While researching her book about the history of thalidomide in the U.S., Jennifer Vanderbes discovered that there were far more people harmed by the drug in the U.S. than originally thought—at least 10 times more. These individuals were born with shortened limbs and other serious medical conditions after their parents took thalidomide during pregnancy in so-called clinical trials in the late 1950s and early 1960s.
Wonder Drug tells the story of Vanderbes’s trek across the U.S. in search of thalidomide survivors. It also revisits the role of the U.S. Food and Drug Administration medical reviewer Frances Oldham Kelsey—the subject of our recent five-part season—who refused to approve thalidomide for sale in the U.S. In the process of writing her book, Vanderbes became an advocate for the survivors, now in their 60s, and their search for justice and support.
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TRANSCRIPT
Jennifer Vanderbess: When I came to this story, if anyone ever did an article about thalidomide, they wrote about Francis Kelsey, and they never even tried to pick up a phone and talk to a survivor.
Katie Hafner: I’m Katie Hafner, and this is Lost Women of Science Conversations, where we talk to authors and artists and poets and filmmakers about the work they’ve done to uncover and celebrate overlooked women in STEM.
Over the past five weeks, we’ve been delving into the story of Dr. Frances Kelsey, a medical reviewer at the U. S. Food and Drug Administration.
In the early 1960s, she prevented thousands of babies from being born with shortened limbs, hearing loss, weakened organs, and other horrible injuries they sustained in the womb.
If you’ve listened to the whole season, you’ll know that it was Frances Kelsey who stood her ground and would not approve thalidomide, the drug that caused all of these injuries.
But you’ll also have heard that thalidomide was actually available in the United States. More than 1,200 American doctors across the country were sent pills by the company that wanted to manufacture and distribute the drug. They were part of a network of medical professionals asked to carry out clinical trials, such as they were, with little oversight or guidance.
So today, we’ve decided to put out an episode that zeros in on that quiet spread of thousands of thalidomide pills across the U. S. and the subsequent search for survivors. And to do this, I’m delighted to welcome a familiar voice to those who’ve been tuning into the season, Jennifer Vanderbess.
Jennifer is the author of the book “Wonder Drug: The Hidden Victims of America’s Secret Thalidomide Scandal.” The book was published in 2023 and the paperback is out just now. In the book, Jennifer uncovered what happened to those pills and the people who took them here in the U.S.
Jennifer, welcome to Lost Women of Science.
Jennifer Vanderbess: Hi, Katie. It’s great to be here.
Katie Hafner: So I have to say, first of all when you embark on a nonfiction book, it’s, you know, it becomes like this magnificent obsession, right?
Jennifer Vanderbess: Correct. And that’s your decision is, you know, this is this thing I’m going to be working on forever and ever. So I wanted to ask you, when you decided to write the book, you knew there were books about thalidomide.
It had been covered a lot so you knew you had a lot of material to work with. At the same time I wanted to ask you, how did you want your story to differ from those that already existed? And also, I do have to say, I mean, what an incredible bummer of a subject. So, so can you answer kind of both those questions?
Why decide to immerse yourself in such a depressing topic?
Jennifer Vanderbess: It’s a great question. I mean, at the time, my entry point into this story were the heroes, Francis, Kelsey, the primary one in this story, who had sort of been in these glamourless bureaucratic posts doing their day to day work and rose to the occasion to prevent this horrible tragedy from happening in the United States.
So, there was a depressing component to the story, but I thought what I was narrating was the heroism of average people, you know, who heed the call. So I was really inspired by the story when I went into it. And I didn’t quite know the scope of it, as you mentioned. Thalidomide and the thalidomide scandal, which actually happened worldwide, was not an unknown news item, right?
I’d heard about Francis Kelsey. What struck me first actually was that most of what had been written about her in the past, let’s say 10 years before I started work on the book, was pretty much exactly the same as what had been written about her in the 1960s.
No one had really circled back to her. No one had done any additional digging. And that was pretty much true of all the books that I’d read on the subject. And there weren’t tons of them. There were a limited number.
Katie Hafner: Are you saying that her story was accepted at face value or are you saying that no one had advanced the story beyond that period of time in history or a little bit of both?
Jennifer Vanderbess: There was a little bit of both. There was a little bit of case closed. The story that had been delivered was a great one. She was a hero. The United States was spared the effects of this horrible, you know, drug that had affected babies worldwide. You know, JFK gives her an award on the White House lawn.
It’s a fabulous story. The FDA uses it to recruit new medical reviewers. Wonderful, wonderful. When I came to it, I started doing my initial research, and I was reading, you know, what we call secondary sources. I was reading books. I was reading, you know, articles. What struck me is that they were all referencing pretty much secondhand sources from the 1960s.
No one had gone and looked at any FDA records. No one had really done any kind of digging into the story beyond what had been announced, you know, in 1962 is the end of the story. And I happen to be aware at the time that her papers had landed at the Library of Congress. And that some other papers and documents relating to people peripherally connected to the story were available.
There was a lot more that subsequently was revealed, there were the FDA recommended criminal charges be pressed against the pharmaceutical company; those further developments and further revelations really went unreported on. Across the board.
Katie Hafner: And you knew that as you were going into the book.
Jennifer Vanderbess: Yeah, well, you know, it’s not like writing about World War II where there are hundreds and hundreds of books and memoirs and letters and you can never wrap your arms around it, right? There are, you know, a limited number of books that were written on the subject.
A limited number of long articles. I was able to read everything. I was able to sort of dive in and say, okay, what’s been touched, and what hasn’t been touched, and I would also add that one of the things I felt I could bring to the story or specific interest that I had, and it relates to the, you know, the overarching title of your whole series, The Lost Women of Science, I was very interested, not just in Frances Kelsey, but in some women that had been noted very peripherally in the story of, as having contributions.
And I, as a woman, writer, mother, very much saw the story of thalidomide as a story about the concerns of women being sidelined by the medical establishment. I think it’s the first big sort of splashy version of that kind of tragic tale. You know, women’s health not being properly addressed by pharmaceuticals.
And so I was very interested in the fact that certainly on the American side of the story, the key players in fighting thalidomide were women and women doctors. And I wanted to get more information about those other players, Barbara Moulton and Helen Taussig and I cold called a niece of Barbara Moulton and got her on the phone, and no one had ever asked her questions, and just for reference, Barbara Moulton had basically had Frances’s job at the FDA before she got there, and she becomes you know, a great friend and ally, but no one had ever interviewed her relatives.
So what I also felt, in addition to sort of trying to do a deeper dive into research, was an interest in really bringing to light the stories of these various women who had been so essential in keeping the drug off the market.
Katie Hafner: So you had this epiphanous moment when you wrote to your editor and you realized what?
Jennifer Vanderbess: Yeah, so I had proposed this book using the information that was widely circulating for decades, which is that there were about 17 American babies harmed by the drug thalidomide, and about half of those were supposed to be due to exposure from overseas thalidomide. So it’s supposed to be a very small number, and by all accounts, most of those individuals had not lived into adulthood.
Katie Hafner: Right, so when you say from overseas that somebody would go overseas, find the drug. In fact, we start the first episode of the season with Sherry Chesson and her husband was in England and came back with Distavol, which is how thalidomide was branded and she took it, and so that you’re saying that that is what it was chalked up to is people having gotten the pill overseas.
Jennifer Vanderbess: Yeah, and for half of those FDA cases, that was accurate. So the story was that, you know, Francis Kelsey had not approved thalidomide, therefore a very, very small number of babies had been exposed to it through what was suggested to be a very small number of clinical trials. I put that in my proposal you know, for Random House. That was part of the story I thought I was telling.
Katie Hafner: That there were 17.
Jennifer Vanderbess: The 17. And I, I don’t know why except, you know, the nature of working on a nonfiction book like this that sort of always feels like it gets a little bigger and a little stranger is that I, you know, sometimes late at night I would just Google things I’d already Googled just to see if, I don’t know, something different came up, right?
And I don’t know why or what exactly I thought I was looking for, but I was Googling something related to American thalidomide survivors and I stumble upon this fundraising page for an American thalidomide survivor to go and meet other American thalidomide survivors. And I just, my jaw dropped. Like, what is this?
Who is this? This is impossible. What are the chances that this is real? So automatically, I just, the proportion just suddenly shifted. I knew something was wrong. The math was not going to add up. This didn’t make sense. And I immediately wrote to my editor and agent and I said, FYI this, this book might be about to take a turn, but I have to pursue this.
And I have to reach out to this woman, I have to start finding out what this is. And ultimately, that completely changed the course of the book. Within a short period of time, I was on planes flying across the country to meet survivors. I was in extensive touch with dozens of them, talking to some of their mothers and, you know, my, my wonderful editor, you know, understood that this was the story, and that the story, the story had changed, and this was what the book had to be, and this was the big discovery of the book.
Katie Hafner: Mm hmm. So it sounds like what you’re saying is that the, what changed was just how widespread the effect of thalidomide was in the U.S. That was your discovery, just the fact that there were far more survivors than was previously thought. Is that, just to put a, a fine point on it.
Jennifer Vanderbess: Yes, that there was, somewhere between a mistake and a big fat lie.
Katie Hafner: And so your guess, is it just a guess on the number of American thalidomide survivors there are?
Jennifer Vanderbess: I would say there were a couple hundred easily injured by the drug. There were babies that were injured and stillborn. There were babies that were injured and died a year or two into their lives. There are survivors that we know of who, you know, didn’t make it past their forties.
I would say now there probably are about a hundred living in the U.S., and it’s, it’s a challenging number to establish because we lack what their overseas counterparts lack, which is a sort of concrete proof. And the injuries can vary widely. But I think the numbers are on par with the Canadian survivors.
I think the drug was so widespread here. That you had as, you know, about as many injuries as the Canadians saw in, in a country where it was legally distributed. Yeah, I’m very involved with the American Thalidomide community and we still have people emailing, you know, every few weeks.
And it’s either, I think I might be a survivor or a very common story is we had a sibling. I know that my mother had a baby. After me, I was three. I remember something, something. They didn’t want to talk about it. Right? I mean, that’s a pretty frequent outreach. The surviving siblings of a thalidomide baby in a family that didn’t know what to make of it.
Katie Hafner: And is it true that to this day the United States remains the world’s sole developed nation that refuses to support a single thalidomide victim? Is that, is that true?
Jennifer Vanderbess: Yes. Yes. Absolutely. And they’re, they’re fighting
Katie Hafner: They being the thalidomide survivors.
Jennifer Vanderbess: Yes. Yes.
Katie Hafner: Speaking of which, there’s a, there’s a famous, very messy case Hagens Berman. Can you tell me about that?
Jennifer Vanderbess: So there’s a law firm in Seattle that has mounted a lot of very famous successful class action suits against large wrongdoers. They heard about the thalidomide story after a very successful case in Australia, in which some adult survivors who hadn’t previously been recognized were able to get compensation.
This American firm became interested and they started you know, placing ads and, and trying to find whatever American survivors they could. They gathered, I think it was about 50 or so in their first filing, and they brought it to a court. Now, we have a thing in the United States called the Statute of Limitations, which makes it incredibly hard to bring a suit decades later.
And this has been sitting, I mean, boy, I mean, well over a decade in a Philadelphia court. As a judge and some other people involved try to untangle whether or not this case can really even be heard. And whether or not the survivors can establish that there’s a reason they didn’t know until recently, that they were thalidomide survivors.
My hope in the book and I did something I never thought I would do, but I sort of insert myself as a character at the end because it became impossible to tell the story truthfully without acknowledging that my role as an author, meeting people in this community, doing research that was very pertinent to their lives, their legal cases, their story. There was simply no way to pretend that the, the writing of this book and the research wasn’t actually impacting the story.
Katie Hafner: Right. It emboldened people and, yeah, that’s a, I think that was a very smart decision on your part.
Jennifer Vanderbess: Yeah, and it was the most honest way to go about it. And they are still trying to see if there’s a universe in which this court case can be heard. What I thought could be helpful in what I discovered in the book, so when Hagens Berman brought this case to defense, these pharmaceutical companies now, you know, they’ve been gobbled up by larger firms and go by different names.
But their argument was, Hey, like, here’s an article by Morgan Mintz from 1962. See, everybody knew that thalidomide was round and about. This made it all clear. Everybody should have known in the 1960s that they might have been exposed to it. Brought these lawsuits ages ago. End of story. What I, and they submitted to the court a list. It probably was 40 or 50 articles that had appeared in the 1960s about thalidomide.
What I tried to clarify in the book is that in the real of it, you know, if you live in Mississippi and are not reading the “The Washington Post,” you know, this is not the age of Google where you have a baby with shortened arms and you just type it into your computer and it comes up like, oh, maybe this is related to thalidomide, to really establish how completely in the dark these families were and you know, to me, one of the biggest horror stories of this story is not the drug itself, it’s the complicity of the doctors along the way.
Katie Hafner: Well yes, let’s get into that. Let’s get into the complicity of the doctors along the way, because what we need to explain is how it is that those pills were distributed in the United States. So why don’t you tell me about that.
Jennifer Vanderbess: Yeah, so there was, you know, we had an FDA when thalidomide was invented, and we had a process, which was, you’re a drug firm, you want to sell a drug, okay, you need to submit to the FDA an application explaining what this drug is, how it works, and you should submit to them some human research, and we call those clinical trials, right?
And nowadays, if you’re part of a clinical trial, my guess is you’ve probably signed some extensive paperwork, you know, acknowledging that you’re in a clinical trial, understanding the terms, the risks, or whatever. Well, in, in 1959, if you were in a clinical trial, like, maybe your doctor knew, but you didn’t necessarily know.
And further, with thalidomide specifically, because the drug had been sold overseas for a few years and was so successful, the approach of Merrell, the American drug firm, when they wanted to put it on the American market, was like, this is a slam dunk. This is like aspirin. Like, it’s been circulating, it’s fine.
You know, clinical trial, shminical trial. So Merrell decides that for thalidomide, They’re going to get the sales force engaged before FDA approval. So they essentially send their entire sales force around the country to knock on doors in hospitals.
They want doctors with the most access to the most patients and they say, you know, FDA approval is like around the corner. This is the greatest drug ever. Go ahead, you know, we’ll ship you a few thousand pills. And that’s how they start.
By 1960, there’s sort of two things going on simultaneously in this story. One is that this massive stack of papers sitting on Francis Kelsey’s desk, and at the same time, there are like a few hundred salesmen hobnobbing in a hotel in Cincinnati, getting their marching orders about their new sales mission, which is to basically sweep the country, go hospital to hospital, doctor to doctor, and try to get these doctors as excited as possible about handing out thalidomide before FDA approval.
Katie Hafner: And the reason that Merrell was so hot to trot on this drug is that Merrell saw that the German company that had first developed and sold the drug, Grunenthal was making money hand over fist.
Jennifer Vanderbess: Sedatives in the 1960s were a gold mine. It was an era where people believed that every, you know, discomfort, anxiety, you know, could be solved, remedied by a pill. These were drugs that were not designed to treat an illness for a week. They were going to be taken like everyday drugs a few times a day, hopefully into perpetuity.
This was the most lucrative kind of pharmaceutical you could put on the market in 1960. And they were guns blazing, ready to go, and all they had to do was get FDA approval and get Frances Kelsey to say, okay, go. She wouldn’t do that. But they kept distributing it to doctors, under the guise of clinical trials, and it’s really important to really explain that though they called them clinical trials, When the FDA finally investigated, these were completely sloppy, undocumented, no records of patients, age, dosages, you know, it was a hot mess. And because they had been so ambitious and overzealous in representing this to doctors, the key part of what went wrong in the American story is that when they finally realized that over 1,200 doctors had officially been given the drug, they also discovered that those doctors had handed it to their friends.
So the number starts to double, triple, quadruple really quickly. And the reason why it became hard to impossible for the American survivors to ever concretely prove that they were given the drug is that their mothers were not seeing a doctor that was on that list of 1,200 official doctors. Their mothers were seeing doctors that were friends with those doctors, working in the same hospital, golf buddies. That’s how it spread so perniciously and in this completely undocumented way.
Katie Hafner: Unbelievable. That is, it’s shocking. I mean and also, you know, these women were just being told, Oh, this will help you sleep. Oh, this will help with morning sickness. Were they given the morning sickness line at that point as well?
Jennifer Vanderbess: The drug was distributed for everything from morning sickness to headaches to menstrual cramps to anxiety. A lot of doctors actually believe that morning sickness was not a real medical condition.
Katie Hafner: Excuse me?
Jennifer Vanderbess: Right, they, they just believed that it was anxiety about potentially an unwanted pregnancy, right, that was a, that was a medical theory in circulation amongst male doctors.
So the reason that it made sense to them to give an anti-anxiety pill was that they thought that that’s what was actually at the root of what was causing a woman to feel nauseated. So they were handing it out for everything.
Katie Hafner: More after the break.
Katie Hafner: All right, so there’s Kelsey. Let’s circle back to her for, for a minute. She’s, she doesn’t know any of this. All she really knows is that she’s unhappy with the application. She sees holes in it. It’s quote incomplete, incomplete, incomplete, and she keeps throwing it back at them. And the Merrell people are, especially this one guy, Joseph Murray. He’s like going out of his mind because he’s promised his bosses that this thing was going to get rubber stamped.
Okay. So, it all comes out, just very quickly to make a very long story shorter, the Germans withdraw it. After a lot of pressure, after having denied it for a long time in November of 1961.
But can I tell you, Jennifer, that what I, through this entire season, what galls me more than anything, and I know what you mean about how we aren’t in the age of Google, but the time lapse between when, for instance, the Germans withdraw the drug from the market in Germany and others withdraw it in other places. Word doesn’t get out in the United States. My main kind of rant in the season is why was there this delay?
Jennifer Vanderbess: It’s interesting, I mean, of the many irresponsible things done along the way, the sort of concrete facts that the inventor and licensor of the drug in Germany removes it completely from the market because of documented concerns that it’s causing birth defects and Merrell, the U.S. does not withdraw their application from the FDA.
Katie Hafner: But they knew it. They obviously they knew it.
Jennifer Vanderbess: And I’ll circle back to this amazing sales force that they have. Let’s just say you find out that a drug you’ve sent around the country is wreaking havoc. You don’t need to mail letters. You’ve got all these guys in their suits with their briefcases who can drive up and tell doctors right away, stop giving it out.
And they don’t do that. The detail men were never even told that the drug was no longer safe. So, Merrell takes this sort of, you know, reckless, optimistic, idiotic, you know, criminal, like, you know, so many adjectives you could throw at it, but essentially, they choose not to withdraw the application.
They send a few, I’ll call them light letters, to a few clinical investigators, basically saying that they’re not alarmed, you know, this is what’s happened, you know, maybe proceed cautiously.
So yes, you have months and months and months go by where this drug is still freely circulating. the public has no idea. Most doctors have no idea. This story has been resolved, by all accounts, in Europe. But in the United States, this drug is still, you know, zipping around from doctor’s office to doctor’s office and being handed to women.
And it’s absolutely bonkers to think how many months that went on. It wasn’t a matter of weeks, it was months.
Katie Hafner: And then the other big question.
Once Frances Kelsey knew how harmful it was and all those dots had been connected, did she know about all those detail men, Merrell’s sales guys, and how many pills had been distributed around the U.S.? And what did she do in order to investigate how many American survivors there were?
Jennifer Vanderbess: So as soon as this news hits the FDA, some portion of it is sort of removed from her purview, right? Like she understands, oh my God, this drug is harmful. She starts making phone calls, and what she starts hearing, which is basically what the FDA encounters is, Oh yes, we do have a few babies at this hospital, born with phocomelia, but no, they weren’t given the drug.
Katie Hafner: At this same hospital, this incredibly rare, okay.
Jennifer Vanderbess: Right, exactly, where you should only see one case every 30 years, oh yes, we had five in the last two years, oh yes, it was in the hospital pharmacy, but no, all the doctors are saying that that wasn’t exposure.
It’s interesting to talk about sort of pharmaceutical greed, which I think everybody would sort of nod their heads nowadays and say oh, yeah, yeah, yeah, we get. For me the really shocking component of this story was realizing how many physicians, after the fact, knew what they had given these women.
Knew that they had contributed and participated. You know, not their fault. But they had information that was very essential to share and they chose not to.
One of the early, rare court cases, which is a case of David Diamond, whose mother had been visiting the Cleveland Clinic, her husband, I think, was suffering a heart attack, she kind of is in the hospital corridors, having an anxiety attack, and someone hands her an envelope with some sedatives.
You know, six months later, seven months later, she gives birth back in Philadelphia, and her son has phocomelia. When they finally read the news about thalidomide, she kind of puts two and two together and says, wait a second, what were those pills I was handed in Cleveland? Well, you could not get a single doctor in that hospital to acknowledge That she was given thalidomide, and it ends up in this sort of fantastically dramatic moment, like out of, you know, Paul Newman’s “The Verdict,” where they actually have to track down the nurse.
This takes years, they finally find the nurse who handed her the envelope. She’s the only one who will admit that the woman was given thalidomide.
Katie Hafner: Why is it that the doctors didn’t step up? Was it fear of some kind of retribution? Was it they, they’d done something wrong? Was it that they just didn’t care?
Jennifer Vanderbess: I mean, I think that they realized that they were distributing an unapproved drug that was officially in clinical trial state, and they were not conducting clinical trials. There was complicity there. You know, they did it trusting the pharmaceutical company. They did it thinking everything was okay, but I think had push come to shove, they would have been accountable.
The uniformity, the across the board denial and misrepresentations really struck me. And an important part of the story for the survivors and frankly their challenging and fraught relationships with their mothers. One of the more interesting components of working on this story was understandably a lot of them would have a lot of resentment towards their parents and particularly their mothers for not wanting to talk about it.
And I remember coming to one of the meetings with the survivors and I said, you know, I’ve talked to some mothers, I did a lot of research, I want you to know how your mothers were treated. We need to hit pause for a second and understand how gaslit and horrifically you know, in some ways abused these women were, and at least as a context for understanding why these women for decades never wanted to revisit the conversation.
It was a highly, highly traumatic event for them, and they, a lot of them just weren’t able then to revisit it for the sake of their children.
Katie Hafner: So, circling back to Francis, you know, one of the pitfalls, one of the dangers with Lost Women of Science is to glorify and idolize the woman we’re profiling. And we have to be very careful with that.
And you wrote something that really got my attention, which was, For too long the narrative has focused on Frances Kelsey, the heroine who, quote, blocked a drug already, it turns out, in wide use. Francis still looms as a patron saint for thalidomide survivors worldwide.
She alone suspected the drug’s risks. She undeniably spared thousands of American babies from harm. And then you write, but there is a whiff of envy that she became the American face of the story, while others remained invisible. Talk a little bit about this tendency to turn someone into a hero, and specifically Frances Kelsey, and where you stand on this and why you wrote that.
Jennifer Vanderbess: Yeah, I mean, Frances Kelsey being a hero was an orchestrated event, right? It’s important to go back to 1962 and realize that Morton Mintz, who broke the great story of Frances Kelsey, was given a tip by Senator Kefauver’s, you know, drug hearings team who had desperately been toiling away for years to try to get, you know, drug safety legislation passed.
The country had lost interest, the press had lost interest, there was, there’s nothing sexy about charts showing pharmaceutical greed. And they needed something, they needed a story, they needed a face. And they hear about Frances Kelsey and the light bulb goes off and it’s like, she’s our girl. Okay, she’s great, she’s perfect, she’s this hardworking, industrious, ethical, overachieving, mother of two, you know, everything about her sort of spins America’s heads, you know, it’s just before the “The Feminine Mystique,” everyone’s like, what, she has a career, what’s that about, right, you know, everything about her is sort of perfect to save the day, and she does, and she is, and she does her job incredibly well.
However, when I came to this story, If anyone ever did an article about thalidomide, they wrote about Francis Kelsey, and they never even tried to pick up a phone and talk to a survivor.
For the American survivors who started to get wind slowly over time that this was their origin story, that the tragedy of their life was thalidomide.
And every time the word thalidomide appeared, it was just a lovely picture of Frances Kelsey. That doesn’t make her a bad person or a failure. I think the failure is more one of the press. And a kind of affinity that we sometimes have for a sort of happy, easy narrative. And we had a happy, easy narrative for decades.
She saved the day. No harm done. She was fantastic. I mean, here’s the question, right? Frances Kelsey. Could she have made more noise? Was there more that she knew that she could have blown the whistle on?
It’s a, it’s an interesting question. I would say that given the nature of her personality, she was not, you know, tear into the FDA Commissioner in front of Congress, she was not what you would traditionally call a whistleblower. That was not her thing, and I don’t think she had proof names or numbers that could have, in any way, concretely gone public. You know, she could not have said, Gene Grover in Cincinnati is a thalidomide survivor.
She, you know, she didn’t have that information. She tried, I mean, you know, I went through, and I had this conversation with her daughters at one point, because, you know, I had gone into this story, I met them, and I said, oh, you know, I’m working on this, that, whatever.And then I remember a pivot point in the conversation where I had to say to them, I need to let you know there are a lot more survivors Then your mom knew about, spoke about, and I shared with them and I said, look, from everything I can see in her papers in the FDA, I see her trying to, you know, she does everything short of, you know, noisily quitting, right?
But absolutely making the phone calls and trying to get whatever information she can. I believe that the leak of the names of the doctors, the, Commissioner Larrack in the 1960s is very adamant that they’re not going to release the names of the doctors, they’re not going to release it, they’re not going to release it, and then one day, somehow, it leaks. I’m fairly sure, I would guess that that came from Frances.
Katie Hafner: Right.
Jennifer Vanderbess: Here’s the question I would like to ask. I would like to have the conversation with her, and have her experience what her daughters experienced which is to say, can you meet these survivors? Right? I found them, and you know, and there are scores of them. What went wrong, how is it that this piece, what went wrong? Why was the door closed on this story? Why did everything get filed away? Why did it stop?
I think that would be a question, and, and again, it’s not on her shoulders personally to solve, you know, for 60 years to take on, you know, the whole narrative of this, of this drug, but was there more that could have been done in 1962 or 1963? And, and I would also say, does she know anything more about why the drug firm was never criminally charged? I think that’s a huge horrific piece of the story, failure of the U.S. government, that speaks to why they do have significant accountability to the victims.
There are a lot of, there are a lot of players that have culpability and a lot of victims that have never received, you know, a scent of help as pertains to this particular injury and it’s, it’s startling.
Katie Hafner: That’s a very good point.
Jennifer Vanderbess: I would also say, I mean, you know, as a citizen myself, to think about the drug protections that we enjoy today, that were passed finally in 1962, literally came on their backs and their bodies.
Like, it was thalidomide, it was what happened to them, that actually gave us the right to know what a clinical trial is. I think, as a community, as a society, we owe them the right to just live out their lives, you know, with as much health and happiness and comfort as we can because we sure got a lot out of them.
Katie Hafner: Well, I am now officially a huge fan of yours. Thank you so much for coming on to our Conversations feature of Lost Women of Science. It’s such a marvelous book, and it’s so well told.
Jennifer Vanderbess: I’m so happy for you guys to be doing a story on Francis Kelsey and covering thalidomide and for having me on and thank you so much. I’m really glad this is getting out there.
Katie Hafner: This has been Lost Women of Science Conversations. I’m your host, Katie Hafner. This episode was produced by Sophie McNulty. Our thanks go to Jennifer Vanderbes for taking the time to talk to us. Lexi Atiya was our fact checker, Lizzie Younan composes all our music, and Lily Weir designed our art.
Thanks to Jeff DelVisio at our publishing partner, Scientific American. Thanks also to my Co-Executive Producer, Amy Scharf, Senior Managing Producer, Deborah Unger, and Program Manager, Eowen Burtner.
Lost Women of Science is funded in part by the Alfred P. Sloan Foundation and the Anne Wojcicki Foundation. We’re distributed by PRX. Thanks for listening, and do subscribe to Lost Women of Science at lostwomenofscience.org, so you’ll never miss an episode. And don’t forget to click on that all important, omnipresent donate button.
See you next time.
Episode Guest: Jennifer Vanderbes
Jennifer Vanderbes is an award-winning novelist, journalist, and screenwriter whose work has been translated into sixteen languages. In 2023, Vanderbes returned to investigative journalism with her first nonfiction book, Wonder Drug: The Secret History of Thalidomide in America and Its Hidden Victims.
Host: Katie Hafner
Producer: Sophie McNulty
Further Reading:
Autobiographical Reflections.Frances Oldham Kelsey. U.S. Food and Drug Administration
