On February 10, 2018, our 5th FAST seminar was held at the Senate, in Paris, in the presence of Agnès Buzyn, the French Health Minister, and under the High Patronage of Gérard Larcher, President of the Senate.
All the major players in pediatric oncology research were brought together – researchers, doctors, drug manufacturers, institutions, parliamentarians, parents’ associations – to discuss the latest advances in pediatric cancer research but also to warn about the remaining barriers to be overcome and to identify ways in which those advances can be accelerated.
Several families were also present to testify about the fight they had to lead against the disease. The mother of Martin, and the father of Robin, who passed away in 2017, shared their story, reminding us of the urgency to act fast.
Three main themes were discussed at the seminar and we made several concrete requests to move forward more quickly:
1. A review was made of advances in pediatric oncology research, demonstrating in particular that the way in which childhood cancers have been treated has changed significantly in recent years with the development of precision medicine which enables treatment to be adapted to the patients according to the molecular abnormalities specific to their tumours. This opens up many research possibilities thanks to all the molecular data generated by the sequencing of tumors.
In this context, we have made several requests:
- Establishment of a major European project of Big Data that would explore all genomic, immunological and clinical data generated to better understand childhood cancer
- Better investment in basic and trans-functional pediatric oncology research
- The implementation of new programs responding to the needs identified by the charities and physicians during the INCa Pediatrics (integrated cancer research program)
- Improved training and information for physicians to better communicate new approaches of cancer treatment (precision medicine) and enable more sick children to access open clinical trials and innovations.
2. Barriers related to French and European regulations and administrative procedures were raised. With the support of Unite2Cure’s European associations, we asked:
- The support of Agnès Buzyn, the French Health Minister, to obtain change of European Pediatric Regulations and its stricter application to industry to integrate pediatric cancers into their drug development strategy.
- The creation of a dedicated team dedicated to pediatric oncology at ANSM, which would become the European reference for clinical trials.
- The review of clinical trials by random draw among a limited number of POCs specifically trained in pediatric oncology.
3. Several concrete proposals were presented to advance research faster, improve access to care and improve long-term patient follow-up:
- The Grande Cause Nationale collective, which brings together doctors, researchers, research foundations and the main French charities and foundations, of which we are part, asks the government to make childhood and youth cancer a national priority.
- A common front against pediatric cancers bringing together patient and family associations, doctors, researchers and drug companies has identified 13 priority measures and asks the government as well as cancer study groups of the Senate and the National Assembly and MPs to integrate pediatrics into their priorities.
We must act quickly:
“The notion of time is not at all the same for parents whose child struggles daily with his illness.” Patricia Blanc, president and founder of Imagine for Margo
Even if the work we have done in the last five years allowed the lines to be moved, it remains insufficient and it is necessary to continue the fight to advance more quickly.
“Five years after the first seminar, the quantum leap is about being together, getting things done and doing things. We are together, we share, we design solutions and we are also able to implement them but we need resources to move forward, we must change the scale, together, to do more and do that better.” Gilles Vassal, Director of Clinical Research Gustave Roussy, President of ITCC
“We need to move forward. Research on childhood cancer must continue and intensify, it is a necessity, to identify new courses of treatment and also to reduce the undesirable effects and long-term effects of these treatments.” Agnès Buzyn, French Health Minister
Following this 5th conference, we will continue our actions to ensure that our requests are heard and that the means to advance research faster are deployed.
Count on our determination and our action!