Pursuing an Untold Story of Thalidomide

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Like many journalists, I spend a lot of time writing breaking news, bringing readers the latest about what is happening now.

But sometimes, getting to the bottom of a story can take weeks, months, even years. And sometimes, the most surprising stories can emerge from the past. That is what happened in March 2017, when a woman named Maria Seyrig contacted me on LinkedIn.

She said she was an American survivor of thalidomide, the drug that, in the 1950s and early 1960s, was tied to severe birth defects in about 10,000 babies overseas. As someone who covers the drug industry, I thought I knew the whole story of one of history’s biggest pharmaceutical scandals. The crisis, I thought, had happened elsewhere. Thalidomide was not approved in the United States back then, though it led to sweeping changes in how drugs are reviewed today.

Ms. Seyrig wanted to set the record straight about what happened in the United States. There were American survivors “who were affected despite that effort,” she wrote to me. If she turned out to be right, I wanted to tell their stories.

I quickly learned that two American companies had operated clinical trials of thalidomide in the United States. The reports said that only a handful of American babies were affected. But Ms. Seyrig said a new group of survivors believed the numbers could be larger. They were seeking recognition and justice.

I was intrigued by the story, but I also had deadlines to meet. As I juggled other assignments, Ms. Seyrig connected me with others who believed their disabilities were due to thalidomide. I started digging for records. I found some in the files of lawsuits that people who believed they were survivors had filed against the companies that brought the trials. I requested documents from the Food and Drug Administration, which sent me more than 1,000 pages.

So much of my reporting lately happens on a screen, but for this project, I needed paper. I spread the documents over the carpet of my home office, placing them in chronological order. During the spring of 2018, I read the documents each night after I put my kids to bed.

Reading the files was like traveling back in time. I read the warning that President John F. Kennedy gave to women to check their medicine cabinets for the drug, the “rush” assignment that went to F.D.A. field agents. The memos were often dry, but at times I could discern the frustration of investigators when doctors refused to talk, or when potentially incriminating company memos went missing. There was a description of a mother hesitantly sharing photos of her deceased infant, and another report of a woman who had given birth to two babies injured by thalidomide.

I was surprised at how many parallels I saw to today. The company that ran the main trial in the United States, Richardson-Merrell, sought influential doctors (known today as “key opinion leaders”) who would hand out thalidomide and tell their peers to do the same. It distributed samples through “detail men” who left brochures extolling the product’s benefits.

After reading the documents, I had a clearer picture of how the clinical trials were run, and how the F.D.A. had investigated what happened. But as the weeks and months passed — and as I sometimes paused my research to report on other assignments — I kept thinking about what else I needed to complete this story.

When I began my research, I wanted to definitively answer the question of whether the people I interviewed were affected by their mothers’ taking thalidomide. But the more I dug into records and conducted additional interviews, I learned that the very nature of what happened made that task difficult. Richardson-Merrell’s trial was so haphazardly run that in many cases there would have been no record. Many mothers — and most likely their doctors — lived for decades with guilt. In the 1950s and ’60s, disabilities were frequently seen as a source of shame and few questions were asked or answered.

In the end, after speaking with the Americans who see themselves as thalidomide survivors, I learned that they viewed that uncertainty as yet another injustice. But at least now, they are telling their stories, and readers can learn about an overlooked chapter in American history.

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