THE BLOG

My Father: From Practitioner to Patient - Living With Prostate Cancer

10/09/2014 17:39 BST | Updated 10/11/2014 10:59 GMT

There are moments in family life when time seems to stand still, and for me, one of those came in the spring of 2013, when my father Tazi revealed to my mother, my brother and myself that he had been diagnosed with advanced prostate cancer. The irony jumped out at us all at once - as a urologist, he had seen countless cases of prostate cancer through his professional life. Now, he was experiencing it as a patient rather than a clinician.

That same evening, he also told the three of us that he wanted his life to be as normal as possible for as long as possible, and that he wouldn't be opting for chemotherapy - the usual follow up to the hormone treatment he was then undergoing. He had clearly spent a lot of time weighing up his options and in some ways he was presenting them to us in characteristic fashion - in our home, health had always been a matter of fact rather than emotion. This was the moment that would change all that.

But there were still facts to absorb as we embarked on a journey of discovery - the first stage of which was realising how common my father's experience is. The charity Prostate Cancer UK says more than 40,000 people are diagnosed with the disease in the UK every year, making it the most common cancer in men. An estimated 10,000 people a year die of it, and as many as a quarter of a million are either living with it or have had it. And yet Owen Sharp, the charity's chief executive, says awareness and action are lagging behind: "Every year prostate cancer affects almost as many men as breast cancer affects women, but the disease receives far less of the spend. Men with advanced disease are dealt a particularly raw deal with too few treatments available."

New drugs are now coming through and one of them has made an immense difference to my father's quality of life over the last year. Abiraterone, first developed by the Institute of Cancer Research and now manufactured by the pharmaceutical company Jannsen Cilag, has been approved by the NHS for prostate cancer patients who have had prior hormone therapy and chemotherapy. However, three thousand men in England received it last year before chemotherapy through the Cancer Drugs Fund, an alternative route when a drug has yet to be approved by the National Institute for Health and Care Excellence or NICE.

Thanks to an application made in this way by his oncologist at Bedford Hospital, Rob Thomas, my father was prescribed pre-chemotherapy abiraterone and responded well to it. We witnessed a remarkable improvement in his ability to continue life almost as normal, working in the garden and on the house, continuing to see his own patients in a weekly clinic, even spearheading an initiative to build a memorial to wartime secret agents. On the evening he told us of his diagnosis, and seeing how badly affected he then was by pain, I could not have imagined all this would have been possible.

The ease of taking abiraterone - an oral dose of tablets - is striking, compared to the rigours of chemotherapy. But Rob Thomas was careful to explain to me that not every patient will benefit the way my father has. "In my experience these types of targeted biological drugs either don't work at all, or work extremely well in about 50% of cases - Tazi being one of them." We also know that the breathing space the drug has given my father is just that - at some stage, abiraterone will cease to be effective on his cancer.

We have however been fortunate thus far, and my father's experience is something I have been reflecting upon as part of a series of presenter reports on the NHS running on Today this week. Abiraterone is not cheap, with a list price of around three thousand pounds per patient per month, although the NHS pays for it at a discounted rate. Campaigners, and also the manufacturer Jannsen Cilag, have been pushing Nice to approve it for pre- as well as post chemotherapy use, believing that it will offer thousands of men with advanced prostate cancer a better quality of life.

The drugs watchdog is not convinced. Last month its latest guidance on abiraterone reiterated that it does not believe prescribing it before chemotherapy offers enough benefit to justify the price. Chief executive Sir Andrew Dillon told me the data on a drug and its price are the two fundamental elements in Nice judgements and that it takes the same approach to cancer treatments as it does for everything else. "We look at the added benefit to patients and whether there is enough additional benefit to justify what the NHS will have to pay and, in effect, take away from all the other things it could do with that money."

You might think that it would be in the pharmaceutical company's interest to lower the price of a drug if that helped convince organisations such as Nice, which hold the purse-strings, to reconsider. But Mark Hicken, Jannsen Cilag's UK managing director, insists the price the NHS pays is fair and that fears of an explosion in the cost to the NHS are overblown: "We need to remember that men who have abiraterone before their chemotherapy will not have it after chemotherapy. It's a choice of whether you have it before or afterwards and the cost would be about the same. A little common sense needs to prevail - this is one of those situations where a formulaic approach to making decisions that affect the lives of people living with serious illness doesn't always work."

The problem is that spending taxpayers' money does require a formula to help decide where to draw the line on what is worth paying for. Sir Andrew Dillon says Nice's independent advisory committees, responsible for making its recommendations, do their utmost to say yes to new drugs and look for the evidence that would enable them to do that: "We need companies to be more realistic in recognizing the real fiscal challenge that the health service is facing when they price their products. And many companies do that - we have been able to approve three new cancer treatments this year."

Jannsen Cilag's Mark Hicken also argues for realism - but about the challenges of drug development: "Through our innovation centre we support a lot of early research and development efforts and not all of our investments pay off. We are involved in a very risky business, we can have new medicines fall at the final hurdle, having spent hundreds of millions or even billions on them. There are occasionally successes but there are also some fairly spectacular failures in our industry."

A final decision on pre-chemotherapy abiraterone is due to be made by Nice this month and the Institute of Cancer Research is urging it and the drug-maker to do everything possible to find a compromise so that it can be more widely prescribed. The drug is one of the success stories that has emerged from the ICR's laboratories, but it says men will now have to wait until they are in the final stage of their lives before they can access the treatment.

For my father, and for all of us who are close to him, every moment that abiraterone continues to work is a blessing. It has helped him maintain his professional life and continue doing the things he enjoys - so much so that at times I almost forget he has cancer, let alone one that has spread and is at an advanced stage. I know that is not purely about the medication, but also the effort he makes to be the same strong person we know and love - the person accustomed to give rather than receive advice on health. He still strides into Bedford Hospital, only now there are days when he goes in to attend a clinic rather than hold one. But for every one of those days, I am grateful.

Mishal Husain presents the Today Programme on BBC Radio 4, which is this week running a series of special presenter stories about the NHS. Catch up on BBC iPlayer