Nathanael died at age 16 last October.
Suffering from an infiltrating glioma of the brainstem, an incurable brain tumour, he had no access to any medication in France.
In an attempt to extend his life expectancy, his father, Xavier Baio, did not back down from any obstacle.
After setting up an association, he managed to obtain in Germany a capsule made in the United States, far from being able to cure this cancer but which recorded encouraging results: it seems able to improve the life expectancy of some patients.
More than 35,000 new cases of pediatric cancers per year in Europe
Thanks to his efforts, the Gustave Roussy Institute was able to reproduce the active ingredient of this last-ditch drug.
A few days after Nathanaël's death, it was made available in France for patients experiencing treatment failure.
“We need more clinical trials in France so that there are more therapeutic choices, to give parents a little hope”, testifies today Xavier Baio, two days before the international day of the cancer of the child.
Every year in Europe, more than 35,000 new cases of childhood cancer are diagnosed and 6,000 children die from it.
Considerable progress has certainly been made in the field of pediatric oncology.
The child survival rate, which was around 30% in the 1960s, now stands at 80%, it was recalled last week during the first European Meetings of the National Cancer Institute (INCa) .
But childhood cancers are a “rare disease” compared to cancers in adults.
And the low return on investment resulting from the search for treatments for children does not encourage the players in the sector.
In addition, clinical trials involving children and adolescents are more difficult to conduct.
"It's been 15 years since the survival rate has increased"
“We now want to set up a clinical research platform at European level, which will in particular make it possible to carry out more robust clinical trials by integrating more patients”, explains to AFP Thierry Breton, the director general of the INCa.
In the coming months, a revision of the European regulation should also make it possible to “encourage laboratories to develop medicines dedicated to children”, he adds.
“We are at a key moment when pediatric cancers are at the top of the public policy agenda in Europe and in France,” rejoices Patricia Blanc, president of the “Imagine for Margo” association.
Since the death of her daughter from a brain tumor ten years ago, she has been fighting to advance research.
“There has been progress, but for years we have adapted adult treatments to children and it has been 15 years since the survival rate has increased,” she regrets.
Early detection of the disease, the other major challenge
On Saturday, during its annual symposium, the association initiated the signing of a charter by several players in pediatric oncology with a view to accelerating the development of new drugs, facilitating the sharing of data for research and improving the long-term follow-up of patients.
“In recent years, precision medicine has made it possible to better understand pediatric tumors and better target treatments, but children are still too often overlooked in research,” laments Patricia Blanc.
Today, the challenge lies not only in improving the survival rate but also in the early detection of the disease, the long-term follow-up and the quality of life of these children once they become adults.
Indeed, in 80% of cases, the diagnosis of pediatric cancer is made when it is already at an advanced stage, when this rate is only 20% in adults.
Two-thirds of people who have had cancer also live with the long-term effects of treatment, which can be serious.
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