Fwd: SECOND OPINION FROM REDFLAGSDAILY.COM, OCTOBER 22, 2003

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SECOND OPINION FROM REDFLAGSDAILY.COM, OCTOBER 22, 2003

" Nicholas Regush "

 

 

WEDNESDAY, OCTOBER 22, 2003

 

http://www.redflagsdaily.com

 

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THE SPECIAL EXTRA! PAGE AT RFD

 

SECOND OPINION

 

DES REVISITED

 

The DES story is far from over. This synthetic female hormone whose generic name

is diethylstilbestrol was once promoted as a wonder drug. It was prescribed to

many pregnant women with a history of miscarriage. Doctors also prescribed it

for vaginal bleeding and spotting, for menopause, and for use as a morning-after

contraceptive.

 

Over sixty DES products were on the market between 1941 and 1971, the year it

was linked to clear-cell adenocarcinoma of the vagina and cervix.

 

Now, the offspring of DES mothers are paying a huge price for the use of this

synthetic estrogen, and as A LEGACY OF PAIN points out, " every year scientific

studies reveal new repercussions of the drug, which was taken by an estimated

4.8 million women, who then exposed an estimated 4.8 million children. "

 

The DES legacy is a reminder that the medical community often looks the other

way. As one lawyer puts it in the Washington Post story, " DES was the biggest

nostrum in quackery since snake oil…It never worked. "

 

http://archives.seattletimes.nwsource.com/cgi-bin/texis.cgi/web/vortex/display?c\

=1 & slug=des22 & date=20031022 & query=a+legacy+of+pain

 

A legacy of pain: Offspring pay price for use of synthetic estrogen

By Leef Smith

The Washington Post

 

 

It is with numb precision that Chris Vanselous recounts a long succession of

failed pregnancies. She miscarried six babies before the birth of her daughter,

Jill, the only child to survive her mother's womb.

And for years Vanselous gave credit for that solitary healthy delivery to

diethylstilbestrol, or DES, a drug that she and nearly 5 million other would-be

mothers were prescribed from 1938 to 1971 under the belief that the synthetic

hormone would help them build families where none seemed possible.

" My doctor told me he had the magic bullet, " recalled Vanselous, 68, who was

taking as many as 20 of the small red DES tablets a day when she was seven

months pregnant. " He said I'd have a bigger, healthier, brighter child. "

But DES did not lead to healthier babies, nor did it prevent miscarriages,

according to research that began appearing in 1953. What it did lead to was a

host of health problems for mother and child. Widespread use of DES on pregnant

women was halted in 1971, after a study linked clear-cell adenocarcinoma, a rare

cancer of the cervix and vagina, to those exposed to the drug in the womb.

 

DES resources

 

 

• CDC's DES Update: www.cdc.gov/DES

• DES Action USA: 800-DES-9288 or www.desaction.org

• DES Cancer Network: 800-DES-NET-4 or www.descancer.org

• DES Third Generation Network: des3gen

• DES Sons' International Network: des-sons

 

Other children, like Vanselous' daughter, Jill Murphy, suffered malformed

reproductive organs, which would later lead to increased infertility, tubal

pregnancies and miscarriage, effectively robbing many of the chance to bear

their own children.

Males also affected

 

Exposure to the drug also harmed male children, who face an increased risk for

epididymal cysts — noncancerous growths on the testicles — and varicose veins on

the testicles. Now, research is beginning to emerge about possible risks to a

third generation — the grandchildren of women who took DES. Experts worry that

many in this group — the oldest are young adults — are unaware that they were

exposed to the drug and may be at risk for health complications.

Because of that concern, coupled with the public's fading memory of DES and its

dangers, the Centers for Disease Control and Prevention (CDC) spent three years

developing a public-education campaign. Rolled out in March, DES Update features

a Web site to explain the impact of the drug and disseminate the newest research

to consumers and health-care providers. It includes a tool to help individuals

assess their own possible exposure.

" In a sense this is a very important time in the DES story because our ability

to ask women who took DES — if they did — is passing, and physicians who

prescribed the drug have gone out of practice or their records are destroyed, "

said CDC spokeswoman Marsha Vanderford. " While the opportunity to find out if

you were exposed is expiring, ... the health effects are ongoing. "

Other risks come to light

 

Vanselous recalls she was sitting in a hair salon in 1971, idly flipping through

a women's magazine, when she happened on an article about DES and its newly

established link to vaginal cancer.

She kept the news from her daughter for six years until Jill began to

menstruate, a time when specialists recommended the young girl be examined for

complications. Tests revealed Jill had a malformed cervix, a common result of

DES exposure. Doctors warned that she would live with the threat of vaginal

cancer until her 20s. There were, as far as researchers knew, no other problems

associated with the drug.

But the other risks of DES became clear in 1998 as Murphy, then 34, and her

husband, Luc, began to try to have children.

Murphy repeated her mother's history of failed pregnancies. Tests revealed she

has a T-shaped uterus, a classic symptom of exposure to DES. After three failed

pregnancies, the Alexandria, Va., couple conceded they would have no biological

children.

" I knew about the cancer but never, ever, was I told that I could have fertility

problems, " said Murphy, one of thousands of women who have filed suits against

DES drug makers and won settlements since 1979. " DES took my right to have

children. It took the rights of thousands of women. "

While damage claims have not been easy to prove, almost every case has been

settled before trial, with payouts ranging from $50,000 to $4 million. Publicity

from those lawsuits and years of grass-roots organizing by women's health groups

led Congress in 1992 to create a program of research, outreach and education

about DES.

Every year scientific studies reveal new repercussions of the drug, which was

taken by an estimated 4.8 million women, who then exposed an estimated 4.8

million children.

To date, most of the research has focused on the troubles suffered by daughters

exposed in utero. According to findings published in 2001 in the American

Journal of Epidemiology, these women have a higher infertility rate and are two

times more likely to have a miscarriage or premature labor than unexposed women.

A study released last year by National Cancer Institute researchers showed, at

least preliminarily, that DES daughters over age 40 are 2.5 times more likely to

experience breast cancer than unexposed women in the same age range.

With the exception of testicular cysts, no health effects have consistently been

found in DES sons. But studies sponsored by the National Cancer Institute

continue to monitor health problems, such as the risk of testicular cancer,

among these men.

Third-generation children — the offspring of DES daughters and sons — are just

beginning to reach the age when relevant health problems can be studied.

Research published last year by the Netherlands Cancer Institute suggests that

hypospadias — a misplaced opening of the penis — occurred 20 times more

frequently among third-generation sons.

Experts urge caution about the future. In laboratory studies of elderly

third-generation DES-exposed mice born to DES daughter mice, an increased risk

of uterine cancers, benign ovarian tumors and lymphomas was found.

Third-generation male mice were shown to be at risk for certain

reproductive-tract tumors.

Researchers continue to look for evidence of reproductive abnormalities and

cancers among third-generation DES women.

A report published in August in the Journal of Pediatric Hematology/Oncology

suggested a possible link between a 15-year-old girl's rare case of small-cell

carcinoma of the ovary and her maternal grandmother's use of DES.

It was English biochemist E. Charles Dodd who in 1938 synthesized the first

orally administered synthetic estrogen. Two years later, the Food and Drug

Administration (FDA) approved the drug, DES, as a treatment for menopausal

symptoms.

DES started to become popular in 1947, after publication of an article by

Harvard University professors George Smith and Olive Watkins Smith, who

theorized that high doses of DES could prevent miscarriage.

" They couldn't have been more wrong, " said Pat Cody, founder of DES Action, a

nonprofit group for people exposed to the drug. " Not only did it not prevent

miscarriages, but DES mothers had more of them. "

The truth about DES didn't surface until 1953, when William Dieckmann, a doctor

at the University of Chicago's Lying-In Hospital, conducted the first

controlled, double-blind study on the use of DES during pregnancy. His

conclusion: DES was ineffective against miscarriage.

" But (they) kept right on prescribing, " said Cody, 80, who was put on DES two

years after Dieckmann's study was published. She took the pills four times a day

until her 37th week of pregnancy. In total she ingested more than 10 grams of

DES — as much estrogen as is found in 500,000 of today's low-dose birth-control

pills, she said.

It would be nearly 16 years before the research of Arthur Herbst, a physician at

Massachusetts General Hospital, linked the drug to eight rare cases of vaginal

cancer in DES daughters.

The FDA responded in 1971 by issuing a bulletin to physicians. It said DES

should not be prescribed for pregnant women. Paving the way for other

hormone-replacement therapies, DES was later used for hundreds of treatments —

from prostate cancer and acne and menopause symptoms, to suppressing breast milk

and stimulating livestock growth. Today it is used mainly in veterinary medicine

to treat incontinence in dogs and cats.

What is the age limit?

 

Carol Perry, who lives in Fairfax, Va., with her husband and two adopted

children, is co-chairwoman of the DES Cancer Network, a support group that links

more than 300 women.

" The problem now is that a lot of doctors are telling (DES daughters) that if

they've passed a certain age, they don't have to worry about cancer anymore, "

Perry said. But we don't know what the upper age limit (for developing cancer)

is. " She was caught in the same cycle as her mother had been.

Washington lawyer Aaron Levine has handled hundreds of lawsuits claiming damages

from the drug; today he represents 120 DES plaintiffs. The courts, he said, are

now grappling with whether liability should extend to third-generation injuries.

" DES was the biggest nostrum in quackery since snake oil, " Levine said. " It

never worked. But DES hasn't gotten the play it should have because the medical

community looked the other way. They didn't want to admit the mistake they

made. "

Jill Murphy sued Eli Lilly, once the largest DES distributor, in 1999, and the

company settled. The amount she won remains confidential, she said, but the

money will enable her and her husband to adopt a child later this year.

About this Murphy is matter-of-fact: " Someone had to pay for family-building, "

she said.

 

 

 

 

Also:

 

DES CANCER NETWORK

 

DES ACTION USA

 

-Nicholas Regush

 

 

 

 

 

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