“Following the release of the BBC Horizon Documentary “Teenagers vs. Cancer: A User’s Guide” at the end of June, issues surrounding cancer in young people have received a huge boost in profile within the UK media. Members of the FAIR trials group have been working tirelessly to ensure that these issues are reaching as many people as possible, and we’ve succeeded in getting articles about the documentary and FAIR trials in UK publications ranging from the Telegraph to the Daily Mail. Nevertheless, these articles have been the cause of some contention. Oversimplification of both language and content means that the complex issues within European Adolescent drug regulation are often hidden below the surface of unfair accusation in these articles. The question is, then, how we encourage coverage of these issues that is both positive and precise, whilst also being readable.
In Horizon, we heard the stories of 11 amazing young people who had been affected by cancer, each of them showing the immense difficulty and poignancy that the illness presents in our age group. Nick’s story of heart failure and sepsis following chemotherapy to treat leukaemia, or Yazz, who spent six months away from her home in Plymouth so that she could be treated in the teenage and young adult cancer centre in Bristol, show us that cancer in this age group presents unique and complex physical and social issues for patients. But what ran through the entire documentary is a sense of relentless optimism: Nick vists the Find Your Sense of Tumour summer camp for teenage and young adult cancer patients, and Yazz finds belonging in the CLIC Sergeant-funded Sam’s House. To parents and patients like myself, this optimism is entirely recognisable, but can be missed by the general public underneath the emotional weight of the patients’ experiences. The fundamental issue is that childhood and adolescent cancer does not make easy reading or watching. In his article for the Telegraph, Ben Lawrence titles the documentary as something that “strove to be cheerful” when in fact it simply was cheerful. We need to present teenage and young adult cancer more accurately, as the Horizon documentary did, through showing that as with all other age groups, life goes on for young people with cancer. By acknowledging that tone is as important as content in our coverage, we can show that, in the same way, positivity can be as important as the treatment itself in our disease.
Horizon also showed us the story of Chloe Binner, a sarcoma patient denied access to potentially life-saving treatments on an adult clinical trial because she was too young to be accepted. The issue was covered with great poignancy and care within the documentary, and it showed the vast importance of groups like Unite2Cure in resolving the issue of access to clinical trials for young people with cancer. By contrast, the headline-grabbing “Tragedy of children dying with cancer because drug companies won’t include them on trials” from the Daily Mail highlights the need for nuance and avoidance of inflammatory language in these articles. The article itself covers the main issues well and provides a good description of the problems we face at FAIR trials and the necessity of changing regulation to involve young people in adult clinical trials. With a monthly readership of 29 million people in the UK, the Daily Mail article is a huge step forward in the public dissemination of the FAIR trials group and Accelerate platform. But we must be clear about our work; we are not here to pass blame, we are here to solve a fundamental problem in European oncology, and we must recognise that as important as this article is, it may alienate the drug companies who we work with. The article is a great success, but we should learn that oversimplification even in the title often leads to inaccuracy.
Looking forward, the Horizon documentary and subsequent work in public dissemination is a huge success for the FAIR trials working group. We have gained a much greater reach to the public, and should aim to continue this trend with our work in the future. However, we also need to recognise that our subject is a difficult one: teenage and young adult cancer does not sell headlines, and so we are vulnerable to misconceptions and oversimplifications which exaggerate the truth. We must be more stringent in how we tackle our dissemination so that it is accurate for all involved in FAIR trials, from the patients to the clinicians and drug companies, so that we best represent ourselves on the national stage”.