'We just want a chance to live' - Peterborough mum launches national campaign after NHS blocks access to life-saving brain cancer drug
A Peterborough mother has launched a national campaign following the decision to deny the use of the brain cancer drug vorasidenib on the NHS.
Families and patients across the UK are devastated after the NHS’s medicines watchdog, NICE, announced it will not approve the groundbreaking brain cancer drug vorasidenib for use on the NHS.
The drug has shown strong results in clinical trials.
The decision has been described as “a crushing blow” for people living with IDH-mutant low-grade glioma, a slow-growing but relentless form of brain tumour that often affects younger adults.
Among those affected by the decision is Taylor Pepper from Stanground.
Taylor’s world changed when she was diagnosed with a IDH-mutant low-grade glioma last year.
Thanks to vorasidenib, Taylor’s tumour shrank, giving her the chance to focus on making precious memories with her young daughter and family.
Taylor still lives with daily symptoms such as dizziness, fatigue, and difficulty walking, and often needs support from others to move around safely. Despite these ongoing struggles, the treatment has allowed her more stability and energy than chemotherapy would have, sparing her from the severe side effects that would leave her too unwell to spend meaningful time with her loved ones.
She said: “All I want is more time with my daughter.
"Vorasidenib gave me that. It is not a cure, and I still struggle with things like dizziness, tiredness and walking without help, but it means I can make memories with my family.
"If I was on chemotherapy, I would be too unwell to do that. To think that this could be taken away from me, and from others, is devastating.”
In response to NICE’s decision, Cllr Jade Seager, representative for Fletton and Stanground ward has supported Taylor in launching a national petition urging NICE and the Department of Health to reconsider their ruling and negotiate a fair price with the drug’s manufacturer, Servier, so that patients are not denied access to a treatment that has already changed lives.
The petition ‘Urge NICE to Reverse Its Decision on the Life-Saving Drug Vorasidenib’ can be viewed at https://www.change.org/support-access-to-vorasidenib.
A petition to the UK Parliament has also been submitted and is currently awaiting approval before it can go live for public signatures. The group hopes this will ensure that their voices are heard at the highest level of government.
Councillor Seager said: “This is not about numbers on a spreadsheet. It is about people, about parents like Taylor who just want to see their children grow up. Vorasidenib offers the chance for more time, more memories, more life. We are asking everyone to sign and share the petition because together, our voices can make a difference.”
The campaign calls for NICE to recognise the human impact behind its decision, that quality of life and time with loved ones matter just as much as survival statistics.