’s such a terrible illness, it feels like every day there is something going away from you. Every day you’re waiting, you’re losing something.”

The petition can be found at https://act.mndassociation.org/2025-prescribe-life-tofersen.