Woman with MND Calls on NHS for Life-Saving Drug Access

Seckin McGuirk and her husband Richard stand beside a statue that represents a person living with MND. Photograph: MND Association

In a powerful call to action outside Parliament, Seckin McGuirk—a 57-year-old woman from Rugby diagnosed with a rare genetic form of Motor Neurone Disease (MND)—has become the face of a growing campaign to secure NHS access to a potentially life-saving drug.

A striking ice sculpture of a woman in a wheelchair, unveiled in Parliament Square, poignantly captured the rapid deterioration caused by MND, underscoring the urgency of the fight.

A Promising Yet Inaccessible Treatment

McGuirk is among the 2% of MND patients with the SOD1 gene variant—a specific genetic mutation for which the drug Tofersen has shown remarkable results. Recent trials suggest that Tofersen can slow, and in some cases halt, the degenerative effects of MND in those with the SOD1 mutation.

Despite these promising results, McGuirk and around 20 others in the UK remain unable to access the drug, not due to its availability, but because local NHS services are not equipped to deliver the treatment, which requires monthly lumbar punctures.

Meanwhile, over 30 patients are receiving Tofersen through an Early Access Programme funded by the drug’s manufacturer, Biogen.

Living with Hope

Speaking to the press, McGuirk said: “The minute I found out there’s something that can help me, it gave me hope. You hold on to that and fight as long as you can”.

She described living with MND as “terrifying,” explaining that everyday tasks like getting dressed or making tea have become uphill battles.

Public Support and Inequality in Care

A petition demanding equitable access to Tofersen has garnered over 21,000 signatures, adding pressure on the Department of Health and Social Care.

Campaigners argue that offering the treatment on the NHS to all eligible patients is a matter of basic fairness and could mean the difference between prolonged life and rapid decline.

The Director of Engagement at the MND Association, Richard Evans, highlighted the injustice of the current situation: “It is self-evidently unfair that the NHS is giving it to some people who would benefit from it, and not to others. We are talking about a small amount of resource that could literally be the difference between life and death”.

A Fight for Time and Dignity

The Department of Health and Social Care responded by stating that the Medicines and Healthcare products Regulatory Agency (MHRA) is conducting a rapid review of the treatment to assess its “quality, safety, and efficacy.”

With no cure currently available for MND, and the condition often leading to swift and fatal decline, access to new treatments like Tofersen offers a lifeline for those affected.

As McGuirk put it, “I try to keep the negative thoughts away from my mind, stay hopeful, and carry on fighting”.

For her, and others like her, the outcome of this campaign could buy something priceless: more time, and a chance at dignity.