C. Jean Grover, a Rochester woman born with a disability caused by the drug thalidomide, was featured in the July 31, 2023, issue of People Magazine, in an article called “My Life as a Thalidomide Survivor.” (https://people.com/thalidomide-survivor-wants-justice-exclusive-7562450)
Jean is the Director of Marketing and Communications for Rochester’s Villa of Hope, but also serves as volunteer Director of Communications for US Thalidomide Survivors (http://usthalidomide.org). Her work with the latter group has been dedicated to raising awareness that over 100 Americans were born with birth defects caused by the drug thalidomide, given to pregnant women in the US by over 2,500 doctors in the late 1950s and early 1960s.
Raising awareness, but also now, as the group heads to Washington DC to meet with members of Congress, seeking assistance as well.
“The wide distribution of thalidomide in the United States was a well-kept secret. In fact, it was – and is – a scandal,” says Jean. She first learned the truth about the number of pills that were in circulation in the US – 5 million in the late 1950s and early 1960s – from the recently released book, WONDER DRUG: the Secret History of Thalidomide in America and Its Hidden Victims, by Jennifer Vanderbes, also reviewed in People Magazine. “We are in our 50s and 60s now, and we have finally found out the truth,” Jean says, who describes her life as “still being re-written.”
According to author Vanderbes, the drug was being distributed in the U.S. under the guise of clinical trials. Although the FDA learned about the birth defects in 1961, Vanderbes’s research shows that the agency didn’t move to recall the drug until the summer of 1962.
In subsequent moves, the system let down the thalidomide babies who were born here. The FDA maintained only 17 babies were born in this country (where the drug was never approved by the FDA), and failed to track down which doctors gave the drug to which patients; pregnant women were not told what they were given, and once their babies were born, were not told after the fact what had happened. And then, the system declined to pursue prosecution of the drug companies which had distributed the drug as part of an aggressive marketing effort at the time.
To date, the United States is the only developed nation that does not assist its thalidomide survivors; according to Vanderbes, “Canada, Britain, Spain, Ireland, Germany, Sweden, Denmark, Australia, New Zealand, Japan, Italy . . . every country where the drug was distributed has subsidized survivors’ care costs.”
Jean advocates alongside fellow survivors, many of whom live at the poverty level today, unable to afford home care and extraordinary medical needs, caused by their thalidomide injuries. The week of September 18, US Thalidomide Survivors head to Washington DC where they have scheduled meetings with the offices of Senators Sanders, Casey, Merkley, Wicker, Warren, Duckworth, and Markey.
Jean has produced and directed two educational documentaries she hopes will help members of Congress understand the depth of this issue in the US. Both can be found on YouTube at the following links: https://www.youtube.com/channel/UCWtbZ0Nwa5xSi7pL9AB1J0w and https://youtube.comwatch?v=dO_LrVZ9wS0.
“The contributions we have made to medical science with our bodies and our lives, have been significant,” Jean says. “And most American survivors of this drug have never received any sort of assistance. We are hoping to change that.”
Provided information and photo
