2011 Archives - Diethylstilbestrol DES

01/09/201221/07/2017

DES Diethylstilbestrol reviews

Your reviews matter to us – Thank you to all those who took the time to share their feedback about “Journal of a DES Daughter”.

A friend recently asked me a question that I often asked myself before my husband and I started on our “DES activism” journey: is it worth the time, efforts and dedication? The answer is simple: YES! Why? Just read these reviews / testimonials by people affected by the DES drug tragedy in one way or another. We are so grateful to all those who took the time to write a review about our website and we are thrilled that people find my “Journal of a DES Daughter” informative and useful. Your kind words of support keep us motivated. But before you start reading you may wonder what Alexa is…

Selection of Reviews left by DES-exposed individuals

DES – what we should know

I am mostly moved by the reality that there are people unaware of their exposure and the potential adverse health effects of diethylstilbestrol. Many don’t make the link between DES exposure and the health problems they are facing and sometimes even doctors don’t make that link either. Wouldn’t you want to know?
by Nate – Aug 07, 2012

My Mom took DES, what did it do to my Sister?

I try to visit from time to time because my Mom took DES to not lose my sister when she was pregnant. I didn’t even know it until my sister told me. I was only 7 when Mom was pregnant and as a child you just want your Mom to be okay and the baby to be alright. My sister has had many health issues, her lupus may be related to this, no one really knows, but she has it in remission right now. I am angry that the patients were given a drug that could cause so many problems for the children and their children. I learn more from this site each time I stop by. Keeping up with the latest research and the lawsuits is unbelievable hard, but this site does it so well and in easy to understand language. What we don’t know is if my Mom took DES with all of us? Each of us has health issues that are very unusual, and it makes me wonder because she did have two miscarriages before she had us. She passed from Dementia, so we will never know.
by Michelle – Jul 28, 2012

Wonderful informative Site

The site is very informative on the issue of a drug being administered to pregnant mothers which causes all sorts of problems. When I found out it was put in milk and being a Londoner I was forced to drink the milk as part of the school program, I am disgusted. This issue needs so much attention and unfortunately it receives so little.
by Barry – Jul 25, 2012

Did your Mother take DES? It could be causing you Problems now

and one way to find out is to check out this site. I had not known that my mother took DES when she was pregnant. She decided to discontinue it and had very limited exposure. Nevertheless, my jaw dropped when I read the list of things that are common to DES daughters, since I had experienced four or five of them. Great information!
by Susan – Oct 15, 2011

The Heartbreak of DES

As someone who has first hand experience with the side effects of DES, I found this blog to be a wealth of information about the drug and its use. The fact is has such lingering effects we may not even know about yet, is disturbing at best. The blog’s writer effectively combines medical research and data with her own personal journey as a DES daughter and mother, who is concerned about the yet unknown effects this drug may have on her own precious daughters and their children. The travesty against woman and men of mothers who were given this drug, as well as their future children, is something the writer communicates with passion and compassion.
by Paula – Sep 03, 2011

When I started writing my “Journal of a DES Daughter” a year and half ago I never thought I would be able to reach out to so many people – not only to victims of the DES drug scandal interested in DES health issues but also to people who had never heard about what is often referred to as the “Silent Thalidomide“. Thank you for your continued support. Your reviews mean a lot to us.

06/10/201106/03/2019

New Study Suggests Lifetime Risk of Adverse Health Outcomes for DES Daughters

A study published on October 06th, 2011 in the prestigious New England Journal of Medicine tallies the risks of diethylstilbestrol related disorders among women whose mothers took the synthetic hormone during pregnancy, compared to others who weren’t exposed.

Breat Cancer Awareness pink ribbon image — New study suggests that women exposed to DES are 82% more likely to develop breast cancer after age 40

Among these health risks, the study suggests that women exposed to diethylstilbestrol, commonly called DES daughters, are 82% more likely to develop breast cancer after age 40.

Overwhelmed by the extensive media coverage that the publication of this study sparked in the USA, Canada, Australia and France but upset by the total absence of information in the UK, I contacted a health journalist at the UK Press Association to request for this information to be made available to the general public and widely shared and circulated in the UK press.

Given that October is Breast Cancer Awareness Month and 2011 marks the 40th Anniversary of the DES cancer link, I am hoping that my emails to the Press Association won’t go unnoticed and will grab the attention of UK journalists.

Findings of the DES Study

As part of this new study, researchers at the National Cancer Institute analyzed data from three separate studies that have followed more than 4,000 DES-exposed women since the 1970s. Compared with a control group of unexposed women, DES daughters were found to have higher rates of infertility (33% versus 16%), miscarriage (50% versus 39%), preterm delivery (53% versus 18%), and ectopic pregnancy (15% versus 3%). The DES-exposed women were also 82% more likely to develop breast cancer after age 40, and more than twice as likely to experience menopause before age 45. For most of the health conditions included in the study, the increase in risk was even greater for DES daughters who had been exposed to especially high doses of the drug.

“Our study carefully documents elevated risk for DES-exposed daughters for a host of medical problems — many of them also quite common in the general population,” said study author Robert N. Hoover, M.D., director of the Epidemiology and Biostatistics Program in NCI’s Division of Cancer Epidemiology and Genetics. “Without the sentinel finding of a very rare cancer in young women, and without the sustained follow-up of those who were exposed, we would not know the full extent of harm caused by DES exposure in the womb.”

Many of the potential health complications identified in the new study have been raised in previous research, in some cases with conflicting results. A 2010 study of DES daughters conducted in the Netherlands, for instance, found no link between exposure and breast-cancer risk. However a 2006 study had already suggested a higher risk of breast cancer in DES daughters. This year (2011), fifty-three DES daughters who developed breast cancer have brought a lawsuit against several DES manufacturers; the lawsuit is currently under way in Boston, USA.

What the study doesn’t mention is the health risks for DES sons. Despite the fact that women who have been prescribed diethylstilbestrol during pregnancy gave birth to as many sons as daughters, DES sons have once again been left out from a research study. Why researchers fail to include all those who have been affected, men and women? To me, we will never truly understand the extent of the DES tragedy if we don’t take a comprehensive and global approach to the problem. So even though, I welcome this study the need for more research remains obvious.

Situation in the UK

According to the support group DES Action UK who unfortunately is no longer active, more than 300,000 people in the UK (5 to 10 millions worldwide) have been exposed to diethylstilboestrol. So why countries like the UK fail to inform the general public about such an important study?

DES was prescribed to pregnant women in the UK between around 1950 and 1975, mainly to prevent miscarriage. This was despite the fact that research published in the American Journal of Obstetrics and Gynecology in 1953 revealed that women receiving DES suffered a higher rate of miscarriage. The synthetic estrogen was developed in England in 1938. It wasn’t patented and went on to be produced by more than 200 companies. In the UK, DES was known as Stilboestrol® and was sold under many brand names.

Yet, the DES tragedy remains largely unknown in the UK. Some British doctors have never heard of DES and there is only one dedicated clinic in Europe, based in Ireland. Many women are unaware that their infertility or cancer is a result of their mother having taken the drug. All of these women are not receiving proper medical treatment, or making truly informed decisions about their healthcare, as a result.

As a DES daughter myself I have reason to be interested in this new report in the New England Journal of Medicine that takes a thorough look at the heightened medical risks associated with prenatal DES exposure. And I am sure I am not the only one in the UK who feels the same. Despite overwhelming evidence of numerous health risks associated with DES exposure nobody seems to care in the UK. Media interest in the DES issues would definitely help to reach out to all those affected but unaware that their health problems may be related to Stilboestrol®.

The lack of UK media coverage on this new important study just shows how thick the wall of silence around the DES issues in the UK is. To share my experience and knowledge of this drug, I started this personal blog earlier this year for DES mothers, daughters and sons, and others interested in the DES issue. But this is a drop in the ocean. I need support from the media to reach out to people who may have been exposed. I sincerely hope the UK will show an interest in this study and will take on this opportunity to break the wall of silence.

18/09/201113/08/2017

2011 Historic DES Breast Cancer Court Cases

Boston, Massachusetts, USA where the DES cancer link was established 40 years ago, is making history again with the first DES Breast Cancer court cases on behalf of 53 DES daughters.

The lawyers at Aaron M. Levine & Associates law firm, after 50 years of successfully representing hundreds of DES daughters for infertility, vaginal and cervical cancer, and preterm delivery, have turned their attention to the risk of DES breast cancer in DES daughters.

Aaron M.Levine & Associates are the only law firm in America taking this focus and investment. They are currently representing DES daughters for their breast cancer injuries and are accepting new cases for review and evaluation.

The United States Center for Disease Control (CDC) and the most recent national study sponsored by NIH, (Palmer J, Wise L, Hatch E, et al. “Prenatal diethylstilbestrol exposure and risk of breast cancer.” Cancer Epidemiol Biomarkers Prev 2006;15(8):1509-1514.) concluded that DES daughters over the age of 40 are at a significantly increased risk for breast cancer.
In confirming the Palmer study in court as a valid and important reopening of the never-ending DES tragedy, Dr. Adami stated:

” so the bottom line of this is, it provides strong evidence that DES exposure increases the risk, and that the risk increase starts sometime around age 40 and then grows as women get older.”

Moakley Federal Courthouse Boston Massachusetts USA image — Historic DES Breast Cancer Court Cases at Boston Federal Courthouse (07 – 23 September 2011)

Diethylstilbestrol, primarily promoted by Eli Lilly and Company and E.R. Squibb & Sons (the predecessor to Bristol-Myers Squibb) was given to millions of pregnant women in the 1950’s and 1960’s and was contraindicated for use in pregnancy in 1971 when it was discovered to cause cancer and malformations of the reproductive tract. Massachusetts Governor Deval Patrick recently declared “DES Awareness Week” in July 2011 commemorating the experience of DES daughters and warning of breast cancer risks.

The trial taking place in federal court opened on September, 07th 2011 and continues until September, 23rd 2011 as the 53 DES daughters involved put on further biology, toxicology, oncology, and obstetrics and gynaecology experts to support Dr. Adami’s opinion of this substantial DES breast cancer risk in the daughters.

” There has been little press coverage and apparently little public attention. The chemical companies prefer it that way. It’s just two lawyers for the plaintiffs and about 20 lawyers representing the chemical companies in the court room! “

comments DES Info, a group created by several DES daughters as a way to proactively share information about Diethylstilbestrol.

Show your support for the Historic DES Breast Cancer Court Cases

The hearings are open to the public and support from the whole DES community is much needed.
If you can please:

Spread the word on your social media networks
Post your comments and messages of support on DES Info who is closely following and strongly supporting the historic DES breast cancer court cases
Respond to the DES Info call to attend the hearings especially on Monday 19th and Tuesday 20th September – The result of this hearing will be to determine if the first ever DES class action suit in the US will be allowed to go forward. There has never been one before, because a class action suit requires a commonality of injuries in the US.

The outcome of the historic DES breast cancer court cases in the USA will have repercussions not only in the USA but around the world as DES victims everywhere are struggling to get compensation for the devastating side effects of DES exposure.

My thoughts are with the lawyers, scientists and more importantly the DES daughters involved in the hearings. Somehow, they represent all of us.

The Boston Federal Courthouse is at:
United States District Court for the District of Massachusetts — Boston
1 Courthouse Way
Boston, Massachusetts 02210 – USA
(617) 748-9152

The hearings will likely begin at 9:30 a.m. and go until 4:30 p.m. each day, with lunch in between.

If you want any more information or feel you could help in any way, please contact Aaron M. Levine & Associates.

More DES DiEthylStilbestrol Resources

Other papers on DES cases and lawsuits.
Diethylstilbestrol DES studies by topics.

11/07/201113/08/2017

New AFSSAPS DES survey and update

AFSSAPS DES survey and update offices image — AFSSAPS offices - 2011 DES survey and update

Between 2010.09.10 and 2010.10.10, the National French Agency for the Safety of Health Products (AFSSAPS) conducted a DES survey aimed at assessing the knowledge of gynecologists and obstetricians regarding the complications associated with Dietylstilbestrol exposure as well as evaluate their expectations in terms of information campaign about this issue.
This survey was conducted in collaboration with the French National Federation of Medical Gynecology Colleges, the National College of French Gynecologists and Obstetricians, and the French Company and Gynecology Group for the Study of In vitro fertilization in France.

A total of 204 completed questionnaires were returned. Gynecologists who responded were generally aware of the consequences of DES exposure with 71% of them having at least one patient exposed to Diethylstilbestrol in utero.

AFSSAPS DES survey results

Analysis of the responses regarding the level of knowledge about DES exposure suggested that:

A majority of practitioners have an imperfect / limited knowledge of its consequences
Investigating DES exposure in situations which suggests potential exposure is not systematic
Genital anatomic abnormalities in boys exposed in utero are not well known by gynecologists
Knowledge of the risks faced by the third generation is very limited, yet it is important to continue monitoring these children to assess the multi-generational effects
The “memory” of the consequences of DES exposure is lost with the new generation of doctors
Recent data on the third generation is largely unknown
Almost half of the practitioners who responded requested a new DES information campaign

AFSSAPS DES update June 2011

As a result of the 2010 survey, AFSSAPS decided to publish a DES update aimed at DES exposed individuals and health professionals. The publication released in June 2011 emphasizes the gynecologists and obstetricians’ crucial role in recognizing DES exposure, informing their patients about its consequences and referring them to specialists for adequate care and monitoring. It also highlights the crucial role of DES patients in handing down the “record” of their exposure to the next generations.

The AFSSAPS 2011 DES update covers the following topics:

DES historical facts
Current issues
Risks associated with DES exposure
Breast cancer risks
Post adolescent psychiatric disorders – Later this year AFSSAPS plans to conduct a public hearing for experts to reexamine their facts on this matter.
Risks for the 3rd generation
How to screen DES exposure
Routine medical follow-up
Recommendations for fertility problems
DES pregnancy care

As a DES daughter and mother of 3 girls who may also be affected (only time will tell …), I really welcome these efforts from AFSSAPS and I believe this is a very important document which will serve as a reference for years to come. The results of the survey and the update are available to download from the AFSSAPS website in French. AFSSAPS is circulating this information through professional organisms to reach out to health professionals.

I sincerely hope AFSSAPS and the French government will follow through with additional efforts to spread the word, and reach out not only to all doctors, but also to the general public. With the recent Mediator scandal maybe AFSSAPS doesn’t want to make too much noise about the DES tragedy but at the end of the day it is our health and our children health which are at stake and we have the right to know.

AFSSAPS Downloads

English AFSSAPS DES report 2011 image — Download the 2011 AFSSAPS DES report

AFSSAPS DES report 2011 image — Téléchargez le rapport AFSSAPS 2011

The AFSSAPS DES Update 2011 was promised by one of their doctors who attended the DES conference in Paris in November 2010. It is very widely based on the Réseau DES France publication which followed the conference. It is an official text for gynecologists, obstetricians and doctors. The English translation has been coordinated by Réseau DES France and reviewed by Carol Devine (DES Australia NSW), Pr Tournaire and myself.

Thanks go to Pam Solere for her trust and encouragements.

01/07/201113/08/2017

Distilbène®: 20 Years of Legal Battle

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.

Even 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.

Sources: Réseau DES France, Le Point.fr

More DES DiEthylStilbestrol Resources

Other papers on DES cases and lawsuits.
Diethylstilbestrol DES studies by topics.

13/06/201113/08/2017

NEW: YouTube DiEthylStilboestrol’s Channel

In a bid to even further raise awareness about the DES issues, and help you find more (easily and/or faster) DES videos, we’ve created a new DES YouTube page.

YouTube diethylstilboestrol's channel image — NEW: find your DES Videos on YouTube DiEthylStilboestrol’s Channel

YouTube is an online video management and sharing application. Its primary goals are to help people make videos available to those who matter to them, and to enable new ways of organizing short films. It offers the perfect platform to share videos from around the world.

Playlist: DES Videos in English

YouTube DES Videos in English language playlist image — Find DES videos in English language re-grouped here

Easily find your DES videos in English language.
Original films (with original title, description & content) from five different YouTube users have been re-grouped here.
Diethylstilbestrol, Journal of a DES Daughter is NEITHER responsible for any of the content published, NOR trying to misguide web surfers on who the real video makers/owners are; their name being clearly mentionned.
Please contact us if you have other links or videos to share.
If you already have a YouTube account, click on Subscribe to be notified when new content is being added to this channel .

Playlist: DES Vidéos en français

YouTube DES Videos in French language playlist image — Touvez des vidéos en langue française sur le Distilbène® ici

Trouvez facilement vos vidéos en langue française sur le Distilbène®.
Les films originaux (inclus titres, descriptifs et contenu originels) de six utilisateurs YouTube différents ont été regroupés.
Le Blog Diethylstilbestrol, Journal of a DES Daughter n’est ni responsable du contenu publié, ni susceptible de vous induire en erreur sur l’identité des véritables réalisateurs des films; leur noms étant mentionnés.
Contactez-nous si vous avez d’autres liens ou vidéos à partager.
Si vous possédez un compte YouTube, cliquez sur S’abonner pour recevoir une notification si une vidéo supplémentaire est mise en ligne .

Join us:

We would like to invite all DES support groups and activists to collaborate to this project by contributing films to the new DiEthylStilboestrol’s YouTube Channel created and administered by Diethylstilbestrol, Journal of a DES Daughter. If you haven’t done it yet, you can also:

Join our facebook community; the perfect medium to share views, photographs and DES stories.
Follow us on twitter and keep up to date with everything this DES blog is doing.
Check out the DES Diethylstilbestrol Photostream and Map – if you already have a flickr® account, add us as a contact.
Subscribe to our RSS feed and receive new post notifications by email.

Help us break the wall of silence around the DES issues by joining these social networks and encouraging your friends to do the same.

10/06/201113/08/2017

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 image — 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

09/06/201113/08/2017

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

22/05/201113/08/2017

Flickr DES Diethylstilbestrol’s Photostream

In a bid to further raise awareness about the DES issues and reach a wider audience, we’ve created a new DES flickr page. It includes photos of DES events such as the recent DES Symposium at Massachussets General Hospital in Boston, DES adverts, pills, tablets and bottles, DES brochures and newsletters, DES graphs, press cuttings and much more.

flickr® is an online photo management and sharing application. Its primary goals are to help people make photographs available to those who matter to them, and to enable new ways of organizing images. It offers the perfect platform to share photos from around the world.
But flickr® is one of those ideas that depends on interconnectivity.

We would like to invite all DES support groups and activists to collaborate to this project by contributing photos to the new Diethylstilbestrol flickr page. By sharing as many images as possible we can create a comprehensive source of DES related photos and really show how far and wide the DES issues are affecting people’s lives.

By “Geotaging” the DES photos we can highlight on the DES Diethylstilbestrol Map where the DES community is taking action to break the wall of silence around the DES issues, as well as where the DES health concerns are being ignored.

Join us on flickr:

Check out the DES Diethylstilbestrol Photostream and Map
If you already have a flickr® account, add us as a contact.
Email your photos to info@diethylstilbestrol.co.uk with a short description and title.

DES Diethylstilbestrol flickr® page was created and is administered by Diethylstilbestrol, Journal of a DES Daughter.

If you haven’t done it yet, you can also join us on facebook and/or twitter. Our facebook community is the perfect medium to share views, photographs and DES stories. Follow us on twitter and keep up to date with everything Journal of a DES Daughter is doing.

Help us break the wall of silence around the DES issues by joining these social networks and encouraging your friends to do the same.