Call for cancer treatment to be available on NHS

Jason Johnson is in remission from blood cancer after taking part in a clinical trial

A father-of-two who is in remission from cancer is calling for the treatment which helped him to be made available on the NHS.

Jason Johnson was diagnosed with myeloma - a form of bone cancer - in 2014. He was given five years to live but his cancer is now undetectable after he received CAR-T therapy in a clinical trial.

The treatment uses a patient's own blood cells to fight cancer and Mr Johnson, from Melksham in Wiltshire, is campaigning for it to be made widely available.

The NHS says it already offers some CAR-T therapies and is consulting on "potential future treatments".

Only this week, the National Institute for Health and Care Excellence has recommended the use of another CAR-T therapy called liso-cel, for treatment of the blood cancer lymphoma.

However, the CAR-T treatment Mr Johnson went through is called cilta-cel, to treat myeloma.

Mr Johnson was 39 when he was diagnosed with myeloma. While it can be managed with treatment, the disease is incurable and kills about 3,000 people every year in the UK.

Mr Johnson first went to his GP after experiencing a stiff neck and a feeling that his chest "popped" when he touched it.

Jason initially went to the doctor complaining of a stiff neck

Doctors discovered the cancer was eating away at Mr Johnson's bones and, two weeks after his cancer diagnosis, a vertebrae in his spine collapsed and he was found to have multiple fractures in his chest.

"It was a bit of a shock," he said. "It was surreal.

"With blood cancer you can't take a tumour out. It's just there and you know it will come back."

After nine years of radiotherapy, chemotherapy and stem cell transplants, Mr Johnson was accepted onto the clinical trial and, 15 months later, is in remission.

"Until this treatment, I had never been in remission," he said. "Now they're saying it's undetectable. I never thought when I was diagnosed more than 10 years ago that I would ever get to this point. It feels surreal after all this time."

Jason (centre) and his friends celebrating after his cancer became undetectable

He has now teamed up with charity Myeloma UK to call for greater access to new treatments on the NHS.

"There were 11 people in the trial in the whole of the UK and I know other people weren't as fortunate," Mr Johnson added.

"I want to give people hope and put pressure on the system to get this treatment where it needs to be."

Mr Johnson's recovery is ongoing but he said he is in the "best place" and is due to marry his girlfriend of five years, Laura, in 2026.

How does CAR-T treatment work?

CAR-T treatment uses the body's immune system by collecting a patient's T-cells - a type of white blood cell that fights off disease - and genetically modifying them so they can recognise and kill myeloma cells.

The treatment Mr Johnson had is only available privately.

Myeloma UK's director of research and advocacy Shelagh McKinlay said "there should be no financial barriers to accessing treatments".

"Until we have a cure, Myeloma UK will continue to make the case for reducing the barriers to accessing clinical trials and fighting for all patients to have as many options as possible to keep their cancer at bay," she added.

Three CAR-T products are available on the NHS, with 1,500 patients treated through the public healthcare system to date.

NHS England's national clinical director for cancer Peter Johnson said: "The NHS continues to take great strides forward in cancer care and we have already made a number of cutting-edge CAR-T therapies available which offer hope for hundreds of patients with blood cancers."

"The work of clinical trials is ongoing and we continue to consult with NICE (National Institute for Health and Care Excellence) on potential future treatments available on the NHS."

What are the symptoms of myeloma?

Myeloma is an incurable blood cancer that occurs in the bone marrow. It affects more than 24,000 people in the UK.

Symptoms can include:

• Persistent or unexplained pain for more than four to six weeks, particularly in the back or ribs

• Easily broken bones or unexpected fractures

• Frequent or minimal to no urination

• Frequent or lingering infections

• Swollen legs or abdomen

• Fatigue that does not lift with rest

• Unexplained nosebleeds or bruises

• Unexplained shortness of breath

• Unexplained weight loss

• Numbness in the hands, feet, or legs