Sickle cell disease, a genetic disease that causes serious difficulties on a daily basis, is about to be screened in all French newborns, and no longer just overseas, under the terms of the bill presented Thursday, October 27 by the executive on social security.
“On an experimental basis, for a period of three years, the State may authorize the performance of neonatal screening for sickle cell disease on a systematic and compulsory basis.announces an amendment incorporated by the government into the social security financing bill.
Hereditary illness
This provision was not in the initial draft. But the government added it on Thursday after ending parliamentary debate on this text via 49.3. Sickle cell disease is an inherited blood disorder that affects red blood cells. It is manifested by, among other things, anemia, painful crises and an increased risk of infections.
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It is one of the most widespread frequent diseases in the world, especially in Africa. In France, it is rarer but affects nearly 30,000 people, according to government figures. Birth screening is a crucial issue, because it allows immediate treatment to be initiated to alleviate symptoms and avoid complications.
“vital emergencies”
These “are multiple and can be life-threatening emergencies: frequent infections, retarded growth and development, syndrome of painful swelling of the hands and feet, eye pain that can go as far as blindness, acute chest syndrome, stroke, organ failure , etc“, underlines the government in a commentary to the amendment.
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However, at the present time, screening is only generalized in the overseas territories. If it is definitively adopted, at the end of the shuttle of the text of the law with the Senate, the amendment will make it systematic in mainland France.
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This measure, the terms of which would be ratified by a decree, will be limited in time – three years – and then may be extended indefinitely if it is deemed conclusive. “At the latest six months before the end of the experiment, the government submits(will) Parliament an evaluation report, which decides(will) in particular on the relevance of a generalization», specifies the amendment.