Charities launch appeal to reverse Nice decision on life-saving cancer treatment

A formal appeal has been sent to the NHS spending watchdog regarding its decision to remove a potentially life-saving cancer treatment from the health service in England and Wales.

Tecartus – which engineers a patient’s own immune cells to kill cancer – was made available for people with a rare type of non-Hodgkin lymphoma through the Cancer Drugs Fund while more data was collected on its long-term benefits.

However, the National Institute for Health and Care Excellence (Nice) has recommended against rolling it out on the NHS after finding it did not “work as well in clinical practice as it did in trials”.

Now, Blood Cancer UK, Lymphoma Action and stem cell charity Anthony Nolan have formally appealed against the decision amid concerns for patients with “very limited alternatives”.

The group also branded the move a “backward step for NHS care”.Tecartus, also known as brexu-cel, was recommended for certain patients over the age of 26 with relapsed or refractory mantle cell lymphoma, a blood cancer that impacts the white blood cells that help fight infection.

It is the only Car T-cell therapy available for the disease, which affects about 600 people a year in the UK.

Dr Rubina Ahmed, director of research, policy and services at Blood Cancer UK, said: “For some people with mantle cell lymphoma, whose cancer has come back or hasn’t responded to previous treatment, this Car T-cell therapy offers a last hope of a cure.

“We recognise that Nice decisions involve complex clinical and economic considerations but we are concerned about what this could mean for patients who have very limited alternatives.

“That’s why we have formally submitted an appeal, raising questions about how this treatment has been assessed and the implications of this decision for patients. It’s vital that advances in blood cancer treatment are reflected in the options available to people in practice.”

Emily John, a specialist nurse in the treatment at Anthony Nolan, added: “We are deeply disappointed by Nice’s decision.

“As a specialist nurse, I’ve seen first-hand how Tecartus has transformed the lives of patients living with mantle cell lymphoma, offering them a lifeline when other treatment options haven’t worked.

“The removal of the only Car T-cell therapy available for people with mantle cell lymphoma is incredibly troubling and a backward step for NHS care.

“We urge Nice and the manufacturer to find a solution so people with relapsed mantle cell lymphoma don’t lose access to this potentially life-saving treatment.”

Paul Madley, 66, from Cardiff, was diagnosed with stage 4 mantle cell lymphoma in 2021.

He had multiple rounds of chemotherapy and entered remission. However, his cancer returned in July 2024.

“Fortunately, I was put forward to receive CAR T-cell therapy and began treatment in autumn 2024,” Mr Madley said.

“By March 2025, I was given the wonderful news that I was in remission and that’s where I currently remain. I lead a full and active lifestyle – I have returned to work as a consultant chartered surveyor three to four days a week, walk my dog most mornings, play golf and generally enjoy my life as I did before my illness.

“To therefore be told that Nice have decided to remove this treatment I find truly unbelievable. I have a whole host of different emotions on their decision – sadness, incredible disappointment and anger to name but a few.

“This treatment is helping to prolong lives of people like me – without it goodness knows where I would be.”

Anxious

Ropinder Gill, chief executive at Lymphoma Action, said the charity has received a number of enquiries from concerned and anxious members of its community.

“There is now a lot of distress that this treatment could be removed as an option,” she added.

A Nice spokesperson said the organisation welcomes the appeal and highlighted that anyone who has started the treatment will be able to complete it.

They said: “We understand this decision will be deeply disappointing for people with mantle cell lymphoma and their families, and we recognise the distress it has caused.

“Our independent committee carefully considered all available evidence, including patient experiences and data from almost five years of real-world NHS use through the Cancer Drugs Fund.

“Sadly, this evidence shows the treatment does not work as well in clinical practice as it did in trials – with median survival of 2.5 years in NHS patients compared to four years in the original trials.

“We welcome the formal appeal and will consider the points raised through our established process. Patients who have already started treatment will be able to complete it and we would encourage anyone with concerns to speak to their medical team.

“There are other treatment options available and Nice is currently evaluating two further treatments, sonrotoclax and acalabrutinib, which could offer hope for this patient group in future.”