Consett man welcomes newly approved 'miracle' drug which could save his sight

Andrew Spenceley said a "miracle" drug now available through the NHS could save his sight. Credit: ITV Tyne Tees

A County Durham man has hailed a "miracle" drug newly approved for NHS use which could save his sight.

Andrew Spenceley, from Consett, has Von Hippel Lindau (VHL) syndrome, a rare condition affecting around 800 people in the UK.

The condition causes tumours and cysts to grow in major organs, which can include the brain and spine. The consequences of these malignant and benign tumours can include paralysis, loss of vision, diabetes, or the need for life-long dialysis.

Andrew has undergone two kidney transplants and more than 50 operations but now has a tumour in his eye, which could threaten his sight.

Andrew Spenceley has undergone more than 50 surgeries. Credit: Handout

The National Institute for Health and Care Excellence (NICE) has now approved use of the drug belzutifan for use through the NHS and Andrew is hoping to be one of 100 people able to use it in the first year.

Andrew said: "I jumped up and I couldn't believe what had happened. I ran through to the other room and shouted to my wife, who nearly had a heart attack. The day from there was just a lttle bit of a blur, knowing that the drug's been approved in England. It's just unbelievable for us, who suffer with VHL.

"You can't put [it] into words. This drug to us, is a miracle drug. Getting my sight, hoping to keep my sight - you're kind of resigned to it, because the only other option I had was the surgery which they told me would not work.

"What this drug will do is cut off the oxygen supply. If it doesn't kill the tumour off, it shrinks it or it'll stay dormant where it is. It's amazing, it's fantastic."

Andrew and his wife had even considered moving to Scotland, where the drug is already available, to receive the medication.

Belzutifan is taken in tablet form three times a day. In clinical trials of the drug, 95% of patients did not experience any growth in their tumours in two years of taking the treatment, while 56% of patients saw their tumours shrink.

Professor Peter Johnson, NHS National Clinical Director for Cancer, said: “This inherited illness is a shadow which hangs over entire families, who live with the fear of tumours growing and needing major surgery on many occasions.

“This new drug, taken as a tablet, is the first of its kind for this terrible condition, and patients with von Hippel-Lindau syndrome now have a different treatment option, which they can take in the comfort of their homes if they need it.

“It promises to improve the quality of life not just for those facing this disorder, but their families and carers too, and is a huge step forward in the treatment of this disease.”

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