At the edge of the NHS (1)

Earlier this week I asked for information about a drug called Sorafenib (Nexavar®).

There was a reason for this: my brother has been diagnosed with primary liver cancer. This is something that worries the whole family - out of my 14 closest maternal relatives 5 have now had some form of liver cancer.

Sorafenib (Nexavar®) is a newly developed drug that works by starving the tumours of blood, slows their growth thus relieving symptoms and prolonging life. This is, to say the least an agonising time.

The obvious next step is for the consultant to sign a prescription so that we can nip down to the pharmacy and start a course of treatment straight away.

Sometimes I read stories of parents in third world countries who have a sick child needing antibiotics. The simple drug that we take for granted may cost someone in a country like Upper Volta the equivalent of a year's salary.

We read the story and give thanks that in Britain we have the National Health Service. Thank goodness we think, nothing could happen like that here.

Not true. Suddenly my brother has reached the limits of NHS care: Sorafenib (Nexavar®) is not available as an NHS drug.

It is currently being evaluated by the National Institute for Clinical Excellence the NHS body responsible for vetting drugs that can be supplied free on the NHS. In the meantime local primary care trusts, theoretically the "commissioners" of health services, can give the go ahead for it to be supplied locally - the so called "post code lottery".

Apparently the PCT where my brother lives take a hard line, and normally don't make exceptions, so there is a real chance the drug will not be supplied free.

Naturally we've looked into having the drug supplied privately. Unfortunately that will set us back £36,000 over a twelve month period, not chicken feed.

Now I'm fairly certain that there are many people with conditions who do have treatment paid for by the NHS that is in excess of £36,000. I don't begrudge this, that is what the NHS is for, its socialism at work. However, just to make sure I know the full facts I have asked the PCT concerned for a breakdown by condition, cost and the standard measures of equality for people in their area receiving treatment in excess of £10,000 per year.

We have put in a request for an "individual case review" (in some areas known as an "exceptional case review"). The consultant has to prove an exceptional case for treatment. Last week was full of phone calls and emails trying to find out what the procedure was.

It wasn't helped when a well meaning but naive "PALS officer" rang to say that they couldn't answer our query last Tuesday "because the person who deals with this is on leave until Monday". Not the sort of thing you want to hear in these circumstances.

I got the distinct impression that persistence is important. I did ask that my original email was forwarded to the Chief Executive and Chair of the PCT concerned. I offered to meet with them as I would be in the vicinity on Friday - I was met by am interim customer services manager who struggled to answer my questions, though did his best, having to disappear back into the office to get answers to my reasonable questions.

Despite the fact that we were discussing my brother's health this meeting was held in the very public reception area which I felt was inappropriate.

Well we now know that the "Individual cases review panel" meets on Tuesday 14 April - which frankly seems to be an age away. Somehow the consultant has to make a "clinical case" for treatment. The panel will not take into account age, sex, gender, sexual orientation, social circumstances, intellect or any number of other factors - it has to be purely "clinical".

But the statistics seem to be against us. 2000 case of liver cancer are diagnosed each year. Across the country's 154 PCTs that means an average of one a month. What can possibly be the clinical cases for giving it to one, rather than the other eleven? It is a completely invidious position for all concerned.

On the basis of treatment at £36,000 each (though with smarter procurement this could surely be brought down?) treating those new cases, were they all to be suitable for treatment, would cost at most £72,000,000 across the whole country.

What little I know about cancer treatments is that they are expensive to start with as the companies seek to recoup their costs and take advantage of their market lead. The clinicians get smarter at prescribing, meaning that survival rates get extended. Other companies will come up with alternatives. What costs £36,000 now will cost a tenth of that in ten years time and be used routinely. Surely it is best to "front load" the initial phase now by using it as often as possible so that clinicians can learn how to make use of the breakthrough?

I note that NICE point out that primary liver cancer is often the result of hepatitis, and alcohol abuse. As a result it is expected that the number of people diagnosed with this form of cancer will increase over the years. I hope this doesn't colour the decision making, either with NICE or with the local PCT. In our family cases, there does seem to be a genetic factor.

What really upsets us is that suddenly we have found that the NHS has an edge that we never thought existed and my brother has now reached it.

Over the coming weeks I will follow this through. I'd certainly be interested to hear from anyone else who is in a similar position.

Thanks to Ian for pulling together this helpful bibliography, which I hope may be of interest to anyone else facing the same dilemma:

Nexavar website

Side effects

Buying online

New Zealand Approves - last Thursday

US approves

China approves

Sunday Times points out NHS resistance - two years ago!

Scientific study

An "individual case" where it was approved

Another case where treatment was approved

If only we lived in Wales....

Going to appeal

NICE procedure

A comment from the Daily Mail

A case of someone who fought back