I have advanced prostate cancer and, when it was diagnosed two years ago, I was told it had spread to my bones and was incurable. It will kill me. Cancer patients faced with such a stark prognosis may hope and pray for a ‘magic’ treatment which will cure them but most recognise that, if finding a cure quickly is a remote prospect, there may be some chance that their disease can be ‘managed’ by new drugs in ways which will significantly extend their lives.
Recent decisions of the National Institute for Health and Clinical Excellence (NICE) not to fund certain life–extending cancer treatments on the grounds of cost have reawakened the debate on the value of an individual human life. Since 2012, 22 new cancer drugs have been rejected for use by NICE. What price should we pay to extend a life and should that price vary according to the age, infirmity or economic usefulness of the patient? Or should the amount of extra life be the key variable? Is there an absolute limit to what we agree to spend and how should that be calculated?
Those on the right of the political spectrum regard all forms of medical rationing by government bodies as abhorrent. Sarah Palin, the former American vice presidential candidate, refers to bodies like NICE as ‘death panels’ but, in her world, rationing takes place through price in the market place. Instead of medical decisions being based on clinical need, they are based simply on the individual’s ability to pay.
Most advanced countries operate a system similar to that used by NICE. It involves a calculation of something called a QALY which stands for ‘quality adjusted life years’. In assessing a new drug there are not only measures of the efficacy of the drug and the amount of additional life offered but also of the quality of that additional life. If, for example, a drug gives five extra years of life in perfect health, it is scored at 5 QALYS but, if your quality of life is assessed at half that of perfect health, then your survival would have to be for an extra ten years to be scored at 5 QALYS. This gives rise to the charge that using QALYS is inherently ageist given that older people’s general health is likely to be poorer than that of younger people. But some would go further and argue that quality of life is a subjective matter and not one you can readily or accurately quantify.
Roche’s new breast cancer drug, Kadcyla, has recently been rejected by NICE because the manufacturers want to charge £90,000 pounds for a course of treatment which, on average, is thought to add 6 months to life expectancy. NICE currently believes this is unacceptably high. In general, it regards the acceptable cost limit of one year’s treatment to be £20-30,000 but it is sometimes willing to go to £50,000.
Where does all this leave me? How much is my life worth? To me? To my family and friends? To society? In the world of prostate cancer, there is a vigorous debate about the use of two new drugs; Abiraterone and Enzalutamide. Both drugs cost in the region of £20-30,000 for a year’s treatment. I was offered a choice but told that if I had one, I might not be able to have the other at a later stage. I chose Abiraterone but, unfortunately, it was both ineffective and had very severe side effects which left me bed-ridden for a period and the treatment stopped within two months. I have since had a 7 month course of chemotherapy and have spent the summer of 2014 recovering from it.
My next course of treatment will soon need to be determined but it is still not yet clear whether, if it is thought appropriate, I will ‘qualify’ for Enzalutamide. Patients with advanced prostate cancer like mine have few alternative treatment options and the lack of clarity and consistency of NICE decisions obviously adds to already high levels of stress.
Fortunately, I am currently in pretty good health and enjoying life. I’m not only heavily involved with family and friends but I am also hard at work writing my third thriller, The Cape Town Connection. I wrote two political thrillers after receiving my cancer diagnosis and found the writing to be both a valuable distraction and an effective way of dealing with the gloomy prognosis. It is wonderful to know that the many strangers who enjoy my books do not know that I am a cancer ‘victim’. If you have a passion, it is never too late to follow it. I’m not sure how NICE will score my QALY but I give it top marks.
Robert Williams lives in Durham City and, writing as Jack Carey, is the author of The Potomac Plot and The Corcovado Conspiracy.