Melting ice sculpture in Parliament Square highlights drug access crisis for MND patients

A life-sized ice sculpture will be unveiled in Parliament Square today to highlight the devastating impact of motor neurone disease (MND) and the urgent need for equal access to new treatments.

The sculpture, commissioned by the MND Association, is based on Seckin McGuirk, one of only a few dozen people in the UK living with the rare SOD1 variant of MND. As it melts in the summer heat, it will symbolise the rapid progression of the disease and the limited time many patients have to act.

Seckin said: “I think motor neurone disease is one of the most terrible diseases that human beings are actually facing. Your body is dying while you live in it, and it gradually happens, and there's nothing you can do about it.”

A new drug, tofersen, has been shown to slow or even halt the progression of SOD1 MND in some cases. Around 30 patients are currently receiving the treatment through the NHS. However, Seckin is one of a dozen people who have been denied access despite being eligible.

“I can’t get my head around this issue,” he said. “I mean, I know it comes down to funding, but the funding we are talking about is not a huge amount of money for the NHS, and it’s only a small number of people.”

Representatives from the MND Association and Seckin himself will be at the demonstration and available to speak to the media between 10.30am and 1.30pm.

Later in the day, the campaign group will be joined by members of the All-Party Parliamentary Group on MND to deliver a petition signed by 20,000 people. The petition will be handed to Karin Smyth MP, Minister of State at the Department of Health and Social Care, urging the government to act so that all eligible patients can access tofersen without further delay.

The MND Association says the current situation highlights systemic barriers that are costing patients precious time.

“No one should be denied access to a treatment that could slow their disease simply because of postcode or process,” a spokesperson said. “This is about fairness, urgency and giving people hope.”

The petition calls for immediate funding and clinical support to make tofersen available to every eligible patient across the UK.