Wow – what a hectic couple of weeks we have had with all the TV, radio and press interviews. All because on February 9 we were told the news that the drug rationing body, NICE, had again rejected another drug for patients with incurable cancer.

NICE draft guidance states they are unable to recommend Everolimus for second line treatment of advanced kidney cancer.

We only have until March 2 to appeal this decision and so things are a bit frantic.

Although they found this drug to be clinically effective, it was found to be too expensive. They say NHS resources are limited, and yet another forecast surplus is expected, this time of £1.4bn, and patients are still being left without treatment.

Everolimus is being used in other European countries and is considered the best drug for use after Sunitinib has stopped working, or for those unfortunate patients who are unable to tolerate its side-effects.

Some patients will once again be left with nothing.

Chemotherapy and radiotherapy are not an option for kidney cancer patients and so we rely on these vital drugs to stay alive.

We are still reeling from the shock of this decision, especially after the hard fight we had to persuade NICE to relent and finally give us Sutent (Sunitinib).

These decisions have to be challenged, especially as our cancer death rate is now six per cent higher than the European average.

We are campaigning for a complete review of the NICE assessment procedures, which have proved to be unfair to many patient groups.

In particular, we want them to review the Quality-Adjusted Life Year (QALY) process used to assess the value of any medical intervention.

This is a complicated and unfathomable formula, which places a monetary value on human life to measure the benefit gained from new drugs. It is particularly cruel in that they still refuse to review the QALY limit, which was set in 1999 at £30,000 maximum, despite subsequent inflationary pressures.

Alan Johnson, the previous Health Secretary, said there would be greater flexibility towards decisions regarding end-of-life drugs. However, those of us with cancer feel that we have now become easy targets for NHS cost-cutting.

We feel totally disenfranchised and discriminated against by this callous system.

The patient numbers of those who will need Everolimus are expected to be less than 1,000, at an annual total cost of less than £4m, and yet the NHS have accrued £40m on lawyers fees alone for the National IT project which may yet be abandoned.