Clinical trials offer hope that one day we may save the thousands of young lives we lose to cancer every year in Europe alone. However, currently, many trials exclude patients under eighteen, though this age limit bears little relation to science, safety or compassion.
What are the consequences?
Delays. New treatments for conditions like lymphoma, only become available to adolescents years after they have been authorised for adults.
Ghost trials. Research into rare conditions becomes untenable because it is limited to a narrow age group, as has been the case with melanoma.
Ten years ago, my teenage daughter, Bethan, relapsed with an advanced form of cancer for which there was no effective treatment. In the final year of her life, not a single, relevant clinical trial was available for her to join. Sadly, this situation has changed little in the intervening years.
It is vital that more clinical trials are offered to young people and one immediate way we could do this is by removing arbitrary age limits. This is why I fight for FAIR Trials and why I ask you to join me.
Chris Copland – Parent Representative
As a paediatric oncologist, my main fear is of missing an opportunity that might benefit my patients by giving them a chance of either cure or control their disease. A patient with cancer not being able to access a trial just because he/she is under 18 has become unbearable.
I have listened to adolescents telling me, “Why have you prescribed this drug to my mate of 19 years old and you are telling me that I cannot have access to this drug without travelling miles away?”
“It will be too late for me if I have to wait for my 18th birthday to participate in this trial. It is in 5 months’ time. What can you do for me to get the drug?”
Parents echo their children’s thoughts too: “This is unfair. Just because of a silly age inclusion criteria, the access to this trial and drug is denied!” This has pushed me to take action.
The ACCELERATE platform offers a unique place to share, with no blame, no shame, all the issues perceived by the different participants in early drug development and we have found that solutions already exist as there is no real medical or legal hurdle. By working together, we can just do it… and we did!
We have reached a consensus where we all speak with a common voice to push inclusion of adolescents in early adult trials when medically justified (Gaspar et al. Annals of Oncology 2018). Since then the ACCELERATE FAIR trials group has moved forward to apply this in real life. The support of SIOPE and ITCC and their link with ESMO is of crucial importance. This is why it is so important for me to participate actively and chair the ACCELERATE FAIR trial group initiative along with a parent representative, Chris Copland of Unite2CURE and all the other stakeholders.
Nathalie Gaspar – Gustave Roussy