Question 1411 — health

Summary

Mrs. Emmanuelle Anthoine draws the attention of the Minister of Solidarity and Health to the situation in which many children suffering from cancer and incurable diseases find themselves. Indeed, each year in France, 2,500 children and adolescents are diagnosed with cancer or leukemia, and 500 of them die from it (a figure which has hardly declined for around fifteen years, making it the leading cause of mortality of children by illness) is the equivalent of 20 school classes, often in severe suffering. However, less than 3% of public funding for cancer research is allocated to pediatric cancers, with the consequences that you can imagine: few researchers have the means to get involved in this work; many become discouraged or go abroad. The associations finance some projects, but they cannot all on their own. They hope that the remarks made by Mr. Macron on climate research (make our planet great again) will also be applied to cancers and incurable childhood diseases. Likewise, epidemiological studies, essential to try to understand the causes of these pediatric cancers and improve prevention, are rare. The previous cancer plan included measures essentially focused on schooling of children during illness, welcoming families, the right to be forgotten, and the doubling of clinical trials, which represent the last stage of research. For these trials to be effective, sufficient funding for biological and preclinical research should be guaranteed, in order to increase the chances of offering treatments adapted to the child's pathology. To this must be added all the children affected by other incurable diseases (“rare diseases”), and also disabilities. The Eva pour la vie association, which has carried out in-depth work with the support of families, researchers and other associations, supports the establishment of a law guaranteeing funding dedicated to research into childhood cancers and incurable diseases, as has existed since 1994 in the USA (Gabriella Miller Kids First Research Act). According to various estimates, the Missing funding for research on pediatric cancers amounts to around 20 million euros per year for pediatric cancers, and the same for rare incurable diseases: a sum that is almost inaccessible for associations. Furthermore, an increase in the daily parental presence allowance and its maintenance for the actual duration of the illness (compared to 310 days currently) would provide a breath of fresh air to thousands of families of sick children, faced with a double punishment (their child's illness and great financial insecurity). The improvement of reception conditions as well as the physical and psychological care of children within hospitals and incentives for blood, platelet and bone marrow donations should be strongly encouraged. Also, she asks him what are the measures that The Government plans to take rapid action in this area.

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