Welcome to Stuff You missed in History Class, the production of I Heart Radios How Stuff Works. Hello, and welcome to the podcast. I'm Tracy V. Wilson and I'm Holly Fry. Today we are finishing out our two part are on the direct the litamide, which caused serious health problems and multiple disabilities and at least ten thousand people born in the late nineteen fifties and early nineteen sixties, so folks who are in their late fifties and early sixties. Today. We're recording this in twenty nineteen. Last time we talked about the direct itself and how it made it to market and how a crisis unfolded after its release, and today we're going to talk about the response to all of this, including criminal trials, changes the drug laws, and debates about the legality of abortion, and how this has really continued to evolve for the litamide survivors until today. This will probably not make much sense if you have not heard part one. Yeah, you'll be a little in the weeds. Uh. Again, we mentioned at the top of the other one at part one that this is, you know, a little bit more of a serious subject and not always the most comfortable discussion, So keep that in mind. There's still some appalling stuff in the realm of disability rights in terms of how people have been treated that kind of thing as well. So after thelidamide was withdrawn from the market, authorities started reviewing the case histories of people who were affected by the drug, including children born with fetal pilidamide syndrome and their parents, and adults who had developed permanent neuropathy and other nerve disorders. After six years of review, the bill of indictment that was delivered was nearly one thousand pages long. Ultimately, charges were brought against nine men who worked at Shami grunenthalogy mb H, which was the pharmaceutical company that had developed the litamide. This included owner and founder Herman Vertz, senior chief scientist Dr Heinrich Muchter, and seven other men. They were charged with involuntary manslaughter and intent to commit bodily harm, and their trial began on May seven, nineteen sixty eight. Criminal proceedings went on until nineteen seventy, with a panel of five judges hearing hundreds of hours of testimony from more than three hundred fifty witnesses and receiving tens of thousands of pages of evidence. Throughout it all, Grunenthal maintained that it's safety testing on the litamide had met the requirements of the time and that it could not have known that the drug could disrupt fetal development. But then, after nearly two and a half years, on December eighteenth, nineteen seventy, the panel of judges dismissed the charges. They did this with the approval of the prosecution, and Grunenthal was granted immunity from further criminal prosecution in Germany. At the same time, the company agreed to establish the Countergone Foundation, funded with one hundred million Deutsche marks matched by the West German government. More than two thousand, five hundred families who had pending civil cases were pressured to drop their lawsuits and to accept this settlement. Ins and the years since this happened, there have been many allegations of wrongdoing relating to this trial. In the UK's the Litamide Trust unearthed documents suggesting that there had been a secret, behind the scenes negotiation between Grudenthal, the German federal government and the state government of the state of North Ryan West Failure without any the Litamide survivors or their representatives present. Journalist Harold Evans reported on this through The Guardian and Reuter's. According to these reports, Hermandert Sr. Was at these meetings even though he had been excused from attending the trial for reasons of his health. The documents also suggested that State Minister of Justice Joseph Newbarger, whose department was overseeing the prosecution, had previously been a partner at Grunenthal's law firm. Yet that would be a huge conflict of interest. Meanwhile, Grudenthal's website now today maintains that quote Grunenthal is adamant that there was no secret deal or other politic interference to halt the trial. We are not aware of any evidence justifying these claims. The company's statement goes on to say, quote, the allegedly new documents were in part wrongly dated, and that the relationship between them was wrongly described or distorted by the attorneys. Also, in more recent years, some writers have looked into connections between Grunenthal and members of the Nazi Party. There is a whole conspiracy theory that solidimided was developed prior to or during World War Two and tested in concentration camps that does not appear to be true, but it is true that various people working at Grunenthal did have ties to the Nazi Party, which is frankly also true of a lot of businesses that operated in Germany during and after World War Two. Regardless of whether these claims about the trials are accurate, the end result was the same. The charges against eight Grunenthal employees and its founder owner were dropped, the company was given immunity from prosecution, and the Contragne Foundation was a ablished to provide financial support to families who were affected by the litamide. The foundation's operations are governed by German public law and today it's paying monthly pensions, annual pensions, or one time payments to people in thirty eight countries. Grunenthal has maintained that this settlement was quote widely supported by the parents of the affected children as well as the general public, but many solidamide survivors have said the opposite, Without even getting into the idea of compensation for the emotional pain and grief involved, many pensions just have not been enough to support the basic day to day needs of many people born with fetal solidomide syndrome. Payments from the foundation have been increased that a couple of points since it was first established, and today the maximum is eight thousand, one seventeen euros a month. Grnenthal also added an additional fifty million euros to the fund into and two thousand nine, but today the payments from the foundation are coming from the German government rather than from Grunenthal. There's also a separate Grunenthal Foundation that distributes non cash support, like modifying the litamide survivors bathrooms and vehicles to make them accessible. That eight thousand, seventeen euro number might sound like a lot, but living with fetal the litamide syndrome can be incredibly expensive. Many survivors require round the clock care or assistance, along with multiple surgeries and medications, physical therapy, and devices like powered wheelchairs with customized controls and lifts to move a person to and from the wheelchair. My mom's powered wheelchair cost more than my car. Yeah, that's an industry my husband worked in for a while, and there were some models that I was absolutely mind boggled when I saw the prices on them. Yeah. So, Apart from whether the financial settlement itself is enough money, many survivors have described the process of getting benefits as unnecessarily bureaucratic and difficult. Applicants have to document how they were exposed to the lidamide, including sending their medical records. Applications have to be submitted in German and there's a life certificate showing that the applicant appeared in person. People who don't live in Germany have to travel to a German embassy or consulate, although in some countries there are alternate locations that are like notaries or other other places. That includes in Brazil, Spain, the Netherlands and Great Britain and Ireland. If an applicant is physically unable to leave their home, or if the location where they're supposed to appear in person isn't accessible to people with disabilities, because that is still an issue in a lot of the world, the applicant can submit a certification from their physician. The Linamite survivors and their families have really criticized Grunenthal's actions and responses to all of this, including an apology that the company issued on August thirty one. The apology was delivered at the dedication to a memorial in Stolberg, Germany, and it depicts a sculpture of a young girl with fulk amelia wearing prosthetic legs as well as an empty chair. Yeah, a lot of people felt like Grunenthal did not need to be at that dedication at all, and then at it. Harold F. Stock, the CEO at the time, delivered this apology translated into English. It's said, in part, quote, Grunenthal has acted in accordance with the state of scientific knowledge and all industry standards for testing new drugs that were relevant and acknowledged in the nineteen fifties and sixties. We regret that the tar atogenic potential of the litamide could not be detected by the tests that we and others carried out before it was marketed. The statement later went on to say, quote, we also apologized for the fact that we have not found a way to you from person to person for almost fifty years. Instead, we have been silent, and we are very sorry for that. We asked that you regard our long silence as a sign of the silent shock that your fate has caused us. We have learned how important it is that we engage in an open dialogue with those affected and to talk and to listen to them. We have begun to mutually develop and implement projects with them to improve their living situation and assist in hardship situations easily and efficiently. We will continue to pursue this path in the future. Overwhelmingly, the lidamiters and their families did not find this sufficient. Parts of it definitely read as though they are saying, we're sorry, but it wasn't our fault. Exactly. If you go and read their f a Q and their website, there are a lot of things on it that kind of make you go, you didn't really answer that question, and also you're still saying it wasn't your fault. The immunity that was granted to Grunenthal when these charges were dismissed in nineteen seventy only applies in Germany. So there have been other court cases and civil suits in multiple other countries, both against the pharmaceutical companies that distributed the litamide in those countries and the governments that allowed them to do it, just as examples the UK, the Litamide Trust was established as the Litamide Children Trust in nine seventy three following a settlement between the Stiller's Company Limited in four nine disabled children who had been exposed to the litamide in Canada, A lawsuit against the litamides distributor there led to cash settlements and the establishment of a federal fund. The result of all of this is kind of a patchwork of programs and benefits that really vary from one country to another, with some paying benefits only if the applicant isn't getting support from somewhere else. Many programs also require documentation of the litamite exposure, which in some cases is simply not possible. One of the things we talked about is that sometimes people would share their medications with someone else, probably not any documentation there. Um. In the minds of many survivors, it also shouldn't be necessary since outside of the context of the litamite exposure, these patterns of disability are incredibly rare. Yeah, It's like there's sort of a choice between possibly paying benefit to somebody who has a similar disability that wasn't caused by the litamide, which is incredibly rare, or requiring all the litamide survivors to go through this huge rigmarole and a lot of effort to get basic support for day to day needs. Um. I didn't really write it in this outline, But there have also been some countries that have issued formal apologies or have talked about issuing formal apologies for not regulating the companies that were distributing the litamide more carefully before and during this whole crisis. So all of this is really really still ongoing. A financial support package known as the Canadian the Litomized Survivors Support Program or ct SSP, was announced on January ninth, twenty nineteen, so just this year, with an application period running until June. That follows on to earlier programs from and this is intended in part to allow survivors who were previously turned down for a lack of documentation to reapply, and it's ongoing in another sense as well. The solidamide survivors who were born in the nineteen fifties and sixties are in their late fifties and early sixties now. Numerous surveys of survivors in various countries have reported that their general health and quality of life are decreasing as they age. To quote from the result of a survey conducted in the UK, quote, as the litamide survivors reach their mid fifties, they are experiencing a wide range of secondary health problems, in particular muscular skeletal problems and depression and anxiety, with multi morbidity a growing issue. These health problems are having a negative impact on their employment. Two fifths are unable to work and their physical health related quality of life, which is significantly poorer than the general population. Some of this is exacerbated by the fact that many the litamide survivors have compensated for missing or shortened limbs by using their other limbs instead, so for example, using their feet in place of hands, and this means that they're particularly susceptible to overuse injuries, joint issues, and other muscular skeletal problems. This also means that many thalidomie survivors are needing additional care and support while simultaneously reaching retirement age or being unable to work because of their disabilities and health conditions. And many of those who are receiving support from one of the Solidamie survivor funds were evaluated when they were much younger, so they need more now than they did when they were initially approved, and the dollar amounts that they've been granted have not necessarily been adjusted for inflation. Plus some of these funds will only pay for specific types of treatments and services, and not for things that aren't regarded as a medical necessity. But a lot of thelidamide survivors report that what they actually need the most help with is day to day tasks like housekeeping and personal hygiene, which some funds won't cover. Some funds also won't cover things that weren't directly connected to the litamite exposure. So, for example, of fund might pay for prosthetic arms because a person's folk amelia was directly caused by the litamite exposure, but not pay for physical therapy to address an injury that resulted from using feet in place of missing hands. We are going to take a short break before we talk about some of the changes to disability rights, medicine, and the law that followed the the litamide crisis. Back in part one, we talked about how in many parts of the world, the first response to newborns who had been exposed to the litamide was a sense of hopelessness and recommendations that be placed at institutions. Those attitudes started to shift hospitals and other practices that had specialized in fitting patients with prosthetic limbs, a lot of them had initially been focused on veterans of wars turned their attention to making limbs that were suitable for children. Soon specialists were working on a range of limbs that were appropriate for different stages of a child's development, and on new types of press dcs that could work with different types of folk amelia. There's obviously still a long way to go in terms of accessibility and social attitudes about disability, but it was a start. And also, I don't want us to give the impression that every thalidomide survivor uses press decies. It really depends on what an individual person is comfortable with and wants to use and what works for them. Attitudes about congenital conditions and disabilities also started to shift in the wake of the thalidomide crisis. The field of teratology, or the study of malformations during development, was still very new. It's generally noted as being established in the nineteen thirties, and before that point there had not been much research into how a substance or condition could affect development in uteroone. It had been established that some things could negatively affect how a fetus developed, including a lack of vitamin A or vitamin B, or the rubella virus. The general public often thought congenital disabilities or health conditions were brought on by natural forces or were just random, and there were lots of superstitions and religious and spiritual beliefs that were kind of baked into this whole idea and muddied the waters a bit. The The litamide crisis prompted a lot of research into teratology in general, with the first medical journal dedicated to it established in the nineteen sixties. I feel like at timelines of of teratology as a field, a lot of times there's literally a pre the litamide and post the litamide era in the timeline. Researchers started studying which drugs can pass through the placenta and what allows them to do that while other drugs can't. And then there have also been hundreds of studies into the litamides specifically over the decades. It's only been in the last couple of decades that researchers have started to figure out exactly what causes the litamides teratogenic effects without getting too deep into chemistry, because there are about ten different terms involved. That we would have to define. This solidimide molecule exists into configurations which are essentially mirror images of each other. The one known as the R configuration acts as a sedative, the one known as the S configuration is a tarata gym, and the R configuration can be converted into the S configuration within the human body. So even if drug manufacturers made a very pure version that only included the R type of the drug, it's still would not be safe during pregnancy. Research is still ongoing into exactly how the S configuration disrupts fetal development. I found five different headlines spanning more than a decade that each claimed that researchers had finally figured it out. This is a thing that's building and discovering new elements of figuring it out. The most recent of these came from Dana Farwork Cancer Institute in August of eight teams, so just last year, according to the press really ease quote. Building on years of previous research, the researchers found that the litamide acts by promoting the degradation of an unexpectedly wide range of transcription factors cell proteins that helped switch teams on or off, including one called SAL four. The result is the complete removal of SAL four from cells. Aside from these shifts in public awareness and attitudes and the huge growth of a huge field of medical research, no single drug has had a bigger impact on pharmaceutical regulations than the litamine. In much of the world, the pharmaceutical industry was really growing without a lot of regulations in place in the nineteen fifties and nineteen sixties. In May of nineteen sixty three, British Minister of Health Kenneth Robinson said, quote, the House and the public suddenly woke up to the fact that any drug manufacturer could mark any product, however inadequately tested, however dangerous, without having to satisfy any independent body as to its efficacy and safety. And the public was almost uniquely unprotected in this respect. So these new laws, and I mean they are really all over the world, set much more specific standards into how drugs had to be tested, including animal testing meant to confirm whether a drug is safe during pregnancy before it's tested on or administered to humans. In places where abortion was illegal, the palidomide crisis also became part of debates about legalizing it or adding additional exceptions to the existing law. In the US, for example, abortion was a felony, and usually the only exception was if the mother's life was at risk. Along with a rubella epidemic that was happening at roughly the same time, the palidomide crisis led to discussions about whether the law should be expanded to include exceptions for pregnancies in which the baby would not be able to survive after being born, and there were also people who used the crisis to support a eugenics argument in the context of abortion, either to support the idea of allowing abortion for eugenic purposes or to advocate for keeping abortion illegal because of its potential use for eugenics. This became national news in nineteen sixty two. Sherry Chessen was the host of Arizona's locally syndicated version of the children's TV show Romper Room. Her husband had brought some medication home with him from a trip to London, and she had taken some of it early in her pregnancy with their fifth child. Later, she read an article about Dr Francis Oldham Kelsey's work to prevent the litamite distribution in the United States, and she realized that it was the same drug that her husband had brought home with him. Chessen talked to her doctor, who contacted doctors in Europe and then recommended that she terminate her pregnancy. Chessen later described this decision as absolutely agonizing, and she was also afraid that the same thing might happen to other women, so she told her story to the Arizona Republic under the understanding that her identity would be kept confidential. Chessen's name became public after the hospital ultimately turned down her request for an exception and her attorney filed suit on her behalf. She lost her job, she got hate mail and death threats, including threats to her other children. Chested and her husband ultimately had to travel to Sweden, where abortion was legal, to terminate the pregnancy. Although it's no longer manufactured or distributed by Grudenthal, the litamide has been reintroduced in several parts of the world in the years since it was banned. That's something that we're going to talk about in just a moment. And as different regulatory agencies have tried to figure out how to minimize the risk to developing fetuses, abortion has continued to be part of this conversation, and that conversation has also included the litamide survivors themselves. During advisory committee meetings related to the reintroduction of the litamide, Randolph Warren, the founder of the Lidamide Victims Association of Canada, stressed the need to consider the possibility of abortion in this context, saying, quote, people should not be forced to sign anything that would force them to have an abortion should a the litami be born, because we have some quality of life and some right to be here. A lot of these questions about the lidamide and abortion in general are still ongoing in many parts of the world today, and we're going to talk about the reintroduction of the lita mine after we take another sponsor break. It wasn't long at all after the litamides worldwide ban that doctors began discovering that it could have medical use as an adult patients beyond being a sedative. In nineteen sixty four, so just two years later, doctors at a hospital in Jerusalem gave the lidamide to a patient who had advanced Hanson's disease, which is also known as leprosy. This patient was in very severe pain and could not rest, so a doctor administered some the litamide that he had on hand, basically as a last resort. This doctor, j GB chess Can, realized that that the litamide also treated some of the diseases symptoms beyond just being a sedative. The World Health Organization conducted a clinical trial of solidamide as a Hanson's disease treatment in nineteen sixty seven. Today, it's used in some places to treat your thema a dosum laprosum or e n L, which is a complication that causes painful nodules, high fever, and inflammation. The litamide is approved for treating E n L in some parts of the world, but the World Health Organization does not recommend it because of its teratogenic effects and because there are other drugs that can treat E n L. Yeah. Even though today hanson disease can be treated with a very long course of multiple antibiotics, this complication can happen during the process or even afterwards. So even though Hanson's disease is more treatable than it used to be, this particular complication still does happen for people. Since then, the litamide has also been discovered to be effective against a number of other serious diseases and conditions and complications, including AIDS, wasting syndrome, and multiple miloma. Because it can inhibit the growth of blood vessels, it's also effective and cutting off the blood supply to certain cancers. This has of course been an incredibly difficult and sensitive topic amongst the litamide survivors in their families. In the words of Randolph Warren from an article in f DA Consumer in two thousand one, quote, we will never accept a world with solidamide in it. However, we are forced to prefer licensing of the drugs that disabled us for compassionate reasons and to prevent uncontrolled access to the drug. Yeah. I mean, no group of people is a monolith. People all have their own opinions. But as a group, the litamide survivors in general have been like, we're not going to try to stop you from keeping people who need this drug from having it, but we have got to protect people. So, for example, when the US was trying to set standards for prescribing the litamide for multiple mileoma and hands and disease, Warren and the the Linamide Victims Association of Canada were part of that process, including attending advisory committee meetings with the Food and Drag Administration in the National Institutes of Health. The result from all these meetings was the system for the Lidomide Education and Prescribing Safety Program known as STEPS, which is now called Risk Evaluation and Mediation Strategy or REMS. REMS is very involved, providers have to be certified, and distribution of the drug is highly restricted. Patients who could become pregnant are counseled on the risks of the drug. Along with contraception and emergency contraception. The litamide can also be present in siemens, so male patients whose partners could become pregnant are required to use condoms even if they have had a vasectomy or if their partners are using contraceptives, and this is really just the beginning. Patients who could become pregnant are required to have two negative pregnancy tests before starting treatment. They must use two forms of birth control while being treated, and also take regular pregnancy tests. The pills are also dispensed in blister packs rather than pill bottles, so that they can't be confused with other medication or easily put into an unlabeled container. The pills themselves in most cases literally have a picture of a pregnant silhouette crossed out they're printed on the pill. No more than four weeks of doses are dispensed at a time, and there are no automatic refills. Unused doses are supposed to be returned rather than discarded, and there's just a lot of follow up and monitoring of patients regardless of their sex. And this is the standard in the US. So in order to be treated with solidamide, a person has to give up a degree of bodily autonomy just to comply with all these regulations. That has led to a whole discussion of medical ethics and what it means for patients to essentially just be reduced to being viewed in terms of their capacity to have children and how to control that capacity, as well as what it means for a disabled person to be reframed as a problem that should be prevented. Yeah, we've we've talked on the show at various points about disability rights and about the evolving view of not thinking of disability as like a bad thing that needs to be fixed, but instead thinking of society is something that needs to change to be accessible to everyone. The the litamide survivors community has been pretty vocal about the fact that in their view, this is something that happened to them that should not have happened to them and should not happen to anybody else. So it's a little bit different nuance than some of the other disability rights things that we have talked about. And then also, like we said back in part one of this episode, these steps don't necessarily prevent every exposure. Hanson's disease is really prevalent in Brazil, and the litamide was re licensed in Brazil for that reason. In n there have been people born with feetle the litamide syndrome in Brazil than including in very recent years. After examining the birth records of seventeen point five million people born between two thousand five and about one hundred were found to have health conditions and disabilities that are consistent with fetal the litamide syndrome. Brazil has similar regulations for dispensing the litamide compared to what the US does, But the parts of Brazil where hands and disease is the most prevalent are also the parts where the medical system is the least robust, and I mean it would not surprise me at all that if there are other countries where the litamide has been reintroduced that have a similar situation, but Brazil is where the most research has been done. So that's the litamide not a story that is confined to the past, as folks may imagine it from seeing things like Call the Midwife, which um that plot arc on Call the Midwife plays out over a long time in terms of episodes, because it has a very similar trajectory to what we talked about in Part one, between somebody having morning sickness being given this drug because it's been sort of a wonder drug for treating morning sickness, to then eventually much later making the connection between that drug and people being born with this range of disabilities. Tracy d have a bit of listener mail to wrap this one up. I do. This is from Emily. Emily says, Hi, Holly and Tracy. I'm excited to finally have something to contribute for listener mail. I was born and raised in Conquered, California and have driven through the Conquered Naval Weapons Station and on the Port Chicago Highway for a long time, but I didn't learn about the disaster until my twenties. For people that would like to know more but can't visit the port itself, there's another place to visit. There's an exhibit about the disaster at the Rosie the Riveter World War Two home Front National Historic Park Visitors Center in Richmond, California. This is where I first learned about the event, along with a lot of other amazing stories about the people who fought the war from home and how wartime shaped the Bay Area. The museum is at the site of the Richmond Shipyards and Fort Assembly Plant. I highly recommend this free museum to anyone who is interested in these topics or as in the area. Thanks for keeping me company through the more monotonous parts of my day, Best Emily. Thank you so much, Emily for this note. If folks have been sort of waiting for a reason to write us, you can write us for any reason. Just say hi. You can send pictures of your pets. We love to hear random things about people's lives, as well as emails like this that have a cool new information that we didn't know about before. So thank you so much, Emily. Uh If you would like to write to us, we're a history podcast at how Stuff works dot com and then we are all over social media at miss in History. That's where you will find our Facebook, Interest, Instagram, and Twitter. You can also come to our website, which is missing history dot com, where you will find a searchable archive of all the episodes that we have ever done and show notes for the episodes that Holly and I have done together. Uh and you can subscribe to the show on Apple, podcast, the I heart Radio app, and wherever else you get your podcasts. Stuff you Missed in History Class is a production of I Heart Radio's How Stuff Works. For more podcasts for my heart Radio, visit the heart Radio app, Apple Podcasts, or wherever you listen to your favorite shows.

Welcome to Stuff You missed in History Class, the production of I Heart Radios How Stuff Works. Hello, and welcome to the podcast. I'm Tracy V. Wilson and I'm Holly Fry. Today we are finishing out our two part are on the direct the litamide, which caused serious health problems and multiple disabilities and at least ten thousand people born in the late nineteen fifties and early nineteen sixties, so folks who are in their late fifties and early sixties. Today. We're recording this in twenty nineteen. Last time we talked about the direct itself and how it made it to market and how a crisis unfolded after its release, and today we're going to talk about the response to all of this, including criminal trials, changes the drug laws, and debates about the legality of abortion, and how this has really continued to evolve for the litamide survivors until today. This will probably not make much sense if you have not heard part one. Yeah, you'll be a little in the weeds. Uh. Again, we mentioned at the top of the other one at part one that this is, you know, a little bit more of a serious subject and not always the most comfortable discussion, So keep that in mind. There's still some appalling stuff in the realm of disability rights in terms of how people have been treated that kind of thing as well. So after thelidamide was withdrawn from the market, authorities started reviewing the case histories of people who were affected by the drug, including children born with fetal pilidamide syndrome and their parents, and adults who had developed permanent neuropathy and other nerve disorders. After six years of review, the bill of indictment that was delivered was nearly one thousand pages long. Ultimately, charges were brought against nine men who worked at Shami grunenthalogy mb H, which was the pharmaceutical company that had developed the litamide. This included owner and founder Herman Vertz, senior chief scientist Dr Heinrich Muchter, and seven other men. They were charged with involuntary manslaughter and intent to commit bodily harm, and their trial began on May seven, nineteen sixty eight. Criminal proceedings went on until nineteen seventy, with a panel of five judges hearing hundreds of hours of testimony from more than three hundred fifty witnesses and receiving tens of thousands of pages of evidence. Throughout it all, Grunenthal maintained that it's safety testing on the litamide had met the requirements of the time and that it could not have known that the drug could disrupt fetal development. But then, after nearly two and a half years, on December eighteenth, nineteen seventy, the panel of judges dismissed the charges. They did this with the approval of the prosecution, and Grunenthal was granted immunity from further criminal prosecution in Germany. At the same time, the company agreed to establish the Countergone Foundation, funded with one hundred million Deutsche marks matched by the West German government. More than two thousand, five hundred families who had pending civil cases were pressured to drop their lawsuits and to accept this settlement. Ins and the years since this happened, there have been many allegations of wrongdoing relating to this trial. In the UK's the Litamide Trust unearthed documents suggesting that there had been a secret, behind the scenes negotiation between Grudenthal, the German federal government and the state government of the state of North Ryan West Failure without any the Litamide survivors or their representatives present. Journalist Harold Evans reported on this through The Guardian and Reuter's. According to these reports, Hermandert Sr. Was at these meetings even though he had been excused from attending the trial for reasons of his health. The documents also suggested that State Minister of Justice Joseph Newbarger, whose department was overseeing the prosecution, had previously been a partner at Grunenthal's law firm. Yet that would be a huge conflict of interest. Meanwhile, Grudenthal's website now today maintains that quote Grunenthal is adamant that there was no secret deal or other politic interference to halt the trial. We are not aware of any evidence justifying these claims. The company's statement goes on to say, quote, the allegedly new documents were in part wrongly dated, and that the relationship between them was wrongly described or distorted by the attorneys. Also, in more recent years, some writers have looked into connections between Grunenthal and members of the Nazi Party. There is a whole conspiracy theory that solidimided was developed prior to or during World War Two and tested in concentration camps that does not appear to be true, but it is true that various people working at Grunenthal did have ties to the Nazi Party, which is frankly also true of a lot of businesses that operated in Germany during and after World War Two. Regardless of whether these claims about the trials are accurate, the end result was the same. The charges against eight Grunenthal employees and its founder owner were dropped, the company was given immunity from prosecution, and the Contragne Foundation was a ablished to provide financial support to families who were affected by the litamide. The foundation's operations are governed by German public law and today it's paying monthly pensions, annual pensions, or one time payments to people in thirty eight countries. Grunenthal has maintained that this settlement was quote widely supported by the parents of the affected children as well as the general public, but many solidamide survivors have said the opposite, Without even getting into the idea of compensation for the emotional pain and grief involved, many pensions just have not been enough to support the basic day to day needs of many people born with fetal solidomide syndrome. Payments from the foundation have been increased that a couple of points since it was first established, and today the maximum is eight thousand, one seventeen euros a month. Grnenthal also added an additional fifty million euros to the fund into and two thousand nine, but today the payments from the foundation are coming from the German government rather than from Grunenthal. There's also a separate Grunenthal Foundation that distributes non cash support, like modifying the litamide survivors bathrooms and vehicles to make them accessible. That eight thousand, seventeen euro number might sound like a lot, but living with fetal the litamide syndrome can be incredibly expensive. Many survivors require round the clock care or assistance, along with multiple surgeries and medications, physical therapy, and devices like powered wheelchairs with customized controls and lifts to move a person to and from the wheelchair. My mom's powered wheelchair cost more than my car. Yeah, that's an industry my husband worked in for a while, and there were some models that I was absolutely mind boggled when I saw the prices on them. Yeah. So, Apart from whether the financial settlement itself is enough money, many survivors have described the process of getting benefits as unnecessarily bureaucratic and difficult. Applicants have to document how they were exposed to the lidamide, including sending their medical records. Applications have to be submitted in German and there's a life certificate showing that the applicant appeared in person. People who don't live in Germany have to travel to a German embassy or consulate, although in some countries there are alternate locations that are like notaries or other other places. That includes in Brazil, Spain, the Netherlands and Great Britain and Ireland. If an applicant is physically unable to leave their home, or if the location where they're supposed to appear in person isn't accessible to people with disabilities, because that is still an issue in a lot of the world, the applicant can submit a certification from their physician. The Linamite survivors and their families have really criticized Grunenthal's actions and responses to all of this, including an apology that the company issued on August thirty one. The apology was delivered at the dedication to a memorial in Stolberg, Germany, and it depicts a sculpture of a young girl with fulk amelia wearing prosthetic legs as well as an empty chair. Yeah, a lot of people felt like Grunenthal did not need to be at that dedication at all, and then at it. Harold F. Stock, the CEO at the time, delivered this apology translated into English. It's said, in part, quote, Grunenthal has acted in accordance with the state of scientific knowledge and all industry standards for testing new drugs that were relevant and acknowledged in the nineteen fifties and sixties. We regret that the tar atogenic potential of the litamide could not be detected by the tests that we and others carried out before it was marketed. The statement later went on to say, quote, we also apologized for the fact that we have not found a way to you from person to person for almost fifty years. Instead, we have been silent, and we are very sorry for that. We asked that you regard our long silence as a sign of the silent shock that your fate has caused us. We have learned how important it is that we engage in an open dialogue with those affected and to talk and to listen to them. We have begun to mutually develop and implement projects with them to improve their living situation and assist in hardship situations easily and efficiently. We will continue to pursue this path in the future. Overwhelmingly, the lidamiters and their families did not find this sufficient. Parts of it definitely read as though they are saying, we're sorry, but it wasn't our fault. Exactly. If you go and read their f a Q and their website, there are a lot of things on it that kind of make you go, you didn't really answer that question, and also you're still saying it wasn't your fault. The immunity that was granted to Grunenthal when these charges were dismissed in nineteen seventy only applies in Germany. So there have been other court cases and civil suits in multiple other countries, both against the pharmaceutical companies that distributed the litamide in those countries and the governments that allowed them to do it, just as examples the UK, the Litamide Trust was established as the Litamide Children Trust in nine seventy three following a settlement between the Stiller's Company Limited in four nine disabled children who had been exposed to the litamide in Canada, A lawsuit against the litamides distributor there led to cash settlements and the establishment of a federal fund. The result of all of this is kind of a patchwork of programs and benefits that really vary from one country to another, with some paying benefits only if the applicant isn't getting support from somewhere else. Many programs also require documentation of the litamite exposure, which in some cases is simply not possible. One of the things we talked about is that sometimes people would share their medications with someone else, probably not any documentation there. Um. In the minds of many survivors, it also shouldn't be necessary since outside of the context of the litamite exposure, these patterns of disability are incredibly rare. Yeah, It's like there's sort of a choice between possibly paying benefit to somebody who has a similar disability that wasn't caused by the litamide, which is incredibly rare, or requiring all the litamide survivors to go through this huge rigmarole and a lot of effort to get basic support for day to day needs. Um. I didn't really write it in this outline, But there have also been some countries that have issued formal apologies or have talked about issuing formal apologies for not regulating the companies that were distributing the litamide more carefully before and during this whole crisis. So all of this is really really still ongoing. A financial support package known as the Canadian the Litomized Survivors Support Program or ct SSP, was announced on January ninth, twenty nineteen, so just this year, with an application period running until June. That follows on to earlier programs from and this is intended in part to allow survivors who were previously turned down for a lack of documentation to reapply, and it's ongoing in another sense as well. The solidamide survivors who were born in the nineteen fifties and sixties are in their late fifties and early sixties now. Numerous surveys of survivors in various countries have reported that their general health and quality of life are decreasing as they age. To quote from the result of a survey conducted in the UK, quote, as the litamide survivors reach their mid fifties, they are experiencing a wide range of secondary health problems, in particular muscular skeletal problems and depression and anxiety, with multi morbidity a growing issue. These health problems are having a negative impact on their employment. Two fifths are unable to work and their physical health related quality of life, which is significantly poorer than the general population. Some of this is exacerbated by the fact that many the litamide survivors have compensated for missing or shortened limbs by using their other limbs instead, so for example, using their feet in place of hands, and this means that they're particularly susceptible to overuse injuries, joint issues, and other muscular skeletal problems. This also means that many thalidomie survivors are needing additional care and support while simultaneously reaching retirement age or being unable to work because of their disabilities and health conditions. And many of those who are receiving support from one of the Solidamie survivor funds were evaluated when they were much younger, so they need more now than they did when they were initially approved, and the dollar amounts that they've been granted have not necessarily been adjusted for inflation. Plus some of these funds will only pay for specific types of treatments and services, and not for things that aren't regarded as a medical necessity. But a lot of thelidamide survivors report that what they actually need the most help with is day to day tasks like housekeeping and personal hygiene, which some funds won't cover. Some funds also won't cover things that weren't directly connected to the litamite exposure. So, for example, of fund might pay for prosthetic arms because a person's folk amelia was directly caused by the litamite exposure, but not pay for physical therapy to address an injury that resulted from using feet in place of missing hands. We are going to take a short break before we talk about some of the changes to disability rights, medicine, and the law that followed the the litamide crisis. Back in part one, we talked about how in many parts of the world, the first response to newborns who had been exposed to the litamide was a sense of hopelessness and recommendations that be placed at institutions. Those attitudes started to shift hospitals and other practices that had specialized in fitting patients with prosthetic limbs, a lot of them had initially been focused on veterans of wars turned their attention to making limbs that were suitable for children. Soon specialists were working on a range of limbs that were appropriate for different stages of a child's development, and on new types of press dcs that could work with different types of folk amelia. There's obviously still a long way to go in terms of accessibility and social attitudes about disability, but it was a start. And also, I don't want us to give the impression that every thalidomide survivor uses press decies. It really depends on what an individual person is comfortable with and wants to use and what works for them. Attitudes about congenital conditions and disabilities also started to shift in the wake of the thalidomide crisis. The field of teratology, or the study of malformations during development, was still very new. It's generally noted as being established in the nineteen thirties, and before that point there had not been much research into how a substance or condition could affect development in uteroone. It had been established that some things could negatively affect how a fetus developed, including a lack of vitamin A or vitamin B, or the rubella virus. The general public often thought congenital disabilities or health conditions were brought on by natural forces or were just random, and there were lots of superstitions and religious and spiritual beliefs that were kind of baked into this whole idea and muddied the waters a bit. The The litamide crisis prompted a lot of research into teratology in general, with the first medical journal dedicated to it established in the nineteen sixties. I feel like at timelines of of teratology as a field, a lot of times there's literally a pre the litamide and post the litamide era in the timeline. Researchers started studying which drugs can pass through the placenta and what allows them to do that while other drugs can't. And then there have also been hundreds of studies into the litamides specifically over the decades. It's only been in the last couple of decades that researchers have started to figure out exactly what causes the litamides teratogenic effects without getting too deep into chemistry, because there are about ten different terms involved. That we would have to define. This solidimide molecule exists into configurations which are essentially mirror images of each other. The one known as the R configuration acts as a sedative, the one known as the S configuration is a tarata gym, and the R configuration can be converted into the S configuration within the human body. So even if drug manufacturers made a very pure version that only included the R type of the drug, it's still would not be safe during pregnancy. Research is still ongoing into exactly how the S configuration disrupts fetal development. I found five different headlines spanning more than a decade that each claimed that researchers had finally figured it out. This is a thing that's building and discovering new elements of figuring it out. The most recent of these came from Dana Farwork Cancer Institute in August of eight teams, so just last year, according to the press really ease quote. Building on years of previous research, the researchers found that the litamide acts by promoting the degradation of an unexpectedly wide range of transcription factors cell proteins that helped switch teams on or off, including one called SAL four. The result is the complete removal of SAL four from cells. Aside from these shifts in public awareness and attitudes and the huge growth of a huge field of medical research, no single drug has had a bigger impact on pharmaceutical regulations than the litamine. In much of the world, the pharmaceutical industry was really growing without a lot of regulations in place in the nineteen fifties and nineteen sixties. In May of nineteen sixty three, British Minister of Health Kenneth Robinson said, quote, the House and the public suddenly woke up to the fact that any drug manufacturer could mark any product, however inadequately tested, however dangerous, without having to satisfy any independent body as to its efficacy and safety. And the public was almost uniquely unprotected in this respect. So these new laws, and I mean they are really all over the world, set much more specific standards into how drugs had to be tested, including animal testing meant to confirm whether a drug is safe during pregnancy before it's tested on or administered to humans. In places where abortion was illegal, the palidomide crisis also became part of debates about legalizing it or adding additional exceptions to the existing law. In the US, for example, abortion was a felony, and usually the only exception was if the mother's life was at risk. Along with a rubella epidemic that was happening at roughly the same time, the palidomide crisis led to discussions about whether the law should be expanded to include exceptions for pregnancies in which the baby would not be able to survive after being born, and there were also people who used the crisis to support a eugenics argument in the context of abortion, either to support the idea of allowing abortion for eugenic purposes or to advocate for keeping abortion illegal because of its potential use for eugenics. This became national news in nineteen sixty two. Sherry Chessen was the host of Arizona's locally syndicated version of the children's TV show Romper Room. Her husband had brought some medication home with him from a trip to London, and she had taken some of it early in her pregnancy with their fifth child. Later, she read an article about Dr Francis Oldham Kelsey's work to prevent the litamite distribution in the United States, and she realized that it was the same drug that her husband had brought home with him. Chessen talked to her doctor, who contacted doctors in Europe and then recommended that she terminate her pregnancy. Chessen later described this decision as absolutely agonizing, and she was also afraid that the same thing might happen to other women, so she told her story to the Arizona Republic under the understanding that her identity would be kept confidential. Chessen's name became public after the hospital ultimately turned down her request for an exception and her attorney filed suit on her behalf. She lost her job, she got hate mail and death threats, including threats to her other children. Chested and her husband ultimately had to travel to Sweden, where abortion was legal, to terminate the pregnancy. Although it's no longer manufactured or distributed by Grudenthal, the litamide has been reintroduced in several parts of the world in the years since it was banned. That's something that we're going to talk about in just a moment. And as different regulatory agencies have tried to figure out how to minimize the risk to developing fetuses, abortion has continued to be part of this conversation, and that conversation has also included the litamide survivors themselves. During advisory committee meetings related to the reintroduction of the litamide, Randolph Warren, the founder of the Lidamide Victims Association of Canada, stressed the need to consider the possibility of abortion in this context, saying, quote, people should not be forced to sign anything that would force them to have an abortion should a the litami be born, because we have some quality of life and some right to be here. A lot of these questions about the lidamide and abortion in general are still ongoing in many parts of the world today, and we're going to talk about the reintroduction of the lita mine after we take another sponsor break. It wasn't long at all after the litamides worldwide ban that doctors began discovering that it could have medical use as an adult patients beyond being a sedative. In nineteen sixty four, so just two years later, doctors at a hospital in Jerusalem gave the lidamide to a patient who had advanced Hanson's disease, which is also known as leprosy. This patient was in very severe pain and could not rest, so a doctor administered some the litamide that he had on hand, basically as a last resort. This doctor, j GB chess Can, realized that that the litamide also treated some of the diseases symptoms beyond just being a sedative. The World Health Organization conducted a clinical trial of solidamide as a Hanson's disease treatment in nineteen sixty seven. Today, it's used in some places to treat your thema a dosum laprosum or e n L, which is a complication that causes painful nodules, high fever, and inflammation. The litamide is approved for treating E n L in some parts of the world, but the World Health Organization does not recommend it because of its teratogenic effects and because there are other drugs that can treat E n L. Yeah. Even though today hanson disease can be treated with a very long course of multiple antibiotics, this complication can happen during the process or even afterwards. So even though Hanson's disease is more treatable than it used to be, this particular complication still does happen for people. Since then, the litamide has also been discovered to be effective against a number of other serious diseases and conditions and complications, including AIDS, wasting syndrome, and multiple miloma. Because it can inhibit the growth of blood vessels, it's also effective and cutting off the blood supply to certain cancers. This has of course been an incredibly difficult and sensitive topic amongst the litamide survivors in their families. In the words of Randolph Warren from an article in f DA Consumer in two thousand one, quote, we will never accept a world with solidamide in it. However, we are forced to prefer licensing of the drugs that disabled us for compassionate reasons and to prevent uncontrolled access to the drug. Yeah. I mean, no group of people is a monolith. People all have their own opinions. But as a group, the litamide survivors in general have been like, we're not going to try to stop you from keeping people who need this drug from having it, but we have got to protect people. So, for example, when the US was trying to set standards for prescribing the litamide for multiple mileoma and hands and disease, Warren and the the Linamide Victims Association of Canada were part of that process, including attending advisory committee meetings with the Food and Drag Administration in the National Institutes of Health. The result from all these meetings was the system for the Lidomide Education and Prescribing Safety Program known as STEPS, which is now called Risk Evaluation and Mediation Strategy or REMS. REMS is very involved, providers have to be certified, and distribution of the drug is highly restricted. Patients who could become pregnant are counseled on the risks of the drug. Along with contraception and emergency contraception. The litamide can also be present in siemens, so male patients whose partners could become pregnant are required to use condoms even if they have had a vasectomy or if their partners are using contraceptives, and this is really just the beginning. Patients who could become pregnant are required to have two negative pregnancy tests before starting treatment. They must use two forms of birth control while being treated, and also take regular pregnancy tests. The pills are also dispensed in blister packs rather than pill bottles, so that they can't be confused with other medication or easily put into an unlabeled container. The pills themselves in most cases literally have a picture of a pregnant silhouette crossed out they're printed on the pill. No more than four weeks of doses are dispensed at a time, and there are no automatic refills. Unused doses are supposed to be returned rather than discarded, and there's just a lot of follow up and monitoring of patients regardless of their sex. And this is the standard in the US. So in order to be treated with solidamide, a person has to give up a degree of bodily autonomy just to comply with all these regulations. That has led to a whole discussion of medical ethics and what it means for patients to essentially just be reduced to being viewed in terms of their capacity to have children and how to control that capacity, as well as what it means for a disabled person to be reframed as a problem that should be prevented. Yeah, we've we've talked on the show at various points about disability rights and about the evolving view of not thinking of disability as like a bad thing that needs to be fixed, but instead thinking of society is something that needs to change to be accessible to everyone. The the litamide survivors community has been pretty vocal about the fact that in their view, this is something that happened to them that should not have happened to them and should not happen to anybody else. So it's a little bit different nuance than some of the other disability rights things that we have talked about. And then also, like we said back in part one of this episode, these steps don't necessarily prevent every exposure. Hanson's disease is really prevalent in Brazil, and the litamide was re licensed in Brazil for that reason. In n there have been people born with feetle the litamide syndrome in Brazil than including in very recent years. After examining the birth records of seventeen point five million people born between two thousand five and about one hundred were found to have health conditions and disabilities that are consistent with fetal the litamide syndrome. Brazil has similar regulations for dispensing the litamide compared to what the US does, But the parts of Brazil where hands and disease is the most prevalent are also the parts where the medical system is the least robust, and I mean it would not surprise me at all that if there are other countries where the litamide has been reintroduced that have a similar situation, but Brazil is where the most research has been done. So that's the litamide not a story that is confined to the past, as folks may imagine it from seeing things like Call the Midwife, which um that plot arc on Call the Midwife plays out over a long time in terms of episodes, because it has a very similar trajectory to what we talked about in Part one, between somebody having morning sickness being given this drug because it's been sort of a wonder drug for treating morning sickness, to then eventually much later making the connection between that drug and people being born with this range of disabilities. Tracy d have a bit of listener mail to wrap this one up. I do. This is from Emily. Emily says, Hi, Holly and Tracy. I'm excited to finally have something to contribute for listener mail. I was born and raised in Conquered, California and have driven through the Conquered Naval Weapons Station and on the Port Chicago Highway for a long time, but I didn't learn about the disaster until my twenties. For people that would like to know more but can't visit the port itself, there's another place to visit. There's an exhibit about the disaster at the Rosie the Riveter World War Two home Front National Historic Park Visitors Center in Richmond, California. This is where I first learned about the event, along with a lot of other amazing stories about the people who fought the war from home and how wartime shaped the Bay Area. The museum is at the site of the Richmond Shipyards and Fort Assembly Plant. I highly recommend this free museum to anyone who is interested in these topics or as in the area. Thanks for keeping me company through the more monotonous parts of my day, Best Emily. Thank you so much, Emily for this note. If folks have been sort of waiting for a reason to write us, you can write us for any reason. Just say hi. You can send pictures of your pets. We love to hear random things about people's lives, as well as emails like this that have a cool new information that we didn't know about before. So thank you so much, Emily. Uh If you would like to write to us, we're a history podcast at how Stuff works dot com and then we are all over social media at miss in History. That's where you will find our Facebook, Interest, Instagram, and Twitter. You can also come to our website, which is missing history dot com, where you will find a searchable archive of all the episodes that we have ever done and show notes for the episodes that Holly and I have done together. Uh and you can subscribe to the show on Apple, podcast, the I heart Radio app, and wherever else you get your podcasts. Stuff you Missed in History Class is a production of I Heart Radio's How Stuff Works. For more podcasts for my heart Radio, visit the heart Radio app, Apple Podcasts, or wherever you listen to your favorite shows.