Fatima Ali, a contestant and fan favourite on Top Chef, a reality television show, sadly passed away in January after being diagnosed with Ewing’s sarcoma, she was 29.

Cancer in adolescents and young adults

Her untimely death has once again shone a light on a global subgroup of 1 million cancer patients, referred to as adolescents and young adults (AYA), who, as of yet, do not have a specific clinical pathway in oncology based on clinical-trial-supported data.

Patients ages 15–39, having transitioned from the end of childhood into adulthood but without joining the heavily studied “older patient” demographic, tend to get stuck in a treatment impasse, which has led to inferior progress in cancer survival compared with younger children and older adults for the past 25 years.

Data suggest that the poorer outcomes are due to three main factors: first, a difference in cancer biology and histopathology from the pediatric and adult population; second, late presentation and diagnosis, which may be due to an “invincible” attitude many AYA have towards cancer, or simply lacking time in their daily lives or adequate health insurance; and finally, a paucity of AYA data from clinical trials due to poor access and accrual on clinical trials and underrepresented tumor samples in national tumor banks.

Within the US, only 2% of patients ages 20 to 39 diagnosed with cancer in 2017 were enrolled in a clinical trial, in comparison with 50% of patients ages 15 or under. Ultimately, this lack of clinical data has prevented oncology teams from gaining insight into the effectiveness and side effect profiles of oncology treatments used routinely in this population.

To improve clinical outcomes, the barriers to trial access need to be rectified. This may mean lowering the inclusion criteria to include younger patients suffering from cancers that are more commonly seen in the adult population, such as genetically derived breast cancers, lymphomas and sarcomas.

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Conversely, in pediatric trials, the upper age criteria may need to be increased to allow patients in their early 20s to participate. This proposed change to inclusion criteria has been supported by the US Food and Drug Administration, the American Society of Clinical Oncology, the Friends of Cancer Research and the National Cancer Institute, and hence changes are likely in the near future.