Patient Kathryn Hulland urged health leaders to agree a deal on the drug, saying that it is “heartbreaking” to know that there is a treatment “just out of reach”.
There is an “inexcusable” postcode lottery of breast cancer care, leading to patients in England, Wales and Northern Ireland being “robbed of precious extra time” with their loved ones, a charity has said.
Some patients with incurable breast cancer which has spread to another part of the body have “died waiting” for Enhertu to be made available, Breast Cancer Now said.
The treatment has been available in Scotland for more than two years and the drug is now available in 26 European countries, the charity said.
Patient Kathryn Hulland urged health leaders to agree a deal on the drug, saying that it is “heartbreaking” to know that there is a treatment “just out of reach”.
The 47-year-old mother said the drug would give her more time with her eight-year-old daughter Grace.
Ms Hulland, from Devon, was diagnosed with breast cancer in 2019.
She was told she has metastatic breast cancer in her lung and lymph nodes in 2023.
“Living with incurable breast cancer is frightening enough without being told you can’t get the groundbreaking medicine you need,” she said.
“Every extra month matters to me because it’s another month with my young daughter, another chance to make memories together, another month to be her mum and see her grow.
“Knowing there’s a treatment that could help people like me, but that it remains out of reach, is heartbreaking. We shouldn’t be here caught in a deadlock between decision-makers.
“Too many women, mums and daughters like me, have already died waiting for Enhertu. It’s time for all parties to come together and find a solution so families like mine can have what every family wants which is simply more precious time together.
“My life, and my eight-year-old daughter’s happiness, are in the hands of decision-makers. So please, make Enhertu available now for people like me living with incurable breast cancer.”
It is the first licensed targeted treatment for patients with HER2-low breast cancer that cannot be removed surgically or that has spread to other parts of the body, also known as metastatic breast cancer.
Clinical trials have found that women with breast cancer who took the drug survived for around two years, compared with 17.5 months for those who had chemotherapy.
Breast Cancer Now said thousands of people across England, Wales and Northern Ireland have “missed out” on the drug.
The charity, along with metastatic breast cancer charities METUPUK and Make 2nds Count, reiterated calls for health officials to strike a deal to make it available for NHS use.
It comes as a new poll, conducted on 2,000 UK adults by CensusWide, found that 78% said they were concerned that people cannot access the drug when it is already available elsewhere.
And four in five (82%) said the drug should be made available on the NHS.
“It’s inexcusable that Enhertu remains out of reach for people with incurable metastatic breast cancer, robbing them of the chance of precious extra time to live. Many have tragically died waiting,” Claire Rowney, chief executive of Breast Cancer Now, said.
“This is why we’re relentlessly campaigning to see Enhertu made available on the NHS in England for those who so desperately need it.
“The public have clearly spoken with three out of five (60%) declaring the postcode lottery around access to life-extending cancer drugs unacceptable, and four out of five (82%) want to see Enhertu made available on the NHS to people with HER2-low metastatic breast cancer, giving them the chance to live longer.
“People living with this devastating incurable disease don’t have time to wait.
“The clock is ticking and we need to see this unacceptable and tragic situation put right, now.
“Changes to how much the NHS can spend on new medicines have created a new opportunity for Enhertu to finally be made available. There can be no more excuses. Daiichi Sankyo, AstraZeneca, Nice and NHS England must come together urgently and agree a deal – these women need Enhertu now.”
A Nice spokesperson said: “Enhertu for HER2-low metastatic breast cancer is the only breast cancer treatment Nice has been unable to recommend in the last eight years, having made 25 positive recommendations since April 2018.
“In 2024, we concluded that, at the price offered by the company, the treatment was not cost effective, as the cost was too high relative to the benefits it would provide to patients.
“However, following the US-UK trade deal announced in December 2025, Nice is now applying a new, higher threshold for cost-effectiveness decisions. In light of these changed circumstances, discussions between Nice, the company, and NHS England have resumed, with the aim of reaching a commercial agreement that would make Enhertu cost effective.
“Nice stands ready to review its guidance should new evidence be put forward by the company, including a new commercial offer.
“We remain committed to ensuring patients receive the best possible care, and we recognise the significant impact this decision has had on the breast cancer community.”
A Department of Health and Social Care spokesperson said: “Our deepest sympathies go out to all those impacted by breast cancer.
“The independent body Nice (National Institute for Health and Care Excellence) ensures patients can access the latest treatments at a price that is fair for the NHS and taxpayers.
“Enhertu has been the only breast cancer treatment that Nice has been unable to recommend for patients in the last eight years.
“As part of the US-UK trade arrangement, Nice is now using a new higher cost-effectiveness threshold, allowing discussions with manufacturers of the drug to resume.”
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