Fostering Age Inclusive Research (FAIR) Trials for Adolescents & Young Adults
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