Buying time - Should NHS patients be allowed to pay for life-prolonging 'wonderdrugs'?

DIANE Wishart has a rare form of breast cancer and has told her young daughters, as best she can, that it's incurable. Precious time with Eve, nine and Rose, six, is her first priority.

Diane, 39, is undergoing chemotherapy, currently her only NHS treatment option. But from internet forums devoted to cancer she knows other patients from overseas who are taking new "wonderdrugs" that can prolong life. One is Avastin, which costs £60,000 a year. It won't cure the disease. It might, however, give her a few extra months with her family when her chemotherapy stops working.

But there is a problem. The NHS won't pay for Diane to have Avastin because it has not yet been approved by the Scottish Medicines Consortium, the body that recommends or rejects new drugs for the NHS. So what should Diane do? Should she try to find the cash herself? If she does, current NHS rules would force her to pay not only for this drug, but also for all the other cancer treatment she needs, including scans, nursing and other drugs. So this course of action would prove vastly more expensive than the cost of the drug itself.

Is this fair? Shouldn't she be allowed to pay for Avastin and get the rest of her cancer care free on the NHS? The issue last week became a political, moral and ideological football after Nicola Sturgeon, the SNP Health Secretary, ordered a review of the current NHS arrangements. The debate goes to the heart of values held dear in the NHS – the right to equal treatment regardless of wealth. Should this honourable NHS principle stop children having their mother for a little while longer?

Diane, who lives in Dunfermline, Fife, is currently working with friends, family and colleagues to raise the money to have her cancer treated privately. The Diane Wishart Appeal has so far raised £40,000 but she knows it has some way to go. "My daughters know I have cancer which is not going away, but that as long as the medicine works it will be fine," she says. "My type of cancer is rare, which limits the choice of treatment. But I will buy Avastin when the time comes. I don't see the problem with paying extra for private treatment. I just did it at my NHS dentist when I paid privately for a white filling alongside my NHS check up. But no one should be in this position. The NHS should not be failing you like that. I have worked since I was 16 and paid my taxes all my life. It's not fair on my girls."

Who wouldn't be sympathetic to Diane's plight? Jan Rutter, who runs the internet group Cancer Buddies Network, says patients should be able to opt in and out of the NHS: "We are not talking about the rich and famous here. If someone wants to spend their money that way and can scrape the money together, they should definitely have that option. If they are offering to do it, what's wrong with that?"

For others, though, these sentiments are cracks in the very foundations of the NHS. They warn that a "two-tier system" is deeply wrong. Major charities are also wary of "co-payments", where a patient is treated privately while getting care on the NHS. Richard Davidson, Cancer Research UK's director of policy and public affairs, says: "It can be extremely distressing for a patient to learn that a treatment which could benefit their condition is not available on the NHS, but we believe that co-payments for cancer drugs could perpetuate inequalities and present more problems than they resolve.

"We believe that solutions to many of the difficulties surrounding access to cancer drugs could be reached through making changes to the current system. Patients and the public deserve a clearer explanation of the process for the introduction of new drugs and clarity and transparency around the decision-making process at all levels is required.

"In addition, we believe pharmaceutical companies have a role to play in working with Government to develop pricing arrangements according to effectiveness."

In particular, experts believe that the system for judging whether a drug is cost effective could be more flexible, to take into account of quality of life, or whether it would improve a patient's chances of continuing to work or living without a carer. Factors such as age and dependent children are not thought to be appropriate as these are considered "social factors".

The complexity of this emotive debate became clear last week when it reached the Scottish Parliament, prompted by a petition brought by cancer victim Michael Gray. He died in April, but managed to extend his life by six months, enjoying lunches with friends and going to work, by taking a new drug called cetuximab, which he only obtained by paying for his whole cancer treatment privately, in accordance with the rules. His specialist believed Michael would benefit from cetuximab – but he could not get it in NHS Grampian.

Michael's family and friends paid £3,200 a fortnight to help him. Just £720 went on the cetuximab. The rest was what they had to pay for his private health care in order to get the drug. Before he died, the 53-year-old from Buckie appealed to the petitions committee to urge the Scottish Government to ensure equal access to cancer drugs across health boards, prompting the Government review. Sturgeon suggested that in some cases "concurrent care" – private healthcare treatment alongside NHS treatment – "may well be possible".

Yet Michael's partner, Tina McGeever, does not believe patients should be allowed to "top up" their NHS cancer treatment with private drug prescriptions. They paid for everything because Michael would have died otherwise. But she would not like to see a situation where a patient in an NHS ward was watching someone in the next bed benefiting from a drug that they could not afford themselves. "It would create another tier in the NHS and would still create a problem for people who can't afford to pay," she said. "This is about equity of drugs across Scotland."

It is too early to say what the outcome of the review will be. But in a country with some of the poorest cancer survival rates in Europe it is certain to reveal deep unhappiness about the current system, which forces some patients to find or raise six-figure sums for treatment, to sell their homes, cash in investments and ask friends or family to contribute.

Sturgeon last week acknowledged that the issue was difficult and controversial, but pledged that new guidance would seek to combine the rights of the individual with robust clinical governance and the founding NHS principle that treatment should be based on clinical need, not on the ability to pay. She acknowledged that co-payment might become an issue, but stressed it would be "the exception rather than the norm".

She added: "Patients do have the right to access care from the private sector. The question then is to what extent such privately provided care can be concurrent with care provided on the NHS. Essentially this has to be considered on a case-by-case basis. In situations where the treatment to be provided privately is so interwoven with NHS treatment that there can be no clear delineation between the two, concurrent treatment would create a lack of clarity with implications for patient safety, clinical accountability and probity. In such circumstances, concurrent treatment would not be appropriate.

"However, where different elements of care were able to be separated safely, concurrent care may well be possible."

Whatever solution her experts suggest, what is abundantly clear is that one is needed urgently. A recent Eurocare report shows that cancer survival in the UK is still below the European average and is similar to some eastern European countries.

According to the Association of the British Pharmaceutical Industry (ABPI), the trade organisation for drug manufacturers, an extra investment of £403m a year is needed for the UK to achieve the existing average per capita expenditure on cancer medicines in comparable European countries.

Its research shows that UK per capita spending on cancer medicine currently stands at just 60% of the European average. The ABPI cites research by the Karolinska Institute, in Stockholm, one of Europe's largest medical universities, which found that 52% of cancer patients in France, Spain, Germany and Italy were treated with cancer medicines launched after 1985, but just 40% of patients in the UK had access to these newer treatments.

But should we believe the hype of the pharmaceutical companies about their wonderdrugs? Ken Paterson, chair of the Scottish Medicines Consortium, says no. "Pharmaceutical companies perhaps overemphasise the benefits of some treatments in some of their publicity materials. Their material will be factually correct but it may emphasise the positives and minimise the negatives," he says. "People believe they are lifesaving drugs but in fact they are often of very modest benefit."

This warning angers patients who say that they have every right to pin hopes on a new drug that might just work, no matter what the odds, particularly if a doctor has suggested it. Margaret Watt, chairwoman of the Scotland Patients' Association says of Paterson: "It's not him at the end of a tube. If a patient believes there is a drug out there that might work for them it gives them the positivity to fight on."

That's what Peter Philips has done. When he was diagnosed with prostate cancer, doctors told him he had months to live. That was 18 years ago. He has fought the cancer bravely and carried on working and campaigning for other sufferers. Philips, 61, from Edinburgh, now wants a drug called Zometa which can help with the side effects of therapy. The cancer has spread to his bones and he takes hormones to control it. But this in turn has caused his bones to turn brittle. Zometa won't cure him but it would ease the pain. One of his fellow sufferers in the Highlands was given it by his doctor. But at £290 a month NHS Lothian won't fund it. It's not approved by the Scottish Medicines Consortium so it's up to individual health boards to decide whether to pay for it.

"It's obvious the NHS is inadequate to deal with this because there are so many prostate cancer sufferers," Philips says. "The Scottish Government should give equal rights to all men with prostate cancer in Scotland to receive a drug that in most cases will improve quality of life."

As for Diane Wishart, she hopes that Avastin, or something similar, will become available on the NHS by the time she needs it. Its manufacturer, Roche, who have already had a number of applications for the drug rejected by the Scottish Medicines Consortium, say they are working on it. If not she will go on a trial for another new drug and continue to save for her treatment, to prolong the time she has with her girls. Whether her bill will run into thousands, at an NHS hospital, or tens of thousands at a private facility, is, for now, anyone's guess.