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Category Archives: DES Legacy
Victory for a DES 3rd generation victim : the pharmaceutical company condemned
June 09th 2011 marks a turning point in France for DES victims with a court verdict in favor of a DES Grandson who was born prematurely. This great news has been welcomed by the DES community and Action Groups from all corners of the globe. Fran Howell, DES Action USA Director, commented: “Louis’ win is a huge victory and around the world people are celebrating with him and his family“. We are all so happy for Louis and his mother Hélène.
Below is a translation of a Réseau D.E.S. France press communication - June, 10th 2011

Court case on DES 3rd generation - Versailles court of appeal
After a first judgement against UCB Pharma, the Appeal Court of Justice confirmed the first verdict on June 09th 2011 : 1,7 million euros damages are to be paid to Louis’ family.
Hélène was born in 1958. Her mother was prescribed Distilbène® during her pregnancy, making her one of the 80,000 French “DES daughters“. In 1990, during the 6th month of her pregnancy, Hélène gave birth to Louis, severely premature and suffering from important sequels : his handicap is assessed as 80% ; he can neither read nor write, moves in a wheel-chair and needs constant help. He is yet another victim of the drug Distilbène®… taken by his grandmother in the 50′s !
We share Hélène’s satisfaction and relief that the prejudice has at last been recognized by the Appeal Court to enable her family to live onwards. She can now sleep at night knowing that her son’s future is assured.
This decision is all the more important that it is the first time the the Appeal Court has judged a DES Distilbène® case concerning the 3rd generation.
This victory is consecutive to a well-prepared medical file which proves :
- a prescription of Distilbène® to Hélène’s mother
- that Hélène’s pregnancy was closely controlled because of her in utero DES exposure
- Louis’ medical follow-up was in conformity to the 1990 protocols
- that Louis’ condition has no other cause than his premature birth.
Finally, we are satisfied that the Versailles Court of Appeal confirmed the responsibility of UCB Pharma for their lack of diligence in commercializing Distilbène® on the market.
We again hope that this decision will bring a term to the difficult struggle for justice, started by Hélène in 2002.
In France, Distilbène® and Stilboestrol® (the commercial names for the diethylstilboestrol synthetic hormone – DES in abbreviation) was prescribed to 200 000 pregnant women to avoid miscarriages. 160 000 children were born from these pregnancies. For the “DES daughters”, the side effects are : sterility, miscarriages, premature births, cancers…
Sources: Article courtesy of Réseau D.E.S. France
Can the Mediator scandal lead to justice for drug victims ?
The drug Mediator remained on the market from 1976 until 2009 when the risk of fatal heart disease was known since the 1990s. French health experts now believe that Mediator developed for treating overweight diabetics, could have killed between 500 and 2,000 people before it was finally banned.
It stayed on the market despite a succession of warnings over its side-effects, which include heart valve disease and pulmonary hypertension. It was also hugely misprescribed, with doctors routinely handing out Mediator as an appetite-suppressant for people with common or garden weight problems.
A compensation fund was established by the French state for victims. But Mediator is not the first drug scandal!
Below is a translated article from Anne Levadou, President of Réseau D.E.S. France published in the Independant Web Newsletter “Rue 89″, June 08th 2011.
In order to avoid any major reform, the government is trying to convince us that the present Mediator scandal is the first major medical disaster. But let’s not forget that this is far from the first one : Thalidomide, Distilbène® came before Mediator… with every specific crisis, our society tries in the best of cases to find some specific reply. At the worst, to forget it.
Health precedents
The incoherence in dealing with health disasters leads to injustice and discrimination. The massive media coverage of the Mediator affair is parallel to the silence surrounding other victims. The denial of justice is not acceptable, for example, for the victims of Distilbène®, while this DES example is taught as a “model” of the mistakes not to be made.
Distilbène®, massively given to pregnant women until the 80s (1977 in France), has the perverse impact of not only affecting the women taking it, but even more affecting their children, and even grandchildren.
Let’s not forget also the victims of Lyell and Stevens-Johnson syndromes, rare reactions to drugs, leading to major damage to the skin and mucous membranes. It is inadmissible that all these victims – because their pathology is due to some other drug – should be “forgotten” and receive no compensation.
For the victims : a struggle against obstacles
Having no other choice, all these victims have to support, at their own costs and in media silence, years of personal procedures, medical examinations and cross-examinations in order to hope at the end to receive some recognition of the pharmaceutical company’s responsibility and some compensation for their injuries. At the issue, some discover that, because the risk was mentioned on the leaflet, that they have no legal recourse and their case is rejected.
However, as for Mediator, the serious effects have been proved. The permanent damages on health are the results of drugs or treatment approved by the official sanitary and political administrations and financed by the collectivity. Drugs represent an undeniable progress in our society, and the pharmaceutical industry contributes to the national wealth, but the serious side effects are in balance with the benefits made.
A “mutual pooling” of risks would be logical
Why not to-day, use the Mediator case to move towards a general response on the principle of global responsibility linked to the risks of taking drugs? The government must use this scandal as a lever to progress towards some definitive social solution to what is proved a collective risk.
The profits for pharmaceutical companies from the commercialization of a drug is assured by the solvency of the National Health Service which is itself financed by health insured tax payers. In the same way as professional risks, the costs of compensation for the victims could be automatically paid by the industries creating the risk. The mutual pooling of a collective risk, by the pharmaceutical companies concerned, would offer a double advantage : guaranteeing rapid compensation for the victims, but also, encouraging these companies to develop prevention measures.
The dissuasive effects of “class actions”
The Mediator scandal should also lead towards the possibility for victims to take collective legal action. The absence of collective procedures (“class action”) results in unfair personal struggles. While the victims of medical scandals are hoping for collective replies, why was this subject completely absent from the recent Drug Survey Symposium? It is certainly interesting to talk for hours about the code of ethics for drug representatives, or about providing doctors with updated information : whereas there would be an immediate auto-regulation effect from the sword of Damocles effect of “class actions” on pharmaceutical companies.
There is now an open choice : either our society offers a definitive response concerning the responsibility of drugs, or we will once again discover in a few years, or even in a few months, yet another drug scandal. As victims and citizens, we are expecting a wide-scale reaction and a truly political solution. Without this, Mediator will simply remain just another scandal.
Sophie Le Pallec, President of Amalyste association
Anne Levadou, President of Réseau D.E.S. France
Jean-Pierre Sueur, Senator of Loiret, France
Even though many French women have suffered from the devastating














