DES Cancer Link 40th Anniversary

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

Caitlin McCarthy cover page Boston Globe image
In the April 18, 2011 issue of The Boston Globe, WONDER DRUG screenwriter Caitlin McCarthy appeared on the cover and in the feature story about DES

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.

Caitlin McCarthy ImageABOUT 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.

5 Replies to “DES Cancer Link 40th Anniversary”

  1. Many thanks Caitlin for contributing a guest post to my blog.
    I hope readers will enjoy reading and learn from your post as much as I did.
    Best regards,
    DES Daughter

  2. Is there a way to find out if my mother was given DES in the 1960s? I know that she was given a drug (shot ? I think this was the delivery process but not absolutely sure) to prevent miscarriage (she had already had 2 – 3 miscarriages by the time she was pregnant with me in eat 1961). She was treated in a military hospital in Alaska (my dad was in the air force and mom was a civilian employee of the army). She tells me that she only knew she was being given some kind of hormones (she recalls them as being “male hormones” but I’m not sure this makes any sense). I suspect she had a similiar treatment during her pregnancy with my sister 2 1/2 years later again w/military hospital, this time in Texas.
    My mother has had breast cancer, and both my sister and I have had various gun issues ( including ancer cells on cervix). but no sign of vagina cancer yet. We are both disabled by autoimmune diseases (which run on my fathers side but just the same what are the odds we would both be so sick?).
    Bottom mine, as I struggle with , and attempt to manage my health, it would be good to know if DES has/will play a role.
    Thank you – and yes, your important work is worth your effort. I know how much activism takes in terms of time, energy, emotional toll, etc. and it must often feel alone in your battle, unable to personally see the positive impact you are having. What you are doing is brave and strong and compassionate. And I thank you
    Rhonda

    1. Hi Rhonda, thank you for your kind message. You should try to contact the military hospital who managed your mum’s pregnancy or the hospital where you were born if it is a different place to ask if there is any record that your mother was given DES. Unfortunately, finding medical records after such a long period of time is a struggle for many DES daughters (I don’t have any medical records showing that my Mum was prescribed DES. The only thing I have is the result of an medical examination where it says T-Shaped uterus typical of DES exposure that I’m keeping preciously and my Mum’s words who remembered taking the drug). You can also try to contact the county health department. They may be able to tell you where the records are, if they still exist. If you are able to get your mum’s medical records, bear in mind that DES was sold under many different names. DES Action USA has a list of DES brand names on their website. You may also want to complete the CDC’s DES Update Self-Assessment Guide. It can help you figure out how likely it was that you were exposed to DES. Unfortunately there are no medical test that can tell you for sure if you were exposed to DES. I hope this helps. Best of luck with your search. Please contact DES Action USA as I’m sure they will be able to assist you in your search to find out if your Mum took DES during pregnancy. Take care of yourself and kindest regards.

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