Since the creation of Eva pour la vie in February 2012, we have, thanks to your donations, financially supported hundreds of families of sick children and research into pediatric cancers. We are also carrying out in-depth work with parliamentarians to obtain sustainable progress for research into childhood cancers and care, as well as better support for families of seriously ill children or victims of an accident or disability. Our work with the Grandir Sans Cancer federation has led to
several advances . But a certain number of issues, dependent on the choices of our political decision-makers, administrations and drug manufacturers, remain unresolved. We have worked on an inventory and realistic proposals on the following points, in order to obtain progress for all the children concerned, for their families ...
- The establishment of a real public policy for the development of pediatric drugs , particularly for cancers and serious childhood illnesses.
To date, these are generally considered a "restricted market, too unprofitable". Existing treatments are essentially based on the "luck" that they were first developed for adults, to then be (sometimes, years later) adapted to children. Over the last 15 years, NO drug has been developed as a first-line treatment for children with poor prognosis cancers. Only 16 anticancer drugs - all initially developed for adults - have been authorized for a specific indication of pediatric cancer, compared to more than 150 for adult cancers.
Unfortunately, most were for the treatment of malignancies that account for less than 4% of all childhood cancer deaths in Europe, including three drugs for melanoma and thyroid cancer – adult cancers that occur very rarely in children.
Logical consequence: the impact on the survival rate of children was almost zero, which did not prevent, through the European pediatric regulation of 2006, major manufacturers from benefiting from a certain number of rewards. For certain specifically pediatric diseases - such as brain stem tumors, which kill all affected children - it is essential to develop pediatric treatments as a first-line treatment, by exploiting the discoveries resulting from research (better funded by the State since 2018, but which is useless if it is not exploited at the therapeutic or preventive level) and by conducting a voluntary national policy on this subject.
- The implementation of a real public policy for the prevention of pediatric cancers and diseases , with the implementation of a precautionary principle whenever scientific publications raise a significant suspicion for the child or pregnant woman. This is the case, for example, for pesticides.
- Systematic research into the causes and origins of pediatric cancers , when a cause is not known, through biological and environmental samples and questionnaires for all parents concerned.
- Alignment of the AJPP (daily parental presence allowance) and the AEEH (disabled child education allowance) , both in terms of time limit (within 2 months maximum) and amount (revaluation to the minimum wage) for any parent forced, in view of the seriousness of their child's state of health or disability, to completely cease their professional activity. At the same time, support and the fight against social fraud would be strengthened.
- Reimbursement of scientifically recognized therapies , both in France and abroad, for disabilities as well as for cancers and serious illnesses, as long as it is prescribed by a doctor to improve the child's condition or their chances of survival. Objective: to achieve zero real out-of-pocket expenses, in order to ensure equal opportunities for all these children, regardless of the parent's income, and also to combat quackery.
- Support for accommodation near the hospital (parents' house or, if not available, private accommodation) for all parents who need to provide long-term care for their child with cancer or a serious illness requiring prolonged hospitalization. Some services do not have an accompanying bed. In addition, it is sometimes necessary for both parents to be present, or even the whole family, particularly in the most serious situations.
- Improving, in line with the Paul Christophe law passed in 2023, the protection of families in the face of mortgage loans, tax authorities or schools. Implementation of measures to relieve families of administrative procedures: simplification of the process of granting a disabled parking card, which could be done directly through the hospital when it concerns a seriously ill child, speeding up deadlines, etc. the notion of better recognition of social workers and healthcare professionals is also part of our objectives.
- Improving the conditions for receiving and treating hospitalized children , through the implementation of appropriate financial resources (for reception and food, which vary greatly from one service to another) and audits involving parliamentarians, doctors, associations and families.
- Improving the policy on the gift of life (blood donation, bone marrow donation, platelets, etc.), starting with schools by including these concepts in school learning, from primary to high school or even higher education. Hours of lessons related to health could be provided by teachers, specialized associations and health professionals. We also propose a set of levers for employees of French companies and administrations.
