DES Daughters Sue Eli Lilly

Patricia Royall and her mother, the late Virginia Inness-Brown Conn

When Patricia Royall was 28-years-old she was rushed to the emergency room with massive bleeding. The diagnosis: cervical cancer. “The doctor who treated me asked if I was a DES daughter and I told him I didn’t know,” says Patricia. “He told me I had some reproductive abnormalities that he had seen in other DES daughters, and explained that if my mother had taken DES while she was pregnant with me, I would need to make sure all of my future doctors and health care providers knew that I had been exposed to DES.”

DES, or diethylstilbestrol, is a synthetic estrogen that was prescribed to millions of pregnant women between 1940 and 1971 to prevent miscarriages and premature labor, and other complications. In the 1950s it was proven ineffective and usage declined.

It wasn’t until 1971 that the Food and Drug Administration warned physicians to stop prescribing DES to pregnant women after research uncovered an increased risk of a particular type of cervical and vaginal cancer.

It turns out Patricia’s mother had taken DES. “I’m one of five children,” explains Patricia. “My mother had a miscarriage before she became pregnant with me. As soon as she became pregnant with me, she was immediately put on DES for the full term of her pregnancy.”

Her mother did not take DES with her other four children and none except Patricia have had cancer of any type.

According to the National Cancer Institute, “DES is now known to be an endocrine-disrupting chemical, one of a number of substances that interfere with the endocrine system to cause cancer, birth defects, and other developmental abnormalities.”

Over the years, Patricia has endured a series of health issues beyond cervical cancer, including endometriosis, uterine fibroids and a miscarriage. “My only son Nathaniel was born premature,” she recounts. “I was put on bed rest for eight weeks before he was due. I had what is called an incompetent cervix, which is another side effect of DES exposure. It can’t hold the weight of the baby, so it has to be tied like a drawstring bag and cut just prior to delivery.”

About four years ago, at the age of 54, Patricia was diagnosed with breast cancer, and if that weren’t enough, since then a precancerous growth was found in her colon and she developed an autoimmune disease. Her mother was also diagnosed in her late 50s with cancer in both breasts. Some studies have suggested that after age 40, DES daughters have approximately twice the risk of breast cancer as women of the same age who weren’t exposed.

Patricia is now one of more than 60 women who are suing 14 major drug companies, including Eli Lilly and Co, which once dominated the DES market. “Last year a federal judge determined that the drug companies were negligent in warning physicians and their patients about the health risks associated with DES exposure and ordered mediation,” she explains. “The mediation failed, so now a bellwether trial (juried trial) has been scheduled.”

A bellwether trial is used when a large number of plaintiffs have filed suit based on the same claim. A group is chosen to represent all of the plaintiffs. Their cases go to trial and the results act as a bellwether, or indicator of future trends, for the remaining cases. Patricia is part of a Mass Tort Litigation labeled Fecho Sisters vs. Eli Lilly, but is also listed on the court docket as Royall vs. Eli Lilly.

Since the 1970s, thousands of lawsuits have been filed as a result of the alleged link between DES and cervical and vaginal cancer, as well as fertility problems. Many of the cases were settled out of court. The case that Patricia is involved in is supposed to be the first major suit that alleges a link between DES and breast cancer in DES daughters over the age of 40. Opening statements will take place on Monday, January 7th in federal court in Boston. Patricia will be in the courtroom, although doesn’t know yet if she’ll be called to testify.

No matter what the outcome, Patricia’s biggest concern is spreading the word about DES. “The sad part,” she says, “is millions of women and their baby boomer sons and daughters were exposed to DES and have absolutely no clue. I believe getting the word out about DES is important. If someone finds out they have been exposed they can begin to take the necessary health precautions.”

Diane Atwood

About Diane Atwood

For more than 20 years, Diane was the health reporter on WCSH 6. Before that, a radiation therapist at Maine Medical Center and after, Manager of Marketing/PR at Mercy Hospital. She now hosts and produces the Catching Health podcast and writes the award-winning blog Catching Health with Diane Atwood.