Because I'm worth it

By Robert Mayer

Robert Mayer was disgusted by the rules

I'm listening to You and Yours on Radio 4 like you do when you have too much time on your hands, and inadequate concentration span for anything purposeful.

The item is about the cost of new cancer drugs and whether or not the NHS can afford it "at a price that we the taxpayer can afford" as the Cancer Tsar Professor Mike Richards says.

I was diagnosed with metastatic pancreatic adenocarcinoma four months ago and I have been thinking a lot recently about how much I cost the NHS.

I think what started it was when Patricia Hewitt [then Health Secretary] said the NHS could not afford any pay rise this year for GPs.

I admit to being slightly irked, overpaid as I seem to be.

I realised, of course, that the national economic situation must be serious if even Gordon Brown now wants a refund on the GP contract to keep the English economy afloat.

Am I too pricey?

So I have started to think about my own costs - now that I am a patient as well as an expensive GP - whether, perhaps I might not be, how shall we say... a little too pricey now?

Of course cancer doesn't come cheaply.

I could become a completely private patient but apparently I am not allowed to just pay for the drugs

If you look at my medical record ( which you will probably be able to do sometime soon if the NHS IT project doesn't get its security act together) you will see that very little has been spent on me up until I got cancer.

A few prescriptions, tonsils and adenoids when I was seven - probably unnecessary by today's standards - and one haemorrhoid injected.

A few hundred pounds all in.

People generally still seem to believe that they pay for the NHS with their "stamp" or National Insurance contributions, although this is nonsense.

Funnily enough they hold onto this view even if their only connection with Lloyd George was GCSE history.

Somehow the government like us to maintain this fantasy, but of course the boring reality is that it comes out of general taxation and there is no NHS bank.

How much do I cost?

With an eye to the future, and because we may not be too far away from this scenario, I have done a few back of the envelope calculations:

Investigations:

Colonoscopy: �1,000

Gastroscopy: �600

Scans: �3,000

CT Biopsy (two): �1,000

Hospital Admission with fever and pulmonary embolism: �2,000

Outpatient appointments (weekly): �2,000 (and running)

Subtotal: �9,300

Ongoing drug costs:

Tarceva: �1,324 a month

Avastin: �300 a month

Gemcitabine: �450 month

Capecitabine: �300 month

Tinziparin (to stop blood clots): � 300 month

Granisetron (for nausea): �200 month

Ongoing:

Medical monitoring and scans

One medical meeting a week

Medical Day Unit once a week

CT and MRI every two months

Weekly blood tests

Total = A lot

Without the medical costs ongoing drug costs alone are �2,874 a month or �34,488 a year.

So, without too much exaggeration, I am starting to cost the NHS upwards of �40 000 per year.

Now is this is expensive?

What dear taxpayer (as Professor Richards asks on You and Yours) do you get for �40,000?

Well I may get six to 12 months (or longer) of high quality life.

And my family may get me around as a dad and husband.

My friends keep me as a friend too (how much is this worth?)

NICE unofficially say �20,000-�25,000 per QUALY (quality adjusted life year a measure of useful survival) is the cut off.

At first sight, I am too expensive.

Helping others

If I go back to work during this time then, of course, the UK economy really starts to see some return on its investment.

I will see patients again and make some of them better.

The moral conundrum so defeated me that I opted for the "opt out" of the clinical trial

That must be worth something - but then I forget they have to pay me at the moment if I'm working or not, though of course that would stop eventually.

Paying income tax and national insurance would soon make a dent in the size of my "loan." I would pay it off in a year.

But in reality there is no loan. If there was most people would be bankrupt when they got ill.

That is why we have an NHS.

I am just exploring the real costs that we don't often think about. And here it gets interesting.

Ineffective treatment

The "standard" and depressingly ineffective treatment for advanced pancreatic cancer is the single agent Gemcitabine.

NICE approved this over five years ago and has not returned to the subject since.

There is a small amount of evidence, but so far only at the "presented in symposia" level, and not formally peer reviewed, which demonstrates a modest but useful survival advantage with the addition of either Capecitabine (Oral 5FU) or Tarceva (very expensive).

In my initial conversations with my local oncologist, I was informed that my primary care trust would not fund Capecitabine (GEMCAP combination) but we could apply for special consideration.

There was no way they would fund Tarceva.

I wondered what form the appeal might take.

It would be to a committee of the Primary Care Trust comprising a public health doctor, a non executive, a few managers, most of whom I probably know personally. (Is this good or bad for my chances?)

The amount of data is restricted to what I already know.

Sex is fine for co-payment, delaying death is not

So they will be left having to decide "is he worth it?" For six or 12 months? Well, is he?

I offered to pay to save them the embarrassment.

Actually I offered to pay for the Capecitabine.

The bill for Tarceva made even me wonder if I was worth it.

I could get a swanky motorbike, large plasma screen, and holiday, drive around very fast then retire gracefully to bed - and my family would have some change at the end.

Anyway, this is not an option in England.

I could become a completely private patient but apparently I am not allowed to just pay for the drugs - it is unseemly to the principals of the NHS.

This is of course bullshit.

Clinical trial

As the government knows all too well, an embarrassed Frank Dobson in the early years of the New Labour government had to announce that by and large Viagra could only be made available to NHS patients if they paid for it.

So here we have it, sex is fine for co-payment, delaying death is not. And which principal was this?

The moral conundrum so defeated me that I opted for the "opt out" of the clinical trial.

Now I am getting more drugs than either I or the NHS could afford, all courtesy of Roche pharmaceuticals.

Of course they hope eventually to expand their market for Tarceva and Avastin in the way that they have very successfully for Herceptin (Should I have bought shares?)

All they await is a little patient pressure and an announcement from Mrs Hewitt to short circuit the NICE process.

Meanwhile, I continue on the trial, happy in the knowledge that at least to Roche, at least for this year, I'm worth it.

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