THANKS Diana Bianchini for her powerful piece in the HUFFINGTON POST inspired by- and linking- Caitlin’s Post. Welcome first-time readers. Please visit our film website… Thanks also to John Payne, lead singer of ASIA Featuring John Payne, who says that the fight for the DES apology has his “full support.” And THANKS to supporters in AUSTRALIA plus producer TED HOPE for his help on Twitter…
An award-winning screenwriter at international film festivals and labs, Caitlin McCarthy has two feature films in development: “Wonder Drug” with director Tom Gilroy (“Spring Forward”); and “Resistance” with director Si Wall (“The Dinner Party,” premiering November 2010). She also has a TV series treatment, “Free Skate,” which is currently being considered by top production companies.
SORRY SEEMS TO BE THE HARDEST WORD…By Caitlin McCarthy
Politics and apologies. They’ve been on my mind this week, what with Tuesday’s primaries and Elizabeth Searle’s recent blog post “I TAKE THAT BACK”: Public Apology Twists, Two-Steps, Tweets & Tunes by Pastor Jones, Kanye West & more.
I am a big believer in the power of an apology. As such, I have been working jointly with the offices of Senator John Kerry and Senator Scott Brown to secure a long-overdue apology from the US Government for the DES (diethylstilbestrol) tragedy.
DES (diethylstilbestrol) is a toxic and carcinogenic synthetic estrogen that 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 is the world’s first drug disaster, often referred to as the “hidden Thalidomide.” 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.
For decades, Big Pharma claimed DES prevented miscarriages and problem pregnancies. It 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.
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.)
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.
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 alone. One of the mothers raised the question of whether her daughter’s cancer might be connected to DES exposure in utero. 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, including Congressional Hearings, forced the FDA to issue a warning about DES in November 1971. The drug was not banned for human use. DES was contraindicated for pregnancy by the FDA in 1972. It wasn’t until September 2000 that the FDA finally withdrew its approval of DES for humans.
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.
The British Government officially issued a long-awaited apology to the hundreds of survivors of the Thalidomide drug scandal in January 2010. But to this day, the millions of DES victims have *never* received an apology from the US Government or FDA for allowing the DES drug disaster to happen in this country for decades. Also, to this day, not one drug company has ever apologized or accepted responsibility for the DES tragedy. Nevertheless, the drug companies have paid millions in out-of-court settlements and verdicts to DES Daughters and Sons who suffered injuries from their exposure.
DES has unique ties to Massachusetts, hence my approaching Senator Kerry and Senator Brown about the apology. It was at Massachusetts General Hospital in Boston 1971 that the DES cancer link was made. And the late, great Senator Ted Kennedy led DES hearings in February 1975.
I have asked Senator Kerry and Senator Brown to consider finishing what Senator Kennedy helped start and push for a public apology from the US Government to the victims of the DES drug disaster. (I use the word “victims” as some people have died as a result of their DES exposure.) When I met Senator Brown in person this month, he thanked me for my DES advocacy.
A thank you is always appreciated. But an apology from the US Government for the DES tragedy would mean MUCH more to me.
According to Senator Kerry’s office, both Senator Kerry and Senator Brown have reached out to the FDA regarding a DES apology (per my request). Despite these collective efforts, it does not seem likely that the FDA will issue an apology. But the senators are still awaiting an additional reply from the agency and will let me know when they receive it.
Because DES victims have various health injuries as a result of their exposure, a superfund for their health issues would be impossible to implement. However, it would be incredible if money could be designated for DES research. DES Daughters, DES Sons and now DES Grandchildren are like canaries in a 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.
It is my sincere hope that Senator Kerry and Senator Brown help make history by getting the DES apology that millions of women and men have wanted — and deserved — for 39 years.
In case you’re wondering, I have some skin in this game because I am a DES Daughter. In an effort to educate people about DES, I have written a feature film screenplay about DES entitled WONDER DRUG that is currently in development with acclaimed independent director Tom Gilroy (SPRING FORWARD).
If you want to help me fight for the DES apology, here’s what you can do:
** Fill out email forms for Senator Kerry and Senator Brown, cheering on their efforts to secure the DES apology at the following websites. You don’t have to live in Massachusetts or even the US to write to them – your voice on this issue counts! Also, it doesn’t matter what political party you belong to – please write to both of them, as they’re working together on this and comparing notes: http://kerry.senate.gov/contact/ and http://scottbrown.senate.gov/public/index.cfm/contactme. Feel free to copy and paste the message below (or create your own):
“Dear Senator, Please continue to champion an apology re: the DES drug disaster from the US Government. As you know, it is estimated that 5-10 million Americans were exposed to DES, the toxic, carcinogenic drug often referred to as the ‘hidden Thalidomide.’ (Millions more were exposed worldwide.) It is outrageous that the hundreds of Thalidomide victims received an apology from the UK Government in January 2010, while the *millions* of DES victims have yet to receive an apology from anyone: US Government; FDA; or drug companies that knowingly marketed and sold the toxic and carcinogenic drug DES. I look forward to publicly hearing a DES apology from the US Government in the near future and celebrating it with you.”
** 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.
** You can also copy and paste this blog post’s URL to your Facebook page, encouraging your family and friends to contact Senator Kerry and Senator Brown. Email works, too!
** Lastly, post comments of support for the DES apology at the end of this blog post. If the senators and the US Government see there is a demand for this, they’ll listen. There is strength in numbers. To use a political slogan, Yes we can!
Thank you for reading this, from the bottom of my heart.