Stem cell charity Anthony Nolan has published the first national research study exploring the experiences of adult patients and carers undergoing CAR T-cell therapy.
The report reveals a significant lack of financial support for adult CAR T-cell therapy patients, many of whom travel extremely long distances for their treatment and require prolonged time off work, leaving them out of pocket by thousands of pounds.
The publication of this report comes just weeks after the launch of the National Cancer Plan for England. Whilst the government has pledged a £10million travel fund for young people with cancer, no commitment has been made to adult patients. Anthony Nolan says its report highlights why funding must be extended to cell therapy patients of all ages and all disease types.
CAR T-cell therapy uses cells from a patient’s own immune system to fight cancer and can be a lifesaving option when other treatments have failed. While it has transformed care for some advanced blood cancers, the process is complex and intensive, often taking many months to complete which means patients can face significant financial and mental health challenges.
From interviews with 26 patients and nine caregivers, the research reveals four key areas where the CAR T- cell therapy treatment pathway could be improved:
- More financial support
- Access to more tailored information about CAR T- cell therapy
- Improved patient facilities
- Better mental health support
The study found that in the lead-up to admission, most patients are required to attend hospital appointments two to three times a week, often across two or three different hospitals. Patients are frequently expected to coordinate their own care between sites and rely on family members or carers to accompany them to appointments.
There are just under 30 CAR T- cell therapy centres across the UK. Data from three centres in England showed that more than half (54%) of patients travelled more than 50 km to access treatment, with one in four travelling over 100 km1.
Anthony Nolan offers patient grants of up to £500 to provide crucial relief for patients and their families, with travel costs consistently the most common request in grant applications, making up a third (33%) of all grants provided in the 2024-25 financial year.
In addition to travel costs, many families experience a significant loss of income, as patients and carers often reduce their working hours or stop work for several months during treatment and recovery. Research from Anthony Nolan shows that households can lose an average of £30,000 in income during cell therapy treatment.
Yasmin Sheikh, head of policy and public affairs at Anthony Nolan, said: “We hear every day from people undergoing cell therapy about the severe financial strain caused by travelling for treatment. Travel costs are consistently the most common reason people apply for an Anthony Nolan financial grant.”
“Families should not have to rely on charity for support when they are at their most vulnerable. Therefore the government’s new travel fund for young people, set out in the National Cancer Plan, is very welcome - but this needs to be extended to all CAR-T and cell therapy patients, so no one is left struggling to access the treatment they need.”
Claire Evans, who was diagnosed with acute lymphoblastic leukaemia in June 2015 and received CAR T-cell therapy in 2019, said: "I was in hospital for about a month after the treatment and for my follow-up appointments, I was expected to make my own way there - that’s when you start worrying about costs."
“My immune system was so frail that I couldn’t get on busy trains and buses in rush hour, so I had to travel the day before treatment to not tire myself out. That meant staying in central London, which is pricey, even if you stay at a cheap hotel.”
“I was lucky that my employer was good - they gave me nine months full pay and six months at half pay. The difficulty was when I had a gap between my sick pay finishing and me finding out about Personal Independence Payment (PIP). I had about five months with no money coming in. Then even with PIP, it’s just not enough to pay my bills and all the extra costs that add up when you’re having to get to hospital regularly. My electric bill has more than doubled.”
Anthony Nolan is calling on the government to widen the National Cancer Plan’s travel fund so that it supports cell therapy patients of all ages and all disease types.
To read Anthony Nolan’s CAR T- cell therapy patient experience report in full visit: https://www.anthonynolan.org/what-we-do/influencing-change/being-a-voice-patients/CAR-T-patient-experience
References:
- Dragoi D, Cusworth S, Oldham L, Sanderson R, Norman J, Chandan JS, et al. CAR T access and outcomes in large B-cell lymphoma according to ethnicity and socioeconomic deprivation in the UK. Br J Haematol. 2025;206(4):1178-85. Epub 20250116. doi: 10.1111/bjh.19997. PubMed PMID: 39821591.