DES: Gone but not forgotten

DES: Gone but not forgotten

Sometimes it takes more than cancer, more than birth defects and more than overwhelming medical evidence.

Sometimes it takes years of pain and persistence to remove a dangerous drug from pharmacy shelves.

Pharmaceutical giant Eli Lilly removed the drug diethylstilbestrol, or DES, from the market this past summer. For the millions of men and women already harmed by DES, consumer action groups say, the news comes 59 years too late.

From about 1938 to 1971, diethylstilbestrol, a synthetic, estrogen-like compound, was given to about 5 million pregnant women in the United States in the belief that it would prevent miscarriage, especially if the women had a previous history of miscarriage, bleeding during pregnancy or diabetes.

DES was thought to increase the chances of a successful pregnancy, but studies as far back as the 1950s have shown differently. When given in the first five months of pregnancy, the synthetic hormone interferes with the baby’s development, affecting its reproductive, immune and skeletal systems. Consequently, daughters of DES-treated mothers faced a host of fertility problems as they matured.

Complications included changes in vaginal and cervical tissue, deformed or Tshaped uteri, miscarriages, ectopic (or tubal) pregnancies, infertility and even a rare vaginal cancer called clear-cell adenocarcinoma.

The nightmare legacy of DES extended to the estimated 2.5 million sons of DES mothers as well. “They may have undescended testicles, epididymal cysts [small lumps on the epididymis on top of the testes] and an increased risk of testicular cancer,” said Michael Freilick, founder of the DES Sons Network, a support and educational organization for the sons of DES-exposed mothers.

Officially, Eli Lilly cited the lack of raw material as the reason for the halt to the production of DES. Unofficially, maintain consumer advocates, pressure and proposed legislation dampened the drug company’s desire to continue with DES. “It’s a proven carcinogen despite Eli Lilly’s arguments that DES is safe and effective,” said Pat Cody, program director of DES Action, an Oakland-based consumer action group dedicated to DES awareness.

“The horror stories we hear are enough to make you want to chew up nails and spit out tacks,” said Cody. One woman whose mother was given DES underwent three surgeries, in vitro fertilization and extensive drug therapy only to find out six years after she started that she would never be able to conceive. Yet many in the medical community still are unwilling to attach any significance to DES exposure and infertility.

Sadly, many doctors dismiss a history of DES exposure as the cause of their patients’ conditions. Freilick was one of those patients. “When I told my doctor that I was a DES son he said, `Forget it.’ He said it had nothing to do with my testicular cancer.”

In its heyday during the 1950s and 1960s, DES was manufactured by more than 200 drug companies. It was even used overseas on U.S. military bases. Although the drug has been used more recently in the treatment of prostate cancer, DES’ track record is far from sterling.

“We’ve heard reports that the men taking DES as part of their prostate cancer therapy ended up with breast cancer,” said Cody.

Although DES is gone from the shelves, consumer advocate groups warn that any optimism should be tempered with caution. Many health professionals are still not convinced of any DES danger. And the drug’s manufacturer, Eli Lilly, has stepped up its advertising to protect its reputation. While it asserts that the drug does not cause cancer, Lilly is reportedly paying out-ofcourt settlements in the millions for DES-related lawsuits.

Even though the drug was approved for the suppression of lactation in women who decline to breast-feed their babies and as a hormone replacement therapy, DES opponents claim it’s a useless and dangerous combination of chemicals. “We don’t need DES,” says Cody. “It’s not estrogen, it’s an estrogen-like compound-not even the real thing. If it disappeared from the face of the earth tomorrow, no one would even miss it.”

Copyright People’s Medical Society Dec 1997

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