Terminal breast cancer patients told by medical staff a life-extending drug would be available to them look set to have access to the drug withdrawn.
The National Institute for Health and Care Excellence (NICE) is reviewing all drugs made available through the old Cancer Drugs Fund, and have rejected Kadcyla for use on the NHS.
They believe the price per patient set by manufacturer Roche – £90,000 at full cost – is too expensive.
Roche says discussions are continuing.
In clinical trials, Kadcyla was shown to extend terminal breast cancer patients’ lives by an average of six months, and to dramatically improve quality of life when compared with other treatments.
It is used to treat people with HER2-positive breast cancer that has spread to other parts of the body and cannot be surgically removed.
Bonnie Fox, 39 from Croydon, south London, told the BBC’s Victoria Derbyshire programme that she was informed by her oncologist that the drug would be available to her when her current drug became ineffective.
She said when she discovered the drug was no longer routinely available on the NHS she was “completely devastated”.
“I’m really dependent on those extra years… they could [help me achieve] extra milestones with my son, help me see him get to school.
“To have that suddenly taken away feels so cruel. You know that drug is there, and you know that drug is good,” she added.
Patient Gill Smith was assured by her oncologist that Kadcyla would be available when she needed it.
“[My oncologist] said if Kadcyla were ever going to be withdrawn they’d be chaining themselves to railings… it was unthinkable it would be no longer available.”
The drug had been available through the old Cancer Drugs Fund – a ring-fenced fund set up by the government to help people in England access costly cancer drugs that are not routinely available on the NHS – since 2014.
But that fund was closed in March 2016 and replaced with a new approach to the funding of cancer drugs which includes the so-called new-look Cancer Drugs Fund.
But Dr Mei-Lin Ah-See, a consultant in clinical oncology at the Mount Vernon Cancer Centre, believes NICE’s failure to approve the drug for routine availability on the NHS “not only comes at the expense of survival for our patients, but would come at the price of toxicity,” as alternative drugs result in greater side-effects for patients.
She said the UK Breast Cancer Group – a group of senior medical and clinical oncologists specialising in breast cancer treatment – would be writing to NICE to request that the decision should be reviewed and an accommodation found to keep the drug available for NHS patients.
Carole Longson, of NICE, said the watchdog “knows how important it is for people with breast cancer that they have access to life-extending treatments, but the reality is the cost of this drug is too high relative to those benefits for it to be recommended for routine use.”
A NICE spokesperson added: “NICE would like to be able to support the routine use of Kadcyla on the NHS and we are open to an approach from Roche with ideas about how they can make this happen. They have been in touch with us and we are arranging a further meeting with them, during the consultation period.”
Richard Erwin, general manager for Roche UK, said: “This is not the end of the line for patients. We want to get back round the table with NICE to turn this preliminary decision around and ensure we all do the right thing for patients and their families.”
Watch the Victoria Derbyshire programme on weekdays between 09:00 and 11:00 on BBC Two and the BBC News channel.