A neighbour approached Susan Howe the other day to inquire why she and her husband, Colin, were still running two cars. As personal questions go, this was intrusive, but Susan felt unable to invite the gentleman to mind his own business.

Over the past few weeks, this mild, quietly upwardly mobile couple have found themselves reluctantly catapulted into the public eye in their home town of Rugby. Their business is now everybody else’s too – because Colin has turned to public fundraising after being refused NHS access to a costly cancer drug that could prolong his life, and has become a local cause célèbre.

Colin, a softly spoken man who runs his own small business, had no reason to doubt that the NHS would deliver the necessary care after his cancer was diagnosed in 2005. And at first it did. Within a few weeks, a tumour the size of a rugby ball was removed from his left kidney. A year later a scan revealed that the cancer had recurred with equal ferocity and more radical surgery followed.

When the disease returned this January, a course of interferon alpha, the standard treatment for advanced kidney cancer, was prescribed. But this too failed. In April Colin was advised by his consultant to enjoy his remaining days while he still had the strength to do so.

Then a glimmer of hope was flashed before him, but almost instantly snuffed out. The consultant admitted that there was a new drug on the market, Sutent (sunitinib malate), which has been shown to more than double survival times in some patients, compared with interferon alpha. But with a monthly cycle costing £3,500, Warwickshire Primary Care Trust (PCT) has refused to fund it. Of eight patients who have applied for exceptional-case status only one has been successful.

Nevertheless, the consultant went through the motions, completing a detailed six-page questionnaire for submission to the Individual Cases Panel, while the Howes began appealing to friends, acquaintances and business associates to donate £5 a month to help to prolong Colin’s life. Last month his application for Sutent was turned down by the panel on the grounds that his circumstances were not sufficiently unusual for the PCT to bend its rules.

“What more do we need to do to prove that Colin is an exceptional case?” asks Susan, a feisty counterpoint to her reserved husband. “He’s had part of his pancreas, bowel and diaphragm removed and has no spleen. He’s in good health and his consultant thinks that he is likely to respond to Sutent. Everybody is exceptional to their family.”

Paying for the drug themselves is out of the question for the Howes. Susan earns £10,000 a year as a sales assistant at Dorothy Perkins and – with dismal timing – Colin had just set up a business writing wills when his illness was diagnosed. His company ticks over with the help of an agent, bringing in about £200 a week, but, despite paring down their spending, the Howes have been unable to avoid dipping into their savings.

“We are not people with money,” says Susan. “To find £3,500 a month out of taxed income we would need to be earning about £60,000 a year – and that is without any other living expenses. Our savings will be gone in six months if we spend them on Sutent and then we would not be able to manage from day to day.”

Their only other asset is their home, a neat three-bedroom semi in a modern estate on the outskirts of Rugby. The prospect of surrendering the roof over their heads appals Colin, who has slowly clawed his way up the property ladder. But his wife is clear about her priorities. “Colin’s biggest worry, even more than the illness, is what will happen to me when he’s not here. But I would give every penny I have to keep him alive. I come from a background where I lived, if not on the breadline, certainly on an extremely tight budget.

“If the only way I can keep Colin alive is to sell the house, I will go to live with my mother or my daughter. I know they would both take me in if I was destitute. And I know without a shadow of a doubt that Colin would do the same for me.”

The couple’s two-pronged campaign – to convince the PCT to fund Sutent and to raise money in case that project fails – consumes all their spare time and energy and has taken its toll on their private life. They have been married eight years and each has a grown-up daughter from a previous relationship. Some people facing a limited lifespan would have made different choices.

“Raising money has taken over my life and I feel that I should not have to be doing this right now,” Colin says. “The NHS has let me down when I need it most and I cannot just give up. This drug could give me two more years. Without it, I probably have a year at the most.”

Susan says: “I would love to take Colin on holiday and do special things with him, but everything other than getting his medication is on the back burner. Every time I go to buy anything, I feel I should be putting the money into Colin’s fund.”

When Tony Wilson, the Manchester music promoter who died in August, was denied Sutent, wealthy showbusiness friends stumped up the cash. Friends and family of the Howes have had to be more resourceful. The first big push – a sponsored walk, a charity show and a garden party – has yielded £5,000 in six weeks. While this is a large sum, it is anybody’s guess whether the same level of support can be sustained over whatever time Colin has left.

Next month, two friends are staging a version of The Full Monty in a village hall. Such is the local commitment to the couple’s campaign – or perhaps the enthusiasm for the treat in store – that tickets have reputedly sold out before going on public sale.

“Our friends have been amazing,” says Susan. “Two of them organised a garden party that raised £1,000 in an afternoon – that’s more than I earn in a month. A local business will write out a cheque for £100 and apologise for not giving more: but that’s the cost of one day’s medication for Colin and it all adds up.

“But even though they have all asked what they can do for us and made it extremely easy for us, it feels strange going to them cap in hand. When we heard that Colin’s case had been turned down, I felt really demoralised at the thought of continuing the fundraising. It is relentless. And people have their own lives to lead – Christmas is coming up and they are entitled to a breathing space.”

Colin is a private man who would like to take his medication and focus on enjoying his remaining time. “I feel I have become a celebrity for all the wrong reasons. I am on the local radio, in the paper, on posters. It is an odd position to be in – appealing to strangers for money so I can live, and having them sharing the ins and outs of our lives. But how can I just wave goodbye to a year of extra life without a struggle? I am not prepared to give up and just wait.

“I try not to dwell on my illness but it’s there at the back of my mind all the time. I have dark moments when I am on my own. The slightest ache or pain and I think ‘this is it’. Last week I could not get out of bed, although this week I feel better. But time is ticking away. I have had no treatment since April and I wonder how much longer I can wait.”

Susan admits that her anger at their situation has sometimes turned corrosive.

She finds herself resenting NHS money being spent on people from other countries who have not made national insurance contributions, for example the estimated £55 million a year that goes on translators. “I am not like that normally. I feel bitter that Colin has contributed to the NHS all his life without asking for anything back and now he is being forced to pay privately. It is not as if he will be taking up a hospital bed in old age: whatever happens, his life expectancy is not very long.”

In defence of its stance, Warwickshire PCT says that it has “responsibility for commissioning services across a population of 900,000. This creates significant commissioning challenges and the PCT has a duty for ensuring all its resident population are in receipt of health-care services.”

Understandably, the Howes have no truck with the argument that if Colin receives Sutent for even a year, some other worthy patients will have to go without treatment. “We are one of the richest countries in the world,” says Colin. “People in France, Germany and America, even Poland and Mexico can get this drug. I believe the money is there in the NHS – it is being spent on the wrong things.”

There is no denying that Sutent and other high-cost cancer drugs do not offer a cure. They buy time – sometimes months and at best a few years – for very sick people. “An average survival time of less than a year does not sound very long, but patients are effectively dying when they go on Sutent and that time is a lot to them,” says Dr Peter Harper, consultant oncologist at Guy’s and St Thomas’ Hospital in London.

Susan has not the slightest doubt that any time bought for Colin by Sutent at any cost is well worth having. “How can you put a price on the life of somebody you love?” she asks. “I waited 17 years for Colin after my first marriage failed. When I was helping him to decorate this house soon after we met, I wrote ‘I’m going to marry this man’ on the wall of the downstairs cloakroom. We found it recently when we were redecorating.”

You know that this is somebody who will not surrender her man to cancer without a fight.

— To donate to the Colin Howe Cancer Care Appeal go to: colinhowe.org

‘The cost-effectiveness of these drugs is marginal’

Sutent is just one of a raft of sophisticated and successful new high-cost cancer drugs that are currently sending cash-strapped local primary care trusts (PCTs) into a tailspin. Some PCTs have decided to fund it, while many have not, leading to renewed cries of “postcode lottery” from patients and their families.

Of the 3,100 patients a year who discover that they have advanced kidney cancer (in one third of patients the disease has already spread at the time of first diagnosis) fewer than 200 have succeeded in getting funding for Sutent from their PCT since it was licensed last year. This is despite clinical trial results indicating that 40 per cent of patients with advanced kidney cancer will see their tumours shrink by 50 per cent after taking it – compared with only 10 per cent on interferon alpha.

The UK has a thorough and transparent system for deciding drug priorities – the National Institute for Health and Clinical Excellence (NICE). But each NICE guidance takes between 12 and 18 months to appear and the guidance on Sutent is not expected until 2009.

The cost of cancer care is spiralling out of control, according to Karol Sikora, professor of cancer medicine and medical director of CancerPartnersUK, which provides cancer services to the NHS and private sector. “I estimate that within five years, we will see a 200 per cent increase over today’s costs in managing cancer patients with best-available therapy,” he says.

The price of the drugs themselves, which is constantly rising as more sophisticated and targeted products emerge, is only one factor. Increasing life expectancy means that more people are developing cancer and improved medication means they are living with it for longer.

“Sutent is one of a bunch of therapies whose cost-effectiveness is pretty marginal,” counters Alan Maynard, professor of health economics at the University of York. “People seem to think the NHS must do something for them but to do so may remove care from people who would benefit more. The crucial issue is that decision-making must be consistent and transparent.”

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