More than a thousand patients with advanced breast cancer are being denied a drug that can keep them alive for longer. It is already available in 19 countries in Europe – including in Scotland – but not in the rest of the UK.

Jeannie Ambrose is warm and funny. But beneath the surface, she is raging.

She was diagnosed with breast cancer in May 2019, when it had already spread to her spine, pelvis, collarbone and ribs.

She was told she had three to five years to live. That was five and a half years ago – now the cancer has spread to her liver.

“I’m going to die,” the 53-year-old says. “It’s not going to end well and it’s not going to be pretty.”

But she hopes to stay alive until her children, both in their early 20s, leave home.

Jeannie is one of about 1,000 people who can’t access a treatment that could extend their lives because it has not been approved for funding on the NHS in England, Wales and Northern Ireland.

The drug, called Enhertu, can give patients with a specific type of incurable breast cancer an extra six months to live on average.

The health assessment body, NICE, is the only organisation around the world so far to say no to the drug for this condition. It says that it is too expensive for the NHS to fund.

The decision applies in England – but Wales and Northern Ireland will follow this guidance too.

Drug companies and charities have criticised NICE’s decision.

Claire Rowney, chief executive of charity Breast Cancer Now, says it is “deeply unjust that patients are currently caught in a stand-off between NICE and the pharmaceutical companies”.

Jeannie echoes these thoughts. “I want to stay alive, I want to keep living,” she says.

“I’m really, really annoyed and upset that NICE doesn’t think my life is important enough to extend.”

She says Enhertu would give her extra time with her family – and possibly keep her alive until another new treatment comes along.

When Enhertu – the first licensed treatment for HER2-low metastatic breast cancer – was launched at a cancer conference in summer 2022, health professionals gave it a standing ovation.

It gives people more time before their cancer gets worse. The drug companies that make it, AstraZeneca and Daiichi Sankyo, say some patients are still alive after three years.

There’s no dispute over how effective it is – the row is about whether or not the NHS should pay for it.

In July, NICE decided not to recommend it, saying it wouldn’t be good value for taxpayers and calling on AstraZeneca and Daiichi Sankyo to offer a better price.

Health Secretary Wes Streeting also points to the cost.

“I am incredibly disappointed that the manufacturers of Enhertu were unwilling to sell this life-extending drug to the NHS at a fair and reasonable price, despite the best efforts of NICE and NHS England,” he says.

However Dr Greg Rossi, AstraZeneca’s head of oncology for Europe and Canada, believes the company is asking a fair price.

He points to deals with 19 countries in Europe, and another 10 worldwide, including the US, Australia and Canada.

Dr Rossi says the decision by NICE is “absolutely a single outlier”.

“Every other market we’ve been talking to has either made an agreement, or we’re in discussions at the moment.”

Drug price negotiations are confidential, so he won’t be drawn on numbers, beyond saying that the impact on the medicines budget would be “relatively affordable”.

Dr Rossi says NICE changed how it assessed severe diseases in 2022, introducing a new system, known as a severity modifier, because it felt that decisions under the previous method disproportionately favoured cancer.

For this group of patients, Enhertu got a “medium” severity rating, which wasn’t enough to tip the scales in their favour.

Dr Rossi is adamant that under the old system, patients would be getting the drug on the NHS.

He pinpoints one issue: the new approach had to be “opportunity cost neutral” – in other words, including a wider range of diseases without extra NHS spending.

He is concerned the severity modifier could make it harder to launch future cancer drugs.

He says the only way to fix this is for the Department of Health and Social Care to allow more flexibility.

Another cancer drug for incurable blood cancer myeloma has been rejected too. Shelagh McKinlay, from the charity Myeloma UK, says the bar to get treatments approved “has been raised impossibly high”.

“We simply should not be here,” she says. “It’s hugely unfair for someone who could live less than 24 months without treatment to be denied the very thing that could give them more time with their loved ones because of a change to the system.”

But Helen Knight, NICE’s director of medicines evaluation, argues that the severity modifier is working. She says it has meant treatments for conditions like cystic fibrosis and hepatitis B are getting NHS funding.

She accepts that the Enhertu decision is “incredibly devastating” for patients and their families.

But she is confident that it was the right decision.

She says: “NICE has to look at the NHS as a whole, and understand that it has a finite budget. It doesn’t get any more money when we say yes to a treatment. So if we recommend treatments, then other patients are impacted.”

Jeannie put us in touch with a group of about 20 women who are all in the same position as her.

They range from their early 30s to mid 50s and all have advanced HER2-low breast cancer.

They’re all very keen to stress that they’re not slowly fading away, but are living full and busy lives.

They sent snapshots of their lives, showing them dancing with their kids, or on nights out with their friends. Some are surfers, and there’s a few cold-water swimmers and a sky diver.

They have limited options to get Enhertu – some might be able to access it through private health insurance.

If not, they could pay directly. We’ve heard of quotes ranging from £7,500 to £13,000 every three weeks.

Some told the BBC they were considering the idea of moving to Scotland, where they could get it on the NHS. Jeannie says that’s not an option for her family.

“We shouldn’t be having to think of moving to Scotland or selling our houses,” she says.

“It feels unfair. I should be concentrating on the time I’ve got left and spending time with my family and friends. I should not be campaigning, using the time I’ve got left to fight. I just feel unheard.”