DES: One Of The Biggest Medical Disasters In History
Caitlin McCarthy’s mother was prescribed a prenatal vitamin that contained DES – a toxic and carcinogenic estrogen – and when Caitlin was 35 she learnt that she had also been exposed to the drug that has been touted as one of the biggest medical disasters in history.
Caitlin, who is the award-winning screenwriter of the feature film WONDER DRUG, is on a mission to bring attention to this massive medical eff up, and raise awareness about just how widespread its ripple effect is.
In this interview, Caitlin shares what she has learnt about this shocking and completely devastating case of medical negligence, and how it affects her life and the lives of many just like her.
What is DES?
In Australia, DES (diethylstilbestrol) is more commonly referred to as stilboestrol. No controlled studies were ever conducted by the drug companies to determine the effectiveness or safety of DES for use during pregnancy. Yet, for decades, drug companies claimed DES prevented miscarriages and problem pregnancies.
DES 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.
DES was sometimes given as an injection, but primarily it was prescribed in pill form. Never patented, DES was marketed under 200 different names, although the majority of the drug was actually produced by Eli Lilly. DES was sometimes even included in prescription prenatal vitamins. Because DES was also used in animal feed, it was ingested by men, women, and children who ate poultry and meat for decades.
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.
Researchers are now investigating whether DES health issues are extending into the next generation, the so-called DES Grandchildren. As study results come in, there is growing evidence that this group has been adversely impacted by a drug prescribed to their grandmothers.
There are a number of other suspected effects, including auto-immune disorders, but many of these effects are still awaiting further research.
Why is DES described as one of the biggest medical disasters in history?
The DES disaster affected millions around the world for decades. Emerging research suggests that DES altered DNA. So the DES disaster will go on, and on, and on for generations. It will never end. That’s pretty big!
How is it that something like this – that so tragically affected millions of people – was allowed to happen? And why was it allowed to go on for so long?
My short answer:
• Patients followed doctors’ orders back then without question.
• Doctors believed the DES hype from drug company sales reps, and didn’t read the published reports.
• Drug companies saw dollars signs, and tossed morals and ethics out the window.
• The FDA fell asleep on the job.
The DES disaster was the perfect storm of naïveté, negligence, and greed.
My long answer:
Sir Charles Dodds created DES, a synthetic estrogen, in London, England, in 1938. He never intended DES for use during pregnancy. It was intended for short-term use by menopausal women. DES was cheap to make and easy to use – just a simple pill. No more painful estrogen shots or risk of overdose. DES was a “wonder drug.”
Dodds created DES while working with a grant that covered the cost of research, but prevented his discovery from being patented. Once the formula was released, he couldn’t control its real-life uses.
The drug companies flooded the FDA with applications for DES. Overworked and underfunded, the FDA asked the drug companies to participate in a joint application. One decision about DES applied to all.
It’s important to repeat that no controlled studies were ever conducted by the drug companies to determine the effectiveness or safety of DES for use during pregnancy, even after some scientists started questioning its efficacy in the 1950s. 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. This is because pharmaceutical companies continued to heavily promote DES use to doctors. The drug was a top moneymaker for Big Pharma.
Also, as early as 1938, studies showed that DES promoted cancer in lab animals. But at that time, people thought animal studies only provided a hint of what could happen in humans. Also, no one knew that drugs could cross the placenta and affect a baby in utero. (Note there was a 1941 mouse study that showed mice with absent or deformed fallopian tubes. The warning signs were there for humans.)
In the late 1960s, there was an unprecedented appearance of rare cancer in young women. Clear cell cancer (CCA) – a rare cancer of the vagina – was diagnosed in an age group never before found to develop it. (Normally elderly women developed CCA.) There were eight such cases at Massachusetts General Hospital in Boston, Massachusetts, USA alone. One of the mothers raised the question of whether her daughter’s cancer might be connected to DES exposure in utero. Bingo!
Doctors discovered the DES link in 1971 and published their findings in the April 1971 issue of New England Journal of Medicine. News of the cancer cases made national headlines. However, the FDA did not act on this information until public pressure forced the FDA to contraindicate DES during pregnancy in November 1971. DES was not banned for human use. (The reaction of Australia’s health authorities in 1971 was silence.)
It wasn’t until September 2000 that the FDA finally withdrew its approval of DES for marketing.
I am a big believer in the power of an apology. When the British Government officially issued a long-awaited apology to the hundreds of survivors of the thalidomide drug scandal in January 2010, I immediately thought of DES. To this day, the millions of DES victims have never received an apology from the U.S. Government.
Also, to this day, not one drug company has ever apologised or accepted responsibility for the DES tragedy. Nevertheless, the drug companies have paid millions in out-of-court verdicts and settlements to DES Daughters and Sons who suffered injuries from their exposure.
In 2010, I asked U.S. Senators John Kerry and Scott Brown to jointly contact the FDA (a U.S. government agency) about a DES apology. On February 22, 2011, the senators received a 3-page response from the FDA, per their joint letter about a DES apology. The FDA’s letter did not contain an official apology from the federal government for the DES drug disaster. However, after 40 years of silence, it finally acknowledged the devastating health consequences of DES, explained FDA initiatives to prevent future drug disasters, and talked about DES as a “tragedy.”
But the FDA continues to cover up its role in the DES disaster. It actually touts DES online as one of its milestones in “100 Years of Promoting and Protecting Women’s Health”.
Many DES Daughters have written to the FDA, asking it to remove the offensive “milestone” from its website. To this day, the FDA refuses.
What is your connection to DES?
I discovered during a colposcopy in 2005, at age 35, that I had been exposed to DES. Unbeknownst to my mother, she had been prescribed a prenatal vitamin that contained DES. The discovery not only devastated me, but my entire family. That’s really important for people to know. DES affects everyone in a family. Guilt, fear, anger, and sadness are common emotions.
I decided to empower myself through activism and writing a screenplay about DES called WONDER DRUG. Does this make the pain go away? No. But I’m determined to make lemonade out of a lemon situation.
How does being a DES daughter affect your body, health and life today?
I take precautions such as staying current on the latest DES research, and being vigilant about proper health screenings such as having annual mammograms and the special DES Pap/pelvic exam every year. I also try to avoid soy, pure lavender, tea tree oil, and other items that mimic estrogenic activity in humans. My eyes have been opened. I’m now more aware of what I put into my body.
Is it possible that another medical disaster similar to this one could happen today? Are we any more protected?
Not one damn thing has been learned from the DES tragedy.
For example, a recent paper in the Journal of Bioethical Inquiry found parallels between the DES disaster and the current prescribing of dexamethasone, a steroid being prescribed to pregnant women off-label to try to prevent intersex, tomboys and lesbians. Pregnant women are being told the drug is safe, which isn’t true. It’s risky. The paper asks why government regulators are allowing these off-label prescriptions to happen.
And then there’s BPA, DES’s chemical cousin. The FDA finally banned it from baby bottles and children’s drinking cups in 2012, but still refuses to ban it from other plastics or food packaging, including canned food containers, water bottles and baby formula containers.
It’s always the same old story repeating itself. That needs to change!
Tell us about your film, Wonder Drug …
WONDER DRUG (www.wonderdrugthemovie.com) is like THE HOURS, with three intersecting storylines across several decades. Set in Boston, Massachusetts, USA, WONDER DRUG is inspired by the true story of the drug DES and interweaves the lives of a Big Pharma executive, a feminist doctor, and thirtysomething newlyweds.
The feature length film is in development with Creative Producer/Star Alysia Reiner, best known for her Screen Actors Guild Award (Outstanding Performance for an Ensemble Cast) playing Christine, Jack’s fiancée and then bride, in the Oscar-winning film SIDEWAYS.
I wrote the screenplay, which has won awards or received nominations in over 20 international film festival screenplay competitions and labs. Most notably, WONDER DRUG was selected as an Alfred P. Sloan Foundation script for the Hamptons Screenwriters Lab and chosen for a live staged reading of select scenes at the 15th Annual Hamptons International Film Festival, sponsored by the Sloan Foundation. The reading starred Steve Guttenberg (THREE MEN AND A BABY) and Alysia Reiner.
I wrote WONDER DRUG because the mistakes we do not acknowledge we are doomed to repeat. The script highlights historical issues of control of medicine by pharmaceutical corporations and their government collaborators. Pre-feminism stature of women in society is used as a potent metaphor for the courage needed to live one’s truth and speak up in the face of institutional resistance, abuse, or neglect.
Why do you do what you do? Why is it so important for you to spread this message?
Maya Angelou once said, “When you know better, you do better.”
Women are undergoing infertility treatments with hormones and HRT interventions with additional hormones. If they don’t know that they’re a DES Daughter, they are unaware that they were exposed to unnaturally high levels of a synthetic estrogen before birth. That has to be of concern when using additional hormones.
People also need to know if they were exposed to DES so they can make informed medical choices and get the medical screenings they need to protect their health.
Most doctors don’t even know that DES Daughters need a special Pap screening. That is because most doctors aren’t learning about DES in medical school. As a result, millions of men and women are not receiving the proper checkups, tests, and treatments from doctors because they do not know about their exposure.
Also, a rare clear cell cancer linked to exposure is considered a disease of post menopausal women, so it’s pivotal to educate people about DES now, as we may see a second wave of clear cell cancer when those exposed to DES reach this age. Since DES was heavily prescribed in the 1950s, we could see an outbreak of clear cell cancer cases in the near future.
Additionally, DES provides a classic example of endocrine disruption and its trans-generational effects, giving science an illustration of such effects in other forms of life such as birds and fish.
It’s outrageous that more attention has not been paid to this subject by the medical community and the media.
We all need to do better.
Do you know someone who has been exposed to DES?
Bio: American Caitlin McCarthy (www.caitlinmccarthy.com) 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 USA. An award-winning screenwriter at international film festivals and labs, Caitlin has two feature films in development: WONDER DRUG with producer/star Alysia Reiner; and RESISTANCE with director Si Wall. Caitlin is also partnering on writing/creating the TV series PASS/FAIL with Jim Forbes, a multiple Emmy, ALMA, AP and Golden Mic award-winning writer, producer, correspondent and narrator; and developing the TV series FREE SKATE with producer Elizabeth (Betty) Buckley of B. Creative and choreographer Michael Masionis. In addition to screenwriting, Caitlin serves as an English teacher at an inner-city public high school in Massachusetts. Prior to education, Caitlin worked in public relations, where she fostered relationships with the press and crafted messages for companies that were delivered worldwide.
Positive affirmation for the day: I listen when my body speaks to me.
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