Abiraterone, a clinical sounding term, but one which has entered the vernacular, at least for the hundreds and thousands of men who have prostate cancer.
The breakthrough drug, which extends life with relatively few side effects, for men with advanced forms of the disease, became a symbol last month – a symbol that the tide is turning on the ‘oft-quoted’ legacy of neglect around this disease.
When the National Institute of Clinical Excellence (NICE) announced it would not make the drug available on the NHS in England and Wales, we picked up the baton for men, determined to see this reversed. We were joined by a natural groundswell of a powerful group of MPs, journalists, clinicians and, of course, men themselves, determined to see this overturned.
Happily, we were able to argue successfully that this decision was the wrong one for men, and that the drug should rightfully be reviewed as an end of life treatment. At the same time the manufacturer also lowered its price. Abiraterone will now be available for men in England and Wales, later on this year. Articles like this one from Jenny Hope, in the Daily Mail show how strongly feeling ran around this – and the level of cooperation and support for the campaign, fuelled, in part, by a collective indignation that men with this disease have had a raw deal for too long. A rare feat indeed.
But the campaign is far from over. With Northern Ireland expected to follow suit, our attentions are now on Scotland, where the Scottish Medicines Consortium (SMC) is refusing to make abiraterone available to the men who need it north of the border.
It was timely, then, that I was in Edinburgh this week, meeting with Scotland’s Deputy First Minister and Health Secretary Nicola Sturgeon MSP to discuss this and other important issues around the disease. Although the Scottish Government would not instruct the SMC to make abiraterone available on the NHS, the Health Secretary did agree to make contact to see if anything can be done to speed up the process (currently due on 13 Aug) and ensure health boards are in a position to get moving should the drug be approved. Good news indeed.
If the past few weeks have taught us anything it is that accepting the status quo is just not acceptable. The rates of prostate cancer diagnosis are rising in the UK – against a backdrop of imperfect tests, complex treatment options that risk unnecessary side effects, and a postcode lottery when it comes to support and information. Nothing short of strident action is needed for the fathers, grandfathers, husbands and best friends this disease affects all too regularly. The victory around abiraterone in England and Wales has to be the beginning – not the ‘happy ending’.