Childhood cancers: meeting in Matignon - 02 févr. 2018

Were present at Matignon,

- Mr. Subirada, President of Grandir Sans Cancer
- Ms. Didriche, Vice President of the Sphères association and member of the board of Grandir Sans Cancer
- Ms. Adoum Douass, President of the Sphères association
- Dr Pasquier, PhD, CNRS researcher in Marseille.
- Ms. Menicacci-Ferrain, treasurer of Grandir Sans Cancer

The speakers shared the figures of this human tragedy. 2,500 new children and adolescents who start their fight against cancer each year, 500 of whom will lose it. This figure of 500 deaths has not fallen for 15 years, it is the leading cause of death from illness in children.

The speakers of Grandir Sans Cancer also recalled the unfortunate episode of the amendment presented by the deputy Benoît Simian, which received an unfavorable opinion from the government on the night of October 21 to 22. This refusal on the part of the public authorities led to the drafting of the Grandir Sans Cancer manifesto, co-written by associations and researchers, and signed by more than 70 associations and 100 researchers, oncologists and health professionals.

The following questions were raised:

- Is it normal that in our country, research on pediatric cancers is financed for the most part by associations of parents of children who have not survived their cancer for lack of treatment?

- Why do French researchers have to spend so much of their time looking for budgets?

- Will the government tackle this subject with the same determination as in the fight against unemployment or research on the environment or the development of Artificial Intelligence?

- The participants recalled the importance of having targeted research on children, with earmarked funding. It is not a question of taking from some in order to give to others, but of increasing the means for all. It is not a question of opposing adults to children, but of putting an end to this unbearable inequality without a single euro being withdrawn from the fight against adult cancer, or other pathologies.

We set out our strong expectations for this term to be radically different from the previous term. Let the French state become a leader on this subject.

Dr. Pasquier explained to the Prime Minister's advisor all the difficulty of working as a pediatric oncology researcher. Difficulties inherent in the research profession (50% of the time spent seeking funding rather than doing research) and difficulties specific to the field of pediatric oncology.

The speakers gave the report by Ms. Martine Faure, president of the parliamentary group on pediatric cancer until 2017, which supports the findings and recommendations that we share on 150 pages.

To know,
- 15 to 20 million for a public fund dedicated to research on pediatric cancers,
- 15 to 20 million for a public fund dedicated to research on incurable diseases of children,
- 15 to 20 million for social support for families (death benefit, AJPP).

As a reminder, the report of the parliamentary group chaired by Ms. Faure until 2017 as well as a document drawn up by the Federation Growing Up Without Cancer was also provided to Ms. Macron on December 21, 2017, and to around thirty deputies, some of whom met on September 13 at the National Assembly at the invitation of the deputy Amélie de Montchalin. Others having expressed their intention to support this cause at that time. Knowing that 65 deputies signed a letter for the attention of Ms. Macron to support a request for the Great National Cause in November.

Finally, the advisor was given several letters from member associations of Grandir Sans Cancer, as well as the book by Mrs. Marie Brevet, mother of Valentin, who also died of cancer, in terrible conditions.