While many hospitals delay putting into action the staggering results of the STAMPEDE trials, more than 500 men with advanced prostate cancer a month are missing the chance to extend their lives by up to two years. We talked to one of them, Nigel, about the terrible toll the delays are taking on him and his family, and call on hospitals to end this cruel treatment lottery.
Nigel, 61, works in the ticket office of his local train station. He can choose to either stand or sit while he does his job, but has recently found that he’s spending far more time sitting down. This is because of the pain in his back from his prostate cancer, which had already spread to the base of his spine and to both his hips by the time he first went to the doctor in May 2015.
At his first appointment with the oncologist, Nigel asked whether he could have chemotherapy upfront. He’d read about the STAMPEDE trial in the papers and knew that, because his cancer had already spread outside his prostate, having docetaxel chemotherapy alongside hormone therapy could mean he’d live up to 22 months longer than he would otherwise. As a still-working and otherwise fit 61-year-old, the prospect of an additional two years of life was a strong draw.
The doctor told him that although there was evidence that upfront chemotherapy could be beneficial, the results were very newly released and hadn’t yet been fully considered by the hospital. Luckily, or so Nigel thought, when he returned for his next appointment, things had changed. The oncology team had discussed the evidence and decided that upfront chemotherapy could be administered if patients were keen, fit and had metastatic disease. Nigel fitted the bill on all three counts.
They explained that he’d have six cycles of chemotherapy over three weeks, and it would be no problem at all to start treatment after he got back from visiting his son and grandchildren in Canada. But by the time Nigel returned from his holiday, the goal posts had shifted.
While he was away, the doctors had revisited the criteria that would make patients eligible for this treatment. They’d taken into account the fact that some hospitals – for example in the Midlands – weren’t offering this treatment option at all, because NHS England would not approve or fund its routine use before the trial results had been published. Other hospitals, for example in Cardiff and Edinburgh, were offering chemotherapy upfront to all patients with cancer that had spread outside the prostate.
Nigel’s hospital decided to fall somewhere in the middle. They would only offer chemotherapy upfront to patients with ‘high burden’ disease. They would define ‘high burden’ the same way as the team running the CHAARTED trial (the precursor to STAMPEDE); that is, the cancer had spread to four or more sites outside the prostate, or to a soft-tissue organ (like the liver or lung).
It felt as though I’d had the rug pulled right out from under me .... that tiny bit of control was taken away again.
Nigel only has three ‘hotspots’ in his bones. He was no longer considered sick enough to be given a treatment that could prolong his life for up to two years.
He was devastated.
"It felt as though I’d had the rug pulled right out from under me," he says. "Ever since my diagnosis, I felt like I was losing control of my life – and my body. I’d only just started to claw some of that sense of control back again from choosing what I thought – and still feel – would be the best treatment option for me; one that could give me an extra two years with my wife and family. And then even that tiny bit of control was taken away again.
"It sounds like a small thing, but I’d already told work what was going on and arranged to have someone to cover my shifts while I was being treated. Now I’ve got to go back and tell them that it’s all up in the air again.
I was diagnosed in May. It’s September now. I’m already moving further into the three years I was told I could expect to live with this disease. The clock is well and truly ticking.”
Nigel isn’t the only man the clock is ticking for. About 6,300 are diagnosed with advanced prostate cancer in England every year. That’s over 525 men per month, 122 men per week or 17 men per day whose lives could possibly be prolonged by nearly two years if they were eligible for upfront chemotherapy. And for every month that hospitals take to decide whether to make this treatment available, over 525 men might be missing that chance.
Nigel’s story makes it clear that the process for making existing drugs available in a new way is confusing and is decided on differently by different hospitals, without any steer from NHS England or other UK Health Bodies, who wait for promising trial results to be published before taking action. Access to drugs shouldn’t depend on where you live. These processes should be consistent across the UK, so that all men who should benefit from these treatments can.
For every month that hospitals take to decide whether to make this treatment available, 530 men risk missing that chance.
We’re not saying that they shouldn’t wait for trial results to be published. This is critical to making sure the results are right and the treatment safe and effective.
But what we do need is for Health Bodies across the UK to start planning in advance (as soon as promising results are announced), so that positive trial results can be turned into routine clinical use as quickly as possible after the results are published. And in the meantime, they should be sending a clear message to hospitals and patients, so that everyone knows what’s happening. Men like Nigel shouldn’t be left hanging, or have their hopes raised, only to be dashed again shortly afterwards.
It seems simple doesn’t it? We think so too and that’s why we have asked members of the Government’s Accelerated Access Review, which was set up earlier this year to look at how to speed up access to innovative drugs, devices and diagnostics for NHS patients, to make the STAMPEDE trial the trail-blazer for NHS forward planning. And we’ll keep asking them until they do. And if they don’t, we’ll be asking every single person in our Men United army to help us get this treatment available to every man that needs it.
This week, the Government’s Accelerated Access Review – which aims to speed up access to innovative drugs, devices and diagnostics for NHS patients – closed its first round of consultation. Dr Iain Frame, our Director of Research, explains how the STAMPEDE trial shows why accelerated access matters and how he thinks it can be achieved.