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Teenage cancer patients will die because of trial age limits, charity warns

Teenage cancer patients will die because of trial age limits which prevent them from testing new drugs, a charity has warned.

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

The report found that young people often find themselves too old to take part in pediatric trials and too young for adult trials.

They also often suffer from rare cancers which pharmaceutical companies are unwilling to invest in because finding a drug for such a small number of people would not be profitable.

The charity is calling on all age limits on trials to be medically justified.

‘Tragically short’

Kate Collins, chief executive of the 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.”

When an age group has not been included in a trial, any use of drugs has to be off-label, even after they have been approved by the Medicines and Healthcare Products Regulatory Agency (MHRA).

However, doctors can be reluctant to take the risk because treatments can work differently during adolescence and there will be a lack of guidance on appropriate dosage.

Rachael Turner, 30, from Kirkcaldy, Scotland, was 15 when she was diagnosed with an aggressive giant cell tumour in a bone in her skull.

‘Increase access’

Giant cell tumours are non-cancerous but can become cancerous in some cases.

After having surgery and other treatments, Ms Turner’s tumours kept coming back, impacting her speech and movement and resulting in up to 20 seizures a day.

She was eventually accepted onto a trial for the drug Denosumab in Birmingham in 2010, which she said saved her life.

“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,” she added.

Ms Collins added: “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.”