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Member of British NHS comes to US for Trial!!

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Last week I returned home from the United States after taking part in a trial to treat my supposedly incurable cancer. I am an NHS consultant and I happened across the trial in the course of researching my condition. Its results look promising — I am feeling surprisingly well for someone diagnosed with an aggressive form of lung cancer 17 months ago — but the chances are that if you were a cancer patient, your NHS doctor would not even have told you such a trial existed.

Such experiments are out of bounds to patients in our NHS, though anyone is eligible to try the new drug treatment in Philadelphia, fully funded by the US government to the tune of £20,000 per person. All that is required is the cost of travel and board on a few visits. A number of international patients have taken advantage of the offer, but I am the first one from the UK. Why?

Mesothelioma is a form of cancer caused by exposure to asbestos — in my case, most probably at the London hospital where I spent six years training. The standard prognosis looks dire: the median survival is 12 months. Long survivors are a rarity, but hopefully increasingly more common.

Trials of new drugs or therapies might make all the difference to people with a cancer that is difficult to treat. So why shouldn’t patients in the NHS be able to try such innovative trials in the US — or elsewhere — if they wish? Is it really the cost? We happily expend health resources on treatments and operations that do not work or have minimal effect. My travel expenses amounted to far less than an operation in the NHS, where it costs £450 a day just to keep a patient in hospital. I suppose the argument is that it would open the floodgates. Hardly: there are only about 1,500 new mesothelioma patients a year, some of whom would not be fit enough to travel to the US. Many cannot afford to do so, particularly the dock workers and laggers who are most commonly affected.

In any case, it is not so much a question of cost as a willingness to embrace new ideas. There is a lot of talk about “choice” on the NHS, but my experience as a patient has taught me that the choice you get is a choice of what you are offered — and that is usually an operation or a drug treatment favoured by the consultant you happen to be referred to. Furthermore, if a doctor knows of a better treatment but it is available only in the wicked private sector outside the health service, he or she is not supposed to tell you about it, on pain of disciplinary action.

This statist, centralising mindset finds an echo in the government’s denial of NHS treatment to patients who pay privately for additional drugs, many of whose stories have been told in recent months in this newspaper. This draconian ban on so-called “co-payments” — now apparently to be reviewed — makes my blood boil. Once again, patients have choice but cannot actually choose anything other than what they are offered. Last week the British Medical Association supported the right of patients to “top up” their NHS treatments from their own pockets, but drew the line at trying to force government implementation.

My own world was turned upside down when I was diagnosed, at the age of 48. It was an appalling shock, but I remained optimistic about my chances. Soon afterwards, I wrote an article in these pages, expressing the hope that I would be a “lucky b*stard” in the face of statistics suggesting that within 12 months I would be dead.

By the end of my first tranche of reading into mesothelioma, I felt like looking for the web link that would allow me for $39.99 (£20, a special offer) to have a 9mm Browning delivered to my door. But working in a profession where there is a chance that during any working day someone might vomit or bleed on you, you have to have a sense of humour. I was lucky in that I had wonderful support from my family, particularly my wife Juliet. I tolerated chemotherapy reasonably well, although I felt sick, exhausted and depressed for most of last year.

But in the space of a week I was offered three opinions from thoracic surgeons on the prospects of radical surgery. One suggested that, other things being equal, a major operation had a 5% chance of “curing” me. The second disagreed thoroughly with this view and the third said the chances were not great.

This is understandable when the facts are in short supply: for patients like me there may simply not be any hard evidence. Doctors should discuss what is available and best for the patient, but some are tempted, subconsciously perhaps, to dress up opinion as fact. How many surgeons will tell you if a number of their peers don’t agree with them? That is not to say they don’t have your best interests at heart. It is just that the solution is preordained, the script written.

It means that if you are referred to surgeon A by your GP, you will have a major, potentially very serious operation to remove half the contents of your chest. Whereas, if referred to surgeon C, you might only be offered such an operation. When evidence is poor, what you get depends upon whom you see. So how can you make an informed decision in the absence of information? If your doctors do not know what is best, how can they advise? I found my own way of resolving the issue. In a pub near the Royal Marsden hospital, looking into my wife’s eyes, I tossed a coin to decide whether to have radical surgery or not. Surgery lost. Over a year down the track, I think it was a correct decision, as do my medical friends.

Looking at what “treatments” were available, I came across a group led by Dr Dan Sterman at the University of Pennsylvania working on an experimental method of treating mesothelioma. Using genetically modified viruses, they make the body attack the malignant cells. It is unproven and in the early stages of clinical trials, but they have had some success in small numbers. The science behind it is appealing, it does not involve killing healthy cells as with conventional chemotherapy, and it does not involve surgery so radical that the surgical team cannot decide which bit of the patient to send to the recovery ward and which to the pathology lab.

While concrete evidence for its effectiveness is lacking, there is also minimal evidence for surgery altering the outcome except in a small proportion of cases, and not very great evidence for chemotherapy.

So I went out on a limb, although one leading UK oncologist called the US treatment “bollocks”, a standard response — if we don’t do a procedure here, it doesn’t work. But in the absence of strong evidence for anything else, it made sense to me. My private health insurers were helpful but they cannot fund treatment in the US. They would of course fund radical surgery in the UK, even though it could set them back tens of thousands of pounds.

Last April I flew to Philadelphia for three weeks, had a tube inserted into my chest and spent 10 days in hospital as doctors stimulated an internal immune response. I made short return trips in May and last weekend. The American doctors are quite pleased, but it is early days: they say it takes between six and 12 months to demonstrate the treatment’s full effects. Now I have to hold my breath and keep my nerve.

Being relatively affluent, I was able to pay for the flights, and luckily my wife and I stayed with a friend in Philadelphia. Others are not so fortunate. Which is why I am looking for support to establish a fund to help people with mesothelioma to travel to Philadelphia. It’s what the NHS or private insurers should be doing — but they won’t.

I don’t think the NHS will penalise me, although I would love to see it try. I will probably have to return for NHS treatment at some point, even though I have been lucky: my disease is now stable and may be improving. Strictly speaking, my procedure was not “treatment” but a clinical trial and, being free, it did not rank as a co-payment.

It was relatively easy for me to exercise my right to choice by stepping outside the treatments offered by my oncologist and risking her disapproval. Having been a consultant in the NHS for 14 years, I knew the system and the people. Such action is not an option that exists for many others with my condition. Even so, if the Philadelphia story has a happy ending, I hope it is not just for me.

Dr Andrew Lawson is a consultant in pain medicine at the Royal Berkshire hospital and honorary senior lecturer in medical ethics at Imperial College, London.


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