Prostate cancer patients denied ‘really cheap, life-saving’ drug on NHS in England – due to ‘senseless red tape’
PROSTATE cancer is the most common cancer in men worldwide.
This week, former US president Joe Biden revealed he has an aggressive form of the disease that’s spread to his bones.
In the UK, more than more than 55,000 new cases are diagnosed every year, and 12,000 men lose their lives.
Treatments are available – from surgery to hormone therapy – which offer patients more valuable time with loved ones.
But not everyone is eligible for all drugs on the NHS, pushing many Brits to shell out their life savings just to stay alive.
Every year, Keith ter Braak is forced to spend a staggering £34,000 on pills to stop his cancer from spreading.
The retired Marks & Spencer merchandise executive, 82, pays privately for abiraterone to give him more precious time with his wife of 55 years, Mary Irene, 76.
Keith has locally advanced prostate cancer – when the disease is just starting to break out of the prostate.
NHS England will only fund the medicine for those with advanced cancer which has spread to other parts of the body, citing lack of funds, but it’s offered as a first treatment option for free in Scotland and Wales.
“Abiraterone keeps me alive,” Keith, who lives in Somerset, tells Sun Health.
“Which will last longer? My bank account or my health? I don’t know.”
Abiraterone is a type of hormone therapy that stops the body producing testosterone.
While it won’t cure prostate cancer, it can help keep it under control and manage symptoms.
Every year, 8,400 men are diagnosed with locally advanced prostate cancer in England.
“It’s the most high-risk sort because it’s either really aggressive or started to spread,” Amy Rylance, assistant director of health improvement at Prostate Cancer UK, says.
“For over a third of these men, the curative treatment [radiotherapy] doesn’t actually work and the cancer comes back.
“That’s why a drug like abiraterone could be a game-changer for men with this diagnosis.”
Making abiraterone available to men with locally advanced prostate cancer could save 672 lives a year, the charity calculates.
“Some 1,300 men have been condemned to die in the last two years, and until the treatment is approved, this will be the fate of another 13 men every week,” Amy says.
“It’s gutting. Abiraterone is now really cheap – the NHS could get it for £2.75 per patient per day – but people are spending their life savings to buy it privately.”
Keith was diagnosed with prostate cancer in November 2019.
He underwent radiotherapy and hormone treatment, but in August 2022 a large tumour appeared on the right side of his prostate.
What are the symptoms of prostate cancer?
Symptoms of prostate cancer can include:
- needing to pee more frequently, often during the night
- needing to rush to the toilet
- difficulty in starting to pee (hesitancy)
- straining or taking a long time while peeing
- weak flow
- feeling that your bladder has not emptied fully
- blood in urine or blood in semen
Source: NHS
By November, the cancer was spreading to his pelvis. Keith began paying for abiraterone a month later.
It left him with “extreme fatigue”, a common side effect, but the twice-daily tablets have so far kept his cancer from spreading.
“I’m on this until it stops working, or as long as I can afford it,” Keith says.
“Currently, I spend roughly £34,000 a year to stay alive.”
It means money saved to support him and Mary into old age is “rapidly disappearing”.
“As we get older, the likelihood is that we’ll need assistance, care, who knows?,” Keith says.
In 2023, the largest trial of its kind, STAMPEDE, found abiraterone halved the risk of the disease returning in patients with locally advanced prostate cancer, and halved the number of deaths, when given alongside radiotherapy.
“This is a life-saving drug,” Amy says.
Leading expert, Professor Nick James, chief investigator on the STAMPEDE trial, at The Royal Marsden and Institute of Cancer Research, tells Sun on Sunday Health: “Abiraterone roughly halves the risk of a patient developing metastatic disease, and reduces the risk of dying by 40 per cent, so it’s a no brainer.”
Currently, I spend roughly £34,000 a year to stay alive Keith
Abiraterone has “been around for a very long time” so its patent protection – which grants a company exclusive rights to manufacturing and selling products – expired two years ago.
This allowed multiple companies to start making it, sending the price per pack plummeting from thousands of pounds to £77.
Scotland and Wales “very quickly stepped in”, approving it for the treatment of high-risk prostate cancer by January 2023.
Prof James adds: “The STAMPEDE trial showed that from the point that abiraterone came off patent and became a generic drug, it would be cost saving for the NHS to provide it to these patients.
“NHS Scotland and Wales listened, but in England it is still not offered as a treatment.
“A lot of men will be cured by the standard treatment, but for those patients where the standard therapy doesn’t work, abiraterone vastly improves their outcomes.
“It makes no sense on any level to deny these patients – it improves their outcomes and will save the NHS money.”
“In England, we seem to have got stuck in this bureaucratic blockage,” Amy says.
For drugs to be approved for NHS use in England, manufacturers need to apply to the National Institute for Health and Care Excellence (NICE).
“It’s quite an admin heavy process, but companies do it because they’ll make money,” Amy says.
“The problem with abiraterone is that it’s off-patent and a cheap generic drug, so it’s not in any one company’s interest to do all the work.”
In these cases, it falls to individual national health services to decide whether to deliver treatment.
“We’re stuck in a situation where the evidence is very clear that this drug saves lives, but doctors aren’t allowed to prescribe it for men with a high-risk diagnosis,” Amy says.
The problem with abiraterone is that it’s off-patent and a cheap generic drug, so it’s not in any one company’s interest to do all the work
In December 2024, abiraterone was assessed by the Clinical Priorities Advisory Group (CPAG), which looks at whether treatments are of “value for money”.
It decided abiraterone was “a level one priority drug”, meaning it offers the highest clinical benefit and lowest relative cost.
Analysis by the Institute of Cancer Research (ICR) also showed it could save the NHS money.
‘HALVES RATE’
It was published when abiraterone was still patented, but authors said it would be cost effective if its price dipped below £28 a day, and cost-saving if it fell below £11.
When cancer comes back after treatment, it can be expensive as patients need multiple scans and appointments, as well as drugs to fight the disease – possibly for the rest of their lives.
One in eight men will get prostate cancer
The risk of developing prostate cancer depends on many factors, here are some of the facts about the disease and how many men it affects.
- One in eight men will get prostate cancer in their lifetime
- It is the fourth most common cancer worldwide, and the most common in men
- There are 55,000 new cases every year in the UK, and 1.4million globally
- Around 12,000 people lose their lives to prostate cancer annually in the UK and almost 400,000 around the world
- Prostate cancer accounts for 28 per cent of all new cancer cases in men in the UK, and 14 per cent of all new cancer cases in men and women combined
- Prostate cancer survival has tripled in the last 50 years in the UK
- More than three-quarters (78 per cent) of patients survive for 10 or more years
- About 490,000 men are living with and after prostate cancer in the UK
- It is most common in men aged 75 to 79
- Since the early 1990s, cases have increased by 53 per cent in the UK
- Mortality rates are up 16 per cent since the early 1970s in the UK
- Incidence rates are projected to rise by 15 per cent in the UK between 2023 to 2025 and 2038 to 2040
- Mortality rates are expected to fall five per cent in the UK over the same years
Source: Prostate Cancer UK, World Cancer Research Fund International and Cancer Research UK
As abiraterone “halves the recurrence rate” of prostate cancer and costs £2.75 per patient per day, it could save the NHS over £2,000 per patient and up to £20million a year, PCUK estimates.
However, NHS England says it doesn’t have the money to pay for widespread use.
The core of the issue is that NHS England would have to shoulder the cost of commissioning abiraterone, while the specific trusts benefit from the “huge savings”.
Giles Turner, 64, says he hasn’t experienced any side effects of abiraterone.
The retired banker, who lives in Brighton, started on the standard hormone treatment called Zoladex when he was diagnosed with prostate cancer in March 2023, after noticing blood in his urine.
“The cancer was quite significant and quite aggressive,” he tells Sun Health.
He experienced what he described as a “male menopause”, including hot flashes and weakened muscles.
“When I started taking Abiraterone, I didn’t get any more side effects,” he says.
“It’s a relatively easy drug to take.”
Giles found out about abiraterone through a prostate cancer support group called PCaSO and decided to start taking it privately.
“My diagnosis fitted right within that slot where abiraterone has been shown to halve deaths.”
He’s been able to stay active while on the treatment; swimming, running and skipping.
“I think the abiraterone has clearly helped,” Giles says.
“If things go to plan, it won’t come back. So it’s a lifesaver.
“I feel I’ve halved my chances of dying within the next six, seven years.
“So it’s gone from 15 per cent to 7 per cent. The risk of recurrence is halved as well.”
“My diagnosis fitted right within that slot where abiraterone has been shown to halve deaths.”
He’s due to wrap up his two years of treatment on the drug in a couple of months and at the moment “everything’s on track”.
But the drug is costing Giles “a fortune”, he says.
He pays £250 for a 28-day cycle of abiraterone.
But along with blood tests and appointments to check up on his progress for the drug, he’s ended up spending £20,000 on his treatment so far.
“I’m lucky in the sense that I can afford it,” Giles says.
‘I’M LUCKY’
Keith says it’s “mad” that men in England can’t access abiraterone on the NHS until their cancer has spread.
“We ought to get it while it’s still contained,” he says.
“My cancer is not in my control, I’m not taking abiraterone for fun.”
Giles describes the situation as “absurd”.
“Not only is [abiraterone] cheap, it’ll save the NHS money.
“It’s an extraordinarily bizarre situation. It makes me really angry to think about it.
“Scotland approved it in no time at all, so did Wales. It’s an international standard now, so England is a complete outlier in this.
“It’s making an irrational decision that’s costing itself money in the long term.”
The future of abiraterone now sits with the Department of Health and Social Care (DHSC), which announced in March that it would review the situation.
“We understand the frustration and upset of some patients who cannot access this potentially life-saving treatment,” a spokesperson said.
“Ministers have requested urgent advice on the issue.”
Addressing the DHSC directly, Keith said: “You can’t carry on thinking about something when people are dying.”
