A DES Victim Tells the Story of the Largest Drug Disaster in History

[This post was written by my friend, a DES victim named Marcia Love. It was written for her blog IWantAnApology.com. While I was not a DES daughter, I was exposed in utero to heavy amounts of other synthetic steroid hormones, and I identify with her plight and outrage at the lack of accountability in the medical and regulatory systems regarding this violently toxic pregnancy drug that was given recklessly to millions of gestating women. I'm proud to say I am now sponsoring a study on grandchild (germline) effects of DES on development of those offspring of exposed gametes. -Jill Escher]

They Made Us Freaks And Gave Us Cancer!
The True Story Of The Largest Disaster In Pharmaceutical History

by Marcia Love

This page is about the drug Diethylstilbestrol.

When you think about the largest or greatest drug disaster most people think of Thalidomide which was certainly a devastating catastrophe. The heartbreaking pictures of those born without limbs or those with deformed limbs can never be forgotten by those who have seen them.

In terms of the number of people affected Diethylstilbestrol was far worse. Th CDC estimates that over ten million people were exposed.

There are a few very profound differences between the two drugs.

First, the physical defects from Thalidomide were very apparent and immediate. A baby born with no limbs draws attention. One born with a 40x increased risk of cancer 20 years down the road not so much.

Next we have the fact that Thalidomide was not distributed worldwide so the number of people exposed was far less. The number of people exposed to Thalidomide is in the tens of thousands.

Then there is the fact that Thalidomide is still being sold and in fact many studies have for instance shown it to be effective in the treatment of multiple myeloma, especially when used with other drugs.

And of course Thalidomide was never sold in the U.S. 

For these reasons every scientist on the planet and most lay men as well know about Thalidomide but very few know about Diethylstilbestrol.

Know that the pharmaceutical industry here in America operates the same way the tobacco companies did foryears. Deny responsibility, Deny your product kills and pay shills to promote your product in the face of increasing evidence which says that it indeed kills.

In 2012 Gruenenthal Group (The company which sold Thalidomide) to mothers and their children for the tragedy.
No such apology has ever been offered for Diethylstilbestrol.

In 2010 then senators John Kerry and Scott Brown sent a letter asking for an apology from the FDA. The response they got was something like “we are making sure that doesn’t happen again.”

They never got their apology…

Diethylstilbestrol was discovered in England at Oxford University in 1938 by Sir Charles Dodds.

It was found to have have estrogen like effects and was marketed as a cheap synthetic replacement for estrogen. The supposed premise that it was sold on was that since it behaved like estrogen it could be used as a cheap synthetic estrogen.

As it turns out Diethylstilbestrol is not a synthetic estrogen but an endocrine disruptor.

Dodds warned of intersex and cancerous outcomes and the FDA initially denied approval of the drug.

This did not stop the pharmaceutical companies from aggressively campaigning to get the drug approved. The reason? It was a free drug that anyone could manufacture and sell. English lay at the time forbade money to be made on anything discovered with public funds.

The drug companies pooled their resources and formed what was known as the Small Committee, hiring former Eli Lilly CEO Don Carlos Hines to represent them.

Soon there was an article in the Readers Digest stating that a new wonder drug for treating post-menopausal symptoms was available and was just awaiting the approval of the FDA.

Such articles asked readers to send letters to their congressmen and even the president. The aggressive campaign worked  and by 1940 the FDA had approved it for use in treating gonorrheal vaginitis, menopausal symptoms, atrophic vaginitis and lactation suppression. The gonorrheal vaginitis indication was removed when penicillin was discovered.

At the behest of their pharmaceutical representatives doctors also began prescribing Diethylstilbestrol off label for the purpose of preventing miscarriages. As with the other four approved indications no proof was ever provided as to the efficacy of the drug for this purpose.

Scientific method was not widely used at this point in history because the FDA did not yet require it even though it was standard practice as early as the late 1930’s. So the MD was easily convinced by the affable drug rep to prescribe it for his at risk patients without any proof that it actually worked.

Off label prescription of Diethylstilbestrol for preventing miscarriage ended in 1947 when the FDA approved it for that use after years of pressure from the pharmaceutical companies. They convinced doctors and patients alike to write letters attesting to the safety and effectiveness of the drug.

Then came George and Olive Smith two “researchers” from Harvard who began advocating for an increasing regimen ending at 125 mg/day during the final month of pregnancy. At the time Eli Lilly was selling it in doses of .1,.5 and 5 mg. The most outrageous thing is that there was absolutely no proof of efficacy of these large doses because the scientific method had yet to be employed on the drug!

So then Bristol-Myers Squibb sought and and was granted permission to market and sell Diethylstilbestrol in doses of 25 mg and 100 mg. 

As a fetus develops it’s hormonal needs vary by the micro-second and it is impossible for anyone to know what those exact needs are.  DES is a powerful endocrine disruptor and introducing it into the womb at random times leads to arbitrary results. 

Some women ended up with a T-Shaped uterus, some did not. Some sons became transgender, some did not. There are commonalities in mothers, sons and daughters however.

Finally in 1951 a double blind study was conducted at the University of Chicago and Diethylstilbestrol was proven to have to no effect on the prevention of miscarriages.

This fact did not slow down sales however. Coming from someone who was born in 1956 and exposed to the Smith & Smith regimen you can imagine how heartbreaking that fact is.

The person I was meant to be was never born and my body was permanently altered before I was born for no reason other than profit.

Study after study proved that Diethylstilbestrol did absolutely nothing to prevent miscarriages but yet the FDA still allowed it to be sold.

By the late 1960’s six of the seven leading textbooks on Obstetrics and Gynecology said Diethylstilbestrol had no value in preventing miscarriages but it wasn’t until 1971 when the New England Journal of Medicine published a study which found an astounding link between vaginal clear cell adenocarcinoma and in utero exposure to Diethylstilbestrol in women and young girls. Prior to this that type of cancer was only found in older women and even then only rarely.

Even after it was proven to cause cancer the FDA only removed prevention of miscarriage as in indication for Diethylstilbestrol use and added pregnancy as a contraindication for Diethylstilbestrol use.

The FDA never banned DES outright and other indications were allowed to stand but as evidence mounted the FDA started taking more action against it and in 1975 ordered 25mg and 100mg tablets withdrawn from the market.

In 1978 the FDA removed postpartum lactation suppression from their approved indications and by the 1990’s the only approved indications were for advanced breast cancer in postmenopausal women and for the treatment of advanced prostate cancer.

Finally in 1997 the last U.S. manufacturer Eli Lilly stopped making and marketing Diethylstilbestrol.

For 60 years Diethylstilbestrol was prescribed for made up reasons without any scientific data whatsoever to warrant it’s prescription. If it wasn’t so heartbreaking it might be laughable some of the reasons it was prescribed.

Starting in the 1950’s and continuing through the 1970’s Diethylstilbestrol was prescribed for “excessive height” in prepubescent girls, particularly in Australia.

The CDC estimates that 10 million people were exposed between 1938 and 1971 the vast majority for the prevention of miscarriage ruse. That means  5 million DES mothers gave birth to 2.5 million DES sons and 2.5 million DES daughters.
From the CDC’s website:

“More than 30 years of research have confirmed that health risks are associated with DES exposure. However, not all exposed persons will experience the following DES-related health problems.

• Women prescribed DES while pregnant are at a modestly increased risk for breast cancer.
• Women exposed to DES before birth (in the womb), known as DES Daughters, are at an increased risk for clear cell adenocarcinoma (CCA) of the vagina and cervix, reproductive tract structural differences, pregnancy complications, and infertility. Although DES Daughters appear to be at highest risk for clear cell cancer in their teens and early 20s, cases have been reported in DES Daughters in their 30s and 40s (Hatch, 1998).
• Men exposed to DES before birth (in the womb), known as DES Sons, are at an increased risk for non-cancerous epididymal cysts.

Because a link to cancer was first discovered in DES Daughters most of the research has focused on DES daughters.
In addition to causing cancer Diethylstilbestrol is a known teratogen, that is it is capable of causing physical malformations to those exposed in utero.

DES exposed daughters have a higher risk of reproductive tract abnormalities including epithelial cell changes known as vaginal adenosis, an increased cervical transformation zone and uterine abnormalities such as a T-shaped uterus.
In 2005 Dr Scott Kerlin published the results of an on-line survey of DES sons.

Out of 500 surveyed 150 men reported gender identity issues. Looking at the math:

150/500 x 2.5 million = 750,000 male to female transexuals were artificially created by the pharmaceutical industry.
Estimates of the natural occurrence of transexualism was somewhere between 1 in 5,000 to 1 in 70,000 depending on who you believe. Sill noting compared to the 3 in 10 you get when administering DES into the womb.

I am a DES son and there is virtually no help out there for me. I have a microphallus, ovaries, intermittent gender dysphoria and a whole lot more.

I am demanding an apology from the FDA, Eli Lilly and Bristol-Meyers Squibb and Harvard University.

Because of their blind pursuit of profit, ignoring all scientific proof of the harm their products do to developing fetuses and refusing to take responsibility I and millions of others have suffered greatly and have led miserable lives.

Their greed has caused me life-long pain and humiliation and ensured I would never find the happiness our constitution allows us to pursue.

It is time to fight back…

IwantAnApology.com