Patients Seckin and Ellis are desperate to access tofersen (Image: MND Association)
A desperate mum with motor neurone disease has shared a heartbreaking message for Wes Streeting, pleading with him to help her access a groundbreaking treatment that could slow her symptoms. Seckin McGuirk, 57, was diagnosed last year with a form of MND caused by the SOD1 gene mutation, which can be targeted by a new drug called tofersen. But despite the medication being offered free to the NHS, no hospital is willing to fund the bed and care needed for her to access it.
Some 40 patients are thought to be receiving tofersen through the scheme but around 20 are being unfairly denied access. Appealing to the Health Secretary to step in and ensure access for everyone who could benefit, Seckin writes: “At last year’s Labour conference, you said the NHS has become a two-tier service. You’re right. Why else would it save some people’s lives by giving them tofersen, but not mine and others in the same situation?
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Read more: 'Time is running out' for patients denied life-changing drug on NHS
“Every day, my MND symptoms get worse. You’ve got the power. Please use it.” The SOD1 gene mutation causes around one in 50 cases of MND. Tofersen works by stopping the production of toxic proteins.
A fortnight ago, it was approved for use in the UK by the Medicines and Healthcare products Regulatory Agency (MHRA), which judges whether new drugs are safe and effective.
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But the National Institute for Health and Care Excellence is expected to take months to decide whether the drug is cost effective enough to be routinely prescribed on the NHS.
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In the meantime, tofersen’s manufacturer Biogen has been offering the treatment free of charge to the NHS through an early access scheme. However, only certain hospitals are participating and none have the capacity to treat mum-of-one Seckin.
The care needed to administer the drug — which requires a monthly lumbar puncture in hospital — is thought to cost between ￡15,000 and ￡30,000 per patient per year.
Addressing Mr Streeting directly, Seckin, of Rugby in Warwickshire, added: “Every day, the list of things I can do gets shorter.
"Wes, I ask you, honestly and from the heart, how would you feel if you were in my place? Or if it were your wife, your mother, your father, or, God forbid, if your own children faced this devastating disease?
"Your body is shutting down, there is hope, but that hope is being held back by bureaucracy, by complexity, and by a lack of funding. We don’t need more battles; we need the NHS to support, guide, and stand with us. Help should not be offered to some while others are left behind.”
Sufferers in other parts of the UK are also desperate to access the drug, including Ellis Millard, 32, of Pontypridd in Wales. His mum died of MND in June 2021 and he was diagnosed in November 2023.
Ellis said his condition has deteriorated “quite quickly” while waiting to access tofersen. Explaining that the drug would give him “just a bit of hope”, he added: “I’m still very much independent now but if I don’t get on the treatment, I could lose that. It means me being able to have independence and quality of life.
“I feel like I’m being denied basic healthcare. There is a treatment out there that can help me, and yet I’m having to fight just to try and get onto it. This is despite everything else going on with the stresses of being diagnosed with a terminal illness.”
A video of Seckin reading her message will be shared on social media by the Motor Neurone Disease Association. Richard Evans, the charity’s director of engagement, said patients like her and Ellis “don’t have time to wait”.
He added: “Every day that people are missing out on this drug means another day that their MND symptoms progress.
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“Tofersen remains free and has now been licensed by the Medicines and Healthcare products Regulatory Agency (MHRA). We can’t accept that the resources to administer this life-saving treatment to Seckin and just 20 other people living with SOD1 MND cannot be found.
“The Health Secretary, Wes Streeting, has the power to intervene — the All-Party Parliamentary Group on MND has requested a meeting with him, we’ve urged him to listen and engage with us, we hope now he will sit up and take notice of this powerful message. This shocking situation can’t go on any longer.”
A Department of Health and Social Care spokesperson said: “This Government is committed to improving care for people with neurological conditions, including those with MND, and ensuring that they receive the support and treatment they need."
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