Brain cancer patients will not be able to use a new drug that slows or stops tumour growth after it was rejected for NHS use.
The National Institute for Health and Care Excellence (NICE) has turned down vorasidenib because of uncertainty in the economic data and a lack of clarity over whether the drug improves overall survival chances, according to draft guidance it has published.
Vorasidenib is for people aged 12 or over who have had surgery for types of low-grade glioma with either the IDH1 or IDH2 genetic mutations.
Current treatment includes surgery, followed by radiotherapy or chemotherapy, and patients who took vorasidenib in clinical trials reported positive results, including their tumours shrinking.
The drug, a daily pill, also delayed the time before they needed another intervention.
Taylor Pepper, 35, from Peterborough, was diagnosed with an oligodendroglioma brain tumour in 2024 following a routine eye test, which detected swelling behind her right eye.
Mrs Pepper, who is married and has a six-year-old daughter, had to stop running her business and give up her driving licence.
Surgeons at Addenbrooke’s Hospital in Cambridge removed most of her tumour, but could not take it all because of its location.
Mrs Pepper joined a clinical trial of vorasidenib. The drug shrank her tumour, and she will stay on it.
“As much as I keep positive, it is very scary,” she said. “But with the treatment, I know I’m in a good place.
“Being able to take this drug has given me a lot more benefits. I’m able to live a normal life and make memories with my little girl.
“It’s devastating that this is a no (from NICE), because brain tumour patients have had to wait a long time for decisions on treatment anyway, so having to wait longer for a decision on this will cause a…
