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.
Follow Diana Bianchini on Twitter: www.twitter.com/dimodapr
I immediately called Senator Scott Brown and Senator John Kerry's offices after reading the article about the US Government apologizing for infecting Guatemalans with STDs in the 1940s. I promptly received a message from Senator Brown's office, which said that in light of my phone call, both offices are jointly discussing what else they can do with the FDA, and that they are jointly "trying to move forward" with the DES apology.
Please email and/or call both of the senators' offices, telling them that the millions of DES victims deserve an apology like the one given to the Guatemalan victims. Use these sites for the email:
http://kerry.senate.gov/contact/
http://scottbrown.senate.gov/public/index.cfm/contactme
Their DC offices can be reached at: Kerry (202) 224-2742; and Brown (202) 224-4543.
Thank you!
Here is the STD/US Government apology link: http://today.msnbc.msn.com/id/39456324/ns/health-sexual_health/
Pam-France
Caitlin McCarthy received the following email today from Senator Brown's office (copying Senator Kerry's office):
"Hi Caitlin, Unfortunately, and despite our offices many attempts to raise awareness of this issue, it does not appear that the US Government -- including the FDA -- will issue a formal apology at this time. If you would like to continue to pursue this matter, we suggest that you consider working with members of the Senate HELP Committee, which has jurisdiction over the FDA. The Senate HELP website can be found here: http://help.senate.gov/. We wish we could have provided you with the resolution that you desire and wish you the best of luck in your future efforts. Thank you."
Please consider contacting the Senate HELP Committee about the DES apology. Together we can raise awareness about this very important, and still timely, issue.
Still, an "apology" means nothing to me. Especially if I have another cancer. Three out of four ASCUS Pap Tests have me quite worried.
ASCUS = Abnormal Squamous Cells of Unknown S (I forgot... thought it was Origin, but that doesn't start with an "S")
Back to the doctor on Friday afternoon.
An Apology, seems like a pat on the head after a lifetime of Teratogenic deficits. What about an HONEST ANSWER TO OUR RARE BREAST CANCER. Yes, I'm angry. So many have suffered, been told lies for soo many years. I lost soo much. Maybe allowing research for OUR Breast Cancer is a whole lot better than a canned apology. An apology just seems like an insult after So Many Have Tried Before.
Would the CDC retract/correct their responses on DES never causing any teratogenic effects, before or after the apology?
Some of you are kicking a gift horse in the mouth. You should be thrilled that someone is championing your cause and trying to get an apology.
Your complaints are all about you. SIGH. Think of the bigger picture, if you can, about what this apology would mean for the world.
My mother, like many other women, was prescribed DES in the late '50s, after having three miscarriages. She went on to have four children. Granted, maybe DES was just a placebo effect for many, many women who had miscarriages, since DES was shown to not prevent miscarriages. But, she took it through her next three pregnancies.
Neither my sister nor I have had cancer, though I had extra gyn exams in my 20s
There were hundreds if not thousands of articles about DES in major magazines and newspapes in the early '70s. By the early '80s, when some of us started to have children, there were a number of articles indicating that DES daughters were more likely to have their babies prematurely and have more miscarriages. In the mid-'80s, we started to hear that some DES sons had problems as well.
So glad you're a doctor who is caring for DES victims. You have a terrific bedside manner.
Clearly you are perfect and have never had to apologize for anything. But the rest of the world understands the power of an apology. They exist for a reason.
The problem is - the women who took DES and did not know it. Most women did know and did tell their daughters. In the '70s and '80s, all you had to do was read one of the most mainstream women's magazines - Ladies Home Journal, Redbook, and some that weren't so mainstream, like Ms, to read quite a bit about DES.
As for the US Government apologizing for the DES drug disaster...you are aware that people can't sue the government, right?
DES victims can sue the *drug companies* that knowingly marketed and sold a toxic, carcinogenic drug to unsuspecting pregnant women for decades. The drug companies have already paid millions in verdicts and out-of-court settlements for their criminal actions.
An apology from the US Government would be just that: An apology. Amazing how the UK Government continues to run after issuing its Thalidomide apology in January. The same would happen in the US if our government apologized for alowing the DES drug disaster to happen.
How ignorant and self-centered of you not to see what this blog post is really about. I have to wonder, do you work for Eli Lilly? You're awfully quick to dump on the DES victims.
Also, you are wrong about people suing the government. Americans can't do that.
DES victims *can* sue the drug companies that criminally marketed and sold a toxic, carcinogenic drug to unsuspecting pregnant women for decades. The drug companies have already paid millions to victims. Amazing how they're still in business (if you're worried about that for some bizarre reason).
I fail to see how the DES victims don't deserve an apology from the US Government for allowing this tragedy to happen. The UK Government stepped up to the plate and apologized to the Thalidomide victims. Their government hasn't stopped working. The US Government will continue to work if it does the right thing and apologizes to the DES victims.
http://www.youtube.com/watch?v=eZkDikRLQrw&feature=player_embedded#!