Distilbène®: 20 Years of Legal Battle
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Distilbène® is the trade name for a synthetic hormone (also known internationally as DES or diethylstilbestrol) prescribed in France between 1950 and 1977 to pregnant women to prevent miscarriages. In 1977, 6 years after the U.S. Food and Drug Administration (FDA) advised physicians to discontinue prescribing diethylstilbestrol to pregnant women because of its link to a rare vaginal cancer, UCB Pharma (the manufacturer of Distilbène® in France) decided to make public that the use of this drug was contra-indicated in pregnant women.  It is estimated that 200,000 French mothers have been prescribed DES and have given birth to 160,000 DES exposed daughters and sons. The number of children whose grandmother were given DES during pregnancy (DES 3rd generation) is yet to be assessed.

DES lawsuit lawyer imageEven though many French women have suffered from the devastating side effects of Distilbène®, very few have understandably taken their case to court. DES trials are long, complicated, expensive and painful for the DES victims and their families. Battling in court against giant and powerful pharmaceutical companies is not an easy thing to do when you also have to deal with health issues such as cancer and infertility linked to your DES exposure.  According to Mrs. Martine Verdier, French lawyer who specializes in DES court cases, only 150 to 170 lawsuits have been initiated by Distilbène®’s victims over the past fifteen years. Until 2009, many DES daughters who had filed lawsuits against UCB Pharma and Novartis who respectively distributed Distilbène® and Stilbestrol-Borne® in France were unsuccessful because they were unable to produce the documents proving that their mum had been prescribed the toxic and carcinogenic drug diethylstilboestrol.

A few landmarks in the French DES legal battle history

1991:

  • First lawsuits against UCB Pharma from French women with genital cancers whose mothers had been prescribed Distilbène® during pregnancy (14 years after Distilbène® stopped being prescribed in France and 20 years after DES stopped being prescribed in the USA).

2002:

  • May 24th – Victory for two DES daughters. After eleven years of court battle, the Tribunal of Nanterre recognizes UCB Pharma’s responsibility in the cancer developed by two DES victims. They are granted 15,244 euros in damages. UCB Pharma makes an appeal against the court decision.

2004:

  • April 30th: The Court of Appeal of Versailles confirms the responsibility of UCB Pharma in the 2002 above cases.
  • The number of lawsuits increases. However the court decisions remain inconsistent because of the difficulties for victims to prove the link between their cancer and Distilbène®.
  • December 17th: The Tribunal of Nanterre condemns UCB Pharma to pay 310,000 Euros in damages to the family of a deceased DES victim before the end of the procedure.
  • December 21st: A women who has developed cancer is unsuccessful in Marseille. The court says she can not prove that her mother was prescribed Distilbène® so no link can be established. Yet her body affected by this rare vaginal cancer called adenocarcinoma, so typical of DES exposure, is the ultimate proof. She appeals.

2006:

  • March 08th – The Court of Cassation confirms the responsibility of UCB Pharma in the Marseille court case.
  • March 19th – Three women won their cases against UCB Pharma and Novartis, who had requested the cancellation of the court decision during an appeal in a view to request an expertise, arguing that the victims should have provided the original DES prescriptions.
  • October 13th – The Court of Nanterre condemns UCB Pharma to pay 344,000 euros to the family of a young woman who died of cancer before the end of her trial.

2009:

  • September 24th – Turning point – The Supreme Court reverses the burden of proof, forcing UCB Pharma and Novartis to prove that their product is not responsible for the health issues of the DES victims who are taking their case to court. It is a massive step forward in the history of French DES legal battles since it allows women not to be dismissed when they can’t show proof that diethylstilbestrol have been prescribed to their mum. The Court however, gives victims who can’t show the original drug prescription the opportunity to pursue either Novartis or UCB Pharma and claim for compensation. The pursued laboratory now has to prove that the victims did not take their drug, but the competitor’s. UCB Pharma distributed Distilbène® which was by far the main drug used in France whilst Novartis distributed Stilbestrol-Borne®. So it is expected that the battle between UCB Pharma and Novartis is going to be fierce. Novartis won’t want to share responsibilities and compensations costs when their drug’s sales represented only 2% of the market share compared to 98% for UCB Pharma.
  • The same year, the Court also condemns UCB Pharma to pay “compensation provisions” of 70,000 Euros to a young disabled girl of 12 and 60,000 Euros to her parents.

2011:

  • June 09th – First victory for DES third generation – The Versailles Court of Appeal confirms the decision of the Court of Nanterre made in April 2009 and recognizes a link between taking Distilbène® and disability in the third generation, giving the grandson of a woman who was prescribed Distilbène® 1.7 million Euros in damages.

I wish the decision of the Court of Appeal of Versailles will encourage other victims to engage in this legal battle but it takes more than courage to file a lawsuit for such a complex and difficult journey against what seems to be a lost battle. I really admire the victims and their families who took their DES cases to court and thank them, as well as their lawyers, for allowing justice to make progress not only for them but for many other victims who may consider going to court in the future.

Distilbène®: 20 Years of Legal Battle is just a quick overview of the main dates in the history of DES French lawsuits. These lawsuits won’t bring back the DES daughters who died from cancer to the families affected by di-ethyl stilbestrol. They won’t repair the long term damages of this toxic drug but if nothing else they show that DES is not something invented by the media, or something that DES exposed individuals, like myself, should feel guilty about. We are victims and we deserve that justice is made.

I am missing important information and this blog post doesn’t highlight enough the pain and suffering the victims and their families had to go through to seek justice and get compensation. If you are considering filing a DES lawsuit make sure you seek expert advice and professional support from your local DES Action group.

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Sources: Réseau DES France, Le Point.fr

Videos: DiEthylStilboestrol’s YouTube Channel

About Dominique “DES Daughter” Le Metayer

Activist, blogger and social media addict committed to shedding light on a global health scandal and dedicated to raise DES awareness.
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7 Responses to Distilbène®: 20 Years of Legal Battle

  1. Carol Devine says:

    Thank you for compiling this time line. Let’s hope there will be more success with legal recourse in Australia to enable an “Australian Time Line”.
    Carol Devine, DES Exposure Australia

  2. Gabriella says:

    Absolutely sinful that something so important could drag on this long.

  3. It is such a shame to have to fight so hard to get what is right and fair

  4. Zack says:

    So great of you to bring awareness to the public and be so open with your story. I’d never heard of this.

  5. Sarah says:

    I am a DES daughter – my mum suffered from breast cancer in her late 40s and survived, but no one ever mentioned to her the link between breast cancer & DES. I have checked on the Macmillan website and no mention is made of DES at all. I have e mailed the site to draw attention to this and hope that DES exposure will be more widely acknowledged in the UK.

  6. debbie y. says:

    I was born in the in paris, france in 1954, my mother was given des before I was born. In 2008 I was diag. stage 3 breast cancer and lost my right breast. I have had a number of health issues before this with repro. problems and early menopause also. I am now living in the USA and trying to understand how to sort through what has happened to me. If any info you may have pls. Let me know. Thank you, Debbie

    • DES Daughter says:

      Hi Debbie, thank you for your comment. I would suggest you contact DES Action USA or Reseau DES France. They will be able to provide you with professional advice and guidance.
      Best regards,
      DES Daughter

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