The Bitter Taste of a Miracle Drug
Social Interest
The film shows an interesting view of the rigidity, and even arrogance of the medical establishment in France. It also reveals the cultural differences between the countries discussed in this documentary. The Netherlands and the United States both have opportunities for DES victims to file for compensation, while France and Belgium are still in the process of requiring full acknowledgment for those harmed by this fertility drug. Another cultural issue that is highlighted is the dominant ideas on pregnancy and motherhood. Women are expected to become mothers and should do anything to accomplish this goal. This is the reason that DES was developed in the first place. Unfortunately, this discourse is still present with the daughters and granddaughters who initially suffered from it. In ‘The Bitter Taste of a Miracle Drug’ it becomes clear that people in general do not easily learn from their past mistakes, and that they cause pain and misery because of it.
Historic Relevance
Diethylstilbestrol was first developed in a laboratory in 1938 as a synthetic estrogen. It was used during 1938-1978 in several Western countries, including the US, Canada, Australia, France and Belgium. In France it was even distributed until the early 1980s. It was prescribed to pregnant women to prevent miscarriages or other pregnancy difficulties. It was thought that these pregnant women did not produce enough estrogen on their own, DES was considered a safe and would help these women deliver healthy children. In 1953 a published research by W.J. Dieckmann showed that DES did not prevent miscarriages or pre-mature births, and the drug was determined ineffective. In the early seventies it was known in the US that DES was a cause of rare vaginal cancer, and the drug was banned. In France, these studies were not acknowledged or unknown, leading to the further distribution of DES. Some physicians tried to expose the harmful consequences of DES to colleagues and wanted to inform the public, but they were hindered. Mostly the DES affair was either ignored or silenced in France, leaving numerous women suffer unnecessarily. The genealogical effects of this ‘miracle drug’ are still being researched today.
Scenes
- Did Your Mother Take DES?
- The documentary starts with the question: Did you mother take DES? With this question Stephane Mercurio starts a journey through the life of DES daughters. They ask recognition of the medical establishment for their deformed T-shaped uteruses, their fertility problems and their heightened chances of getting a rare type of cancer.
- Looking for Information
- In France there is still much uncertainty among DES daughters about their condition. Many doctors do not mention DES or relate the patient’s infertility problems to this drug. In this scene the cause of the deformation of the uterus is explained by the doctor. DES caused an increased acceleration of female hormones that resulted in the deformity of the uterus. Because of this distortion within the development of the female genitals, the womb is often too small for an embryo to fulfill its growth.
- Sharing the Bitter Taste
- DES daughters have started a victim support group in many countries. In this scene a group of French daughters discuss their experiences. They fear the over-medicalization of their pregnancies. They also have difficulty finding understanding for their problems and their childlessness is often frowned upon.
- Washington Conference
- Support groups from around the world come together at a the DES conference in Washington to discuss research material, studies and victim estimates. DES was distributed between the 1940s and 1970s in many Western countries. The participants of the conference are amazed by the discrepancies in distribution of DES between the United States and France. American scientist had already established in an early stage that DES was useless and could be dangerous. In France, however, it was widely distributed until 1977. Third generation exposure is also a topic of concern among the DES daughters.
- Scandalous!
- In 1983 Le Monde published an article to alert the French population about the dangers of DES. A DES mother explains that she is amazed about the small amount of attention that is paid to this topic within France. 80.000 women have suffered because of DES and are still dealing with the consequences. She finds it scandalous that the pain of so many women is not enough to move public opinion. DES issues should not stay invisible any longer.
- Dr Anne Cabau
- Dr Anne Cabau acted on behalf of DES victims within the medical establishment. She wrote an article on DES and its consequences and tries to inform the public and her colleagues about this topic. DES is not discussed among physicians and within gynecologist classes. It is simply ignored as a medical failure we could learn from.
- An Invisible Handicap
- The French support group of French DES daughters feel discriminated. Their handicap is not recognized because of its invisibility. Doctors will not admit the DES failure and are badly informed about the subject.
- Didn’t Doctors Know?
- Professor Dr Dieckmann published the following article in 1953: ‘Does the administration of diethylstilbestrol during pregnancy have therapeutic value?’ in the American Journal of Obstetrics and Gynecology, volume 66, page 1062-1081. In this article the uselessness of DES was established. Infertility was determined a genetic medical issue and was not related to hormone production. German hospitals therefore did not distribute the DES drug among women who had trouble getting pregnant, only on very rare occasions. In other countries, however, DES was widely distributed and seen as a ‘miracle drug’ that would stop miscarriages. Some professors in France, such as Dr Varengo, adhered to the findings of Dr Dieckmann and informed their students not to prescribe DES to their patients. A few French researchers tried to inform the public and sought help from the Institute of Gynecology but were ignored. The wall of silence was not easily broken, but doctors could have been informed adequately and could have prevented the suffering of the DES mothers and daughters. It was not until the major press campaigns in the late 1980s that the medical establishment officially was informed by the government about DES. Now, pharmaceutical industries are sued, not the doctors.
- The Need for Recognition
- Among the DES victims the need for recognition is huge. They would like doctors and gynecologists to admit to their wrongdoings. In countries such as the United States and The Netherlands lawsuits and compensation funds are a possibility to help DES daughters.
- Hope?
- Fortunately some hospitals provide special care for DES daughters and their pregnancies. They carefully monitor and assist their patients. Another optimistic development is the initiative to collectively sue the doctors, hospitals and pharmaceutical industries who have distributed DES, but hard evidence is needed
- UCB and Ascertainment
- The pharmaceutical company UCB widely distributed DES in The Netherlands, Belgium and France. This company does not publically recognize the link between the infertility and cancer among patients who took this drug. Lawsuits in both countries prevent them from elaborating on this subject. UCB only contributes to a compensation fund for DES victims in The Netherlands.
- Unfinished Business
- The story of DES daughters has not come to an end. Lawsuits, continuing fertility problems, pregnancies and despair keep the topic alive. Also the influence of DES on third generation children are yet to be discovered. The generation that is effected by DES is yet to gain recognition of their suffering.
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