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A nice inquisition

Tough questions are being asked about the value NICE is placing on a human life

Have you even been in a difficult situation? I mean really tricky. I don't mean have you ever regaled the office with your opinion of the boss - only to find she was standing in the doorway, behind you? And I'm not thinking of you complaining openly about the big bloke with the BO, only to discover it was her husband you're insulting?

I am not even considering the time, at the Christmas party, when you got so drunk you can't remember sitting bare-bottomed on the Xerox, gleefully making copies for worldwide distribution, only to find someone has flashed a phone pic of the moment across the Vodafone network.

No, I mean a really difficult situation. Try this oneÖ How about sitting down with someone and telling them you don't think the NHS should spend the money needed to save their life.

Tough? Yes... How about doing it on the television in front of three million people? Difficult enough?

Think about looking at the lens of a camera and into the eyes of a young, intelligent, family man and saying: ``Sorry, you're going to die and I think it is the right decision.

Fancy having a go at that? Well, I've just done it, a couple of days ago, on BBC News 24, broadcasting to the UK, Europe and the world.Sorry mate, you're going to die. I think that is a difficult situation.

The National Institute for Health and Clinical Excellence (NICE) had pronounced on a couple of drugs for end-stage bowel cancer, and there I was on the telly, doing my sage guru bit, pronouncing on its pronouncement.

These drugs are as clever as hell. I have no idea how they work. But they work.

There is no question that these little babies do their stuff and they extend the life of a bowel cancer patient.

Got that? Extend the life. We are not talking cure, or heal, or restore to health. We are talking about extending life. But by how much? Years? No, sorry. Just a few months. Maybe three; five at the outside.

Holding on
If you had terminal bowel cancer, would you want to live for another five months? Of course you would. If you were otherwise functional, had a family, could get around and do stuff, you'd want to live an extra five months.

Five months should take you through to Christmas, to see the kids open their presents for the last time. Enjoy a turkey sandwich and shed a tear listening to the Salvation Army Band playing O Little Town of Bethlehem.

Five months to get your affairs sorted. Five months to visit a place, spend some money, appreciate an artwork, do something reckless, love your loved ones, be happy, sad, regretful and optimistic.

You could say the unsayable, do the undoable, love someone you had dared not and make peace.

In five months, you could do a lot. In five months, you could prepare friends and family for the worst, look for the best in them and focus their attention on the future.

It might be the most rewarding five months of your life. Condensed and compressed, squashed and packed solid. Someone who has no regard for the future can take care of the past and be bold enough to shape the horizons for those who will follow in their footsteps.

However, NICE has said no to all that and I was doing the rounds of the TV and radio stations, explaining why it was right. Right to deny a family of what might be the most fabulous five months they would ever experience. Five months: 3,500 hours which would evaporate. Every second would count. The harshest sound they would come to know would be 'tick-tock'.

NICE said no. It said that the drugs were not good value for money. It was right. Damn it, it was.

NICE uses a formula to decide upon a drug's contribution to the quality of life and its time span. It is cruel, crude and basic, but it is the most sophisticated solution it has.

I was happy to support NICE and very unhappy to look a family man in the eyes and tell him there would be no reprieve from his death sentence.

The cost of these drugs is in the region of maybe £50,000-£60,000. A course of treatment that would end in death. For a health service sacking staff, struggling to balance its books and meet targets, this does not represent good value for money. It makes economic sense for the NHS to let this man die and - in the cold world of accountancy - the quicker the better.

Drugs are too expensive, they take too long to research and bring to market. After development, pharma companies have only a few years to sell their products, recoup their investments and make a profit. Is it any wonder that pharma's drugs are more expensive than Chanel No 5?

The NHS Cancer Plan, dreamed up in 2000, is about as current as a ticket for a trip on Concorde. Back at the turn of the millennium, no one envisaged that this class of drug would emerge, never thought about providing complex cancer services in a community setting, and was floated on a tide of new money washing into the NHS. No one envisaged that NHS budgets would end-up high and dry.

If I am not to make a career of going on the telly, telling people they are going to die, we have to do something. The solution is in the hands of big pharma. They must lobby for a change in patent law. We need a development patent for 10 years and a marketing patent for another 10. That would end the frenetic last minute rush to recoup investment and give more time to achieve a lower return with an affordable price tag, over a longer period.

They've got to stop pleasing shareholders with innovative new drugs that don't do anything really useful, other than give NHS managers and people like me sleepless nights and a burden of guilt so heavy I can hardly stand.

The Author
Roy Lilley is a healthcare author and broadcaster

2nd September 2008

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