François Chartier is the spokesperson of the Association for the study and support of people affected by the malformations of limb(s) (Assedea), which brings together families of children born without an arm, without a hand or without a leg. For The Express, he delivers his conclusions on the discovery of eleven new births suspicious in the Ain. And list the measures that he would like to see implemented.
The Express : Public Health in France recently announced the discovery of new suspected cases in the department of Ain. How to interpret this information ?
François Chartier : there are two ways of seeing things. On one side it is very positive. One feels that there is an awareness of the public authorities, which trigger investigation and treat the matter with seriousness. On the other, the appearance of these new cases is interesting. Why did they not discovered before ? And why would these searches have not been initiated sooner ?
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Public Health France explained : from the moment we do not know the causes of these malformations, seek all-round would be to squander the public money ; it is better to assign budgets to other areas…
I understand, of course, that there may be budgetary constraints, but the amounts of money involved are not astronomical. It seems to me essential to know if the excess of cases do not exist in other regions, and to know the origin. Because obviously, if it is not, we do not find ! Failing to determine the precise causes of these anomalies, statistics, at least this would eliminate or confirm certain hypotheses, such as that of pesticides.
thank You so Emmanuelle Amar, the director of the Registry of the Rhône-Alpes region (Remera), have sounded the alarm?
Yes. If she had not provoked this media buzz, we wouldn’t talk as much in this case.
do you Think, like it, is that the authorities have attempted to stifle a scandal health ?
The expression “stifle a scandal” has a connotation of malicious that I do not want to resume to my account, as much as it is an assumption difficult to believe : several governments and several directions have been going on since the onset of the first case. I rather think that, as soon as these defects affect only a limited number of families and that the credits are restricted, this folder has never been identified as a priority. Perhaps it is this that is changing.
public Health of France noted that the discovery of new cases in the Ain is annoying for Emmanuelle Amar by questioning the “rigour” of the Remera whose mission was precisely to identify it.
Emmanuelle Amar has explained : the census is very complicated and some cases can pass through the meshes of the net. But our association does not wish to enter into the controversy. We want on the contrary that all relevant people are able to get around a table and work together. It is in the interest of the families. Perhaps the Remera he missed something, but rather than take the opportunity to tap him over, it would be better to know why and to draw lessons to improve the devices. This would be much more constructive.
What are your specific demands ?
We have three. The first is to co-ordinate existing registries in France, which cover approximately 20% of the population. The second aim is to create a national registry on of the entire territory. The third is that investigations are carried out when excess cases appear in some regions.
What would be the advantages ?
first, it is not really what we mean. It is said today that the limb defects affect approximately 150 families. Gold is not known with accuracy, since we just extrapolate the figures observed from the existing registries. Then, there would be progress in the search for the causes of these diseases. Finally, this would help to better inform and reassure parents as they have a lot of questions when one of their children was born with a malformation of a member.
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Babies without arms: a national survey “is being” Babies without arms: eleven new suspected cases in the Ain Baby without arms in the Ain: an eighth child identified
This happens, of course. When you do not know the origin of a disease, you ask, obviously: “Why should we ? What have we done wrong to arrive at this situation ?” In these cases, it should not stay alone. Myself, I have a small 4 year old daughter born with agenesis of the transverse of the left forearm. It is through the association that I have been able to be better informed and reassured. It is necessary to know, in particular, that most of the children grow up quite well despite everything. This is why it is necessary to develop research in this area.