Thousands of women with incurable breast cancer say they are being ‘robbed of precious time with their loved ones’ after being denied life-extending drugs available in Scotland.
In what has been hailed a ‘dark day’ for patients, the National Institute for Health and Care Excellence watchdog said Enhertu is not cost-effective.
Trials of the drug found it boosted the time the cancer was held at bay from seven months to over two years – results that were called ‘mind-blowing’ by experts.
Charities and patients said they were in ‘absolute shock’ at the decision, which comes months after it was approved north of the border.
Labelled a ‘wonder drug’ by oncologists, it is also available in 13 other European countries, as well as the US and Canada.
Sophie Blake, 51, from Brighton, was diagnosed with breast cancer in December 2020 before being told it had spread elsewhere, including to her lungs and liver in May 2022
Labelled a ‘wonder drug’ by oncologists, Enhertu is also available in 13 other European countries, as well as the US and Canada
Last night, health officials were accused of creating a ‘cruel post code lottery’ in which ‘women’s lives in England, Wales and Northern Ireland are somehow worth less’.
In a sign of growing anger, a Breast Cancer Now petition rallying against the decision had reached more than 6,000 signatures in just a few hours.
Baroness Delyth Morgan, the charity’s chief executive, blamed a ‘broken system’, adding new methods for evaluating health technologies at Nice for ‘denying secondary breast cancer patients access to potentially life-extending medicines that may have previously been approved on the NHS.’
She said: ‘This is a dark day. This means that thousands of mums, daughters, sisters and wives face knowing a treatment that could have been a lifeline for them exists, but remains out of reach.
‘Meanwhile women in Scotland have been granted access to it.’
Speaking about NHS England, Nice and pharmaceutical giants Daiichi Sankyo and AstraZeneca, she added: ’Everyone must come back to the table and find a solution that puts women first.’
Known as trastuzumab deruxtecan, it is the first licensed targeted treatment for patients with a type of cancer, known as HER2-low, which cannot be removed surgically or that has spread.
Around 1,000 women each year in England could benefit from the drug, which patients described as ‘the last roll of the dice’.
Costing around £10,000 per patient, per month in the US, it is understood the NHS offer was significantly cheaper – and less than that agreed with the Scottish Medicines Consortium.
The decision follows new NICE criteria, that gives weight to drugs used for the most severe medical cases rather than a previous focus on end-of-life treatment.
It said there were uncertainties in the evidence that meant the most likely cost-effectiveness estimates were above the range it considers an acceptable use of NHS resources.
Helen Knight, director of medicines evaluation at NICE, said: ‘Despite accounting for the condition’s severity by applying a severity modifier, and accounting for innovation and uncaptured benefits, the cost the NHS was being asked to pay was too high in relation to the benefits it provides for it to be recommended for routine use in the NHS.’
But campaigners questioned how ‘terminal cancer can be downgraded’ and accused officials of ‘betraying patients to save money’.
Sophie Blake, 51, from Brighton, was diagnosed with breast cancer in December 2020 before being told it had spread elsewhere, including to her lungs and liver in May 2022.
Although the former television presenter’s cancer is currently under control, she said she ‘lives from scan to scan’ but this has ripped away a last line of treatment when she needs it.
MS Blake, a former television presenter, said: ‘I feel that NICE, NHS England and the drug companies are basically saying our lives aren’t valued and we are disposable’
She said: ‘It just feels like a massive betrayal of patients from the people that we rely on to keep us alive to decide that people in England, Wales and Northern Ireland aren’t going to have access to this life-extending drug but if you live in Scotland, you can.
‘It’s so cruel. They’re telling us our lives aren’t worth this drug and deciding our lives aren’t worth the money, that our families don’t deserve the years this could potentially could give us.’
She added: ‘I feel that NICE, NHS England and the drug companies are basically saying our lives aren’t valued and we are disposable. It’s utterly shameful, a scandal and we will not give up the campaign to have this decision, overturned.’
It comes weeks after a major study found UK patients were less likely to be offered chemotherapy and radiotherapy than other comparable countries, directly hitting survival chances.
The treatment lottery was particularly stark among older patients, the Cancer Research UK funded study found, effectively knocking years off people’s lives.
Enhertu is already recommended for use in the NHS for other types of breast cancer in England via the Cancer Drugs Fund, which provides a route of trialling new cancer medicines.
Checking your breasts should be part of your monthly routine so you notice any unusual changes. Simply, rub and feel from top to bottom, feel in semi-circles and in a circular motion around your breast tissue to feel for any abnormalities
Symptoms of breast cancer to look out for include lumps and swellings, dimpling of the skin, changes in colour, discharge and a rash or crusting around the nipple
But draft guidance published by Nice in September said it would not recommend for NHS use in England due to uncertainties in the information provided by the manufacturer.
The drugmakers suggested changes to the way NICE now evaluates new medicines was denying patients on a ‘technicality.’
Haran Maheson, vice president at Daiichi Sankyo UK, said: ‘We are extremely disappointed that patients with breast cancer in England and Wales are going to lose out due to a technicality in the new formula Nice uses to assess cancer medicines.
‘As we have demonstrated in Scotland, it is possible to provide access to this medicine cost-effectively within the UK.
‘Patients now face a postcode lottery.’
Tom Keith-Roach, president of AstraZeneca UK, added: ‘This is a devastating decision and one which is out of step with other countries including Scotland.
‘This sits extremely uncomfortably and we call on Nice to reverse this decision.’
An NHS spokesperson said: ‘NHS England expected drug companies AstraZeneca and Daiichi Sankyo to offer this treatment at a price that would enable NICE to recommend its use for treating patients with secondary breast cancer on the NHS in England.
‘We are therefore deeply disappointed that AstraZeneca and Daiichi Sankyo have not been willing to price this treatment to enable approval, therefore denying NHS patients the opportunity to access this latest advance in care.’
