The U.S. Has Thalidomide Survivors. It's Only Acknowledged 17 of Them.

The Drug That Wasn't Supposed to Happen Here

Here is the official American story: A heroic FDA pharmacologist named Dr. Frances Oldham Kelsey blocked thalidomide from hitting U.S. shelves in 1960 and 1961. President Kennedy praised her publicly for sparing the country from the catastrophic birth defects ravaging families in Germany and Britain. America got lucky. Crisis averted.

Except, as NPR reports, that story has a significant hole in it. Thalidomide was already inside the United States. The Cincinnati-based pharmaceutical company William S. Merrell had handed out thousands of unlabeled doses to American doctors before Kelsey ever stopped the formal approval. Those doctors gave it to their patients, including pregnant women, to treat everything from insomnia to morning sickness — without telling the women what they were taking.

According to Jennifer Vanderbes, whose book Wonder Drug covers this history in full, Merrell didn't require doctors to track who got the drug or report back on side effects. No labels. No paper trail. No consent. What many of those women did have, nine months later, were children born with severely shortened limbs, a condition called phocomelia that is thalidomide's calling card.

The Cover-Up That Lasted Generations

John Swann, a retired FDA senior historian, told NPR that when the agency traced Merrell's records, the amount of thalidomide that simply couldn't be accounted for was alarming. The company itself admitted that enormous quantities were unaccounted for. That's not a rounding error. That's a pharmaceutical company losing track of a drug that was, at that very moment, deforming babies.

And then it got worse. Even after the babies were born with truncated limbs, even after the scientific community understood what thalidomide did, the doctors stayed quiet. Vanderbes told NPR that some women were specifically told they had not taken thalidomide. Their children grew up being told the same thing. They couldn't possibly be survivors, doctors said, because everyone knew the United States had dodged the thalidomide disaster.

This is one of the quieter outrages in American medical history: not just that a pharmaceutical company ran a sloppy, undocumented clinical trial on unsuspecting pregnant women, but that the medical establishment then closed ranks and denied it happened. For sixty years. To the faces of the people it happened to.

Seventeen. The Government Says Seventeen.

The FDA formally acknowledges 17 American thalidomide survivors. Seventeen. Vanderbes estimates the real number is closer to a hundred. Swann, who spent his career at the FDA, told NPR it was certainly more than 17, but the documentation is so deliberately incomplete that pinning down an exact figure is nearly impossible. That incompleteness is not an accident of history. It is the direct result of doctors who didn't document, a company that didn't track, and a government that found it more comfortable to celebrate Kelsey's heroism than to account for the damage done in the meantime.

Gwen Riechmann was born with phocomelia in the early 1960s after her mother was given a new sedative to help with pregnancy nausea. Her mother had no idea she was part of an unregulated clinical trial. Riechmann told NPR that she encounters doctors today who flatly tell her thalidomide didn't happen in the United States. "Oh yeah, it did," she said.

What They're Actually Asking For

In 2018, Riechmann co-founded USA Thalidomide Survivors, an advocacy group of roughly 100 people, including allies and survivors. They are pushing Congress to pass a bill that would do two things: officially acknowledge that American thalidomide survivors exist, and pay each survivor $150,000, with the possibility of additional compensation down the road.

Riechmann told NPR that the United States is the only country that has provided no support and no recognition whatsoever. Germany, Britain, and other affected countries have long since acknowledged their survivors and provided compensation. The U.S. has offered a press conference in 1962 and sixty years of institutional silence.

The survivors are aging. Their health is getting worse, which is predictable when you consider that the congenital limb differences caused by thalidomide don't get easier to live with as a body gets older. Riechmann is clear-eyed about the urgency. They can't wait much longer, she said, but they can't give up either. That is a brutal position for the government to have put them in.