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One of America's Deepest, Darkest Family Secrets: The DES Drug Disaster

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All families have secrets. Some stay buried forever. Some rise to the surface with each successive generation. Today as a culture, country (family) and an evolved modern society, we realize that education can stop the conspiracy of silence, generate changes and ultimately lead to learning, healing and forgiveness. When secrets are revealed, apologies need to happen.

For decades, the United States Government has been keeping the deep, dark secret of DES (diethylstilbestrol) from Americans so well that most people have never heard of it and don't know that it was the world's first drug disaster.

There are 5-10 million DES-exposed Mothers and Children in the U.S. alone. I personally didn't know anything about DES until my friend and screenwriter, Caitlin McCarthy, introduced me to Wonder Drug , her award-winning feature film screenplay that is currently in development with acclaimed independent director Tom Gilroy (Spring Forward).

Last week, Caitlin sent me her latest blog entitled "Sorry Seems To Be The Hardest Word: Where Is the Public Apology for DES, The World's First Drug Disaster?" After reading about the history of DES and the millions of Americans it has affected and is still affecting, I needed to write this blog in the hopes of bringing more awareness about this drug disaster, enough so that the U.S. Government will issue a long overdue apology for its role in this tragedy.

So what, exactly, is DES? It's a toxic, carcinogenic synthetic estrogen that was prescribed to millions of pregnant women for decades: from 1938 until 1971 in the United States, and until the mid-1980s in parts of Latin America, Europe, Australia, and the Third World. Never patented, it was sometimes given as an injection, but primarily it was prescribed in pill form and was sometimes even included in prescription prenatal vitamins.

Numerous pharmaceutical companies like Eli Lilly marketed and sold DES under 200 different names, claiming it prevented miscarriages and problem pregnancies. Click here for a historical timeline. No controlled studies were ever conducted to determine the effectiveness or safety of DES for use during pregnancy, even after some scientists started questioning its effectiveness 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 because the drug was a top moneymaker.

In the late 1960s, clear cell cancer (CCA, a rare cancer of the vagina) was diagnosed in teenage girls -- an age group never before found to develop it. Up until then, only elderly women developed CCA. The DES cancer link was published in the April 1971 issue of New England Journal of Medicine, but the FDA did not act on this information until public pressure, including Congressional Hearings, forced it to issue a warning about DES in November 1971. In 1972, the FDA advised against taking DES during pregnancy, but never banned DES for human use. It wasn't until September 2000 that the FDA finally withdrew its approval of DES for humans.

Unfortunately, no known medical test has been developed that can detect DES exposure. However, the CDC has an Interactive DES Self-Assessment Guide to help you assess whether you might have been exposed to DES between 1938 and 1971. 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.

By not publicly apologizing for and acknowledging the DES drug disaster, the U.S. Government is ignoring a serious ongoing problem and hoping it goes away, thereby condemning millions of people exposed to DES to further danger. The American people have a right to know about the widespread exposure to this toxic, carcinogenic drug, which many times happened without their knowledge.

A U.S. Government apology would also raise global awareness about DES. Medical schools and physicians would start educating themselves and others about the effects of exposure, and the public would finally begin receiving the healthcare attention and treatment it deserves surrounding DES. The UK Government's apology to the hundreds of Thalidomide victims in January 2010 can serve as a model for the U.S. Government's apology to the millions of DES victims. (DES is often referred to as the "hidden Thalidomide.")

You can help secure the long overdue DES apology by urging Senator John Kerry and Senator Scott Brown in Massachusetts to finish what Senator Ted Kennedy helped start through his DES hearings in February 1975. Thanks to Caitlin McCarthy, Senator Kerry and Senator Brown's offices are jointly looking into a DES apology from the U.S. Government.

Please write to both Senator Kerry and Senator Brown, saying you support the DES apology, as they're working together on this and comparing notes. It doesn't matter where you live in the United States or what your political party affiliation is -- your voice on this issue as an American counts! If you'd rather place a phone call, here are the numbers for their DC offices: Kerry (202) 224-2742; and Brown (202) 224-4543.

Together, we have the power to stop the conspiracy of silence, educate others, and save lives. Please join me, Caitlin and others in encouraging Senator Kerry and Senator Brown to champion and obtain the DES apology from the U.S. Government today.