Fife dad with incurable brain tumour in plea over drug that 'gave him his life back'

A Fife dad diagnosed with an incurable brain tumour is urging medicine regulators to approve a drug that he says has given him his life back.

Liam Vincent-Kilbride’s life was shattered when he was diagnosed with Glioma, a cancerous brain tumour, over two years ago.

Despite undergoing surgery last October, his chances of surviving more than five years is just 13%.

The Balmullo man was given early access to the tablet Vorasidenib. He says it has taken him from being virtually bedridden to rebuilding his career and family life.

Fife man Liam Vincent-Kilbride is campaigning to have the drug Vorasidenib approved on the NHS. STV News

The drug, which would cost £1,500 a month to buy privately, has been through clinical trials and approved as safe to use.

The 31-year-old, who was a personal trainer and performing as an actor and singer when he began to feel unwell, takes one tablet a day.

A final decision on approving the treatment on the NHS is expected in the coming weeks.

He told STV News: “I was really only presented with watch and wait and hope it doesn’t grow, hope it doesn’t get worse or hit it with a very aggressive chemo and or radiotherapy.

“I was ready for that. I wanted my life back. I had lost so much.

“I was then presented with the early access scheme for Vorasidenib which is what I’m using now.”

Liam was told this week by doctors that his tumour was stable and had not grown.

He added: “I’ve got my life back. I’m starting to rebuild my career. I get to be a father, I get to be a husband, a friend. I get days. I get time.

“I don’t think I could have sat here and had this conversation a year and a half ago because the exhaustion, the nausea, everything that came with it was horrific.”

NICE, the National Institute for Health & Care Excellence, has issued draft guidance to reject the drug.

A spokesperson said they are aware of the impact that a decision not to recommend a treatment can have.

However, they say they also need to consider the evidence of a treatment’s clinical and cost-effectiveness.

The Scottish Medicines Consortium, which is currently reviewing Vorasidenib, is expected to issue its advice early next year.

Liam added: “It’s really painful to be told that your life is not cost-effective.

“To get those answers, there needs to be people like me on Vorasidenib for at least 20 years, and they’re going to be taking it away from me in a year’s time.

“It’s speculative to say it doesn’t prolong life, and yet we’re now allowing that time to show that evidence.

“Only yesterday I was told that if this doesn’t get overturned and SMC agree with NICE, this drug will get taken away from me.”