Speaker 1: Welcome to Stuff You missed in History Class, the production
Speaker 1: of I Heart Radios How Stuff Works. Hello, and welcome
Speaker 1: to the podcast. I'm Tracy V. Wilson and I'm Holly Fry.
Speaker 1: Today we are finishing out our two part are on
Speaker 1: the direct the litamide, which caused serious health problems and
Speaker 1: multiple disabilities and at least ten thousand people born in
Speaker 1: the late nineteen fifties and early nineteen sixties, so folks
Speaker 1: who are in their late fifties and early sixties. Today.
Speaker 1: We're recording this in twenty nineteen. Last time we talked
Speaker 1: about the direct itself and how it made it to
Speaker 1: market and how a crisis unfolded after its release, and
Speaker 1: today we're going to talk about the response to all
Speaker 1: of this, including criminal trials, changes the drug laws, and
Speaker 1: debates about the legality of abortion, and how this has
Speaker 1: really continued to evolve for the litamide survivors until today.
Speaker 1: This will probably not make much sense if you have
Speaker 1: not heard part one. Yeah, you'll be a little in
Speaker 1: the weeds. Uh. Again, we mentioned at the top of
Speaker 1: the other one at part one that this is, you know,
Speaker 1: a little bit more of a serious subject and not
Speaker 1: always the most comfortable discussion, So keep that in mind.
Speaker 1: There's still some appalling stuff in the realm of disability
Speaker 1: rights in terms of how people have been treated that
Speaker 1: kind of thing as well. So after thelidamide was withdrawn
Speaker 1: from the market, authorities started reviewing the case histories of
Speaker 1: people who were affected by the drug, including children born
Speaker 1: with fetal pilidamide syndrome and their parents, and adults who
Speaker 1: had developed permanent neuropathy and other nerve disorders. After six
Speaker 1: years of review, the bill of indictment that was delivered
Speaker 1: was nearly one thousand pages long. Ultimately, charges were brought
Speaker 1: against nine men who worked at Shami grunenthalogy mb H,
Speaker 1: which was the pharmaceutical company that had developed the litamide.
Speaker 1: This included owner and founder Herman Vertz, senior chief scientist
Speaker 1: Dr Heinrich Muchter, and seven other men. They were charged
Speaker 1: with involuntary manslaughter and intent to commit bodily harm, and
Speaker 1: their trial began on May seven, nineteen sixty eight. Criminal
Speaker 1: proceedings went on until nineteen seventy, with a panel of
Speaker 1: five judges hearing hundreds of hours of testimony from more
Speaker 1: than three hundred fifty witnesses and receiving tens of thousands
Speaker 1: of pages of evidence. Throughout it all, Grunenthal maintained that
Speaker 1: it's safety testing on the litamide had met the requirements
Speaker 1: of the time and that it could not have known
Speaker 1: that the drug could disrupt fetal development. But then, after
Speaker 1: nearly two and a half years, on December eighteenth, nineteen seventy,
Speaker 1: the panel of judges dismissed the charges. They did this
Speaker 1: with the approval of the prosecution, and Grunenthal was granted
Speaker 1: immunity from further criminal prosecution in Germany. At the same time,
Speaker 1: the company agreed to establish the Countergone Foundation, funded with
Speaker 1: one hundred million Deutsche marks matched by the West German government.
Speaker 1: More than two thousand, five hundred families who had pending
Speaker 1: civil cases were pressured to drop their lawsuits and to
Speaker 1: accept this settlement. Ins and the years since this happened,
Speaker 1: there have been many allegations of wrongdoing relating to this trial.
Speaker 1: In the UK's the Litamide Trust unearthed documents suggesting that
Speaker 1: there had been a secret, behind the scenes negotiation between Grudenthal,
Speaker 1: the German federal government and the state government of the
Speaker 1: state of North Ryan West Failure without any the Litamide
Speaker 1: survivors or their representatives present. Journalist Harold Evans reported on
Speaker 1: this through The Guardian and Reuter's. According to these reports,
Speaker 1: Hermandert Sr. Was at these meetings even though he had
Speaker 1: been excused from attending the trial for reasons of his health.
Speaker 1: The documents also suggested that State Minister of Justice Joseph Newbarger,
Speaker 1: whose department was overseeing the prosecution, had previously been a
Speaker 1: partner at Grunenthal's law firm. Yet that would be a
Speaker 1: huge conflict of interest. Meanwhile, Grudenthal's website now today maintains
Speaker 1: that quote Grunenthal is adamant that there was no secret
Speaker 1: deal or other politic interference to halt the trial. We
Speaker 1: are not aware of any evidence justifying these claims. The
Speaker 1: company's statement goes on to say, quote, the allegedly new
Speaker 1: documents were in part wrongly dated, and that the relationship
Speaker 1: between them was wrongly described or distorted by the attorneys. Also,
Speaker 1: in more recent years, some writers have looked into connections
Speaker 1: between Grunenthal and members of the Nazi Party. There is
Speaker 1: a whole conspiracy theory that solidimided was developed prior to
Speaker 1: or during World War Two and tested in concentration camps
Speaker 1: that does not appear to be true, but it is
Speaker 1: true that various people working at Grunenthal did have ties
Speaker 1: to the Nazi Party, which is frankly also true of
Speaker 1: a lot of businesses that operated in Germany during and
Speaker 1: after World War Two. Regardless of whether these claims about
Speaker 1: the trials are accurate, the end result was the same.
Speaker 1: The charges against eight Grunenthal employees and its founder owner
Speaker 1: were dropped, the company was given immunity from prosecution, and
Speaker 1: the Contragne Foundation was a ablished to provide financial support
Speaker 1: to families who were affected by the litamide. The foundation's
Speaker 1: operations are governed by German public law and today it's
Speaker 1: paying monthly pensions, annual pensions, or one time payments to
Speaker 1: people in thirty eight countries. Grunenthal has maintained that this
Speaker 1: settlement was quote widely supported by the parents of the
Speaker 1: affected children as well as the general public, but many
Speaker 1: solidamide survivors have said the opposite, Without even getting into
Speaker 1: the idea of compensation for the emotional pain and grief involved,
Speaker 1: many pensions just have not been enough to support the
Speaker 1: basic day to day needs of many people born with
Speaker 1: fetal solidomide syndrome. Payments from the foundation have been increased
Speaker 1: that a couple of points since it was first established,
Speaker 1: and today the maximum is eight thousand, one seventeen euros
Speaker 1: a month. Grnenthal also added an additional fifty million euros
Speaker 1: to the fund into and two thousand nine, but today
Speaker 1: the payments from the foundation are coming from the German
Speaker 1: government rather than from Grunenthal. There's also a separate Grunenthal
Speaker 1: Foundation that distributes non cash support, like modifying the litamide
Speaker 1: survivors bathrooms and vehicles to make them accessible. That eight thousand,
Speaker 1: seventeen euro number might sound like a lot, but living
Speaker 1: with fetal the litamide syndrome can be incredibly expensive. Many
Speaker 1: survivors require round the clock care or assistance, along with
Speaker 1: multiple surgeries and medications, physical therapy, and devices like powered
Speaker 1: wheelchairs with customized controls and lifts to move a person
Speaker 1: to and from the wheelchair. My mom's powered wheelchair cost
Speaker 1: more than my car. Yeah, that's an industry my husband
Speaker 1: worked in for a while, and there were some models
Speaker 1: that I was absolutely mind boggled when I saw the
Speaker 1: prices on them. Yeah. So, Apart from whether the financial
Speaker 1: settlement itself is enough money, many survivors have described the
Speaker 1: process of getting benefits as unnecessarily bureaucratic and difficult. Applicants
Speaker 1: have to document how they were exposed to the lidamide,
Speaker 1: including sending their medical records. Applications have to be submitted
Speaker 1: in German and there's a life certificate showing that the
Speaker 1: applicant appeared in person. People who don't live in Germany
Speaker 1: have to travel to a German embassy or consulate, although
Speaker 1: in some countries there are alternate locations that are like
Speaker 1: notaries or other other places. That includes in Brazil, Spain,
Speaker 1: the Netherlands and Great Britain and Ireland. If an applicant
Speaker 1: is physically unable to leave their home, or if the
Speaker 1: location where they're supposed to appear in person isn't accessible
Speaker 1: to people with disabilities, because that is still an issue
Speaker 1: in a lot of the world, the applicant can submit
Speaker 1: a certification from their physician. The Linamite survivors and their
Speaker 1: families have really criticized Grunenthal's actions and responses to all
Speaker 1: of this, including an apology that the company issued on
Speaker 1: August thirty one. The apology was delivered at the dedication
Speaker 1: to a memorial in Stolberg, Germany, and it depicts a
Speaker 1: sculpture of a young girl with fulk amelia wearing prosthetic
Speaker 1: legs as well as an empty chair. Yeah, a lot
Speaker 1: of people felt like Grunenthal did not need to be
Speaker 1: at that dedication at all, and then at it. Harold F. Stock,
Speaker 1: the CEO at the time, delivered this apology translated into English.
Speaker 1: It's said, in part, quote, Grunenthal has acted in accordance
Speaker 1: with the state of scientific knowledge and all industry standards
Speaker 1: for testing new drugs that were relevant and acknowledged in
Speaker 1: the nineteen fifties and sixties. We regret that the tar
Speaker 1: atogenic potential of the litamide could not be detected by
Speaker 1: the tests that we and others carried out before it
Speaker 1: was marketed. The statement later went on to say, quote,
Speaker 1: we also apologized for the fact that we have not
Speaker 1: found a way to you from person to person for
Speaker 1: almost fifty years. Instead, we have been silent, and we
Speaker 1: are very sorry for that. We asked that you regard
Speaker 1: our long silence as a sign of the silent shock
Speaker 1: that your fate has caused us. We have learned how
Speaker 1: important it is that we engage in an open dialogue
Speaker 1: with those affected and to talk and to listen to them.
Speaker 1: We have begun to mutually develop and implement projects with
Speaker 1: them to improve their living situation and assist in hardship
Speaker 1: situations easily and efficiently. We will continue to pursue this
Speaker 1: path in the future. Overwhelmingly, the lidamiters and their families
Speaker 1: did not find this sufficient. Parts of it definitely read
Speaker 1: as though they are saying, we're sorry, but it wasn't
Speaker 1: our fault. Exactly. If you go and read their f
Speaker 1: a Q and their website, there are a lot of
Speaker 1: things on it that kind of make you go, you
Speaker 1: didn't really answer that question, and also you're still saying
Speaker 1: it wasn't your fault. The immunity that was granted to
Speaker 1: Grunenthal when these charges were dismissed in nineteen seventy only
Speaker 1: applies in Germany. So there have been other court cases
Speaker 1: and civil suits in multiple other countries, both against the
Speaker 1: pharmaceutical companies that distributed the litamide in those countries and
Speaker 1: the governments that allowed them to do it, just as
Speaker 1: examples the UK, the Litamide Trust was established as the
Speaker 1: Litamide Children Trust in nine seventy three following a settlement
Speaker 1: between the Stiller's Company Limited in four nine disabled children
Speaker 1: who had been exposed to the litamide in Canada, A
Speaker 1: lawsuit against the litamides distributor there led to cash settlements
Speaker 1: and the establishment of a federal fund. The result of
Speaker 1: all of this is kind of a patchwork of programs
Speaker 1: and benefits that really vary from one country to another,
Speaker 1: with some paying benefits only if the applicant isn't getting
Speaker 1: support from somewhere else. Many programs also require documentation of
Speaker 1: the litamite exposure, which in some cases is simply not possible.
Speaker 1: One of the things we talked about is that sometimes
Speaker 1: people would share their medications with someone else, probably not
Speaker 1: any documentation there. Um. In the minds of many survivors,
Speaker 1: it also shouldn't be necessary since outside of the context
Speaker 1: of the litamite exposure, these patterns of disability are incredibly rare. Yeah,
Speaker 1: It's like there's sort of a choice between possibly paying
Speaker 1: benefit to somebody who has a similar disability that wasn't
Speaker 1: caused by the litamide, which is incredibly rare, or requiring
Speaker 1: all the litamide survivors to go through this huge rigmarole
Speaker 1: and a lot of effort to get basic support for
Speaker 1: day to day needs. Um. I didn't really write it
Speaker 1: in this outline, But there have also been some countries
Speaker 1: that have issued formal apologies or have talked about issuing
Speaker 1: formal apologies for not regulating the companies that were distributing
Speaker 1: the litamide more carefully before and during this whole crisis.
Speaker 1: So all of this is really really still ongoing. A
Speaker 1: financial support package known as the Canadian the Litomized Survivors
Speaker 1: Support Program or ct SSP, was announced on January ninth,
Speaker 1: twenty nineteen, so just this year, with an application period
Speaker 1: running until June. That follows on to earlier programs from
Speaker 1: and this is intended in part to allow survivors who
Speaker 1: were previously turned down for a lack of documentation to reapply,
Speaker 1: and it's ongoing in another sense as well. The solidamide
Speaker 1: survivors who were born in the nineteen fifties and sixties
Speaker 1: are in their late fifties and early sixties now. Numerous
Speaker 1: surveys of survivors in various countries have reported that their
Speaker 1: general health and quality of life are decreasing as they age.
Speaker 1: To quote from the result of a survey conducted in
Speaker 1: the UK, quote, as the litamide survivors reach their mid fifties,
Speaker 1: they are experiencing a wide range of secondary health problems,
Speaker 1: in particular muscular skeletal problems and depression and anxiety, with
Speaker 1: multi morbidity a growing issue. These health problems are having
Speaker 1: a negative impact on their employment. Two fifths are unable
Speaker 1: to work and their physical health related quality of life,
Speaker 1: which is significantly poorer than the general population. Some of
Speaker 1: this is exacerbated by the fact that many the litamide
Speaker 1: survivors have compensated for missing or shortened limbs by using
Speaker 1: their other limbs instead, so for example, using their feet
Speaker 1: in place of hands, and this means that they're particularly
Speaker 1: susceptible to overuse injuries, joint issues, and other muscular skeletal problems.
Speaker 1: This also means that many thalidomie survivors are needing additional
Speaker 1: care and support while simultaneously reaching retirement age or being
Speaker 1: unable to work because of their disabilities and health conditions.
Speaker 1: And many of those who are receiving support from one
Speaker 1: of the Solidamie survivor funds were evaluated when they were
Speaker 1: much younger, so they need more now than they did
Speaker 1: when they were initially approved, and the dollar amounts that
Speaker 1: they've been granted have not necessarily been adjusted for inflation.
Speaker 1: Plus some of these funds will only pay for specific
Speaker 1: types of treatments and services, and not for things that
Speaker 1: aren't regarded as a medical necessity. But a lot of
Speaker 1: thelidamide survivors report that what they actually need the most
Speaker 1: help with is day to day tasks like housekeeping and
Speaker 1: personal hygiene, which some funds won't cover. Some funds also
Speaker 1: won't cover things that weren't directly connected to the litamite exposure. So,
Speaker 1: for example, of fund might pay for prosthetic arms because
Speaker 1: a person's folk amelia was directly caused by the litamite exposure,
Speaker 1: but not pay for physical therapy to address an injury
Speaker 1: that resulted from using feet in place of missing hands.
Speaker 1: We are going to take a short break before we
Speaker 1: talk about some of the changes to disability rights, medicine,
Speaker 1: and the law that followed the the litamide crisis. Back
Speaker 1: in part one, we talked about how in many parts
Speaker 1: of the world, the first response to newborns who had
Speaker 1: been exposed to the litamide was a sense of hopelessness
Speaker 1: and recommendations that be placed at institutions. Those attitudes started
Speaker 1: to shift hospitals and other practices that had specialized in
Speaker 1: fitting patients with prosthetic limbs, a lot of them had
Speaker 1: initially been focused on veterans of wars turned their attention
Speaker 1: to making limbs that were suitable for children. Soon specialists
Speaker 1: were working on a range of limbs that were appropriate
Speaker 1: for different stages of a child's development, and on new
Speaker 1: types of press dcs that could work with different types
Speaker 1: of folk amelia. There's obviously still a long way to
Speaker 1: go in terms of accessibility and social attitudes about disability,
Speaker 1: but it was a start. And also, I don't want
Speaker 1: us to give the impression that every thalidomide survivor uses
Speaker 1: press decies. It really depends on what an individual person
Speaker 1: is comfortable with and wants to use and what works
Speaker 1: for them. Attitudes about congenital conditions and disabilities also started
Speaker 1: to shift in the wake of the thalidomide crisis. The
Speaker 1: field of teratology, or the study of malformations during development,
Speaker 1: was still very new. It's generally noted as being established
Speaker 1: in the nineteen thirties, and before that point there had
Speaker 1: not been much research into how a substance or condition
Speaker 1: could affect development in uteroone. It had been established that
Speaker 1: some things could negatively affect how a fetus developed, including
Speaker 1: a lack of vitamin A or vitamin B, or the
Speaker 1: rubella virus. The general public often thought congenital disabilities or
Speaker 1: health conditions were brought on by natural forces or were
Speaker 1: just random, and there were lots of superstitions and religious
Speaker 1: and spiritual beliefs that were kind of baked into this
Speaker 1: whole idea and muddied the waters a bit. The The
Speaker 1: litamide crisis prompted a lot of research into teratology in general,
Speaker 1: with the first medical journal dedicated to it established in
Speaker 1: the nineteen sixties. I feel like at timelines of of
Speaker 1: teratology as a field, a lot of times there's literally
Speaker 1: a pre the litamide and post the litamide era in
Speaker 1: the timeline. Researchers started studying which drugs can pass through
Speaker 1: the placenta and what allows them to do that while
Speaker 1: other drugs can't. And then there have also been hundreds
Speaker 1: of studies into the litamides specifically over the decades. It's
Speaker 1: only been in the last couple of decades that researchers
Speaker 1: have started to figure out exactly what causes the litamides
Speaker 1: teratogenic effects without getting too deep into chemistry, because there
Speaker 1: are about ten different terms involved. That we would have
Speaker 1: to define. This solidimide molecule exists into configurations which are
Speaker 1: essentially mirror images of each other. The one known as
Speaker 1: the R configuration acts as a sedative, the one known
Speaker 1: as the S configuration is a tarata gym, and the
Speaker 1: R configuration can be converted into the S configuration within
Speaker 1: the human body. So even if drug manufacturers made a
Speaker 1: very pure version that only included the R type of
Speaker 1: the drug, it's still would not be safe during pregnancy.
Speaker 1: Research is still ongoing into exactly how the S configuration
Speaker 1: disrupts fetal development. I found five different headlines spanning more
Speaker 1: than a decade that each claimed that researchers had finally
Speaker 1: figured it out. This is a thing that's building and
Speaker 1: discovering new elements of figuring it out. The most recent
Speaker 1: of these came from Dana Farwork Cancer Institute in August
Speaker 1: of eight teams, so just last year, according to the
Speaker 1: press really ease quote. Building on years of previous research,
Speaker 1: the researchers found that the litamide acts by promoting the
Speaker 1: degradation of an unexpectedly wide range of transcription factors cell
Speaker 1: proteins that helped switch teams on or off, including one
Speaker 1: called SAL four. The result is the complete removal of
Speaker 1: SAL four from cells. Aside from these shifts in public
Speaker 1: awareness and attitudes and the huge growth of a huge
Speaker 1: field of medical research, no single drug has had a
Speaker 1: bigger impact on pharmaceutical regulations than the litamine. In much
Speaker 1: of the world, the pharmaceutical industry was really growing without
Speaker 1: a lot of regulations in place in the nineteen fifties
Speaker 1: and nineteen sixties. In May of nineteen sixty three, British
Speaker 1: Minister of Health Kenneth Robinson said, quote, the House and
Speaker 1: the public suddenly woke up to the fact that any
Speaker 1: drug manufacturer could mark any product, however inadequately tested, however dangerous,
Speaker 1: without having to satisfy any independent body as to its
Speaker 1: efficacy and safety. And the public was almost uniquely unprotected
Speaker 1: in this respect. So these new laws, and I mean
Speaker 1: they are really all over the world, set much more
Speaker 1: specific standards into how drugs had to be tested, including
Speaker 1: animal testing meant to confirm whether a drug is safe
Speaker 1: during pregnancy before it's tested on or administered to humans.
Speaker 1: In places where abortion was illegal, the palidomide crisis also
Speaker 1: became part of debates about legalizing it or adding additional
Speaker 1: exceptions to the existing law. In the US, for example,
Speaker 1: abortion was a felony, and usually the only exception was
Speaker 1: if the mother's life was at risk. Along with a
Speaker 1: rubella epidemic that was happening at roughly the same time,
Speaker 1: the palidomide crisis led to discussions about whether the law
Speaker 1: should be expanded to include exceptions for pregnancies in which
Speaker 1: the baby would not be able to survive after being born,
Speaker 1: and there were also people who used the crisis to
Speaker 1: support a eugenics argument in the context of abortion, either
Speaker 1: to support the idea of allowing abortion for eugenic purposes
Speaker 1: or to advocate for keeping abortion illegal because of its
Speaker 1: potential use for eugenics. This became national news in nineteen
Speaker 1: sixty two. Sherry Chessen was the host of Arizona's locally
Speaker 1: syndicated version of the children's TV show Romper Room. Her
Speaker 1: husband had brought some medication home with him from a
Speaker 1: trip to London, and she had taken some of it
Speaker 1: early in her pregnancy with their fifth child. Later, she
Speaker 1: read an article about Dr Francis Oldham Kelsey's work to
Speaker 1: prevent the litamite distribution in the United States, and she
Speaker 1: realized that it was the same drug that her husband
Speaker 1: had brought home with him. Chessen talked to her doctor,
Speaker 1: who contacted doctors in Europe and then recommended that she
Speaker 1: terminate her pregnancy. Chessen later described this decision as absolutely agonizing,
Speaker 1: and she was also afraid that the same thing might
Speaker 1: happen to other women, so she told her story to
Speaker 1: the Arizona Republic under the understanding that her identity would
Speaker 1: be kept confidential. Chessen's name became public after the hospital
Speaker 1: ultimately turned down her request for an exception and her
Speaker 1: attorney filed suit on her behalf. She lost her job,
Speaker 1: she got hate mail and death threats, including threats to
Speaker 1: her other children. Chested and her husband ultimately had to
Speaker 1: travel to Sweden, where abortion was legal, to terminate the pregnancy.
Speaker 1: Although it's no longer manufactured or distributed by Grudenthal, the
Speaker 1: litamide has been reintroduced in several parts of the world
Speaker 1: in the years since it was banned. That's something that
Speaker 1: we're going to talk about in just a moment. And
Speaker 1: as different regulatory agencies have tried to figure out how
Speaker 1: to minimize the risk to developing fetuses, abortion has continued
Speaker 1: to be part of this conversation, and that conversation has
Speaker 1: also included the litamide survivors themselves. During advisory committee meetings
Speaker 1: related to the reintroduction of the litamide, Randolph Warren, the
Speaker 1: founder of the Lidamide Victims Association of Canada, stressed the
Speaker 1: need to consider the possibility of abortion in this context, saying, quote,
Speaker 1: people should not be forced to sign anything that would
Speaker 1: force them to have an abortion should a the litami
Speaker 1: be born, because we have some quality of life and
Speaker 1: some right to be here. A lot of these questions
Speaker 1: about the lidamide and abortion in general are still ongoing
Speaker 1: in many parts of the world today, and we're going
Speaker 1: to talk about the reintroduction of the lita mine after
Speaker 1: we take another sponsor break. It wasn't long at all
Speaker 1: after the litamides worldwide ban that doctors began discovering that
Speaker 1: it could have medical use as an adult patients beyond
Speaker 1: being a sedative. In nineteen sixty four, so just two
Speaker 1: years later, doctors at a hospital in Jerusalem gave the
Speaker 1: lidamide to a patient who had advanced Hanson's disease, which
Speaker 1: is also known as leprosy. This patient was in very
Speaker 1: severe pain and could not rest, so a doctor administered
Speaker 1: some the litamide that he had on hand, basically as
Speaker 1: a last resort. This doctor, j GB chess Can, realized
Speaker 1: that that the litamide also treated some of the diseases
Speaker 1: symptoms beyond just being a sedative. The World Health Organization
Speaker 1: conducted a clinical trial of solidamide as a Hanson's disease
Speaker 1: treatment in nineteen sixty seven. Today, it's used in some
Speaker 1: places to treat your thema a dosum laprosum or e
Speaker 1: n L, which is a complication that causes painful nodules,
Speaker 1: high fever, and inflammation. The litamide is approved for treating
Speaker 1: E n L in some parts of the world, but
Speaker 1: the World Health Organization does not recommend it because of
Speaker 1: its teratogenic effects and because there are other drugs that
Speaker 1: can treat E n L. Yeah. Even though today hanson
Speaker 1: disease can be treated with a very long course of
Speaker 1: multiple antibiotics, this complication can happen during the process or
Speaker 1: even afterwards. So even though Hanson's disease is more treatable
Speaker 1: than it used to be, this particular complication still does
Speaker 1: happen for people. Since then, the litamide has also been
Speaker 1: discovered to be effective against a number of other serious
Speaker 1: diseases and conditions and complications, including AIDS, wasting syndrome, and
Speaker 1: multiple miloma. Because it can inhibit the growth of blood vessels,
Speaker 1: it's also effective and cutting off the blood supply to
Speaker 1: certain cancers. This has of course been an incredibly difficult
Speaker 1: and sensitive topic amongst the litamide survivors in their families.
Speaker 1: In the words of Randolph Warren from an article in
Speaker 1: f DA Consumer in two thousand one, quote, we will
Speaker 1: never accept a world with solidamide in it. However, we
Speaker 1: are forced to prefer licensing of the drugs that disabled
Speaker 1: us for compassionate reasons and to prevent uncontrolled access to
Speaker 1: the drug. Yeah. I mean, no group of people is
Speaker 1: a monolith. People all have their own opinions. But as
Speaker 1: a group, the litamide survivors in general have been like,
Speaker 1: we're not going to try to stop you from keeping
Speaker 1: people who need this drug from having it, but we
Speaker 1: have got to protect people. So, for example, when the
Speaker 1: US was trying to set standards for prescribing the litamide
Speaker 1: for multiple mileoma and hands and disease, Warren and the
Speaker 1: the Linamide Victims Association of Canada were part of that process,
Speaker 1: including attending advisory committee meetings with the Food and Drag
Speaker 1: Administration in the National Institutes of Health. The result from
Speaker 1: all these meetings was the system for the Lidomide Education
Speaker 1: and Prescribing Safety Program known as STEPS, which is now
Speaker 1: called Risk Evaluation and Mediation Strategy or REMS. REMS is
Speaker 1: very involved, providers have to be certified, and distribution of
Speaker 1: the drug is highly restricted. Patients who could become pregnant
Speaker 1: are counseled on the risks of the drug. Along with
Speaker 1: contraception and emergency contraception. The litamide can also be present
Speaker 1: in siemens, so male patients whose partners could become pregnant
Speaker 1: are required to use condoms even if they have had
Speaker 1: a vasectomy or if their partners are using contraceptives, and
Speaker 1: this is really just the beginning. Patients who could become
Speaker 1: pregnant are required to have two negative pregnancy tests before
Speaker 1: starting treatment. They must use two forms of birth control
Speaker 1: while being treated, and also take regular pregnancy tests. The
Speaker 1: pills are also dispensed in blister packs rather than pill bottles,
Speaker 1: so that they can't be confused with other medication or
Speaker 1: easily put into an unlabeled container. The pills themselves in
Speaker 1: most cases literally have a picture of a pregnant silhouette
Speaker 1: crossed out they're printed on the pill. No more than
Speaker 1: four weeks of doses are dispensed at a time, and
Speaker 1: there are no automatic refills. Unused doses are supposed to
Speaker 1: be returned rather than discarded, and there's just a lot
Speaker 1: of follow up and monitoring of patients regardless of their sex.
Speaker 1: And this is the standard in the US. So in
Speaker 1: order to be treated with solidamide, a person has to
Speaker 1: give up a degree of bodily autonomy just to comply
Speaker 1: with all these regulations. That has led to a whole
Speaker 1: discussion of medical ethics and what it means for patients
Speaker 1: to essentially just be reduced to being viewed in terms
Speaker 1: of their capacity to have children and how to control
Speaker 1: that capacity, as well as what it means for a
Speaker 1: disabled person to be reframed as a problem that should
Speaker 1: be prevented. Yeah, we've we've talked on the show at
Speaker 1: various points about disability rights and about the evolving view
Speaker 1: of not thinking of disability as like a bad thing
Speaker 1: that needs to be fixed, but instead thinking of society
Speaker 1: is something that needs to change to be accessible to everyone.
Speaker 1: The the litamide survivors community has been pretty vocal about
Speaker 1: the fact that in their view, this is something that
Speaker 1: happened to them that should not have happened to them
Speaker 1: and should not happen to anybody else. So it's a
Speaker 1: little bit different nuance than some of the other disability
Speaker 1: rights things that we have talked about. And then also,
Speaker 1: like we said back in part one of this episode,
Speaker 1: these steps don't necessarily prevent every exposure. Hanson's disease is
Speaker 1: really prevalent in Brazil, and the litamide was re licensed
Speaker 1: in Brazil for that reason. In n there have been
Speaker 1: people born with feetle the litamide syndrome in Brazil than
Speaker 1: including in very recent years. After examining the birth records
Speaker 1: of seventeen point five million people born between two thousand
Speaker 1: five and about one hundred were found to have health
Speaker 1: conditions and disabilities that are consistent with fetal the litamide syndrome.
Speaker 1: Brazil has similar regulations for dispensing the litamide compared to
Speaker 1: what the US does, But the parts of Brazil where
Speaker 1: hands and disease is the most prevalent are also the
Speaker 1: parts where the medical system is the least robust, and
Speaker 1: I mean it would not surprise me at all that
Speaker 1: if there are other countries where the litamide has been
Speaker 1: reintroduced that have a similar situation, but Brazil is where
Speaker 1: the most research has been done. So that's the litamide
Speaker 1: not a story that is confined to the past, as
Speaker 1: folks may imagine it from seeing things like Call the Midwife,
Speaker 1: which um that plot arc on Call the Midwife plays
Speaker 1: out over a long time in terms of episodes, because
Speaker 1: it has a very similar trajectory to what we talked
Speaker 1: about in Part one, between somebody having morning sickness being
Speaker 1: given this drug because it's been sort of a wonder
Speaker 1: drug for treating morning sickness, to then eventually much later
Speaker 1: making the connection between that drug and people being born
Speaker 1: with this range of disabilities. Tracy d have a bit
Speaker 1: of listener mail to wrap this one up. I do.
Speaker 1: This is from Emily. Emily says, Hi, Holly and Tracy.
Speaker 1: I'm excited to finally have something to contribute for listener mail.
Speaker 1: I was born and raised in Conquered, California and have
Speaker 1: driven through the Conquered Naval Weapons Station and on the
Speaker 1: Port Chicago Highway for a long time, but I didn't
Speaker 1: learn about the disaster until my twenties. For people that
Speaker 1: would like to know more but can't visit the port itself,
Speaker 1: there's another place to visit. There's an exhibit about the
Speaker 1: disaster at the Rosie the Riveter World War Two home
Speaker 1: Front National Historic Park Visitors Center in Richmond, California. This
Speaker 1: is where I first learned about the event, along with
Speaker 1: a lot of other amazing stories about the people who
Speaker 1: fought the war from home and how wartime shaped the
Speaker 1: Bay Area. The museum is at the site of the
Speaker 1: Richmond Shipyards and Fort Assembly Plant. I highly recommend this
Speaker 1: free museum to anyone who is interested in these topics
Speaker 1: or as in the area. Thanks for keeping me company
Speaker 1: through the more monotonous parts of my day, Best Emily.
Speaker 1: Thank you so much, Emily for this note. If folks
Speaker 1: have been sort of waiting for a reason to write us,
Speaker 1: you can write us for any reason. Just say hi.
Speaker 1: You can send pictures of your pets. We love to
Speaker 1: hear random things about people's lives, as well as emails
Speaker 1: like this that have a cool new information that we
Speaker 1: didn't know about before. So thank you so much, Emily.
Speaker 1: Uh If you would like to write to us, we're
Speaker 1: a history podcast at how Stuff works dot com and
Speaker 1: then we are all over social media at miss in History.
Speaker 1: That's where you will find our Facebook, Interest, Instagram, and Twitter.
Speaker 1: You can also come to our website, which is missing
Speaker 1: history dot com, where you will find a searchable archive
Speaker 1: of all the episodes that we have ever done and
Speaker 1: show notes for the episodes that Holly and I have
Speaker 1: done together. Uh and you can subscribe to the show
Speaker 1: on Apple, podcast, the I heart Radio app, and wherever
Speaker 1: else you get your podcasts. Stuff you Missed in History
Speaker 1: Class is a production of I Heart Radio's How Stuff Works.
Speaker 1: For more podcasts for my heart Radio, visit the heart
Speaker 1: Radio app, Apple Podcasts, or wherever you listen to your
Speaker 1: favorite shows.