Just like Jericho

‘Just heard about this petition at the 3rd European Bone network Meeting. The power of people, patients and their advocates is the way forward to change this law and get access to new drugs for children/TYA with cancer... I hope I have set up a train of emails in my department for all my colleagues to do the same’

Bernadette Brennan, Consultant Paediatric Oncologist, UK

This is one of the thousand plus positive responses to the online campaign we ran during September, Childhood Cancer Awareness month. The idea was cooked up by five of us over the dinner table at the Childhood Cancer International conference in Sweden in May. Three months later, our website went live calling for ‘basic changes to European Law to speed up access to newer, kinder and potentially better drugs for more children and teenagers with cancer.’

E-petitions are of course ten a penny but our intention has been to use support garnered over September to demonstrate that there is a real desire for change within the childhood cancer community and to take this as ‘ammo’ when we push for reform of the Paediatric Medicines Regulation in the months ahead.

My belief is that the quality rather than the quantity of the support posted on the website gives our campaign its credibility. Major international networks like SIOPE and ITCC have signed up and, of equal value, grassroots organisations have recognised the relevance of the campaign to the ordinary families they represent. The big names of paediatric oncology have been willing to give their celebrity endorsement but what for me is equally telling are the messages from the carers and survivors of the desperate need for change.

Ida Borhan, Manager, Malaysia: “My daughter Irdina lost a battle no child should endure, let alone lose.”

 Krystal Jones Mother USA:  “Our children need a fighting chance! They need treatments that will work but without paying the cost of their lives from it. No parent should ever have to bury their child. There has to be a better way!”

 Fabrizio Allavena, Italy: “A child’s life is a piece of our future.”

 Debbie Jansen, USA: “Pediatric cancer needs to become an oxymoron.”

 Dragana Radulovic Parent Serbia We (NGO Chika Boca Serbia) believe: all children have unique needs and should grow up without illness. Access to the best possible care for children with cancer is their human right. Every child deserve the best possible treatment and care. One death is too many.

 Anne McLaughlin, Midwife, Australia: “No funding. No research. No CURE.”

 As the messages came in through the last weeks of summer, the reach of these small, unofficial networks into the childhood cancer community was demonstrated. An email to the Serbian punks at Radio Mladice generated a hundred signatures from across the Balkans. The mother of a boy who died of Ewing’s back in the 70s went on Italian radio and for the final week of September, our Wall of Support was plastered in Italian graffiti. 

Where do we take these messages? Well, we’ll be meeting members of the paediatric committee of the European Medicines Agency in November but our first stop was the Cancer Drugs Development Forum (CDDF) in London in the first week of October. CDDF are the platform responsible for knocking the Paediatric Medicines Regulation into shape and the two working group meetings there, though productive, included some surprising revelations. Until the dust has settled and we’ve made sense of what was said, I’ll leave reporting on where the process of reforming the Regulation now stands.