The importance of clinical trials for young people with cancer

Improve access to clinical trials to save young lives

A new Teenage Cancer Trust report published today warns that too many young people aged 13–24 are missing out on the chance to take part in clinical trials, leaving them unable to access innovative new treatments that could increase their chances of survival.

We’re now calling for the parliamentarians, policymakers, the NHS, regulators, pharmaceutical industry, researchers and other key stakeholders in the field to all work together with young people with cancer to improve access to clinical trial.

Kate Collins, Chief Executive, Teenage Cancer Trust, said:  “Cancer remains the largest disease-related killer of young people in the UK and every year 250 young people will have their lives cut tragically short, devastating families and communities across the UK.  

“To save or lengthen young lives, access to clinical trials must improve.  No young person should ever miss out on the opportunity to take part in a clinical trial simply because of their age, or because their specific needs are overlooked.  

“We hope in particular that the voices and experiences of the young people in our report are heard, and welcome any opportunity to work with policymakers, the NHS, pharmaceutical industry and researchers to increase access to trials.” 

Verity’s story 

Verity Barker, 23, from Bristol was diagnosed aged 17 and has a rare cancer called DSRCT sarcoma.  After hearing her cancer was incurable, she was offered a place on a clinical trial at the Royal Marsden Hospital in Surrey in December 2021.  But taking part was sometimes difficult, not least because she faced a five and a half hour weekly round-trip to take part. 

Verity said:  “It felt like a miracle when I got a place on the trial.  

“But to begin with it felt like science first, patient second, with several obstacles to get past, like the randomisation process determining which group you’d be in, which for me was very stressful.   

“The lack of choice for location meant even on my bad days where I didn’t have the energy, I still needed to make the journey.  At times I felt like a burden to my family who had to drive me which was an additional mental toll.  My care team were great and managed to get the trial company to pay for a taxi door to door, but it would have been so much easier to have been able to take part in the trial closer to home. 

“I spent two years on the trial, one of the longest participants, and for that period my cancer didn’t spread.  Everyone deserves a chance to benefit from this sort of specialist treatment.   

“I have met other young people with cancer who haven’t had the chance to take part in a trial, which I think is unfair.” 

Unfortunately, just before Christmas last year Verity heard that the cancer had spread and came off the trial.  Her team are now looking at other treatment options.   

Verity adds: “Knowing that by taking part in a trial I’ve helped other people is important to me. 

“And probably the best advice I’ve had is to stay alive as long as I can because by then more drugs might be available to treat it.”   

Rachael’s story

Rachael Turner (30) from Kirkcaldy in Fife, Scotland, was 15 when she was diagnosed with an aggressive giant cell tumour of the Clivus, a bone in the skull. Giant cell tumours are rare, aggressive, non-cancerous tumours, but in some cases these tumours can become cancerous.   She faced aggressive surgeries and other treatment, but the tumour kept coming back. Her movement and speech were affected and at one point she was having 20 seizures a day.    

Through their own research her parents contacted the professor running a trial of a drug called Denosumab in Birmingham, and after a referral and assessment, Rachael was accepted onto the trial in 2010.  

Rachael said: “After three months I had an MRI scan to check the effectiveness of Denosumab. The results showed that my tumour had shrunk by 1.4 cm. After nothing else had worked it was such a relief.  

“Another three months later I had another scan, my tumour was shown as stable. My left side weakness got better, my speech and my balance improved, and the number of seizures reduced.  Initially I was told that the trial would only be for one year. Then I was told that I would be able to stay on the trial as long as I was benefitting from Denosumab.” 

It wasn’t until 2016 that she was able to have Denosumab closer to home at the Teenage and Young Adult ward at the Western General Hospital in Edinburgh. Before then, she and her family had been flying to Birmingham and back every week to receive the drug, adding further stress to an already difficult experience.      

Denosumab has since been licensed for the use of giant cell tumours and Rachael is able to self-administer it at home.  If she stopped taking the drug her tumour would grow back.  

Rachael recently had a tattoo to commemorate the journey she’s been on and all the friends she met through Teenage Cancer Trust, including those who didn’t make it.  Her tattoo shows a syringe in place of the body on a butterfly, representing the drug that saved her life.   

She said:  “A clinical trial saved my life, which is why sharing my story to try and improve access to clinical trials for young people is so important. We have the rest of our lives ahead of us and shouldn’t be allowed to suffer because we don’t have access to the right drugs.”