My Wonder Drug Nivolumab Rejected For NHS Use

I try to be quite jovial and jokey about my situation on this blog – and in life – because I don’t really see what I’d gain by acting any other way. And that won’t change. But I want this particular blog to be a serious one, in order to shine the spotlight on a decision made earlier this week that has left me in disbelief.

Not only that, but its consequences could impact on thousands of other kidney cancer patients across the UK, both now and in the future.

Just last week I wrote a blog about how well my new treatment, Nivolumab, is going. If you haven’t read it, I basically wax lyrical about the drug in 1,200 words. It’s a type of immunotherapy and works by essentially giving your immune system the tools it needs to hunt down and kill those horrible cancer cells. In short, it’s brilliant.

It’s certainly turned around my chances of survival. When I was put on Nivolumab I was at a pretty low ebb. My professor basically said I could take a punt on the new drug or choose another that would prolong my life, rather than save it. It was an easy decision.

Fast forward three/four months and my progress has been remarkable. The majority of my tumours have shrunk by half, if not more, including one particularly fast-growing one that shrunk from 4cm to 2cm – an incredible result for someone who was told to hope for tumour stability in the first scan, not shrinkage.

Being able to share that amazing news gave me a great feeling and I’ve been overwhelmed with the messages of support I’ve since received. But one of the best aspects of writing it was knowing that there would be other kidney cancer patients out there who take hope for their own situation from mine. I knew that those people would agree with my belief that drugs like Nivolumab could be the future of cancer treatment. Amazing results, hardly any side effects (for me at least) – it seems obvious.

And that’s what brings me to the reason behind this blog – and the reason for my disbelief over the last couple of days.

It’s because of the news that Nivolumab has been REJECTED as an NHS treatment for kidney cancer patients. Yep, you read that right. It’s been rejected.

The decision comes via the National Institute for Heath and Care Excellence – otherwise known as NICE (I guess it sounded good at the time). The nice people at NICE decided that Nivolumab is too expensive, and that the quality of life it gives the average patient does not justify its high price.

I don’t pretend to know all the ins-and-outs of the decision so please forgive any mistakes, but I believe that, thankfully, this is just a preliminary decision – so there is still time for NICE to come to its senses and make it available. There’s also time for the US pharmaceutical business behind the drug to lower its price and for the two parties to negotiate a better deal for all parties. Plus, in the meantime there are other ways in which Nivolumab could be funded – such as through the new Cancer Drugs Fund – but there are no guarantees and this is a worrying start. It will take a monumental effort to help NICE change its mind.

Funnily enough I was informed of the rejection on Monday – one day before the NHS’s 68^th birthday. So not the best of presents then – like getting a pair of socks from a millionaire! In 1948 Nye Bevan actually launched the service at a hospital in Manchester which, ironically, is exactly where I was when I heard the news. In fact I was just about to have my ninth Nivolumab infusion at The Christie when I was told.

To be honest, I’d assumed Nivolumab had already been approved by NICE. The drug was in the news a few weeks ago for being one of the fastest drugs ever approved, so I figured that would include kidney cancer. But that approval was in fact for Melanoma, a condition that – I’m told – has even fewer treatment prospects than kidney cancer, which isn’t exactly overwhelmed with different options. But it does have a small band of life-extending drugs and that seems to have been the difference between Nivolumab being approved for one and rejected for the other.

Ultimately, the decision comes down to one thing: money. Nivolumab is more expensive than other kidney cancer drugs, so why cough up more cash to treat a cancer that already has available treatments?

Well, my argument would be this: Nivolumab is a very, very new drug. We don’t know what its true capabilities are. We don’t know just how good it can be. But what we do know is that immunotherapy drugs like Nivolumab – drugs that power up the body’s immune system – are the future. And for that reason, NICE needs to be seen to be supporting it. What incentives would drug companies have to research potential cures if they thought that NICE would just end up rejecting it?

I spoke to a kidney cancer charity boss yesterday who has been instrumental in the fight to get Nivolumab noticed. She told me about a Phase Two trial for Nivolumab in kidney cancer patients from five years ago. Of the patients in that trial, 33 per cent are still alive today. One in three. Apply that probability to my cancer and you get the best odds I’ve ever had since my diagnosis in October 2014. I certainly hope to still be here in five years.

As I said earlier, there is still hope for patients. But it looks like at least one side will have to compromise. Either NICE will have to change its mind on the current pricing or the drug company involved will have to offer a discount. One of the stumbling blocks is actually that another company did offer NICE a discount on a rival drug, and has therefore made Nivolumab look extra expensive. Hopefully a similar discount deal can be brokered here – there’s too much at stake for any other outcome.

Every household received one of these leaflets in 1948 explaining how the NHS worked.

I’ve never met anyone at NICE and I don’t know how it operates or how decisions are made. But I imagine that the people who make them don’t take the job of rejecting potentially life-saving drugs lightly. I bet it’s a bloody hard thing to do – to rubber-stamp a decision knowing you are taking options away from health professionals. At the end of the day, everyone wants to cure cancer. As the Cancer Research adverts tell us: “We will beat cancer.” Of course, what they don’t add to that is “But only if it fits into a cost-effective model first.”

In all seriousness, of course money needs to play a part in the process of selecting which cancer drugs are used and which are discarded. As the now famous article on the launch of the NHS said: “You are all paying for it, mainly as taxpayers, and it will relieve your money worries in times of illness… But it is not a charity.”

I get that. But it is hard for me to comprehend Nivolumab’s rejection when it has completely transformed my odds of survival. I’m very lucky in the fact that I, and apparently around 250 others in the UK, should continue to receive the drug. But other people – who weren’t in the right place at the right time when the chance to take Nivolumab came around – won’t get that chance. Is that right? Is that a system that is working?

Is it fair that the decision to hand out potentially life-saving drugs to cancer patients is basically a lottery? Simply a mix of timing, circumstance, luck, geography – are we happy with that?

People at NICE have to live with the decisions they make. People with cancer may not be that lucky.

P.S. If there are any other kidney cancer patients out there who are taking Nivolumab, I’m told the Kidney Cancer Support Network wants to hear from you as they gather more evidence to try and get this decision overturned. Click here for more.

P.P.S. I was interviewed by Sky News Radio (who supply news for lots of commercial radio stations) about the news – and I’m told there’s a chance it might get aired on various stations. It coincides with the Chilcot Inquiry report on Wednesday so will be at the back of the queue but if you listen to the commercial stations – particularly the locals one for Warwickshire I imagine – you might hear me. Hopefully other press will pick up the refusal soon so the decision can get some exposure.