The DES (Diethylstilbestrol) Drug Disaster, 40 Years Later: The Tragedy Is Far From Over

22 Apr

Below is a guest post from DES Daughter and WONDER DRUG screenwriter Caitlin McCarthy.

The DES (Diethylstilbestrol) Drug Disaster, 40 Years Later:

The 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 HospitalDES (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. Below is Ms. Henderson’s email to me, which must be read in its entirety to fully appreciate the spin job:

“Thank you for your email. Please be assured that we acknowledge the tragedy of DES. However, it marks an important historical step when FDA took action to stop the use of DES in pregnancy, and to limit its use. This was a real benefit to the health of women and their children. You will notice other milestones described on our website that detail FDA’s authority in response to major tragedies such as Elixir Sulfanilamide, Thalidomide, and the Dalcon Shield. We do not consider the highlighting of these milestones as accolades, but rather learning milestones for the medical community, the public and the world. They serve to make FDA even more vigorous and proactive in implementing strategies to identify products that may have hidden cancer causing potential or serious long-term health problems. In light of this historical record our description will remain on the FDA/OWH website.”

Below is what I sent Ms. Henderson, along with the two women she copied on her email to me (Terrie Crescenzi and Deborah Kallgren). Note I also included Jeanne Ireland.

“You are clearly hoping that the general public thinks a ‘contraindication for pregnancy’ was a ‘real benefit to the health of women and their children.’ Hardly. BANNING the toxic, carcinogenic DES would have been the ‘real health benefit.’ The FDA is lying by omission.

“DES should have been banned. There were some doctors in the US who continued to prescribe it after the FDA’s ‘important historical step,’ up until 1980 in some places. And DES continued to be prescribed until the mid-1980s in parts of Latin America, Europe, Australia, and the Third World.

“Some advice: When writing to DES victims moving forward, don’t use phrases like ‘learning milestone.’ That is dismissive of the currently proven effects of exposure which 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’ll be sure to share the FDA’s response with others, seeing how you’re sending this canned response out to others who asked the FDA to remove the offensive DES ‘milestone.’

 “Thanks for caring about women’s health (not!).”

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.


Advertisements

One Response to “The DES (Diethylstilbestrol) Drug Disaster, 40 Years Later: The Tragedy Is Far From Over”

  1. alice October 6, 2011 at 10:00 am #

    Do you think colposcopy is mandatory for all women?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: