In late 2021, I received devastating news. After years of fighting follicular lymphoma, which had evolved into the much more aggressive diffuse large B-cell lymphoma (DLBCL), I was running out of treatment options. I had already endured multiple rounds of chemotherapy and radiotherapy – each more gruelling than the last – only to watch as the persistent lump in my stomach held its ground. My doctors recommended one final treatment I’d never heard of before – CAR-T cell therapy.
When Dr Caroline Besley at Bristol Royal Infirmary explained to me what CAR-T was, I felt a mix of hope and fear. The science was astonishing: my own cells would be re-engineered to hunt down and destroy the cancerous cells. There were of course risks and potential significant side effects, but this treatment was my last hope.
In January 2022 my cells were extracted using a process called apheresis, in which a machine removes the required blood cells from the bloodstream, then returns the rest of the blood to the body. I then received the infusion of my genetically engineered cells in February 2022. The weeks that followed were challenging, as the physical and mental side effects of the treatment were intense. I was in hospital for weeks under the care of a wide team of specialists, undergoing endless scans and tests, and struggling with exhaustion. I suffered from common complications of CAR-T which caused brain fog and required close monitoring. But I made it through, and a few weeks after the infusion my medical team agreed to transition me to what is known as ‘ambulatory care’. I was discharged to a flat near the hospital for the further weeks of recovery, with my wife by my side as my caregiver.
The cancer and treatment turned my life upside down. My wife had to take time off work, leaving our children in the care of family members. The stress, the anxiety, the relentless demands of the treatment – it felt like we were fighting this battle on all fronts. Even after I was finally discharged home, I was still very frail and confused. My mind didn’t function properly – at one point I couldn't even recall what year it was. I was struggling to regain my strength, and I had to rebuild my life piece by piece.
Despite these challenges, I am lucky – the CAR-T worked. By May 2022, I was well enough to return to work. I had longed to rejoin the world, to step out of the shadows of my illness, but even now, I remain immuno-compromised. I’ve had to be revaccinated with all my childhood vaccines, and I still live with the reality that my immune system is fragile. This was made abundantly clear when I was hospitalised in late 2023 for seven weeks after contracting COVID-19. But I’m alive – and that’s something I’ll never take for granted.
Why equal access to new, advanced therapies matters
CAR-T saved my life. It destroyed my cancerous cells when I was an inch away from ICU. But as I reflect on my journey, I’m acutely aware that not everyone is so lucky. The reality is that patients’ access to and experience of CAR-T can vary widely depending on their location and background.
This isn’t just about my experience – it’s about ensuring that every patient has the best possible chance to survive and recover. Everyone should have the opportunity to access this lifesaving treatment without worrying about travel and hotel costs, taking time out of work, and the emotional impact on their family.
For starters, by setting up a national travel fund and making sure hospital transport is consistent, we can help patients avoid some of the stress and cost of travelling to access treatment. Expanding access to ambulatory care would also make patients’ experience more flexible and supportive, allowing them to receive care without being stuck in a hospital bed all the time, and have their family stay with them.
Just as important is making sure there’s proper support before, during, and after treatment, like prehab and psychological support. This would go a long way in helping patients and their families get through this tough journey. It’s not just about surviving, but about having the best possible quality of life afterwards.
I’ve got CAR-T to thank for being here today and I am incredibly grateful that the NHS was one of the first in the world to offer it to patients. But looking ahead, we need to make sure that this treatment is genuinely accessible to all patients, no matter their financial situation or where they live. My hope is that the new government builds a healthcare system that supports every cell therapy patient.
To find out more information about CAR-T cell therapy, visit: www.anthonynolan.org/cartcell