The Wonder Drug Shrinking My Tumours That the NHS Can't Use

25/07/2016 17:31 | Updated 25 July 2016
Peter Nicholls / Reuters

A few months ago I was facing up to the very real possibility I might die from cancer. All treatments had failed and doctors started to talk about drugs that would prolong my life rather than save it. The cancer had spread from my right kidney to sites around the body and options were limited.

I essentially had two choices: take a life-prolonging drug and eventually succumb to the disease or take a gamble on a new drug that had just come to the UK. Of course - like at the end of those Saturday night TV gameshows - I gambled.

Fast forward to today and, yes, that horrible possibility still exists. But the gamble could pay off, because there is now a chink of light at the end of the tunnel. There is hope where before there was none.

But there is also anger. Not at my situation - or towards my kidney cancer - but at the fact that my special new drug has been rejected for NHS use for cancers like mine.

The drug in question is Nivolumab, a type of Immunotherapy that arms your immune system with the tools it needs to hunt down and kill tumours. In just three months it helped shrink four of my six tumours by at least half. An incredible result.

So when I heard about health watchdog NICE's decision to reject, I couldn't understand why. Here was a clearly superior drug for someone like me yet it was turned down. Apparently, like everything in life, it came down to money. NICE wanted a discount deal while the American company behind the drug refused to budge on price.

Thankfully, there is hope. The decision was a preliminary one and cancer specialists from across the UK have until October to try and change opinions. One of those specialists is the professor overseeing my care at The Christie in Manchester, who has joined others from his profession in writing to NICE demanding answers. Hopefully the pharmaceutical company lowers its price too and the duo can meet in the middle.

After all, it's health professionals on the front line who have to deliver bad news when no other treatments are available. How frustrating must it be for them to know about Nivolumab but not be able to use it?

Ultimately, it's patients who pay the price for the system's shortcomings. NICE's decision was purely for kidney cancer yet it followed their recent move to approve Nivolumab for Melanoma, a particularly horrible disease. Another NICE decision saw the drug rejected for lung cancer yet in Scotland - where a different watchdog exists - it was approved. So lung cancer patients above the border will have access to Nivolumab but the rest of the UK won't. You still with me?

It's an incredibly complicated system and I won't pretend to understand it. But what I do know is that cancer patients will suffer the most.

Luckily for me, the scheme I'm on gives me access to Nivolumab for the foreseeable future. Others won't be so lucky. Time can be a cancer patient's best friend but it can also become a worst enemy. Having to wait for that referral letter, or that next appointment, puts you in a state of limbo. It is an excruciating feeling and one that so many patients will feel until Nivolumab is approved.

Not long ago I faced a Saturday night TV-style gamble and I took it. In making its decision, NICE has made a similar move. Except that what it gambled were the lives of kidney cancer patients across the country. However, unlike all those unlucky TV contestants who gamble and get the wrong answer, NICE can still make things right. I hope it does.

The day I made that gamble was the day I was informed a new tumour in my adrenal gland had grown from nothing to 4cm in just four months. My professor described it as one of the fastest growths he had ever seen. Yet after just seven Nivolumab infusions - across three months with no side effects - that same tumour was 2x1.5cm. The kidney cancer I have is rarer and more aggressive than the standard type, which for me makes the result even more remarkable.

Not that I'm not out of the woods just yet. Tumours in my pelvis and spine have proved harder to reach but that only increases my belief in Nivolumab. Those bone nodules appeared just before my treatment started. So imagine if the drug had been around when I was diagnosed and had surgery in October 2014. Would I have been cured by now?

It's a question I'll never have an answer for, but I do know one thing. I believe in Nivolumab. It has given me a chance to hope and, for now, that will do.