Thousands of men miss out on life-extending prostate cancer drug

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Giles Turner, from Sussex, is paying for abiraterone privately at a cost of £250 per month
By Hugh Pym, health editor, and Ian Atkinson
BBC News

Thousands of patients in England and Northern Ireland are missing out on a life-extending prostate cancer drug that is more widely available on the NHS in Scotland and Wales, say experts.

Charity Prostate Cancer UK said it was “unacceptable” that men in parts of the UK were facing a postcode lottery.

Although not a cure, abiraterone can help stop prostate cancer spreading to other parts of the body.

NHS England said it would review the drug’s use for more men next year.

In England and Northern Ireland, the drug is only approved for men with very advanced prostate cancer which has spread to other parts of the body.

Last year, the Stampede trial showed that abiraterone could benefit a larger group of men with earlier stage tumours that hadn’t yet started to spread. It works by lowering testosterone production in the body which can fuel some cancer cell growth.

The study showed it could halve the risk of the cancer spreading and significantly reduce the chance of death six years on from diagnosis in that group.

Prostate Cancer UK believes at least 5,000 out of 52,000 newly diagnosed prostate patients in England each year could benefit from the hormone therapy if it was offered to more men.

‘Fortunate I can pay’

Giles Turner, a retired banker who lives in Sussex, was diagnosed with a type of high-risk prostate cancer which hadn’t spread in March 2023 – but was not given abiraterone.

His consultant told him it was not available through the NHS in England for patients with his type of prostate cancer, although he could pay for it privately at a cost of £250 per month.

“I feel very fortunate that I can afford it. I think it’s outrageous there are men in England who aren’t getting this because they can’t afford it,” he said.

“It’s not about cost. No-one seems to be disputing the science – it seems that it’s just a bureaucratic process which is kind of unbelievable.”

A recent trial showed that abiraterone could benefit a larger group of men with earlier stage tumours

The Scottish and Welsh governments have stepped in to make the drug available on the NHS in those nations.

In January 2023, NHS Scotland decided to begin offering it to more men – those with cancer that has not visibly spread but is at high risk of spreading elsewhere in the body, also known as non-metastatic disease.

The Welsh Government has also said abiraterone can be used for that group of patients, with the guidance to be kept under review.

The drug recently went off patent and became “generic”, meaning any pharmaceutical company could make and sell it if it wanted to, which has driven the price tag down.

‘Very frustrating’

Prof Nick James, an expert in prostate cancer at the Institute of Cancer Research – the centre that first developed the drug – wants the National Institute for Health and Care Excellence (NICE) and NHS England to extend the availability of abiraterone.

But NICE, and the medical regulator the MHRA, need a detailed and time-consuming application for a drug’s usage to be extended.

Since abiraterone is now generic, there is limited incentive for companies to seek approval for it to be prescribed for a wider group of patients, Prof James says.

“It’s in a grey area – it’s classed as repurposing a drug – and it happens rather slowly,” he explained.

“It’s very frustrating because this treatment is in standard guidelines in most of mainland Europe and the US, and patients here are very aware of that.”

Prof James says it’s “very distressing” for patients. “They could have an option but have to pay out of their pocket – the drug is really quite affordable, particularly given what you save further down the line.”

Amy Rylance, from Prostate Cancer UK, said: “In parts of the UK, systems have been set up so that when drugs come off patent they can be quickly and safely appraised for use on the NHS.

“We would like to see this option available in every part of the country, so that no man is unfairly disadvantaged.”

The charity is also calling for another group of 5,000 patients with more advanced prostate cancer who are not currently eligible for abiraterone in England to be offered the drug too.

In a statement, NICE – the body in charge of health guidance in England – said: “The use [of abiraterone] in the non-metastatic setting is considered to be off-label.”

It said it is only allowed to look at the purpose the drug is licensed for and so cannot evaluate the drug’s cost-effectiveness for anything else.

A spokesperson from the Department of Health and Social Care said they understood “the frustration of some patients in England” who cannot access the medicine.

NHS England is set to review its wider use next year.

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17 October 2022

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