Whereas researching her guide in regards to the historical past of thalidomide within the U.S., Jennifer Vanderbes found that there have been way more individuals harmed by the drug within the U.S. than initially thought—no less than 10 occasions extra. These people had been born with shortened limbs and different critical medical circumstances after their dad and mom took thalidomide throughout being pregnant in so-called scientific trials within the late Fifties and early Nineteen Sixties.
Marvel Drug tells the story of Vanderbes’s trek throughout the U.S. searching for thalidomide survivors. It additionally revisits the position of the U.S. Meals and Drug Administration medical reviewer Frances Oldham Kelsey—the topic of our latest five-part season—who refused to approve thalidomide on the market within the U.S. Within the strategy of writing her guide, Vanderbes turned an advocate for the survivors, now of their 60s, and their seek for justice and help.
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TRANSCRIPT
Jennifer Vanderbess: Once I got here to this story, if anybody ever did an article about thalidomide, they wrote about Francis Kelsey, they usually by no means even tried to select up a cellphone and discuss to a survivor.
Katie Hafner: I am Katie Hafner, and that is Misplaced Ladies of Science Conversations, the place we discuss to authors and artists and poets and filmmakers in regards to the work they’ve carried out to uncover and rejoice neglected girls in STEM.
Over the previous 5 weeks, we have been delving into the story of Dr. Frances Kelsey, a medical reviewer on the U. S. Meals and Drug Administration.
Within the early Nineteen Sixties, she prevented hundreds of infants from being born with shortened limbs, listening to loss, weakened organs, and different horrible accidents they sustained within the womb.
When you’ve listened to the entire season, you may know that it was Frances Kelsey who stood her floor and wouldn’t approve thalidomide, the drug that precipitated all of those accidents.
However you may even have heard that thalidomide was truly obtainable in the USA. Greater than 1,200 American medical doctors throughout the nation had been despatched drugs by the corporate that needed to fabricate and distribute the drug. They had been a part of a community of medical professionals requested to hold out scientific trials, resembling they had been, with little oversight or steerage.
So right now, we have determined to place out an episode that zeros in on that quiet unfold of hundreds of thalidomide drugs throughout the U. S. and the following seek for survivors. And to do that, I am delighted to welcome a well-recognized voice to those that’ve been tuning into the season, Jennifer Vanderbess.
Jennifer is the creator of the guide “Marvel Drug: The Hidden Victims of America’s Secret Thalidomide Scandal.” The guide was printed in 2023 and the paperback is out simply now. Within the guide, Jennifer uncovered what occurred to these drugs and the individuals who took them right here within the U.S.
Jennifer, welcome to Misplaced Ladies of Science.
Jennifer Vanderbess: Hello, Katie. It is nice to be right here.
Katie Hafner: So I’ve to say, initially if you embark on a nonfiction guide, it is, you realize, it turns into like this magnificent obsession, proper?
Jennifer Vanderbess: Appropriate. And that is your choice is, you realize, that is this factor I’ll be engaged on eternally and ever. So I needed to ask you, if you determined to put in writing the guide, you knew there have been books about thalidomide.
It had been lined quite a bit so that you knew you had lots of materials to work with. On the identical time I needed to ask you, how did you need your story to vary from people who already existed? And in addition, I do need to say, I imply, what an unimaginable bummer of a topic. So, so are you able to reply type of each these questions?
Why resolve to immerse your self in such a miserable subject?
Jennifer Vanderbess: It’s an ideal query. I imply, on the time, my entry level into this story had been the heroes, Francis, Kelsey, the first one on this story, who had kind of been in these glamourless bureaucratic posts doing their everyday work and rose to the event to forestall this horrible tragedy from occurring in the USA.
So, there was a miserable element to the story, however I assumed what I used to be narrating was the heroism of common individuals, you realize, who heed the decision. So I used to be actually impressed by the story once I went into it. And I did not fairly know the scope of it, as you talked about. Thalidomide and the thalidomide scandal, which truly occurred worldwide, was not an unknown information merchandise, proper?
I might heard about Francis Kelsey. What struck me first truly was that almost all of what had been written about her prior to now, for example 10 years earlier than I began work on the guide, was just about precisely the identical as what had been written about her within the Nineteen Sixties.
Nobody had actually circled again to her. Nobody had carried out any further digging. And that was just about true of all of the books that I might learn on the topic. And there weren’t tons of them. There have been a restricted quantity.
Katie Hafner: Are you saying that her story was accepted at face worth or are you saying that nobody had superior the story past that time period in historical past or a bit of little bit of each?
Jennifer Vanderbess: There was a bit of little bit of each. There was a bit of little bit of case closed. The story that had been delivered was an ideal one. She was a hero. America was spared the results of this horrible, you realize, drug that had affected infants worldwide. You realize, JFK offers her an award on the White Home garden.
It is a fabulous story. The FDA makes use of it to recruit new medical reviewers. Great, great. Once I got here to it, I began doing my preliminary analysis, and I used to be studying, you realize, what we name secondary sources. I used to be studying books. I used to be studying, you realize, articles. What struck me is that they had been all referencing just about secondhand sources from the Nineteen Sixties.
Nobody had gone and checked out any FDA information. Nobody had actually carried out any type of digging into the story past what had been introduced, you realize, in 1962 is the top of the story. And I occur to remember on the time that her papers had landed on the Library of Congress. And that another papers and paperwork regarding individuals peripherally linked to the story had been obtainable.
There was much more that subsequently was revealed, there have been the FDA beneficial felony fees be pressed in opposition to the pharmaceutical firm; these additional developments and additional revelations actually went unreported on. Throughout the board.
Katie Hafner: And also you knew that as you had been going into the guide.
Jennifer Vanderbess: Yeah, nicely, you realize, it isn’t like writing about World Struggle II the place there are tons of and tons of of books and memoirs and letters and you may by no means wrap your arms round it, proper? There are, you realize, a restricted variety of books that had been written on the topic.
A restricted variety of lengthy articles. I used to be in a position to learn every thing. I used to be in a position to kind of dive in and say, okay, what’s been touched, and what hasn’t been touched, and I’d additionally add that one of many issues I felt I might convey to the story or particular curiosity that I had, and it pertains to the, you realize, the overarching title of your complete collection, The Misplaced Ladies of Science, I used to be very , not simply in Frances Kelsey, however in some girls that had been famous very peripherally within the story of, as having contributions.
And I, as a girl, author, mom, very a lot noticed the story of thalidomide as a narrative in regards to the issues of girls being sidelined by the medical institution. I feel it is the primary large kind of splashy model of that type of tragic story. You realize, girls’s well being not being correctly addressed by prescription drugs.
And so I used to be very desirous about the truth that actually on the American facet of the story, the important thing gamers in preventing thalidomide had been girls and ladies medical doctors. And I needed to get extra details about these different gamers, Barbara Moulton and Helen Taussig and I chilly known as a niece of Barbara Moulton and received her on the cellphone, and nobody had ever requested her questions, and only for reference, Barbara Moulton had mainly had Frances’s job on the FDA earlier than she received there, and she or he turns into you realize, an ideal buddy and ally, however nobody had ever interviewed her relations.
So what I additionally felt, along with kind of making an attempt to do a deeper dive into analysis, was an curiosity in actually bringing to mild the tales of those numerous girls who had been so important in retaining the drug off the market.
Katie Hafner: So that you had this epiphanous second if you wrote to your editor and also you realized what?
Jennifer Vanderbess: Yeah, so I had proposed this guide utilizing the knowledge that was extensively circulating for many years, which is that there have been about 17 American infants harmed by the drug thalidomide, and about half of these had been purported to be as a consequence of publicity from abroad thalidomide. So it is purported to be a really small quantity, and by all accounts, most of these people had not lived into maturity.
Katie Hafner: Proper, so if you say from abroad that anyone would go abroad, discover the drug. The truth is, we begin the primary episode of the season with Sherry Chesson and her husband was in England and got here again with Distavol, which is how thalidomide was branded and she or he took it, and so that you simply’re saying that that’s what it was chalked as much as is individuals having gotten the capsule abroad.
Jennifer Vanderbess: Yeah, and for half of these FDA circumstances, that was correct. So the story was that, you realize, Francis Kelsey had not authorised thalidomide, due to this fact a really, very small variety of infants had been uncovered to it via what was urged to be a really small variety of scientific trials. I put that in my proposal you realize, for Random Home. That was a part of the story I assumed I used to be telling.
Katie Hafner: That there have been 17.
Jennifer Vanderbess: The 17. And I, I do not know why besides, you realize, the character of engaged on a nonfiction guide like this that kind of at all times feels prefer it will get a bit of greater and a bit of stranger is that I, you realize, generally late at evening I’d simply Google issues I might already Googled simply to see if, I do not know, one thing completely different got here up, proper?
And I do not know why or what precisely I assumed I used to be searching for, however I used to be Googling one thing associated to American thalidomide survivors and I bump into this fundraising web page for an American thalidomide survivor to go and meet different American thalidomide survivors. And I simply, my jaw dropped. Like, what is that this?
Who is that this? That is not possible. What are the probabilities that that is actual? So mechanically, I simply, the proportion simply abruptly shifted. I knew one thing was unsuitable. The mathematics was not going so as to add up. This did not make sense. And I instantly wrote to my editor and agent and I stated, FYI this, this guide may be about to take a flip, however I’ve to pursue this.
And I’ve to succeed in out to this lady, I’ve to start out discovering out what that is. And in the end, that fully modified the course of the guide. Inside a brief time period, I used to be on planes flying throughout the nation to satisfy survivors. I used to be in intensive contact with dozens of them, speaking to a few of their moms and, you realize, my, my great editor, you realize, understood that this was the story, and that the story, the story had modified, and this was what the guide needed to be, and this was the large discovery of the guide.
Katie Hafner: Mm hmm. So it appears like what you are saying is that the, what modified was simply how widespread the impact of thalidomide was within the U.S. That was your discovery, simply the actual fact that there have been way more survivors than was beforehand thought. Is that, simply to place a, a positive level on it.
Jennifer Vanderbess: Sure, that there was, someplace between a mistake and an enormous fats lie.
Katie Hafner: And so your guess, is it only a guess on the variety of American thalidomide survivors there are?
Jennifer Vanderbess: I’d say there have been a pair hundred simply injured by the drug. There have been infants that had been injured and stillborn. There have been infants that had been injured and died a yr or two into their lives. There are survivors that we all know of who, you realize, did not make it previous their forties.
I’d say now there in all probability are a couple of hundred residing within the U.S., and it is, it is a difficult quantity to determine as a result of we lack what their abroad counterparts lack, which is a kind of concrete proof. And the accidents can range extensively. However I feel the numbers are on par with the Canadian survivors.
I feel the drug was so widespread right here. That you just had as, you realize, about as many accidents because the Canadians noticed in, in a rustic the place it was legally distributed. Yeah, I am very concerned with the American Thalidomide group and we nonetheless have individuals emailing, you realize, each few weeks.
And it is both, I feel I may be a survivor or a quite common story is we had a sibling. I do know that my mom had a child. After me, I used to be three. I bear in mind one thing, one thing. They did not wish to discuss it. Proper? I imply, that is a fairly frequent outreach. The surviving siblings of a thalidomide child in a household that did not know what to make of it.
Katie Hafner: And is it true that to today the USA stays the world’s sole developed nation that refuses to help a single thalidomide sufferer? Is that, is that true?
Jennifer Vanderbess: Sure. Sure. Completely. They usually’re, they’re preventing
Katie Hafner: They being the thalidomide survivors.
Jennifer Vanderbess: Sure. Sure.
Katie Hafner: Talking of which, there is a, there is a well-known, very messy case Hagens Berman. Are you able to inform me about that?
Jennifer Vanderbess: So there is a regulation agency in Seattle that has mounted lots of very well-known profitable class motion fits in opposition to massive wrongdoers. They heard in regards to the thalidomide story after a really profitable case in Australia, during which some grownup survivors who hadn’t beforehand been acknowledged had been in a position to get compensation.
This American agency got interested they usually began you realize, inserting adverts and, and looking for no matter American survivors they may. They gathered, I feel it was about 50 or so of their first submitting, they usually introduced it to a court docket. Now, we have now a factor in the USA known as the Statute of Limitations, which makes it extremely onerous to convey a go well with many years later.
And this has been sitting, I imply, boy, I imply, nicely over a decade in a Philadelphia court docket. As a decide and another individuals concerned attempt to untangle whether or not or not this case can actually even be heard. And whether or not or not the survivors can set up that there is a motive they did not know till just lately, that they had been thalidomide survivors.
My hope within the guide and I did one thing I by no means thought I’d do, however I kind of insert myself as a personality on the finish as a result of it turned not possible to inform the story in truth with out acknowledging that my position as an creator, assembly individuals on this group, doing analysis that was very pertinent to their lives, their authorized circumstances, their story. There was merely no option to faux that the, the writing of this guide and the analysis wasn’t truly impacting the story.
Katie Hafner: Proper. It emboldened individuals and, yeah, that is a, I feel that was a really smart move in your half.
Jennifer Vanderbess: Yeah, and it was probably the most trustworthy option to go about it. And they’re nonetheless making an attempt to see if there is a universe during which this court docket case may be heard. What I assumed could possibly be useful in what I found within the guide, so when Hagens Berman introduced this case to protection, these pharmaceutical firms now, you realize, they have been wolfed up by bigger corporations and go by completely different names.
However their argument was, Hey, like, right here’s an article by Morgan Mintz from 1962. See, everyone knew that thalidomide was spherical and about. This made all of it clear. All people ought to have recognized within the Nineteen Sixties that they may have been uncovered to it. Introduced these lawsuits ages in the past. Finish of story. What I, they usually submitted to the court docket an inventory. It in all probability was 40 or 50 articles that had appeared within the Nineteen Sixties about thalidomide.
What I attempted to make clear within the guide is that in the true of it, you realize, when you reside in Mississippi and usually are not studying the “The Washington Put up,” you realize, this isn’t the age of Google the place you could have a child with shortened arms and also you simply kind it into your pc and it comes up like, oh, perhaps that is associated to thalidomide, to essentially set up how fully at the hours of darkness these households had been and you realize, to me, one of many greatest horror tales of this story just isn’t the drug itself, it is the complicity of the medical doctors alongside the way in which.
Katie Hafner: Nicely sure, let’s get into that. Let’s get into the complicity of the medical doctors alongside the way in which, as a result of what we have to clarify is how it’s that these drugs had been distributed in the USA. So why do not you inform me about that.
Jennifer Vanderbess: Yeah, so there was, you realize, we had an FDA when thalidomide was invented, and we had a course of, which was, you are a drug agency, you wish to promote a drug, okay, you’ll want to undergo the FDA an utility explaining what this drug is, the way it works, and you need to undergo them some human analysis, and we name these scientific trials, proper?
And these days, when you’re a part of a scientific trial, my guess is you have in all probability signed some intensive paperwork, you realize, acknowledging that you simply’re in a scientific trial, understanding the phrases, the dangers, or no matter. Nicely, in, in 1959, when you had been in a scientific trial, like, perhaps your physician knew, however you did not essentially know.
And additional, with thalidomide particularly, as a result of the drug had been offered abroad for a number of years and was so profitable, the method of Merrell, the American drug agency, once they needed to place it on the American market, was like, it is a slam dunk. That is like aspirin. Like, it has been circulating, it is positive.
You realize, scientific trial, shminical trial. So Merrell decides that for thalidomide, They are going to get the gross sales drive engaged earlier than FDA approval. So that they basically ship their complete gross sales drive across the nation to knock on doorways in hospitals.
They need medical doctors with probably the most entry to probably the most sufferers they usually say, you realize, FDA approval is like across the nook. That is the best drug ever. Go forward, you realize, we’ll ship you a number of thousand drugs. And that is how they begin.
By 1960, there’s kind of two issues occurring concurrently on this story. One is that this large stack of papers sitting on Francis Kelsey’s desk, and on the identical time, there are like a number of hundred salesmen hobnobbing in a lodge in Cincinnati, getting their marching orders about their new gross sales mission, which is to mainly sweep the nation, go hospital to hospital, physician to physician, and attempt to get these medical doctors as excited as potential about handing out thalidomide earlier than FDA approval.
Katie Hafner: And the explanation that Merrell was so scorching to trot on this drug is that Merrell noticed that the German firm that had first developed and offered the drug, Grunenthal was making a living hand over fist.
Jennifer Vanderbess: Sedatives within the Nineteen Sixties had been a gold mine. It was an period the place individuals believed that each, you realize, discomfort, nervousness, you realize, could possibly be solved, remedied by a capsule. These had been medicine that weren’t designed to deal with an sickness for every week. They had been going to be taken like on a regular basis medicine a number of occasions a day, hopefully into perpetuity.
This was probably the most profitable type of pharmaceutical you may put in the marketplace in 1960. They usually had been weapons blazing, able to go, and all they needed to do was get FDA approval and get Frances Kelsey to say, okay, go. She would not do this. However they saved distributing it to medical doctors, beneath the guise of scientific trials, and it is actually vital to essentially clarify that although they known as them scientific trials, When the FDA lastly investigated, these had been fully sloppy, undocumented, no information of sufferers, age, dosages, you realize, it was a scorching mess. And since they’d been so formidable and overzealous in representing this to medical doctors, the important thing a part of what went unsuitable within the American story is that once they lastly realized that over 1,200 medical doctors had formally been given the drug, in addition they found that these medical doctors had handed it to their pals.
So the quantity begins to double, triple, quadruple actually shortly. And the explanation why it turned onerous to not possible for the American survivors to ever concretely show that they got the drug is that their moms weren’t seeing a physician that was on that record of 1,200 official medical doctors. Their moms had been seeing medical doctors that had been pals with these medical doctors, working in the identical hospital, golf buddies. That is the way it unfold so perniciously and on this fully undocumented approach.
Katie Hafner: Unbelievable. That’s, it’s surprising. I imply and in addition, you realize, these girls had been simply being advised, Oh, it will allow you to sleep. Oh, it will assist with morning illness. Have been they given the morning illness line at that time as nicely?
Jennifer Vanderbess: The drug was distributed for every thing from morning illness to complications to menstrual cramps to nervousness. A whole lot of medical doctors truly consider that morning illness was not an actual medical situation.
Katie Hafner: Excuse me?
Jennifer Vanderbess: Proper, they, they simply believed that it was nervousness about doubtlessly an undesirable being pregnant, proper, that was a, that was a medical concept in circulation amongst male medical doctors.
So the explanation that it made sense to them to provide an anti-anxiety capsule was that they thought that that is what was truly on the root of what should be blamed for a girl to really feel nauseated. So that they had been handing it out for every thing.
Katie Hafner: Extra after the break.
Katie Hafner: All proper, so there’s Kelsey. Let’s circle again to her for, for a minute. She’s, she would not know any of this. All she actually is aware of is that she’s sad with the appliance. She sees holes in it. It is quote incomplete, incomplete, incomplete, and she or he retains throwing it again at them. And the Merrell persons are, particularly this one man, Joseph Murray. He is like going out of his thoughts as a result of he is promised his bosses that this factor was going to get rubber stamped.
Okay. So, all of it comes out, simply in a short time to make a really lengthy story shorter, the Germans withdraw it. After lots of strain, after having denied it for a very long time in November of 1961.
However can I inform you, Jennifer, that what I, via this whole season, what galls me greater than something, and I do know what you imply about how we aren’t within the age of Google, however the time lapse between when, for example, the Germans withdraw the drug from the market in Germany and others withdraw it elsewhere. Phrase would not get out in the USA. My major type of rant within the season is why was there this delay?
Jennifer Vanderbess: It is fascinating, I imply, of the numerous irresponsible issues carried out alongside the way in which, the kind of concrete information that the inventor and licensor of the drug in Germany removes it fully from the market due to documented issues that it is inflicting beginning defects and Merrell, the U.S. doesn’t withdraw their utility from the FDA.
Katie Hafner: However they knew it. They clearly they knew it.
Jennifer Vanderbess: And I will circle again to this superb gross sales drive that they’ve. Let’s simply say you discover out {that a} drug you have despatched across the nation is wreaking havoc. You need not mail letters. You’ve got received all these guys of their fits with their briefcases who can drive up and inform medical doctors immediately, cease giving it out.
They usually do not do this. The element males had been by no means even advised that the drug was now not secure. So, Merrell takes this kind of, you realize, reckless, optimistic, idiotic, you realize, felony, like, you realize, so many adjectives you may throw at it, however basically, they select to not withdraw the appliance.
They ship a number of, I will name them mild letters, to a couple scientific investigators, mainly saying that they don’t seem to be alarmed, you realize, that is what’s occurred, you realize, perhaps proceed cautiously.
So sure, you could have months and months and months go by the place this drug remains to be freely circulating. the general public has no concept. Most medical doctors don’t know. This story has been resolved, by all accounts, in Europe. However in the USA, this drug remains to be, you realize, zipping round from physician’s workplace to physician’s workplace and being handed to girls.
And it is completely bonkers to assume what number of months that went on. It wasn’t a matter of weeks, it was months.
Katie Hafner: After which the opposite large query.
As soon as Frances Kelsey knew how dangerous it was and all these dots had been linked, did she learn about all these element males, Merrell’s gross sales guys, and what number of drugs had been distributed across the U.S.? And what did she do with a purpose to examine what number of American survivors there have been?
Jennifer Vanderbess: In order quickly as this information hits the FDA, some portion of it’s kind of faraway from her purview, proper? Like she understands, oh my God, this drug is dangerous. She begins making cellphone calls, and what she begins listening to, which is mainly what the FDA encounters is, Oh sure, we do have a number of infants at this hospital, born with phocomelia, however no, they weren’t given the drug.
Katie Hafner: At this identical hospital, this extremely uncommon, okay.
Jennifer Vanderbess: Proper, precisely, the place you need to solely see one case each 30 years, oh sure, we had 5 within the final two years, oh sure, it was within the hospital pharmacy, however no, all of the medical doctors are saying that that wasn’t publicity.
It is fascinating to speak about kind of pharmaceutical greed, which I feel everyone would kind of nod their heads these days and say oh, yeah, yeah, yeah, we get. For me the actually surprising element of this story was realizing what number of physicians, after the actual fact, knew what they’d given these girls.
Knew that they’d contributed and took part. You realize, not their fault. However they’d info that was very important to share they usually selected to not.
One of many early, uncommon court docket circumstances, which is a case of David Diamond, whose mom had been visiting the Cleveland Clinic, her husband, I feel, was struggling a coronary heart assault, she type of is within the hospital corridors, having an nervousness assault, and somebody arms her an envelope with some sedatives.
You realize, six months later, seven months later, she offers beginning again in Philadelphia, and her son has phocomelia. Once they lastly learn the information about thalidomide, she type of places two and two collectively and says, wait a second, what had been these drugs I used to be handed in Cleveland? Nicely, you may not get a single physician in that hospital to acknowledge That she was given thalidomide, and it leads to this kind of fantastically dramatic second, like out of, you realize, Paul Newman’s “The Verdict,” the place they really have to trace down the nurse.
This takes years, they lastly discover the nurse who handed her the envelope. She’s the one one who will admit that the lady was given thalidomide.
Katie Hafner: Why is it that the medical doctors did not step up? Was it worry of some type of retribution? Was it they, they’d carried out one thing unsuitable? Was it that they simply did not care?
Jennifer Vanderbess: I imply, I feel that they realized that they had been distributing an unapproved drug that was formally in scientific trial state, they usually weren’t conducting scientific trials. There was complicity there. You realize, they did it trusting the pharmaceutical firm. They did it pondering every thing was okay, however I feel had push come to shove, they’d have been accountable.
The uniformity, the throughout the board denial and misrepresentations actually struck me. And an vital a part of the story for the survivors and admittedly their difficult and fraught relationships with their moms. One of many extra fascinating elements of engaged on this story was understandably lots of them would have lots of resentment in direction of their dad and mom and significantly their moms for not wanting to speak about it.
And I bear in mind coming to one of many conferences with the survivors and I stated, you realize, I’ve talked to some moms, I did lots of analysis, I need you to know the way your moms had been handled. We have to hit pause for a second and perceive how gaslit and horrifically you realize, in some methods abused these girls had been, and no less than as a context for understanding why these girls for many years by no means needed to revisit the dialog.
It was a extremely, extremely traumatic occasion for them, they usually, lots of them simply weren’t in a position then to revisit it for the sake of their youngsters.
Katie Hafner: So, circling again to Francis, you realize, one of many pitfalls, one of many risks with Misplaced Ladies of Science is to glorify and idolize the lady we’re profiling. And we have now to be very cautious with that.
And also you wrote one thing that basically received my consideration, which was, For too lengthy the narrative has centered on Frances Kelsey, the heroine who, quote, blocked a drug already, it seems, in broad use. Francis nonetheless looms as a patron saint for thalidomide survivors worldwide.
She alone suspected the drug’s dangers. She undeniably spared hundreds of American infants from hurt. And then you definately write, however there’s a whiff of envy that she turned the American face of the story, whereas others remained invisible. Discuss a bit of bit about this tendency to show somebody right into a hero, and particularly Frances Kelsey, and the place you stand on this and why you wrote that.
Jennifer Vanderbess: Yeah, I imply, Frances Kelsey being a hero was an orchestrated occasion, proper? It is vital to return to 1962 and notice that Morton Mintz, who broke the nice story of Frances Kelsey, was given a tip by Senator Kefauver’s, you realize, drug hearings crew who had desperately been toiling away for years to attempt to get, you realize, drug security laws handed.
The nation had misplaced curiosity, the press had misplaced curiosity, there was, there’s nothing horny about charts exhibiting pharmaceutical greed. They usually wanted one thing, they wanted a narrative, they wanted a face. They usually hear about Frances Kelsey and the sunshine bulb goes off and it is like, she’s our lady. Okay, she’s nice, she’s good, she’s this hardworking, industrious, moral, overachieving, mom of two, you realize, every thing about her kind of spins America’s heads, you realize, it is simply earlier than the “The Female Mystique,” everybody’s like, what, she has a profession, what’s that about, proper, you realize, every thing about her is kind of good to save lots of the day, and she or he does, and she or he is, and she or he does her job extremely nicely.
Nevertheless, once I got here to this story, If anybody ever did an article about thalidomide, they wrote about Francis Kelsey, they usually by no means even tried to select up a cellphone and discuss to a survivor.
For the American survivors who began to get wind slowly over time that this was their origin story, that the tragedy of their life was thalidomide.
And each time the phrase thalidomide appeared, it was only a beautiful image of Frances Kelsey. That does not make her a foul individual or a failure. I feel the failure is extra one of many press. And a type of affinity that we generally have for a kind of completely satisfied, straightforward narrative. And we had a contented, straightforward narrative for many years.
She saved the day. No hurt carried out. She was improbable. I imply, this is the query, proper? Frances Kelsey. May she have made extra noise? Was there extra that she knew that she might have blown the whistle on?
It is a, it is an fascinating query. I’d say that given the character of her character, she was not, you realize, tear into the FDA Commissioner in entrance of Congress, she was not what you’ll historically name a whistleblower. That was not her factor, and I do not assume she had proof names or numbers that might have, in any approach, concretely gone public. You realize, she couldn’t have stated, Gene Grover in Cincinnati is a thalidomide survivor.
She, you realize, she did not have that info. She tried, I imply, you realize, I went via, and I had this dialog together with her daughters at one level, as a result of, you realize, I had gone into this story, I met them, and I stated, oh, you realize, I am engaged on this, that, no matter.After which I bear in mind a pivot level within the dialog the place I needed to say to them, I have to let you realize there are much more survivors Then your mother knew about, spoke about, and I shared with them and I stated, look, from every thing I can see in her papers within the FDA, I see her making an attempt to, you realize, she does every thing in need of, you realize, noisily quitting, proper?
However completely making the cellphone calls and making an attempt to get no matter info she will be able to. I consider that the leak of the names of the medical doctors, the, Commissioner Larrack within the Nineteen Sixties could be very adamant that they don’t seem to be going to launch the names of the medical doctors, they don’t seem to be going to launch it, they don’t seem to be going to launch it, after which in the future, someway, it leaks. I am pretty certain, I’d guess that that got here from Frances.
Katie Hafner: Proper.
Jennifer Vanderbess: Right here’s the query I want to ask. I want to have the dialog together with her, and have her expertise what her daughters skilled which is to say, are you able to meet these survivors? Proper? I discovered them, and you realize, and there are scores of them. What went unsuitable, how is it that this piece, what went unsuitable? Why was the door closed on this story? Why did every thing get filed away? Why did it cease?
I feel that might be a query, and, and once more, it isn’t on her shoulders personally to unravel, you realize, for 60 years to tackle, you realize, the entire narrative of this, of this drug, however was there extra that might have been carried out in 1962 or 1963? And, and I’d additionally say, does she know something extra about why the drug agency was by no means criminally charged? I feel that is an enormous horrific piece of the story, failure of the U.S. authorities, that speaks to why they do have vital accountability to the victims.
There are lots of, there are lots of gamers which have culpability and lots of victims which have by no means acquired, you realize, a scent of assist as pertains to this explicit harm and it is, it is startling.
Katie Hafner: That is an excellent level.
Jennifer Vanderbess: I’d additionally say, I imply, you realize, as a citizen myself, to consider the drug protections that we take pleasure in right now, that had been handed lastly in 1962, actually got here on their backs and their our bodies.
Like, it was thalidomide, it was what occurred to them, that truly gave us the best to know what a scientific trial is. I feel, as a group, as a society, we owe them the best to simply reside out their lives, you realize, with as a lot well being and happiness and luxury as we are able to as a result of we certain received quite a bit out of them.
Katie Hafner: Nicely, I’m now formally an enormous fan of yours. Thanks a lot for approaching to our Conversations function of Misplaced Ladies of Science. It is such a wonderful guide, and it is so nicely advised.
Jennifer Vanderbess: I am so completely satisfied for you guys to be doing a narrative on Francis Kelsey and overlaying thalidomide and for having me on and thanks a lot. I am actually glad that is getting on the market.
Katie Hafner: This has been Misplaced Ladies of Science Conversations. I am your host, Katie Hafner. This episode was produced by Sophie McNulty. Our thanks go to Jennifer Vanderbes for taking the time to speak to us. Lexi Atiya was our truth checker, Lizzie Younan composes all our music, and Lily Weir designed our artwork.
Due to Jeff DelVisio at our publishing companion, Scientific American. Thanks additionally to my Co-Govt Producer, Amy Scharf, Senior Managing Producer, Deborah Unger, and Program Supervisor, Eowen Burtner.
Misplaced Ladies of Science is funded partially by the Alfred P. Sloan Basis and the Anne Wojcicki Basis. We’re distributed by PRX. Thanks for listening, and do subscribe to Misplaced Ladies of Science at lostwomenofscience.org, so you may by no means miss an episode. And remember to click on on that every one vital, omnipresent donate button.
See you subsequent time.
Episode Visitor: 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 together with her first nonfiction guide, Marvel Drug: The Secret Historical past of Thalidomide in America and Its Hidden Victims.
Host: Katie Hafner
Producer: Sophie McNulty
Additional Studying:
Autobiographical Reflections.Frances Oldham Kelsey. U.S. Meals and Drug Administration