Three leading blood cancer charities have launched a formal appeal to reverse a decision that strips a potentially life-saving treatment from NHS patients in England and Wales. Blood Cancer UK, Lymphoma Action, and Anthony Nolan are challenging the National Institute for Health and Care Excellence's ruling to remove Tecartus, the only CAR T-cell therapy available for mantle cell lymphoma, a rare blood cancer affecting around 600 people annually in the UK.
Nice recommended against the treatment after evidence showed it did not deliver the same results in real-world NHS use as it did in clinical trials. The median survival for NHS patients was 2.5 years, compared to four years in the original trials.
The decision has immediate consequences for patients like Paul Madley, a 66-year-old consultant surveyor from Cardiff. Diagnosed with stage 4 mantle cell lymphoma in 2021, his cancer returned in July 2024. He began CAR T-cell therapy in autumn 2024 and achieved remission by March 2025. Madley expressed shock at the ruling: «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.»
Charities raise concerns
Blood Cancer UK's director of research, policy and services, Dr Rubina Ahmed, highlighted the limited alternatives available to patients. «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,» she said. The charity formally submitted an appeal, raising questions about how the treatment was assessed.
Emily John, a specialist nurse at Anthony Nolan, called the decision a backward step for NHS care. «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,» she said. She urged Nice and the manufacturer to find a solution to ensure continued access to the treatment.
Lymphoma Action's chief executive Ropinder Gill said the organization had received numerous inquiries from concerned community members. «There is now a lot of distress that this treatment could be removed as an option,» she said.
Nice responds to appeal
A Nice spokesperson acknowledged the distress caused by the decision. «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,» the spokesperson said. «Sadly, this evidence shows the treatment does not work as well in clinical practice as it did in trials.»
The watchdog welcomed the formal appeal and confirmed it will consider the points raised through its established process. Patients who have already started Tecartus treatment will be able to complete their course. Nice is currently evaluating two alternative treatments, sonrotoclax and acalabrutinib, which could offer future options for patients with mantle cell lymphoma.
Tecartus works by engineering a patient's own immune cells to kill cancer cells. It was initially made available through the Cancer Drugs Fund to gather more long-term benefit data for patients with relapsed or refractory mantle cell lymphoma over the age of 26.
Note: This article was created with Artificial Intelligence (AI).
