A FEW months after my cancer diagnosis, I became involved in campaigning for access to drugs.

I had seen various reports in the Oxford Mail of kidney cancer patients being turned down for vital life-extending drugs by Oxfordshire Primary Care Trust and I wondered why.

These tales were harrowing and had to stop!

Kidney cancer is considered to be a rare cancer, and if the cancer has spread to other parts of the body then the treatment options are limited. Chemotherapy is not effective.

Patients were still being treated with Interferon, a highly toxic drug, with a low response rate.

We wanted Sunitinib, a considerably more effective life-extending drug licensed in 2006. It was considered the global gold standard treatment and available in many other countries.

Along with three other drugs for kidney cancer, Sunitinib was expected to be recommended by the National Institute for Health and Clinical Excellence (Nice), the body which decides which drugs are prescribed on the NHS.

I had a letter from the Department of Health which said it had made it clear to the NHS it was not acceptable for funding for licensed treatments to be withheld from patients simply because Nice had not yet published guidance on them.

But here in Oxfordshire the PCT ruled Sunitinib should only be prescribed in “exceptional circumstances”.

Imagine how we felt when we found out it was available in other areas of the country. It was yet another example of a so-called postcode lottery.

Many of us had paid a lifetime of taxes, and yet we had been abandoned by our local PCT.

Clearly, Oxfordshire PCT did not think our lives were important enough to warrant the cost. Indeed, I discovered it did not even bother to have a specialist clinical oncologist present when they decided their policy, so how could they come to a fully informed decision?

They were also sitting on a surplus of £2m, money which should have been spent on patient treatment and care. As a result of this harsh local policy, to my knowledge, at least five brave patients have died having been denied Sunitinib.

Just by chance, I met my MP, David Cameron, in Henley. I explained to him our situation and later took a group of patients to see him in his surgery. He listened sympathetically and offered to help.

However, the PCT was still adamant it would not reconsider its policy, despite the many letters I wrote and meetings I attended. Indeed, at one such meeting the PCT admitted Sunitinib was clinically effective but not cost-effective.

We had no option left but to await Nice’s final decision, due in August last year. It was expected to be positive, but we feared the worst.

It was then I formed the Oxfordshire campaign group Justice for Kidney Cancer Patients. We would soon be known nationwide...