2023-06-19 15:23:53
How to get sickle cell disease out of the shadows, a blood disease that affects hemoglobin and manifests itself, among other things, by chronic anemia, very painful bone crises evoking a fracture, and an increased risk of infections. For a long time, it primarily affected populations originating from sub-Saharan Africa, the West Indies, North America, India, the Mediterranean region and the Middle East.
This hereditary disease is the most common genetic disease screened in newborns, but it is still unknown to the general public and also sometimes to health professionals. However, it is the only genetic condition whose incidence is continuously increasing: in 2020, 557 newborns were screened with major sickle cell syndrome (i.e. one child for 1,323 births). They were regarding 400 ten years ago, an increase of 44%. There are between 20,000 and 30,000 people with sickle cell disease in France.
Monday, June 19 at the National Assembly, on the occasion of the World Day for the fight once morest sickle cell disease, a collective of twelve patient associations presented a White Paper entitled “Our proposals for a national strategy dedicated to sickle cell disease” to Agnès Firmin Le Bodo, Minister Delegate in charge of Territorial Organization and Health Professions. At the end of the day, twenty-seven recommendations to improve the inclusion of patients and the overall management of the pathology. “We also want to remind Emmanuel Macron of his 2022 commitment”, emphasize Anouchka Kponou and Meryem Ait Zerbane, co-founders of the Drepacare association.
Read also (2022): Article reserved for our subscribers Sickle cell disease, the most common genetic disease among those detected at birth, will soon be screened in all newborns
In the health component of his program, the latter, then a presidential candidate, had mentioned the establishment of a detection and prevention plan for this disease. On November 15, 2022, the High Authority for Health had, in an opinion, recommended generalizing systematic neonatal screening for sickle cell disease along with five other illnesses. In the process, the Minister of Health, François Braun, announced that, from January 1, 2023, seven new diseases might be screened from birth and that “screening for sickle cell disease [sera] so widespread”.
“Inequalities of care”
This is therefore the first request of this White Paper because despite these promises, the decree has still not been published. If in Ile-de-France, more than 75% of children are screened at birth, they are only 45% in the rest of metropolitan France. Since 1984, systematic screening has been restricted to overseas departments and regions. And since 1995, there has been ethnic targeting. “But it is stigmatizing for these populations and anyway with the mixing, it no longer makes any sense. This disease is genetic and does not only affect black people., argues Anouchka Kponou.
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