Abiraterone: The £810 Monthly Drug the NHS Buys for £75

Every morning, an hour before breakfast, I take two large oval shaped pills containing the drug abiraterone, the hormone therapy which suppresses testosterone production. For men like me, who’ve been diagnosed with the kind of prostate cancer that hasn’t yet spread – but is at high risk of doing so – it reduces the risk of cancer returning by 50 per cent, improving survival rates by 40 per cent. These pills were almost impossible to get hold of and cost £810 a month, and I’ve been taking them for almost a year. I know how lucky I am. In November 2024 I received my cancer diagnosis after complaining to my GP the month before of urinary flow issues – getting up more frequently in the night, then suffering stop-start attempts to pee. Sleep broken by frequent loo trips is seen as “normal male ageing” – but I wanted to get checked because five years before that, with the same symptoms, I’d been given a prostate-specific antigen (PSA) test. Back in 2019 my PSA level was 4.5 (anything around four is considered the upper end of “normal”, depending on age). PSA levels can rise for benign reasons, but it can also flag prostate cancer, sometimes before anything else feels wrong. Aged 68, my PSA was 14. I had just retired from my job as a chief operating officer of a biotechnology company. I’d been looking forward to spending more time at home in North Devon with my wife, Mandy, another scientist, planning long country walks, playing more gigs with my band, and seeing more of our three 30-something children. I’d spent my professional life in biotechnology research and development, helping to develop new medicines and working with major pharmaceutical companies. I understood all about clinical trials, evidence and outcomes. What I understood was how frightening it feels, after confirmatory tests, including a repeated PSA test, an ultrasound, an MRI and finally a biopsy, to hear being told “you have cancer”. I had high-grade, high-risk prostate cancer. My Gleason score – the grading system used to classify prostate cancer under the microscope – was nine out of 10, suggesting a very aggressive cancer likely to spread if untreated. An expert nurse reassured me: prostate cancer often progresses slowly. But then she added, carefully, that “the crucial point is whether it stays localised”. Once prostate cancer becomes metastatic, spreading beyond the prostate, it’s far harder to treat. Further scans were needed to see if mine had spread, and terrifyingly something suspicious showed on my spine in a bone scan. While we’d told our three children about the cancer, Mandy and I chose not to share that it may have spread. I asked for a PSMA (prostate-specific membrane antigen scan) next, which I knew was more accurate at detecting if it had spread. But the NHS waiting list was around five weeks. Too long to feel so anxious: so I paid around £700 to have it done privately within 10 days. Those 10 days of not knowing were the hardest part, and the night Mandy and I discovered the spinal “hot spot” was an old injury, not metastasis, we opened a bottle of wine to celebrate. Then I was placed on what clinicians call the “curative intent” pathway, meaning the aim is eradication, rather than a palliative one of only management. I was offered treatment options, and there’s a strong instinct to “get it all out” and go for surgery, but after looking at the data, radiotherapy seemed better for me, with side effects less severe than prostate removal, which risks damaging the nerves controlling continence and erections. For three weeks I underwent intense radiotherapy. Halfway through, I developed bowel issues and urinary urgency, which of course causes so much anxiety, uncertain as to whether these symptoms would abate. But it eased, and two weeks later I went to Glastonbury with the kids. With cancer you stop saving experiences for “later”. I remember listening to Olivia Dean – while quietly tracking the nearest loos – but feeling grateful to be there. After being diagnosed, Mandy and I had spent many evenings researching what we could, and I’d learned about abiraterone, the hormone therapy that comprehensively suppresses testosterone production. As prostate cancer is commonly fuelled by testosterone, standard NHS treatment includes injections that shut down testosterone production from the testes. But the body can also produce testosterone through other routes, including the adrenal glands, and aggressive cancers can adapt. Abiraterone blocks a key enzyme involved in testosterone production, starving the cancer further. Abiraterone has been provided on the NHS in Scotland and Wales since 2023, but until now it was only approved in England and Northern Ireland for patients with advanced prostate cancer only, not for localised high-risk prostate cancer like mine. Despite it improving outcomes and reducing the risk of dying when added to the standard care. My NHS consultant had been involved in the clinical trials of the drug herself, so I could see her frustration at having to tell me she couldn’t prescribe it, while fully understanding that it might help extend my life. The irony that I’d worked my whole career in drug development yet couldn’t access what I now needed wasn’t lost on me either. Mandy and I even discussed moving to Scotland, but from savings we had the financial means to go private. Even so, the process was not “easy”. There were phone calls, referrals and persistence – and a ticking clock. Clinical trials with abiraterone started within three months of commencing treatment, no one knew whether it was effectively taken after that time. There was a huge pressure to get hold of it and eventually we found a source through Exeter Hospital’s private patients unit. They can arrange drugs not available on the NHS if a consultant will prescribe and the patient contributes towards payment. Finally, in March last year I received my first delivery of the much-wanted pills by courier. I was the first person in Devon at my stage to receive it. And I’m relieved to say I’ve been taking it every day since then. The side effects for me have been manageable. Yes, my libido and sex drive disappeared, but that’s also a feature of standard prostate cancer hormone treatment, not unique to abiraterone. The cost, at £810 a month (the NHS can obtain it for around £75 a month), was high. That disparity is hard to justify to yourself when you’re staring at a box of pills and thinking: this is my life in tablet form. Mandy and I could afford it; many men cannot. That thought sat heavily with me, in fact I’ve shied away from the online support forums, too guilty to admit I was on the drug when I knew it was not affordable for so many. Though we were paying for the pills ourselves, the NHS still monitors me: monthly blood checks (my PSA levels, happily, have been undetectable for eight straight months) and I speak to a consultant urologist every three months. Abiraterone can raise blood pressure so that is checked too. Abiraterone gives me peace of mind. Statistically I am more likely now to die one day of something totally unrelated to prostate cancer, not because of it. If things continue well for another 11 months or so, the drug can be stopped. You don’t remain on it for life. I’ll never be told I’m “cured” because you simply never know, but regular PSA monitoring means they can catch it early if it returns. Cancer has sharpened the sense that my days are numbered, reminding me to enjoy life, spend more time with family. We travelled to Asia last year, and I’ve taken up singing lessons to perform the songs I write in local gigs. My one message to other men? Ask your GP for a PSA test. Don’t wait to be invited. Don’t assume urinary symptoms – nights broken by repeated trips to the toilet – are “just age”. We fear the findings, but get the test – if it’s nothing, you’ll be reassured. If it isn’t, you may have caught it in time. Prostate cancer often has no symptoms at all. Personally, I’ve had the best result I could have hoped for, and if I start receiving my pills on the NHS now I plan to use the money saved on a holiday. But more importantly, now abiraterone has been approved more widely, I’m just happy knowing that men after me may not have to scramble and pay privately to access the best available treatment. As told to Susanna Galton