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DES Info: The wonder drug that can kill - Diethylstilbestrol (DES)

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DES Info: The wonder drug that can kill

 

I had one son, and two miscarriages after him," said the JL Manhattan woman. "I was told that periodic injections would enable me to have what I so desperately wanted — another baby. After she was born — and she was so beautiful — the doctor suggested names for her. "He said, 'Why don't you name her after the reason she is here? I guess Diethylstilbestrol is a long name for a little girl . . . Call her Silby or Silby for short.' "That is how I remembered the name of the drug I took.

 

Almost twenty years later, when my daughter was a sophomore at Boston University, I came across a caption in the newspaper, which read, 'DES Daughters Experiencing Cancer.' "I put down the paper and cried for hours. I was terrified and guilt-ridden. What had I done?" Diethylstilbestrol (DES) is a synthetic form of estrogen. Between 1941 and into the 1970s it was administered to approximately two million pregnant women.

 

Gynecologists then believed the drug could prevent miscarriages, and often earmarked it for their patients who experienced bleeding or diabetes during pregnancy, or who had previous miscarriages. DES came to be known as the "wonder drug." It had thirty to forty percent success rate in saving babies. Dr. Richard Shatz, a Montreal gynecologist says the widely held theory in the 1950's was that miscarriages occurred because of low estrogen levels in expectant mothers. So DES, the synthetic estrogen, seemed like a miracle cure. The drug was distributed with a free hand by the drug companies that manufactured it; even though those companies knew as early as 1941 that DES caused cancer in tests on laboratory animals.

 

In the early 1970's, people started asking whether DES was as effective as it was supposed to be. Coincidentally, in 1971, was the discovery of an extremely rare form of vaginal cancer, clear-cell adenocarcinoma, found in females between the ages of fifteen and twenty. Arthur Herbst, a Boston physician, found an eerie similarity among the victims of the new cancer: their mothers had each taken DES during pregnancy.

 

Today, the DES controversy is beginning to attract a great deal of publicity in the press and elsewhere, as a number of lawsuits are being filed by DES mothers and daughters across the country—pressing charges against the doctors, drug companies, and insurance firms. Clear-cell adenocarcinoma strikes less than one percent of the DES daughters. According to nation-wide health statistics in the spring of 1977, 350 daughters between seven and 29 were diagnosed as victims of the cancer. Detected in its early stages, the disease can be successfully treated. But advanced forms of clear-cell adenocarcinoma require vaginectomies: surgical removal of the **bleep**. What is prevalent among DES daughters, striking between 90 to 95 percent, is adenosis: patches of glandular cells, normally located exclusively in the uterus, found on the cervix and vaginal walls.

 

Though this benign DES symptom causes no pain, it may increase the daughter's chances of sterility and cancer. Victims of adenosis are required to have examinations twice a year to keep a check on any abnormal cell conditions. Because adenosis can't be detected with a simple Pap smear—it requires a "quadrant Pap test," which scrapes the four vaginal walls— many DES daughters do not know they are victims. Their ignorance could tip the delicate physical balance the wrong way if those victims use diaphragms or IUDs, since those birth control devices can affect the abnormal patches of cells, resulting in sterility or cancer. And significantly common, among one-third of DES daughters, are vaginal or cervical ridges.

 

Many daughters have an abnormal, T-shaped uterus, making it nearly impossible to carry a baby full term. "Erosion" of the vaginal tissues is often a problem of daughters who have an adenosis-like condition on the cervix.

 

The daughters aren't the only ones who suffer from DES. Sons, too, sustain the consequences of the "wonder drug," although less is known about its effects on males, because the symptoms can be attributed to factors other than DES. Current studies show non-cancerous changes of the **bleep** and testes in some DES sons, cysts, undescended testicles, an undersized **bleep**, and a low sperm count, are not uncommon among DES sons. Some suffer from impotence and sterility. They run a higher chance of testicular cancer.

 

The mothers who took DES may also run higher risks of having cancer, particularly breast cancer, though her uterus, cervix, or ovaries may be susceptible as well. Doctors warn DES daughters and their ovaries may be susceptible as well.

 

Doctors warn DES daughters and their mothers not to take any estrogen supplements, such as birth control pills, the "morning after" pill, or certain menopausal medication, for fear of increasing the already-high chance of cancer. "To me, the effects of DES area as devestating as the thalidomide babies," said another mother who had taken the drug.(The woman, as well as many other DES mothers quoted here, were interviewed on a hotline and therefore asked to remain anonymous.)

 

"Maybe more so. It was given for so long, and all the facts are not yet in. However, the effects of thalidomide are immediately detectable, says Dr. Audry Sheehy, of the Barnard Health Service. The symptoms of DES remain dormant for years, she adds, and that's frightening. Regular examinations and preventative measures have checked what could have been dangerous conditions in many DES babies. The problem is that many victims of the drug remain ignorant. Many women who trustingly and innocently took the drug had no idea what it was or what its effects might be.

 

And a lot of doctors, ashamed of once administering DES, never told their patients the name of the little pills prescribed during pregnancy. Some doctors have allegedly destroyed files relating to DES prescriptions. And some mothers who know now that they took DES choose to ignore the situation. Plagued by guilt, they keep the secret from their children, who are totally unaware of the time bomb that might be ticking inside their bodies. These women aren't malicious, simply tortured with remorse.

 

The psychological effects of DES often have a profound effect on them, and on their children, when and if they learn the truth, sometimes anger and resentment characterize the child's reaction. "I can feel no anger toward my mother," said Barbara M., 28, a DES daughter. She was a victim of adenosis, and lost a baby during the eighth month of pregnancy in 1978. "She took DES because she wanted me. She had two miscarriages before me, and I am an only child. I'm lucky to be here, altogether." The psychological effects of DES can be devastating for the child as well. "The psychological problems of the DES daughter go beyond anger," said Mirriam Wallach, who took DES while pregnant. "My daughter has a serious boyfriend, and I don't know if she has told him about her condition. I think she may fear rejection. The daughter fears more than rejection. She fears for her life. "I experience a great deal of anger and anxiety. Sure, the risk of cancer is small, but it's a hell of a lot more than my friends have," said Amanda Balanchine, a DES daughter. "Right now, I'm trying to work hard  to mitigate my rage, and I'm taking care of my health in general. My mother shouldn't feel the great guilt that she does, although she, too, profits from sharing her feelings with other DES mothers. "I intend to have a normal life.

 

After all, the chances of adenocarcinoma is one in a thousand, the chance of breast ■ cancer is one in fifteen, and that doesn't affect my life. I take care of my whole body." "Mothers will sometimes mention their DES sons, but nobody seems to know who they are," said a DES parent. "Daughters tend to join the organization and identify themselves, though sons are reluctant to. I suppose this has something to do with being macho. Nobody wants to admit to being impotent or having an undersized **bleep**."

 

And the fathers? Barely mentioned. "What about the DES fathers?" one woman wrote, as a postscript to her "Voice" editorial. "My beloved husband is as grief-stricken about all this as I am." The members of a family with a DES victim have various reactions. The emotion common to nearly all of those families, however, is the fury directed at the companies that manufactured and distributed DES from the 1940's to the 70's. Knowing there was doubt about the safety of the drug, the companies widely, and successfully, marketed it. In 1948, only about 15 drug manufacturers were churning out the "wonder drug."

 

By 1951, that number jumped to 300. The drug companies produced different shapes and colors of the pill DES, which is why mothers are now asked to remember the color of the drug they took. But until recently, DES victims could only rage helplessly against the manufacturers, unable to bring charges against them, partly because it's so hard to pinpoint which drug came from which company.

 

The turning point came in July 1979, with the case of Bichler vs. Eli Lilly Company. Joyce Bichler, 18, went to her doctor for a routine pelvic examination; what he found was case of clear-cell adenocarcinoma so advanced that her uterus, Fallopian tubes, appendix, and left ovary had to be removed. Bichler, knowing that her mother had taken DES, couldn't prove that the pills were made by Eli Lilly, but sued on the grounds that the company was a wide distributer of an inadequately-tested drug. And the New York State Supreme Court in the Bronx decided in Bichler s favor, ruling that Eli Lilly Co. must pay her $500,000 in damages, making her the first DES daughter to successfully sue a pharmaceutical company.

 

"I believe my victory was not only important for me, but for all DES daughters," Bichler wrote later, in the "Voice" newsletter. "For the first time, we have established in a court of law that DES causes cancer, and that the drug companies should have foreseen that it was going to cause cancer in the offspring of women who took the drug. We also showed that all pharmaceutical companies are responsible for what happened, even though we could not prove who manufactured the DES my mother took. "I suspect that because of this victory, many DES daughters will now be able to get their cases into court, and many will now come forward to bring action against the pharmaceutical companies who brought this tragedy upon us." And in August, one month later, Anne Needham, 20, won her suit against New' Jersey's White Laboratories. Unlike Bichler, Needham, a Chicago resident, had clear records of the drugs her mother had taken during pregnancy. The court found White Laboratories negligent in its administration of DES, and was charged and forced to pay $800,000 to Needham, who was also a victim of adenocarcinoma in a late stage. The court ruled that Needham was "scarred physically, as well as emotionally, for life." Now, a series of suits are being filed throughout the United States. The Michigan attorneys who handled Needham's case are currently working on the suits of approximately 315 DES daughters from 18 states. (The daughters are failing not only against drug companies, but insurance companies as well. Inspection for and treatment of adenosis is expensive, and few insurance companies have consented to cover the charges.) The plethora of lawsuits involving DES brings the previously little-publicized drug into the limelight, which, the DES victims hope, will enlighten women who might now be ignorant of having DES related problems. An appalling number of women know absolutely nothing about DES, including college women. About five years ago, the question was added to the Barnard Medical Questionnaire: "Did your mother take DES when she was pregnant with you?" In 1977, out of 711 responses to the question, only seven gave affirmative answers. In fall, 1978, none of the 511 women answered "yes"; in the spring, only one out of 322 responses affirmed that her mother had taken the drug. Officials at the health service suspect there are more DES daughters at Barnard than there were positive answers to the questionnaire. The victims may not know they are victims, though. The officials predict that, in the next few years, an increasing number of women will answer that question, "yes." DES Info: Our mission is to continue to provide information to the DES community, share the many stories of the DES exposed and to continue to push for the healthcare screening and healthcare needed by the DES Exposed

 

Columbia Daily Spectator, Volume CIV, Number 53, 29 November 1979 Author: LISA WOLFE #Diethylstilbestrol #TheDESTragedy DESInfo411@gmail.com

Karen M. Fernandes
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