The narrative about thalidomide is that it never unleashed its horrors in the U.S.
The drug caused thousands of children to be born with malformed or missing limbs worldwide, but a medical reviewer at the U.S. Food and Drug Administration named Dr. Frances Oldham Kelsey stopped it in its tracks and fundamentally changed the agency's testing and approval process, leading to the robust regulations we have today.
Kelsey was publicly praised by President John F. Kennedy for sparing “us this terrible human tragedy which has been visited on families in Germany."
Except that’s not entirely correct.
From 1959 to 1962, a pharmaceutical company in Ohio distributed thalidomide without approval from the FDA. Some children whose mothers were given the drug during pregnancy were born with severely deformed limbs.
Now those survivors want the federal government to formally acknowledge their existence.
“We go to doctors today who say it didn't happen here in the United States. Oh yeah, it did,” said Gwen Riechmann, who was born with phocomelia, the signature shortened limb deformity caused by thalidomide.
Left in the dark
Reichmann still lives in the Cincinnati home where she grew up. When her mother was pregnant with her in the early 1960s, the doctor gave her a new sedative meant to treat maladies like insomnia or nausea.
She was unwittingly part of a supposed clinical trial for the German drug thalidomide, distributed in the U.S. by the Cincinnati-based company, William S. Merrell.
Jennifer Vanderbes, author of “Wonder Drug: The Secret History of Thalidomide in America and its Hidden Victims,” says 5 million doses were handed out in the U.S. Some women were simply told the drug was a supplement or a vitamin.
Doctors “were basically told that the drug had already been tested, was very safe, and that they didn't need to observe patients carefully or to document any specific data about patient outcome,” she says.
The result: thalidomide was distributed across the U.S. “at a scale as though the drug were on the market,” Vanderbes said.
The women who were given thalidomide in the United States “had no slips of paper that showed their prescription. They had no bottles with a label,” she said. There was no paper trail; no proof.
What they did have were children born with truncated limbs.
“They were not told after the fact when the doctors observed these injuries in their babies” that they’d been given thalidomide, Vanderbes said. “The dots were not connected for the women patients, and certainly not for the children.”
Once the truth about thalidomide came out, Vanderbes said mothers still weren't told they'd been given the drug, or were specifically told they hadn't.
Years later, many survivors, too, were told they couldn’t be thalidomide survivors because their doctors believed the U.S. had escaped the thalidomide scandal.
It's hard to know how many survivors there are, but the estimate is around a hundred still living.
The fight for recognition and support
In 2018, Gwen Riechmann helped found USA Thalidomide Survivors.
“The U.S. is the only country that has not provided any kind of support or even recognition that they have thalidomide survivors,” she said. “We are looking for, first, recognition that, yes, we do exist. And then, secondly, support.”
The group worked with U.S. Rep. Jefferson VanDrew (R-NJ) on Thalidomide Survivors Compensation Act of 2025 (H.R. 5865). It would officially recognize thalidomide use in the U.S. and provide a one-time payment of $150,000 to each survivor – with the possibility of additional money in the future.
“We need co-sponsors immediately,” said Laura Kendall, director of government affairs with USA Thalidomide.
“Our health is declining. Our joints and everything that we use – that we're not supposed to use – to survive and to function, is causing problems … and everything is deteriorating quickly.”
The remaining survivors are also aging, and as Riechmann points out, “there is no research on what the lifespan of a thalidomide survivor is because we're proving that research now.”
The group's annual conference is set to take place Sept. 20-25, 2026, in Washington D.C., where they'll be trying to drum up support. Kendall estimates they need at least 150 bill co-sponsors by the end of the year, or else they'll have to start over with the next Congress.
It's a massive lift; Gwen Riechmann notes they need more co-sponsors than they have members.
“I can't contact [a legislator] from up in Cleveland or Toledo and say, ‘Can I get a meeting with you,’ because I'm not a constituent,” she said. “But if there's a supporter up there, we can work with you, and if you can help us set up the meeting, that's great.”
The group also provides template letters people can use if they’d like to contact their legislators.
Riechmann said thalidomide survivors exist, and she wants the government – and everyone — to finally recognize that fact.