"I said to myself, it's too bad luck," sums up Marine Martin, 44, whistleblower on the Dépakine scandal. This mother has become the symbol and spokesperson for all the victims of this anti-epileptic drug responsible for the physical and autistic disorders of thousands of children. With its Association of parents of children suffering from anti-convulsant syndrome (Apesac), it revealed its intimate history and blew up a huge health scandal. And won a new battle Tuesday evening: the National Assembly gave the green light to the creation of the compensation fund.
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Autistic deformities and disorders
For her 10 years, Marine has been fighting against her epilepsy by taking Dépakine every day. Even during her two pregnancies. In 2002, his son Nathan was born with a limb malformation. "No worries," say the doctors to the parents.
Little by little, they notice that "everything arrives late," summarizes Marine. When he is 2 years old, I am confirmed that it is not a delay, but troubles. And when I am told that he suffers from significant autistic disorders, I begin my research. "
Looking at the work of a professor on malformations linked to pesticides, she wonders: "I am not the daughter of farmers ... on the other hand I am epileptic and therefore I took medication. Looking alone at my computer at the list of the most dangerous drugs for pregnant women, I start to cry: Dépakine, my antiepileptic drug, comes in second position. "
After this blow, Marine did everything so that her son could follow a normal education. “At 6 years old, he didn't speak. But it was thanks to reading that he understood the cutting of words. Each time he moved into the upper class, it was a victory! "
Dépakine: The Assembly gives the green light to the creation of an compensation fund
Mediator, an example
It was in 2010 that the idea of attacking the Sanofi laboratory, which markets depakine, germinated while knowing, according to Marine, for years that this antiepileptic drug is very dangerous for pregnant women.
"I then met a mother in the same situation as me in Tours, who had just lost her lawsuit against Sanofi, resumes Marine. I understood that it was not easy to attack a large laboratory. We were then in the middle of a Mediator scandal. I saw Irène Frachon, this pulmonologist struggling while she was not touched in her flesh. She was a real example for me. "
Another source of inspiration: a British association which has been fighting since 1999 against this same molecule.
But it was in early 2011 that Marine launched into a complex and long fight. “I remember that on the night of January 1, I dreamed that I witnessed a rape without doing anything. This was the trigger, I could not let children be born under Dépakine while I knew the risks. But I told myself that I needed a lawyer specializing in medical law to lead this fight. "
She seeks Charles Joseph Oudin, lawyer for the victims of the Mediator. Who agrees at the end of 2011 to defend it.
“It is no longer the combat of Marine Martin but that of thousands of families. "
Today, Apesac has 2,000 families. "If I called the association thus and not" Nathan's fight ", it is so that everyone can find their way around," argues Marine Martin.
“She started from nothing and managed to persuade so many families, salutes Sophie Jouslin de Noray, one of her lawyers who has defended her since 2011. It is not easy to convince these mothers to put their whole story on the table, to find all the medical files, to pay the expert opinions which cost about 15,000 euros while these families already have heavy burdens to help their disabled children. "
>> Read also: Dépakine. How many victims will the anti-epileptic drug really cause in France?
"This victory is saved children"
Since then, Marine Martin can take pride in having won a few battles. In October 2014, European law changed, and France applied European recommendations.
From now on, Depakine will only be prescribed as a last resort and patients who wish to become pregnant will be informed: 40% of risks that the child presents developmental delays, malformations and neurological disorders.
“This victory is saved children. When we got the IGAS to conduct an investigation, it was a second showdown, ”smiles the young woman. Even if it took a punch on the table and wait a long time before politicians relayed his concerns. “When I finally met the cabinet of Marisol Touraine in February 2016, they understood that this Dépakine scandal was a real nuclear bomb. "
Compensation, a halftone victory
So that's for sure: the victims will be compensated. Initially, it is the State which will pay these compensations to the victims, then it should turn against Sanofi. A halftone success.
"This will prevent the victims from waiting months and enduring three or four refusals from the laboratory," explains Marine Martin. But it upsets me, because it is not the taxpayer to pay. The person in charge is the Sanofi laboratory, which has made huge profits on a drug that was also reimbursed! I will make sure that the state demands accountability from it. "
In the meantime, this aid should partially relieve these families. "I hope this will allow my son Nathan to have a third person to help him all his life. I do not know what will be its degree of autonomy. "
His new challenges
And the energetic forty-something will not stop there. She is mobilizing so that a standardized logo on the boxes alerts pregnant women to the dangers of certain drugs. "Similar scandals, there are surely plenty, decides the mother. This adventure showed me to what point an in-depth reform of pharmacovigilance in France is necessary. "
During these years of research and battles, Marine Martin gave up on one of her projects: having a third child. “I cannot do without anti-epileptic treatment. And I don't trust other drugs. "
- Health
- Depakine
- Drug