2. In 1953, a study of 2000 women at the University of Chicago showed that DES did not prevent miscarriage; on the contrary, it was associated with increases in premature labor and a higher rate of abortions.
3. Despite this study, the drug continued to be used. It wasn’t until 1971 that American drug companies were legally obliged to label DES “unsuitable for pregnant women”. The FDA did not ban the drug but issued a contraindication which means that the drug DES continued to be prescribed to pregnant women even after the link between a rare form of vaginal cancer in young women and prenatal exposure to DES was established.
4. A whole generation of new medical students and doctors don’t know about Diethylstilbestrol, yet a study published in 2011 confirmed lifetime risk of adverse health effect in DES daughters (the youngest are in their mid 30’s early 40’s). DES is one of those cases where the patients often know more about its effects than the doctors.
5. DES is a multi-generational tragedy. Research by the Netherlands Cancer Institute in 2002 suggests that hypospadias a misplaced opening of the penis occurred 20 times more frequently among third-generation sons. In laboratory studies of elderly third-generation DES-exposed mice born to DES daughter mice, an increased risk of uterine cancers, benign ovarian tumors and lymphomas were found. Third-generation male mice were shown to be at risk for certain reproductive tract tumors.
Are we going to ignore these results like we did in 1939?
Third-generation children, the offspring of DES daughters and DES sons, are just beginning to reach the age when relevant health problems can be studied. Funding for more research is critically needed to continue to look for evidence of reproductive abnormalities and cancers among third-generation DES women and men to ensure they receive appropriate follow-up care.
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.
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.
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.”
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.
The scope of adverse effects in males exposed to diethylstilbestrol (also called DES sons) has been a lot less documented than the effects in females (read post “DES Sons Numbers and Health Concerns“). However, a number of studies have confirmed and identified that DES sons are susceptible to a wide range of medical adverse effects associated with prenatal exposure to diethylstilbestrol.
Studies on DES Sons Health Issues
The most common abnormality in DES sons is epididymal cysts. The likelihood of DES sons having epididymal cysts ranges from 21% to 30%, in comparison with 5% to 8% of unexposed men (Gill, 1988; Gill et al., 1979).The epididymis is a structure on the back of each testicle where sperm are stored. Epididymal cysts are non-cancerous growths that feel like small lumps. They may disappear and recur over time. They do not need to be treated unless they are painful. However, all lumps should be reported to a doctor and testicular self-exams should be performed on a monthly basis.
Testicular problems in some men exposed to Di-Ethyl Stilbestrol® include both small testicles and undescended testicles. Both of these abnormalities are visible at birth. Men with undescended testicles have an increased chance of developing testicular cancer, even if their mothers didn’t take Di-Ethyl Stilbestrol®. The only definitive prospective study to date of the association between in utero exposure to diethylstilbestrol and testicular cancer indicated that levels of testicular cancer were elevated, though not to a statistically significant extent, among DES-exposed men (Strohsnitter et al., 2001). The study found it unlikely that DES exposure is heavily associated with testicular cancer, but concluded that the findings did “lend support to the hypothesis that the prenatal hormonal environment may influence the development of testicular cancer in adults” and suggest follow-up study of DES men for increased risk of testicular cancer.
Some studies have also indicated that testicular varicoceles occur more often in DES sons than in other men. A varicocele is an irregularly swollen or varicose vein on the testicle. This enlarged vein produces a higher temperature than is normal for testicles, and over a period of years can lower the number of normal sperm as a result.
Studies of the psychological effects of DES exposure are limited, but evidence has been found that diethylstilbestrol is linked with increased likelihood of various psychological and neurological impairments. This includes anxiety, major depressive disorder, and other mood disorders (in DES sons and daughters).
Studies of cancer, heart disease, and autoimmune diseases among DES sons are ongoing.
Studies on DES Sons and Infertility
There has been some concerns amongst DES sons that their DES exposure might be linked to infertility. Although one study found a lower sperm count in men exposed to diethylstilbestrol compared with unexposed men (Gill, 1979), a 40-year follow-up study of DES sons found no increased risk of infertility among men exposed to DES before birth (Wilcox, 1995). The men in this study were all born between 1950 and 1953.
The health issues shared by DES sons include but are not limited to the above identified health problems. Prenatal exposure to Di-Ethyl Stilbestrol® is responsible for a wide range of not only medical but personal and social adverse effects. Further study and monitoring of these effects on men is critically needed.
If you suspect or know that you are a DES son, tell your doctor and be sure to learn about the most common symptoms associated with the conditions referenced on this page. The scope of adverse effects in DES sons is less documented than the effects in DES daughters but you are not alone and support is available through the DES Sons International Network. Consider joining the DES community on facebook and twitter.
According to DES Sons International Network, the exact statistics on the number of males exposed to Diethylstilbestrol before birth are difficult to obtain, but the most reliable estimates from within the U.S.A. place the figure at somewhere between 200,000 and 1.5 million males born between 1947 and 1971 (the years that Di-Ethyl Stilbestrol® was used to support pregnancies in the U.S.A.).
DES sons were also born in a number of other nations (Canada, Europe, and Australia) but reliable statistics on global exposure rates are unavailable.
DES Sons or the forgotten piece of the jigsaw
Despite the fact that women who have been prescribed Diethylstilbestrol during pregnancy gave birth to as many sons as daughters (1 to 3 million each, in and beyond the U.S.) far less research and advocacy on behalf of DES sons have occurred. Nearly 90% of the primary research on the human health effects of Diethylstilbestrol has been limited to DES daughters, and most of the public health research, education and advocacy has centered around concerns of DES daughters only.
Although less is known about the consequences of diethylstilbestrol exposure in men than in women, a number of studies have confirmed and identified some important health concerns. It is therefore important for men who know or suspect they are DES sons to be aware of possible problems and know what to do about them.
Health problems experienced by DES sons range from harmless irregularities to problems that may require medical treatment. Many people, including some doctors, do not know that men can be affected by DES exposure. The fact that genital anatomic abnormalities in boys exposed to Di-Ethyl Stilbestrol® in utero are not well known by gynecologists was highlighted in a recent study published in June 2011 by the National French Agency for the Safety of Health Products (AFSSAPS). It has been estimated that as many as half of all DES Sons are currently unaware of their exposure.
When DES advocate Michael Freilick said to his doctor he was a DES son, his doctor replied: “Forget it. It has nothing to do with your testicular cancer.” Sadly, Michael who was president of DES Action USA passed away in July, 2011 (his death is unrelated to DES). “As a DES Son who had surgery for testicular cancer at age 29 he learned that men, and especially young men, need to pay more attention to their health. He wanted to alert them, and spoke out where ever and whenever he could. Michael used his experiences to show how early detection prolonged his life for decades” comments DES Action USA. Always pushing for continued research for DES sons, his contribution and legacy to the DES cause and DES sons in particular are remarkable.
What to Do if You Are a DES Son?
Tell your doctor and be sure to learn about the most common symptoms associated with the conditions referenced on this page.
Don’t stay alone, join the DES Sons’ Online Discussion Network for support and information on the latest DES research findings.
The DES Sons International Network was founded in 1999 in order to accomplish two major goals:
Provide support for males from around the world who were exposed in utero to Diethylstilbestrol.
Strengthen understanding, awareness, and major research about the range of adverse health effects that DES sons have experienced as a result of their exposure.
I would like to take on the opportunity to thank all the men and DES sons who commented on my facebook page or contacted me since I launched the blog in February 2011. Please break the wall of silence around the DES issues, keep commenting and sharing your DES stories. Together we are stronger!
The DES (Diethylstilbestrol) Drug Disaster, 40 Years Later
Below is a guest post from DES Daughter and WONDER DRUG screenwriter Caitlin McCarthy.
The DES Tragedy Is Far From Over
By Caitlin McCarthy
April 22, 2011 marks the 40th anniversary of the DES cancer link being made at Boston’s Massachusetts General Hospital. DES (diethylstilbestrol), a toxic and carcinogenic synthetic estrogen, is considered the world’s first drug disaster. It was prescribed to millions of pregnant women for decades: from 1938 until 1971 (and in a small number of cases for several years thereafter) in the United States; and until the mid-1980s in parts of Latin America, Europe, Australia, and the Third World. The currently proven effects of exposure include a rare vaginal cancer in DES Daughters; greater risk for breast cancer in DES Mothers; possible risk for testicular cancer in DES Sons; abnormal reproductive organs; infertility; high-risk pregnancies; and an increased risk for breast cancer in DES Daughters after age 40. There are a number of other suspected effects, including auto-immune disorders, but many of these effects are still awaiting further research.
I’m a DES Daughter who was born at the tail end of the tragedy in the U.S. My mother was unknowingly prescribed a prenatal vitamin which contained DES. I didn’t discover my DES exposure until 2005, when a doctor made the connection during a colposcopy. How scary is that?
What’s even scarier is that I’m not alone. Around the world, there are thousands – maybe even millions – of people walking around today, totally unaware that they, too, were exposed to DES. All of these people are not receiving proper medical treatment, or making truly informed decisions about their healthcare, as a result.
In an effort to raise awareness about DES, I wrote a feature film screenplay entitled WONDER DRUG. Set in Boston, Massachusetts, WONDER DRUG interweaves the lives of a Big Pharma executive, feminist doctor, and thirtysomething newlywed across different decades. The script has won awards or received nominations in over 20 international film festival screenplay competitions and labs, including selection as an Alfred P. Sloan Foundation script for the prestigious Hamptons Screenwriters Lab, and a live staged reading of select scenes at the 15th Annual Hamptons International Film Festival, sponsored by the Sloan Foundation and starring Steve Guttenberg (THREE MEN AND A BABY) and Alysia Reiner (SIDEWAYS). Acclaimed independent director Tom Gilroy (SPRING FORWARD) has expressed an interest in directing WONDER DRUG. All we need now is financing. (Producers can contact me via my official website: www.caitlinmccarthy.com.)
I also worked jointly with the offices of US Senators John Kerry (D-MA) and Scott Brown (R-MA) on obtaining an apology from the FDA for the DES drug disaster. That effort was first publicized on acclaimed author Elizabeth Searle’s website, and later picked up by renowned media outlets such as The Huffington Post.. (Thank you, Diana Bianchini, for writing the HuffPo piece!).
The FDA declined to apologize, but did send a three-page letter to Senators Kerry and Brown acknowledging DES as a “tragedy” on February 22, 2011. Upon reading the FDA acknowledgement, I immediately emailed Jeanne Ireland (who signed the FDA’s letter), asking the FDA to remove DES from its webpage touting DES as one of its milestones in “100 Years of Promoting and Protecting Women’s Health.” Jeanne Ireland didn’t respond to me. Instead, she palmed me off on Marsha B. Henderson, Associate Commissioner for Women’s Health (Acting) for the FDA. (Check out the communication between Caitlin and Ms. Henderson by reading the post: The FDA is lying by omission).
To this day, the offensive item about DES remains on the FDA’s website. And to this day, not one drug company has ever apologized or accepted responsibility for the DES tragedy. Nevertheless, they have paid millions in verdicts and out-of-court settlements to DES Daughters and Sons who suffered injuries from their exposure.
I am grateful that the 40th anniversary of the DES cancer link has triggered a flurry of press coverage. The Boston Globe recently ran a feature story about concerns for third generation effects; WCVB-TV Boston’s “Chronicle” newsmagazine aired a DES segment; Reuters published an item about DES Grandsons; New England Journal of Medicine ran an article about living with DES exposure; and Psychology Today features a story about remembering DES’s “tragic chapter in American childbirth.” Even the old “Lou Grant” TV episode about DES is making the rounds on Hulu.
On April 25, 1985, Ronald Reagan was the only US President to proclaim a National DES Awareness Week. No other president has ever done that. Why? DES is far from a dead issue.
I will continue my fight to raise awareness about the DES drug disaster. DES victims are the canaries in the coalmine when it comes to synthetic estrogen. The reproductive abnormalities, cancers, and infertility we deal with daily show what could happen to the human race if we don’t employ the precautionary principle. It suggests we act to protect public health when there is credible evidence of harm, rather than wait for absolute proof. What we do now clearly has an impact on future generations. Please join this fight with me.
ABOUT CAITLIN MCCARTHY:
Caitlin McCarthy received her Master of Fine Arts in Creative Writing from Emerson College, which is ranked by U.S. News & World Report as one of the best graduate programs in the country. An award-winning screenwriter at international film festivals and labs, Caitlin has a screenplay project in development: RESISTANCE with Populus Pictures and director Si Wall (SPEED DATE; THE DINNER PARTY). In addition to screenwriting, Caitlin serves as an English teacher at an inner-city public high school. Prior to education, Caitlin worked in public relations, where she fostered relationships with the press and crafted messages for companies that were delivered worldwide.
It is now 40 years since the connection between DES exposure and Cancer in DES daughters was discovered. On May 19th 2011, the Massachusetts General Hospital (MGH) in Boston, Massachusetts, USA where this connection was first made, will be hosting a DES (Diethylstibestrol) symposium.DES daughters will share their experiences and discuss with DES specialists the lessons learned about embryogenesis, fertility, and carcinogenesis from in utero exposures. The DES symposium is free and open to the general public. Please show your support to this event by attending or spreading the word.
The timing and location of the DES (Diethylstilbestrol) symposium have historical significance. In the late 1960s, there was an unprecedented appearance of a rare vaginal cancer in young women. Cases of Clear Cell Adenocarcinoma (CCA) were diagnosed in an age group never before found to develop it. A DES mother raised the question of whether her daughter’s vaginal cancer might be connected to DES exposure in utero. Doctors confirmed the link between DES and cancer in 1971 and published their findings in the April 1971 issue of the New England Journal of Medicine. It is at the MGH that the DES cancer link was first made on April 22, 1971.
In 2011, in the USA and in many other corners of the world, diethylstibestrol continues to affect the lives of not only the DES mothers who were prescribed the carcinogenic drug, the lives of their daughters and sons who have been exposed in utero, but also the lives of their grandchildren. And unfortunately, cancer is not the only health issue that has been linked to DES since 1971. The DES health concerns are still as relevant today as they were in the late 1960’s. Research is still needed, and more needs to be done to ensure the DES victims are not forgotten. The DES (Diethylstilbestrol) symposium is an important event which will contribute to raise awareness of the devastating long-term side effects of synthetic hormones such as diethylstilbestrol.
DES (Diethylstilbestrol) Symposium
WHEN Thursday 19th May 2011
WHERE Massachusetts General Hospital in Boston, Massachusetts – Masa Ether Dome, Bulfinch Building
TIME from 3:00 pm to 5:30 pm Reception from 5:30 pm to 6:30 pm in the Ether Dome, Bulfinch 4.
Part I (3 – 4 pm) of the May 19, 2011 symposium will feature a DES Daughters’ Panel, moderated by Annekathryn Goodman, MD. The DES Daughters’ Panel will include:
Andrea Goldstein, RN – DES daughter and DES activist since 1978; recognized throughout the DES community as the historian for the DES issue.
Caitlin McCarthy – DES Daughter and screenwriter of WONDER DRUG (www.wonderdrugthemovie.com), an award-winning screenplay about the DES drug disaster (currently seeking financing).
Cheryl Roth – DES daughter who does not want the DES tragedy forgotten. She is interested in ensuring that future generations who may be affected by the ingestion of the drug by grandmothers, great-grandmothers, etc. have knowledgeable physicians to treat them.
Part II (4 – 5:30 pm) will be the Scientific Session, moderated by John Schorge, MD. Speakers and topics will include:
Michael Greene, MD (Division of Maternal Fetal Medicine) – History of the use of DES in pregnancy.
Robert Young, MD (Department of Pathology) – Pathologic changes in the female reproductive tract after in utero DES exposure
Thomas Toth, MD (Division of Reproductive Endocrinology and Infertility) – The structural changes in the uterus and cervix and implications for fertility after in utero DES exposure.
Marcela Del Carmen, MD (Division of Gynecologic Oncology) – Clear Cell Carcinoma of the vagina in DES exposed women.
Annekathryn Goodman, MD (Division of Gynecologic Oncology) – Endocrine disruptors and the potential molecular basis of carcinogenesis DES exposure.
DES events such as the DES symposium are a great acknowledgement that Di-ethyl stilbestrol is not something of the past. The DES tragedy is far from over so please help support this event by attending or spreading the word. The Diethylstibestrol DES symposium is free and open to the general public.
This event is sponsored by Vincent Obstetrics and Gynecology.