By Jayne Warren - 10/10/2008
Every year almost 6,200 people in the UK learn that they have kidney cancer - more than are killed in road accidents - yet the condition rarely attracts much public attention or funding for research. Even worse, the proven drug treatment, Sutent, is not licenced by NICE, so sufferers are subject to the dreaded 'PCT' lottery. But James Whale, who was diagnosed with "a tumour the size of a football" in 2000 and subsequently founded the James Whale Fund for Kidney Cancer, is on a mission to change all this...
"Frankly, I'm really angry about NICE's refusal to licence Sutent. Really angry about it - especially as it has been thoroughly tested and significantly improves the lives of those with advanced kidney cancer. NICE claim they are 'protecting us', but in my view what they are doing is evil," said James in his famously rich, warm voice. Renowned for talking straight, he certainly doesn't mince his words about a subject that is so dear to his heart.
"The problem with kidney cancer is that there are very few symptoms. Feeling a bit tired, perhaps, not much appetite, night sweats - could be loads of things. I'd just got back from holiday and felt really great, but found I had blood in my urine. Didn't really bother me much. And despite my wife's pleas, I didn't bother to visit the doctor.
"Eventually I took a one-off test in a centre at Waterloo Station, which led to me seeing my own doctor for more tests, and ended up with my brilliant specialist surgeon, Tim O'Brien, informing me that I had the biggest tumour he'd ever seen," said James. "Thank God I hadn't cancelled my health insurance! It was a primary cancer, hadn't spread and looked like a mushroom pizza - but the biggest problem was how to get the thing out!"
James was booked in for surgery within a few days, taking the precaution of spending the weekend before in Brighton with his wife "getting paralytic". They both had to face the fact that it might be their last few days together.
Fortunately for them, for thousands of radio listeners and now kidney cancer sufferers, the operation went well. "They had to cut me in half to get it out, so I've got a scar from under my arm right down to my groin. Massive," said James blithely, who has remained cancer free, lives without one kidney - and takes no medication at all.
Unsurprisingly, the experience made him realise just how little help and advice there was for kidney cancer patients, to say nothing of the appalling availability of Sutent across the UK's PCTs. In true James Whale style, he decided to do something about it, and since then has become a very vocal advocate for sufferers. The James Whale Fund for Kidney Cancer supports research into the causes, prevention and treatment of the disease, and provides a support network offering advice, information and encouragement to those who’ve been diagnosed with kidney cancer and their carers.
It also acts as a campaigning arm to get Suten licenced by NICE. "NICE have got loads of money, loads, but they stand by and do nothing while lives are being lost. They claim that Suten is too expensive, but the real reason they are expensive is because the drug companies bear the costs of developing the drug and the licence" he said, his voice thick with years of genuine frustration.
"So why don't NICE grant a long licence, so the drug can be copied and then made available to everyone at a much lower cost? They're funded by the Government. But why don't the drug companies and the Government work together to sort licences out in the first place, rather than spending millions on NICE?
"I'm angry because the drugs ARE there, they ARE available, they CAN be prescribed - but they are being blocked. My worry is that with the inconsistent relationships between PCTs across the UK, all that will happen is GPs will find more sufferers of kidney cancer - and not be able to give them the drugs they need to either save or lengthen their lives.
"2008 must be the year that marks kidney cancer as the awful disease it is, and sees the PCTs, NICE and GPs working to the common goal of reducing the harm caused by the disease. I just hope that the new system being considered whereby patients can pay for their own drugs whilst being treated in an NHS setting will make a big difference. Its not ideal, but it will save lives - and that's what matters."
James is quite open about accepting money "from wherever he can" to help keep his Fund afloat and thereby help others. "I just keep asking for donations. I'm not proud. My message to anyone reading this is simple: I want people to realise that cancer is NOT a death sentence. If you catch it early enough, it's treatable. I HAD cancer - not any more."
So why the UK Curry Party from October 19th-25th?
"I like curry."
So what's going on? Restaurants and homes across the UK are signing up to hold a Curry Party over the week of 20th October in support of James' charity for Kidney Cancer. Launching at the British Curry Awards at The Grosvenor House Hotel on Sunday 19th October, the following week will be crammed with public and private curry events across the UK.
The idea is not just to raise funds but also awareness of the disease and potential treatments.
Parties can be planned at home or in public using recipes and party ideas available in ‘host party packs.' Funds are raised from donations made by friends and family who attend, and all money raised is paid directly into the Fund's bank account. Big public events are planned for London (20th), Manchester (21st) and Thursday 23rd is set aside for ‘at home’ or 'corporate curry party'. Friday 24th is the culmination of ‘Britain’s Biggest Curry Party' in London, with an evening hosted by James Whale and renowned TV chef Cyrus Todiwala MBE.