The Tragic Legacy of DES

The Tragic Legacy of DES

Canadian Reader’s Digest, March 1985
Feature, 1900 words

When Shirley Simand became pregnant in 1960 after five years of trying and one miscarriage, she turned to a widely used prescription drug that some scientists suggested would be helpful in preventing miscarriages. On November 1, 1960, Mrs. Simand gave birth to a healthy daughter.

A quick, outgoing child, Harriet Simand sailed through school, studied for a year at McGill University, then decided in 1981 to switch to Trent University in Peterborough, Ont. Before she left home in August, Harriet had her first Pap test. One week after she arrived in Peterborough, she was asked to return to Montreal for more tests.

A biopsy revealed clear cell adenocarcinoma, a rare cancer of the vagina seldom seen in women her age. In the previous ten years, numerous articles about it had appeared in medical journals, and her Montreal physicians suspected the link to Harriet's cancer was the synthetic estrogen, diethylstilbestrol (DES), apparently the drug her mother took during pregnancy.

The doctors referred Harriet to colleagues in the United States, where since 1971 cancer of the vagina and cervix had been diagnosed in almost 400 of the two to three million daughters exposed to DES. In Los Angeles Harriet had surgery to remove her vagina, uterus and lymph nodes. This was followed by six weeks of daily radiation treatments at the Royal Victoria Hospital in Montreal. Although she knew that the five-year survival rate for DES daughters with her stage of cancer was 80 percent, Harriet returned to university in January depressed and exhausted—but determined to find out more about DES.

The drug was developed in England in 1938, and its foremost advocates were a U.S. husband-and-wife team at Harvard University, gynecologist George Van Siclen Smith and biochemist Olive Watkins Smith. Their landmark papers of 1946-1949, published in the American Journal of Obstetrics and Gynecology, reported that the drug would increase chances for successful pregnancy in women who had previously miscarried. Doctors began prescribing DES under hundreds of brand names to several million pregnant women.

Startling connection. But a 1953 study of 2000 women at the University of Chicago, the first carried out with modern scientific controls, showed that DES did not prevent miscarriage; on the contrary, it was associated with increases in premature labor and a higher rate of abortions. Despite this study, the drug continued to be used. Then, between 1966 and 1969, seven clear cell adenocarcinoma victims aged 14 to 24 turned up at the Massachusetts General Hospital in Boston. In April 1971 three doctors there published startling news: DES, taken during pregnancy by their mothers, was associated with the seven young patients' cancers. Slowly, information spread as further studies were undertaken, consumer groups formed, DES clinics established.

By 1982 doctors knew that the risk of cancer in DES-exposed daughters was relatively small—1.4 in 1000 to 1.4 in 10,000. But, ironically, the chance of pregnancy problems loomed large. Up to 35 percent of DES daughters would have abnormalities in their reproductive systems; DES daughters would be almost twice as likely to suffer miscarriage, stillbirth, premature delivery or ectopic pregnancy. Some researchers suspected a higher rate of infertility.

Several studies now suggest that sons may also be at risk. Findings show more benign cysts, undescended or small testes, and semen and sperm abnormalities.

And not only should DES children be concerned; mothers should know whether the drug was given to them. Some studies indicate an increased incidence of breast cancer in women who took DES.

Harriet Simand knew that DES had not been approved in Canada for use in pregnancy since 1971—although it is still sometimes prescribed as an emergency morning-after contraceptive pill and for treatment of some cancers. But what had been done to find out how many Canadians had been exposed to DES, and what had been done to help them? Harriet wrote to Monique Begin, then minister of Health and Welfare.

The response didn't satisfy her. In 11 years, Health and Welfare had written two letters to physicians telling them not to use DES in pregnancy and recommending that patients who were prescribed DES be advised of its effects. The department also issued a press release, and published a few warnings in its Rx Bulletin.

In February 1982 Harriet phoned the New York branch of DES Action, an organization providing help for Americans exposed to DES. They put her in touch with a CBC producer who was also seeking information. The result was a television appearance on "Take 30" in March 1982, when Harriet and her mother asked anyone who had been exposed to DES to write to them. Almost a hundred letters came in from across Canada. There were others. Somebody had to do something for them, Harriet decided.

Back home that summer, Harriet and her mother looked for people who might help form DES Action/Canada. Sympathetic doctors created an advisory board, and with the sponsorship of the McGill Cancer Center, the group got a government grant to help find the people who had been exposed to DES and to get medical care for them.

Women's organizations responded and DES Action groups were soon formed in Toronto, Winnipeg and Vancouver. Their first job was to line up doctors to perform a DES screening examination—a test involving inspection, palpation and iodine staining of the vagina and cervix to identify such abnormalities as irregular tissue (adenosis). Although the progression of adenosis to cancer has not been confirmed, some investigators suspect that it is in this irregular tissue that clear cell adenocarcinoma develops, anywhere from age 7 to 33, peaking at 19.

Pregnancy problems. Almost everywhere, DES Action organizers met skepticism. Doctors in the West and in the Maritimes told them the drug wasn't widely used. Only in Toronto did they quickly establish links with a number of doctors who would do the examination. Dr. Denny De Petrillo, director of gynecological oncology at the University of Toronto, estimated that about 200,000 Canadian children had been exposed to DES since 1941.

Now DES Action was ready to seek out the DES-exposed. As Harriet traveled from city to city giving interviews, every new branch was swamped with phone calls and letters. The response confirmed the fact that DES had indeed been prescribed across the country.

The response also revealed that the vast majority of DES daughters were struggling not with cancer—of which only some 20 cases had been identified—but with pregnancy problems. One of them was Pam Cathcart, a 35-year-old teacher in Greenwood, N.S., who had had five unsuccessful pregnancies. After seeing Harriet Simand on television, Pam called her mother in Regina to ask, "Mom, did you take any drugs when you were pregnant with me?"

"Yes, I took Stilbestrol," came the reply. Pam's heart sank. Stilbestrol was a brand of DES. She immediately wrote to DES Action in Montreal.

Harriet suggested a screening examination. Dr. S. Clair Macleod, a gynecologist in Kentville, N.S., who did the exam, told Pam she had a classical DES cervix. Because of a deformity of the cervix, women tend to have repeated miscarriages and may not carry a baby to term.

Pam was lucky, however: She had managed to give birth to two children. But studies have shown that nearly half of DES daughters' pregnancies have ended before term, and the rate may be even higher in women like Pam with abnormalities of the cervix or uterus. Eventually 80 percent of DES daughters may succeed in having a child, but at the cost of bitter heartache.

In the two years after Harriet and Shirley Simand's TV appearance, almost 10,000 people contacted DES Action. They learned what kind of care to seek, and how to retrieve their medical records—though often the file is no longer complete. Under federal law, pharmacists are required to keep prescription records for only two years.

Telling a daughter or son that she or he was exposed to DES requires courage. Edmonton psychologist Joy Muller, who leads a DES support group, says, "Relationships may get wrecked because of the child's anger or the parent's feelings of guilt."

Where should anger be directed? Marian Tobert of DES Action/Alberta, who has been trying to become pregnant for 14 years, says, "For a while I was really angry at my mother. Then I realized that was dumb, since she had wanted so desperately to have me."

Shirley Simand says she is not upset at doctors for prescribing DES because at the time they were not aware of its effects. "But I am angry that doctors have not notified their patients so they can get medical treatment."

Pam Cathcart believes the drug companies are responsible: "They pushed something onto the market that wasn't properly tested." As early as 1939, researchers had shown that DES could cause cancer and changes in the reproductive tracts of mice and rats, but drug companies apparently ignored these results. At that time, there were no federal regulations concerning the efficacy and safety of drugs. The Food and Drug Act only covered adulteration and misbranding of the product. It wasn't until 1971 that the drug companies were legally obliged to label DES unsuitable for pregnant women.

Harriet thinks the government should take some of the blame. "Its regulations weren't strict enough soon enough."

Education effort. In the United States, where all the manufacturers of DES were held collectively responsible for its effects, some victims have won suits against drug companies. There have been no court cases in Canada.

Many of the DES-exposed find support and satisfaction in working for DES Action. DES Action/Vancouver runs workshops all over British Columbia, teaching women how to establish self-help groups. DES Action groups in Toronto, Montreal and Edmonton hold open monthly meetings where the DES-exposed share information and feelings. Pam Cathcart, who organized DES Action in Nova Scotia, says, "If I can help just one person to understand and feel relieved about the whole situation, all my work will have been worth it."

DES Action is also continuing its efforts to educate the medical community. As Dr. De Petrillo puts it, "DES is one of those cases where the patients often know more about its effects than the doctors." He has established the DES Registry and Information Center in Toronto to advise physicians on DES screening and counseling, and to gather more precise data about the risk of DES-related cancer in Canada.

How can you tell whether you may have been affected by DES? Ask your mother if she had a history of difficult pregnancies or miscarriages and if she took any drugs. If you suspect you are a DES daughter, have any unusual vaginal discharge or abnormal bleeding, or are having pregnancy problems, DES Action has these recommendations:

Have your mother contact the physician that she saw during her pregnancy.
Seek help immediately from a doctor who knows about DES, or contact DES Action.
Have regular checkups by a DES specialist.
Try to avoid all further use of DES and other estrogens.

If you think you are a DES son, see a urologist for an examination, or call DES Action for a referral. Check the testes regularly and report any suspicious lumps to your urologist promptly.

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