The association has obtained the national agrees of the ministry!
The association is approved by the Ministry of Solidarity and Health - national approval.
I sent the approval request file since last summer. It was not until the first general meeting in February that the file was taken into account at the ministry.
The association had an appointment at the ministry in May 2019, obtained at the time thanks to Olivier Véran, then deputy and not yet minister.
Our file first passed in committee in early June.
I then had to be interviewed on June 18, 2020 by the CNA (National Approval Commission), chaired by M Gilles Barou, where I had to answer questions from 7 people, state advisers, honorary advisers and director at the CNAM, so that he can judge effective and public activity in favor of patients and health users.
There was talk:
- Of the national representativeness of the association
- Transparency of management
- Of the independence of the association
It was discussed if the condition of the three years of life of the association could not be required (the association was created in January 2019, therefore only a year and a half of existence).
It was recognized that the association "mainly ensures the defense of victims of an undesirable effect of a health product, the severity or the extent of this adverse effect was only known in the three years preceding the request for approval" that this health product is Androcur, Lotéran, Lotényl or any other progestogy which can cause meningiomas.
It has been verified that the association worked well in accordance with its statutes.
The law of March 4, 2002 relating to the rights of patients and the quality of the health system, modified by the law of August 9, 2004, provides an approval in order to allow associations fulfilling the conditions of representing users on public health issues and making proposals on health policies at national and regional level .
The AMAVEA association is honored by this new recognition of its work and the confidence granted by the Ministry of Solidarity and Health, thus opening up new perspectives in its involvement in improving the management of the persons concerned with this serious undesirable effect of drugs.
I would like to thank the two people without whom I could not have created the association:
Marine Martin , president of APESAC (Association of victims of Duskine) , which has always been an unwavering support and Nathalie Grillot , the first secretary.
Also thanks to all the neurosurgeons who help us and trust us.
A special thank you to Pr Johan Pallud , who has always been present to answer patient questions, bring his expertise and share his experience.
This approval is the recognition for all, the first at the level of the ministry , of the serious problem posed by these drugs, and of the sufferings that we have endured and still endors.
Our cause is right, and it is recognized!
We can only congratulate ourselves from all this work carried out by the active members of the association, by the members who support us financially and morally, throughout France (and even abroad!), By Master Joseph-Oudin and his collaborator Master Bruneau-Queyreix , all those who work in the shadows and that we would like to thank here for this formidable outcome, and relatively rapid, of our sufferings.
This approval also allows the association to potentially carry a group action (after validation by the board of directors). It is currently not our priority, the group action being in France not very effective in the field of health. For all that is legal procedure, see here.
Association approved by the Ministry of Solidarity and Health - National Approval
Publication in the Official Journal here
Emmanuelle Huet-Mignaton
