0:01

Welcome to Stuff You missed in History Class,

0:03

the production of I Heart Radios How Stuff

0:05

Works. Hello,

0:12

and welcome to the podcast. I'm Tracy V.

0:14

Wilson and I'm Holly Fry. Today

0:16

we are finishing out our two part are on the

0:19

direct the litamide, which caused serious

0:21

health problems and multiple disabilities

0:23

and at least ten thousand people born in

0:25

the late nineteen fifties and early nineteen

0:27

sixties, so folks who are in their late

0:29

fifties and early sixties. Today.

0:31

We're recording this in twenty nineteen. Last

0:34

time we talked about the direct itself and how it

0:36

made it to market and how a crisis unfolded

0:39

after its release, and today we're going to talk about

0:41

the response to all of this, including

0:43

criminal trials, changes the drug laws,

0:45

and debates about the legality of abortion,

0:48

and how this has really continued to evolve

0:50

for the litamide survivors until today.

0:52

This will probably not make much sense

0:54

if you have not heard part one. Yeah,

0:57

you'll be a little in the weeds. Uh.

1:00

Again, we mentioned at the top of the other one at

1:02

part one that this is, you know, a little bit more

1:04

of a serious subject and not always

1:07

the most comfortable discussion, So keep that in

1:09

mind. There's still some appalling stuff

1:11

in the realm of disability rights in terms

1:13

of how people have been treated that kind

1:15

of thing as well. So after

1:17

thelidamide was withdrawn from the market, authorities

1:20

started reviewing the case histories of people

1:22

who were affected by the drug, including children

1:25

born with fetal pilidamide syndrome and their

1:27

parents, and adults who had developed

1:29

permanent neuropathy and other nerve disorders.

1:32

After six years of review, the

1:34

bill of indictment that was delivered was nearly

1:36

one thousand pages long. Ultimately,

1:39

charges were brought against nine men

1:41

who worked at Shami grunenthalogy mb

1:44

H, which was the pharmaceutical company that had

1:46

developed the litamide. This included

1:48

owner and founder Herman Vertz,

1:51

senior chief scientist Dr

1:53

Heinrich Muchter, and seven other men.

1:56

They were charged with involuntary manslaughter

1:58

and intent to commit bodily harm, and their

2:00

trial began on May seven, nineteen

2:03

sixty eight. Criminal proceedings went

2:05

on until nineteen seventy, with

2:07

a panel of five judges hearing hundreds

2:09

of hours of testimony from more than

2:11

three hundred fifty witnesses and

2:13

receiving tens of thousands of pages of

2:16

evidence. Throughout it all, Grunenthal

2:18

maintained that it's safety testing on the litamide

2:21

had met the requirements of the time and

2:23

that it could not have known that the drug could disrupt

2:25

fetal development. But then, after

2:27

nearly two and a half years, on December

2:29

eighteenth, nineteen seventy, the panel

2:32

of judges dismissed the charges.

2:34

They did this with the approval of the prosecution,

2:37

and Grunenthal was granted immunity

2:39

from further criminal prosecution in Germany.

2:42

At the same time, the company agreed

2:44

to establish the Countergone Foundation,

2:47

funded with one hundred million Deutsche marks

2:49

matched by the West German government. More

2:52

than two thousand, five hundred families who

2:54

had pending civil cases were

2:56

pressured to drop their lawsuits and to accept

2:58

this settlement. Ins and the years

3:01

since this happened, there have been many

3:03

allegations of wrongdoing relating

3:06

to this trial. In the

3:08

UK's the Litamide Trust unearthed

3:10

documents suggesting that there had been a secret,

3:13

behind the scenes negotiation between

3:15

Grudenthal, the German federal government

3:17

and the state government of the state of North

3:19

Ryan West Failure without any

3:22

the Litamide survivors or their representatives

3:24

present. Journalist Harold Evans

3:27

reported on this through The Guardian and Reuter's.

3:29

According to these reports, Hermandert

3:31

Sr. Was at these meetings even

3:33

though he had been excused from attending

3:35

the trial for reasons of his health.

3:38

The documents also suggested that State

3:40

Minister of Justice Joseph Newbarger, whose

3:43

department was overseeing the prosecution, had

3:45

previously been a partner at Grunenthal's

3:48

law firm. Yet that would be a huge

3:50

conflict of interest. Meanwhile,

3:52

Grudenthal's website now today

3:54

maintains that quote Grunenthal is adamant

3:57

that there was no secret deal or other

3:59

politic interference to halt the trial.

4:01

We are not aware of any evidence

4:03

justifying these claims. The

4:06

company's statement goes on to say, quote, the

4:08

allegedly new documents were in part

4:10

wrongly dated, and that the relationship

4:12

between them was wrongly described

4:14

or distorted by the attorneys. Also,

4:17

in more recent years, some writers have looked

4:19

into connections between Grunenthal and members

4:21

of the Nazi Party. There is a whole

4:24

conspiracy theory that solidimided was

4:26

developed prior to or during World

4:28

War Two and tested in concentration camps

4:31

that does not appear to be true, but

4:33

it is true that various people working at Grunenthal

4:35

did have ties to the Nazi Party, which

4:38

is frankly also true of a lot of businesses

4:40

that operated in Germany during and after

4:42

World War Two. Regardless

4:45

of whether these claims about the trials

4:47

are accurate, the end result was

4:49

the same. The charges against

4:51

eight Grunenthal employees and its founder

4:53

owner were dropped, the company was

4:56

given immunity from prosecution, and

4:58

the Contragne Foundation was a ablished

5:00

to provide financial support to families

5:02

who were affected by the litamide. The

5:04

foundation's operations are governed

5:06

by German public law and today

5:08

it's paying monthly pensions, annual

5:11

pensions, or one time payments to people

5:13

in thirty eight countries. Grunenthal

5:15

has maintained that this settlement was quote

5:17

widely supported by the parents of the affected

5:20

children as well as the general public,

5:23

but many solidamide survivors have said

5:25

the opposite, Without even getting

5:27

into the idea of compensation for the

5:29

emotional pain and grief involved, many

5:31

pensions just have not been enough to support

5:33

the basic day to day needs of many people

5:36

born with fetal solidomide syndrome.

5:38

Payments from the foundation have been

5:40

increased that a couple of points since

5:43

it was first established, and today the

5:45

maximum is eight thousand, one seventeen

5:47

euros a month. Grnenthal also

5:50

added an additional fifty million euros

5:52

to the fund into and two thousand nine,

5:54

but today the payments from the foundation

5:56

are coming from the German government rather than

5:58

from Grunenthal. There's also a

6:01

separate Grunenthal Foundation that distributes

6:03

non cash support, like modifying

6:06

the litamide survivors bathrooms and vehicles

6:08

to make them accessible. That eight thousand,

6:11

seventeen euro number might sound

6:13

like a lot, but living with fetal

6:16

the litamide syndrome can be incredibly

6:18

expensive. Many survivors

6:20

require round the clock care or assistance,

6:23

along with multiple surgeries and medications,

6:25

physical therapy, and devices like powered

6:27

wheelchairs with customized controls and

6:29

lifts to move a person to and from

6:32

the wheelchair. My mom's powered

6:34

wheelchair cost more than my car.

6:37

Yeah, that's an industry my husband

6:39

worked in for a while, and there were some

6:41

models that I was absolutely mind

6:43

boggled when I saw the prices on them.

6:46

Yeah. So, Apart from

6:48

whether the financial settlement itself

6:51

is enough money, many survivors

6:53

have described the process of getting

6:55

benefits as unnecessarily bureaucratic

6:58

and difficult. Applicants have

7:00

to document how they were exposed to the lidamide,

7:02

including sending their medical records.

7:04

Applications have to be submitted in German

7:07

and there's a life certificate showing

7:09

that the applicant appeared in person.

7:12

People who don't live in Germany have to travel

7:14

to a German embassy or consulate, although

7:16

in some countries there are alternate locations

7:19

that are like notaries or other other

7:22

places. That includes in Brazil, Spain,

7:24

the Netherlands and Great Britain and Ireland.

7:26

If an applicant is physically unable

7:29

to leave their home, or if the location

7:31

where they're supposed to appear in person

7:34

isn't accessible to people with disabilities,

7:37

because that is still an issue in a lot of the world,

7:40

the applicant can submit a certification

7:42

from their physician. The Linamite survivors

7:44

and their families have really criticized Grunenthal's

7:47

actions and responses to all of this,

7:50

including an apology that the company issued

7:52

on August thirty one. The

7:55

apology was delivered at the dedication

7:57

to a memorial in Stolberg, Germany,

8:00

and it depicts a sculpture of a young girl

8:02

with fulk amelia wearing prosthetic

8:04

legs as well as an empty chair.

8:07

Yeah, a lot of people felt like Grunenthal did not

8:09

need to be at that dedication at all, and

8:11

then at it. Harold F. Stock, the CEO

8:13

at the time, delivered this apology

8:16

translated into English. It's said, in part,

8:18

quote, Grunenthal has acted in accordance

8:20

with the state of scientific knowledge and all industry

8:23

standards for testing new drugs that were relevant

8:25

and acknowledged in the nineteen fifties and sixties.

8:28

We regret that the tar atogenic potential

8:30

of the litamide could not be detected by

8:32

the tests that we and others carried out

8:34

before it was marketed. The statement

8:37

later went on to say, quote, we also apologized

8:39

for the fact that we have not found a way to you

8:41

from person to person for almost fifty

8:44

years. Instead, we have been silent,

8:46

and we are very sorry for that. We asked that

8:48

you regard our long silence as a sign

8:50

of the silent shock that your fate has caused

8:53

us. We have learned how important

8:55

it is that we engage in an open dialogue

8:57

with those affected and to talk and to listen

9:00

to them. We have begun to mutually

9:02

develop and implement projects with them

9:04

to improve their living situation and assist

9:07

in hardship situations easily and efficiently.

9:09

We will continue to pursue this path in

9:11

the future. Overwhelmingly, the

9:14

lidamiters and their families did

9:16

not find this sufficient. Parts

9:18

of it definitely read as though they are saying, we're sorry,

9:20

but it wasn't our fault. Exactly. If

9:23

you go and read their f a Q and their website,

9:25

there are a lot of things on it that kind of make

9:28

you go, you didn't really answer that question,

9:30

and also you're still saying it wasn't your

9:32

fault. The immunity

9:35

that was granted to Grunenthal when these charges

9:37

were dismissed in nineteen seventy only applies

9:40

in Germany. So there have been other court

9:42

cases and civil suits in multiple

9:45

other countries, both against

9:47

the pharmaceutical companies that distributed

9:49

the litamide in those countries and

9:52

the governments that allowed them to do

9:54

it, just as examples the UK,

9:56

the Litamide Trust was established as

9:58

the Litamide Children Trust in nine seventy

10:01

three following a settlement between the Stiller's

10:03

Company Limited in four nine disabled

10:06

children who had been exposed to the litamide

10:09

in Canada, A lawsuit against the litamides

10:11

distributor there led to cash settlements

10:14

and the establishment of a federal fund. The

10:16

result of all of this is kind of a patchwork

10:19

of programs and benefits that really vary

10:21

from one country to another, with

10:23

some paying benefits only if the applicant

10:25

isn't getting support from somewhere else. Many

10:28

programs also require documentation

10:30

of the litamite exposure, which in some cases

10:33

is simply not possible. One

10:35

of the things we talked about is that sometimes people

10:37

would share their medications with someone else, probably

10:40

not any documentation there. Um.

10:42

In the minds of many survivors, it

10:44

also shouldn't be necessary since outside

10:47

of the context of the litamite exposure, these

10:49

patterns of disability are incredibly

10:51

rare. Yeah, It's like there's sort of a

10:53

choice between possibly

10:56

paying benefit to somebody who has a similar

10:58

disability that wasn't caused by the litamide,

11:00

which is incredibly rare, or requiring

11:03

all the litamide survivors to go through

11:05

this huge rigmarole and

11:08

a lot of effort to get basic support

11:10

for day to day needs. Um. I didn't

11:12

really write it in this outline, But there have also

11:15

been some countries that have issued formal

11:17

apologies or have talked about issuing

11:19

formal apologies for not

11:21

regulating the companies

11:24

that were distributing the litamide more carefully

11:26

before and during this whole crisis. So

11:29

all of this is really really still

11:31

ongoing. A financial

11:34

support package known as the Canadian

11:36

the Litomized Survivors Support Program

11:38

or ct SSP, was announced on

11:41

January ninth, twenty nineteen, so

11:43

just this year, with an application

11:45

period running until June.

11:48

That follows on to earlier programs

11:50

from and this

11:53

is intended in part to allow survivors

11:55

who were previously turned down for

11:58

a lack of documentation to reapply,

12:01

and it's ongoing in another sense as

12:03

well. The solidamide survivors

12:05

who were born in the nineteen fifties and sixties

12:07

are in their late fifties and early sixties

12:09

now. Numerous surveys of

12:12

survivors in various countries have reported

12:14

that their general health and quality of life

12:16

are decreasing as they age. To

12:18

quote from the result of a survey conducted

12:20

in the UK, quote, as the litamide

12:23

survivors reach their mid fifties, they are experiencing

12:25

a wide range of secondary health problems,

12:28

in particular muscular skeletal problems

12:30

and depression and anxiety, with

12:32

multi morbidity a growing issue.

12:35

These health problems are having a negative impact

12:37

on their employment. Two fifths are unable

12:40

to work and their physical health related

12:42

quality of life, which is significantly

12:44

poorer than the general population. Some

12:47

of this is exacerbated by the fact that

12:49

many the litamide survivors have compensated

12:51

for missing or shortened limbs by using

12:54

their other limbs instead, so

12:56

for example, using their feet in place of hands,

12:58

and this means that they're particularly susceptible

13:01

to overuse injuries, joint issues,

13:03

and other muscular skeletal problems.

13:06

This also means that many thalidomie survivors

13:08

are needing additional care and support while

13:11

simultaneously reaching retirement

13:13

age or being unable to work because

13:15

of their disabilities and health conditions.

13:17

And many of those who are receiving support from

13:20

one of the Solidamie survivor funds were

13:22

evaluated when they were much younger, so

13:24

they need more now than they did when they were initially

13:27

approved, and the dollar amounts

13:29

that they've been granted have not necessarily

13:31

been adjusted for inflation. Plus

13:33

some of these funds will only pay for specific

13:36

types of treatments and services, and

13:38

not for things that aren't regarded as

13:40

a medical necessity. But a lot

13:42

of thelidamide survivors report that what they

13:44

actually need the most help with is day

13:47

to day tasks like housekeeping and personal

13:49

hygiene, which some funds won't

13:51

cover. Some funds also won't

13:54

cover things that weren't directly connected

13:56

to the litamite exposure. So, for example,

13:59

of fund might pay for prosthetic

14:02

arms because a person's folk amelia was directly

14:04

caused by the litamite exposure, but

14:07

not pay for physical therapy to

14:09

address an injury that resulted from using

14:11

feet in place of missing hands.

14:14

We are going to take a short break before we talk

14:16

about some of the changes to disability rights,

14:19

medicine, and the law that followed

14:21

the the litamide crisis. Back

14:30

in part one, we talked about how

14:32

in many parts of the world, the first

14:35

response to newborns who had been exposed

14:37

to the litamide was a sense of hopelessness

14:39

and recommendations that be placed at institutions.

14:43

Those attitudes started to shift

14:45

hospitals and other practices that

14:47

had specialized in fitting patients

14:49

with prosthetic limbs, a lot of them had

14:51

initially been focused on veterans

14:54

of wars turned their attention

14:56

to making limbs that were suitable for children.

14:59

Soon specialists were working on a range

15:01

of limbs that were appropriate for different

15:03

stages of a child's development, and

15:06

on new types of press dcs that could

15:08

work with different types of folk amelia.

15:10

There's obviously still a long

15:12

way to go in terms of accessibility

15:14

and social attitudes about disability,

15:16

but it was a start. And also, I don't

15:19

want us to give the impression that every thalidomide

15:21

survivor uses press decies. It really

15:23

depends on what an individual person is

15:26

comfortable with and wants to use and what works

15:28

for them. Attitudes about congenital

15:30

conditions and disabilities also started

15:32

to shift in the wake of the thalidomide crisis.

15:35

The field of teratology, or the study

15:37

of malformations during development, was still

15:40

very new. It's generally noted

15:42

as being established in the nineteen thirties,

15:44

and before that point there had not been much

15:46

research into how a substance or

15:48

condition could affect development in uteroone.

15:52

It had been established that some things could negatively

15:54

affect how a fetus developed, including

15:56

a lack of vitamin A or vitamin B, or

15:58

the rubella virus. The general

16:01

public often thought congenital disabilities

16:03

or health conditions were brought on by natural

16:05

forces or were just random, and

16:07

there were lots of superstitions and religious

16:10

and spiritual beliefs that were kind of baked

16:12

into this whole idea and muddied the waters

16:14

a bit. The The litamide crisis

16:16

prompted a lot of research into

16:19

teratology in general, with the

16:21

first medical journal dedicated to

16:23

it established in the nineteen sixties.

16:25

I feel like at timelines of

16:28

of teratology as a field, a

16:30

lot of times there's literally a pre the

16:32

litamide and post the litamide

16:34

era in the timeline. Researchers

16:37

started studying which drugs can

16:39

pass through the placenta and what

16:41

allows them to do that while other drugs

16:44

can't. And then there have also been hundreds

16:46

of studies into the litamides specifically

16:49

over the decades. It's only been in the

16:51

last couple of decades that researchers

16:53

have started to figure out exactly

16:56

what causes the litamides teratogenic

16:58

effects without getting too deep

17:00

into chemistry, because there are about ten different

17:03

terms involved. That we would have to define. This

17:05

solidimide molecule exists into

17:07

configurations which are essentially mirror

17:10

images of each other. The one

17:12

known as the R configuration acts as

17:14

a sedative, the one known as the

17:16

S configuration is a tarata gym,

17:19

and the R configuration can be converted

17:21

into the S configuration within the human

17:24

body. So even if drug manufacturers

17:26

made a very pure version that only included

17:29

the R type of the drug, it's still

17:31

would not be safe during pregnancy. Research

17:34

is still ongoing into exactly how

17:36

the S configuration disrupts fetal

17:38

development. I found five

17:40

different headlines spanning more

17:42

than a decade that each claimed that researchers

17:45

had finally figured it out. This

17:47

is a thing that's building and discovering

17:49

new elements of figuring it out.

17:52

The most recent of these came from Dana Farwork

17:54

Cancer Institute in August of eight

17:57

teams, so just last year, according

17:59

to the press really ease quote. Building on years

18:01

of previous research, the researchers found

18:03

that the litamide acts by promoting

18:05

the degradation of an unexpectedly

18:08

wide range of transcription factors

18:11

cell proteins that helped switch teams on

18:13

or off, including one called SAL

18:16

four. The result is the complete

18:18

removal of SAL four from cells.

18:21

Aside from these shifts in public awareness

18:24

and attitudes and the huge growth of a

18:26

huge field of medical research, no

18:29

single drug has had a bigger impact on

18:31

pharmaceutical regulations than the

18:33

litamine. In much of the world, the pharmaceutical

18:35

industry was really growing without a lot

18:38

of regulations in place in the nineteen fifties

18:40

and nineteen sixties. In May of

18:42

nineteen sixty three, British Minister of

18:44

Health Kenneth Robinson said, quote, the

18:46

House and the public suddenly woke up to

18:48

the fact that any drug manufacturer

18:51

could mark any product, however inadequately

18:53

tested, however dangerous, without

18:56

having to satisfy any independent body

18:58

as to its efficacy and safety.

19:00

And the public was almost uniquely unprotected

19:03

in this respect. So these new laws,

19:05

and I mean they are really all over the world,

19:07

set much more specific standards

19:10

into how drugs had to be tested, including

19:13

animal testing meant to confirm whether

19:15

a drug is safe during pregnancy

19:17

before it's tested on or administered

19:20

to humans. In places where

19:22

abortion was illegal, the palidomide

19:24

crisis also became part of debates about

19:26

legalizing it or adding additional

19:28

exceptions to the existing law. In

19:31

the US, for example, abortion was a felony,

19:34

and usually the only exception was

19:36

if the mother's life was at risk. Along

19:38

with a rubella epidemic that was happening at

19:40

roughly the same time, the palidomide

19:43

crisis led to discussions about whether

19:45

the law should be expanded to include

19:47

exceptions for pregnancies in which the baby

19:49

would not be able to survive after being

19:51

born, and there were also people who

19:53

used the crisis to support a eugenics

19:56

argument in the context of abortion, either

19:59

to support the idea of allowing abortion

20:01

for eugenic purposes or to advocate

20:04

for keeping abortion illegal because

20:06

of its potential use for eugenics.

20:09

This became national news in nineteen sixty

20:11

two. Sherry Chessen was the

20:13

host of Arizona's locally syndicated

20:15

version of the children's TV show Romper

20:17

Room. Her husband had brought

20:19

some medication home with him from a trip to

20:21

London, and she had taken some of it early

20:24

in her pregnancy with their fifth child. Later,

20:27

she read an article about Dr Francis

20:29

Oldham Kelsey's work to prevent the litamite

20:31

distribution in the United States, and

20:33

she realized that it was the same drug that her

20:35

husband had brought home with him. Chessen

20:37

talked to her doctor, who contacted doctors

20:39

in Europe and then recommended that she terminate

20:42

her pregnancy. Chessen later

20:44

described this decision as absolutely

20:46

agonizing, and she was also afraid

20:49

that the same thing might happen to other

20:51

women, so she told her story

20:53

to the Arizona Republic under the understanding

20:55

that her identity would be kept confidential.

20:58

Chessen's name became public after

21:00

the hospital ultimately turned down her

21:02

request for an exception and her attorney

21:05

filed suit on her behalf. She

21:07

lost her job, she got hate mail and death

21:09

threats, including threats to her other

21:11

children. Chested and her husband ultimately

21:14

had to travel to Sweden, where abortion was

21:16

legal, to terminate the pregnancy. Although

21:19

it's no longer manufactured or distributed

21:21

by Grudenthal, the litamide has been

21:23

reintroduced in several parts of the world

21:26

in the years since it was banned. That's something

21:28

that we're going to talk about in just a moment. And

21:30

as different regulatory agencies

21:32

have tried to figure out how to minimize

21:35

the risk to developing fetuses, abortion

21:37

has continued to be part of this conversation, and

21:40

that conversation has also included the litamide

21:42

survivors themselves. During

21:44

advisory committee meetings related to the reintroduction

21:47

of the litamide, Randolph Warren,

21:49

the founder of the Lidamide Victims Association

21:51

of Canada, stressed the need

21:54

to consider the possibility of abortion

21:56

in this context, saying, quote, people

21:58

should not be forced to sign anything

22:00

that would force them to have an abortion should

22:03

a the litami be born, because we have

22:05

some quality of life and some right

22:07

to be here. A lot of these questions

22:09

about the lidamide and abortion in general

22:12

are still ongoing in many parts of the world

22:14

today, and we're going to talk about the

22:16

reintroduction of the lita mine after we take another

22:18

sponsor break.

22:27

It wasn't long at all after the

22:30

litamides worldwide ban that doctors

22:32

began discovering that it could have medical

22:34

use as an adult patients beyond being

22:37

a sedative. In nineteen sixty

22:39

four, so just two years later, doctors

22:41

at a hospital in Jerusalem gave the

22:43

lidamide to a patient who had advanced

22:46

Hanson's disease, which is also known as leprosy.

22:49

This patient was in very severe pain

22:51

and could not rest, so a doctor

22:53

administered some the litamide that he had

22:56

on hand, basically as a last resort.

22:58

This doctor, j GB chess Can, realized

23:01

that that the litamide also treated

23:03

some of the diseases symptoms beyond

23:06

just being a sedative. The World

23:08

Health Organization conducted a clinical trial

23:11

of solidamide as a Hanson's disease treatment

23:13

in nineteen sixty seven. Today,

23:15

it's used in some places to treat your thema

23:17

a dosum laprosum or e n L,

23:19

which is a complication that causes

23:22

painful nodules, high fever, and inflammation.

23:25

The litamide is approved for treating E n

23:27

L in some parts of the world, but the

23:29

World Health Organization does not recommend it

23:31

because of its teratogenic effects and because

23:34

there are other drugs that can treat

23:36

E n L. Yeah. Even though today

23:39

hanson disease can be treated with a very

23:41

long course of multiple antibiotics,

23:43

this complication can happen during the

23:45

process or even afterwards. So even though

23:47

Hanson's disease is more treatable than it

23:49

used to be, this particular complication still does

23:52

happen for people. Since then,

23:54

the litamide has also been discovered

23:56

to be effective against a number of other

23:58

serious diseases and conditions

24:00

and complications, including

24:03

AIDS, wasting syndrome, and multiple

24:05

miloma. Because it can inhibit

24:07

the growth of blood vessels, it's also effective

24:10

and cutting off the blood supply to certain

24:12

cancers. This has of course

24:14

been an incredibly difficult and sensitive

24:16

topic amongst the litamide survivors

24:18

in their families. In the words

24:20

of Randolph Warren from an article in f

24:23

DA Consumer in two thousand one, quote,

24:25

we will never accept a world with solidamide

24:27

in it. However, we are forced

24:29

to prefer licensing of the drugs that disabled

24:32

us for compassionate reasons and to

24:34

prevent uncontrolled access to the drug.

24:37

Yeah. I mean, no group of people is a monolith.

24:39

People all have their own opinions. But as

24:41

a group, the litamide survivors in

24:43

general have been like, we're not

24:45

going to try to stop you from keeping people

24:48

who need this drug from having it, but we

24:50

have got to protect people. So,

24:52

for example, when the US was trying

24:54

to set standards for prescribing the litamide

24:57

for multiple mileoma and hands and disease,

25:00

Warren and the the Linamide Victims Association

25:02

of Canada were part of that process,

25:04

including attending advisory committee

25:06

meetings with the Food and Drag Administration in the National

25:09

Institutes of Health. The result

25:11

from all these meetings was the system for

25:13

the Lidomide Education and Prescribing

25:15

Safety Program known as STEPS, which

25:18

is now called Risk Evaluation and

25:20

Mediation Strategy or REMS.

25:23

REMS is very involved,

25:25

providers have to be certified, and distribution

25:27

of the drug is highly restricted. Patients

25:30

who could become pregnant are counseled on the

25:32

risks of the drug. Along with contraception

25:35

and emergency contraception. The

25:37

litamide can also be present in siemens,

25:39

so male patients whose partners could become

25:42

pregnant are required to use condoms

25:44

even if they have had a vasectomy or if their

25:46

partners are using contraceptives, and

25:49

this is really just the beginning.

25:51

Patients who could become pregnant are required

25:54

to have two negative pregnancy tests

25:56

before starting treatment. They must use

25:58

two forms of birth control while being

26:00

treated, and also take regular pregnancy

26:03

tests. The pills are also dispensed

26:05

in blister packs rather than pill bottles,

26:07

so that they can't be confused with other

26:09

medication or easily put into an

26:12

unlabeled container. The pills

26:14

themselves in most cases literally

26:16

have a picture of a pregnant silhouette

26:19

crossed out they're printed on the pill.

26:22

No more than four weeks of doses

26:24

are dispensed at a time, and there are no automatic

26:26

refills. Unused doses

26:28

are supposed to be returned rather than discarded,

26:31

and there's just a lot of follow up

26:33

and monitoring of patients regardless

26:36

of their sex. And this is the standard in

26:38

the US. So in order to be treated

26:40

with solidamide, a person has to give up

26:42

a degree of bodily autonomy just

26:44

to comply with all these regulations.

26:47

That has led to a whole discussion of medical

26:49

ethics and what it means for patients

26:51

to essentially just be reduced to being

26:53

viewed in terms of their capacity to have children

26:55

and how to control that capacity, as

26:57

well as what it means for a disabled person to be

27:00

reframed as a problem that should be prevented.

27:03

Yeah, we've we've talked on the show at various

27:05

points about disability

27:07

rights and about the evolving view of

27:10

not thinking of disability as like a

27:12

bad thing that needs to be fixed,

27:15

but instead thinking of society is

27:17

something that needs to change to be accessible

27:19

to everyone. The

27:21

the litamide survivors community

27:23

has been pretty vocal about

27:26

the fact that in their view, this

27:28

is something that happened to them that should

27:30

not have happened to them and should not happen

27:32

to anybody else. So

27:34

it's a little bit different nuance than some of

27:36

the other disability rights things that we have

27:38

talked about. And then also, like we

27:41

said back in part one of this episode, these

27:43

steps don't necessarily prevent every

27:46

exposure. Hanson's disease

27:48

is really prevalent in Brazil,

27:50

and the litamide was re licensed in

27:53

Brazil for that reason. In n there

27:56

have been people born with feetle the litamide

27:58

syndrome in Brazil than including

28:01

in very recent years. After

28:03

examining the birth records of seventeen

28:05

point five million people born between

28:07

two thousand five and about

28:10

one hundred were found to have health conditions

28:12

and disabilities that are consistent with fetal

28:15

the litamide syndrome. Brazil

28:17

has similar regulations for

28:19

dispensing the litamide compared to

28:21

what the US does, But the parts of Brazil

28:23

where hands and disease is the most prevalent

28:26

are also the parts where the medical system

28:29

is the least robust, and I

28:31

mean it would not surprise me at all that if

28:33

there are other countries where the litamide has

28:35

been reintroduced that have a similar situation,

28:37

but Brazil is where the most research

28:39

has been done. So that's the litamide

28:41

not a story that is confined to the past,

28:44

as folks may imagine

28:47

it from seeing things like Call the Midwife,

28:49

which um that plot

28:51

arc on Call the Midwife plays out over a long

28:53

time in terms of episodes, because it has a very similar

28:56

trajectory to what we talked about in

28:58

Part one, between somebody having

29:00

morning sickness being given this drug because

29:02

it's been sort of a wonder drug for

29:05

treating morning sickness, to then eventually much

29:07

later making the connection between that drug

29:09

and people being born with this range of disabilities.

29:12

Tracy d have a bit of listener mail to wrap

29:14

this one up. I do. This is from Emily.

29:17

Emily says, Hi, Holly and Tracy. I'm

29:19

excited to finally have something to contribute

29:21

for listener mail. I was born and raised

29:23

in Conquered, California and have driven through

29:26

the Conquered Naval Weapons Station and on

29:28

the Port Chicago Highway for a long time,

29:30

but I didn't learn about the disaster until my twenties.

29:33

For people that would like to know more but can't visit

29:36

the port itself, there's another place to visit.

29:38

There's an exhibit about the disaster at the Rosie

29:40

the Riveter World War Two home Front National

29:43

Historic Park Visitors Center in Richmond,

29:45

California. This is where I first learned

29:47

about the event, along with a lot of other amazing

29:50

stories about the people who fought the war from

29:52

home and how wartime shaped the Bay

29:54

Area. The museum is at the site

29:56

of the Richmond Shipyards and Fort Assembly

29:58

Plant. I highly recommend this free museum

30:01

to anyone who is interested in these topics or as in

30:03

the area. Thanks for keeping me company through the

30:05

more monotonous parts of my day, Best Emily.

30:08

Thank you so much, Emily for this note. If

30:10

folks have been sort of waiting for

30:12

a reason to write us, you can write us for any

30:14

reason. Just say hi. You can send

30:16

pictures of your pets. We love to

30:19

hear random things about people's lives,

30:21

as well as emails like this that have a

30:24

cool new information that we didn't know about before. So

30:26

thank you so much, Emily. Uh

30:28

If you would like to write to us, we're a history podcast

30:30

at how Stuff works dot com and then we are all

30:33

over social media at miss in History.

30:35

That's where you will find our Facebook, Interest,

30:37

Instagram, and Twitter. You

30:39

can also come to our website,

30:41

which is missing history dot com, where you will find a searchable

30:44

archive of all the episodes that we have ever

30:47

done and show notes for the episodes that

30:49

Holly and I have done together. Uh

30:51

and you can subscribe to the show on Apple, podcast,

30:54

the I heart Radio app, and wherever else

30:56

you get your podcasts. Stuff

31:02

you Missed in History Class is a production of I Heart

31:05

Radio's How Stuff Works. For more podcasts

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31:12

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