Emma Kearns: When I made a fuss I got the drug. Others are not so lucky

It has taken an age for Herceptin to reach the patients
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The Independent Online

Being told you have cancer is about the most traumatic thing that can happen to you. When it happened to me, I was terrified, as I think most people would be. I wanted to do everything possible to return to my normal, everyday life.

I didn't know a great deal about cancer, but I assumed the procedures for treating it were pretty clear. Not once did I imagine I would have to fight for a particular treatment, or that a panel would take a judgement about the value of my life.

I was wrong. What happened to me seems to be happening to many others across the country. Just over a year ago, at the age of 27, I was diagnosed with breast cancer. I had a cancerous tumour measuring 3x4cm and cancer had also reached lymph nodes in my armpit. My consultant recommended four cycles of chemotherapy in the hope of shrinking the tumour and to target loose cancer cells. This was successful. The tumour shrank to just 8mm and the cancer cells in my armpit were destroyed, so I had a lumpectomy and not a mastectomy, then radiotherapy. I am still having hormone therapy. I had four further chemotherapy sessions after surgery.

So far, my treatment seemed to have been comparatively successful, but there was every chance that the cancer would return.

My oncologist explained that I had tested positive for a protein called Her-2, which had been found on my tumour. This put me at high risk of the cancer returning. He recommended Herceptin treatment.

But Herceptin was only available on the NHS if the cancer spread, not to prevent it from spreading in the first place. Off my own bat, I did some research and found that Herceptin added about a 46 per cent chance of preventing the cancer from returning, and I fancied those odds.

The hospital which had been treating me asked my primary care trust (PCT) to fund Herceptin, but I was turned down. Apparently I was not "an exceptional case". After initial despondency, I was determined to challenge the decision. I wrote to my MP. My friends and family lobbied their MPs. I managed to get some media coverage and Herceptin treatment was raised in the House of Commons. My hospital appealed against the decision. The PCT decided it would fund Herceptin for me after all.

I am no more an "exceptional case" than any other cancer patient. It seems I became more "exceptional" after a publicity campaign and the presentation of new research, but I still don't really know why they changed their minds. Many cancer sufferers are in the dark as much as I was, and many of them aren't as lucky as I was in being vocal and having the support to challenge the decision.

Herceptin is not a new discovery. It has been around for at least 10 years, yet it seems to take an age for medical advances to reach the patients. It would cost PCTs far more to fund treatment for secondary breast cancer than for cancer prevention.

Treatment for cancer should be tailored to the individual case: the characteristics of the cancer; the balance between preventing recurrence, prolonging life and easing discomfort; ongoing reviews of response to treatments. These are not easy judgements, and should not be complicated by factors such as cost of drugs.

Cancer still causes one in four deaths and we're some way from getting its treatment right. Now that these drugs are becoming available, surely we should be exploiting them to the full.

Emma Kearns's fee for this article has been donated to Race for Life. Joan Smith is away