Thalidomide was marketed to pregnant women as an antidote for morning sickness in the late 1950s, but the results were calamitous. An epidemic of babies born with various disabilities including limb, organ and neural damage led to its withdrawal from sale in November 1961. There were over 5000 known thalidomide survivors living worldwide in 2003, including 500 in the UK.
As a healthcare researcher, I had come to understand the thalidomide catastrophe as a systems failure: the disastrous outcome of an inadequate medications approval process. My dad, Dr Martin Johnson, was Director of the UK Thalidomide Trust between 2000 and 2014, and through him I had come to learn about its terrible impacts upon individuals and their families. I also understood that many survivors were still awaiting justice. However, in 2018, together with his co-authors Professor Ray Stokes and Tobias Arndt, dad published ‘The Thalidomide Catastrophe’, the first and only comprehensive history of thalidomide. Reading it led me to realise I had been seeing through a glass darkly. When laid bare, the thalidomide story is stunning, shocking and almost unbelievable. Here I share with you nine things I learned from the book:
Ed, aged 3
Nine things you didn’t know about thalidomide
- The full number of people affected by the drug reached tens of thousands. It is well known that thalidomide caused babies to be born with disabilities. However, it is highly likely that many other children died in the days and months after birth and that even more were miscarried or stillborn because of thalidomide. Johnson, Stokes and Arndt estimate that altogether, between 87,600 and 275,500 babies were affected.
- A single tablet had disastrous effects. Researchers have been able to link the days on which tablets were taken with specific forms of damage. For example, a tablet on days 21-22 after conception could cause damage to, or loss of the eyes. A tablet on day 24 could cause loss of the arms and a tablet on day 29 could cause loss of the legs. The key message from this is that the babies who survived thalidomide were those whose mothers took a tiny amount of the ‘poisonous pill’.
- Key players in the development of thalidomide are linked with the Nazi regime. The book explores this issue in meticulous depth and it is hard to summarise the evidence briefly. However, two things are clear. The first is that the Chief Scientist of Chemie Grunenthal, the Germany company who patented the drug, was Dr Heinrich Muckter. Muckter spent World War 2 (WW2) at an institution which tested drugs on Buchenwald concentration camp prisoners. The second is that Otto Ambros was a consultant for the Distillers Company, the British organisation which distributed Thalidomide in the UK. Ambros was sentenced to 8 years for his war crimes during WW2, which included using slave labour from the Auschwitz III-Monowitz concentration camp.
- Thalidomide seriously harmed adults too. When taken for more than 2 weeks, thalidomide could cause adults to contract ‘polyneuritis’, nerve damage involving symptoms such as tingling, numbness, excruciating muscle cramping and even partial paralysis. It could affect coordination, balance and the ability to walk. Altogether, around half a million adults were probably affected. “The Thalidomide Catatrophe” provides the response from Chemie Grunenthal to one affected surgeon who used the drug. “Thank you for your letter of 8th March 1960 in which you tell us you are increasingly suffering from paraesthesia and… probable polyneuritis… We wish to advise you that we have received no such reports to date” (p110). This letter was a lie: the company had received several reports and their false reassurance may have caused the surgeon to keep taking the harmful drug. As Johnson, Arndt and Stokes comment, these effects probably cost this surgeon his career.
Tina Gallagher in 2002
- Warnings the drug was dangerous were ignored. To this date, Chemie Grunenthal claim that they could not have known about the harmful potential of Thalidomide. The evidence presented by Johnson, Stokes and Arndt makes this almost impossible to believe. For example, there is clear evidence Grunenthal’s Chief Scientist, Heinrich Muckter, received warnings a year before thalidomide even went to market from Dr Piacenza, an Italian doctor who undertook trials of the drug. Writing in 1956, Piacenza reported that the drug was unsuitable due to its toxicity. He described side effects in adult patients which included a whole-body rash and peripheral nerve damage. Reports from concerned physicians continued to be sent to Grunenthal, but the drug was not removed from market. Concerns were also raised about the potential harmful effects of thalidomide on unborn babies. For example, in 1959, scientist Dr Randolph Riemschneider raised concerns that thalidomide was causing birth defects in tadpoles he was experimenting with. As he later recorded, “we sent this information with photos to Chemie Grunenthal… Unfortunately, no answer was forthcoming” (p115).
- Even when its impact was known, Chemie Grunenthal continued to sell thalidomide. There were warnings that thalidomide was harmful before it even went to market. However, Chemie Grunenthal did not publicly acknowledge its harmful potential until 1961. In a speech on 14th July that year, Heinrich Muckter, Grunenthal’s Chief Scientist told his staff, “if I were a doctor, I would not prescribe Contergan [trade name for thalidomide] any more. Gentleman, I warn you… I see great dangers” (p41). Yet he didn’t withdraw the drug from sale until November that year. If he had pulled it immediately after his speech, more than 25% of the babies who were affected would have been saved.
- The impacts of thalidomide are sometimes invisible. Not all survivors were affected by the limb damage which is characteristic of thalidomide. As a toxic nerve agent, it also caused devastating hidden damage. Johnson, Stokes and Arndt report the situation of Julie Lane, whose mother had been supplied with the drug. Outwardly, Julie only had minor hand damage. However, at a young age, she developed epileptic fits. In her teens, she lost the use of her legs and later on, her arms. She also gradually lost her hearing and her sight. As her epileptic brain activity was not typical, her symptoms were misdiagnosed as being psychosomatic, and not of physical origin. This caused her problems to be stigmatised. However, a post-mortem conducted after she died aged 44 showed evidence of major internal damage which had been there since birth.
- Survivors still wait for justice. Chemie Grunenthal, the company which patented thalidomide, has never been held to account. A trial was called in 1968 but later suspended, apparently on the basis that “public interest in a continuation of the criminal prosecution no longer exists” (p.131). In the UK, Distillers, the company which distributed the drug paid out some compensation following a lengthy legal battle. However, survivors in some other countries have never received compensation, and all survivors are still waiting for an apology from Chemie Grunenthal.
- Some countries protected their populations from thalidomide. Several countries which considered licensing thalidomide denied or significantly restricted the sale of the drug. These included Turkey, East Germany, the USA and France. In Turkey, Dr Aygun undertook tests involving tissue cultures and concluded the drug was unsafe in 1960. In East Germany, the relevant officials had concerns based simply on the information supplied in the patent. They noted that due to the structure of the molecule, an “embryo-toxic effect” (p124) was possible. They refused a licence. In the USA, Dr Frances Kelsey resisted significant pressure from the prospective American licensee company (Richardson Merrell) and managed to delay the approval of the drug until it was removed from sale in 1961. Her delay meant that only around 160 babies are estimated to have been affected by thalidomide in the USA. What these countries show is that the toxic properties of thalidomide were possible to identify using the technologies and processes of the time. Those governments which failed to prevent the distribution of thalidomide are partly to blame for the disaster, and should also be held to account.
Thalidomide survivors today
In 2019, the generation of thalidomide survivors is turning 60. What “The Thalidomide Catastrophe” makes clear is this: the international sale of the drug was preventable. Its risks should have been identified by the company which patented the drug, those which distributed it and by the governments which allowed its sale. The damage which was initially caused has been extended over six decades by a failure to acknowledge and apologise for the harm that was caused. The need for an apology remains.
A very useful summary on a tragic situation. I hope justice is served soon after all these years. Thanks for sharing.
An informative but extremely sad article. I believe this injustice for those affected Baby Boomers and their families who have possibly carried a huge burden of guilt needs addressing.
Being a thalidomide victim, reading this makes me want to read the book. One thing mentioned, that over 160 babies born here, at least we know of, it was great seeing that those #’s opposed to 17, which was what had always been what many thought, so 160, more on target! Thanks again❤️
Author
Thanks so much for reading and for your feedback Denise, I am really glad you found it relevant.
Currently freedom of information act has the numbers as 600 pregnancies and 200+ live births. Less than half are still with us. I am one.
But thalidomide was in USA from 1956 to 1962 as samples millions of pill was handed out like candy no one stopped it here until it was to late the damage was already done many children in USA affected Kelsey did not stop this drug all lies
Author
Thanks for reading John. I’m afraid I don’t have the depth of knowledge needed to respond to your comment myself- but the book’s authors would,if you contact them directly.
John, I have your same opinion. My cousin whom I knew well, was born in 1947 and was most obviously a thalidomide baby. My baby brother, born in 1955, may also have suffered from thalidomide: he was born with bilateral club feet. Thalidomide was being distributed, possibly marketed, when and wherever, with or without FDA approval. Nobody stopped its proromotion, distribution, or marketing anywhere or anyttime. The documents and records are NOT the truth.
Very important and in-depth article. Thanks!
I am a Thalidomider and i have read this book , when will the German government do the honest and decent thing and prosecute Grunenthal and publicly shame them ?
Wish I could contact you in private. Not too many of us Mothers of these children left. Not only did my child have limb damage, I have had muscular problems ever since. I was given Thalidomide in late 1968, from a cupboard in my Drs office as a sample. Have evidence that they tried to cover it up by giving me an abortion, with out consent, but they missed my son….aborted only his twin sister. It’s a real horror story that haunts me to this day.
Author
I am just so sorry to hear this Mary, it sounds simply terrible. If you do want to contact me direct there’s a form on the website that will send me an email, or my address is j.johnson@leeds.ac.uk. I myself am no expert in thalidomide (I just read the book and wrote this blog) but very happy to talk if it’s of any help.
Mary, it sounds like you’re on personal life can actually be a book! I’m sorry for all that’s happened to you. I’m thankful that your son was spared. We live in an evil world and we just watched it again with the so-called Covid pandemic
I was born in late ’63. I’m sure I was not considered in the count of 17 or 160 Thalidomide babies born in the USA. My mother was given the pill(s) at Barnes Hospital in St Louis. There was no official recording of this, as it was supposedly pulled from distribution long before. Physically, I consider myself one of the lucky ones with only digits malformed. Emotionally, being different has been very difficult at times.
A high school friend of mine was a Thalidomide child …. he had one finger on each hand and one toe on each foot. He was about 6′ tall and an attractive man. We played baseball together. It was like he never felt he had a disability. He did what he could – WHEN he could. Can you imagine holding a baseball bat with only one finger on each hand ? He did it. Other than his hands and his toes, he was a normal child and young man ….. I never knew about his drug and its side effects until my mom told me about it …. I simply thought my friend was born with “potentially normal” birth defects …..
I have read that the same drug, or a variation of it, is being tested/used for other purposes, one of which has to do with the treatment of leprosy; Some patients have given birth to children with similar deformities. But at least they know (I hope) the risks, and presumably could avoid betting pregnant while on the treatment…
Were thalidomide pills ever called pregnancy test pills in Atlantic Canada
I was born in april 1962 with thalidomide,missing palm and missing fingers,short thumb and a stump,reading and seeing how badly it has affected others made me realise i was lucky it was just my hand,it has impacted my life from day 1 to the present day,there was never any help you just have to manage as best as possible,i,m starting to suffer with pain from overuse in my other arm now,i cant imagine how much others are suffering,it affects your mental health as much as your physical health,all of your life,i,m glad that it seems to be given a lot more light these days,i hope everybody suffering from the effects can find their own way to ease their problems
My mother was offered this drug in her pregnancy with me. She was told it could cause sleepiness so with two other young children she refused it. However, a friend of ours was not so fortunate. She was born without arms and severe mental issues. She died when she 14. Very sad.
Did you know that one of the former nazi-doctors assosiated with Chemie Grünenthal has a grandson who has spoken out publicly about his grandfather? I discovered this in a news article from CBS NEWS from may 19th 2024 with the headline “Chilling photo album reveals how SS officer who helped run auschwitz wanted to remember the concentration camp” Heinz Baumkötter who used to experiment on prisoners in Sachsenhausen during WW2, and who later is said to have worked for Chemie Grünenthal after being released from imprisonment in the Soviet Union in 1956. The grandson, Tilman Taube, discovered Baumkötter in one of the other photographs in the so called the Höcker album that made headlines with chilling images of the happy camp guards eating blueberries in the sun during spare time. And thus he realized just how deeply involved his grandfather had been with the holocaust. Baumkötter had been photographed as part of a delegation of camp doctors touring the killing facilities of Auschwitz-Birkenau. Taube did not try the typical defending strategy used by so many others in similar situations. On the contrary, he now reaches out to other familymembers of nazi criminals to try to get them to reveal any information, historical material or evidence they have for historical use. It looks like Taube is currently living in Essen, Germany. He clearly is the kind of person who is willing to talk about the uncomfortable past of his grandfather. He or his family may well know more about the history of the thalidomide scandal and of those responsible for it. Trying to contact him may be worth the effort if you want to know more. Personally I am a relative of one of the fiew survivors from among Baumkötter’s many victims at Sachsenhausen and I was shocked to learn of how doctors like Baumkötter just went on practicing medicine after the camp experiments and murders. That some of them were linked to the thalidomide tragedy, makes my stomach turn another time. But this guy may be both able and willing to break a little of the still ringing silence around the matter. That is, if he hasn’t allready done so.