Draft decision on Vorasidenib – A patient’s perspective

19 October 2025 | Blog, Campaigning and research, News, Treatments

Liam Vincent-Kilbride was diagnosed with a grade 2 glioma, and following surgery in October 2024 was offered to be part of the Early Access Program, taking Vorasidenib. After 10 months on the drug, he shared his experience and reaction in light of the draft decision from NICE (National Institute of Health and Care Excellence) not to recommend Vorasidenib for routine use through the NHS.

How the decision affects me

I want to start by saying how detrimental this will be and how devastating a blow this is for so many of us who have waited for Vorasidenib to be approved.

Glioma is an incurable cancer and for many of us aggressive treatments have been the only way forward before its arrival.

Vorasidenib gave us time to stave off such treatments and allow us a peaceful gap with a higher quality of life between diagnosis and surgery and then the eventuality of chemotherapy and/or radiotherapy.

To paint the picture of how Vorasidenib has changed my life this past year I need to explain how difficult it was beforehand:

The difficult road to diagnosis

In short, 6 years ago my health began to decline rapidly. As some of you may be aware getting diagnosed with a brain tumour can be an incredibly difficult process. In February this year it was brought to the government’s attention that 70% of brain tumour patients, in Scotland alone, need to present to A&E in order to receive a correct diagnosis like I did. That is another problem all in itself….However what this means is pre-diagnosis, like me, many people end up on vast amounts of prescription drugs to combat the various symptoms they have developed over the years and in an attempt to try and have some semblance of a normal day to day.

At my worst I was on a cocktail of 14 different medications.

And by the time of my diagnosis I was living anything but a normal day to day. I was essentially “living” in my bed… sleeping through the night with an additional 6-10 hours during the day due to extreme fatigue. If I wasn’t sleeping I was vomiting, and in the few moments of clarity I’d maybe manage to eat causing horrific nausea despite the medication.

I had to give up my career and, with being self-employed and without a formal diagnosis, my family (4 year old and a 1 year old) had little support without my wife’s earning.

The impact of medications

The dangers of so many medications is that, again like me, many people can have adverse side effects to these drugs – such as severe weight gain.

This weight gain can then mean that, when finally diagnosed, surgery is too risky an option either meaning waiting too long for the individual to lose weight (often meaning the tumour has grown exponentially and maybe become a grade 3) or taking said risk.

I was lucky to get the surgery. But over the 5 years to that point I went from a bodybuilder at 85kg to 150kg (managing to get to 140kg by the time of surgery).

Quality of life after surgery

Now out of a successful surgery in October 2024 – removing 80% of my tumour – I was prepared to start chemotherapy and radiotherapy which, while it would “hopefully” prevent further growth, would not allow me to return to the man I was before. Not in the short term anyway. If anything, my quality of life would be little more than it was pre surgery for another year.

Even with a positive outcome in my surgery the thought of aggressive treatment was somewhat torturous. I thought I had no good options and mentally I was already beaten down to a point where I saw little to no light.

This is not to mention what this does to those around you. Your friends who lose time with you, your children who don’t know their father or are unable to understand what is happening to him, a wife turned carer and parents facing the potential loss of their child.

However I was presented with an alternative:

New hope

Vorasidenib.

At that point there were only the clinical studies to go off of as the Early Access Program – that I am on – was only just then being presented to a number of eligible patients.

One thing stood out for me in those studies: 86% of participants on Vorasidenib saw no progression in 22 months. Almost 2 years! 2 years I could have a normal life with no thought of aggressive treatment if Vorasidenib worked for me.

It was an easy choice.

How Vorasidenib has changed my life

Now, a year on Vorasidenib, what can I say:

• My tumour has not grown.
• I have had no seizures.
• I have returned to teaching singing.
• That cocktail of drugs has gone from 14 to 3!
• We have a new home that I have been personally decorating and renovating.
• I’ve lost another 10kg and more on the way now I can lift weights again.
• I have been learning two languages to combat the Aphasia I had from surgery.
• I have got to be a father, a husband and a friend again.
• I can eat without the fear of nausea

I am slowly getting to be the Liam I knew before this all began.

Do I still get bad days? Yes! But living with glioma, controlled or not is a challenge. But it’s a challenge that has become bearable both physically and mentally thanks to Vorasidenib.

This week I get the results of my next MRI. A result that – given how my health has continued to improve – I can say with confidence will be good.

However now that result is somewhat tainted…

How NICE’s decision has stripped away hope

Because while NICE say that “The draft guidance does not impact those already accessing Vorasidenib and will still be able to access it as part of their treatment” this is not entirely true.

Since their announcement, those on the Early Access Program have already been told by their oncologists that, if the final decision in November is made that Vorasidenib will not be available on the NHS,  they will only receive 1 more year of this life changing medication. 1 year….only 2 extra months from that incredible statistic I gave before.

I have not yet mentioned that during this last year of the Early Access Program there have been numerous cases that patients on Vorasidenib have seen their tumour shrink… SHRINK! A sentence that I couldn’t have imagined being uttered to me a year ago.

This isn’t a cure….no….but it’s a preventative.

It’s a key to a good life amongst the battles we with glioma are faced with.

This letter to NICE is as much for those that may be denied the opportunity of Vorasidenib in the future as it is for me and the others that Vorasidenib will be taken away from.

My life isn’t cost effective?

And why do NICE not see it as a valid treatment?

It isn’t “cost effective.” In their eyes, patients “in their lifetime” on Vorasidenib will still need chemotherapy and or radiotherapy. So why spend money on Vorasidenib.

And unfortunately the data they have used in draft is just from the clinical trials. And worse, the next pull of data is in 2028… by then many could be taken off Vorasidenib and many could die without access to this drug.

There are now more people taking Vorasidenib worldwide than there were in the trials….yet their stories and results are not part of the equation.

My experience has to matter

Well….I believe they should be, and that is my I am sharing my positive experience with Vorasidenib in the hope that NICE can overturn this decision for all of us battling glioma.

A cure can’t come soon enough….But for now….those with glioma have a means to a life we all deserve. And those around them get to spend more time with the one they love.

And that is the way it should be considered “cost effective”.

Liam Vincent-Kilbride | 16 October 2025

Raising awareness in the news

Liam has also been interviewed by STV News to highlight the issues around approval of Vorasidenib.

See the article and watch his interview here.

We need your help to respond to NICE

The interim decision on Vorasidenib released by NICE can be seen on their website here and we urge anyone who can to share their views and experiences directly with NICE via this link. The deadline for comments is 5pm on Tuesday 4th November.

Decisions about drugs administered in Scotland fall to the Scottish Medicines Consortium (SMC), so to make your voice heard in Scotland contact them here.

Brain Tumour Support will be submitting a response to reflecting the potential impact of this draft decision and the need to change it, so please email us your opinion and personal experiences – whether as a patient or loved one, your voice matters.