Eva pour la vie regularly intervenes with the French government and parliamentarians. Our requests relate to the funding of research on childhood cancer, support for families, prevention ... Eva pour la vie is behind several bills and amendments on these issues. But progress remains to be made.
- Research funding
The creation of a public research fund dedicated to childhood cancer, leukemia and incurable diseases, guaranteed by law. An additional fund of 15 to 20 million euros / year, allocated to research on childhood cancer, as well as an equivalent amount on other rare incurable childhood diseases would make it possible to finance projects on which needs are critical. First step forward: in 2018, the government (Ministry of Research) allocated 5 million euros per year for this research. But this insufficient sum only makes it possible to support too few projects.
- Help for families of sick children
We propose a law establishing a status of "protected parent" for parents whose child is diagnosed with a serious illness. Objectives: to provide specific protections in terms of employment, housing (rent, credit) and tax administration. The amounts of aid granted to families of sick children should be greater, and based on the actual duration of the child's illness. In 2021, we obtained the doubling of the duration of the AJPP (daily parental presence allowance), increased from 310 days to 620 days. A mission also demonstrated the need to provide assistance to families of sick children more simply, more quickly.
- Help for families of deceased children
We asked for the establishment of an automatic death benefit that would be paid to the parents in the event of a child death (3400 euros), as well as various protective measures for families having lost a child. In 2020, a law aimed at better supporting these families was passed unanimously, taking up several of our requests: death capital (2000 euros), maintenance of social assistance, protection against dismissal, psychological support ... https://www.legifrance.gouv.fr/jorf/id/JORFTEXT000041975976
- Reception conditions for hospitalized children
Set up regular independent audits in pediatric departments, in particular pediatric oncology, with the collaboration of associations and families of patients (systematic questionnaires actually used). These audits would make it possible both to help the nursing teams and to improve reception conditions (medical, food, etc.) and treatment of children.
- Bone marrow, platelets, blood donation
The Ministry of Research and Higher Education could participate in improving the policy of information and incentive to donate blood, platelets and bone marrow - by including these concepts in school learning, primary up to high school or even higher education. Hours of health-related lessons could be provided by teachers, specialized associations and health professionals. Similar actions can be envisaged within French companies, with facilities adapted to volunteers.