Question 52 — diseases

Summary

Mr. Aly Diouara draws the attention of the Minister of Health and Access to Care to the need to establish a national strategy to combat sickle cell disease, which constitutes an important public health issue. This blood disease, although little publicized, is the leading genetic disease in France and in the world. According to available national data, nearly 30,000 people are affected. With more than 500 new cases recorded in France each year, representing a 44% increase in the prevalence of this disease over the last decade, sickle cell disease is the only genetic condition on the rise in the country. Île-de-France and the overseas departments are particularly affected and concentrate the majority of cases. Sickle cell disease manifests itself through serious symptoms which are disabling and weigh on people from a very young age. the life expectancy and daily life of carriers of this pathology. Improving patient care requires in particular systematic and widespread early detection which, both for the sake of efficiency in detecting cases and in the fight against discrimination, must put an end to ethnic targeting. Despite the seriousness of this disease and the figures which should raise alarm, the management of the sickle cell disease remains poor in France. Sickle cell disease is still not the subject of systematic teaching in the curriculum of health professionals. This situation leads to significant disparities in the treatment of this disease depending on the hospital or region in which the patient is cared for and most of the time forces patients to go to the emergency room, requiring often untrained and untrained health professionals. helpless in the face of this pathology. For all these reasons, sickle cell disease constitutes one example among others of the health inequalities faced by many citizens. To respond to these shortcomings and beyond the social and territorial challenges that the management of this disease poses, it appears essential to establish an ambitious national strategy to combat sickle cell disease as demanded by the patient associations and professionals for many years. This strategy must aim in particular at the generalization of prenatal screening, the strengthening of prevention, as well as the improvement of research and training of health professionals around this disease to guarantee better care and thus better support carriers. As a deputy for Seine-Saint-Denis, territory particularly affected by this disease, it joins the numerous initiatives of patient associations and health stakeholders, brought to the attention of the Minister's predecessors (including a “White Paper for a national strategy dedicated to sickle cell anemia” written in 2023), who are fighting to bring this disease out of the shadows. It is also appropriate to remind the Head of State of his campaign promises to 2022, which notably mentioned the establishment of a detection and prevention plan relating to sickle cell disease so that it materializes concretely and does not remain a dead letter. Based on this observation, the MP remains available to the Minister to work together to improve the management of this disease in the country. He wants to know his position on the subject.

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