I had the opportunity to interview Dominique Albert and discuss the ongoing impact of diethylstilbestrol (DES). Dominique, who lives in Bristol in the United Kingdom, founded the DES Daughter Network with her husband to help spread awareness of the long-term damage caused by the diethylstilbestrol drug. As one of the millions of women affected by DES, she has bravely shared her story.
Diethylstilbestrol was globally distributed for several decades as a synthetic estrogen that could help women during pregnancy, and Dominique’s mother was one of the estimated 5 to 10 million women who took DES. The drug has been linked to multiple fertility issues and cancers with research showing an impact on the second and third generations of children. Dominique Albert is an advocate for people who suffer from the consequences of the DES drug.
How did you discover that you were affected by the DES drug?
Dominique: A few years after I was born, my mom read an article published in a national newspaper about the side effects of DES on the daughters of the women who had been prescribed the drug during pregnancy. She remembered very well taking those pills throughout her pregnancy under her gynecologist’s recommendation. She got advice and support from a group advocating for the victims of this drug scandal and made sure their awareness brochures and newsletters were left around for me to see and read. She warned me about the possible side effects of my DES exposure when I was just a preteen. I didn’t make much of it until much later when I miscarried at age 30.
What impact has diethylstilbestrol had on your life?
Dominique: The DES drug has had a huge impact on my life. It has shaped the person I am today. When you’re told very young that you may never have children, and you’re at risk of a rare form of cancer, when the relationship with your mom is affected by the guilt she feels for the harm this drug may cause you. You’re labeled as a drug victim before being old enough to truly comprehend the extent of the issues involved. Your life and personality is decidedly damaged by the fear and anxiety this drug cast upon all those who are aware of their DES exposure.
However, things could have been a lot worse. I consider myself as one of the luckiest victims of this drug scandal. I was told after I miscarried that I would never have children because of the damage DES had caused to my body. Despite a congenital uterine malformation typical of DES exposure, I was blessed with three daughters, and I am generally healthy. I’ve tried to forget about DES, ignore the risks, dismiss the reality, but I came to the conclusion that DES is an integral part of who I am. It won’t go away. It’s in my genes, and new studies are showing that DES has been passed onto the next generation. Being a DES daughter means that you have to fear for your health all your life and deal with all sorts of health issues that can appear at any age. Teenage girls have died from a cancer linked to DES. DES daughters have suffered infertility, grieved the loss of a baby born too early or are fighting breast cancer. More health concerns are discovered as exposed individuals age, and the DES third generation, my daughters, may suffer from the consequences of this carcinogenic drug once believed to be a wonder drug.
What prompted you to start the Journal of a DES Daughter and the DES Daughter Network?
Dominique: After I had my daughters, I thought I could turn the page and forget about DES. I thought the troubled years of struggles and fears were behind me. I was wrong. DES is not something that you can forget about. Because my mom made me aware of my exposure to the drug, I was able to challenge doctors. I knew something was wrong with me, so I was able to insist and demand further investigation, treatment and adequate pregnancy care. How many women are not aware of their exposure and as a result are not receiving proper diagnostics and treatments? I started my website in March 2011 in the hope that I would reach out to women who had not been made aware of their exposure by their moms. I started my website not only as a way for me to deal with the impact DES exposure has had on my life and on my loved ones but as a tool to share my experience and knowledge of diethylstilbestrol with other people.
I started my website in the hope that it would provide general information about DES exposure and DES side effects or consequences. I wanted to encourage women who think they may have been affected by DES exposure to seek advice and support from DES Action groups. I wanted to raise awareness among the general public about Distilbène, and the many other brand names under which the drug diethylstilbestrol was sold. Also, I wanted to log my DES medical history for my daughters, the third DES generation, who hopefully will never have to use this information.
Do you feel like the media is ignoring the daughters of DES?
Dominique: The media is totally ignoring the DES drug scandal and the health issues associated with DES exposure. DES is a complex issue. Unlike many other drug scandals, such as thalidomide, the consequences are not in your face. Children affected by DES were not born with malformations that you could see at birth. With DES, it is only years later that the drug has side effects on the people who were exposed before birth. I guess it doesn’t have the immediate shock factor that the media is craving for sensational headlines.
DES affects women and men. It causes cancer, infertility, pre-term labor, miscarriages, ectopic pregnancies, and other issues. These are not very glamorous topics. DES was prescribed in some countries until the late 1970s, so the youngest DES daughters should reach the age of menopause by 2040. The DES story will not end until the three generations of DES-exposed individuals, the mothers, daughters, sons and grandchildren, are gone. Diethylstilbestrol has affected millions of people. Personally, my DES journey started with a miscarriage prior to complicated DES pregnancies and now continues with constant fear for my daughters, my mom and my own health. Diethylstilbestrol is a world drug disaster, yet very few people know about it or its tragic consequences. More people have been exposed to DES because it was also used to support faster growth in cattle and chicken up through the 1970s. After the 1970s, farmers were still using it illegally.
Can you describe some of the issues surrounding DES action groups in the United Kingdom and the United States?
Dominique: Thanks to the excellent work of DES action groups, more people are aware of DES, but these groups are facing great challenges. The lack of funding, support and interest means that some groups had to stop their awareness activities and close down. This is exactly what happened to DES Action UK. It is estimated that 300,000 people in the UK are affected by the drug, yet absolutely nothing is being done to support these victims. In the U.S., 5 to 10 million people have been exposed. It is a great battle for DES advocates around the world who often are DES victims and have to fight the health consequences of this drug at a personal level too. I admire the advocacy groups such as DES Action USA, Reseau DES France, DES Action Australia-NSW, and DES activists such as Caitlin McCarthy, Andrea Goldstein, Anne Levadou and others who dedicate their lives to the DES cause.
Can you share your views on the class action lawsuits for diethylstilbestrol?
Dominique: The health side effects of DES are very diverse with infertility, congenital malformations, cancer and psychological disorders, so it makes it very difficult to file a class action lawsuit. A class action suit requires a commonality of injuries, but for DES, each case is very different. In the U.S., the hearing results of an ongoing DES breast cancer lawsuit involving 53 DES daughters will determine if the first ever DES class action suit will be allowed to go forward, but I think they will go for a settlement rather than a class action suit.
In the Netherlands, lawsuits against several laboratories producing the drug have led to the creation of a compensation fund of 35 million euros. I wish more DES victims would have the courage to engage in a legal battle, but it takes more than courage to file a lawsuit for such a complex and difficult journey against big pharma. 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. These lawsuits won’t bring back the DES daughters who died from cancer. They won’t repair the long term damage of this toxic drug. We are victims, and we deserve justice.
What do you feel the drug companies responsible for producing DES should do?
Dominique: They should fund research for the DES third generation. DES is not something of the past. We know the risks continue to unfold. More studies and awareness is critically needed to ensure the third generation of victims receives appropriate monitoring and care. Awareness is key, but more needs to be done for the next generation of doctors to know about DES and make funding available for research.
Can you describe how you are raising awareness for DES and your future plans?
Dominique: For me, social media is simply the easiest, fastest and cheapest way to raise DES awareness. I want to connect, contribute, collaborate and change. I would love to set up a charitable trust to fund research, small community events and small educational campaigns. I am also considering writing a book.
The work my husband and I do to raise DES awareness is completely voluntary and independent. Existing DES Action Groups focus mainly on the issues associated with DES in their own countries. We’ve always thought that together we could be stronger. People around the world have been affected, so it is important for us to gather information, collaborate and unite existing groups to work together globally. DES truly is a worldwide drug tragedy, and we are connecting the dots between existing organizations to rally support from a wide audience outside the DES community.