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

Jenny Ambrose is warm and funny. But beneath the surface, she is furious.

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

He was told he had three to five years to live. That was five and a half years ago – now the cancer has spread to his liver.

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

But she hopes to survive until her children, who are in their early 20s, leave home.

Jenny is one of around 1,000 people who cannot 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.

A drug called Enhertu could give patients with a specific type of incurable breast cancer an average of six months of extra life.

The health evaluation body, NICE, is the only organization worldwide so far to say no to the drug for this condition. It says it is too expensive to fund the NHS.

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

Pharmaceutical companies and charities have criticized NICE’s decision.

“It is deeply unfair that patients are currently caught in a standoff between NICE and pharmaceutical companies,” says Claire Rowney, chief executive of the charity Breast Cancer Now.

Jenny echoes these thoughts. “I want to be alive, I want to be alive,” she says.

“I am really upset and disappointed that NICE does not think that my life is important enough to be upheld.”

She says Enhertu will give him extra time with his family — and possibly keep him alive until a new treatment comes along.

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

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

There is no dispute over how effective it is – the dispute is about whether the NHS should pay for it.

In July, NICE decided not to recommend it, saying it would not be good value for taxpayers and called on AstraZeneca and Daiichi Sankyo to offer better prices.

Health Secretary Wes Streeting also points to the cost.

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

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

He points to deals with 19 countries in Europe and 10 other countries around the world, including the US, Australia and Canada.

Dr Rossi says NICE’s decision is “absolutely an extraordinary one”.

“All the other markets we’re talking to have either reached an agreement, or we’re in discussions at the moment.”

Drug price negotiations are confidential, so he wouldn’t delve into numbers, other than to say the impact on drug budgets would be “relatively economical.”

Dr Rossi says NICE changed the way it assesses serious diseases in 2022, introducing a new system, known as a severity modifier, because they felt decisions under the previous method were made inequitably. Was in favor of cancer.

For this group of patients, Enhertu received a “moderate” severity rating, which was not enough to tip the scale in their favor.

Dr Rossi is adamant that patients will get the medicine on the NHS under the old system.

He points out one issue: the new approach needs to be “opportunity cost neutral” – in other words, covering a wide range of diseases without incurring additional NHS spending.

They worry that severity modifiers could make it harder to launch cancer drugs in the future.

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

Another cancer drug has also been rejected for the incurable blood cancer myeloma. Shelagh McKinlay of the charity Myeloma UK says the bar for getting the treatment approved has been “impossibly high”.

“We shouldn’t be here,” she says. “It’s deeply unfair that someone who could live less than 24 months without treatment should be denied something that could happen because of a change in the system.” Can give him more time with his loved ones.”

But Helen Knight, NICE’s director of drug evaluation, argues that the severity modifier is working. She says this means treatments for conditions such as cystic fibrosis and hepatitis B are getting NHS funding.

She acknowledges that Enhertu’s decision is “incredibly devastating” for patients and their families.

But he is confident that it was the right decision.

She says: “NICE needs to look at the NHS as a whole and understand that it has a limited budget. When we say yes to treatment we do not get any more money. So if we recommend treatment, other patients are affected.”

Jenny put us in touch with a group of about 20 women who were all in the same situation as her.

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

They are all very keen to emphasize that they are not slowly fading away, but living full and engaged lives.

They sent snapshots of their lives, showing them dancing with their kids or having a night out with their friends. Some are surfers, and some are cold water swimmers and one sky diver.

They have limited options for getting Enhertu – some people may be able to get it through private health insurance.

If not, they can make payment directly. We’ve heard bids ranging from £7,500 to £13,000 every three weeks.

Some people told the BBC they were considering moving to Scotland, where they could get it on the NHS. Jenny says this is not an option for her family.

“We shouldn’t be thinking about moving to Scotland or selling our house,” she says.

“It seems unfair. I should focus on my remaining time and spend time with my family and friends. I shouldn’t be campaigning, I should be using the time I have left to fight. I just feel unappreciated.” “I am feeling.”