A man with a rare form of Motor Neurone Disease (MND) says he could die within a year while waiting for access to a treatment that could significantly prolong his life.
Marc Powell, from Whaley Bridge, Derbyshire, has the SOD1 variant of the disease, which affects fewer than 100 people in the UK.
Drug manufacturer Biogen is supplying Tofersen free of charge to specialist centres, including Salford Royal, while the NHS decides whether to fund it.
However, hospitals must cover the costs of administering it, so numbers are limited. The Northern Care Alliance NHS Trust said Tofersen was not currently commissioned by NHS England and required specialist expertise and support to deliver safely.
Marc, who celebrated his 60th birthday this week, was diagnosed with MND in January after noticing problems with his speech.
“I got home and sobbed my heart out with my wife,” he said.
“I thought ‘That’s it – life plan out of the window, not much time left.’
“Telling my three kids was the hardest part for me as we’ve always been so close as a family. So the time I have left is the most important thing to make more memories.”
Marc’s movement is still largely unaffected. But his mum died from the same disease so he knows what comes next.