Because Social Media increases Awareness and brings the DES Community Together
Edited extract from “Bad Pharma”
Pharmaceutical companies deliberately mislead doctors into prescribing useless and even harmful meds ” which contains a long excerpt from Ben Goldacre‘s forthcoming book, Bad Pharma: How drug companies mislead doctors and harm patients…
Where are the lessons learned from the DES drug tragedy?
Ben Goldacre, author of “Bad Science”, puts the $600bn global pharmaceutical industry under the microscope http://ow.ly/fc05c via @des_journal
Back in the 1950’s and 1960’s, doctors were the target for most drug advertising campaigns including DES
Back in the 1950’s and 1960’s, doctors were the target for most drug advertising campaigns including DES as shows this Flickr album.
Drug companies supplied hundreds of doctors with samples to give to their female patients, thus creating a market for the drug (in the case of diethylstilbestrol even before it was approved by the FDA).
Somehow DES set the template of “How To” market a dangerous drug to women. In 1948, diethylstilbestrol was advertised as the “Wonder Drug” recommended for all pregnancies. The face of a cherubic infant grinned up from the pages of medical journals next to the caption: “Really? Yes, desPLEX to prevent abortion, miscarriage and premature labor…bigger and stronger babies“.
As early as 1953, research revealed that DES did not work – that DES actually brought about higher rates of premature birth and infant mortality – yet DES continued to be prescribed to pregnant women for decades mainly because pharmaceutical companies continued to heavily promote DES use to doctors and most doctors relied on the drug companies and their sales representatives for information.
About chemicals that, at certain doses, can interfere with the endocrine (or hormone) system in mammals
The Flickr “DES Research” photo set features a selection of graphs, stats and the 2011 AFSSAPS DES survey report from France about the adverse effects of Diethylstilbestrol, the synthetic oestrogen prescribed to millions of pregnant women around the world decades ago in the mistaken belief that it would reduce the risk of complications during pregnancy.
A selection of press cuttings from around the world about the adverse effects of Diethylstilbestrol
The Flickr “DES Press Releases” photo set features a selection of press cuttings from around the world in English and French about the adverse effects of Diethylstilbestrol, the synthetic oestrogen prescribed to millions of pregnant women around the world decades ago in the mistaken belief that it would reduce the risk of complications during pregnancy.
Not just public health books but real stories of a tragedy experienced by million of men and women…
The Flickr “DES Books” photo set features front cover images of a selection of books and publications in English and French about the adverse effects of Diethylstilbestrol, the synthetic oestrogen prescribed to millions of pregnant women around the world decades ago in the mistaken belief that it would reduce the risk of complications during pregnancy. Below is a short introduction presenting these books:
BOOKS AND PUBLICATIONS IN ENGLISH
Toxic Bodies: Hormones Disruptors and the Legacy of DES – Author Nancy Langston, published in 2011
In this gripping exploration, Nancy Langston shows how these chemicals have penetrated into every aspect of our bodies and ecosystems, yet the U.S. government has largely failed to regulate them and has skillfully manipulated scientific uncertainty to delay regulation. Personally affected by endocrine disruptors, Langston argues that the FDA needs to institute proper regulation of these commonly produced synthetic chemicals.
AFSSAPS DES Report – Author French Agency for the Safety of Health Products (AFSSAPS), published in 2011
As a result of a survey conducted in 2010, AFSSAPS decided to publish a DES update aimed at DES exposed individuals and health professionals. The publication 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 report is available to download in English and French.
Origins, How the Nine Months Before Birth Shape the Rest of Our Lives – Author Annie Murphy, first published in 2010
The book’s most chilling section involves the tragic results of thalidomide and diethylstilbestrol (DES), two drugs from the 1950s that were “given to pregnant women in the belief that the fetus would be unaffected.” Ms. Paul reveals six decades later: “It is evidence of the evolving state of our knowledge that the mechanisms by which these substances do their damage are not completely clear, even now.”
DES Voices, From Anger to Action – Author Pat Val Cody, published in 2008.
“Take a new estrogen promoted by the pharmaceutical companies. Add doctors ready to believe in another miracle drug. Take post-World War II women desperate to have a baby after miscarrying. Continue prescription for years. The result is the tragedy experienced by million of DES-exposed mothers, daughters, and son – and perhaps grandchildren. This is the story of what they did about the drug disaster that changed their lives.”
DES Stories, Faces and Voices of People Exposed to Diethylstilbestrol – Author Margaret Lee Braun, Theo Colborn and Nancy M.Stuart, first published in 2001
A tribute to the millions of lives upended by exposure to DES, diethylstilbestrol, synthetic estrogen, toxic chemical, and carcinogenic prescription drug. In photographic portraits and interviews, DES daughters, mothers, and sons tell, in their own voice, what it’s like to be DES-exposed. Today the DES story continues to unfold as research brings new findings to light. DES Stories rings with daring honesty—and points to broader concerns about the effects of endocrine-disrupting chemicals.
To Do No Harm: DES and the Dilemmas of Modern Medicine – Authors Dr. Apfel and Dr. Fisher, first published in 1985
In this important book, Drs. Apfel and Fisher demonstrate how explosive technological advances, physicians’ unconscious fantasies of heroism, and the urging of patients, among other factors, combined to produce the DES disaster-a massive tragedy that could occur again in any area of medicine.
DES Diethylstilbestrol – New Perspectives – Author David A. Edelman, first published in 1986
“An important contribution to the understanding of the uses of DES by pregnant women and the risks associated with this use. It is the only book on this subject that provides a scientifically objective overview and should be read by all who are involved in the debate over the effects of in utero DES exposure, including those men and women who were unfortunately exposed to the drug” American Medical Writers Association, July 1987.
BOOKS AND PUBLICATIONS IN FRENCH
Distilbène: des Mots sur un Scandale – Auteurs Véronique Mahé, publié en 2011
On estime le nombre de victimes du DES à 360 000 en France. Préfacé par Marie Darrieussecq, marraine du Réseau D.E.S. France, ce livre donne la parole aux femmes et aux hommes – mères et pères, filles et fils, compagnons – qui vivent les douloureuses conséquences de ce scandale médical, pour faire entendre leur souffrance et leur colère
DES (Distilbène – Stilboestrol): Trois Générations Réalités Perspectives – Auteur Anne Levadou, publié en 2010
Book presented by the support group Réseau D.E.S. France presenting texts from speakers of the DES symposium organized in France in November 2010.
Moi, Stéphanie, fille Distilbène – Auteur Stéphanie Chevallier, publié en 2010
Stéphanie Chevallier est présidente de l’association des “Filles DES”. Elle est aujourd’hui l’heureuse maman d’un petit garçon adopté au Vietnam et poursuit son combat au nom des victimes du Distilbène grâce à son important rayonnement médiatique (elle est apparue dans Libération, Le Monde, etc…). Ce livre est son histoire et son combat contre l’ignorance face au DES.
Le Distilbène Trente Ans Après – Auteur Bernard Blanc, publié en 2008
Cet ouvrage est le fruit de la collaboration de plusieurs experts reconnus pour leur compétence dans ce domaine. Il intéressera tous les gynécologues obstétriciens, les urologues, mais aussi les médecins de santé publique et les sages-femmes.
Saskia ou le deuil d’un bébé Distilbène – Auteur Anne-Marie Lof, publié en 2000
Ce livre est le récit poignant d’une mère qui, sans le savoir, attend un « bébé Distilbène », du nom de ce médicament que l’on a donné aux femmes contre les nausées. Or, les filles des mères « contaminées » ont une propension aux fausse-couches et à d’autres pathologies. A partir de ce drame, Anne-Françoise Lof écrit un récit poignant dont le point de départ est la « non-existence » de l’enfant qui n’étant pas né, ni déclaré civilement, est tout de même né, même s’il était mort, une vraie personne, avec un vrai deuil, un vrai enterrement, une vraie souffrance. Elle s’appelait Saskia.
Di-Ethyl Stilbestrol was sold under many names…
Di-Ethyl Stilbestrol was sold under many names including Distilbène®, Stilboestrol-Borne®, Benzestrol®, Chlorotrianisene®, Estrobene® and Estrosyn® to name just a few. Many companies manufactured and marketed this drug under more than 200 different brand names.
DES was not only sold generically under a multitude of brand names but also commonly administered in different shapes and forms: tablets, injections, vaginal suppositories and sometimes even as an ingredient in pregnancy vitamins.
In America alone there were 267 drug companies that made and distributed DES and other similar synthetic estrogens because it was un-patented and easily produced. Aggressive marketing pushed DES to also be used for more than 100 medical conditions.
No wonder most people who have been exposed to Diethylstilbestrol don’t even know about it! Check out our DES Drugs photo album on Flickr.
Want to know more about the pregnancy drug DiEthylStilbestrol?
DES Cancer Link 40th Anniversary
Guest post from DES Daughter and WONDER DRUG screenwriter Caitlin McCarthy; DES cancer link 40th anniversary triggers a flurry of press coverage.
DES National Public Education Campaigns
Carol Devine radio interview on the silence around the DES issue and the difficulties to push for a DES National Education Campaign.
Can the Mediator scandal lead to justice for drug victims ?
Massive media coverage of Mediator drug scandal is parallel to the silence surrounding DES exposure but could lead to justice for drug victims.
Victory for a DES 3rd generation victim : the pharmaceutical company condemned
First 3rd generation DES Distilbène® court case. Justice is made for the victims Louis and his mother Helene. UCB Pharma is condemned.
Distilbène®: 20 Years of Legal Battle
First Distilbène® lawsuits, first victories for DES daughters, historical turning point and first victory for DES third generation against UCB Pharma.