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Advocates press Congress to recognize U.S. survivors of thalidomide exposure

People born with thalidomide-related disabilities say the federal government has recognized only 17 U.S. survivors, though advocates estimate the number may be about 100. Their group is seeking formal recognition and $150,000 for each survivor.

Advocates press Congress to recognize U.S. survivors of thalidomide exposure
Decades after U.S. doctors gave pregnant patients thalidomide without telling them, survivors and their advocates are asking Congress to formally recognize those affected and provide financial support. Gwen Riechmann, who was born with phocomelia, a limb-shortening condition associated with thalidomide, said patients still encounter doctors who believe the drug’s harms did not reach the United States. “Oh yeah, it did,” she said. Riechmann’s mother was given the sedative in the early 1960s to treat pregnancy-related nausea, without being told what it was. The Food and Drug Administration never approved thalidomide for general use in the U.S. But Cincinnati pharmaceutical company William S. Merrell distributed thousands of doses to doctors while seeking approval for the German-made drug. Doctors gave it to patients for conditions including insomnia and morning sickness, and the company did not require them to track doses or report side effects, according to Jennifer Vanderbes, author of a book on thalidomide’s history. FDA reviewer Frances Oldham Kelsey blocked the application, helping avert the far larger catastrophe seen in countries where the drug was widely sold. But the agency’s records could not account for much of the distributed supply. Doctors often did not tell patients they had taken thalidomide or document it in medical files, leaving many families without records linking the drug to their children’s disabilities. The FDA has formally acknowledged 17 U.S. survivors. Retired agency historian John Swann said the actual number is difficult to establish but is higher; Vanderbes estimates there may be about 100. Riechmann co-founded USA Thalidomide Survivors in 2018. The group, which has about 100 members including allies, is urging Congress to recognize survivors and provide $150,000 to each, with the possibility of additional support later. Survivors are aging and facing declining health, Riechmann said. The campaign raises questions about the government’s responsibility to people harmed after an inadequately tracked drug reached patients—even as Kelsey’s refusal to approve it became a defining moment in the development of stronger drug-testing rules.

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