Invisible victims
The unseen survivors of thalidomide seek recognition decades after infamous scandal that led to reform
The man on the bus was staring at her. Carolyn Farmer, 17, noticed him as she closed the Leon Uris novel “Exodus” and gathered her things. It was 1979, and she knew what it was like to have strangers gawk at her: She had been born with shortened arms and fingers missing on each hand.
“Are you a thalidomide baby?” he asked as she waited to get off. Confused, she said no.
But on the walk home in her close-knit suburb of St. Paul, Minnesota, she repeated this word she had never heard before: tha-lid-o-mide.
Thalidomide, a sedative sold by a German drugmaker, was said to relieve everything from anxiety to morning sickness, but it led to perhaps the greatest pharmaceutical scandal ever. About 10,000 babies, many in Germany, Britain and Australia, were born with severe defects in the 1950s and 1960s after their mothers took it. Some babies had no arms or legs. Others had no ears or malformed kidneys.
The scandal briefly flared in the United States, where the drug was given to about 20,000 Americans in loosely run clinical trials sponsored by two American drugmakers. The crisis led to passage of modern drug safety laws in the United States that required pharmaceutical companies to prove their medicines worked through rigorous clinical trials.
But the babies whose mothers took thalidomide in the United States were largely forgotten. Today, more than half a century later, people who believe they are the U.S. survivors of thalidomide have found one another through Google searches and Facebook groups, joining forces to fight for justice, recognition and compensation.
Historians say the lesson of thalidomide is one that society is still learning the hard way. Hundreds of thousands of Americans have died in an opioid epidemic that has its roots in the Food and Drug Administration’s approval of the painkiller OxyContin and dishonest, aggressive marketing of the drug by its maker, Purdue Pharma.
Today, as the coronavirus circles the globe — claiming thousands of lives — there is a renewed push to rush potential cures to market, even if it means bypassing the checks and balances that were thalidomide’s legacy.
Jennifer Vanderbes, who is researching a book about the history of thalidomide in the United States, said society owed the survivors in America a debt of gratitude.
“They took a pharmaceutical bullet for all of us, not choosing to,” she said. “But without them, we don’t have the safeguards that we have today.”
Pills safer than Alka-Seltzer: posed her for a portrait, a teddy bear obscuring her weaker, shorter left arm. It was one of many props he used to hide her birth defects as she grew up: cuddling a bear, seated behind her baby sister, in profile against a tree.
Her disability was like that — seen, yet unseen — for much of her childhood.
Her mother, Marilyn, was 22 when she gave birth in March 1962. The nurses did not tell her about her newborn’s defects right away. They presented the baby in a tight swaddle, her too-short limbs tucked under a blanket.
Her mother, whose last name is now Martin, had heard about thalidomide but said she didn’t connect it to Carolyn’s defects.
Her doctor had given her a packet of pills early in her pregnancy that were for headaches, not morning sickness. Besides, the doctor had assured her they were safer than Alka-Seltzer, and she had taken only one or two, she said.
Carolyn’s arms were shorter, and she was missing fingers, but “it wasn’t the horrific deformities that they were telling about or showing,” Martin recalled.
Nevertheless, she set the pills aside, just in case.
Carolyn, the eldest of four children, was expected to do the same chores as everyone else, washing dishes after dinner and changing her sheets every Friday.
But she couldn’t hold hands on Sundays at church or when her third-grade class learned to square dance. She remembers visits to doctors, including to a surgeon who fashioned a working thumb out of one of her index fingers. She endured taunts at school.
Her siblings had to answer prying questions. “My mom would say, ‘Well, tell your friends that’s how God made her,’ ” Patty Westcott, Carolyn’s younger sister, recalled.
By the time the man on the bus asked about thalidomide, Carolyn’s parents were divorcing. Her mother said she wasn’t sure what the cause was, but ended the conversation. It wasn’t the right time to ask questions no one felt like answering.
When Carolyn was old enough to get a job, no one wanted to hire her. She was turned down at a fast-food chain because she couldn’t hold the fry basket. At a department store lunch counter, she was told she wouldn’t be able to balance large trays of food. She was fired from a gas station after being wrongly accused of making errors at the cash register.
Carolyn married at age 19 and quickly had two girls. Angered by her poor job prospects, she consulted a lawyer to look into the thalidomide story.
This time, she pinned her mother down, and to her surprise, her mother handed over the old pills. Her lawyer sent them to a lab, but the tests could not determine whether they were thalidomide, and they were not returned.
Carolyn divorced, becoming a single mother.
As she got older, she learned to slip her arms into her sleeves at job interviews, revealing her disability only after she was hired. A career in public relations followed, and she dabbled in local Democratic politics.
In 2008, as she prepared for her daughter Angie’s summer wedding, Carolyn agonized over what to wear. A long-sleeved jacket would be too hot, yet she cringed when she imagined the photograph hanging on her wall, her arms exposed every time she walked by. She bought a sleeveless dress anyway.
Similarly emboldened, in 2011, Carolyn typed the words “thalidomide victim” into Google. Decades of burying her feelings had caught up with her, and she was struggling with depression and anxiety. She needed to understand what had happened.
Her Google search led her to a Facebook group for international survivors of thalidomide, and she learned there that a lawsuit was being prepared on behalf of American victims.
That fall, she reached out to the lawyers bringing the suit, and one of them returned her call at work. She walked to the parking lot to talk.
The lawyer told her about the American clinical trials and said the drugs had been dispensed in paper packages, without labels.
“I was just pacing around the parking lot, like, ‘Oh my gosh, I can’t believe it,’ ” Carolyn said. “My whole life kind of flipped upside down.”
A marketing campaign disguised as a clinical trial: In 1957, thalidomide arrived in German pharmacies as a sedative sold by Chemie Grünenthal, whose head of research, Dr. Heinrich Mückter, was a Nazi war criminal.
The drug, approved in Germany without testing in pregnant women, was sold as a safe alternative to overdose-prone sedatives. Soon, Grünenthal and its overseas partners were selling thalidomide for a range of ailments, including morning sickness in pregnant women.
Two American companies explored bringing thalidomide to the United States. In 1956 and 1957, Philadelphia drugmaker Smith, Kline & French distributed it to dozens of doctors through a clinical trial. Doctors were not initially told it was thalidomide; the pills instead carried the label SK&F #5627, according to federal court documents. The company’s researchers concluded it was not effective and decided not to pursue an application for approval.
But Richardson-Merrell, a Cincinnati company that was selling thalidomide in Canada under the name Kevadon, began a more aggressive, sloppily run trial to prepare for what the company assumed would be an easy approval in the United States.
One part of the campaign, run by its marketing department, instructed salesmen to assure doctors they didn’t have to keep track of which patients took it. “Do not sacrifice having an important man evaluate Kevadon for the sake of case histories,” according to a handbook later turned over to Congress for Senate hearings that took place in 1962.
Internal FDA reports, obtained through a recent public records request, show just how chaotic the distribution of thalidomide had been.
The tablets came in a variety of shapes and colors, from yellow to pink to white.
In one case, a boy with birth defects was born to a Maryland woman who had been given the drug by her mother, whose psychiatrist issued it “to allay her nervousness,” according to an FDA memo from August 1962.
A Chicago-area doctor told investigators that a colleague had given him 400 pills, according to another memo. He heard of the drug’s problems only from later news reports.
In the United States, thalidomide was never approved for sale because a drug reviewer at the FDA, Dr. Frances Kelsey, successfully delayed an application by Richardson-Merrell over concerns that the drug could be unsafe.
In November 1961, Grünenthal announced it was pulling thalidomide from the German market because of questions about whether the drug was causing birth defects. Richardson-Merrell later withdrew its application.
Dorothy Hunt-Honsinger, of Cortland, Ohio, said her mother was given pills for anxiety and morning sickness in Pennsylvania in 1960. She believes someone must be held accountable for the trials, even if thalidomide was never approved in the United States.
“I would like compensation,” said Hunt-Honsinger, who has malformed arms and legs as well as heart problems. “More than that, I would like recognition that it did happen.”
No easy answers: As part of her quest to understand her story, Sampson asked the FDA for the list of American doctors who distributed thalidomide. Soon she was turning through the roughly 1,200 doctors who worked with Richardson-Merrell, and nearly 70 who received the drug through Smith, Kline & French.
She was searching for her mother’s obstetrician. Discovering whether he had been part of the trial might offer her one more clue to her story. The names beginning with H, the first letter of his name, ran for four pages. But he was not there.
Another dead end. Today, Sampson receives federal disability assistance as a result of chronic back, neck and arm pain that she says results from her defects. She works part time designing websites for businesses and nonprofits around Minneapolis, and volunteers as the communications director of the nonprofit she helped to found.
She said she had struggled to make peace with the idea that she would never know for sure whether she is a thalidomide survivor.
That ambiguity is built into the story of thalidomide in the United States.
Richardson-Merrell’s slapdash clinical trial and the flawed investigation by the FDA most likely mean the drug’s true toll will never be known.
“I can’t tell you how angry that makes me,” Sampson said.