A Cambridgeshire woman who has a brain tumour says she is "devastated" that a new targeted treatment may not be made available on the NHS.
Taylor Pepper was diagnosed with oligodendroglioma following a routine eye test which detected swelling behind her right eye in April 2024.
This week, she has shared her story after the National Institute for Health and Care Excellence (NICE) published its draft guidance regarding vorasidenib.
The 35-year-old from Peterborough, who is married to Chris and has a six-year-old daughter, said the diagnosis meant her world fell apart as she had to tell her family the news, stop running her business and give up her driving licence.
Surgeons at Addenbrooke's Hospital in Cambridge removed most of the tumour during an awake craniotomy, but it was too risky to remove the rest because of its location.
Therefore, Taylor was offered chemotherapy and radiotherapy, or the chance to take part in a clinical trial.
After a nerve-wracking wait, she was accepted onto the trial and now takes vorasidenib daily along with other medication to counteract potential side effects and can lead a relatively normal life.
Her three-monthly scans have since shown that it has shrunk her tumour. She will be able to continue taking vorasidenib.
Taylor said: "As much as I keep positive, it is very scary... 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 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 lot of stress and worry.
"They've managed to find a drug that's not as harsh a treatment as chemo and radiotherapy meaning we're able to do so much more.
"Having a brain tumour is hard enough, especially when you’re told it’s incurable and that chemo and radiotherapy would only make it worse. You feel desperate.
“My last MRI scan showed a small decrease in size which is incredible so I want to stay on this drug as it’s allowed me to carry on as normal as I can. Anyone facing this diagnosis should be eligible for this drug.”
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Other countries such as the USA have already approved vorasidenib as a first-in-class option for this group of patients.
Eligible families hoped England would quickly follow suit, but the NICE Committee said its draft decision was based on uncertainties in the economic model and lack of clarity on whether vorasidenib improved overall survival.
In a statement, NICE said: “We’re of course aware of the impact that a decision not to recommend a treatment can have.
“The views of people who are directly affected by the recommendations we make, as well as their carers and the organisations that represent their interests, are important in the development of our guidance.
“However, we also need to consider the evidence of a treatment’s clinical and cost-effectiveness in our decision-making. “
Dr Simon Newman, chief scientific officer at The Brain Tumour Charity, said: “This draft decision is very disappointing as it means more patients will have chemotherapy and radiotherapy earlier than necessary, which can be effective, but which can have significant long term side effects.
“We are urgently asking our community to help turn this draft ‘no’ from NICE into a ‘yes’.
“Outcomes for brain tumour patients remain among the poorest of any cancer, so we need to work with all stakeholders to ensure great science is translated into medicines that are available on the NHS as quickly as possible.”
Dr Michele Afif, chief executive at The Brain Tumour Charity, said: “While we recognise the purpose behind the UK’s specific regulatory arrangements, it is more than disappointing to see how decisions like these - even in draft - create yet another barrier to accessing new treatments for patients whose access to promising advances has been minimal and unmet need painfully high.
“The Brain Tumour Charity continues to campaign for a regulatory system that is flexible, responsive to the unique challenges people diagnosed with a brain tumour face everyday and open to reviewing decisions so that they can access promising new treatments without further delays”
To take part in The Brain Tumour Charity survey, visit: https://braintumourcharity.qualtrics.com/jfe/form/SV_3qG0tVzyMf4xig6
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